As an Autistic Psychologist, Here Are My Thoughts on Autism and Self-Diagnosis

Self-diagnosis, sometimes referred to as self-identifying, is a hot topic in the autistic community. Due to professionals misunderstanding the variety of ways that autistic traits can present, lack of resources for getting an “official” evaluation, and concern about having the label in a medical record, many individuals either cannot or choose not to seek a diagnosis from a qualified provider.

Some raise concerns about self-diagnosis in the autistic community, but there is research suggesting that these concerns do not play out the way we assume. Additionally, between the potential for discrimination that comes with a “real” diagnosis and the barriers to getting assessed, self-identification is the only route available for many seeking support and community.

Before anyone asks, I was “officially” diagnosed as autistic in 2021. I also conduct autism evaluations as a specialization in my clinical practice, and I have written a book on how mental health providers can better support our autistic clients. Between my lived experience and professional experience, I have some big opinions on self-diagnosis, and I will share those opinions with you today.

With that disclaimer in mind, here are the reasons why I am in favor of self-diagnosis/self-identification.

Self-Diagnosis Is Generally Accepted in the Autistic Community

One survey cannot fully encompass every opinion of a community, but survey data can be a good starting point when you want to listen directly to community voices. In 2022, Chris Bonnello of Autistic Not Weird conducted a survey about autism and got responses from approximately 7500 autistic individuals. I was not aware of the survey until after it was completed, so I was unable to submit my responses. However, Chris collected valuable information about the autistic community.

One question asked in the survey was whether the respondent agreed with this statement: “A diagnosis should not necessarily be required for someone to identify as autistic.” Approximately 64% of autistic respondents agreed with this statement. In other words, many autistic people agree that self-identification is valid.

Barriers to an "Official" Evaluation Can Be Insurmountable

According to the Autistic Not Weird survey, half of the autistic respondents and half of the caregivers who responded to the survey stated that the pathway to receiving an “official” diagnosis was not accessible. There are many reasons for this, including:

• Cost. On average, autism evaluations in the United States cost between $1500 and $3000 for children, and adult evaluations tend to cost even more.
• Coverage. Many insurance plans will deny coverage for autism evaluations, deeming them “not medically necessary,” so individuals who want to use their insurance to offset the cost may not have that option. Furthermore, due to the many hassles of billing insurance, fewer and fewer evaluators can sustainably accept insurance.
• Availability. According to a 2023 report from Cognoa, a child development and behavioral health company, US families seeking an autism evaluation for their child wait an average of three years before getting a diagnosis. Wait times for adults can take months to years, and very few autism evaluators even offer assessments to adults.

Evaluators Can Be Wrong

I first began to suspect I might be autistic in 2020 when I was spending more time on social media and connected with members of the autistic community. They pointed out that I seemed to have more in common with the autistic people I was supporting through my clinical work than I previously assumed. I sought an evaluation because I had internalized many myths about autism and was unsure how much the criteria really resonated with my experience.

After waiting more than six months for an appointment and saving up money to pay for the evaluation, I completed a battery of tests whose results indicated a “high probability” that autistic traits were present. However, my evaluators stated that I was too good at communicating with them while I took the tests, so they told me I was not autistic. (They also said that autistic people are rarely married and rarely work full time, and therefore the fact that I had a husband and a career ruled me out—but they knew about my husband and my job before they charged me to take all those tests, so…)

The reasoning they provided for why I could not possibly be autistic even though I obtained elevated scores on the autism measures did not sit right, so once again I saved up the money and sought out a second opinion. That evaluator reviewed the testing data, ran me through even more tests, and concluded that I was, in fact autistic. Again, since autism is lifelong, that means I was autistic when qualified professionals determined that I was not autistic.

In other words, even if someone is able to overcome the barriers to getting tested, that does not mean they will receive an accurate diagnosis. Not everyone has the privilege of paying for not one, but two assessments. Why should someone be gatekept from the community because professionals misunderstand autism?

There Are Risks to Having a Diagnosis in Your Medical Record

A number of self-diagnosed autistic individuals are deliberately not seeking an “official” diagnosis due to concerns for safety and discrimination. Many autistic people report being disrespected and denied autonomy by being autistic. Potential risks of having autism in your medical record include, but are not limited to:

• Eight states keep registries listing autistic residents, so having a diagnosis in your medical record lands you on a government list.
• Some countries do not grant immigration visas to autistic people.
• Some autistic people are placed in financial and medical conservatorships, stripping their autonomy.
• Autistic people have reported medical discrimination, including being given Do Not Resuscitate orders without consent or being denied organ transplants due to an autism diagnosis.

Self-Diagnosis Has a High Rate of Accuracy for Autistic People

If an individual is seeking formal support or accommodations, official testing can help identify their specific needs and supports based on individualized strengths and deficits. It is also possible to self-identify incorrectly, as different diagnoses have overlapping symptoms that can look similar. (Then again, as discussed earlier, it is also possible for fully-trained evaluators to incorrectly officially diagnose someone!)

With that said, more and more research is emerging to suggest that, in the autistic community, there is a high rate of accuracy when it comes to self-diagnosis. In particular, the Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS–R), a self-report measure assessing for autistic traits, tends to yield elevated scores for self-identified autistics. A recent study shows that the RAADS–R has an incredibly high rate of predicting if someone will meet criteria for autism based on more in-depth assessment.

Besides, since “official” supports require an “official” diagnosis, someone who is self-diagnosed cannot take resources from other autistics anyway.