Should I seek a formal autism assessment? 

Reflections on diagnostic assessments for autism, from an autistic diagnostician’s perspective.

Written by Huarda Valdes-Laribi

Many people are not able to access autism assessments in a timely manner in the UK unless they pay for a private assessment. This post collects some thoughts that will hopefully help you decide whether you or your child really do need a formal autism assessment.

There is no doubt that there has been an unprecedented rise in autism assessment referrals in the past few years. In the UK, state-run services (NHS) have not managed to keep up with demand, and there are thousands of people awaiting an autism assessment. According to NHS statistics, in June 2024 there were 193,203 open referrals for autism, most of which had been waiting for over three months, and these numbers are very likely to have increased since then. The waiting lists in many areas of the country have reached years rather than months, and the popular Right to Choose providers have been inundated with demand.

Because this topic has been discussed at length in various media outlets more recently, I cannot omit talking about prevalence here. When I first started working with autistic children, we were taught that autism was a “rare disorder”. The prevalence rate for autism in boys aged 8 in  the UK in 2004 was 3.58 per 1000, and girls were one fifth as likely to be diagnosed as boys, with a prevalence rate of 0.80 per 1000 (Taylor et al., 2013). Fast-forward to 2021, and the national English prevalence for boys was 2.81 per 100 (not 1000!) and for girls 0.65 per 100 (Roman-Urrestarazu et al., 2021). The latest statistics for the USA based on data from 2022 indicate that 1 in 31 eight-year-old children is autistic, with 3.4  times more boys than girls being diagnosed (Shaw et al., 2022).

An in-depth analysis of the reasons for this rise in autism prevalence is outside the scope of this post. Suffice to say that the diagnostic criteria have evolved over the years, as has our understanding of the range of presentations of autism and general awareness in society. It would seem that the rise in prevalence is due to a better identification of autism rather than an actual increase in numbers.

I have conducted autism diagnostic assessments for the past 7 years, and I have been working with autistic children, young people and adults for over 20 years. Over this period of time our understanding of autism as a society and as professionals has evolved and our lenses have dramatically shifted.

When I was first taught about autism during my Psychology undergraduate degree, it was presented as a “disorder”, which could affect people to various degrees of “severity”. “Treatments” were sought to make autistic children indistinguishable from their peers, and there were no discussions around the mental and physical health dangers of compliance and behavioural training.  Autistic people were thought to be “trapped” inside their world, they were enigmas to unlock, puzzles to solve, tragic lives to save. If you would like to learn more about how autism has been seen across the years, the excellent book by Steve Silberman “Neurotribes” gives an in-depth analysis of the history of autism. In many ways, these outdated and false views of autism have persisted for whole pockets of society, even today. Sensationalist media reports, ill-informed and ableist politicians and misguided professionals all feed into the pathologising stories we tell about autism. These views are dangerous, not only to autistic people and their families, but to the very fabric of society. Our society relies on the diversity of human minds to thrive, and the pathology paradigm not only contributes to dehumanising autistic people, but also robs us of the strengths and gifts that neurodiversity brings to our world. To this day, most people think of a white young boy with a stereotypical presentation of autism when they think of autism. The reality is far more complex and beautifully nuanced.

Autism is not a disease, a disorder, a mental health illness or a tragedy, although many autistic people and their families experience challenges and we often need accommodations and disability supports. Many of us are disabled by both the world we live in and the way our minds and bodies function. Autism in itself is not a superpower either, although some autistic people do refer to their specific traits as superpowers or gifts, and that is of course a valid view for them to hold.

Autism is a neurotype, a difference in the way we think, feel and do, which means that it is simply a collection of different human traits that together make up what we call “autism”. Autism is a spectrum, which means that no two autistic people experience being autistic in the same way. Think of it as a colour spectrum, rather than a scale of severity. One autistic person may have significant sensory sensitivities and enjoy spending most of their time on their own, another autistic person may seek sensory input and enjoy going to events with crowds of people. One autistic person may be extremely attuned to others’ emotional states and another may need explicit teaching to identify others’ emotional states. Furthermore, autistic people fluctuate from day to day in their capacity and needs, which means that the same person will need varying levels of support for the same task depending on the day.

