Help with Potty Training Autistic Children

An autistic child may not be ready for potty training at the same time expectations as a typically developing child. 

Autistic differences can affect different children in different ways, which means there is no one magic formula for supporting an autistic child with potty training. However, it is important to understand the differences and how they may impact toilet training.

Sensory Differences

Autism can affect the way in which a child processes sensory information. They may experience sensory input more intensely than another peer, this is known as hypersensitivity and cause children to become distressed by, or avoidant, of that particular sensory input.

Conversely, children may also have hyposensitivity, which means that they experience sensory input less intensely than a typically developing child. Sometimes this means that a child does not respond to sensory input and sometimes a child will actively seek out the sensory input.

Differences in processing external stimuli can sometimes be obvious, for example a child with noise hypersensitivity may place their hands over their ears in response to noise and a child with olfactory hyposensitivity may like to smell objects and people.

Difficulties with processing internal sensory information, such as hunger or the urge to have a pee may be less obvious. Recognising and understanding internal sensory information is called interoception.

Autistic children can feel the urge to go to the toilet more intensely or less intensely than their peers. 

This can also apply to the way they experience the feeling of wet or dirty nappies or underwear. Disliking the feeling of wet underwear can motivate neurotypical children to learn toileting skills, but this can make a hypersensitive child very distressed or not be felt if the child is hyposensitive.

Sitting on a narrow or hard potty or toilet can also feel uncomfortable for some children with sensory issues. 

Communication

Autistic children have communication and interaction differences, and this will need to be taking into account when planning toilet training. Differences can affect expressive language (the child’s use of language), and also receptive language (their ability to understand language).

Toilet raining requires you to teach your child what to do and for them to let you know when they need the toilet. If your child has difficulty with using or understanding language, adapted or alternative methods of communication will need to be utilised to support potty training.

Social Understanding

Typically developing children will often begin to move to a quiet area to pee or poo in their nappy, and this is used a sign that the child is ready for toilet training. The behaviour shows that the child has now become aware of their bowel or bladder movements. However, there is an element of social behaviour to this too; the child is seeking privacy or time alone to do what they need to. If your autistic child is not socially aware or appears to be in their own world they may not behave in this way even when they are aware of the need to pee or poo.

Preference for sameness / Difficulty with Changes

Many autistic children prefer familiar routines and sameness. They find changes difficult, and there are a lot of changes involved in toilet training! Some children will find it hard to move from wearing a nappy to pants, and others may take some time to adjust to a toileting routine.

As autistic children feel more comfortable with routine and predictability, it will be important that everyone involved in potty training uses the same approach.

Praise and Rewards

Neurotypical children respond well to social praise and rewards, and you may have been advised to use praise or even a ‘star chart’ to encourage potty training. If your autistic child enjoys being praised and receiving stickers, this can be a great way to help them learn. However, for many autistic children, having an adult talking loudly, making a funny face and waving a sticker around is not a pleasant experience; and may actually deter them from using the toilet or potty. 

Example Plan

Below is an example of how you might go about starting toilet training. It is important to remember that all children are different and you know your child best, so always do what you feel is best for them.

Step 1 – Make a plan

Before attempting toilet training think through how you are going to implement the steps below and make a plan of how you will approach toilet training. When you are ready make sure other family members and nursery or school staff are aware. If you have already started toilet training without success, consider taking a break and starting afresh in a few weeks time.

You will need to balance the time taken for your child to learn a new skill and adapt to a new routine with recognising if they are not ready for toileting. We would suggest that you commit to your plan for 10 days and review, if there is no progress you can always try again in a month or two. Children often struggle with inconsistency, so try not to start potty training and then revert to using nappies when out and about during those 10 days.

Step 2 – Select a potty and practice

Before starting toilet training, consider where your child will pee or poo. This is especially important if they are in school or nursery, as the arrangements should be the same in both. If nursery will be using a toilet with a child seat, then using a potty at home will cause confusion.

There are a range of potties and toilet seats available. Try and choose one with smooth, flat edges that will be more comfortable. Built in ‘family’ toilet seats are often more comfortable than the removable ones.

When you have decided and sourced your seat or potty, encourage your child to sit on it a few times a day for a few days, look at a book together whilst they are sitting, or let them sit and watch a tablet for a few minutes.

Step 3  – Prepare your communication and reward

Think about how you can explain what you want your child to do. Visual cue cards are a good way of explaining things to autistic children. Stick the cards in the routine order wherever they will be using the toilet and prepare a card that they can use to tell you they need to go to the toilet.

(you can find examples here)

Start preparing them by showing them how you use the toilet (yes let them look down afterwards!).

You will need to reward your child when they are successful. Decide what you will use as a reward, if your child does not like praise or stickers, think about using a small food reward or time or a favourite toy or even extra TV or tablet time.

Step 4 – Try and find a pattern

For the next few days keep a record of what and when your child eats and drinks. Observe their behaviour and keep checking their nappy, write down the time when they have peed or pooed. You can use this to work out how long after food or drink you should get them to use the potty / toilet.

Potty Training Day 1

When your child is up, fed and settled use your planned method of communication to explain what is expected of them.

Replace their nappy with cotton pants.

Place a clean nappy in the potty or wedge it under the toilet seat.

Encourage your child to sit on the potty for 5 minutes every 30 minutes. Give them an enjoyable activity when they are on there. Use a sand timer or digital count down clock so that they know how long they should stay.

If your child does not like interaction, try being quiet or sitting outside the room. 

Reward them for sitting.

If your child pees or poos give them an additional reward.

If they have an accident, try not to show any reaction and quietly clean them up.

Potty Training Day 2

Repeat Day 1

Potty Training Day 3

If you child has sat on the potty / toilet as you have asked for the past 2 days, stop rewarding them for it. Now only reward if they use the potty or toilet.

Potty Training Days 4 -10 

If your child has not been successful in peeing and pooing on the toilet / potty, continue as per day 3.

If your child is being successful, lengthen the time between potty visits gradually and offer show them the toilet card, key word or gesture to encourage them to seek out the toilet when they feel the urge to go.

When they begin to do this, or take themselves to the toilet you can stop the regular toilet / potty visits.

Day 10

If your child has not been successful this time, take a break. They are probably not ready, try again in a month or two.

Categorised in: Child Autism, Practical Advice

More Posts

Is It Depression or Autistic Burnout?

12/08/2024Adult Autism / Child Autism / Symptoms of AutismFor many of our adult clients, realisation that they may be autistic is recent and usually prompted by talking to another autistic person, seeing a therapist who has recognised the characteristics or reading something online. A large proportion of our clients have previously been diagnosed with depression. How can you tell if it is depression or undiagnosed autistic burnout? Autistic burnout often happens following events or life points that the “typical population” find exciting, such as: Moving from primary school to high school Moving from school to university Starting a new job / changing jobs Leaving home Moving in with a partner Starting a family Autistic burnout is related to the actions and interactions that autistic people typically struggle with, such as: (unhinged autistic people may not recognise these issues are related to autism) Feeling like you are constantly ‘acting’ in social situations Feeling anxious about meeting new people, worrying about what to say and / or preparing conversations in your head Not enjoying purely social activities, such as hanging out in the park as a teenager or going to the pub for after work drinks as an adult Finding constant low level social interaction draining, such as small talk at the coffee machine and the ‘what are you doing at the weekend?’ conversation before your meeting starts Finding it difficult to work out when it is your turn to talk to your turn to listen Struggling with changes, whether it is a new job or a new boss or a new IT system in work Experiences sensory sensitivities, such as being irritated by loud noises or specific noises such as people chewing, finding bright lights or strong smells overwhelming Although autistic burnout is not technically a recognised disorder with clear diagnostic criteria, people often report the following symptoms: Sheer exhaustion, needing to lie down or sleep for long periods often Heightened sensory sensitivities Forgetfulness Having difficulty taking or finding the right words Feeling more irritable Unable to regulate emotions, anger outbursts or overwhelming anxiety Feeling like you want to hide from the outside world How to help yourself: Use equipment to help make daily life more bearable, try wearing sunglasses, sleeping under a weighted blanket and using noise cancelling headphones Take time to recharge throughout the day, take a walk in a quiet place, listen to music, find a quiet room to sit and read Engage in your interests, if you have an interest that brings you joy make time for it every day Be kind to yourself, recognise you have needs and learn to say ‘no’ Consider an autism assessment, a diagnosis will help to ensure you employer, friends and family understand your needs and will mean your employer has to make reasonable adjustments for you [...]

Using Intensive Interaction Techniques to Develop Social Communication in the Early Years 

17/04/2024Child AutismPre-verbal early years children often show a decreased amount of social interest, problems with joint attention and are often self-directed.  Intensive interaction is an approach to developing social interest and social interaction; some of the principles of intensive interaction can be implemented at home without specialist skills and training. However, a therapist or practitioner experienced in intensive interaction can help you develop your skills and knowledge with the approach, or you can find further sources of information at the bottom of this page.  Research has shown that intensive interaction can improve levels of joint attention, social engagement and communicative speech amongst other skills.  What is joint attention and why is it important?  Autistic infants often have difficulty with joint attention.  The term ‘joint attention’ refers to the ability of two people to focus on the same external object and share this together. This means that both people are aware that the other is paying attention to the object, and both enjoy sharing this interest with each other.  Pointing out an aeroplane in the sky, bringing a spider to show you and looking at a book together are all examples of joint attention.  Joint attention is one of the fundamental skills needed to develop communication. Being able to share an interest not only acts as a motivator for communication but also provides opportunities for learning words and phrases.   In typically developing children joint attention starts developing before the age of 12 months and is a precursor to the development of social language.  There are two main joint attention skills, the ability to respond to someone else initiating joint attention and the ability to initiate joint attention.   You may have noticed during your ADOS 2 assessment that the examiner tried to direct your child’s attention to the bunny toy – this was to assess their ability to respond to joint attention.  When a child directs attention to something that they want, maybe a toy that is out of reach, this is not joint attention. Joint attention is about sharing interest or enjoyment in an object or activity rather than communicating needs.  If your child is not yet using social language and does not show interest when you show them objects or does not show you objects that interest them it is likely that they have not yet developed joint attention.  Intensive interaction techniques can help with the development of joint attention, which in turn will support the development of communicative speech.  What is Intensive Interaction?  The principles of intensive interaction were originally developed from understanding how babies develop communication skills during their first year. It is now understood that social interaction skills are developed during the first year due to their interaction with their care givers and the baby’s neural pathways being primed to learn.  The theory behind intensive interaction looks at the way that typically developing children develop social interaction skills during the first year is assisted by the way that adult caregivers naturally interact with them. For children with social development delays, continuing with these approaches after the baby stage has shown to improve social interaction.  This does not mean that developmental delays associated with autism are caused by the way a parent interacts or does not interact with their child. The ethos of this approach is that children with developmental delays can benefit from the typical adult – baby style of interaction for a longer period.    Adult- Baby Interaction  It is helpful to think about the ways in which adults typically interact with babies, as the approaches we use are reflected in the approaches used in intensive interaction.  The first thing to consider is that there is usually no purpose or goal with adult – baby social interaction, the interaction is purely for the purpose of social enjoyment.   When we think about the time we spend socially interacting with babies, it is for quite short periods frequently throughout the day. The pace is slow allowing the baby to not become overwhelmed.  During the interaction, the baby tends to lead with the adult watching and waiting and then responding to the baby’s actions and interactions. The adult does not ‘drive’ the interaction, they sit back and enjoy.  Much of the interaction involves mimicking, copying and responding to what the baby did.  The adult response is usually exaggerated but calm and always happy and positive.  Adult responses are simple and involve facial expressions and gesture with brief vocalisations rather than complex speech.  And finally, interaction between adult and baby is often repetitive, the adult will repeat actions and interactions that have previously elicited a joyful response and the baby enjoys the predictability.  How is Intensive Interaction Implemented? Intensive interaction provides opportunities for your child to experience enjoyment in interaction along and to develop the skills needed for social interaction and communication. Whilst some thinking ahead will be needed, intensive interaction should be led by your child and involves you trying to enter your child’s world; therefore, the approach needs to be flexible and responsive when making attempts to gain your child’s interest and repetitive when you find approaches that work.  Intensive interaction is best undertaken in-situ, using yourself and familiar objects as the tools.   One to one time is needed, but for brief periods throughout the day.  What is the Goal of an Intensive Interaction Session?  Enjoyment! Intensive interaction focuses on you and your child enjoying different forms of social interaction together. There is no ‘end goal’ or ‘achievement’ for a session, and interactions need to be relaxed and unpressured. Intensive interaction does not attempt to ‘teach’ any specific skills but rather provides an extended opportunity for skills to develop.  What Skills / Behaviours Develop as Precursors to Communication?  There are many precursors to the development of communication and intensive interaction aim to develop these.  These include: Acknowledging another person, this may be observed as a glance, touch or a change in behaviour when the other person is noticed  Developing a social awareness, you might observe your child give you brief eye contact, smile in response to you, grab you or make a sound  Anticipation, you might see your child become excited or joyful when you approach or when expecting you to repeat an activity such as blowing bubbles  Copying, your child will copy the things you do or sounds you make, they may want to blow the bubbles to you  Turn taking, your child starts to take turns in interaction, they may play brief social games such as peek a boo  Responding to joint attention, your child responds to you pointing or showing them something by looking at the object and engaging with you in relation to it  Initiation of joint attention – your child begins to direct your attention to things they are interested in or brings you things to show them to you  How Long Will It Take to See a Change?  Every child is different and every child’s response to the principles of intensive interaction will be different. Some children may already show some social interest whereas others may not. Some children will respond with interest to your approaches immediately and for others you will need to repeat your approaches throughout the day for a few weeks before interest is shown. Autistic children may not make clear responses and so observing closely for potential signs of engagement is also important.  When you use intensive interaction approached it is important that you relax and go with the flow rather than be driven by wanting to see changes such as hearing your child use language.  Preparing to Deliver Intensive Interaction  Intensive interaction does not require intense planning and is not an approach that is highly structured. However, before trying intensive interaction approaches it might be worth you take time to understand the principles of the interaction, thinking about the things you could try as well as when you will be able to secure one to one time. Please also be sure to read the considerations for autistic children later in this article.   After reading more about intensive interaction below, it will be worth you setting aside some time to quietly watch your child, noticing the detail of what they like to do and the behaviours they like to engage in. Make a note of some ideas that you could try as methods of interaction around these.  Principles of Intensive Interaction The principles of intensive interaction are based on the typical adult-baby style of interacting as outlined previously and include:  Focus on the interaction not a goal or outcome  Work with your child’s level of tolerance, try the approaches for brief periods throughout the day  Go slowly, hold back and allow your child to lead  Pause frequently, give your child time to process your reactions and respond  Try mimicking and copying, get down on your child’s level and imitate what they do. Try copying their verbal and non-verbal behaviours or their actions  Respond to what they do in positive, definite ways without being loud or over emotional  Keep your actions simple and straightforward, do not use complicated language or lots of non-verbal communication at the same time  Repeat, if you find something your child finds interesting or enjoyable – do it again!  Finally relax; remember you are not looking for a change at the end of an interaction or during the next interaction but are providing an ongoing opportunity for your child to begin to enjoy and develop social interaction.   Considerations for Autistic Children  Autistic children often find eye contact uncomfortable, do not force eye contact as part of your interaction with them.   They may not give eye contact as part of showing their interest in you, look for other signs such as a glance toward your face, a smile, increased excitatory stimming or a grab towards you.  If your child becomes upset when you touch or move their toys, do not use their toys to copy what they are doing. Instead have a selection of similar items that do not form part of their toy collection or use items they are used to seeing you handling (such as cutlery, pegs, pencils or small cereal packets)  Autistic children sometimes dislike others in their personal space, if this is the case keep a distance that they are happy with. Activities You Could Try  Intensive interaction always starts with you getting down to your child’s level, observing them and trying to enter their world. When you are relaxed and in their company you could try:  If your child is engaging in repetitive behaviours, try coping these – try not to feel uncomfortable about this  Copy your child’s vocalisations, replicate the sound they make using the same pitch and tone  If your child is lining up or stacking, do the same near them  Sit quietly near your child and make short, quiet comments about what they are doing, for example: “Puppy likes being stroked” “The ball is rolling”  Sit on the floor next to your child playing and just watch for a few minutes, showing an interest in what they are doing  Next steps As you see your child beginning to develop a social interest and develop the behaviours that indicate they are developing their pre-verbal skills you can continue to focus on helping them to enjoy the interaction between you and to be able to use interaction to get their needs met.   You may want to try making suggestions, initiating interactions or instigating play.  Remember to keep the interaction positive, child centred and at their pace.  Further Information The Intensive Interaction Institute The Intensive Interaction Institute provides information, resources and training in relation to intensive interaction www.IntensiveInteraction.org  Books The Intensive Interaction Handbook (2nd Ed, 2018) edited by Hewett , D.: Sage Publications, London.  Using Intensive Interaction with a Person with a Social or Communicative Impairment (2010) Firth, G. & Barber, M: Jessica Kingsley, London  Examples There are many examples of intensive interaction activities on YouTube.   [...]

