Adults are diagnosing themselves as autistic, let's not invalidate it
It may seem like autism spectrum diagnoses are on the rise. In many ways, the diagnosis of this neurological difference is on the rise due to diagnosis clinicians receiving more education around what autism looks like in different populations. When the Autism Spectrum Disorder (ASD) was first being studied, the diagnostic criteria was based on white males, much like ADHD.
This narrow demographic means that many people who didn't fit into that category were misdiagnosed or under diagnosed. With the advancement in education around racial and gender bias, other components have been taken into consideration when diagnosing. But the focus has still mostly been on male children, leaving some girls being undiagnosed well into adulthood.
With the rise of social media, people have been able to connect dots on their autism diagnosis by learning from other autistic people. This has been extremely validating for so many, especially women who have struggled much of their lives learning to mask behaviors they learned society deemed as unacceptable. But social media isn't the only tool people are using to get an idea of if they're autistic or not.
There are countless self-assessments available for free online, and generally someone who suspects they may be autistic takes several assessments to triple and quadruple check the results. The majority of people are not walking around hoping they're autistic. These are usually people that have noticed that they simply don't fit in or feel left on the outside, miss important social cues, and sometimes have a hard time feeling like people enjoy their company.
Many internalize these things, knowing that it may not be "normal" for an adult to spin in circles when they're excited, count the words people say when they're anxious, or feel like they're going to spontaneously combust if they have to make a phone call. So when they see someone who behaves like they do, they want to learn more and seek out answers. Those answers are not always sought through traditional means.
People that are neurotypical or even those who have never been without adequate financial means may not understand why someone wouldn't immediately seek professional help if they suspected a diagnosis. The truth of the matter is, if you're an adult, getting an official diagnosis can be extremely difficult. Autism can't be diagnosed by just any therapist with a license, the diagnosis has to come from a neuropsychologist, a psychologist and sometimes a pediatrician (when diagnosing a child), according to the American Psychological Association.
This means that waiting lists can become extremely long and the price can be out of reach for some people since insurance companies don't always cover testing for an adult. But waiting lists and finances are not the only reason people may forego a formal diagnosis. Some people are worried about the impact of a formal diagnosis, whether it be a job, military service or more limited immigration options. These are just some of the social and financial reasons that keep people from making their diagnosis official.
Two autistic friends sitting outside using stim toys and laughing at their phonesPhoto by Hiki App on UnsplashDoes that mean their self-assessment and subsequent self-diagnosis is invalid? No. As a licensed clinician I truly believe that people are experts on themselves. This doesn't mean I personally like self-diagnoses, I don't. There are a lot of nuances that need to be taken into account and diagnosing is more involved than a few online assessments. A differential diagnosis can have a high correlation with positive autism assessment results. Post Traumatic Stress Disorder or Complex Post Traumatic Stress Disorder can mimic symptoms of autism, so can ADHD, and certain types of anxiety.
For this reason, I encourage people who think they have autism to seek therapy if it is within their ability. While the average therapist may not be able to diagnose autism, there are therapists that specialize in working with autistic people. Meeting with a therapist for more than a few sessions will give them the ability to properly assess if they have no concerns with the self-assessment results. They may come to the conclusion that there are other things that need to be addressed before they can accurately look at the possibility of autism.
Whether you have the means or desire to meet with a therapist, it would be beneficial to know from loved ones if they noticed these behaviors when they were a child. If the behaviors have always been there then chances are the self-diagnosis is likely correct but if they started after a specific event in life, or comes with things outside of autism then there may be something else to consider.
Given all of these variables in self-assessment and self diagnosis, it would be incredibly difficult to declare someone else's personal experience and self-expertise as incorrect. Unless there is direct knowledge of untruths in the self-assessment or that person has been your client for a period of time, there would be no way to look at a person and know if their self-assessment of being autistic is incorrect.
So if someone discloses that they're autistic, simply believe them. There doesn't have to be any follow up questions about who diagnosed them or how, just believe them because they know themselves better than anyone else.
The author of this article, Jacalyn Wetzel, is a Licensed Clinical Social Worker and practicing therapist.
The Northern Lights in Sweden. via Visit Sweden, Photographer: Jann Lipka/imagebank.sweden.se
A woman camping in the Swedish archipelago.via Visit Sweden, Photographer: Anders Klapp/imagebank.sweden.se
A Swedish Midsommar celebration. via Visit Sweden, Photographer: Stefan Berg/Folio/imagebank.sweden.se
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