Although autism is not a disorder, as a (Western) society we have adopted a series of criteria that define what autism is to an outside observer. These criteria have been compiled into two diagnostic manuals which are used in the UK, where I practice: the DSM-5 and the ICD-11. These manuals have been updated with a more current understanding of autism, however they are still inherently pathologising (“disorder/disease” is part of their titles!), and they are firmly rooted in the medical model of disability. As a diagnostician, I use the diagnostic criteria from these manuals when deciding as a team whether an individual is autistic or not. These diagnostic criteria outline certain patterns of behaviours to look out for, however autism is not always observable at first glance to the untrained eye, especially for “internalised presentations” or high-masking individuals. A good diagnostician will always seek to understand the person’s internal experiences in addition to the observable behaviours, and the diagnostic criteria allow for this.

A formal diagnostic assessment for autism should consist of a rigorous and multidisciplinary investigation of an individual’s experiences and behaviours based on direct observation and developmental history across contexts. A diagnosis should not be given lightly, and it usually involves in-depth discussions of alternative explanations for the individual’s profile, such as trauma or other neurodivergence. There are however other routes to identifying one’s neurotype. Many people choose to forgo a formal diagnosis for a variety of reasons, and have self-identified as autistic after long and in-depth explorations of their life experiences.  In my view, these people are just as autistic as those with a formal diagnosis.

Now that you have some background, I will address the question that led me to write this post. What are the benefits of pursuing a formal diagnostic assessment, and what are the pitfalls? Let’s start with listing some of the benefits of identifying whether someone is autistic, whether through formal diagnosis or self-identification:

• Self-understanding and acceptance. Without the knowledge of your own autistic neurotype, you may spend your life thinking you are broken and trying to fit in or push through ill-adapted situations, which can then have a significant impact on mental health and life opportunities.
• Having a name for your experiences. Autistic people are often given many other unhelpful labels, such as slow, weird (negative connotation), lazy, rude, obtuse, rigid, etc. When we replace those with labels with “I am autistic” and change our perspective, we also replace the negative self-view that came with all the other labels.
• Implementing changes / adaptations to the environment. With the knowledge of your needs, you have a greater ability to modify your environment to adapt to those needs. You can think outside the box to find ways to live that suit you rather than suiting the majority neurotype. You would not provide the same environment to a desert plant as you would to a rainforest plant, similarly an autistic mind will thrive under different conditions to a non-autistic (allistic) mind.
• Self-advocacy. When you have a greater understanding and acceptance of how your mind works, you are also more able to advocate for your needs, which in turn leads to increased well-being.
• Helping others understand your differences. Identifying that you or your child are autistic also means that you can help others (teachers, coworkers, friends) to change their perceptions and adapt their own behaviours.
• Finding “neurokin”. Many autistic people find it helpful to understand their neurotype so that they can actively seek community and support from people with similar neurotypes.

What are some of the benefits of a formal diagnostic assessment?

• Differential diagnosis accuracy: Sometimes as parents or individuals seeking an assessment for ourselves, we may miss part of the bigger picture. Professionals who carry out diagnostic assessments may not have in-depth knowledge of your own experiences, but they are supposed to have in-depth knowledge of human development and alternative explanations to your differences. If for example your child’s differences or your own differences can be better explained by another neurotype, e.g. developmental coordination disorder (dyspraxia) and/or developmental language disorder, it is important to find out. You or your child may need very different adaptations and support.
• Official validation of you or your child’s neurotype to access services or benefits. An official diagnosis is sometimes needed to access certain services and benefits and to show employers. However it is important to note that most services and benefits are not diagnosis-led, but rather needs-led. This makes sense given that autistic people’s needs vary widely. School support (including EHCPs) is not diagnosis-led and it is very unfortunate that families are being given false information regarding the need for a diagnosis before being given access to support. The definition of a disability in UK law also means that a diagnosis is not strictly speaking necessary to qualify as disabled. However the reality is that many services do not follow this and ask for proof of a formal diagnosis.
• Legal protections as a disabled person. Autism in UK law is considered a disability. This means that with an official diagnosis you or your child will automatically have an additional layer of protection in case of discrimination , and it will be easier to prove this with a formal diagnosis.
• Strengths and recommendations: An exploration of you or your child’s profile of strengths and needs. Having a neutral outside observer explore your struggles and strengths with you can be very helpful to identify areas that you may not have spotted before. A formal diagnostic assessment can also help you to identify recommendations for support in the workplace or educational setting, and can be used to communicate with professionals and explain your child’s or your own profile of needs.
• External validation. For people who already self-identify as autistic, having the validation from an external source can feel important. Some people may have been told that they can’t possibly be autistic by family or friends. Many people, myself included, feel that they need external confirmation to put their minds at ease. Although I am a diagnostician myself, I was keen to obtain the official confirmation from an external team to be 100% certain that my experiences and observations did correspond to autism and could not be better explained by other aspects of my development.
• Feeling seen. You or your child may finally feel seen after years of not being believed or heard. The relief that someone else, a professional, has seen the same things that you have seen can be immense. It can also be a very joyful shared experience for both the assessor and the autistic person being identified. I have many examples of wonderful moments of connection and “aha” moments with the children, young people and adults I have assessed. It can also feel like a relief to know that the assessor has heard and felt similar experiences from countless other people before you. It can be the first step to realising that you are not alone in your experiences.

