What’s it like when an adult is diagnosed on the autism spectrum?
If you’re like me, it was likely a difficult journey reaching this point, one filled with confusion, hurt and a pervasive sense of loneliness. Parents may be gone. Family or friends may have pushed for a diagnosis or have done their best to prevent it. Even when it’s anticipated, being told you’re autistic is a moment of truth unlike few others in life.
No one pushed me toward a diagnosis. I did it on my own. After so many years, I had finally noticed a connection between my behavior, the reaction of others and my being so different. This had always been my circle of hurt and flight: not fitting in, not understanding why and running away.
This time, I saw the pattern. You can Google why an otherwise taciturn person will launch into a pet subject and try to talk the legs off a table. You can take an online autism test every day for a month and never get anywhere near failing, no matter how hard you try. You can finally say, “Yes, this is me … and stop right there.” I could not, even when my wife asked me to.
I was lucky to find a center that specializes in autism research. It took months to arrange an assessment and still more weeks to finally hear the results. My doctor was compassionate and patient. I only wish I could go back now and tell him all the things I didn’t realize were important to the diagnosis, so we both could more easily recognize my autism.
I left the appointment with a folder containing the details of my assessment, a formal written diagnosis confirming that I had a disability, plus a contact sheet listing online resource sites, local mental health professionals and community support groups.
I fell so hard and fast. There was nothing in the folder explaining how miserable and hurt my wife would be when I told her about the diagnosis. There were no warnings that telling others wouldn’t make them believe my news, that I wouldn’t wake up the next day with a permanent hall pass for being different or that my depression and anxiety wouldn’t finally melt away.
There are no adult support groups where I live, no sympathetic friends or 100-day plans for the newly diagnosed who isn’t a child. Maybe it’s not like this for everyone. I was on my own and could no longer tell where the descriptions in the Diagnostic and Statistical Manual of Mental Disorders (DSM) ended and I began. If I still existed at all.
I can only assume that providing a list of mental health professionals is standard operating procedure following a diagnosis. Adults wrestling with their diagnosis may need professional help putting the pieces back together. I have no doubt it’s a necessary and helpful step for many. It wasn’t for me.
I called one of the psychiatrists on the list, in part because I was anxious and depressed. What I really wanted, however, was someone to explain “me” in words I could understand and help me begin rebuilding my life.
Instead, the psychiatrist couldn’t understand why he had been recommended, talked endlessly and interrupted anything I said, only pausing periodically to have me read a page from the DSM and asking if I thought that was me. I left his office with prescriptions for an antidepressant and an anti-anxiety drug. Perhaps he worked better with children and parents.
It took me three months to get on and finally off the drugs, during which I read everything I could find about autism. Apart from Tony Attwood’s books, the best were those by adults on the spectrum sharing their experience of life. With their help, I found my way to online blogs and websites by and about adults and organizations advocating the right to be heard and supported when needed. I connected with people like me. It was the road back.
This could have been an easier journey, certainly a less painful one. However, that might have required a diagnostic community focused less exclusively on children and the funding it generates, doctors more thoughtful about the challenges facing the newly diagnosed adults walking out their door and family and friends less frightened by the stigma of autism.
While we wait for this dynamic to change, there are things we can do to make it easier and less painful for others like us to move toward understanding, accepting and liking themselves. We can be seen and heard as we are, not as others expect us to be. We can work to help people not like us understand the breadth of expression that comes with autism and that we aren’t “broken” or all the same. And we can reach out so that people like us feel less alone and more connected, regardless of whether or not they are formally diagnosed.
No one should feel alone on this journey.
Follow this journey on Lost Words.
Lead photo source: Thinkstock Images