I was reading Estee Klar's blog this morning and came across a wonderful post called "Living Without Question"
This quote really spoke to me: "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."
The context Estee is using in the blog post is that she gets questioned at inappropriate times about her son's autism every time she takes him anywhere... particularly gruelling medical appointments where she really needs to focus on her and her son's well being and not the questions of well-meaning people.
However, the post spoke to me about labels, particularly the label I got slapped with at the age of 2 and a half.
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 one commenter'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. (See my previous post about aliases for the dirty details).
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 have to work. I have to get by in this world that has such a negative view about autism, therefore I have to hide who I am.
I have to work three jobs just to pay my mortgage and bills because my hubby is still out of work. I'm tired, annoyed and 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 person 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 the group home. This person might even lose the job that pays for things there. 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.) I worry about the autistic children whose names are all over the internet or the news with the label "autism" attached to them. They're doing okay now because they've been supposedly "cured" by the latest and greatest expensive therapy that only former Playboy centerfolds can afford without going broke. What happens when they grow up? What happens if they turn out ok and need to work for a living because they don't qualify for services? They'll be in the same boat I am. The "A-word" will be like the red letter to them: a badge of shame that ensures that they will be discriminated against or written off.
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 (Thanks to the individual who tactfully pointed out that the link was not working. This one does)
I'm not sure that I agree with all of it, but the views are very interesting if nothing else. It makes people look at things from a different perspective which I believe is always a good thing. You don't have to agree, but it doesn't hurt to see things from a different angle either.
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".
