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

In 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. 

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10/07/2023UncategorisedAutism 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. Contact Us [...]
18/05/2023UncategorisedBackground 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. [...]
12/05/2023UncategorisedIn 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.  [...]
12/04/2023UncategorisedA 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. [...]
29/03/2023UncategorisedSensory 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.  [...]
27/03/2023UncategorisedOne 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). Child in therapy sensory stimulating room, snoezelen. Child interacting with colored lights bubble tube lamp during therapy session. 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 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. [...]
27/03/2023UncategorisedAutism 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. [...]