The difficulty in obtaining a very late diagnoses

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ASPartOfMe
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Joined: 25 Aug 2013
Age: 65
Gender: Male
Posts: 29,060
Location: Long Island, New York

01 Aug 2022, 9:50 am

I was diagnosed with autism at 34. We need more research for adult

Quote:
I’m 36, and it wasn’t until two years ago that I was diagnosed with autism. I was lucky to even find out.

The years before involved multiple therapists that didn’t work, medication that gave me bad side effects, and misdiagnoses. Navigating insurance was a constant struggle.

The first psychiatrist I saw prescribed amphetamine medication for ADHD. That medication resulted in three heart attacks at age 22. Another psychiatrist prescribed two dozen different medications. Only one worked for ADHD, but my insurance didn’t cover it so I couldn’t afford it. I can only take it now because there is a generic form available.

It was hard for me to connect with therapists because I didn’t know how therapy worked, what kinds of treatment are available and that it’s based on developing comfortable, trusting relationships.

I later sought help from the mental health organization Valley Cities. I went through several therapists there with no success. One left for another job, one finished her internship for college, and a couple just weren’t a good fit for my needs.

It was also around this time that I started to believe I may be on the autism spectrum. No other diagnosis was fitting completely; depression, anxiety and ADHD only partially explained the behaviors and symptoms I had in social situations. Information I found online showed me that I did have some traits and could be on the spectrum.

I asked my Valley Cities therapist at the time what I had to do to be tested. She said the only testing available was designed for children and teens, and I would have to go to Children’s hospital in Seattle or search online for a test. This is like asking a person with a broken leg to go buy new bandages and medical supplies on their own, without help.

I gave up in frustration and despair. Medication somewhat worked, but the side effects were awful. And although therapy groups were helpful, I needed an individual therapist I could trust. I had been spinning my wheels and not feeling or seeing improvement in my life. My faith in the system was shattered.

Meanwhile, I needed to work full time to pay bills, so I took a job as a cook, which meant I had to give up my Washington state Medicaid coverage. Suddenly, everything that had been covered through Apple Health, including therapy, medication, doctor visits and sleep studies, was in peril. The cheapest, lowest-coverage insurance was all I could afford on minimum-wage work.

The early days of the pandemic, and the months leading up to it, were excruciating with few moments of joy.

I was close to attempting suicide. I was toxic in a breakup with a friend who didn’t deserve it, which was the last straw.

I asked my mother to bring me to the hospital. The therapist at Swedish referred me to Sound Mental Health. I’m grateful that I chose to try therapy one more time, despite years of mixed results, because finally, luck went my way. I was assigned a therapist after a consultation who could treat me. As we continued working together, I began trusting her and we clicked.

On my third appointment, I asked about getting screened for autism. My therapist at Sound found a test for children and teens and asked me a series of questions, although some weren’t relevant for my age. I found out I am autistic the week of my 34th birthday in April, which also happens to be Autism Awareness Month.

Finding out was a relief because I now have something to work off of, and I know why I behave a certain way or struggle in social situations.

With a guide and stable professional support, I spent the pandemic working on myself full time.

It’s hard enough to find a therapist who accepts your insurance, accepts new clients, and has availability during the day that fits around work schedules. How am I supposed to grow as a person on the spectrum when autism in adults doesn’t have a formal guide of how it presents, and how to fit in?

There needs to be more research on autism in adults. It’s odd that I had to find out myself by looking online


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


Minuteman
Snowy Owl
Snowy Owl

Joined: 23 Jan 2020
Age: 56
Gender: Male
Posts: 170

09 Aug 2022, 9:49 pm

There's little to no support for people over 30. I think the psychiatric community believes that we can't be helped so they focus all their attention on kids.