What are some of the disadvantages of a formal diagnostic assessment?

• The stress, time and energy involved in an assessment. Autism assessments can involve a great deal of energy and time for you or your child, and by their very nature they will bring up potentially difficult topics and emotional areas for you and/or your child. If you have a neurodiversity-affirming team, the experience should not feel pathologising, but it will by definition focus on the areas that you or your child struggle most with, and this may be tricky to manage. This is why most diagnostic teams have strict criteria around risk management, and will not agree to assess someone who is in a mental health crisis.
• Potential for finding out you or your child are autistic. Even if you have been expecting this outcome, everyone responds differently to the diagnosis of autism. You or your child / family may find it challenging to hear this diagnosis and you may need support to process the confirmation of diagnosis.
• Potential for finding out you or your child are not autistic. If you have self-identified as autistic for years, and the assessors conclude that you are not in fact autistic, what impact will this have for you? What will you do if you find out that you are not autistic? To reduce the difficulty of this experience, it is worth ensuring (if you can!) that you work with a diagnostic team who you fully trust to understand your experiences and who will be able to support you with compassion, curiosity and care after your assessment.
• Stigma and discrimination. As mentioned in the first part of this post, autism is still very much misunderstood. Autistic people are a marginalised minority group across most of the world. In some parts of the world, and indeed some pockets of society in the UK, it is dangerous to be identified as autistic, particularly if you are trans, black or brown. These same groups may face additional stigma and barriers to care from healthcare systems. Of course it is always your choice to disclose whether you are autistic, and if you do not have the privilege to mask/camouflage your differences, a formal diagnosis will not make any difference to how other people treat you. However it is important to consider whether you want to have an autism diagnosis in your official health and social care records.
• Potential restrictions for certain jobs and/or immigration purposes. Some jobs do not allow autistic people to join their ranks, and some countries do not allow autistic people to immigrate. The current global political rhetoric around autism and disability may also be a reason to think carefully before seeking an official diagnosis.
• Consent.  If you are considering an autism assessment for a child or young person, it is important to consider whether they would consent when they are older, or whether they have consented if they have the capacity to do so now. Some parents I have spoken to have decided against seeking an official autism assessment for their very young child, because they would like to ensure that their child is able to give informed consent before agreeing to a formal assessment. This is an important consideration and one that has led my team to cut short some autism assessments with teenagers who have been clear that they are not ready to find out if they are autistic, or indeed who have clearly said that they have felt coerced into going down the assessment route to obtain support. As mentioned above, support should be accessed with or without a diagnosis, and informed consent is paramount, particularly for this age group. This does not mean that you cannot explore your child or young person’s neurotype informally, and indeed it is still important to do so for all the reasons listed in the “advantages” section.
• The monetary cost of the assessment, if you are paying for a private assessment. Consider whether this money may be better invested in paying for support or therapy services if you have limited resources.
• Some people prefer not to engage at all with diagnostic labels for a variety of reasons, whether they feel that these categories are a product of a socio-political / medical framework which they do not agree with, or they feel limited / constrained by these diagnostic categories, or indeed many other reasons. The question of a formal diagnosis may not even arise in those cases. Anecdotally, many people who do seek a formal assessment have shared with me that they would have preferred not to feel the need for any kind of classification of their profile but that they hope it will be useful for communicating with the outside world and accessing support.

