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Getting an Autism Diagnosis as an Adult Shouldn't Be This Hard

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For as long as I can remember I have felt out of place. Like I just don’t belong or fit in. I’ve spent my life wondering why I couldn’t just get it together and be like everyone else. It wasn’t until I had kids of my own that I finally realized what was going on.

All three of my kids were diagnosed with autism and two of them also with ADHD. The more I learned about my children, the more I saw how they were just like me. I watched them struggle and was reminded in the process of my own childhood struggles.

Once I figured it out I had to have answers. I dug into research and any online questionnaires I could fill out and everything pointed to the same answer. That I was also autistic and had ADHD just like my kids.

Suddenly everything made sense. All the years of struggles, my constant feeling of being different, it all clicked. But I didn’t stop there, I needed the official diagnosis to get closure for myself.

So I started calling around and what I learned in this next step was extremely disheartening. The first part was finding a provider that accepted my insurance which proved to be much more difficult than I anticipated. I learned that very few places accept insurance and the cost for these evaluations are around $3,000, at least if you pay out of pocket.

Once I found a place that took insurance, I called and was told I would be placed on a waitlist and that it is common for the waitlist for adults to be up to three years. I waited about a year, and then when I was able to schedule an appointment, they wouldn’t let me because it was during COVID when face masks were required, and I can not physically tolerate a face mask due to sensory sensitivities and PTSD.

Anytime I tried to wear one I would have panic attacks and pass out. I was hoping since this facility dealt with people every day with these types of diagnoses that they would work with me so I could get my evaluation done, but instead they refused to let me schedule the appointment and then sent me a letter that I was removed from their waitlist altogether.

Back to square one. For the next year, I was completely defeated and gave up on trying again. It was when my depression and anxiety began to spiral, and I needed to start therapy that the next part of my journey to getting a diagnosis started.

The process to start therapy was just as stressful as trying to get in for an autism evaluation. I called all over and no one had any openings. Once again I was told that there were waitlists to get in that were months long. It took me three months from the time I started looking for therapy to when I had my first appointment.

During the first session I mentioned my suspicions of being autistic and what had happened, and my therapist said that their company also did autism evaluations so she put in a referral. It took about six months for me to meet with the specialist for the evaluation. The first appointment was just to go over all the intake questions and then it was two months after that for the actual evaluation and another two weeks from there for my diagnosis.

I went into this feeling optimistic and having no doubts that they would tell me I was autistic. When I had the appointment to get my results, I was completely caught off guard when they told me I do have ADHD but not autism. I did not agree at all. This specialist said that the autistic traits I have are symptoms of my other diagnoses (depression, anxiety, panic disorder, PTSD, and ADHD.)

I disagree. I believe that my other diagnoses are symptoms of going 30 years as an undiagnosed autistic. I know myself. I know my struggles. I know I’m just like my kids who are all diagnosed autistic. I live it every day. This specialist only seemed to have knowledge of autism from out of a book. Everything he said to me was extremely stereotypical about autism.

He said I communicated too well. He said I scored too high on the IQ test. He said I could describe friendship and therefore I just couldn’t be autistic. He said he didn’t see any sensory struggles during the appointment, even though I complained about how the fluorescent lighting was giving me a headache during this 6-hour appointment and I told him about all the different sensory sensitivities I have and how it affects my life. Facepalm. I tried to fight it. I called the manager and complained and got nowhere. I felt completely invalidated.

This specialist didn’t take into account anything I told him about my experiences. How I hate loud noises and bright lights. How I struggle with sensory processing and auditory processing. How I have always struggled to regulate my emotions. How as a child I would run off whenever I felt overwhelmed or stressed or afraid (i.e. elopement).

How I’ve struggled making and keeping friends my entire life. How I struggle to have conversations with people, don’t know what to say, and am always uncomfortable. How I hate eye contact; it’s the most awkward and uncomfortable thing ever. I mean, seriously, when do you look away, how long do you look away for, how does this even work?! These are just a few examples of the things I’ve struggled with throughout my life, but honestly, I could go on and on and on listing the symptoms I live with.

I shared about my experience on my blog page and discovered that I’m not the only one this has happened to. I received messages from so many people sharing their stories of how they couldn’t get a diagnosis either. Because they are adult women who have learned how to mask and function in society, they are overlooked and denied a diagnosis that they need.

When I shared this with my therapist she also informed me that she has heard stories as well from women who have had this same experience. And man this is just wrong. The system needs to change. Girls and women have a much harder time getting a diagnosis than boys and men. I went through it with my daughter too. When I brought up concerns about her I was told it was a phase. No one took me seriously.

It took over three years for anyone to listen and to get her diagnosis of autism and ADHD. But when I said I was worried about my son? They instantly listened and got him referred for testing and started him in OT and speech to get him help while we waited for the appointment.

We’ve made some great progress regarding autism and ADHD over the last few years, don’t get me wrong. But we still have a long way to go. Girls and women are still having to fight for a diagnosis and help. Autism is not just for boys. It’s not just for kids. It’s not just the stereotypes of not understanding emotion or empathy or speaking in monotone.

It is a spectrum for a reason. Each autistic person is different and unique. We must make space for everyone.  And the specialists doing these evaluations and holding people’s lives in their hands, they need to do better. In the meantime, this is all a perfect example of why we should respect self-diagnosed autistics. We need to make autism evaluations more accessible and affordable. We need specialists who actually know autism and will give an accurate diagnosis.

I will keep speaking out. I will keep spreading awareness. I will keep fighting. And I won’t stop until something changes.

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Originally published: April 16, 2024
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