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Hot Topic: Can people diagnose themselves with Autism?

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Ok here's the longer answer:

I'm seeing some spicy social media interactions where Autism is being called "trendy" and self-diagnosis is being called everything from "fashionable" to "appropriation" to "dangerous." I don't think it's any of these. Self-diagnosis is the option many people have when they lack access to evaluation.

Are there people out there who have decided they are Autistic and they're wrong? Probably. A lot? Probably not. Does that cause harm? I don't think so. Self-diagnosis is not a barrier to diagnosis with other common mental health conditions that can be diagnosed by a family doctor like depression or anxiety or conditions that can be diagnosed by a therapist like bipolar disorder or a personality disorder.

When it comes to Autism, it wasn't even a diagnosis on the books until 1980. Before that, it was a symptom of schizophrenia. Until the late 1990s, it was reserved for children with the most noticeable and disruptive symptoms. To put some context to that, my grandmother was 64 when Infantile Autism was defined in the DSM. My mother was 23 and I was 2. We all meet criteria but they were never diagnosed.

Why do I support self-diagnosis?

Hey, I would like all people to be assessed for Autism by a trained professional who is familiar with Autism in adults, but we have a mental health system in crisis and that is not available. It is better to see a professional and get a full picture of what is happening. Autism is rarely the only condition as it cooccurs frequently with other conditions and trauma. Proper diagnosis is complicated. It would be better for all to have a professional diagnosis.

1. The Road to Diagnosis is a toll road with hazards depending on what lane you're in.

There are a number of barriers between a person seeking an Autism diagnosis and the actually appointment to get it.

  • Accessing any mental health service is difficult and has been for some time. Demand is high.

  • Race is a barrier.

  • Gender is a barrier.

  • Sexual orientation is a barrier.

  • Income is a barrier.

2. The process is its own barrier.

The process isn't the same for every person, every time making it hard to share all the different situations. Generally, it looks something like this: In order to get an assessment for Autism in the US, a person sees their primary care doctor and asks for a referral. This professional may be discouraging requiring the patient and ask for a referral in spite of their position that it isn't needed. The primary care doctor is not likely to know a psychologist or psychiatrist with experience in adult Autism. They may refer to a mental health clinic to meet with a therapist first leaving it to the therapist to make a referral. Conferring with their insurance company to see if the assessment will be covered. At every step, there are multiple potential blocks to going to the next step.

3. In the US, evaluations for Autism are performed by psychologists and psychiatrists

People like myself, a clinically trained and licensed social worker, can not administer the recognized tests for Autism assessment. This is part of the reason waitlists are so long and so few providers are available to diagnose. If certification programs for the specific assessments were open to other professionals, this could aid in the backlog.

4. The current assessments are designed for children

This is the kit for the Autism Diagnostic Observation Schedule. It has been adapted to assess adults. Does this look like the assessment tool for adults?

This is an article where an adult describes the process of getting assessed with the ADOS. Other tools used for diagnosis are parent interview tools--this is because part of the diagnostic criteria is that symptoms were present in early childhood. Before age 3. This means that adults have to involve parents or close family members in the process of diagnosis. They have to be told of the process and consent to be interviewed by a psychologist. These people have to be living, trusted, available, and able to recall specifics of an adult's child development decades earlier. These tools are the Autism Diagnostic Interview Revised and the Developmental Diagnostic Dimensional Interview. This can also present a significant barrier to the process.

5. I don't see any harm if people are incorrect in their assessment

If a person decides they are Autistic, they are going to begin to accommodate themselves and may attempt to ask for accommodations and support from family and friends and possibly schools or employers. The later may present some barriers without some supporting evidence. Schools and universities can provide testings. What harm is done in this?

What if a person believes they are Autistic but they are actually ADHD, Bipolar Disorder and Borderline Personality Disorder instead? What damage can they do to themselves? To Others? To the mental health system? Anyone experiencing mental health issues should be seeking treatment and support especially in times of crisis. What if they don't? If a person doesn't seek out support, medications and other treatment, that isn't relevant to believing they are Autistic. The supports and treatments for Autism would include the same: medications, therapy and emergency care as needed.

If there are people who are mistaken, they aren't causing any harm. If they are getting any treatment, their other conditions are likely to be noted and shared and treated as well. It's common for Autistics to have multiple conditions, and it's unlikely a self-dx person would deny treatment for other conditions based on a belief that they are actually Autistic.

For these reasons, I am a social worker who will always accept self-diagnosis for Autism.

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