Lessons From a Life on the Spectrum

As the first large wave of autistic children—a significant percentage of whom have an Asperger’s diagnosis—approaches young adulthood, they face new challenges making their way in the world socially, emotionally, and professionally. One valuable resource is adults on the spectrum sharing their own experiences and offering guidance. Among them is Lynne Soraya, whose book, Living Independently on the Autism Spectrum, picks up many of the themes she discusses in Asperger’s Diary, her blog for Psychology Today. Topics include managing emotional and sensory issues, safety, interviewing for jobs, and connecting with friends and romantic partners. And for parents, it’s an instructive window into the world autistic children and teens inhabit. We talked with Soraya, who works in technology for a Fortune 500 firm, about her efforts to help young adults with autism reach their potential.

When were you diagnosed with Asperger’s?

That really depends on how you define diagnosed. If you mean confirmation by a professional, that happened a few years ago. If you mean “When did I know I was on the spectrum?” that gets a little more complicated.

I grew up with the knowledge that I was somehow different, but did not know why or what it was. The first clue came when I saw the movie Rain Man. I clearly remember thinking, “That guy’s like me!” But I didn’t understand at the time that the depiction in the movie was not simply of a man with autism. It was a depiction of a man with autism and savant syndrome and these two conditions are not the same.

Around 2000 I came upon an article in a stack of magazines about autism in Silicon Valley, penned by Steve Silberman. I was thunderstruck. That’s when I realized that I’d been right all those years before. Savant syndrome didn’t fit, but autism did.

What led you to be evaluated?

It took me a very long time to work up the courage to approach a professional about autism. I grew up at a time when Asperger’s was not an available diagnosis and autism (or childhood schizophrenia, as it was still called when I was born) was pretty much assumed by many to come with intellectual disability and/or speech delay. It was accepted early on that I did not have an intellectual disability, and I was actually precocious with language, although if you looked closely you’d see some clear differences in how it developed.

I grew up hearing stories about how my very earliest speech had to be “translated” by my parents, as I developed my own specific words for things that meant nothing to anyone else. I might, for example, refer to popcorn as “car coat.” Rather than viewing these types of things as indications that something was “wrong” with me, my father just went with it. He learned “my language” and I reciprocated by learning his (or rather the language of everyone else).

What happened when you went to school?

When I ventured beyond the protective bubble of my family and adults who “got it,” I received a very rude awakening. The theories of Bruno Bettelheim and others who believed that troubling behavior was caused by poor parenting still held some sway, and this colored my experiences in a very traumatic way. When my first-grade teacher interpreted my odd behavior as evidence of abuse, I was repeatedly grilled by a court-appointed psychiatrist assigned to determine what my parents had done to me to make me the way I was, and subjected to repeated expressions of disbelief when my responses didn’t support their biases.

From a young age, I lived with the fear that I would be taken from my family, and the deep-seated knowledge that if I could somehow have been more “normal” my family wouldn’t be under scrutiny. I bear some deep scars from those days. Because of those scars, I did not seek professional confirmation for a lot of years but chose to research and learn everything I could on my own.

Were there adults other than your parents who helped you as a child?

I was incredibly lucky in that I had a few early teachers and other caregivers who, rather than seeing me as “impaired” or “naughty,” assumed that there was a reason for my behavior, if they only looked for it. I’ll never forget, for example, the day I had a meltdown in art class when I was about 12, and another student dropped a sculpture I had lovingly made. My art teacher, who was one of my favorites, reacted with a great deal of grace and patience. She seemed to know, without my telling her, that I was mortified about losing control, and instead of reproaching me, helped soothe me and help me to calm down. By third grade, I’d become very good at suppressing the meltdowns and they almost never happened in public. I’d keep an iron control on them until I got home, then something would set me off there and I’d come unglued.

What led you to write the book?

When I began to read up on autism, the experiences of others, about things like unemployment, I realized that for all the struggles I’ve gone through, I’ve been extremely lucky. Sharing what I’ve learned with others is my way of “paying it forward”—investing in the lives of others in the way others invested in mine.

I think adults on the spectrum have a huge role to fill in the community. There are some things that we know better than anyone else, because we’ve lived it directly. I think that if we can collectively share our experiences, and reach out to the younger generation, we can make a huge difference in how well that generation will adapt and thrive. That is why I reached out to so many other adults on the spectrum for their input and contributions in the book, including Rachel Cohen-Rottenberg, Brian R. King, and Michael Forbes Wilcox. They say it takes a village to raise a child—I don’t think that stops when a person reaches young adulthood. We can be their mentors. We can be their village.

Who did you have in mind when you wrote the book?

Young adults on the spectrum just going out on their own. While much of it will be applicable post-high school/college, I think it would have helped me to read a book like this even earlier to help me to learn and prepare for going out on my own. Subjects like career planning and work come into play around that time, as do friendships and relationships. As a person who was hit by a car twice by the age of 19, I believe that safety is a topic that can’t be introduced too early, and the management of emotion and sensory input is a crucial part of that.

What was most difficult about growing up undiagnosed?

The biggest challenge was not understanding myself, or why my neurology reacted the way it did to things. If I had understood better about sensory issues, I could have prevented some of the massive overloads that I experienced. When you don’t know that you’re wired differently, you wonder why everyone else can stay in control when you break down, why the squeak of the shoes on the gym floor during a basketball game drives you into such overload you’re forced to flee. You wonder why you’re rejected so much. You think it’s that something is unworthy or unlovable about you, rather than the fact that you relate to the world differently.

What do you wish your parents had known?

I do wish that they had some formal awareness of autism and how it affected me. I think it would have helped them in advocating on my behalf, and in asserting themselves with professionals. I also know that knowledge of meltdowns and sensory issues would have helped a great deal. I write in the book how I went through a period of time in high school where I was unable to listen to music, because the stress of what was going on put my neurological system on such high alert I couldn’t even stand to listen to music that I normally found pleasant and comforting. During that time, I withdrew a great deal. My mother responded to this by trying to get me to interact more, thinking I was depressed or something else. When this would eventually lead to a meltdown, she’d be confused and hurt, and I didn’t know I needed to explain it to her. I think understanding sensory issues, meltdowns, and how one could cause the other would have eased our relationship a lot during this time.

What do you say to a child who is upset about being autistic and therefore different?

One of the biggest things it to help kids understand that we’re all different, and that’s OK. What helped me the most in this area was meeting adults who modeled authenticity—who accepted themselves and lived with differences every day.

You’re married. Is your husband on the spectrum? Your children?
My husband and I have been together for about 18 years. He isn’t on the spectrum, which made it really interesting for us in the earlier years of our relationship. We spent many of those years learning how to “translate” from his world to my world and vice versa.

What we’ve found is that many of the challenges of living on the spectrum are cultural challenges. Our neurologies shape how we interact with the world and each other in ways most don’t think about. Those differences can lead to real barriers in communicating and understanding one another. But if you can actually talk about it and get down to the real issues, a lot of those things begin to make sense on both sides.

Learning these skills has been, for me, especially important because in our house I’ve been in the minority, from both a gender and neurological standpoint. I have three stepsons who are not autistic. They are all grown now.

What more could be done to help adults and those who are on their way to becoming adults?

I think mentorship, both from autistic adults and neurotypical adults, would help a great deal. The better we can help young adults to learn the skills they need, the better off they will be in the long run.

Living Independently on the Autism Spectrum is available on Amazon.