Living Without Question
Filed Under (Acceptance, Activism, Advocacy, Discrimination) by Estee on 27-04-2010
At Toronto’s Sick Children’s Hospital, we got Adam’s EEG done today, I’m relieved to report. Adam, Grandma and I went together and I’m glad we shall get some information after the few months we’ve had (see previous posts on body jerks/spasms). I’m too tired to write too much at the moment — the sedative was so strong I could not leave Adam’s side all day — but, I do have to say that I get asked a lot of questions about autism when I go to Sick Kids. As I try to soothe my son from a stinging needle in his muscle, I get asked
When was he diagnosed?
How did you know?
How did it look?
Was he detached from you from birth?
Did he line his toys up?
Yada yada.
Please don’t get me wrong. I do not mind answering questions, but I also need to attend to my son. I suppose I should say I do not mind in the appropriate context. I would rather come in and answer any question on another day rather than be asked with Adam listening as if he’s not in the room. Indeed, I did mention something as politely as I could.
It’s a bit of an issue for us parents and for autistic people, this having to answer all of these questions all of the time. Yes, I mean every time we step out the door. Yet others have to understand that part of our willingness to answer such questions is also an attempt to be able to move on in our lives without having to explain ourselves — “us” being parents of autistic people or autistic people themselves.
Sometimes I wonder how far we’ve come in autism “advocacy” — if we are doing more harm than good. If people were not classified in the first place, if a statistical norm was never invented (indeed it was in the nineteenth century by the medical and legal communities in order to deem who might be dangerous in society — all based on possibility, not on facts…read Foucault), if autism and autistic people were not as targetted in the media as “abnormal,” if we were truly a more accepting society of all forms of human, we might not have to live our lives constantly having to answer how we exist and how we came to be.
Isn’t this what we’re aiming for — to live without question?
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer/Curator/Founder of The Autism Acceptance Project. Lecturer on autism & the media, and parenting. Graduate student Critical Disability Studies, York University. I like to write about our journey, musings, attitudes towards autism.
I think labels can be both helpful and unhelpful. Helpful because they give us an explanation for what’s going on – my ADHD label tells me that many of the problems I’ve had throughout my life are due to the particular challenges that tend to come along with an ADHD-type brain (e.g., executive dysfunction, hyperfocus, high distractibility). And unhelpful because far too many people ignore the individuals who carry the labels, or choose to blame the labels on Big Pharma, or whatever else pops into their heads. I think the biggest problem, when it comes to stigma, is the lack of acceptance of difference, period – regardless of what the label is that’s been applied.
There are a few issues (LOL – a few!) with the autism label. First, the dx is observational. The fact that we have tried to put a spectrum system on autism has made matters difficult — it in my view has come to lead to much in the way of systemizing moreso — high, low. We know that this means very little if not explained in great detail.
On another level, isn’t it ironic that we spend all our lives answering all these questions when all we want is to live freely — without having to justify our existence. This is more true for people with disabilities, particularly autism even within the disability community itself.
With more people being diagnosed I think that would mean more interest on the part of the medical community to understand because everyone becomes involved. Establishing the velocity to spread education through a system is a dedicated and challenging task. It is, of course, thoughtless to speak in front of a child as though they were not present.
Labels serve a purpose. The purpose they serve now is highly questionable. Could we do awa with them? Probably not. Should we re-invent them to be both more accurate and more compassionate? Definitely.
Are we making progress? Yes. But, it’s not total. I suspect the medical community resists more than general society, yet general society looks to the medical community for insights into the state of others’ being.
As far as answering these questions: I agree. We shouldn’t have to answer them every time we step out. For most, it’s just none of their business. For medical providers, they should have records and they should check their records prior to visits.
I seem to be on the other end wishing people would ask me a question about my son who is almost 7 years old. His name is Michael and he was diagnosed with Autism at the age of three. I live in a small community and I have never been approached or asked about Michael. Just the other day at the Doctors office we had to wait two hours, Michael did his usual; spinning, using pherphial vision to look at people, lay underneathe the chair doing a rythym with his shoes of the chair and so on… I wish people would ask so I don’t have to look as though I have no control when the fact is if I were to stop everything he did I would expect him to become frustrated, they don’t realize that I am actually doing them a favor by not stopping some of his actions. when we seen the Doctor the first thing Michael did was the Rythym again, the doctor was loud and said ” HEY THERE BOY, DON”T DO THAT , DON”T DO THAT.. Michael listened and I walked over to comfort him because he has never heard that tone ever, so then Michael withdrawls and starts making a sound with his mouth, The doctor looked at him strange and that’s when I lost it, I broke down and say MY SON IS AUTISTC, all he could say is ” that’s ok”. I wish I were you so that everyone knew. By the way you are incredible, I love your blogs , you are actually the one who helped me through Michael’s’ diagnoses.. May you and your family be blessed over and over, you deserve it.