When Do the Symptoms of Autism Start?

04/04/2024Child Autism / Symptoms of AutismThis article has been written by Jo Condon, our Service Director. Jo has a wealth of experience in the field of autism and has worked with NHS, national government, education and private sector both nationally and internationally. A common question that we often hear from parents is ‘When do the symptoms of autism start?’. Autism is a lifelong neurodevelopmental difference, which means that autism has been present from birth. The way that autism impacts an individual varies, and so does the age at which autistic differences become apparent. For some children, indicators of autism can be seen in the first few months whereas for others it is only when social demands increase that signs are noticed. Typically, an autism assessment can be carried out from around the developmental age of 18 months. By the age of 5 most autistic children have begun to deviate from their neurotypical peers developmentally; masking and camouflaging behaviours can sometimes mean that the differences are not always obvious. The pattern of autistic children’s strengths and differences vary from that of their peers. Autistic differences include difficulties with social – emotional social exchanges, communication, play and relationships. Autistic children also engage in behaviours that are more restricted, less flexible or more repetitive than their neurotypical peers and may also process sensory information differently. Development at 6 months old Babies typically begin to deliberately make eye contact from around 2 months, and by 6 months they will be able to use eye contact during interaction and be beginning to follow their parent’s gaze to turn toward what they are looking at. Typically developing babies will have been responding to their parent’s smile with a smile for a couple of months by now, and by 6 months will be beginning to respond to other people’s emotions by crying or laughing; others will be able to tell whether they are happy or annoyed from their facial expression. They will have begun to babble using ‘ba’, ‘da’ and ‘ga’ sounds. Gesture will be starting to develop and they may raise their arms to indicate they want to be picked up. They will be beginning to enjoy parents engaging physically with them, such as laughing when being tickled or bounced, and will be excited when they see familiar people. Indications of Possible Autism in 6 Month Olds: Avoiding eye contact Not responding to a parent’s smile with a smile Lack of facial expression Fussiness around less familiar people, or when people interact with them Lack of enjoyment in physical interaction such as bouncing or tickling Content to sit and watch items in the environment Does not turn in response to sounds Distress around sensory input, such as not liking loud noises, being dresses and undressed or being cuddles Development at 12 Months Old By 12 months old, typically developing babies will be pointing at objects and use ‘gaze checking’, that is looking toward their parent to check there are looking at what they are pointing at. They will be making noises to gain their parent’s attention and will look toward their parent when they call their name. Language is developing and they will be able to make meaningful sounds such as ‘baba’ or ‘dada’ and may have a few meaningful simple words. By 12 months, babies typically will shake their head to mean ‘no’ and be able to wave. They will have a full range of facial expression and parents are able to recognise happiness, anger, surprise, fear and disgust from their facial expression. They will enjoy playing interactive games such as ‘peek a boo’ and ‘round and round the garden’. Possible Signs of Autism at 12 Months Lack of pointing Avoidance of eye contact, or not using eye contact to reference objects Not responding to name Lack of interest in people Dislike of unfamiliar people Babbling has not developed into meaningful sounds Not shaking head to mean ‘no’ Lack of facial expression, or facial expression only indicates happiness and annoyance Lack of interest in, or distress at attempts to play social games Repetitive movements with hands or arms Engaging in the same activity or action, such as watching items spinning Fussy eating, spitting out certain food textures Development at 18 Months Old By 18 months, typically children will begin to pull at their parents hand or clothes to get their attention and will be able to direct their parent’s attention to things that they are interested in. They will be able to follow someone else’s point. They will enjoy interaction and with parents and try to join in with nursery rhymes. They will be able to say several meaningful words, such as ‘cup’, ‘dog’ or ‘bus’ and will be able to follow basic instructions relating to things that are out of sight, such as ‘fetch your coat’. Gesture continues to develop and they will be able to clap, blow kisses, indicate ‘shh’ with a finger on lips and nod their head to mean ‘yes’. At this age, children will be regularly offering toys to other people and will begin to execute pretend actions with their toys such as feeding a doll or acting out short scenarios with toy cars. They will begin to copy some of their parent’s actions, such as wiping the tray of their high chair. Possible Signs of Autism at 18 Months Placing parent’s hands on things that they want rather than pointing or making noises; using parent’s hands to undertake actions rather than using their own. Seems uninterested in social interaction, prefers to occupy self Does not respond to name No single words Not using gesture to communicate Preferring to engage in repetitive actions with toys and objects such as spinning wheels, lining up or stacking them Interest in unusual objects such as shampoo bottles or plastic bags Repetitive whole body movements such as spinning self, bouncing whilst flapping hands Difficulty in transitioning to solid food or from bottle to beaker Distress around certain noises such as vacuum cleaners Insistence on doing things in certain ways such as sleeping with blankets in a specific way, using the same plate or sitting on a specific seat Development at 2 Years Old At around the age of 2 years, typically developing children will be able to put two or more words together and will ask two word questions for example, “Where daddy?”. They will be able to follow simple commands and will use a range of non-verbal methods of communication, including gesture, eye contact and facial expression. At this age, typically developing children will begin to engage in simple pretend play sequences. They will imitate their parents’ actions, such as pretending to use a toy vacuum cleaner. They will begin to sow an interest in other children, though will be more likely to play alongside them at this age. Possible Signs of Autism at 2 Years Delay in developing language / not using language to communicate Avoiding eye contact, or avoiding eye contact with unfamiliar people Not using gesture, or only using gesture when prompted to do so Not pointing Lack of, or reduced range of facial expressions Avoidance of, or lack of interest in other children of same age Engaging with toys in an unusual way, such as lining them up, stacking them or watching them move rather than engaging in pretend sequences Repeating words or phrases from others or television Repetitive body movements, such as spinning, flicking fingers or bouncing Not wanting to get dressed, or removing clothes, shoes and socks Food fussiness Sensitivity to particular noises such as motorbikes or hand dryers Wanting to smell, chew or taste objects in the environment, toys or clothes Development at 5 Years Old By the age of 5, typically developing children will be using sentences to communicate and will be able to tell their parents about their day and things that interest them. They will be keen to direct their parents’ attention to things they do and things that they see. They will use a range of verbal and non-verbal communication to interact with familiar and unfamiliar people. Typically developing children will be able to identify and share their basic emotional state, for example, “I am sad…” They will be enjoying a range of play, including pretend play, both on their own and with other children. They will be able to engage in group games such as ‘tag’. Typically developing children will be showing more independence, will enjoy new experiences and will be able to leave their parents with little support to do so. Possible Signs of Autism at 5 Years Differences in verbal communication, for example: Delayed language development Decreased use of language, often quiet Avoiding communicating by using phrases such as “I don’t know”, “I don’t remember” or “I’m not sure” Using copied words and phrases Using language that makes them sound ‘older than their years’ Differences in non-verbal communication, for example: Not using, or not often using non-verbal means of communication Needing to be consistently prompted to wave goodbye or told to smile Does not point, or when pointing focusses eyes on whatever they are pointing to Avoiding eye contact, using eye contact briefly or eye contact appears intense Not using facial expression to show what they are thinking or feeling, or only directing facial expressions that relate to extreme emotions Differences in Socio-Emotional Reciprocity, for example: Not understanding when someone is hurt or upset, or becoming upset in response rather than offering comfort Not seeming to want to engage in chat with others, talking over people or answering questions only Not showing enjoyment in social interactions, seems uncomfortable; not wanting others to join in their excitement Does not refer to their emotions Not always responding to other’s social approaches, or only responding to familiar people Not asking for help, or making demands rather than asking Making inappropriate comments without realising Lack of spontaneous pretend play, for example: Does not create and act out scenes with toys Only plays pretend when told what role to take Controls play, telling others what they should do and say, opts out when not in control Acts out pretend play with toys but play is repeated or an enactment of something that has happened in real life / watched on television When dresses up does not take on the character’s role, or has fixed rules about this Difficulties with friendships and relationships, for example: Lack of interest in other children Avoidance of or reluctance to approach unfamiliar children Difficulty playing in groups, prefers to engage one on one Shows no interest in seeing peers outside of school or activity based environment Repetitive body movements or use of objects, for example: Spinning or running in circles Bouncing whilst flapping hands Repetitive hand movements, finger flicking, picking or fidgeting with objects Lining up items Wanting to watch the same TV programme or film over again Preference for routines or sameness, for example: Not liking new places or activities, or needing much assurance around these Having particular ways of doing things Needing specific items placed in certain ways or places Having specific routines that must be followed Having particular difficulties with transitions, for example, starting school, going on holiday or staying with relatives Highly fixated interests, for example: Spending much time engaged in one specific activity Being specifically interested in a specific subject and wanting to learn facts, collect objects, look at books or watch programmes relating to this Having an interest in / collecting unusual objects Unusual Sensory interests or Sensory Aversions, for example: Disliking loud noise Wanting to smell, chew or taste objects in the environment, toys or clothes Enjoying the feel of certain textures Smelling or hearing things that others cannot Wanting to climb, swing or jump Disliking lifts, escalators or slides Being irritated by the feel of certain clothes or the labels in clothes Being fussy with food, not liking food mixed together or disliking food touching on plate Not seeming to feel the cold, or enjoying the sensation of cold temperatures Development of Older Children By the age of 10 – 12, typically developing children are able to engage in conversations about a wide range of subjects with a range of different people and enjoy engaging with people. They now will be able to express their feelings with words and are aware of other people’s perceptions. They understand embarrassment and can think about what other people think about them. They have empathy towards others. Friends and friendships groups are important and they can share secrets and jokes with their friends. They are beginning to understand their own identity, interests and strengths. Potential Signs of Autism in Older Children Differences in verbal communication, for example: Avoiding communicating by using phrases such as “I don’t know”, “I don’t remember” or “I’m not sure” Having ‘stock phrases’ to boulder conversation, for example, “It was really fun” Using language that makes them sound ‘older than their years’ Differences in non-verbal communication, for example: Using less gesture Gesture appears exaggerated or copied Avoiding eye contact, using eye contact briefly or eye contact appears intense Not using facial expression to show what they are thinking or feeling, or only directing facial expressions that relate to extreme emotions Differences in Socio-Emotional Reciprocity, for example: Appearing awkward when someone is hurt or upset, leaving situation or offering comfort in a way that appears copied Not seeming to want to engage in chat with others, talking over people or answering questions in brief manner. Only wanting to talk about subjects that interest them Not showing enjoyment in social interactions, seems uncomfortable or awkward Struggling to communicate their emotional state, frequent meltdowns Not always responding to other’s social approaches, or responding in an awkward way Difficulties with friendships and relationships, for example: Struggles to manage more than one friendship Over reliant on a friendship to cope in school Arguments with other children over rules and what is right or wrong Struggle to understand why other children do not want to join in their interests Difficulty playing in groups, can lead to issues Shows no interest in seeing peers outside of school or activity based environment Repetitive body movements or use of objects, for example: Repetitive hand movements, finger flicking, picking or fidgeting with objects Sorting items by colour, size or genre Wanting to watch the same TV programme or film over again Preference for routines or sameness, for example: Wanting to know where, how and when often; needs to know the daily plan Not liking spontaneous activities or surprises Upset when things change or do not go to plan Having particular ways of doing things Have developed a range of daily routines and is upset when these cannot be followed Having particular difficulties with transitions, for example, change from primary to high school Highly fixated interests, for example: Enjoys a specific hobby or interest Has a cyclical pattern of interests, needing to learn everything about an interest and then moving on to the next Has an encyclopaedic knowledge of facts relating to a specific subject Collects objects Unusual Sensory Interests or Sensory Aversions, for example: Disliking loud noise Enjoying the feel of certain textures Smelling or hearing things that others cannot Difficulties sitting still Avoids lifts or escalators Being irritated by the feel of certain clothes or the labels in clothes Becoming overwhelmed in, or avoiding, busy environments Being fussy with food, not liking food mixed together or disliking food touching on plate Does not want to wear clothes appropriate to the weather Older Adolescence and Adulthood When autism is first identified in older adolescence or adulthood, individuals have usually developed masking, camouflaging and avoidant behaviours. Individuals often describe issues such as: High levels of anxiety, especially in relation to social interaction and unfamiliar activities Feeling as if they ‘don’t quite fit in’ or that they are different in some way Struggling to start a conversation or to engage in ‘small talk’ to keep a conversation going Feeling uncomfortable with eye contact Finding the social aspect of school, university or work difficult Needing to plan ahead, whether that is planning a journey, the days tasks or what to say to someone in conversation Copying social behaviours from others in order to ‘fit in’ or having a set of rules that are used to manage social situations Feeling exhausted after social interaction or busy environments Repressing behaviours that they engage in at home when in public Being overwhelmed by noise, smells and visual stimulation Struggling to play with children, or make up stories for them Not feeling empathy for others or feeling like that they experience other’s feelings intensely Having a strong sense of justice and fairness Having difficulty starting tasks or switching from one task to another; feeling as if they procrastinate Engaging in a hobby or interest brings intense focus, allowing them to not think about their worries and stressors At Veritas our team of autism specialists have experience of assessing and supporting autistic children and adults across the range of presentations seen within the autism spectrum.  Whether you are seeking an assessment for yourself our your child, one of our clinical team will be more than happy to discuss signs and characteristics of autism with you and help you decide whether an assessment is right for you. You can contact us by telephoning us on 01302 495128 or completing our enquiry form here. [...]

