Hi My Name is Cameron and I’m Autistic

In November 2020, I started researching autism in reference to myself. I came across a video from this channel. I’m not sure why it popped or why I watched it but I was surprised when I heard Paul talking about some things that I had been complaining about for years. I was surprised to hear him talking about some of the same experiences that I had in my past. My only impression of Autism before my diagnosis was the most severe cases. I thought that I was far too smart for such a diagnosis. However, I was soon to learn that the situation was far more nuanced than I could ever imagine. I discovered a whole new world.

Late dx Autism

I started to do some reading about “late diagnosis” (those who aren’t diagnosed as children) autism and the challenges of being an adult with autism. The stats were sobering. 85% unemployment rate is often quoted. I think the reality is not as bad. Most of the people I met on r/autism or through other social media had some kind of job. Some professions are over represented (IT, Computer science) and there are those who were diagnosed as children and got employment support and had simple service jobs. The average life span is only 55. This is mostly due to suicides, autistic people just can’t take it and they leave us. Then there are the parents who can’t handle their autistic children and sometimes, very rarely, kill them. The situation seems dire by the numbers but the data is poor. However, those numbers stuck in my mind.

I kept reading and kept watching videos. I saw myself in these people. I decided to pursue a diagnosis only to be confronted to another problem: no one wants to do evaluations. If you have a diagnosis, you can get treated but getting diagnosed is very difficult. I spent months on the phone calling this office only to be told they were full up and to try this other place. I then got lucky and called someone who told me about a doctor who was opening up a new clinic and would have an open schedule. My other option was a place with a 14 month wait.

On March 10, 2021 I was diagnosed with Autism Spectrum Disorder (level 2). It took 2 months of surveys, testing, my Mom even did a survey. There was an interview. I submitted my own writing on my own life as well. I was starting my graduate program the next day and while I knew that it was quite likely, it still came as a shock. However, what was more shocking is that I also was diagnosed with ADHD, anxiety, depression, and sleep onset disorder. I came for one thing and left with five. It was like shopping at the Target of mental issues.

I wanted this; I worked hard to get it; and then I realized my life was over.

My life is over

Early on in the process, someone on Twitter told me that the first year is the worst. It was certainly that case for me. I immediately discarded all my dreams for my life. All my grand plans for my life were summarily binned. I now realized, based on what I had been reading that survival was the best that I could hope for. It was easy to slide into this idea as I dug into this new world. Graduate school was difficult and it started to seem pointless. Things felt even worse when I discovered the complete lack of support for Late Diagnosis Autism (more on that in a minute).

All of a sudden my worst nightmare was at my door step: mental health medication. I had barely tried a low-dose antidepressant several years before and had long given up on it. Now, we were talking about zoloft, strattera, and vyvanse. We were talking about dosages and trying different ones. When my sleep was still broken we tried a pill for that and then another one. It took a year to finally find a combination of medication that worked. I discovered issues that I thought were me just being lazy and worthless and discovered that with the right brain chemistry, things were easier. We added in supplements too. The pills just began to pile up higher and higher. Life seemed like one giant pill.

On top of that, when I got my diagnostic paperwork my doctor told me that I should hang onto this paperwork in case I ever need to apply for disability support payments from the government. I never thought, in my wildest dreams or lowest depression, that I would ever hear those words in reference to myself. I am hard-working and industrious. I’ve had all sorts of jobs. I’ve worked since I was 16 at anything paying (and a few things that weren’t) and I never thought that my brain was so flawed that I would be indigent. All of a sudden I was reading about Washington’s disability department and how to apply for services and support. I was in unfamiliar territory and unfortunately, it was about to get more difficult.

No support

When I first started on this journey, I anticipated that there would be groups, resources, and guides on how to navigate society successfully as an autistic person. I figured that if I could take advantage of those resources I could get my life back on track. I could solve my unemployability issue, solve my dating problems, and generally put things right. I was ready to get to work. But there was no work to be done. There were lots of resources for parents of autistic children but nearly nothing for adults. Most of the organizations, even local organizations, were geared towards families with children. Adults were just left behind.

I applied to Washington’s disability services program to see if they could be of any help. I filled out the paperwork, followed up, eventually had my day before the social worker only to be told that I was too high functioning and that they usually spent their limited resources on people with an IQ of 83 or less. I was clearly not in that group and so there wasn’t much that they could do for me. It was just another dead end.

I knew that my experience was not my own lack of trying. I had several well-meaning friends start doing their own poking around and they were shocked to find the same thing: if you’re an adult with autism, the system barely acknowledges that you exist.

It was not all bad. I did find a local Meetup group of autistic adults. I joined a Facebook group for autistic adults. I found a new community of people that seemed to understand me.

Finding community

I had never really fit in anywhere as a child. It started young in kindergarten. My classmates hated me and treated me poorly. This would continue through school, homeschooling groups, church groups, anywhere my peers were gathered I was not able to fit in with them. However, I found that this was a common autistic experience and thanks to my introduction into this world I found a new community of people where I seemed to fit in better.

It hasn’t all been roses. I had some bad experiences along the way too but I am surprised at how well I can get along with people who have similar neurology to myself. I have met new friends like Dr. Peter Coogan, with whom I am writing a new project. I have met other people along the way on Twitter and found community and commonality that I never thought I would enjoy under any circumstances. It has been a wonderful journey of new people, new experiences, and a sense of understanding that I’ve never found anywhere else. I never thought I would find a tribe but now I have found a sort of tribe. We have our issues, problems, and needs but it feels like home.

A new view

I’m more than a year out as I write this. I knew that I would need to write about my autism diagnosis at some point. I’ve gotten used to the medication. I’ve gotten used to understanding people more than they understand themselves. I’ve reached a new level of understanding about myself. My life makes sense for the first time in 30 years. I know why sometimes I can’t relate to other people or them to me. It has been a tough road filled with depression and issues along the way. It has been a learning experience. It has been hard at times. I have some hope for the future but it is muted by autism now.

I am working hard to find a way to turn this thing that I do into something that pays better than it does. I know that creating a future for myself is an important part of my survival. I cannot depend on society the dominant social systems to help me. I can’t depend on the fact that I can get a job. I can’t depend on much of anything because our society barely acknowledges that I exist. I wasn’t looking to add another minority group to my identity but here we are with another. Now, I’m a triple-minority. On the social hierarchy I’m somewhere near the bottom. That has probably been the toughest pill to swallow. I always though that if I tried hard enough or did another project or found the right situation that I would thrive. That isn’t possible in our current society.

I have learned to be more positive about Autism. I still wish I wasn’t autistic. I am so glad that I figured this out but it is a terrible curse. It makes life necessarily difficult. Add on the other diagnoses and I now get why I had to work so much harder than everyone else I knew. I don’t know what the future holds. But I am hopeful that I can create something positive. I’m ok with autism now. The meds help a lot. The people I’ve met along the way have helped too. It is a unique journey.