Life on the Spectrum

Archive for November, 2016

What is Dyspraxia?

As I have said many times in this blog, I was diagnosed autistic (Asperger) as an adult. It wasn’t until some time later that I learned of the many conditions that can exist along with autism. One of them that I am quite sure I also have is dyspraxia.

Dyspraxia, also known as Developmental Coordination Disorder, is a condition that sometimes occurs along with autism. It is a common cause of executive function problems and may be mistaken for ADHD. Sometimes it is called “clumsy child syndrome” because motor skills problems that cause clumsiness are a common feature of dyspraxia.

Common features of dyspraxia are clumsiness, absent-mindedness, poor handwriting, difficulty following instructions, difficulty putting things into a sequence, and poor short-term memory. As with autism, dyspraxia/developmental coordination disorder is more often diagnosed in boys, possibly because it is more easily seen in sports when a child has difficulty kicking, throwing and/or catching a ball. While girls do play sports, difficulties in sports are more often attributed to such things as “throwing like a girl” than to a problem like dyspraxia. Kids with dyspraxia may be late for school, forget their books and their lunches, and have trouble following instructions in sequence such as “Take out your math book, read pages 9 and 10, and do questions 2 through 6 on page 11.”

When I was a child, I was sent to what was called “learning assistance” because I had difficulty holding a pencil and cutting with scissors. My printing and handwriting were always the bane of my teachers’ existence. I was constantly being told that I wasn’t holding my pencil or pen properly, and I could never draw a straight line, even with the help of a ruler. I still remember a grade 7 research project in which I struggled to copy, by hand, a picture from a book, only to have the teacher call it “the worst picture I have ever seen.”

Of course, gym class was a nightmare. I was the last in every race I ran. The one time I played goalie in a hockey game, I scored in my own goal. A game that was frequently requested by my classmates required everybody to stay on a course that had been laid out with floor mats in the gym, and I seldom was able to stay on the course for more than a few short minutes. I passed gym only because I did my best to get “participation” marks.

Outside school, I learned to ride a bike much later than my peers. I was constantly falling down and it seemed like my knees were always skinned. I stepped on people’s toes both literally and figuratively. My bedroom was something close to a disaster area. My clothes were always dirty and rumpled, no matter how often my mother washed or ironed them. I was late to everything. I probably broke quite a few dishes as well as toys. I remember when I got a job at a clothing store, and my father said, “Well, at least you can’t break clothes.” I sprained my ankle merely by trying to get out of bed to answer a ringing phone. (Thank goodness for cordless phones. I also broke a radio when I knocked it over in a hurry to get to a ringing phone that had jarred me out of bed.)

As an adult, dyspraxia has even caused me to have problems in romantic relationships. I was once “volunteered” by my then-girlfriend to help one of her friends paint a room. Of course, I did a terrible job. My girlfriend accused me of doing a bad job on purpose because I was jealous of her friend. Another time, she and I were at a concert and I tripped over the legs of a chair. Girlfriend confronted me afterwards, saying that she was tired of my “stumbling and bumbling around” and that I must be doing it to get attention. I don’t know what would make somebody try to get attention by tripping over things. I was already embarrassed by it, and having people pay attention to me simply made me more self-conscious, which made me even more likely to be clumsy.

Fortunately, dyspraxia hasn’t impacted my work life too much. Okay, my first job was working at McDonald’s, and that’s not the best place to be when you have dyspraxia. At least I knew enough about my abilities that I asked to not be assigned to work in the kitchen. I already suffered frequent burns from hot coffee and french fry racks. I didn’t trust myself around grills and deep fat fryers. I did, however, drop my fair share of burgers, and I could never get the hang of the lids for the coffee cups, especially at seven in the morning.

I have never been formally diagnosed with dyspraxia, but I am 99 percent sure that it is the cause of my difficulties. I do not have ADHD, and I don’t think I can blame autism for all of my problems. While I have the handwriting problems associated with dysgraphia, I don’t have the language difficulties. When I got my neuropsych evaluation that led to my autism diagnosis, some of the things that were included in the assessment were the fact that I was late to the appointment, that my clothes were wrinkled and food-stained and that I tripped on my way in.

As an adult, there are things I have learned to help myself cope with some of the difficulties that come along with my executive function problems. For example, when I have to be somewhere at a particular time, I find out what bus will get me there on time, and then I plan to catch the bus before that one, if not the one before that one. This is so that I won’t be late if I miss the bus. I also try to give myself extra time to catch a bus. For example, if leaving home at 9 a.m. will get me to the bus stop on time, I convince myself that I must leave at 8:45. (I usually wind up leaving between 8:50 and exactly 9.)