Private Autism Assessment: What is it and will it be accepted by the NHS

08/03/2024Practical AdviceThis article has been written by Jo Condon, our Service Director. Jo has a wealth of experience in the field of autism and has worked with NHS, national government, education and private sector both nationally and internationally.  More and more people are considering the option of a private autism assessment in their journey to understanding. With so much conflicting information being offered by professionals and media sources, many people struggle to understand what their options are and what is the right option for them. In this article I will explain everything you need to know about private autism assessments so that you are able to make an informed choice about whether this option is right for you  A Complete Guide to Private Autism Assessments  What is a private autism assessment?  Why choose a private pathway?  Will it be accepted by the NHS and schools?  What are the benefits of an autism diagnosis?  Why does it cost so much?  Is it autism?  Choosing a provider  People’s experience of our autism assessments  Why Choose Veritas  What is a Private Autism Assessment?  Most of us rely on the National Health Service (NHS) for our physical, emotional and mental health care. With regard to assessment for autism spectrum disorder, long waiting lists and continuing problems with professionals recognising signs and characteristics mean that more people are choosing to pursue a private assessment.  Private assessments are undertaken by professionals who are not employed by the NHS or work privately in addition to their role in the NHS. Most clinicians working in the private sector have at some point been part of an NHS team.  Private care can be accessed for a range of health needs, from dentistry to orthopaedic surgery as well as for neurodevelopmental assessments. There is a cost associated with private care, which is not covered by the NHS.  Clinicians working in the private sector should be registered with their own professional bodies, ensuring that they are working to the same standards as NHS professionals.  The NHS guidelines on private care specify that anyone is entitled to access private care, should they wish to do so; those that access private care are still entitled to free NHS care. If you are currently on an NHS waiting list, you should not lose your place on the list if you access private care.  What are the Benefits of an Autism Assessment and Diagnosis?  The main benefit of an autism assessment and diagnosis is the understanding that comes along with it, according to our clients. For older children and adults, the understanding of self, including strengths and reason for finding certain aspects of life difficult is often described as ‘life changing’. Understanding from others around them also bring significant changes. For younger children, it is usually this understanding from others that has the biggest impact. An early diagnosis can help ensure that the correct support is provided in a timely way; there is evidence that early support and intervention corelates with better outcomes in later life.  A robust autism assessment identifies an individual’s strengths, difficulties and differences and an accompanying in-depth report to be able to read and understand the individual’s profile.  Although we think of autism as a difference, it is technically classed as a disability stop this means that individuals with an autism diagnosis fall under the protection of the Equality Act (2010). The Equality Act ensures that individuals are not disadvantaged by their disability, and puts a duty on schools, colleges, universities and employers to make reasonable adjustments to ensure this does not happen.  For adults, an autism diagnosis may assist them in accessing support to find or maintain employment. Those looking for work should be able to access disability job coaches via their local jobcentre and many people in employment gain support to make working life easier via the government’s Access to Work programme.  Many adult clients find that they autism diagnosis helps with their relationships and can help their partners to understand them better.  An important aspect for children is being able to access the correct level of support education in education. Of course, the level of support needed varies for each child, for some children a better understanding of needs and some reasonable adjustments can make all the difference. Other children may need an autism diagnosis to be able to access specialist autism school. Special Needs Jungle is a not-for-profit organisation providing resources, training and information for parents and carers of children and young people with special needs and disabilities. They advise that getting an NHS or private diagnosis for a child can help with the process of obtaining an Education, Heath and Care Plan (EHCP).  We are often told by parents that they feel blamed for their child’s behaviours or that they feel that professionals do not listen to their concerns. An autism diagnosis can often provide relief for parents who have been battling services and professionals to ensure that their child is understood.  Why choose a private pathway?  Local NHS autism assessment pathways vary between areas, but most pathways have strict referral criteria which determine who is eligible to be referred for an assessment. Usually, the pathway includes the role of a referrer, who maybe your GP or a member of staff at a child’s school. This can be a barrier for many people, maybe school staff do not see their difficulties or visiting your GP is an issue.   There may be age limitations with local pathways, for example not assessing children until they reach the age of 5 or moving young people from the children’s pathway to the adult pathway when they turn 18.  Referrals for autism assessment have been steadily increasing nationally, and overall, the number of people being referred each month outweighs the capacity that NHS services have to complete assessments. This has resulted in jaw dropping waiting lists in many places.  Private assessment teams do not usually require a referral from a professional, children under the age of 18 can be referred by their parents or legal guardians and adults over 18 can self-refer.  There are usually very short or no waiting lists when choosing a private option, and the process is completed in a much shorter time frame. For example, we can usually start the assessment within 2 weeks of your enquiry and often complete the assessment within the following 2 weeks.  A private service offers a more personal approach. You will receive quick responses to your queries and be kept informed of the next steps in the process as you go along. The process will be more flexible, from choosing your preferred method of communication to choosing appointment times; your assessment will be built around you.  Experienced clinicians will take time to understand your concerns and will be able to use a range of methods to ensure they gather information that builds an accurate picture of your (or your child’s) strengths and differences.  Often, you will receive better advice and recommendations following a private assessment as your clinicians will not be limited by public service protocols.   Finally, many private providers offer an all-age service, seeing children from the age of 2 years and with no change in service for those aged 18 or over.   Will it be accepted by the NHS and schools?  Choosing to invest in a private autism assessment for yourself or your child is a big decision and the last thing that you want is for the assessment not to be accepted by public bodies.  The National Health Service and local authorities will want to see that the assessment has been carried out to the standards that the NHS follow.  The National Institute of Clinical Excellence (NICE) provides guidance for health and social care professionals that is evidence-based and denotes the best practice for the assessment and interventions of numerous conditions and disorders. This guidance is followed by NHS teams, and the NHS will expect the same standards from a private assessment if they are to accept it.  The NICE guidelines that relate to autism assessment specify that the assessment should be undertaken by a multidisciplinary team. This means that even though a single professional could undertake an autism assessment, a more robust assessment is achieved when there is more than one professional involved. This is what usually happens in the NHS.  The guidelines specify that an autism assessment should be coordinated by a single case coordinator who will also act as a point of contact for the individual or family. This means that your assessment will proceed smoothly, and you will be kept informed of where you are in the process; any questions you have can be answered in a timely way.  They advise that an autism assessment should include direct interaction and observation with the child or adult being assessed as well as gathering information about their developmental history with a focus on the characteristics of autism.  The guidelines also suggest that assessing teams should consider using autism specific tools to gather the information required as part of the assessment.   The gold standard autism specific tools are Autism Diagnostic Observational Schedule –  2nd Edition (ADOS 2) and Autism Diagnostic Interview Revised (ADI-r), which are internationally recognised as such. Both tools have scoring systems and diagnostic algorithms that help clinicians understand if the patterns of behaviour that are observed or reported are likely to be due to autism spectrum disorder.   Research studies show that the ADOS 2 alone will identify 94% of autistic individuals. NHS professionals will be familiar with these tools, but do not always use them in practice due to the level of training needed and time taken to administer them. Choosing a private provider that uses the ADOS 2 and ADI-r, and more importantly has clinicians that are trained and experienced in using them, will ensure that your private assessment is robust and understood by the NHS.  The only record of a private assessment that professionals from public bodies such as the NHS will have access to is the diagnostic report. It is therefore important that you choose a private provider who will provide a detailed report outlining all the information gathered as part of the assessment, and the rationale for the diagnosis of autism spectrum disorder based on either DSM 5 or ICD 10 diagnostic criteria. Without this, professionals will be unable to ascertain whether the assessment has been carried out to the agreed expected standards.  Why does it cost so much?  Many, many hours of work from highly qualified clinicians are required for a robust autism assessment. All the information gathered through individual questionnaires, school questionnaires, interviews and observations must be assimilated into a lengthy report. Detailed information must be robustly reviewed by a team of clinicians and evaluated against the diagnostic criteria for autism spectrum disorder.  The cost of support staff, clinics, marketing and advertising in addition to the cost of experienced clinicians means that a private autism assessment is not a cheap option.  Although not an option for everyone, many people who have experienced a private autism assessment view the cost as a worthwhile investment in the future for themselves or their child.  Is it autism?  When assessing for autism, we look for a specific pattern of behaviours and characteristics which make up the criteria needed for an autism diagnosis, these include:  Difficulties with –  social-emotional reciprocity    nonverbal communicative behaviours used for social interaction    developing, maintaining, and understanding relationships    as well as behaviours such as –   repetitive movements, use of objects, or speech   preferring sameness and routines, or engaging in rituals    intense focussed interests  and / or  sensory differences    The way in which and the degree to which each child or adult is impacted by their differences varies greatly.  If you are unsure whether an autism assessment is right for you or your child, we will be more than happy to arrange a consultation with one of our clinical experts.   They can provide you with screening questionnaires and review these along with discussing your current concerns and observations. Our clinicians are highly experienced and understand the typical strengths, differences and behaviours that indicate an autism assessment is warranted.  A diagnosis of autism can only be made after an in depth multi-disciplinary assessment, but our clinical team will be happy to provide a clinical opinion based on the information that you share with them.  Its is not unusual for autism to occur alongside other conditions such as ADHD or dyslexia. Many autistic people experience emotional difficulties such as low mood or anxiety. When we undertake an autism assessment we also look out for signs of other conditions and difficulties, and we will provide you with advice on how these can be supported or what other assessments may be beneficial.  Choosing a provider  Of course, autistic individuals are exactly that, individuals. A robust assessment will take the outcome of the interview and observation using autism specific tools alongside other information gathered as part of the assessment. A skilled assessment team, will personalise your assessment, taking into account individual presentation. For example, if someone is reporting difficulties that are often associated with autism, but these are not observed during the observation session, the team should take into account the possibility of masking or camouflaging behaviour. In this case the use of a tool to identify such behaviours such as the camouflaging autistic traits questioning will be used.  As the autism spectrum is so wide and varied, there is no substitute for clinical experience when it comes to being assessed. Clinicians with many years of experience a variety of presentations and are skilled at identifying nuances and understand how to obtain the information required to conclude an assessment.   Choosing a service with knowledgeable, skilled and experienced clinicians is not only important to ensure that your autism assessment is conducted to the highest standard, but also to ensure that any other difficulties are identified and that you receive useful advice and guidance following your assessment.   Working with clinicians who are experienced in supporting autistic children and adults and their families, as well as being experienced in conducting assessments will mean that you are able to get wider questions answered and can ask for specific advice around any issues you may be experiencing.  You may want to discuss this with any service that you are considering,  When choosing a provider, you may also wish to consider the timeliness of the assessment that they can provide. One aspect is how long you will have to wait to start your assessment; another important aspect is how long the team will take to undertake and conclude your assessment. Many people find that waiting a long time between completing the assessment and be notified of the outcome can be quite stressful.  When you choose a private assessment, you should expect the specialist autism service to be responsive, courteous, non-judgemental, friendly and professional at all times.  People’s experience of our autism assessments  We have numerous Google reviews and all are 5 * which we are extremely proud of. We ran our reviews through Chat GPT and this is how they were summarised:  Efficient and Quick Service: Many reviewers praised Veritas for their speed and efficiency in the assessment process. Some mentioned having the assessment and receiving the report within a few weeks, which was significantly faster than expected or experienced with NHS services.  Professionalism and Thoroughness: Customers appreciated the professionalism and thoroughness of the assessments and reports. They found the assessments to be detailed, comprehensive, and insightful, providing valuable information and guidance for understanding and supporting their children.  Compassionate and Understanding Staff: The staff at Veritas were consistently described as kind, understanding, and compassionate. Reviewers felt listened to, supported, and validated throughout the process. Staff members were also commended for their ability to put both parents and children at ease during assessments.  Clear Communication and Support: Veritas was praised for its clear communication and ongoing support throughout the assessment process. Reviewers appreciated the responsiveness to inquiries, prompt replies to emails, and the willingness of staff to provide helpful advice and guidance.  Life-changing Results: Many reviewers mentioned that the diagnosis provided by Veritas had been life-changing for their families. It helped them gain a better understanding of their child’s needs, access appropriate support services, and plan for the future with greater confidence.  Positive Impact on Mental Health: Several reviewers highlighted the positive impact that the assessment and diagnosis had on their mental health and well-being. They felt relieved to have answers and validation for their concerns, reducing stress and uncertainty.  Overall, Veritas Autism Assessments received overwhelmingly positive reviews for their efficient service, compassionate staff, thorough assessments, and life-changing impact on families dealing with autism.  Why Choose Veritas  We undertake multi-disciplinary assessments for autism which follow the National Institute for Clinical Excellence (NICE) Guidelines. We only use the internationally recognised, gold standard assessment tools, namely the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2) and Autism Diagnostic Interview – revised (ADI-r).  Our multi-disciplinary team have extensive knowledge, skills and experience in the field of autism, are registered professionals and have received in depth training in the use of diagnostic tools.  The Google reviews above show how important our clients are to us and we place you at the heart of our service.  We complete assessments both in person and online, and do not have a waiting list.  We offer the best autism assessment experience, contact us to discuss your assessment; we will be more than happy to answer and questions you have.  Call us on 01302 432734 during our office hours, or complete an enquiry form at any time  Our office opening hours:  Monday – Thursday: 9am – 7pm  Friday: 9am – 5pm  Saturday: 9am – 1pm  Submit Enquiry References:  Department of Health and Social Care. 2009. Guidance on NHS patients who wish to pay for additional private care. Available at: https://www.gov.uk/government/publications/nhs-patients-who-wish-to-pay-for-additional-private-care   EHCP Assessment SNJ’s “Get started” Checklist. 2011. Special Needs Jungle. Available at: https://www.specialneedsjungle.com/   National Institute of Clinical Excellence. 2011 (Last updated 2017). Autism spectrum disorder in under 19s: recognition, referral and diagnosis. Available at: https://www.nice.org.uk/guidance/cg128   National Institute of Clinical Excellence. 2012 (Last updated 2021). Autism spectrum disorder in adults: diagnosis and management. Available at: https://www.nice.org.uk/guidance/cg142 .  UK Public General Acts. 2010. Equality Act 2010. Available at: https://www.legislation.gov.uk/ukpga/2010/15/contents .  [...]

