Twainbow

People Living Under a Double-Rainbow

“I am Autism”: Diagnosis at 30 – A Broken System

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By: Corey Coloma

In my late twenties, I became more self-aware. I started realizing just how different I was from my peers. I met someone that intrigued me at a local guy’s night with other gay men. Then, one day he shared with me that he was diagnosed with Asperger’s. I had never heard of Asperger’s. I simply nodded and had no idea what to say. Later that night, I Googled it and found its ties with Autism. I couldn’t see the characteristics of Autism I was taught about in my youth in him.

Over time I could see how similar we were. I would watch him and I would focus on my own characteristics. Then, one night another friend asked him how the diagnosis process works and a light went off in my head.

I went home and started Googling tests for Asperger’s and came across one called Aspie Quiz. It was quite lengthy. When I finished, I scored 175 out of 200 on the neurodiverse side and only 34 on the neurotypical side of the scale. I thought I might fit the criteria for Asperger’s syndrome.

Corey Coloma, Twainbow Director

I went to my primary care physician and told her I’d like to go through the diagnosis process. Two months later I went for a visit with a psychiatric nurse practitioner at the same office. After a series of questions, the man told me that I had the signs of Asperger’s. I was then told I would have another appointment 2 months later to talk about it. I couldn’t believe I had to wait two more months.

I became hysterical in the office as no one was helping me. They took me to a therapist there. I started seeing her regularly. I started reading books about Autism. The first book I read was Thinking in Pictures by Temple Grandin. My whole life suddenly made sense to me. Someone knew what it was like living life as I did.

A few months later I learned that I could go to Voc. Rehab to get a new job. When I went there I had to see a psychologist to go through an extensive diagnosis process again because I was informed the previous person was not qualified to diagnose me. People started treating me like I was disabled and not an equal person. People treated me like I was unintelligent despite having an IQ at the top of the charts. The psychologist also found me to be on the Autism spectrum and that I would qualify for services. I was told I needed case management services at the county office. 

“Someone I had only met a handful of times helped determine my fate.”

I went to another psychologist at the county office to become eligible for services and get a personal support worker. My mother had to come in and explain that I had always been the person I was from birth and that I didn’t suddenly become Autistic. They couldn’t believe I was never taken in before for testing. My mother simply told them that, “Corey has always been Corey.” Nothing was wrong with me and there was no reason to take me in because I wasn’t broken and I didn’t need to be fixed. I was her child and she loved me for who I was. They told me I needed to be on Social Security instead of having a job.

I was found eligible for services. I was mistreated through the process. People told me I was “just so normal.” They couldn’t understand how someone like me went 30 years without a diagnosis. Some people suggested that I must be schizophrenic or that I had memorized the DSM to get a diagnosis during all of the months through the different steps. They were surprised that I could drive, that I had a job in sales. That I had a Facebook.

I felt like the one thing in my life that made sense was being ripped from my soul. My diagnosis of Asperger’s was the only thing that ever truly made sense to me and I felt like they were trying to steal it from me. Eventually, I lost the will to live. I was hospitalized and stayed at a facility for quite some time. I went on medical leave from work.

When I got out of the facility I tried to go back to work but I couldn’t deal with anything. I began searching for another way to prove that I was Autistic. I found the Amen Clinic in California. I booked the first appointment and spent almost my entire savings to have brain scans completed and they confirmed that I had mild Autism. I brought the results back to show everyone. I quit my job and started fighting for my future. I went back to Voc. Rehab where they gave me a job coach who suggested that I should be a janitor and ignored what I wanted to become. I fired him and worked with the counselor. I got a new job with my own hard work. I started making changes to better my life.

I rewrote my Person-Centered Information and made changes to my Individual Support Plan for the county. The county office decided I was doing so well that they sent me to another psychologist to be reevaluated. They sent my case manager to the appointment with me. Someone I had only met a handful of times helped determine my fate.

I was found to be ineligible for services, months after first becoming eligible. They found that despite having a confirmed diagnosis of Asperger’s I scored too high on their test to need services. I didn’t realize it then, but I had won. I was free from them. I had my independence and no one could take away my diagnosis. Every time I look to my past I see the progress I’ve made in creating a better future for myself. With my new job, I now provide the same services I was once told I needed.