Disability Or Different Ability? What Difference Does A Word Make?
Over the years I have read many blogs written by those who were newly diagnosed as having some form of autism that was never diagnosed when they were younger. I have read their struggles and acknowledged what they felt and even understood it because many of the discussions were familiar to me.
I have never been diagnosed autistic, I am unlikely to concern myself with getting diagnosed that way. The reason being that I function well within a normal lifestyle, I am a public person, having run repeatedly for public office and in some cases getting a fairly decent amount of support even though I do not win. I enjoy what I do and I enjoy who I am.
I also am the parent of an autistic child and I see him and look at myself and see a world of difference between what he is and what I am. The struggles that affect me are not the struggles that affect him and to pretend they are is to minimize what he goes through on a daily basis. See while at best I could be classified as having had a very mild form of Asperger’s when I was younger, my son is a non verbal classic autistic. He has minimal words, very little fine motor skills and he stims regularly.
So why do I bring these points up? Because I realize that it is highly likely that what I felt growing up and the difficulties I faced in specific situations likely does mean that I to fall into a spot on the scale as well or more specifically I would have when I was younger.
See, if you read back, I said earlier that I was a public person, I ran for public office (not just once but four times so far) and I am not done. This means that I also stand up in front of others and in front of TV cameras and debate with others who are running as well. And I am good at it, maybe not good enough to win, but I enjoy it and I don’t embarrass myself either. Before I left school, the idea of standing on a stage talking would have made me sick to my stomach. I managed to get through it.
So why is this all important.
It is not, if it is taken on its own. However, growing up this way, and seeing those who went through the same things as I did, putting the way my son is, on the same level as how they are and denigrating the fact that we know without question he will likely have limits in his life helps me put in perspective for myself how different autism is. See today, no one would know that years ago I probably could have been diagnosed. Given the changes I have made in my life and the barriers I have managed to break within myself, It is highly unlikely it is even possible that I would be diagnosed at this point in my life. So yes we can make improvements in our lives. However we also have to realize as well, that not everyone can make these changes, and not everyone is so close to a borderline that they can go on to live a full life the way I and others on the more mild end of the spectrum have managed to (and even some few on the extreme end who managed to find the trick to breaking their barriers as well)
Is there still any remnants of that part of me left? Yeah, I still have a few. They are minor, but they exist. I prefer a rigidity to my schedule that often does not exist ( I work through that one daily) and I have a very extreme version of right and wrong and am often willing to take a stand on issues that people would tend not to even address. Why because for some reason to me these seemingly minor issues to others is a big deal to me personally. Can I get through them? Yes most of the time. But not always.
The real reason for this is to explain that there is a difference between me and my son. I might have been able to claim a borderline diagnosis years ago (unlikely to now) but he is likely to never be able to advance enough to actually live on his own, he is likely never going to be able to advance enough to get married and raise kids of his own. Will we work to give him every opportunity to get to the best level he can get to? Without question. However, we are also not going to fool ourselves into thinking that he is guaranteed to live a relatively normal life either. We love our son and would not trade him for anything and we realize that he is likely fully happy the way he is. We do however still wish that life had not dealt him such a raw deal. We wish he had the same chances everyone else his age has. We hope that he wont become the target of bullying and abuse. We also realize that wishes don’t make things happen and that he will not have the same chances others in his age group will have, he likely will become the target of bullying (and god have mercy on the kid/adult we catch doing it, because we won’t) but we are not going to diminish his condition by pretending that he is not at a serious disadvantage to others his age, we are not going to pretend that he does not have a disability because the reality is he most definitely does.
Refusing to classify it as a disability for those who actually need that classification makes it harder to access the needed tools to give him the help he needs. It also means that governments and charities are far less willing to provide help and support and research funding to a group where the affected spokespeople all swear left and right that what they have is not an actual disability.