Support for Autistic People to Find Employment

26/01/2024Adult AutismIntroduction The world of employment can be challenging for many autistic people; as can seeking and securing employment. The social demands of the job application and selection process can be very challenging, as can the social demands of many job roles.  Autistic people can be very successful in the workplace, we find that important factors in successful employment include having a job that utilises specific strengths and skills, an employer who embraces the benefits that diversity in the workplace brings and accepting colleagues. Autistic people meet the definition of ‘disabled’ within the Equality Act 2010, which defines disability as a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on a person’s ability to do normal daily activities. This means that additional support may be available for autistic people both in securing and maintaining employment and that employers have a duty to ensure that autistic employees are not disadvantaged in the workplace. Identifying a Suitable Job Profile Before seeking employment, it will be important to find a role or career that you will be happy working in. Strengths and Differences Certain roles and workplace environments can be more challenging for autistic people. If you are keen to access or return to employment an important first step will be to think about how the things that you enjoy, your strengths and skills can be utilised in the workplace along with the things you dislike or find difficult. You could start by using your diagnostic report as the basis for a list of your likes / strengths and dislikes  / differences and then add to this using your current and past experiences. Here is an example: Likes / strengthsDislikes / DifficultiesWorking aloneMeeting new peopleAttention to detailSocial gatheringsArt / drawingTalking on the phoneRoutine and structureBusy / noisy placesAnimalsStiff clothes / uniformClear rules and expectationsThings changing oftenHonestVerbal communicationTrustworthyNumbersWritten communication  This activity will help you to begin to understand your personal profile in order to begin to think about what sort of roles would suit you. You can also access online quiz-type resources which can help you to be able to identify your skills and strengths; examples of such resources that are free can be found at: https://nationalcareers.service.gov.uk/discover-your-skills-and-careers https://careerswales.gov.wales/career-match-quiz https://careerswales.gov.wales/buzzquiz These resources can help you to develop your personal profile further.  You could also ask people who know you to share their views of your strengths to help you think further about your work options. Matching Your Profile to the Right Job / Career Now that you have a profile of your job preferences, strengths and differences you can start to explore the skills needed for different roles to see whether your profile matches. The National Careers Service website has a range of job profiles which outline the skills and strengths that are needed for different career paths and roles. https://nationalcareers.service.gov.uk/explore-careers Support from a Careers Service If you are finding it difficult to work out how your strengths can best be utilised in the workplace or what would be the most suitable career for you, you can find help from your local careers service. The National Careers Service (England) The National Careers Service provides high quality, free and impartial careers advice, information and guidance. The service is available to anyone aged 13 and over. https://nationalcareers.service.gov.uk/ Careers Wales  Careers Wales we can help you to plan your career, prepare to get a job, and find and apply for the right apprenticeships, courses and training https://careerswales.gov.wales/ Skills Development Scotland Skills development Scotland have professionally-qualified careers advisers, personal advisers and work coaches to support people of all ages via thier network of careers centres https://www.skillsdevelopmentscotland.co.uk/what-we-do/scotlands-careers-services/our-centres Jobcentre Plus Anyone with a disability that affects their ability to work can get assistance and advice on accessing or returning to the workplace by speaking to a Work Coach at their local Jobcentre Plus. Work Coaches are trained to be able to help disabled people to find work or to gain new skills for a job. They can help with work preparation, recruitment and interview coaching. A Work Coach can carry out an employment assessment to identify someone’s strengths and abilities. Thet will then work with the individual to create a plan of action to help you meet your employment goals. A Work Coach can also provide referrals to a specialist work psychologist, if needed, for a more detailed employment assessment. You can find your nearest jobcentre here: https://find-your-nearest-jobcentre.dwp.gov.uk/search.php Work and Health Programme Autistic people may be eligible for help to secure employment via the government’s Work and Health Programme. The Programme can provide personal support help people: identify their employment needs match their skills to work that’s available put them in touch with employers find long-term employment get training to help people find work manage health problems to reduce their impact on work You can find out more here: Work and Health Programme – GOV.UK (www.gov.uk) Interviews The job interview can be the most daunting part of the job application process, with many employers expecting candidates to present with neurotypical social communication and interaction behaviours such as using eye contact and engaging in small talk. Autistic people do not have to disclose their diagnosis to a potential employer; however, if the employer is informed that a candidate is autistic, they have a legal duty under The Equality Act 2010 to make reasonable adjustments to ensure that the candidate is not disadvantaged at interview. Reasonable adjustments may include providing information in different formats or rewording interview questions to make them more accessible. If a disability is not disclosed prior to interview you may not be able to make a complaint about discrimination after the interview. If a disability is disclosed prior to interview the employer is not allowed to ask about the candidate’s disability outside of the reasonable adjustments required or to ask if a specific aspect of the role can be undertaken.  Autistic people may also benefit from support schemes to be able to access interviews. Support to Prepare for an Interview You can access support to prepare for an interview from your local careers service or from a work coach at your local Job Centre Plus.  Disability Confident Employers Employers who are positive about recruiting and supporting disabled people can sign up to the Disability Confident Scheme, these employers have committed to take action to improve how they recruit, retain and develop disabled people.  Keep an eye out for the ‘positive about disabled people’ symbol with two ticks, or access the list of employers who have signed up to the scheme here: https://www.gov.uk/government/publications/disability-confident-employers-that-have-signed-up Disabled people who meet the minimum criteria for a job with these employers are guaranteed an interview with the company who will then consider people fairly on their abilities. Health Adjustment Passport The Health Adjustment Passport is a document that is completed by Individuals with a disability or health condition to help them identify what extra support they will need as a result of their disability or health condition in the workplace.  This could include help communicating at interview. The passport can also be used to identify ongoing adjustments needed in the workplace. You can find out more here:   https://www.gov.uk/government/publications/health-adjustment-passport Access to Work Access to Work is a government scheme designed to help people physical or mental health condition or disability get or stay in work. Autistic people may be able to apply to Access to Work to get money for communication support at a job interview. The money will pay for a communication support worker to accompany a candidate to a job interview. This will need to be applied for before the interview and the costs are paid after the interview. The costs do not need to be paid back.   You can find out more here: Apply for communication support at a job interview if you have a disability or health condition (Access to Work) – GOV.UK (www.gov.uk) Support and Adjustments in Employment When you secure employment, you should be aware that employers have a range of legal duties in relation to employing autistic people, and support in employment is also available. You can find out more in our article here: [...]

Support for Special Educational Needs and the Education, Health and Care Plan Process

19/01/2024Child Autism / Education / Practical AdviceWhat are Special Educational Needs? “A pupil has SEN where their learning difficulty or disability calls for special educational provision, namely provision different from or additional to that normally available to pupils of the same age” SEND Code of Practice (2015) Accessing a School Place The School Admissions Code of Practice requires children and young people with special educational needs (SEN) to be treated fairly. If your child does not have an Education, Health and Care Plan (EHCP), admissions authorities must not refuse to admit a child who has SEN because they do not feel able to cater for those needs. The Equality Act 2010 also prohibits schools from discriminating against disabled children and young people in respect of admissions for a reason related to their disability. There is a different process for admitting children with an EHCP, which is outlined in the article below. There are some specific circumstances where a child can access a special school place without an EHCP, but in the main an EHCP is needed to attend a special school. Children with Special Educational Needs If you are concerned that your child has special educational needs, you should raise your concerns with their educational setting or school in the first instance. Your child’s setting or school should take your concerns on board and arrange to meet with you to discuss them. Schools and settings have a legal duty to ensure the early identification of special educational needs; and where needs are identified they must provide support and intervention. A Graduated Approach Early years settings and schools should implement a graduated approach to meeting a child’s special educational needs. For most children, this involves the process of assess – plan – do – review; during this process support and interventions will be put in place to meet the child’s needs and the impact of this closely monitored and evaluated. If a child’s needs are obvious and significant, the setting or school do not have to implement the assess-plan-do-review cycle and can request specialist help or request an Education, Health and Care Needs Assessment at anytime if warranted. Parents can also request an Education, Health and Care Needs Assessment without the consent of the school or setting. Assessing Need The school or setting should be regularly monitoring each child’s progress / developmental levels and should take a broad range of information into account (including parent and child views) when considering if the child has special educational needs, and what those needs are. Alongside cognition and learning needs and abilities, they must also consider the child’s needs and abilities in relation to: communication and interaction social, emotional and mental health sensory and / or physical needs If its is identified that your child has special educational needs in any or all of these areas, the setting or school should plan how they are going to support these needs. Planning The school or setting should liaise with you as parents when planning support and intervention for your child. Working in partnership with you is known as ‘co-production’; this ethos is reflected across SEN guidance and legislation. Your child’s keyworker or teacher (with support from the SENCo) should use the information gathered during the assessment stage to set outcomes for your child. They should then plan specific interventions or support methods to help them to achieve those outcomes. You may agree to implement some interventions at home as a part of a holistic programme. Interventions may be undertaken by staff at the school or setting or may involve other professionals working with your child such as a speech and language therapist (with their agreement). During this step, staff should also note when the plan will be reviewed and what progress toward the outcomes they would expect your child to make. A copy of this plan may be helpful in the future if you need to apply for an EHCP, ask the school or setting for a copy. ‘Doing’ During this stage staff at the school or setting will implement the support strategies outlined in the planning stage. Reviewing Progress At the agreed time point, your child’s progress against the outcomes should be reviewed by the school or setting and they should share their findings with you. Staff may need to conduct assessments to measure progress or may use their day-to-day observations. They should involve you in this. If your child has made the expected progress, it may be decided that the plan will continue, or new outcomes and interventions may be set or it maybe that the support is no longer required. If your child has not made suitable progress or has only made progress as a result of support and intervention the school or setting should consider requesting an Education, Health and Care Needs Assessment. Again, it will be helpful for you to request a copy of any reports / updates. If you as a parent do not feel that your child has made sufficient progress, you can request an Education, Health and Care Needs Assessment without the consent of the school or setting. What is an Education, Health and Care Plan (EHCP)? An Education, Health and Care Plan is a legal document which sets out the views of your child and you as parent, your child’s strengths and special educational needs, outcomes for your child and the special educational provision needed to reach those outcomes. It also specifies what school your child should attend. The school / local authority have a legal duty to provide the provision outlined in the plan and the school named in the plan must admit the child. Accessing an Education, Health and Care Plan (EHCP) EHCPs are legal documents that are issued by the Local Authority. The Local Authority will decide whether your child requires an EHCP if they have conducted an Education, Health and Care Plan. If you feel your child requires an EHCP, either their school or setting will need to request an Education, Health and Care Needs Assessment in the first instance. The Local Authority may or may not agree that an assessment is needed. Details of how to request an EHC Needs Assessment in your area can be found on your Local Offer Website. Your Local Offer Website will also provide you with details of your SEND Impartial Information and Advice and Support Service (SENDIASS), who can offer you free support and advice in relation to SEN support and applying for an EHC Needs Assessment. Details of all the Local Offer websites in England can be found here – https://www.specialneedsjungle.com/englands-local-offer-websites/ Deciding Whether to Undertake an EHC Needs Assessment After receiving a request for an EHC Needs Assessment, the Local Authority have 6 weeks to gather information and make a decision as to whether they will undertake an assessment. It is important to provide the LA with as much information as you can about your child’s needs and the professionals supporting them, but you do not have to do this. The LA will often request information from people who know your child at this stage to inform their decision, but anything you can provide them with directly will help (including your assessment report). When making their decision, the Local Authority must review the evidence and consider the views of the child or young person and those that know them. If this information leads the LA to believe that the child or young person has or ‘may have’ special educational needs and that it may be necessary for special educational provision to be made for the CYP in accordance with an EHC Plan, then they must secure an EHC Needs Assessment. The LA must inform you of their decision within 6 weeks of your request. The Education Health and Care Needs Assessment If the LA agree to proceed with an EHC Needs Assessment, they will review what advice is needed and request information and advice from professionals who will provide information about your child’s needs. They will ask an Educational Psychologist to review your child and may request advice from other specialists such as autism advisory teachers. The LA will also ask for the views of other professionals that know your child across education, health and social care as well as asking for your views and your child’s views (if they have not done so already). Within a maximum of 16 weeks from your initial request, the Local Authority must consider the evidence gathered and advise you as to whether they have decided to issue an EHC plan. Issuing a Draft EHCP Plan If the LA decide to issue an EHC plan, they must provide you with a draft copy which you have 15 days to comment on. When you receive a draft EHCP, the educational placement will be blank, within this 15 day timeframe you must express any preference for a school that you have. Considering Comments and Placement If you have requested a particular school for your child, the Local Authority must consult with them. This means that they must inform them of your request and seek their views as to whether they can meet your child’s views or not. If the Local Authority feel that your child’s needs could be met within a different mainstream school (or a special school if you have requested a special school), they may also consult with them. The LA must consider your comments or requests to amend the draft EHCP and your request for a particular placement. They will then finalise the plan, naming the school that they feel can meet your child’s needs and deliver the provision outlined in the EHCP before issuing a final plan. The law says that the entire process must be completed in 20 weeks, although in reality, many Local Authorities are not able to meet this time frame. Challenging the Local Authority Decision At all points in the process where decisions are made, the Local Authority must provide you with information on what you can do if you do not agree with their decision. They will offer information on mediation for your consideration and advice how you can appeal their decision via First Tier Tribunal for Special Educational Needs and Disability (SENDIST). How Can an Autism Assessment Help with SEND Support? SEND support at all levels should be based around your child’s strengths and needs, so technically a diagnosis of autism is not needed to be able to access SEND support. However, many parents find themselves needing to ‘prove’ their child’s autistic needs in order to be able to access the correct support and provision. A diagnostic assessment focusses on all areas of autistic difference and may highlight issues not picked up in school or setting-based assessments or general developmental or mental health assessments. Many autism specific provisions require a diagnosis and this can cause difficulty when requesting a specific school a part of the EHCP process if the child is still awaiting an NHS assessment. References, Further Reading and Sources of Advice SEND Code of Practice (2015) https://assets.publishing.service.gov.uk/media/5a7dcb85ed915d2ac884d995/SEND_Code_of_Practice_January_2015.pdf Special Needs Jungle https://www.specialneedsjungle.com/ IPSEA https://www.ipsea.org.uk/ Children and Families Act 2014 https://www.legislation.gov.uk/ukpga/2014/6/contents/enacted [...]

