I recently read two autobiographical accounts from other women around 40 who struggled with feeling different their entire lives, finally learned it could be linked to autism, and then got official autism diagnoses from a psychologist soon after. Their experiences strongly mirrored mine in that they were riddled with doubts and imposter syndrome pre-diagnosis, but once they received that diagnosis, they had the confirmation that they needed to fully integrate autism into their identities. They were also similar to me in that even before the official “ruling,” they knew deep down that it was right for them.
I’ve also met others who without a doubt consider themselves to be autistic with no official diagnosis whatsoever. But often they have people around them telling them that they are autistic, maybe even someone knowledgeable like a therapist. They may also use online assessments, like these psychometric tests from Embrace Autism, that confirm their suspicions enough for them. In my autism awakening, I had no one who believed me that I was autistic, including my therapist. Thus I struggled to feel confident in my diagnosis without the confirmation of an expert.
I envy those who can feel that certainty without formal confirmation and can self-diagnose. I’m now not sure I needed an official diagnosis other than to convince myself, because in the years after it, I haven’t found it to be very critical for me. For kids, it’s important to receive official diagnoses in order to receive the proper supports at school and in medical care. These things may be less important for adults, but there are many factors to consider.

Misinformed Psychologists - First I have to mention that many women and non-binary adults who are likely autistic are denied an official diagnosis by psychologists who don’t understand how autism usually presents in those assigned female at birth. They may have many outdated ideas about autism because they don’t keep up with current understandings of what it looks like to be a highly masked autistic adult. So getting a formal assessment from one of those psychologists can cause even more doubts to surface and can get in the way of self-diagnosis.
Official Discrimination - While going through my divorce, I was terrified that my soon-to-be ex-husband would use my autism against me. I had read about autistic mothers who lost custody of their children because of their diagnosis (some were heartbreaking personal accounts in FB groups). I felt forced to concede instead of fight for some things because he threatened me with a closer look into my mental health that would go on record. In those moments I wished I hadn’t gotten the diagnosis merely 2 years prior.
Immigration Discrimination - Some countries, like Australia and New Zealand, won’t grant citizenship to those with an autism diagnosis. Maybe you don’t want to live in countries with those policies anyways, but even the U.S. and Canada are on the list of countries that discriminate against autistic immigrants.
Lack of Support - As I described in my previous post, “I Figured Out I’m Autistic, So Where Do I Go From Here? 7 Steps for Autistic Adults,” getting an official diagnosis didn’t get me access to any medical treatments or medications. Any supports that I accessed didn’t require any documentation and just required me to say I was autistic. It did give me the confidence to say that without doubts, but I think that can be possible without a psychologist’s pricey help.
Disclosure - For the most part, I’ve been able to decide when to disclose my autism without needing a psychologist’s autism stamp. I even got to choose whether to put my diagnosis in my medical record. (I probably would elect not to do that if I could do it again.) I would consider this a neutral area in the end.
Accommodations - In my experience, I haven’t had to show any official proof in order to receive accommodations for my autism, but I don’t work in a traditional job. Some workplaces may require it, but more and more recognize that accommodations should be available to anybody who wants them. Even official programs like the Hidden Disabilities Sunflower Lanyard program doesn’t require documentation. But if you are in college or grad school or have a workplace that requires an official diagnosis to receive the accommodations you need, this could be a big reason for you to seek one out. Not every place needs the law to demand that they give accommodations because of the Americans with Disabilities Act, but many do.
Insurance Coverage and Disability - Getting an official diagnosis can be a double-edged sword when it comes to insurance coverage. It can help you get coverage for treatments like occupational therapy, but it also means that you have a pre-existing condition once you have a diagnosis. (This isn’t an issue now, but could be if the ACA goes away.) Also, an official diagnosis is necessary for procuring disability benefits for autism. These are important factors to consider for your personal needs.
Your Feelings - In the end, you may be like me and feel a strong need for a formal diagnosis in order to feel that you are autistic. This is a perfectly valid reason to get an assessment!
In the end, I can’t answer this question for you, but I hope I’ve given you information to help your decision. You need to assess how important it is to you and whether your needs align with a self-diagnosis or a psychologist’s diagnosis. A self-diagnosis is valid, and may be preferable if you don’t have certain legal needs. But if you do need insurance coverage, certain accommodations, or to file for disability, it could be very worth it to receive an official autism diagnosis. Just know that either way is valid and it is your decision.
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