• Understanding Autism from the Inside

    “Academics came easily to me. The rest of life—not so much.”

Depression and Asperger’s Syndrome

An except from Twirling Naked in the Streets and No-One Noticed…

Children and adults on the autism spectrum are prone to depression—I certainly am. Research has shown that nearly 65% of people with autism or Asperger’s Syndrome present with symptoms of depression. The depression usually develops in late adolescence and early adulthood.  This comes as no surprise to me. Those are the years that social interaction and life demands change rapidly and can often overwhelm us.

Due to the inability to express our emotions or communicate feelings of disturbance, anxiety or distress verbally, depression is often missed until it is so severe that it hinders our ability to function. I faxed my doctor a list of symptoms because I could not verbalize them when I was in his presence. I thought I had found a way to express my emotional state—through the written word, but he thought that made me a little crazy.

An autistic person with depression may not “appear” depressed to a physician that only see them once every couple of months due their impairment in non-verbal expression. My medical records are filled with this two word comment: Inappropriate affect.

Inappropriate affect is when a person is saying one thing with their words but their facial expressions, or body language is conveying a different story.  When I finally found my words and was able to explain my feelings of depression and despair, apparently I did so smiling.  I was unaware that I was smiling; it certainly was not a smile of happiness—more likely it was anxiety slipping past my facade.  When I am anxious I tend to smile, and make jokes (most of which no-one else in the room seems to “get”).

Many physicians commented that I conveyed happy events looking gloomy, and I conveyed very troubling events and feelings that “would bother most other people,” but I was “cheerful, almost giddy.” The particular physician who wrote this comment in my records determined that I was simply lying. That because my affect was inappropriate, it was a sign that I was being untruthful—nothing could have been further from the truth.

A minimum of four physicians, one general practitioner, two psychiatrists, and a neurologist, noted that I displayed inappropriate affect consistently, and none of them put the pieces of my puzzle together. The general practitioner sent me for a psych evaluation, the first psychiatrist decided I had major depression and panic anxiety disorder (by this time I most certainly did), the second psychiatrist determined I was a liar, and the neurologist—that I was crazy and my sensory processing issues were “all in my head.”

It is no wonder that I had tears of relief to find out, finally, the truth—to discover an explanation, a diagnosis that explained not one or two of my symptoms or behaviours but ALL of them.  Finally, someone saw me.

Despite my feelings of relief at receiving a proper diagnosis, depression began to set in. The thoughts of all the needless pain, all the missed opportunities, all the things if only I’d known I could have done differently were hard to banish.

The difference this time was that the depression did not stay very long. I rapidly found a way to communicate with other people like me—with other autistic adults.

I had never been a big fan of online communications, did not have a Facebook page or Twitter account, and had very little use for technology like smart phones—but now I am ruined.  The communities and friendships that I have found online with other autistic adults helped me move quickly from depression to learning to accept my “condition.”

The more I learned about autism, the more I needed to know. I researched, and read—a lot. Then I began to write. Writing—being able to communicate what I could never say with my spoken words has been a freeing and exhilarating experience.

Writing is my form of communication. I may not call someone on the telephone; I cannot stand to talk on the phone. I may not visit, make play dates, or organize night’s out with friends, but I will, if they are willing—write. I will write messages, emails, and chat online—it is the easiest most honest way for me to communicate with the world.

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Jeannie Davide-Rivera

Jeannie is an award-winning author, the Answers.com Autism Category Expert , contributes to Autism Parenting Magazine, and the Thinking Person's Guide to Autism. She lives in New York with her husband and four sons, three of which are on the autism spectrum.
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