Helping Autistic Children to Cope with Bonfire Night

31/10/2023Practical Advice / Sensory IssuesAutistic differences can affect different children in different ways, some autistic children will love watching the colourful displays of fireworks in the night sky whilst others may find the bright light of a firework display painful to watch. The loud noise of fireworks popping and banging can be distressing for some children. The pungent smell after a firework has been lit can also be disturbing. Autistic children often have a preference for routine and predictability and special events such as Bonfire Night may cause upset due to the change from normal routine. Your autistic child will benefit from support and accommodations for their sensory differences and being prepared for what will happen on Bonfire night. It is important to plan ahead when you have an autistic child, so that they know what to expect, and so that you as a parent have the plans and resources to meet their needs. Preparing Your Child for Bonfire Night If your child cannot remember last year’s Bonfire Night celebrations, if you are planning something different this year, or if your child had a negative experience last year it will be important to prepare them so that they know what to expect this year. If your child becomes very distressed by the loud noise, bright lights and busy crowds at firework displays, it will be better to keep them at home; or consider whether they could cope with driving somewhere where they can watch them from a distance in the car. However, it is very likely that they will still hear noises when at home or in the car, so prepare them for this even if you aren’t going out. Visual explanations can help, especially for those children who struggle to understand complex language. You can find examples of visual explanations below.  Picture CardsDownload Many autistic children struggle with the concept of time, you can use a regular calendar to ‘countdown’ to the day itself. Daily visual planners help many children to understand what will happen throughout the day and give them the predictability they need. If your child is going to take part in Halloween activities, you can use our Bonfire night picture cards for your timetable. You can find them below. Artboard 1Download Sensory Issues If you are going out to a firework display, you will want to wrap your child up warm so that they are nice and cosey. Being wrapped up tightly in layers of clothing can help to make your child feel safe and grounded.  Sometimes, however, autistic children do not like the feeling of clothing on their arms and therefore wrapping them up for the autumn weather can be difficult. Children who do not like the feeling of clothes on their arms maybe sensitive to the fabric moving about which gives them light pressure and can irritate their tactile senses, a tighter layer of clothing such as a compression base layer may help as these will provide some deep pressure and also form a barrier between their arms and other clothing. Children can also be sensitive to the type of fabric rather than the movement of clothes, try soft breathable fabrics such as cotton or bamboo next to their skin to see if this makes them less distressed. It also a good idea to wash new items of clothes a few times before wearing using fragrance free detergent and softener. To try and reduce the noise input from the fireworks, make sure your child has access to a pair of ear defenders or noise cancelling headphones. You could try and make a game out of the unexpected bangs from fireworks in the distance to distract from the unpleasantness, such as doing a silly dance, giving a tickle or making a funny noise to make your child laugh each time you hear one. If you are planning on setting off your own fireworks, choose quiet fireworks; these still make a noise but are considerably quieter than traditional fireworks. If you have decided to stay at home, focussing your child on their favourite activity can help to keep them distracted from the noise of fireworks outside. If your child finds the brightness of the fireworks too much, try offering a pair of sunglasses to dim them. A cotton handkerchief with a few drops of lavender or other calming essential oils can provide an alternative fragrance to that of firework smoke. A scarf wrapped around the face or even a facemask may also help your child cope with offensive smells. Crowds The crowds at a firework display can be overwhelming. Try and ensure that your child has plenty of space and is not going to bumped or touched by others. You could try standing at the back of the crowd, near the exit so that you can quickly leave if it gets too much. If your child can tolerate it (and it is safe to do so) lifting them up on your shoulders can help them to feel less enclosed in a crowd. If your child is worried about other people coming too close you could take a long a hula hoop which adults can hold with the child in the middle; this guarantees personal space as it forms a barrier around them. When Things Get Too Much If the events get too much for your child, it is important that they are able to leave to be able to feel safe. Some children will find it difficult to recognise when their anxiety is escalating and also find it difficult to communicate this with you, try providing your child with a cue card that they can use to let you know it’s getting too much; you can find an example below. Your child may find Bonfire Night difficult because of the noises, changes and unpredictability. They may not want to engage in events or be anywhere near fireworks. If this is the case, you can try and keep your routine as usual as possible. Shut your windows, close your blinds and curtains, provide ear defenders and carry on with the things you usually do. Bedtime If fireworks are still being let off after bedtime, your child may find it difficult to settle to sleep. Try and keep to the same bedtime routine as usual but be aware that your child may be anxious because of the noises. You may need to read an extra story or provide some additional reassurance.  Be patient and expect a later night.  Remember that bed time habits can start quickly, so make sure you return back to your usual routine the following night or you could find yourself reading that extra story every night! [...]

Help with Potty Training Autistic Children

12/10/2023Child Autism / Practical AdviceAn autistic child may not be ready for potty training at the same time expectations as a typically developing child.  Autistic differences can affect different children in different ways, which means there is no one magic formula for supporting an autistic child with potty training. However, it is important to understand the differences and how they may impact toilet training. Sensory Differences Autism can affect the way in which a child processes sensory information. They may experience sensory input more intensely than another peer, this is known as hypersensitivity and cause children to become distressed by, or avoidant, of that particular sensory input. Conversely, children may also have hyposensitivity, which means that they experience sensory input less intensely than a typically developing child. Sometimes this means that a child does not respond to sensory input and sometimes a child will actively seek out the sensory input. Differences in processing external stimuli can sometimes be obvious, for example a child with noise hypersensitivity may place their hands over their ears in response to noise and a child with olfactory hyposensitivity may like to smell objects and people. Difficulties with processing internal sensory information, such as hunger or the urge to have a pee may be less obvious. Recognising and understanding internal sensory information is called interoception. Autistic children can feel the urge to go to the toilet more intensely or less intensely than their peers.  This can also apply to the way they experience the feeling of wet or dirty nappies or underwear. Disliking the feeling of wet underwear can motivate neurotypical children to learn toileting skills, but this can make a hypersensitive child very distressed or not be felt if the child is hyposensitive. Sitting on a narrow or hard potty or toilet can also feel uncomfortable for some children with sensory issues.  Communication Autistic children have communication and interaction differences, and this will need to be taking into account when planning toilet training. Differences can affect expressive language (the child’s use of language), and also receptive language (their ability to understand language). Toilet raining requires you to teach your child what to do and for them to let you know when they need the toilet. If your child has difficulty with using or understanding language, adapted or alternative methods of communication will need to be utilised to support potty training. Social Understanding Typically developing children will often begin to move to a quiet area to pee or poo in their nappy, and this is used a sign that the child is ready for toilet training. The behaviour shows that the child has now become aware of their bowel or bladder movements. However, there is an element of social behaviour to this too; the child is seeking privacy or time alone to do what they need to. If your autistic child is not socially aware or appears to be in their own world they may not behave in this way even when they are aware of the need to pee or poo. Preference for sameness / Difficulty with Changes Many autistic children prefer familiar routines and sameness. They find changes difficult, and there are a lot of changes involved in toilet training! Some children will find it hard to move from wearing a nappy to pants, and others may take some time to adjust to a toileting routine. As autistic children feel more comfortable with routine and predictability, it will be important that everyone involved in potty training uses the same approach. Potty Training_Picture CardsDownload Praise and Rewards Neurotypical children respond well to social praise and rewards, and you may have been advised to use praise or even a ‘star chart’ to encourage potty training. If your autistic child enjoys being praised and receiving stickers, this can be a great way to help them learn. However, for many autistic children, having an adult talking loudly, making a funny face and waving a sticker around is not a pleasant experience; and may actually deter them from using the toilet or potty.  Example Plan Below is an example of how you might go about starting toilet training. It is important to remember that all children are different and you know your child best, so always do what you feel is best for them. Step 1 – Make a plan Before attempting toilet training think through how you are going to implement the steps below and make a plan of how you will approach toilet training. When you are ready make sure other family members and nursery or school staff are aware. If you have already started toilet training without success, consider taking a break and starting afresh in a few weeks time. You will need to balance the time taken for your child to learn a new skill and adapt to a new routine with recognising if they are not ready for toileting. We would suggest that you commit to your plan for 10 days and review, if there is no progress you can always try again in a month or two. Children often struggle with inconsistency, so try not to start potty training and then revert to using nappies when out and about during those 10 days. Step 2 – Select a potty and practice Before starting toilet training, consider where your child will pee or poo. This is especially important if they are in school or nursery, as the arrangements should be the same in both. If nursery will be using a toilet with a child seat, then using a potty at home will cause confusion. There are a range of potties and toilet seats available. Try and choose one with smooth, flat edges that will be more comfortable. Built in ‘family’ toilet seats are often more comfortable than the removable ones. When you have decided and sourced your seat or potty, encourage your child to sit on it a few times a day for a few days, look at a book together whilst they are sitting, or let them sit and watch a tablet for a few minutes. Step 3  – Prepare your communication and reward Think about how you can explain what you want your child to do. Visual cue cards are a good way of explaining things to autistic children. Stick the cards in the routine order wherever they will be using the toilet and prepare a card that they can use to tell you they need to go to the toilet. (you can find examples here) Start preparing them by showing them how you use the toilet (yes let them look down afterwards!). You will need to reward your child when they are successful. Decide what you will use as a reward, if your child does not like praise or stickers, think about using a small food reward or time or a favourite toy or even extra TV or tablet time. Step 4 – Try and find a pattern For the next few days keep a record of what and when your child eats and drinks. Observe their behaviour and keep checking their nappy, write down the time when they have peed or pooed. You can use this to work out how long after food or drink you should get them to use the potty / toilet. Potty Training Day 1 When your child is up, fed and settled use your planned method of communication to explain what is expected of them. Replace their nappy with cotton pants. Place a clean nappy in the potty or wedge it under the toilet seat. Encourage your child to sit on the potty for 5 minutes every 30 minutes. Give them an enjoyable activity when they are on there. Use a sand timer or digital count down clock so that they know how long they should stay. If your child does not like interaction, try being quiet or sitting outside the room.  Reward them for sitting. If your child pees or poos give them an additional reward. If they have an accident, try not to show any reaction and quietly clean them up. Potty Training Day 2 Repeat Day 1 Potty Training Day 3 If you child has sat on the potty / toilet as you have asked for the past 2 days, stop rewarding them for it. Now only reward if they use the potty or toilet. Potty Training Days 4 -10  If your child has not been successful in peeing and pooing on the toilet / potty, continue as per day 3. If your child is being successful, lengthen the time between potty visits gradually and offer show them the toilet card, key word or gesture to encourage them to seek out the toilet when they feel the urge to go. When they begin to do this, or take themselves to the toilet you can stop the regular toilet / potty visits. Day 10 If your child has not been successful this time, take a break. They are probably not ready, try again in a month or two. [...]