I always ask for written instructions, because I know I will mess up verbal instructions due not only to dyspraxia but also to my auditory processing difficulties. Written lists help in a lot of ways, such as listing every step I need to take to get somewhere, even if it seems obvious to other people. I type everything and avoid handwriting whenever possible. I own my home, so I no longer worry that I’ll get evicted for a messy apartment, but if I do need to clean I ask somebody to do it with me, because I know I won’t be able to do it by myself. I will end up either with one small part of the place spotless and the rest messy, or all of the house just a little bit cleaner than before.

There’s not a lot I can do about my absent-mindedness, as far as I know. Having a cell phone with a calendar on it and including every little detail on that calendar at least helps with remembering appointments and birthdays, though it doesn’t help me remember to take my lunch to work with me. My absent-mindedness even influenced my choice of insulin pump for my diabetes: I chose one that I don’t have to remove when I take a shower, because I know that I would forget to put it back on again.

Dyspraxia/developmental coordination disorder seems to be a little-known and not-well-understood “cousin” to autism. Motor skills difficulties are often included as part of an autism assessment, but they may not be caused by autism. They may be caused by dyspraxia. Absent-mindedness and poor executive function may not be caused by ADHD but by dyspraxia (or by both.) If you or your child is the one who trips over things, drops things, forgets things and/or messes things up, and if an evaluation is within your means, then it might be worth getting checked out. (One note, though; I found that having my flat feet fixed with orthotics has helped to reduce the tripping-over-things part somewhat.)

If your friend or your co-worker drops things, trips over things and bumps into things, their clumsiness may have an actual neurological cause. Please be patient with those of us whose bodies just don’t quite follow the brain’s instructions properly.

When do We Get to Speak for Ourselves?

November 1 is Autistics Speaking Day, also known as Autistic Communication Day, and my topic for the day is: “When do we get to speak for ourselves?” [Please note that I am using the word “speak” in this context to mean the same as “communicate.” I do not want to exclude those who communicate via other means.]

When you read about autism in the media, whom do you most often hear from? Do you read quotes from or see interviews with actual autistic people? Probably not, unless they are Temple Grandin. No, you most often hear from parents of autistic children (or sometimes autistic young adults) or you hear from autism “experts” — psychologists, psychiatrists and researchers. Even Temple Grandin’s mother is interviewed, even though we know that Temple is quite capable of communicating herself through speaking and writing. But the media is fixated on the perspective of parents.

There’s a fantastic blog post called “Person with Autism Manages to do Something.” (Read it here.) It satirizes the usual tone of articles about autism. A “person with autism” (never “an autistic person”) has managed to achieve something that is so surprising to the experts that the newspaper has written about it. They speak to Emily Expert, and they speak to “Joe Autie’s” mom, but never to Joe himself.

I recently saw a movie called “Life, Animated.” It’s a great movie about an autistic young man, but I was reluctant to see it. I was afraid it would portray autism as a tragedy. Happily, it didn’t do that. It was a truly inspiring movie. But at first I couldn’t shake off the negative feelings I had about it that made me not want to see it.

I finally realized why I had such a negative feeling about the movie without even seeing it. I had seen articles about it, and I had seen TV interviews with the filmmaker, and I had seen interviews with the father of the young man the movie was about, but I hadn’t (at the time) seen or heard anything from the subject of the movie himself. (I did later find a clip of Owen being interviewed on “The View,” and doing a great job, though one of the hosts does try to speak for him at one point.)

After reading yet another article that didn’t include Owen, the young man the movie is about, I posted a comment asking why there was no input from Owen in the article. The responses from other commenters said that autistic people can’t talk, and therefore can’t be interviewed. That we can’t speak or communicate (often described as our being locked in a prison) is a huge misconception about autistic people, and I’m afraid it’s one that is often used to deny us a chance to speak (or type or sign) for ourselves. People make judgments about us without even meeting us.

A couple of years ago, I contacted a local newspaper to suggest that they do a story about autism and talk to the members of the autism group that I organize. I got a response from a news reporter asking when he could arrange to talk to my parents and the parents or caregivers of other people in the group. I replied to him that my parents passed away in 2009 and 2013 and that I do not have a caregiver. I wish I had added, “and if I did live with my parents or a caregiver, I would still wish to speak for myself.”