How Hidden is Autism?
November 1, 2007 by Kristina Chew, PhD
Filed under Health
13-year-old Megan has Asperger Syndrome and attends a mainstream school in Atherton in the UK and “looks just like any 13-year-old school girl,” an article in Wigan Today notes. When she behaves differently among other students, she has been bullied and misunderstood; her mother, Mel Roach, notes that these things happen in part because Megan’s disability is “hidden”:
…..fellow pupils, and sometimes teachers, fail to understand her condition.
Mel said: “Megan has endured physical, mental and verbal bullying and if it isn’t dealt with properly it becomes like the ripples on a pond, spreading wider and wider.
“I would like to see more acceptance and understanding of people with autism. Inclusion in schools still has a long way to go and I don’t think basic training is enough.
“I would urge everyone not to judge people too quickly. “
I’ve often heard parents note that one reason it can be difficult to do things in public with their autistic child is that, if the child becomes upset or cries out or does something that seems “odd,” there is no obvious sign of the child’s disability. Nonetheless: In the past year or two, my husband Jim and I have noticed that people notice Charlie even when he is not doing anything in particular—sitting on the subway, riding his bike. Charlie and I are pretty much the same height now; it’s his limited speech and (I think) the particular way that he holds his body, and perhaps too the ways that Jim and I interact with him, that suggest that he has a disability. And, too, people where we live do seem to be quite aware about autism: They may not fully understand why Charlie is saying some non-verbal sounds, but it has been awhile since, I said “autism,” someone else said “he likes art?”.
To end on a philosophical note, with a quote from the Pre-Socratic philosopher Heraclitus, “the true nature [what a person really is] loves to hide.” If people know what to look for about autism, they can see autism and autistic persons—-you just have to know to look.
Everyone “notices” Mat but the don’t my daughter who has the same disability (fragile x syndrome). She does her best to disguise it. When she feels the urge to flap she tucks her hands in her pockets. She is only 8 so for now I know her peers are oblivious to those idiosyncrasies. But she reaches middle school age I really do fear that she will get teased unmercilessly over a forgotten flap. (homeschooling her I come!)
It’s not necessarily the Autism that’s obvious, but the variance from what folks perception of normal is.
I have an acquaintance that has a hard time speaking without pausing to search for his words, and his inflections are just not nominal to profile. I have no idea what his disorder is, but we get along together anyway.
I also ride the bus (on occasion,) with a person who has a tic that reminds me of tourette’s, but for all I know it might be CP or something else.
People might be able to tell I’m a bit off, as one of the only facial expressions I have mastered (other than blank or pensive) is the smile, so I might look strange to some as I am always smiling, even if I’m not happy sometimes.
Hearing Impairments are also often “invisible” disabilities. I’ve been treated poorly by college professors and by coworkers because they either didn’t believe that I really couldn’t hear them or because they thought a hearing impaired person had no business becoming a teacher.
I am starting to be a little concerned about this with my 5 year old. The kids do great with him at school because they all know about his autism, but I just enrolled him in gymnastics and the boys in his class are a little taken aback by him. His verbal skills are low and he makes weird noises when he has to wait. But I will say after a couple of classes there is a boy who has stepped off and started watching after him.
“It’s not necessarily the Autism that’s obvious, but the variance from what folks perception of normal is.”
Thanks for that, Patrick—-I do think that gets at how people respond to Charlie—something different about him.
Tracey: Charlie used to take a gymnastics class and what you wrote reminded me of how, at first, he really stood out (I was also there as his “aide”) and then the kids and staff just gradually just saw him as part of the class. Unfortunately, after a year, Charlie aged into another group and the gym was not so accommodating—-he ended up with 3 other boys, 2 of whom clearly had some sort of disability, and minimal social skills themselves; the girls who he used to have some interactions with had moved into a separate girls’ class and Charlie just did not have the skill level. Also, I was told by the staff that some parents complained about my presence. But I do wonder how Charlie would do now; he does such a better job at following directions and listening.
Daisy: A relative has a stutter that has been on and off “severe”—I still recall the awkward pauses in some public experiences.
We have a really hard time with the public, thankfully my son dosnt seem to notice, but it breaks my heart.
We were at the park the other day and my son ran to the swing (he absolutely adores it) and tried to get on it (of course I had to help him). After a few minutes a woman with a young girl about 12 or so arrived. Nothing unusal up to this point. After a while the woman tried to lead the girl to the swing and although she actually followed her, when she was about to sit, she started making weird noises and turned back. Immediately, the woman started calming her down in a very familiar way and then they both left. I thought the girl is probably autistic, but unless that incident happened it wouldn’t be so obvious. I beleive I can distinguish autistic behavior (after such a good home training) but still, unless something like that happens, I’m not able to do so. So, it really puzzles me how people (who aren’t as autism aware as autism parents) stare at Charlie even when he isn’t doing actually anything.
Kristina:
Funny, I am Dalton’s “aide” as well. I joke that I to am taking boys gymnastics. So far everyone is being nice. I have him taking for the social aspect as well as the physical. He is pretty coordinated but like many he doesn’t have a lot of strength, especially his upper body. Them have a “special ed” gymnastics class, buy it gets moved and canceled a lot and I want consitency as well as learn to be a part of something. He loves going. I just have to say, “let’s to to gymnastics” and he is smiling and laughing and gets himself ready rather quickly. We are actually going to get him an ABA therapist after the first of the year to work on several things, one being waiting and paying attention. I already warned the therapy group, that they will have the pleasure of taking gymnastics.
I attended a conference on surgical ethics the other day, and one of the cases that was discussed was of parents of a person with Downs syndrome requesting surgery to “normalize” some of the physical characteristics of their child.
One of the comments that was made was that the somewhat distinctive physical appearance of someone with DS served as “protective stigmata”. That when a person “looks different” that there is often some allowance also made for behavioral differences, whereas if they “look normal” then “normal” behavior is expected.
Joe
Our neurologist has said that Charlie has something distinctive about him—-I think it is how he holds his body and something about how we interact with him. I don’t think he quite has the body language of a child his age and size—-athina, we find it odd, or at least bemusing too that people have these unexpected reactions to Charlie.
I taught autistic gymnastics and took boys’ gymnastics *grin*. But at my most recent gym all the kids with differences take classes with the other kids, the coaches consider it life training for all involved (since life is integrated). It was pretty funny when I joined the team and a 9 year old asked me if I happened to have autism like her brother. “why yes dear, how did you know?” “eh, you can just tell after a few years”
To all the gymnastics parents – if the gym is unwilling to work with you, find a new gym! I teach for our county’s program, and as long as the child is able to function in the class without disrupting the class too much (needing a teacher to follow them around as a helper is fine, as long as they aren’t fighting or completely crazy), they should absolutely be able to be there. Gymnastics has so much to offer all kids; autism shouldn’t get in the way of their opportunities.