There are fewer adults diagnosed with autism than there are children. 

What is stopping autistic adults from seeking their diagnosis?

Here I will talk about the five top barriers to autism diagnosis in adults. 

Surprisingly, the lack of face-to-face appointments due to the COVID-19 pandemic was not one of the barriers. Sadly, the barriers are more permanent and harder to overcome.

I got my ASD diagnosis when I was 28 years of age. It was a long journey for me to get my diagnosis. I went through different therapies and psychologists over many years. Nonetheless, my determination to better understand myself made me continue to try to find answers to my condition.

However, sometimes autistic adults give up on their journey of getting their diagnosis because of how challenging it can be.

A recent research study on autism diagnosis in adults showed that adults sought out a diagnosis because they wanted both explanation and support.

However, five system barriers stop many adults from pursuing a diagnosis. Here I will briefly explain what these barriers were.

1. Social masking

There is a myth that children outgrow autism because many autistic people learn to “mimic” or “copy” neutortypical (not autistic) body language and behaviour.

In other words, many autistic adults have learned to hide their autism, creating the illusion that they are no longer autistic.

When autistic traits aren’t as visible, it can be harder to obtain an autism diagnosis.

Is “social masking” a new phrase for you?

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Learn more about autistic social masking here: https://atypicalscience.org/can-you-outgrow-autism/

2. Fear of not being taken seriously

A study showed both diagnosed and undiagnosed autistic adults felt worried that they would not be taken seriously due to stereotypes that autism is mainly a ‘childhood disorder’.

Being denied an autism assessment and being told they are wrong made the autistic adults doubt themselves.

It is still common for clinicians to diagnose autistic adults with other mental disorders rather than autism.

3. The process of getting diagnosed can be confusing

In Australia, the pathway for getting an autism diagnosis in adults is a do-it-yourself process. It mainly relies on the autistic adult to organise and push through the diagnostic process by themselves.

For example, to get an autism diagnosis, the adult will need to find a general practitioner (GP, i.e., family doctor) and get a referral to a psychiatrist who specialises in autism diagnosis in adults.

Sometimes, adults must go to many GPs before being taken seriously, and having the referral made.

And usually, the autistic adult, not the GP, has to find the specialist psychiatrist.

For women, this is more complicated. Women have had difficulty finding a psychiatrist experienced in how to assess for autism in a woman.

Once the referral is made, the adult must make the appointment, which can have a waiting time of up to a year or more.

Once the appointment is made, the autism assessment process may be complicated. There are many different assessment tools which cost different amounts, and this information is not easy to get.

These steps make some adults spend years navigating through the process and getting their diagnosis.

4. Financial cost

Getting an autism diagnosis in adults can be expensive. A study found that the cost of assessment for autism can easily reach AUD$1,000 (USD$700) or more.

The high financial cost can prevent many adults from seeking a diagnosis, especially when autistic adults often have unstable incomes because of challenges in finding and keeping jobs.

5. Time cost

When autistic adults have difficulties in their work and finance, it makes it even harder to take out hours of their crucial working day to do the appointments and assessments.

The overall time requirement to figure out the diagnosis process, find the right clinic and psychiatrist, and go to the appointments is huge.

If you need help understanding autism or connecting with autistic people, we recommend our affiliate AutismWorks.

AutismWorks is an autism-affirming online course developed by autistic adults, and will answer your autism questions: https://bit.ly/3LzuvaK.

Getting diagnosed with autism can be a complicated process. With the current COVID-19 pandemic, I can only imagine the number of hoops autistic adults need to jump through to get their diagnosis.

Learn more about how COVID-19 has impacted autistic people here: https://atypicalscience.org/covid-19-impact-autistic/

Traditionally, autism diagnosis requires face-to-face assessments. However, in the COVID-19 era, psychiatrists needed to change to telehealth appointments.

But the good news is that a remote form of assessment, such as video conferencing, showed promising results in the accuracy of diagnosing children with autism.

Since this format works for children, we hope that with appropriate adjustment, the remote assessment is working for adults too, but this hasn’t yet been tested.

One thing that remote testing will do is decrease the time cost to adults, as transport to and from the appointment is not needed.

This is especially helpful to those who cannot drive, live in rural or remote areas, or have other situations or conditions which may make face-to-face appointments hard.

It is great that COVID-19 is not a barrier for many adults seeking their autism diagnosis.

However, much needs to be done to make autism diagnosis in adults more accessible to those who need it.

So, here are a couple of things that might help overcome the diagnostic barriers outlined above:

1. Ongoing training is needed for clinicians, so they will be less dismissive and show more understanding when communicating with potentially autistic adult clients.
2. Information about how to get an adult autism assessment should be simplified and available for the public.
3. Adult autistic assessments available afterhours. The clinicians may need to be more flexible on their appointment hours so the autistic adults can get assessed outside their working hours.
4. Government-supported financial assistance available for those getting assessed.

It is still a long and bumpy road for those seeking an autism diagnosis as an adult.

However, I believe with the increasing social and academic awareness of autism in adulthood, policies and processes will start to change to make the diagnostic assessment more accessible.

And I hope this article can give some hope and helpful information in your journey if you or a loved one is seeking a diagnosis.

Authors

Lead author: Harry Pan (BPsySci)

Supporting author: Dr Skye Marshall (PhD, APD)

Meet our writers: https://atypicalscience.org/about/team/

Disclaimers

If this article contains words that are new to you, you can learn about them in our glossary: Glossary

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References

Brunson McClain, M., Roanhorse, T. T., Harris, B., Heyborne, M., Zemantic, P. K., & Azad, G. (2021). School-based autism evaluations in the COVID-19 era. School Psychology, 36(5), 377–387. https://doi.org/10.1037/spq0000447

Dahiya, A. V., DeLucia, E., McDonnell, C. G., & Scarpa, A. (2021). A systematic review of technological approaches for autism spectrum disorder assessment in children: Implications for the COVID-19 pandemic. Research in Developmental Disabilities, 109, 103852. https://doi.org/10.1016/j.ridd.2021.103852

de Broize, M., Evans, K., Whitehouse, A. J., Wray, J., Eapen, V., & Urbanowicz, A. (2022). Exploring the experience of seeking an autism diagnosis as an adult. Autism in Adulthood, 4(2), 130–140. https://doi.org/10.1089/aut.2021.0028

Huang, Y., Arnold, S. R. C., Foley, K. R., & Trollor, J. N. (2021). Choose your own adventure: Pathways to adulthood autism diagnosis in Australia. Journal of Autism and Developmental Disorders, 52(7), 2984–2996. https://doi.org/10.1007/s10803-021-05169-4