Naomi,
I love your comment. It is also true. If we are to use the “label” it would be nice to be able to explain, however, perhaps the acceptance along with it.
It is kind of you to write also what you did about my blog. Thank you so much. It is Adam you have to thank as well. He is my inspiration, as you know.
I always love reading your blog, Estee, because you always say so eloquently what I tend to say less eloquently. :^)
I especially like this comment: “if autism and autistic people were not as targeted in the media as “abnormal,” if we were truly a more accepting society of all forms of human, we might not have to live our lives constantly having to answer how we exist and how we came to be.”
To play devil’s advocate for a moment, it might be good to look at what labels can do to some people on the spectrum in adulthood (namely me):
The label works for some if it helps them get needed services or even peace of mind. I totally understand that. In Naomi’s case, the label helped people to understand her son’s strange behaviours and treat him with more respect. Some people have gone their whole lives wondering why they are so different and why they were shunned so much as children. The label reassures them that they are not alone and they are not a single target…that there are others who have similar issues and that they are okay. That is wonderful if the label works to get the needed help or reassurance
However, I for one am not happy with the labels or the statistical norm because of my own situation. In my case, because of society’s need to put everyone with a label into the same category and this diagnosis, I have to use an alias when engaging in any advocacy activity for fear of losing my job. (This happened 7 years ago when I ended up on the news – very positive story with very negative results. Sure people hugged me and thought I was so amazing, but not enough to do my job, apparently.).
Autism itself has never been a huge problem for me compared to society’s way of dealing with that label. I look and act just like anyone else and I get along just fine. My problems are purely physical and I’ve taught myself to deal with those (because behavioural therapy does not fix physical problems). My medical issues were ignored all of my life because of that label. I almost died because of that label.
Many would argue that I’m just a high functioning person who’s just trying to mess it up for those that actually need help. I argue that, yes, I’m high functioning, but I don’t qualify for services, so I need to make a living. I’m supporting a husband who cannot seem to get work by working three jobs just to pay my mortgage. That “label” doesn’t help me put food on our table or a keep a roof over our heads. It is a detriment in my case. Once we grow up, we don’t get the same awesome medical services the kids seem to get. That all ends when we hit the age of majority. I noticed that when I turned 18.
The “label” also can mean shoddy medical care for an adult who needs medical help and not just more behaviour therapy. I see it every day on mailing lists, etc. One autistic woman I recently met online vomits constantly, every day… cannot keep food down, but has also not been taken to see a doctor by the people at her group home. She might even lose her job. Is this normal? Apparently, it’s just “bad behaviour”, but what if it’s cancer? That attitude nearly killed me 11 years ago. That’s why my doctor doesn’t know of my diagnosis. I actually get proper care now! *S*
The biggest problem, IMO, is society’s way of dealing with things that they don’t understand. We’d like to think that we live in a world that is more accepting of differences in people, but we don’t. There seems to be this driving need in society to label and make every behaviour or every personality difference something pathological instead of what it is: different.
Through today’s supposed “advocacy” and “acceptance”, we end up with even more discrimination, intolerance, and being “written off”. I’ve seen plenty of ignorant advertising campaigns that are meant to raise awareness (the “I Am Autism” video, the ransom notes, etc.)
Sometimes, I think life might have been better before the 19th century for autistic people… or maybe not. Who’s to say? There was not the same driving need to be part of a statistical norm. If you were good at something, not many people cared if you weren’t the social butterfly who couldn’t speak very well. There were no flickering lights, toxins in foods, sounds of vehicles rushing by all the time, etc. to cause a person to react in a self protective manner.
Are the “behaviours” we see with autism really the issue or are they a reaction to our world, the way it is now? Is the pathology really in there, or is it the way society holds people up to a standard? I would love to see more research done on that. There is an interesting issue of Ethos that is downloadable by the public – there are some interesting anthropological looks at autism: http://www3.interscience.wiley.com/journal/118902560/home?CRETRY=1&SRETRY=0
All I know is that it is not so great to have this diagnosis and be doing very well for oneself right now in this supposed “age of autism”.
Oh yes – I also agree wholeheartedly with your comment about speaking in front of Adam like he’s not there. :^)
My parents used to do it all the time and it really used to make me angry. At one point when I was about 8, I recall saying: “I can hear and understand you just fine, you know. If you have something to say about me, say it to me or leave the room so I don’t have to listen to you talking about me like I’m some kind of idiot!”
D.J. said: “Autism itself has never been a huge problem for me compared to society’s way of dealing with that label. I look and act just like anyone else and I get along just fine. My problems are purely physical and I’ve taught myself to deal with those (because behavioural therapy does not fix physical problems). My medical issues were ignored all of my life because of that label. I almost died because of that label.”
This is a real problem for many people, D.J. But you stated and I concur from direct experience, the autism label doesn’t always assist with the understanding, needs and accommodations that certain individuals may need.