Halloween – Autistic differences can affect different children in different ways

11/10/2023Practical AdviceAutistic differences can affect different children in different ways, some autistic children will love to engage in Halloween celebrations, some will need some help to understand the celebrations before they can engage and some will find Halloween distressing so will need to be supported to avoid the celebrations.Be led by your child, and do not feel pressured to encourage them to engage in any activity that they find stressful. Halloween celebrations make people behave differently to any other day, and the traditions can be very confusing for a child who thinks very logically and can be distressing for a child with sensory issues.It is important to plan ahead when you have an autistic child, so that they know what to expect, and so that you as a parent have the plans and resources to meet their needs. Preparing Your Child for HalloweenIf your child cannot remember last year’s Halloween or found Halloween distressing last year, it will be important that you prepare them for Halloween this year so that they know what to expect.If your child can cope with visiting shops with you, you can show them the Halloween decorations and costumes in store so that they become familiar with shapes, characters and colours that Halloween will bring. You could also look things up online to show them. Visual explanations can help, especially for those children who struggle to understand complex language. You can find an example of a visual explanation here. Many autistic children struggle with the concept of time, you can use a visual calendar to ‘countdown’ to the day itself. Daily visual planners help many children to understand what will happen throughout the day and give them the predictability they need. If your child is going to take part in Halloween activities, you can use our Halloween picture cards for your timetable. You can find them here. Halloween_social story Halloween_Picture Cards Sensory IssuesHalloween celebrations can cause children to become quite rowdy, whether laughing or making ghoul sounds, noisy children can be difficult for autistic children to cope with (even if being noisy themselves). Halloween sounds being played outside shops and houses and music at parties and discos can all cause overwhelm. Making sure your child has access to ear defenders and a ‘time out’ card will help them to manage. Also consider different / unusual smells that might be very offensive to your autistic child, candles inside a pumpkin can produce a rotten smell which will be experienced more intensely by a child with hypersensitivity. If your child does not like the darkness at Halloween events, give them a torch. If they do not like the twinkling lights and candles, try a pair of sunglasses. Feeling FrightenedMany children find Halloween scary, with children and adults dressed up as spooky characters and environments decorated with blood and spider web.Autistic children may find these aspects even more frightening if they have difficulty with the concept of pretending. If you do decide to decorate your home, try using decorations that would be harmless if real (such as plastic pumpkins) or do not exist in reality (such as cartoon ghosts).If pumpkin carving, carve a happy face or the outline one of your child’s favourite things into the pumpkin instead of making a traditional jack o’lantern. If you are going to be taking them to an event where people will be in fancy dress, ask them to remove masks to show your child who they are or to show a photo if they are wearing face paint that cannot be removed as easily. Difficulties with Social InteractionIf your child does want to engage in Halloween activities, encourage them to do so. They may need additional support to understand what to do and what is expected of them wish you can provide by using simple broken-down instructions or visual cues. If they are going Trick or Treating, but will struggle with understanding social rules, you can use our visual cues to help them to know what to do. If they find interacting with unfamiliar people difficult, print off our Trick or Treat card so they do not have to worry about talking to them Trick or Treat Card LandscapeDownload Trick or Treat Card portraitDownload Coping with ChangesYour child may find Halloween difficult because of the changes and unpredictability. They may not want to dress up or engage in events and activities. If this is the case, you can try and keep your routine as usual as possible. Place a note on your door to discourage Trick or Treaters and enjoy the things you regularly do. [...]

Signs of Autism in 2 Year Olds

10/07/2023Child Autism / Symptoms of AutismAutism affects different children in different ways and many children with autism appear typically developing in the early years, with autistic characteristics not becoming obvious until later in childhood. However, some children show signs of autism in the early years. Most children can be assessed for autism from around the age of 24 months, with the exception of children with significant global development delay. For children significant global development delay an autism assessment will usually not be suitable until they are generally functioning at a 24 month level.  Typical Development Typically developing children are very social by the age of 2 enjoying the company of others and interacting with adults. At this age children do not usually ‘play with’ other children but will be interested in other children and will play alongside them. Their language is developing at speed, by the age of 2 a child will normally have around 50 words and be beginning to put two words together to make statements and requests. They will be able to understand basic 2 step instructions, such as “Pick your cup up and put it on the table”. When looking at books or pictures, a typically developing 2-year-old will be able to point to familiar images that you name and also recognise the words for familiar body parts.  At around this age, children will begin to copy things that adults do and say and will be engaging in some make-believe play.  Usually, by the age of two, a child: Has around 50 spoken words Begins to use two-word sentences such as, “I go!” Can follow simple 2 step instructions Can find objects that are out of sight Points to objects or pictures that you name Enjoys being around others Begins to copy the actions and words of others Knows basic parts of the body Smiles socially Engages in some make believe play All children develop at different rates, and it is not unusual for a child to be a little later or a little earlier hitting their developmental milestones. It can be worrying for parents if their child is not following the usual developmental trajectory, and parents are often frustrated by others telling them that ‘they will catch up’. Many parents just want answers so that they can understand and respond to their child’s needs.  Signs of Autism in 2 Year Olds At all ages autistic children show a pattern of differences that impact social interaction and communication, involve restricted interest and / or repetitive behaviours and often involve differences in the way that sensory information is experienced.  Autistic 2-year-olds often (but not always) show a delay in the development of speech; a child may not yet be talking or the words they use may involve repeating someone else’s speech more than using their own words. You may notice differences in their non-verbal behaviours, for example not making eye contact or not waving goodbye or raising their hands to be lifted. The way in which 2-year-old play may be different, you may notice that they become preoccupied with a specific toy or activity and are reluctant to try something new. Autistic children can sometimes be seen to line toys and objects up in lines or be more interested in looking or touching part of an object such as spinning a wheel or stroking a doll’s hair. Autistic children can show mannerisms, or repetitive physical movements such as flapping hands, flicking fingers or spinning themselves around. Many autistic children have sensory interests such as liking to stroke, smell or taste people and objects. They may have sensory aversions and show distress or avoidance behaviours in relation to loud noises, strong smells or certain textures, for example. The way autism impacts each child is different, but common autistic traits that can be observed in 2-year-olds include: Using fewer than 5 words Repeating other’s words Not duplicating sounds when babbling (e.g. saying ba, but not baba) Babbling or using some words but not directing these to a person Grabbing an adult and pulling them to what they want, placing the adults hand on an object to make their needs known Not pointing to objects in the distance, but may touch and point Not being able to follow a point Not using gestures such as waving goodbye or blowing a kiss Avoiding eye contact Having a reduced amount of facial expressions, or facial expressions that only show extreme emotions Not responding when their name is called Not wanting to play social games such as pat-a-cake or ‘tickle monster’ Being uninterested in other people Not using toys as representations of real objects e.g. answering a toy phone, racing cars Not engaging in pretend play e.g. feeding a doll, putting a teddy to sleep Lining toys / objects up Sorting items e.g. by shape or colour Being more interested in part of a toy than the whole thing e.g. spinning wheels, stroking hair Enjoying repeatedly watch the same TV programme or part of a programme Spinning, bouncing or running back and forth repetitively Moving hands or fingers in a repetitive way Showing unusual sensory interests e.g. chewing things, smelling objects or people Having unusual reactions to sensory input e.g. becoming distressed at loud noise, avoiding strong smells Assessing for Autism in 2 Year Olds An assessment for a 2-year-old involves a direct observation with the child and gathering the developmental history from parents.  During the direct observation, a clinician will undertake lots of play activities with the child; they will be encouraging the child to show certain behaviours such as pointing or asking for more. If the child does not respond to the clinician’s encouragement, they may ask the parent to repeat their actions to see if the child will respond better to a familiar adult. The session takes between 40 minutes and an hour; after the session has been completed the clinician will document the behaviours that they have and haven’t observed. To gather the developmental history, a clinician will undertake a structured interview with parent(s). During this interview they will ask about early development and developmental milestones and will ask specific questions about autism traits or characteristics. When the team have all the information they need, they will review and discuss whether the child meets diagnostic criteria, or whether there could be another explanation for their differences. What are the Benefits of an Early Autism Diagnosis? Evidence shows that early intervention can improve outcomes for autistic children. By knowing the child’s specific strengths and differences, parents and others who support them can make sure they are supported to grow and thrive. Early diagnosis can also help with understanding what interventions may help (such as a speech and language therapy) and planning for early years education. Contact Us If you would like to explore an autism assessment for your child, contact us. We can usually undertake an assessment from 24 months. Free Enquiry [...]

Undertaking Your Autism Assessment Online

18/05/2023AssessmentsBackground When assessing whether a child or adult meets the diagnostic criteria for autism spectrum disorder the clinical team will analyse a wide range of evidence across the age range and consider whether the DSM5 criteria are met (see further article on diagnosis). At Veritas, we gather background information and information from other informants as well as undertaking the gold standard ADOS-2, ADI-r or RAADS-R assessment tools as part of the process. An autism diagnosis must be made by a clinical team who have reviewed a wide range of evidence, a diagnosis is never made based on a single assessment tool. Utilising Videoconferencing We always undertake parts of our autism assessment online; this is much more convenient for families and is much more environmentally friendly. Every autism assessment has a diagnostic history component, this means that an assessment tool is used to consider characteristics of autism that were present in childhood. We will either use the ADI-r or RAADS-R interview tools to gather this information, and this interview will be completed online via videoconferencing facilities. This means that individuals or families can log on from home to complete the session and if required, parents/individuals can log on from different households.  When undertaking the developmental history component of the autism assessment it is often useful to have access to photographs and items such as school reports or developmental milestone records to help with remembering behaviours in childhood; undertaking the assessment at home makes this much more convenient for families, who also benefit from not having to travel to the appointment. Is an Online Observation of Autism Symptoms Accurate? The other major component of an autism assessment is the direct observation. In many cases this can also be undertaken online, in the form of an online ADOS-2 assessment. The ADOS-2 is a gold standard assessment tool; it is a semi structured observation that allows clinicians to observe and code characteristics of autism. The ADOS-2 has five modules, the module that is used is chosen by the clinician, based on the age of the individual being assessed and their level of language. The toddler module, along with modules 1, 2 and 3 involve play based activities, it is not possible to fully deliver these online. The module 4 however, does not have play-based activities and the activities that are in the module 4 can easily be adopted for online administration. When administering an ADOS-2, the clinician will be administering the activities and questions whilst observing the behaviours and responses of the individual being assessed. They will be looking for things such as facial expressions and use of gesture and the overall quality and reciprocity of the interaction. These things can be observed on camera if delivering an assessment online. The delivery of online autism assessment became more popular during the COVID 19 pandemic, and many clinicians are now highly experienced in delivering assessments in this way. Some individuals and families have been understandably concerned about the validity of being assessed in this way. There have been a few small studies published previously which demonstrated that undertaking a ADOS-2 module 4 online was a valid option, now there is also research which supports this. A more robust piece of research was published early in 2023 by Cambridge University press on behalf of the Royal College of Psychiatrists. The research compared the outcome of 163 online ADOS-2 assessments with 198 in-person ADOS-2 assessments. The researchers found that there was no difference in the total scores between those who had undertaken the assessment online compared with those who had the assessment face to face. There was also no significant difference in the communication domain scores between the two groups. In both the online and the face-to-face group, the individuals who received an autism diagnosis had much higher scores than those that did not receive a diagnosis. The research also found that there was no difference between male and female scores when comparing the two, showing that the online ADOS-2 is equally useful for assessing female presentations. Who is the ADOS-2 Module 4 Suitable For? The ADOS 2 Module 4 is used for verbally fluent adolescents and adults, with the Module 3 being used for verbally fluent children and adolescents. The Module 3 involves some some play activities, whereas the Module 4 does not.  At Veritas we tend to choose to use the Module 4 for verbally fluent adolescents and preadolescents who (if typically developing) would have grown out of enjoying playing pretend games, and are able to cope with additional questions. We therefore typically would use a Module 4 from around the age of 12 upwards, but often children as young as 10 are able to cope with this module. Choosing Whether to Undertake Your Assessment Online or in Person Now that we can be sure that both methods of delivering the ADOS-2 Module 4 are valid, our clients can decide which is the best option for them. For many, an autism assessment can be very stressful, and this can be compounded by travelling to and visiting a clinic; therefore, an online assessment may be a better option for those who find new people and places significantly challenging. Online assessments also require less time commitment, due to there being no travel needed. We at Veritas find that things that bring the individual comfort at home can also help to decrease anxiety, we have had many a dog and cat join in our online sessions! Individuals will have personal preferences to consider when choosing whether to have an assessment online or face to face, and we respect our client’s choices.  We have a younger child, but could not attend a face-to-face session, what can we do? In exceptional circumstances, we can use the Brief Observation of the Symptoms of Autism (BOSA) protocol, as an alternative to the ADOS-2. The BOSA can be delivered online for all ages. The BOSA protocol sets out interactive tasks that are undertaken between a parent and child at home whilst a clinician observes via a video link. The tasks are straight forward, and parents can access a training video beforehand and will be coached by the clinician during the session.  If you have difficult circumstances that are acting as a barrier to accessing an assessment, we will be happy to talk through your options with you. [...]

