Getting an autism or ADHD diagnosis

You recently got a copy of your child’s evaluation, and it turns out they’re ADHD or autistic, and the report sounds like it is talking about you. Or maybe you’ve seen all the memes about things neurodivergent (ND) folks do, and realize you relate a lot to all of them. Or, you’ve noticed that the majority of people you get along with well are ND. There’s many places your journey could have started, but it’s led to this point- you’re questioning whether or not you are ND and are thinking about seeking an “official” diagnosis.

Getting diagnosed as an adult can be incredibly difficult. There are many resources for children (although, many of those are problematic), but very few providers who work with adults. Most screening and evaluation tools were developed for use in children and aren’t fully transferable to grown-ups. And even when those tools can be used in adults, they were often developed to use on a strict population and miss many autistic adults, especially AFAB (assigned female at birth) and BIPOC folks. Add to that that many autistic or ADHD adults have been masking their whole lives, so their “symptoms” aren’t as obvious, and you can see why so many people forgo professional diagnosis.

Why not to seek a diagnosis from a professional

There’s many reasons people choose not to get a professional diagnosis. It can be incredibly difficult to find someone who diagnoses autism or ADHD in adults, and even harder to find a provider who is ND-affirming. Then throw in the lack of information out there about AFAB people and the fact that many adults have been masking their entire lives, and it can be near impossible! The provider also needs to be licensed in the state that you are in at the time of the assessment, and some require you to be there in person, which can mean incredibly long travel times. And this doesn’t even touch on how long waiting lists can be.

Time constraints come into play here too. Generally an assessment can take multiple hours, over the course of multiple days. This can be burdensome to those who do not have flexibility with work or home duties, and it is difficult to get the flexibility in scheduling that may be needed to match your energy levels the day of testing.

Cost is a huge factor as well. Many insurance companies do not cover the cost of autism or ADHD assessments, especially in adults, leaving you responsible for the full cost. Even if you do have coverage for this service, many evaluators do not accept insurance due to privacy and regulatory concerns, among others. Cost will vary by area, but I generally see a cost of $1000 up to $3000 (or more!) for the assessment, depending on exactly what testing is utilized.

There are also very significant discriminatory factors that come into play with diagnosis as well. It is important to consider all of these factors when making the decision to pursue a diagnosis by a professional. Much (if not all) of the diagnostic testing was created and normed on white, middle-class, cisgender boys. If you fall outside of those categories, there’s a good chance you may not get accurate results. While technically with an “official” diagnosis you would be protected from discrimination under the ADA, in reality, it takes a ton of money in attorney fees to prove discrimination in court. Finally, some countries deny immigration status to autistic people.

For a deeper discussion on these factors, please check out this article by Devon Price (author of “Unmasking Autism”).

Why would I seek a diagnosis then?

Well, for some people, it can be incredibly validating to get the “proof” from a professional that they are autistic. And while there are many incredibly harmful “therapies” (such as ABA) out there for children that absolutely need to be avoided, having a diagnosis on record can open up additional, affirming therapies, such as speech and occupational therapy. This can sometimes be beneficial even in the school setting for adults in college, as having the diagnosis on paper can open you up to additional accommodations to meet language or sensory needs. If you are looking to apply for SSI or Disability, you need to have a professional diagnosis to do so.

So, if I don’t want to go the “official” route, how do I know if I’m autistic?

Well, here’s the thing. Self-diagnosis is overwhelmingly seen as valid in the autistic adult community. I’ll go into this in more detail in a future post, but for now, if you highly suspect you are autistic (or ADHD), and have done your deep-dive (as we ND folks tend to do), you probably have your answer. This can also be a place where therapy can help. Not to “fix” anything- we don’t need fixing, and there’s nothing to fix anyway! But to help you come to a greater understanding of your own internal experience and view yourself and your life experience from this new lens. Plus, as I read somewhere once (if you know where, let me know so I can give appropriate credit), neurotypical people generally don’t walk around wondering if they’re autistic. So, if you’re wondering, you probably are, and I’d like to welcome you to our wonderful club.

And if you are interested in going the “official” route, you can find more about my evaluations here.