Sunday, October 16, 2011

The Challenges We Face With Autism

Having autism means always feeling like an outsider. It means watching while seemingly everyone else engages in some kind of complex social contract with one another that they all, somehow, understand... but you do not.

The other day we had a birthday party to go to for a friend. It was a sea of about 45 people and we didn't know anyone there. I've always had a lot of trouble with small talk. I don't understand how to do it, and frankly I don't see the point of doing it. It's always felt like a nonsense waste of time to me. I've noticed that most people do it though of course, it's like a social ritual for breaking the ice. For a short time I can act a part, do a bit of smiling, silly, nonsense talk just like everyone else. But I don't have that skill many seem to have of being able to carry on a conversation about nothing. After two or three exchanges the other person's face changes, their eyes wander, they excuse themselves and go to another group. I watch as these people continue the ritual of ice breaking... successfully this time... and end up laughing and talking for the rest of the night with each other. I never understand what I do differently, but clearly it's something.

With high functioning autism you do have friends. These are people who somehow can see or force past the initial awkwardness. I am perfectly able to have great conversations, when there is a topic. It's just the empty small talk I can't seem to learn how to do. Meeting new people is very challenging. It triggers the fight or flight response. You feel like a wild animal in the zoo being stared and poked at. You just want to hide and run. The social demand of making eye contact can be an excruciating challenge. I'm aware that most people read not looking in the eye to be some cue for shiftiness or distrust. I wish that people would understand that with autism it's extremely uncomfortable. The clerk at the grocery counter might as well be a lion ready to pounce. That is how it feels. It is also hard to both talk and make eye contact at the same time. The flight or fight response gets so triggered that it becomes difficult to think. I tend to look off into the distance when I talk so I can gather my thoughts.

I gradually came to understand that I have autism after both of my children were diagnosed. I read about what it meant to be autistic, the challenges that come up. And it was as though all of my childhood (and adulthood) suddenly had a light of clarity shone on it. THIS was why things were so hard for me. After reading a couple of Temple Grandin's books, I asked family members to read them too. They reported that the way Temple's mind works as 'fascinating'... to me it was perfectly normal. My brain works the same way. It was only then that I started to understand that I see the world very differently than most people.

I don't have health insurance right now. I paid out of pocket to go see a psychologist and asked her to evaluate me, I told her about my children and my suspicions. She balked at me. She insisted that if I were autistic "surely SOMEONE would have noticed when you were a kid". She was confused as to why I would even want to know. I explained to her that if I had a diagnosis, I would not feel like a failure. I would then be able to say "Ah, these are the reasons these things are challenging for me... and that is okay." She did not understand or agree and refused to evaluate me. Soon we will be at a different point in our lives and I will have health insurance and I will find another doctor. Some reports say that autism is about 600% more common than it used to be only 20-30 years ago. I submit that they should test all PARENTS of autistic children for autism as well, as I suspect a fair helping of us are also on the spectrum, and are not being counted.

Negotiating in a work place has been a real challenge for me. The whole "office politics" thing that happens, at every job, is very difficult for me. I tend to take people at their word and I don't understand or expect people to be misleading or manipulative. Having to try and make my way around all of that causes me very severe anxiety. Having my children at home, needing all of their therapies and help, I have begun to work from home on my jewelry. That I think is going to continue to be a much better option for me. Somehow many of us with autism can communicate effectively online. Being able to read the words without the pressure of having an immediate, socially acceptable response (WITH eye contact)... all of that is removed, and we can communicate much better.

It's not just social issues. Physically the sensory issues can be really challenging. Bright lights, sounds, and textures can be painful. The sun is my enemy. Crowds are difficult. The smells of people's perfumes make me ill. Clothes can be torturously itchy.

My children have come very far. I've had several other autism parents tearfully ask me, what am I doing that they are not doing? I can't answer that. For one thing, I don't see it that way. Each person and child with autism has different challenges, they are similar, but different. I don't think I do "better" with my kids than anyone else does with theirs. For another, I think I've been able to help my children negotiate the world with their autism because I already have made my own road map through facing my own challenges. I know where they are coming from, so it's easier for me to lead them.


  1. You and I...we are the same. Every word you just wrote could have come right from my mouth...Know you are not alone!!! Love you<3

  2. Thank you hun!!!!! It was hard to press 'publish' :-)