Getting My Autism Diagnosis as an Adult- What it Meant to Me

12/05/2023Adult Autism / AssessmentsIn this blog, I will do my best to explain my journey to getting an autism diagnosis as an adult at 32. I want to express how I felt before getting my diagnosis, the events that led me to consider an autism assessment, my assessment experience and how I processed the diagnosis in the greater context of my daily life. I hope someone in a similar situation can read this post to help ease any potential anxieties or concerns about going for an autism assessment. You may also find it helpful if your loved one is currently going through this process.  Before going for an assessment  As a child, I distinctly remember not enjoying time with my peers. I didn’t have friends and was content organising my cars, drawing or tinkering with computers. I even opted to spend my lunch breaks in primary school organising the library books to avoid the rumbling mayhem of the playground.  I was the last to achieve handwriting skills in primary school. Although I excelled in maths, vocabulary, music and science, I struggled to make and maintain friendships. This left me feeling like an alien.  Moving on to secondary school only intensified the feeling that I was built differently from others. I would get frustrated by the interests of others and saw the magnification of interpersonal conflicts as a waste of time. Furthermore, the increased physical contact in crowded and noisy hallways led me to find solace in unused music rooms or leaving the grounds entirely.   During this period, I became increasingly irritable at home and even experienced bouts of depression due to the daily negative experiences. This led me to see many therapists who all failed to identify any basis for why the world and its people seemed so entirely unrelatable to me. I would explain to them that I felt like I had to wear a different mask for every social interaction and couldn’t justify acting as myself in front of others.  These issues continued into my adult life, where I struggled to understand the expectations of relationships and felt somewhat hopeless as I failed repeatedly. I also found working in roles that were public facing very difficult. I often questioned people’s motives for acting the way they did. I often wondered why I didn’t get it or what I was doing wrong like other people had a secret hidden rule book I had never read.  What led me toward an autism assessment  It’s fair to say I had no knowledge of autism until 5 or so years ago. I had never known why I found interactions so confusing, and many doctors in the past had tried to slot me into different diagnoses with no real success. I only became more confused and frustrated.  It wasn’t until I started working in an environment with people who understood autism that I could recognise that I may be autistic. Before working alongside professionals who had experience with autism, I would have been reluctant to accept the likelihood that I might be autistic due to my limited understanding.  As my awareness of autism increased and my understanding of how it can present in an individual, I decided to take an AQ50 and discuss my experiences with my GP. I was shocked to discover no simple way to determine whether you are autistic. There was no service available for adults in my area, and I found that I would have to be added to a longer waiting list for the county.  At this time, I decided to begin a search for a private autism assessment service.  How I felt during the assessment The fascinating assessment process provided little moments of discovery for my mother and me. It is fair to say that certain aspects of my behaviour as a child went almost unnoticed due to my academic achievements and ability to get on with things as long as there were no interruptions to my routine.  This contrasted with my sister, who was diagnosed with autism at a young age alongside her Learning Disability. Her emotional needs and inability to cope with changing environments led to a predictable and stable routine growing up. I didn’t experience difficulties until secondary school. As a result, my mum asked herself many questions about how she had unknowingly adapted to my requirements growing up, such as always carrying my collection of 46 Matchbox cars in her handbag. She had tried to take fewer out with me. Still, I would always do a rigorous inventory check whenever we reached our destination. In the scope of our household, being upset about something like this wasn’t unusual.  The part of the assessment I did by myself was pleasant and felt more like an informal meeting. I was stunned when I read the report that I had not managed to mask quite as well as I had thought. During my 20s, I learned several socially engaging strategies, some less valuable than others. However, despite my in-depth study of social patterns, I had missed specific ques during the assessment that, to this day, I couldn’t pinpoint.  Overall I found the assessment thorough and efficient.  How I felt after my autism diagnosis  After receiving my final report and feedback session, I was glad to find out that the clinician had included some recommendations and suggested reading to help me further understand my autism diagnosis. My family were supportive and read books and watched youtube videos to help them try to understand my diagnosis better.  After being diagnosed, I continued to learn more about autism symptoms. Such as burnout, masking and theory of mind. It still stuns me that people don’t understand everything I do and possess the same knowledge.  I do not have a large friend group, but I spoke to my close friend and was relieved by his response, “I think you are the last person to find out, mate, so don’t worry; it makes no difference”.  The most significant benefit of going through the assessment has been learning more about myself and how I process the world around me. This has helped me develop new coping strategies to help minimise my anxieties and stressors. Summary  I hope that sharing my experience of the assessment process could help those asking themselves similar questions and considering an assessment for themselves. Understanding my neurology better has helped me become closer to those around me and put less pressure on myself to fit in.  [...]

What level of autism does my child have?

12/04/2023Child Autism / EducationA common question we get asked, is “What level of autism does my child have?”. The DSM 5 (Diagnostic and Statistical Manual of Mental Disorders) is the handbook used by health care professionals across much of the world as the authoritative guide to the diagnosis of mental health issues and neurodevelopmental conditions. The DSM contains descriptions, symptoms and other criteria for diagnosing these conditions, ensuring a standardised approach to diagnosis. The fifth edition of the DSM was published in 2013. In the previous version of the manual (DSM IV), ‘autism’ or actually ‘autistic disorder’ was one of the conditions falling under the category of ‘Pervasive Developmental Disorders’, alongside Asperger’s syndrome, pervasive developmental disorder, not otherwise specified (PDD-NOS) and childhood disintegrative disorder (CDD).  The fifth edition, recognised the wide ranging impact autism can have on different people and replaced the above conditions with the umbrella term of ‘autism spectrum disorder’. With the removal of the specific diagnosis of Asperger’s syndrome from the diagnostic manual, the term ‘high functioning autism’ started to be used to describe certain autistic people. The term is not a medical diagnosis and is very misleading. It is often used to describe people who have average or above average levels of language and average or above average cognitive ability (that is, do not have an associated learning difficulty).  It has always been recognised that autism is separate from intellectual ability. Research has shown that there are many factors that contribute to an individual’s actual level of functioning, including: Communication Social interaction Motor skills Sensory processing Information processing Intellectual ability alone is therefore an extremely unhelpful way to evaluate someone’s level of functioning. The term ‘high functioning autism’ is inaccurate and misleading and therefore should not be used.  Rather than level of functioning, the DSM-5 uses 3 ‘severity levels’ to describe the support an individual requires, there are different descriptors for social communication and restricted, repetitive behaviours.  Social Communication ‘Severity Levels’ Level 1 – Requiring Support Without supports in place, deficits in social communication cause noticeable impairments. Difficulties experienced by individuals requiring this level of support may include: Difficulty initiating social interactions Struggles with responses to the social approaches of others Decreased interest in social interaction Difficulties making friendships Struggling to maintain to and fro conversation Level 2 – Requiring Substantial Support Marked deficits in verbal and non-verbal communication skills. Difficulties experienced by individuals requiring this level of support may include: Unable to use complex language Limited initiation of social interaction Unusual response to other’s social approaches Unusual non-verbal communication Limited range of conversational topics Level 3 Requiring Very Substantial Support Severe deficits in verbal and non-verbal social communication skills cause severe impairments in functioning.  Difficulties experienced by individuals requiring this level of support may include: No or limited level of speech Rarely shows interest in initiating social interactions Minimal social responses Most communication and interaction is related to meeting needs Restricted, Repetitive Behaviours ‘Severity Levels’ Level 1 – Requiring Support Inflexibility of behaviour causes significant interference with functioning in one or more contexts. Difficulties experienced by individuals requiring this level of support may include: Difficulties with changes, preference for same routine but not distressed by this Special interests that do not impact on other areas of life Difficulties planning and organising Repetitive behaviours that are not particularly obvious to others Level 2 – Requiring Substantial Support Inflexibility of behaviour, difficulty coping with change or other restricted / repetitive behaviour appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Difficulties experienced by individuals requiring this level of support may include: Distress in response to changes in routine Special interests impact on other areas of life Frequent repetitive motor movements that moderately impact functioning Moderate difficulties with unfamiliar people or places Level 3 – Requiring Very Substantial Support Inflexibility of behaviour, extreme difficulty coping with change or other restricted / repetitive behaviour markedly interfere with functioning in all spheres.  Difficulties experienced by individuals requiring this level of support may include: Extreme distress in response to changes Frequent repetitive motor movements that significantly impact functioning Repetitive behaviours cause self-injury Unable to cope with unfamiliar people or places Predicting Future Severity Levels in Children As children are developing, it can be difficult to predict how their autistic differences may affect them in the future. Autistic children often follow an unusual developmental trajectory. Some children experience regression in development, where as other children appear to plateau and then experience ‘spikes’ in development. Some children follow a very delayed developmental trajectory, such as Professor Jason Arday who was unable to speak until he was 11 years old and could not read or write until he was 18.  Whilst we know that the presence or absence of associated learning (intellectual) disability and language impairment can act as predictors for later life, there is no accurate way of predicting how a child will be impacted in the future. We do know that outcomes can be improved by early diagnosis and assessment because this helps the child and others around them understand why the child is different from their peers, and enables the correct support from health, education, social care and voluntary organisations to be accessed. [...]

Autism and Sensory Issues in Children

29/03/2023Sensory Issues / Symptoms of AutismSensory issues are common in autism, with one of the diagnostic criteria for autism being: hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment Some children and adults can be mildly affected by their sensory differences, whereas sensory issues can have a hugely debilitating impact on others. Sensory information is perceived through our senses and processed by our central nervous system.  The way in which sensory information is managed by our nervous system is referred to as sensory processing.  How Many Senses are There? Most people think of the 5 basic senses, but we actually have at least 8 sensory systems. The basic 5 senses are: Visual (sight) Auditory (hearing) Olfactory (smell) Gustatory (taste) Tactile (touch) We also have 2 other sensory systems that deal with position, movement and balance: Vestibular (balance and head movement)  Proprioceptive (body movement and position) The vestibular sense relates to the sensory information from the inner ear, sensing changes in the position of your head, dizziness etc. The proprioceptive sense relates to information conveyed from joints and muscles, relaying information about body movement, posture and position There is one more system, which deals with how we sense the internal state of our bodies, known as: Interoception This sensory systems tells us when we are hungry, tense or need the toilet amongst other things. With sensory differences seen in autism, all the senses can be affected.  Sensory Modulation Difficulties If an autistic child experiences sensory modulation difficulties, it means that they experience sensory stimuli either to a much greater degree than usual (known as hypersensitivity) or to a lesser degree than usual (known as hypo sensitivity) across any or all of these sensory systems. With hypersensitivity, the child may experience uncomfortable feelings in response to sensory stimulation, which may cause them to move away from or avoid the sensory stimuli.  With hyposensitivity, the child or adult maybe unaware or less aware of sensory input.  Some children and adults have a drive to seek out or increase (‘crave’) sensory input. These sensory seeking behaviours may help a child to feel calmer and more balanced.  Each autistic child will have a unique sensory profile, they may experience hyper-sensitivity in some areas and hypo-sensitivity in others; they may have hypo / hyper sensory issues in one or two areas but no issues in others.  Hypersensitivity may be heightened at times of stress and distress. A child’s sensory profile may change over time. Recognising A Child’s Sensory Behaviours Some children may be able to tell you about their sensory modulation difficulties, Other children will have difficulty in recognising or sharing their sensory issues, but you may be able to predict their issues from the behaviours they engage in such as putting hands over ears in response to loud noises, chewing or licking objects. Some examples of sensory seeking and sensory avoidant behaviours are outlined below: Sensory SystemSensory seeking behaviour(Hypo sensitive)Sensory avoiding behaviour(Hyper sensitive)SightLikes watching items that moveEnjoys watching light reflecting off objectsFinds patterns of light relaxingStruggles to locate an object amongst othersFinds sorting activities such as jigsaw puzzles difficultStruggles with readingDisturbed by bright lights, especially fluorescent lightningPrefers dark roomsFinds eye contact distressingStruggles to focus on objects for periods of timeSoundSeems not to notice certain soundsDoesn’t hear someone calling themStruggles to differentiate soundsUnable to identify source / direction of soundEnjoys listening to music through headphonesDistressed or annoyed by loud noisesDistressed or annoyed by certain noises and not othersCan hear things other people can’tDifficulty maintaining focus in noisy environmentsCan easily identify source of soundTasteCan’t differentiate between the tastes of different foodsEnjoys strongly flavoured foodsChews, mouths, licks or tastes objectsFamiliarises self with objects by tasting themEats inedible itemsHas a limited dietRecognises small differences in food such as knowing it is a different brandDislikes food touching on plateDislikes toothpasteWill not eat food of certain texturesTouchFamiliarises self with people or objects by touching themCalms self by touching, feeling or handling objectsDoesn’t notice when nose is runningDoesn’t notice the feel of cuts, burns or rashesPinches, scratches or bites themselvesDislikes being touchedExtremely sensitive to hair cutting and stylingDislikes being in close proximity to othersIrritated by seams, labels and new clothesDislikes feel of certain objects, materials and surfacesAnnoyed when hands are messy / dirtyDifficulties with washing, showering, bathing or brushing teethSmellDoes not smell things others can, doesn’t not recognised foods that have ‘gone off’Finds it hard to identify smellsUses smell to familiarise self with objectsSmells things others can’tBecomes distressed by certain smells, including food smellsFinds perfumes and perfumed products overbearing ProprioceptionWalks ‘heavily’ / noisilyBumps into objects, appears clumsyEnjoys heavy bedding and wearing tight or heavy clothesHigh pain toleranceFidgetsDifficulties using cutlery and writingStruggles to ride a bike Prefers loose / light clothes or not wearing clothesVery good balance, rarely falls overPrecise with activities such as handwriting or using cutleryVestibularEnjoys body movements such as rocking or spinningLikes to be on the move / difficulties staying stillEnjoys roundabouts, swings and trampolining  Prefers to stay still, distressed if lifted or swungPrefers to walk slowlyFeels uncomfortable in lifts or on escalatorsEasily becomes dizzy, dislikes roundabouts and funfair rides If a child is unable to share their differences with you, keeping a sensory diary can help you to find patterns in sensory responses that indicate hypo or hyper sensitivities. Supporting a Child with Sensory Issues You can support a child’s sensory issues by providing opportunities for sensory input for the child’s hypo sensitivities and helping to reduce input around their hyper sensitivities. Examples: Child becomes distressed around loud noisesProvide child with ear defenders to filter out loud background noisesChild is always trying to touch other people and stroke their hairProvide a selection of sensory / fidget toys, include a doll with long hairChild does not like the feeling of seams in their socks and refuses to wear themPurchase seamless socks and sprinkle some talcum powder in them before putting them onChild mouths objects and chews pencils in schoolTry a ‘chew buddy’ or other safe object for them to chew Filtering Sensory Information Filtering Autistic children often have difficulties ‘filtering out’ sensory information from the environment that is not directly relevant. Busy environments can cause particular difficulties, as there are multiple information sources to select from. Busy, sensory stimulating environments can provide stimuli though sight, sound, touch and smell. From music and conversations to busy wall decorations, the amount of information in the environment can be huge.   Not being able to filter out unwanted information, may lead to the brain trying to process multiple sources of information at the same time. This is not possible, and too many tasks causes stress and can cause overwhelm. The stress can cause a “fight or flight response”, and the overwhelm may cause ‘shutdowns’ and ‘meltdowns’.  A ‘shut down’ is when a child is forced to stop processing information so shuts off to the outside world. A ‘meltdown’ is when a child becomes so overwhelmed by information they lose the ability to self-regulate and self-control, the distress may be observed as a loss of control, aggression or uncontrollable distress.  Certain times of year, such as Christmas can be particularly distressing for autistic children. There are a number of reasons for this, one being the additional sensory stimuli in the environment. Maintain a Low Stimulus Environment If a child becomes overwhelmed with sensory information, it will help to create a low stimulus environment. Maintaining a low stimulus environment will help an autistic child to feel calm, and improve their ability to focus on interests, actions or interactions. Some adaptions that can help reduce environmental stimuli are: Neutral walls, with minimal decor such as art and photographs Putting things away, keep it neat and tidy Plain, pattern free flooring Natural or dimmed lights rather than bright or fluorescent lighting Window blinds to reduce bright sunshine Using extractor fans to reduce smells from cooking Limited people Reduce noise, no or low sound TV and music At times, or in areas, where limiting sensory stimuli is difficult (such as school activities or when on holiday) a sensory neutral space should be made available. Your child should be able to use this space to take some time out from stimulation and calm themselves. This space could be a quiet room, or even a pop up tent in a quieter area.  [...]