When deciding whether to seek a formal autism assessment for yourself or a loved one, please take the time to consider all these points (and more!) before taking the (metaphorical) plunge. Most diagnostic teams do not have the time for an in-depth discussion of the pros and cons of a formal diagnosis with families, and each family will have their own unique set of circumstances that determines their choices and path. Don’t hesitate to ask the diagnostic team you will be working with about these issues if you are hesitating. One option is to explore your experiences informally with a professional, for example during an initial screen consultation, which should allow you to make an informed decision about whether to seek a full assessment. This is why we are keen for our service’s initial screen consultations to be standalone appointments that do not tie you into the full assessment process.

In addition to all of the above, it is important to acknowledge that a formal diagnostic assessment is simply not accessible to many people around the world. In the UK, despite the existence of the NHS, as mentioned above, waiting lists and barriers to healthcare particularly for minority groups mean that many people will not have access to a formal assessment even if they would like one. It would also be amiss of me not to mention that intersectionality is a major factor in autism identification. This includes minority ethnic groups, sexual and gender minorities and disadvantaged socio-economic backgrounds. People who come from minority backgrounds are at a particular disadvantage when it comes to access to healthcare, and are also those who have the least support for their difficulties.

And finally, it is important to acknowledge another group of people who do not have the privilege of even considering whether they should be formally assessed, simply because their profile of needs is/was so visible that the decision has been made for them by external agents. Often these are individuals with co-occurring needs such as intellectual disabilities and/or apraxia of speech. Whether a diagnosis should be given to someone in this situation is often not even part of the picture, instead they are usually diagnosed early on. In this respect, being in the position to wonder whether a diagnosis should be sought at all can be seen as a privilege in itself.

My hope is that in future years we will see a shift to a truly needs-led and neurodiversity-affirming system, where neurotypes will not need to be “diagnosed”. Of course I am a proponent of being given the tools and ability to explore and understand one’s own mind and neurotype. My hope is that diagnostic categories within a medical model / pathology paradigm will be replaced by the identification of profiles of needs and support systems put in place for those needs. I wish for a world where our children will grow up with the views that being autistic or ADHD or dyslexic or any other neurotype will simply be another part of what makes them unique and valued members of society. We still have a long way to go, but we are already one step closer than we were when I first started working with neurodivergent children all those years ago.

If you would like to find out more about autism to help you make an informed decision, I have included some links to free resources below.

• Reframing Autism’s page describing autism in children and adults: https://reframingautism.org.au/about-autism/
• The National Autistic Society’s page on common reactions after diagnosis: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/after-diagnosis/how-will-i-feel-after-receiving-an-autism-diagnosi
• The Autistic Girls Network has a helpful free downloadable pdf describing internalised profiles of autism: https://autisticgirlsnetwork.org/product/autism-girls-keeping-it-all-inside/
• Regarding the rise in autism diagnoses, Dr Megan Anna Neff offers an exploration in her blog: https://neurodivergentinsights.com/rise-in-autism-diagnoses/

References:

Roman-Urrestarazu A, van Kessel R, Allison C, Matthews FE, Brayne C, Baron-Cohen S. Association of Race/Ethnicity and Social Disadvantage With Autism Prevalence in 7 Million School Children in England. JAMA Pediatr. 2021;175(6):e210054. doi:10.1001/jamapediatrics.2021.0054

Shaw KA, Williams S, Patrick ME, et al. Prevalence and Early Identification of Autism Spectrum Disorder Among Children Aged 4 and 8 Years — Autism and Developmental Disabilities Monitoring Network, 16 Sites, United States, 2022. MMWR Surveill Summ 2025;74(No. SS-2):1–22. DOI: http://dx.doi.org/10.15585/mmwr.ss7402a1

Silberman, S. (2015) Neurotribes: The Legacy of Autism and the Future of Neurodiversity. Avery, New York.  https://doi.org/10.1353/anq.2015.0057

Taylor, B., Jick, H., & Maclaughlin, D. (2013). Prevalence and incidence rates of autism in the UK: time trend from 2004-2010 in children aged 8 years. BMJ open, 3(10), e003219. https://doi.org/10.1136/bmjopen-2013-003219

Latest NHS data on autism: https://digital.nhs.uk/data-and-information/publications/statistical/autism-statistics