I had a conversation today with a delightful young man named Andrew. I've spoken to him and his mother and have permission from them to write about that conversation. It happened during the lunch break and he came up to tell me that his mom was enjoying my talk but that he hadn't been listening very much. I laughed and said I could understand that his mind might be elsewhere.
I'm not sure how it happened, but somewhere in our chat he mentioned to me that he had Autism. I asked him what that meant to him and he said, without thinking, that having Autism explained to him, helped him understand who he was and why he was who he was. Those aren't his words, they're my understanding of his words. He said that before he knew he had autism he thought there was something really wrong with him. But once he knew that there was a word for what he was, he could just relax. "It didn't change me, but it changed how I saw the world." Those are his words, not mine.
Never have I heard a better way of describing why it's important for kids to know who they are, to have a means of identifying themselves to themselves. So many parents don't tell their kids with intellectual disabilities or autism about their disabilities and differences. So many people are terrified of 'labels' I'm not one of those. I believe in the politics of identity, I believe that identity is at the core of self acceptance, I believe that identity will confront shame, that shame confronted will morph into pride, that pride established will change the world.
Andrew, was a kid with a great sense of humour. He told me that when he made jokes about his autism he felt better because he could just laugh at his experiences. I told him that I did the same, it was a great way of releasing stress. We had much in common.
He went away from the stage and back to his mother and as I watched him, I thought, 'Self acceptance, that's the future.' Andrew, no doubt has faced and will face bitter battles with society and those who refuse to accept what he knows to be the truth - that Andrew's identity is bigger than
personality and smaller than Autism, and that somewhere between those two points is Andrew More and Andrew less. Goldilocks would have called him 'Just Right'. And so do I.
Great post, Dave. I think about labels, their value and use, a fair bit. Of course none of us wants to be limited by a label, but they do serve a purpose, and acceptance, both of self and of others can actually be promoted/sped up by an understanding of labels.
Such a bright young man. I think in Andrew's case, knowing there was a name for what he had meant that it existed and affected others and that meant he wasn't so alone.
Very well put, as always.
And, Andrew is incredibly smart and a ahead of a lot of other people. :)
I hope and pray my child is able to take the same attitude toward her disability.
I remember the shock I got when I found out that a young man my daughter was becoming friends with had Aspergers. The shock was not that he had Aspergers, but my reaction . . . which was: A-ha! Now it all makes sense! Which made me look at labels differently, in that they do sometime impart useful information that can actually open, not close, doors to relationship.
When I was growing up, no one realized that I had attention deficit disorder. (It wasn't diagnosed as often in girls back then. And it also wasn't/isn't as often diagnosed in people who have the distraction type rather than the hyperactive type. And once I grew into my teens, it continued to be not diagnosed because everyone assumed that surely, if I did have ADD, it would have been diagnosed when I was younger, therefore I couldn't possibly have it.)
I grew up blaming myself for a lot of things that I now realize are related to the ADD. It harmed my self esteem Since learning of my diagnosis at age 26, I have learned better ways of managing my symptoms and have learned to be more gentle with myself when I struggle to stay focused and on task.
I also have met deaf and hard of hearing people who grew up not realizing that they had a hearing loss because no one explained it to them clearly enough. Or in other cases they were told they had a "little difficulty hearing" but this was very much minimized to them, so they were left with the impression that it shouldn't actually make a difference in how they did things. They grew up thinking they were stupid, lazy failures because they had so much trouble with all sorts of things that seemed to pose no problems for anyone else. It was a relief to realize that they were simply deaf or hard of hearing and that there were other ways of doing things that would allow them to be happier and more productive.
I know usually parents who withhold information about a child's disability mean well and are trying to help. But I think it can actually do a lot of unintended damage in the long run both to the child's self esteem and confidence and ALSO in their ability to learn better skills for managing the effects of their impairments. If you don't realize you have an impairment, it can be tempting to keep trying to do things exactly the way everyone else does them because surely it OUGHT to work if you just try hard enough. Realizing that you have an impairment frees you to find other solutions that may be far more effective. Although I didn't know about my ADD growing up, I *did* know all along that I was deaf, and this allowed me to try out all kinds of strategies for communication that I might not have considered if I hadn't understood.
I grew up with a lot of things that weren't being named. Well they were being named, but the names were retard, spaz, psycho, etc. -- the sort of names that help nobody.
The odd thing though was that getting a label alone wasn't enough. I heard people say I was autistic, after I was diagnosed in my early teens. But I didn't know what it meant. I knew that one book I'd read by an autistic person spoke to my experience in ways nobody else ever had, but even the book didn't tell me what autism was (since it was about her as a whole person, not her as Autism Personified).
I was an adult before I learned what these labels meant. And rather than getting my information from medical texts (which didn't speak to me at all, largely because they talked about outward behavior -- as judged through a medical lens -- that I wasn't even aware I looked like to most people), I got it from getting to know lots and lots of autistic people until I found the similarities and the differences and the variations and stuff of people given this label. (In fact, I learned these things so well that researchers have collaborated with me because I can tell them things that no book about autism can -- about the variation of lived experiences we have, rather than the judgements of outside observers about what our experiences are and must be like.)
It worked the same way with the autism-related movement disorder I have. It doesn't even have an official name -- my doctors have always called it "central nervous system disorder not otherwise specified", which is the most vague diagnostic term I've ever heard. But reading the literature and then knowing a surprising number of people who experience it has given me a map to understanding my own experiences.
