I have read through many many blogs on autism since I've started Raiyan's. Initially, being trailed by insecurity, naivety and credulity, I was easily influenced by the varied opinions expressed by these bloggers, who mainly comprised of parents of autistic children and autistic adults.
I think it's quite natural for parents upon receiving the diagnosis (especialy in Brunei when denial against autism is still quite prevalent) to want to "cure" the child or rid him or her from whatever that is causing him to be different. Different not only from our own expectations of how he or she should be but also (however shameful it is to admit) from other people's perceptions of how your child should be.
So, we naturally sought whatever available therapies for Raiyan and grabbed whatever we could find. Of course Jeff and I have never stopped being thankful for having Kerri and Jo enter our lives. They not only have taught Raiyan the ABA way but they have completely and utterly done so with the constant belief that each and every aspect of the programme caters specifically to Raiyan's personality and being, and which always considers both his potentials and limitations. I know ABA in its most general terminology can sometimes be viewed as bad by some neurodiversity supporters because it is said that its objectives are to "normalise" the child and make them "indistinguishable" (even though those are often false dreams aspired by newly diagnosed autism parents..) and even worse are those accounts of the earliest Lovaas methods that use excessive force to the point of abuse on the child to be part of the therapy. Learning Ladders Blogspot has very effectively described the "kind" of ABA that we use and to add on that, all of us parents (and Kerri and Jo for that matter) do not employ or let alone, do not agree with the philosophy and techniques the type of ABA therapy that those negative views are placed on.
Anyway, back to the point of this post. After reading the many opposing opinions on autism, mainly surrounding the need to cure and how that is considered offensive to the neurodiversity group and also the more widespread one these days which is whether or not vaccines causes autism, my thoughts have probably leaped from one understanding to another as frequently as Raiyan's hyperactive need to constantly run from one end of the room to another.
Though at first I was appalled at the comments made by the ND group ridiculing us parents who wanted to "cure" our child, now I'm thinking perhaps I was too quick to place myself on the side of those who indeed yearns for their child to cured or recovered. This is because I have learnt that those on this side of the debate seek to one day have their child to not have autism anymore. After just a month or so after the diagnosis, I soon began to realise that this is not what I hope for at all. My main worry about the autism is how it is affecting Raiyan's communication. The other aspects of his autism, like his repetitive behaviours and reluctance to try new things, though we are trying to improve as much as we can for now, are actually tolerable and to us, and are a completely acceptable part of him (It's society that takes issue with them more). I think it's just a matter for us parents to control its timings and frequencies as opposed to eradicating them altogether (just like how typical children are disciplined and prevented from behaving a certain undesired way too). After understanding Raiyan more, I clearly see that him doing the things he does makes him so blissfully happy. And if the worst thing that happens from him hugging some random child is for others to regard him as strange then I don't mind so much that he does it. Rather, I would more think those persons are the ones with the problem!
One thing that puzzles me is this one overlap that seems to run its themes across all these autism mommy blogs and these are pictures and pictures of how happy the child is, regardless of which autism camp the mommies belong to. For those in the camp that wants to cure their child, pictures of their child going down the slide are usually elaborated with stories of how before the therapy, he wasn't able to even go near the playground and now LOOK! Another step towards recovery. What you would read under a similar picture in a neurodiversity mom blog would then be something along the lines of this is my autistic child and how happy he is going down the slide. Basically, they are more portrayed as being able to do that kind of thing anyway.
I didn't plan for this post to be a long one so I'm just going to abruptly cut it short here though there are many other thoughts going through my head now. It's just that I am really really getting tired of reading about all this in-fighting when to me it seems clear that all the parents want is to see their child happy. Maybe one side may think the other side is doing it the wrong way and in the end, may risk doing more damage to the child-but that is for them to find out themselves rather than being told or dictated on what to do.
Like me, I managed to slowly turn around... With a more open mind than before, I am beginning to really grasp now what the ND group is trying to say, despite all the hostilities and harsh words sometimes used. In turn, I have also discovered some unpleasant comments made by the side that wants to cure that I'm as equally appalled with them as how I was previously appalled with the neurodiversity group.
I don't actually promise that I'll stick with this opinion forever. My journey with Raiyan, insyaAllah, is only just beginning and I have a whole lifetime to look forward to discovering Raiyan, understanding Raiyan and also to learn more about autism. The thing is at the moment, I kinda need both sides to learn from as I really honestly feel there are pros to each side's story. I only wish I can continue learning without having to play witness to people being so nasty and hateful to each other.
0 comments:
Post a Comment