The following story, written by Isaac Dealey, describes his experience living with a high functioning form of autism called Asperger Syndrome (AS). AS is a developmental disorder that affects a child's ability to socialize and communicate effectively with others. Children with this syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics.
Doctors group Asperger syndrome with other conditions that are called autistic spectrum disorders or pervasive developmental disorders. These disorders all involve problems with social skills and communication. Asperger syndrome is generally thought to be at the milder end of this spectrum. (Source: http://www.mayoclinic.com/health/aspergers-syndrome/DS00551)
Here is Isaac’s story, told in his own words.
“After about the fourth time I called him, he turned toward me and said ‘what?’ and I knew from his expression that he only heard it the last time.” My sister laughs when she describes these interactions from our childhood. She says raising my nephew brings a flood of memories of what it was like growing up with me and our father. All three of us have the kind of melon heads that make hat shopping a challenge. There’s a good chance all three of us have Asperger Syndrome, although I’m the only one with a diagnosis. Like many adults on the autism spectrum, receiving the diagnosis was a tremendous relief. It was as though I’d spent my whole life wandering through the dense forests of the Congo, searching for my family with no map or guide and then suddenly a compass landed in my lap.
Most babies are into everything by the time they can crawl, anxious to pull, smash and swallow anything that’s not nailed down. I wasn’t like other babies. My mother wanted to know why I was so quiet and why I liked to sit in one place and pour over just one baby book for an hour… two hours… four hours… When I did crawl, I showed that you should never underestimate your face as a means of locomotion. I propelled myself forward with my legs, gleefully dragging my face across the carpet. One doctor after another told her I was fine. What about my hearing? Surely there must be some reason I didn’t hear people calling me from only a few feet away? A standard hearing test showed no deficiency. Isaac… Isaac… Isaac… What? This is a familiar routine for my fiancée, Tiffany.
Peculiar babies tend to become peculiar children, and other children let you know quickly and painfully that they don’t like different and they don’t like you. Girls like dolls, boys like sports and I liked… writing software. My father didn’t have any friends either. He engineered software for Texas Instruments and in third grade they donated computers to our school. It was one more reason for other kids to haze me. I wasn’t supposed to be making video games in my spare time, I was supposed to be playing baseball with the guys. My oldest daughter Alex is a near carbon copy of me at her age and tells me that she can only make friends with other misfits like herself.
Peculiar children tend to become peculiar adults. I wish I could say that working in the corporate world is different than high-school. I wish I could say that people in the office are more sophisticated, that they’ve learned to understand and tolerate people’s differences, and that the cliques and the hazing and the head-games have disappeared. I wish I could say these things, but I can’t. My experience of the working world is that it’s not the people, but the cliques, hazing and head-games that become more sophisticated. I didn’t understand them in school and in the working world I became even more lost. Like most adults diagnosed with Asperger Syndrome I have a long history of not fitting in at one company after another and ultimately being unable to keep jobs. People in Michigan are losing their minds right now about an unemployment rate of just 14%. It’s hard to imagine what it would be like for me to be worried about an unemployment rate that low. For those of us on the autistic spectrum it’s over 80%. Even after high-school, we’re still on the outside looking in. But this story isn’t about despair, this story is about hope.
Many teens with Asperger Syndrome (like my daughters) are intensely interested in a cure for autism. They’re dying to be normal and I have to admit I was too. Today at 34 I’ve learned that most of us in our 40s have found our niche and don’t want a cure. We enjoy being who and what we are. Autism is not the end of the world.
But a few years ago, I wasn’t so sure. I mentioned earlier that my story is about hope. However, there was a time that I felt so impotent to change anything that I became suicidal. I was caught on the losing end of a battle trying to maintain child support payments based on a salary from a job I no longer held. I struggled to pay as much as I could to avoid going to jail. But the reality was that for most of that time, I could only hold a job for a few months at a time before being fired again. I didn’t eat out. I didn’t see movies. I barely had a place to live. And I hadn’t seen my children for a very long time.
What a difference some time can make. Today I'm finally back living near my kids, getting to see them every week. That hasn't been true in 9 years. I have my driver's license back (it was suspended for 7 years because of the child support). I have what's probably the best, most dependable car I've ever owned and it's insured. I have a decent apartment and I have the AutLabs project, which I share more about in a bit. And I'm reading some of the most challenging books I've read in my life, such as Crucial Conversations, which is a book about dialogue and conflict resolution, things that have traditionally been problematic for me. And my social skills are improving. I honestly never would have guessed that things would turn out this way if you'd asked me about the future a few years ago.
And that brings me back to the Autlabs project. For me one question still remains; what to do about that unemployment rate. It’s an equality issue to be sure. I’ve talked to a lot of people about how to find and keep good jobs and I’ve always heard the same advice from people on the spectrum and off. They say never disclose your autism to an employer under any circumstances. Why? Autism has only affected our social skills, which usually have little to do with our work. We avoid social jobs like customer service or heck even sales. We focus on jobs we’re good at. I’m a software engineer by trade. But I chose to be public about my diagnosis early on, so the invisibility ship has sailed for me. I chose to be public about it to help dispel the myths about autistic people, like the myth that we’re mentally retarded and therefore only fit for mail rooms or janitorial work. When I received my diagnosis in 2008, embedded in the neurologist’s report was an IQ score in the 93rd percentile. Does sorting mail require a high IQ? Is it making good use of a person’s potential? Even if I could hide the condition from my employer, what would that serve? Why should I have the luxury of invisibility, when the same luxury is unavailable to a person in a wheelchair, or with dwarfism or a prosthetic arm? And honestly, of all the people in your life, your employer is the last person who should be in the dark about your skills – not only your strengths, but your weaknesses as well. Staying silent about my condition would only serve to maintain all those bad stereotypes about us.
I think most people would say we need training programs: mostly that we need training for autistic people to help us stay invisible (and maintain those bad stereotypes). You might find the occasional person who would advocate for programs to educate employers about the myths of autism, to show them that we are competent and that we only need a little patience when it comes to relationships in the office. We could do that and it might be minimally effective. As is common among people with autism however, I see an alternative approach; one that I think will yield better results. Step one is to get broad community involvement in the creation of a solid and repeatable business model that involves hiring autistic workers to fulfill the core business. Step two is to disseminate this new business model so that many aut-shops are created in different regions and industries. Step three is to change public opinion of autistic workers. With patience and diligence, people will see that our companies are not so different and that they too can easily work with autistic employees.
I’ve started implementing this plan on our website at www.AutLabs.com, and the results have been simply amazing. Community response has been overwhelming. People are signing up continually for our newsletter, writing articles about it and getting their friends and family members involved. Little more than a month after launch of the site, I’m now answering email enquiries about the project just about daily. I find myself continually amazed at the community’s readiness to be a part of this exciting change.
Yes, my story is about hope. Hope for change, hope for open minds and hope for open and willing hearts to do business in a different way...one employee at a time.
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Written by Isaac Dealey