Why Do I Disclose My Disability?
Adam Bailey • September 11, 2021personal
Why I choose to make my diagnosis of autism public.
Understanding my children
Our first son was diagnosed with autism in 2009, when he was just 2 years old. We already knew he was not meeting the "milestones". We knew we needed to get him the help he truly needed, by professionals that were familiar in development and autism. At the evaluation, we almost felt as if he'd never be happy, never be a productive member of society. It felt as if we'd always be pushing for him to meet milestones in order to succeed in life.
As fairly new parents, we were faced with concepts that were new and scary to us. He had a number of physical issues as well, and it was hard to determine what was autism and what was not. To be honest, the medical field didn't seem to understand what autism even was, in order to explain it to us. It was a lot to learn in a short period of time.
My wife was pregnant with our second child at the time our oldest was diagnosed, but still had to care for him constantly as I had to keep money rolling in. I was a printer repair technician making far less money than was required of all my son's therapies. We relied on our parents to help with costs. Life just kept getting heavier and more complex.
While my wife stepped up to the plate, I increasingly experienced more anger and meltdowns. I was overwhelmed as a new parent, but even more so in the parenting scenario we were in. None of us were getting any sleep. In addition to the stress of daily tantrums (both me and my son), we often felt like it was something we did to cause our son so much pain and frustration.
I increasingly felt as if I was falling apart, at a time when there was no room for me to fall apart. I felt like I should bury many of these feelings in order to better support my family by being "strong", so I kept pushing my feelings aside. Eventually I reached a point where there was no more hiding, and my meltdowns and temper tantrums were a real problem for the rest of the family. Something was very wrong and spiraling more and more out of control.
Discovery and diagnosis
My wife heard some adults with Asperger's Syndrome on public radio. She told me "These people are just like you". She was right. The very strange vision of daily life that I maintained, was only understood by other very strange and close friends of mine I had found. I have never seen the world as I feel most others do. I have always been extremely frustrated by social interactions and upset by things no one else even seemed to notice. However, this way of being created a very active landscape to perfect my special interests, such as drumming, which I became extremely proficient at. When the world was impossible, I could always find solace in listening to and playing music.
We then found a therapist who helped me understand and cope with my sensitivities and "invisible" pains using a subject that was comfortable for me, music. I learned that the same thing that can cause me so much sensory pain, can also let me hear and experience music on a whole different level. I am able to use sound to counteract my sensory dysfunction around noise. I was diagnosed with General Anxiety Disorder and Asperger's syndrome in 2012.
This therapist also helped me avoid losing my job. With his help and the Americans with Disabilities Act, I was able to convince my employer that I could do much better work if im doing so within my sensory comfort zone and be allowed to take breaks to center myself. It helped me be a more productive and positive employee. I've found that the work I have done to understand myself, and the toolset I have built, often makes me more likely to be able to control my emotions than some neurotypical co-workers I have had.
I met new, wonderful people online who really understood what I was going through during this time. I could be myself and honest about my "weird" feelings with these people. I ended up collaborating with one of these people on art projects, became very good friends, and even was the best man at his wedding!
The therapist also suggested I pivot my career path to software engineering. Which changed my life for the better in many ways. It allowed my wife to stay with my son and also be able to afford his many therapies. It gave me freedom to come and go as I please if I was needed at home, as long as I still got the work done later. I picked up software very easily and actually find it to be quite comforting at times.
While the personal diagnosis did help me get a grasp on my particular neurology in a way I could better cope with life, more importantly it gave me a true-to-life window into some of what my son was experiencing. It allowed me to empathize and understand my son, and many others, in a way I never could before I saw it in myself.
Better yet, it allowed me to prove that someone who was nearly losing jobs and family, could eventually be a productive member of society when the environment was set just right. The loved ones in my life could be helped to understand, and not immediately come to the conclusion that I am a mean person or ill-willed. I was able to see my son in a shared light, and pay better attention to the world around us, and what might be causing discomfort.
I am proud of my children for working so hard in a sometimes frightening and uncomfortable world of people who often cannot understand them. My son works harder that anyone I know, to learn so many things that come very natural to so many others. Both of my children are wonderful humans. And I am proud of myself for how far I have come, and from such seemingly dreadful depths of depression and overload / burnout. I am especially proud of my beautiful wife, who has to often be the one to balance all of us and keep herself together, while advocating for my son in all ways possible. We have done really, really well considering the mountains we've climbed as a family.
If I am able to admit flaws in my mental wellness and be in control of it as much as possible, maybe others can too.
If I am able to admit I need help, then maybe others can too.
If I can be proud of myself for overcoming my misfortunes, then maybe my children can too.
I understand there are some things about Autism that the public (or even science) may not understand. I realize this may not put me in the best light for some employers. There is surely some general taboo around being Autistic. I also get that I could easily go "under the radar" with all this, and never say a word. But going under the radar is not an option for my son, and many other people. Disabled people need many allies in their fight for acceptance.
In my opinion, there is no good reason not to be honest with the world about my unique neurology differences, and it is my hope I can help others do the same, if it may give them some hope as well.