And understanding my own experiences has changed my understanding of myself from "worthless person who does stupid things for no good reason at all and can't understand things worth shit and is totally out of touch with reality and keeps getting worse and worse no matter how much effort anyone puts into helping me and therefore is a burden to society and might as well be killed or sterilized or institutionalized like everyone keeps telling me" into "valuable person who experiences the world differently from most people". And it's unpeeled the labels "retard", "tard", "spaz", and "psycho" that I grew up with -- ones that truly fit on nobody.
Mind you, I've been hurt by official labels too -- or by the way most people use them. I've had people use those labels to tell me all the things above about sterilization and death and institutionalization. I'm not trying to take away from that. But they do have their uses, and can be seen outside a medical context (even when their existence is basically a historical accident rather than "discovering a new kind of people" the way people always think it goes).
I am also autistic, and I also feel that I am "just right". The self-knowledge and understanding the "label" brought me helped facilitate my change from a terrified shut-in, to a successful and employed college student.
Amanda raises some excellent and very important points in her discussion above. I agree-it's not enough simply to have a label. If someone is going to put a label on you, they also need to explain WHAT that label actually means--not just what it looks like to other people, but what it means from the inside, what things might be harder for you and what things might still be easy, what the lived experiences are of other people with the same condition, and what strategies others have used to deal with it.
For example: I have known for literally as long as I remember that I am deaf. But I didn't just learn that I "can't hear well" -- I also learned that, yes, it can create challenges for communication, and this is normal and it can be frustrating, but there are also various strategies you can use to get around it. And all the various strategies are perfectly fine to use, and it's fine to alternate among different strategies in different contexts. For example there's nothing wrong with if it makes more sense to read/write as a mode of communication in a particular context rather than speaking/lip reading. It's okay if I use strategies that most hearing people don't use. And if some hearing people seem to believe that it's "sad" or a sign of "failure" when a deaf person can't (or won't) speak clearly or lip read well ... it's the hearing people who are wrong for believing this, not the deaf person for simply doing things differently.
Some of the strategies I learned, I was taught by my hearing parents -- who learned them from deaf adults they met and talked with, and also from various hearing people (parents and professionals) who themselves learned in part from deaf adults THEY knew (as well as from other parents and professionals). Other strategies that I learned, I was taught by other deaf adults. I think I benefited a lot by being able to learn from many different people, including my own parents (since after all they are the ones who were with me every day) but ALSO from other deaf adults. My parents did learn a LOT, but no one can learn all the nuances as well as a deaf person who actually lives it every day.
I hope that some day, more people will understand autism well enough that autistic children growing up will be able to learn not only from other autistic people (which will ALWAYS be absolutely critical, just like it has been for me to interact with other deaf people) but ALSO somewhat from their own parents, teachers, etc. The work that people like Amanda has been doing to teach people what she has learned I think will help this day arrive.
Andrew just "beamed" when he was awake-enough this morning to realize you did, in fact, post about him in your blog. (he's not a morning person ... lol).
To elaborate on why the "label" or knowledge (along with a basic understanding) of his disability was SO IMPORTANT, is because he finally understood WHY he he has encountered significant difficulties socializing with his peers (and others).
Andrew's always had good intentions, and never wants to hurt anyone's feelings; but, because of his social naiveness, he would cross the lines between acceptable and unacceptable social interaction (even though these were NOT wilfull or an issue of maladapting).
The following June 1995 article written by Dr. Fred Volkmar, although it is not a recent publication, clearly explains some of the basic things that Andrew struggled with (and was punished, reprimanded, forced to comply, etc.) Over the years, the problems have been addressed as him having a behavioural problem, whereby he must comply and only have corrective-type intervention such as behaviour modification (which, in our area, is addressed AFTER the child does inappropriate actions,etc.).
Mr. Volkmar clearly explains in the article that:
"The social problems exhibited
by individuals with AS should be addressed in the context of a thoughtful and comprehensive
intervention needed to address their social disability - as a curriculum need, rather than
punishable, willful behaviors deserving suspensions or other reprimands that in fact mean very
little to them, and only exacerbate their already poor self-esteem." - http://childstudycenter.yale.edu/autism/Images/astreatments_tcm339-34836.pdf
And, like what you teach about relationships and individuals with intellectual disabilities, relationship skills are a LEARNED skill, which means they MUST be taught.
So, when we finally discovered Andrew's diagnosis, it answered so many questions that remained in a "fog" of not knowing what to do ... and NOW, we know ... and NOW we can look for the tools he needs to help himself (and for us to help him).
Sadly, when he first realized the connection with what was happening in his world, and his diagnosis, he was at school .... and the TA present with him, actually reprimanded him, and scolded him, and told him he gave all kids with Autism a bad name. (this is even one of the things the school wrote in a document, showing "proof" of their appropriate support).
I'm looking forward to the day when individuals with intellectual disabilities are actually consulted (and oversee) the types of supports which are being provided to them (like Amanda mentioned).
Thank you Dave for helping my son and I to have a voice, and for treating my son with respect.
Elizabeth & Andrew
Can you hear me shouting "AMEN!" all the way from Alliston?
This post is right on. I have read and re-read every word - and the comments too - which are amazingly insightful.
This is a print-off-and-give-to-every-parent-I-know-who-has-a-kid-with-a-disability kind of post. And I'll be doing just that...
I have been thinking a lot about labels (I blogged about it a few days ago) because a new doctor I saw does not believe in the use of the term Fibromyalgia - so now I have no useful label to apply to this debilitating condition and though my body feels the same kind of crappy now I don't really feel like I can adequately describe it to others. With a label comes an identity and with an identity comes acceptance. Great post!
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