Private Autism Assessment: What is it and will it be accepted by the NHS
This 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?
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
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 [Accessed: 12 March 2024]
EHCP Assessment SNJ’s “Get started” Checklist. 2011. Special Needs Jungle. Available at: https://www.specialneedsjungle.com/ [Accessed: 12 March 2024]
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 [Accessed: 12 March 2024]
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 [Accessed on: 12 March 2024].
UK Public General Acts. 2010. Equality Act 2010. Available at: https://www.legislation.gov.uk/ukpga/2010/15/contents [Accessed on: 12 March 2024].
Categorised in: Practical Advice