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.


19 thoughts on “Depression and Asperger’s Syndrome

  1. You write so well and I don’t think it matters how you communicate, just as long as you do. Ironically, the rest of the world seems to find it easier to communicate online too these days so does this mean, at least in one way, you have become NT? 🙂

    • Well, I hope not! LOL

      But you are right many people are now finding it easier to communicate online. I think the difference is that I found it so difficult to communicate before, and much much easier now. I think it is the size of the divide.

  2. Thanks so much for your blog. I have found it to be a revelation of sorts in that I recognize myself in your experiences. I have found it a difficult road in my area to get a real Asperger’s diagnosis. I’ve been treated for Bi-Polar disorder, anxiety, ADD and depression with little success. When I talk about Asperger’s with my doctors, I get treated like a hypochondriac.

    I too, find it easier to convey my thoughts through the written word. I go blank when trying to speak of these things. I must seem like an illiterate imbecile to some people when I’m asked questions. My answers tend to be too simple and even monosyllabic. This drives my wife crazy. She perceives my answers as noncommittal or evasive. Writing allows my thoughts to focus enough to make sense.

    • It is very common for adults with autism to be diagnosed, or discover, that they too are on the spectrum only after their children have been diagnosed. Due to the genetic link in autism this does not surprise me. My situation was the opposite, where I was diagnosed first because I never thought that my children’s “odd” behaviors were anything but normal–after all, they are just like me!

  3. Inappropriate affect – yep, that’s me. It’s nothing I’ve ever really thought about, but now that you mention it, I can see it clearly. I think it’s more pronounced when I’m happy and explaining the source of my joy, sometimes it’s so incongruous that people will actually ask me why I’m not smiling when I’m talking about happy stuff…

    • Up until the point where I questioned what the doctors were writing in my medical files (yes, I requested copies to read to find out what they thought was going on) I had not heard of inappropriate affect, and I certain had absolutely no idea that I was displaying such seemingly contradictory expressions.

  4. I was hit with depression when I went to university, and then everything else became so difficult. My mum denied that my friends and I were autistic – then had training to deal with a child whose autism had been recognised pre-school, and so realised that I and she were autistic. My depression seems to mean that situations I could have coped with a decade ago are just so difficult to deal with these days.

    • I have been reading conflicting reports about autistic traits “symptoms” become milder with age, but I think for me the opposite is true. Age has brought more responsiblity, more stress, more crap to deal with on a daily basis thus exasberating my traits and when life is overwhelming the depression hits. As you said, what I felt like I could have delt with a decade ago does seem more difficult these days…

  5. You bring up a really important point about social interaction and communication skills. There needs to be more inclusion, more play dates and more fun between the neurotypical population and the neurodiverse population so that when kids with special needs grow up, they have more developed social skills.

    • I know part of my problem with “play dates” is that they tend to be getting together in the park with other mom’s to chit-chat while the kids play…that is my idea of torture. It is uncomfortable, and I sit there longing to leave, wondering what to say, wishing I was somewhere else…anywhere else. There is no structured activity to participate in, it is just random meaningless conversation–that is part of what I cannot do.

      Besides, I cannot remember when the last time I was invited to a “play date” was… maybe 2007??

  6. Great post – and what you write about the outward affect is true for me too. I have been told in the past that I do not look depressed. Incredibly thoughtless and lacking in insight.

    I would agree too as to the onset of depression. I think it started in late adolescence but I had my first major episode at age 19. The other prolonged bout occurred when I was 30. I generally cope well but at times, find that this ability to cope does me no favours. I use up so many resources “coping” that it is almost as if I leave nothing over. Then I become very down and start to wonder what the point of it all is.

    I have children. I feel grateful every day for that. Their welfare is my prime concern and I channel all my energies into them. They keep me going because I think otherwise, it would be so easy to give up.

  7. I liked Trevor’s post. My son is very depressed. He is verbal but does not socialize at all as he does not trust his voice to sound typical enough. He is isolated and sad most of the time! I’m so distraught as to how to help him. He is 16 and very sweet, no tantrums, just anxious and depressed alot! He would benefit from some neurotypical teens as well as all the aspergians in the social skills groups but none available here in Denver : ( The groups never work for him anyway…they make him feel worse actually as his condition is usually less severe as most kids. But his sadness is quite severe and we have tried SO many antidepressants with no luck..Zombied him out. Help please? I just want something to elevate his mood, reading mixed things about marijuana in small edible doses. Any though

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