Will a Private Autism Assessment and Diagnosis be Recognised?

27/03/2023Assessments / Practical AdviceOne of the many considerations that individuals thinking about a private autism assessment have is whether the assessment and subsequent diagnosis will be recognised by public services, such as the NHS and Local Authority SEND Services. In order for a private diagnosis to be recognised or accepted by public services, it must be robust and of the same standard of an NHS autism assessment or above. The National Institute for Clinical Excellence (NICE) produces evidence-based recommendations for health and care in England and Wales. The NICE guidelines outline best practice for the diagnostic assessment of autism, the guidelines are followed by the NHS. NICE guidelines for the diagnostic assessment of autism outline that an autism assessment should: be coordinated by a case coordinator who is the single point of contact be undertaken by a multi-disciplinary team gather information about current concerns gather details of the child’s or young person’s experiences of home life, education and social care include a developmental history include an individual assessment of social and communication skills and behaviours through interaction and observation NICE also recommend that professionals consider using structured assessment tools such as the ADOS-2, ADI-r or RAADS-R. Public bodies should accept a private assessment which is compliant with NICE guidelines and is supported by a full report outlining the evidence gathered and rationale for the diagnostic assessment. NHS Services Individuals are entitled to access private assessment and treatment if that is their preference or wish. Guidance developed by the Department of Health for NHS patients who wish to pay for additional private care Department of Health clearly states that where a patient opts to pay for private care, their entitlement to NHS services remains and may not be withdrawn. Patients have the right to pay for additional private healthcare while continuing to receive care from the NHS, who state that when opting for private care ‘you should not need to have any of the same tests twice’.  A robust autism assessment and thorough report will provide enough information for the NHS to recognise the diagnosis. Requesting an Education, Health and Care Needs Assessment  (Children and Young People in England) The duties that education, health and social care have toward children and young people with special educational needs (SEN) and disabled children and young people in England are outlined in the statutory guidance SEND Code of Practice (2015). The Code of Practice outlines the duties, policies and procedures relating to Part 3 of the Children and Families Act 2014 and associated regulations. The guidance outlines how local authorities should work in partnership with health, social care, parents and young people to ensure that children and young people with SEND are identified and that their needs are met. It also provides guidance for early years settings, schools, and colleges around the identification of and response to a child’s SEND needs. If your child’s school think that your child requires special educational provision, they may have mentioned requesting an Education, Health and Care Needs Assessment (EHCNA). This is also something that parents can request. An EHCNA is undertaken so that the local authority can understand whether the child needs special educational provision to be secured via an Education, Health and Care Plan (EHCP).  The process for requesting an EHCNA and for deciding whether to issue an Education, Health and Care Plan (and the timelines for this) is also outlined in the SEND Code of Practice (2015). The guidelines state: When considering whether an EHC needs assessment is necessary, the local authority should consider whether there is evidence that despite the early years provider, school or post-16 institution having taken relevant and purposeful action to identify, assess and meet the special educational needs of the child or young person, the child or young person has not made expected progress. To inform their decision the local authority will need to take into account a wide range of evidence, and should pay particular attention to: information about the nature, extent and context of the child or young person’s SEN evidence of the child or young person’s physical, emotional and social development and health needs, drawing on relevant evidence from clinicians and other health professionals and what has been done to meet these by other agencies Therefore, your private autism diagnostic report can be submitted as supporting evidence within your request for an Education, Health and Care Needs Assessment. The Local Authority SEN Team make decisions regarding the statutory assessment process. Parents have a right to appeal decisions made by the Local Authority. When a parent appeals to the first tier tribunal, they will be asked to submit evidence. A private autism assessment can be submitted as evidence and must be considered as part of the appeal. Requesting an Individual Development Plan (Children and Young People in Wales) The Additional Learning Needs Code for Wales 2021 provides statutory guidance on the system in Wales for meeting the ALN of children and young people, relating to the Additional Learning Needs and Education Tribunal (Wales) Act 2018. Education providers are expected to identify, and respond to, the needs of learners with ALN. The code places a decision making duty on every maintained school in Wales with regard to school age children, and on the Local Authority for children below school age. When a school (or Local Authority) identifies, or is made aware, that a child or young person at the school may have ALN it must decide whether that child or young person does actually have Additional Learning Needs. If after considering the evidence the school (or LA) decides the child does have additional learning needs, the school (or LA) must prepare an Individual Development Plan (IDP). Parents can request that a school (or Local Authority) issue an Individual Development Plan, the school must respond to this request by considering whether the child does have ALN. Your private autism assessment report can be submitted as evidence as part of the request. A private autism assessment can also be used as evidence if parents disagree with the school’s decision, including as part of an appeal to The Education Tribunal for Wales. Paying for an Autism Assessment The number of individuals awaiting an NHS autism assessment continues to grow exponentially, there are currently around 140,000 people on NHS waiting lists. Sadly, the less typical presentations of autism are still not being picked up by front line professionals, meaning that some autistic children and adults are not even being referred for assessment. As recognition improves, we can only expect longer waiting lists. As a result of the current pressures, more and more people are investing in private autism assessments for their children or themselves. An autism diagnosis can make a huge difference to both children and adults and can aide in being able to access the right support. If you are considering investing in an autism assessment, get in touch with our friendly team today. [...]

What are the signs of autism in girls?

27/03/2023Symptoms of AutismAutism is more prevalent in boys than girls, and it is often questioned whether this is a true figure or whether the signs of autism are overlooked more often in girls. At Veritas assessments we see many girls and women whose autistic differences have been missed. We work with children and adults of all ages, but commonly see females presenting in their early 20’s. They will usually be finding life difficult and will have been diagnosed with anxiety and / or depression. These clients describe a similar pattern of difficulty which includes heightened difficulties at the ages of 11 -14 (coinciding with the transition to high school). The core characteristics of autism are the same in males and females, and include: Difficulties with social interaction Lack of interest in, or difficulties with relationships Communication differences along with a pattern of repetitive and restricted behaviours and interests such as: Highly focussed interests Repetitive behaviours Sensory differences Whilst the characteristics are the same for boys and girls, they may not be so obvious in females. Girls and woman tend to ‘camouflage’ or ‘mask’ their difficulties, meaning that they will copy other’s behaviours to ‘blend in’ and to try and be seen as similar to their peers. Doing this is exhausting, and autistic girls will often limit their social interaction in order to cope with this. They may manage one or two friendships but may not be able to interact with groups or may choose to limit their social relationships to times when they have no choice to interact (for example having social relationships that only exist in school). Difficulties with social interaction and relationships Early Years Parents of autistic girls often describe the early years as unremarkable. Their daughters appeared to develop typically and developed speech at the expected time. Some describe their daughters being very shy as a young child whilst others describe a bossy child. The ‘shyness’ is often caused by the child not knowing how to interact with others or being worried about not knowing what is expected of them; the ‘bossiness’ has the same cause, with the child trying to control situations so that they are predictable and manageable. Autistic girls do often engage in some imaginative play which can also lead to autism being missed. Imaginative solitary is often restricted or repetitive, but not obviously so. Connie likes to play ‘school’ with her teddies. When she plays it looks like she is coming up with novel ideas as she plays with the teddies, her parents and teachers report that she plays imaginatively. When Connie plays, the blue teddy is always the teacher and the teddies are always sat in the same positions. The scenes that Connie plays out with her teddies are based on things that have happened that day in school, Connie observes others throughout the day and picks up on a lot of interactions between others, so she has lots of examples to use in her play. She chooses her own outcomes though, so it is not obvious that she is re-enacting the school day. If we observe Connie we can hear her talking to her teddies, she talks as if she is the teacher and as if she is the pupil; but she does not use the teddies as agents of action. This means that when the teacher is telling the pupils off, Connie is not only saying the words but she is pointing her finger at the pupils, she does not move the teacher teddy as if the teddy is telling the pupils off. When she is finished with her game, she places the teddies back on her bed in the same order each time. She does not play other games with them. When playing imaginative games with other children, autistic girls will either take a passive role or take charge of the play. Taking a passive role means that the other children will tell them what to do, so they can play along without needing to use novel responses as they go. They may choose a more passive role in the play, for example if playing ‘house’ or ‘family’ they may choose to take on the role of the pet so that they avoid social interaction. Taking charge of the play means that they can limit the play to situations and interactions they are familiar with; they may try telling the other children what to do or what to say so that they can use well-rehearsed responses within the play. We often hear that whilst girls do play imaginatively, they will often choose activities that do not require social imagination although can be creative. Autistic girls often love Lego, arts and crafts or cooking. They may prefer to make clothes for their dolls or to style their hair rather than use them in pretend play. Primary School Sometimes autistic girls have difficulty with starting school, they may be ‘clingy’ and not want to separate or have somatic symptoms such as tummy pain when it is time to go to school. Other girls enjoy primary school and can’t wait to go in every day. Due to the nature of primary schools, children spend their school years with the same pupils and it is therefore easier for them to develop friendships. As has been mentioned previously, they may take a passive role in play and friendships or may try and take control of these. The child who tries to take control may experience frequent arguments within friendships due to the other children not wanting to follow their directions all the time. Autism is often seen alongside dyslexia, so there may be some issues with reading and writing; other autistic girls have no particular issues with school work. During the primary years, parents and teachers are often unaware of how the child’s social difficulties are impacting them and therefore do not have any concerns. However, our clients often tell us that they felt on the outside of things in primary school and felt different to others there. Secondary School The transition to secondary school is anxiety provoking for all children, and during the initial transfer autistic girls often do not appear to have anymore difficulties than their peers. During the first weeks the children will be supported by staff to navigate the school, lessons and expectations; groups of friends from primary school will stay together, find classrooms and share lunch together. As the weeks go on, the children become settled and the noise level starts to increase; this can cause difficulties for autistic children. School buses, dinner halls and hallways can be a particular issue. After a few months, the new year 7’s become comfortable with the new way of learning and shift their focus from school rules and lessons to social interaction. Their friendship groups from primary school start to disintegrate and new friendship groups are formed. It is at this point that autistic girls start to find things hugely difficult, especially if they do not have a diagnosis and are not supported. At this point and over the next couple of years, the undiagnosed autistic girl will tend to really struggle with social interaction, making friendships and feeling as if they are ‘on the outside’ of friendship groups. They may begin actively ‘camouflaging’ or become socially avoidant or both. When ‘camouflaging’, girls will study their peers intently and attempt to copy their behaviours and even pretend to like the things that they like in order to fit in. They may want to dress like them, style their hair like them or do the things that they do. When copying others, girls manage their social interactions through a set of ‘rules’ that they have created based on their observations. This is cognitively exhausting and parents may notice that they need to spend time alone when they return from school in order to recover from this. Girls who ‘mask’ or ‘camouflage’ will copy lots of different peers as they progress through school, this in turn can lead to difficulties with understanding who they really are and what makes them tick when they get older. Many girls are left with lifelong difficulties with self-esteem and self-acceptance because the fact that they were autistic was not recognised. For some girls the anxiety around school can become so overwhelming they start to try and avoid the situations that cause them distress all together. This can range from them not wanting to travel to school on the bus, choosing to go to the library or another quiet area during lunch or break times or refusing to go to school. Sometimes, they will have a friend who makes things more manageable for them and will only go to school when they are in school, or in lessons with them on that day. Whether socially avoidant or camouflaging and not getting it quite right, undiagnosed autistic girls can be a particular target for bullies. Trauma from bullying can have a significant impact in later life. As undiagnosed autistic girls get a little older, their difficulties and negative experiences can impact their self esteem and self confidence. As they are not aware of their autistic differences, they can experience depression and anxiety, and these diagnoses are often used as an explanation for their difficulties – meaning that autism is overlooked again. Communication Differences in communication can be hidden due to the child masking their difficulties throughout their life. There is often a difference in the way the child communicates at home due to them being more relaxed and comfortable. Some of the characteristics of communications differences in autistic girls are: Unusual eye contact This could be avoiding eye contact, giving too much eye contact or not using subtle changes in eye contact to communicate with others. Facial Expression Differences might be having a mostly neutral or ‘blank’ facial expression, looking sad or happy most of the time (even when the situation or topic changes) or not coordinating facial expressions with speech and eye contact. Gesture Difference might be not using gesture when talking, not being able to describe something (such as size or motion) with their hands or using over-exaggerated gesture that distracts others. Restricted and / or Repetitive Interests Restricted and repetitive interests may not be obvious in autistic girls. The girl may have restricted or repetitive play as described above. They may enjoy a hobby such as drawing or writing intently, whilst on the surface this does not appear unusual, they spend a lot of time enjoying this and may not spontaneously share their work with others. Autistic girls will often like to collect things; colourful erasers, semi-precious stones / gems and make-up are common collections. They may like to watch the same TV programme or spend lots of time watching YouTube videos about a specific subject, this could range from factual documentaries about specific animals to make-up tutorials. The child may have interests that do not appear in keeping with their age range, for example wanting to learn details about outer space at a young age or collecting cuddly toys when a teenager. Restricted and Repetitive Behaviours Again, these might not appear obviously unusual. The child may like to do things in certain ways, such as following a specific routine to get ready, or when they return from school. Repetitive behaviours might be subtle such as repetitively stroking or pinching their thigh, twisting their fingers or fiddling with their hair or earrings in a repetitive way. Sensory Differences Sensory differences can vary over time, the sensory differences could mean they seek sensory input or they avoid sensory input or a mixture of both. Sensory seeking behaviours could include behaviours such as stroking a doll’s hair, stroking or wrapping themselves in a fluffy blanket, bouncing or watching patterns of light. Sensory avoidant behaviours might include placing their hands over their ears in response to loud noises, fussiness with food, refusing to use escalators or needing labels to be removed from clothes. Adulthood After school undiagnosed girls continue to struggle. They may find a job or go to university but continue to struggle with the social side of this. They may experience levels of social anxiety that stop them from following their dreams and goals. At this point of independence the young women often start to look into their difficulties and notice a pattern of differences that could be explained by autism and refer themselves for an assessment. Our clients are often faced with long waiting lists, or difficulty getting referred for an assessment so opt for a private assessment instead. [...]