I may as well voice my opinion on this. Everyone else has. Also, I believe, I missed (or am going to miss) the This Is Autism flashblog.
I don’t doubt that it is hard for parents with autistic children. Especially, when many of those parents have undiagnosed autism themselves (I’m fairly sure my own parents are both on different parts of the spectrum – and it being a genetic, neurological disorder that isn’t far fetched to believe) and are dealing with their own struggles. However, much of what I have read of the Autism Speaks “Call to Action” and the personal hell for parents of autistic children that it describes (admittedly I did not read it all – I skimmed because I found it upsetting and triggering of anxiety that I did not really think was worth experiencing just to finish all the letter) seems to be describing what happens when you do not (or can not) give your child what he/she needs. Structure and understanding. I have no experience with non-verbal or unreliably-verbal autistic children (or adults). I only know what I have read. And I know my own personal experiences with my own childhood. I was very verbal but no more easily able to handle the inconsistent NT world. I also couldn’t always reliably explain what was wrong. I didn’t always know. I only knew that something felt wrong and it made my skin crawl and my head hurt and made me want to escape (only I had no idea what I wanted to escape from). I could at least attempt to explain what was wrong. If I couldn’t have at all and my mother hadn’t tried or been able to figure out what was wrong I know what would have happened. A full on public meltdown complete with throwing things and biting my arm and head banging (I don’t recall doing this as a child – I only remember the biting and scratching myself to control the building up anxiety and anger but since I head bang now I imagine I may have done it as a child. Unless the head banging is a result of the more aggressive meltdowns I get now since I tend to hold them off for longer). As it is I don’t remember ever having meltdowns in public. I would get anxious and upset but I don’t think I ever threw things or screamed (that was mostly the extent of meltdowns in private then to the best of my recollection – they got more aggressive as I learned to control them for longer). I would dig my nails into my arms a lot to control the “anger” I felt. I would also bite my arm sometimes but whether I ever bit myself in public I don’t remember. I imagine I did at least once and was told not too and thats why I didn’t still do this later on. I would have to ask my Mother about this and I probably will for my book. Anyway, I can imagine it is difficult for parents of autistic children. Difficult in many ways. Some of these parents may even feel like they are trapped in hell. I’m sure SOME do.
But that is the key word “Some”….some do. Not all. All parents want the best for their children and those that see their child in pain I’m sure won’t to help them. Some may even want to cure them of the neurological disorder that causes some of this pain. So, I can understand how hard it must be on parents. Both for their own personal reasons and for their worry over the well-being of their children.
But many of these parents also realize that the pain could just as easily be decreased (if not eliminated) with some understanding on the publics part. Especially for those of use that are able to communicate to some degree. How about not making us feel like we are being embarrassing if we rock back or forth (or side to side), fidget with things, tap our foot, twirl or jump up and down. Don’t ask us if we are alright or if we feel ok if we stare off into space. Don’t look angry if we talk a bit to loudly (or yell at us if we talk to quietly). Don’t get mad if we can’t understand what you are saying until you repeat it 5 times. Don’t assume we don’t understand just because we can’t respond. Don’t push us to answer questions when we are already upset. Don’t push us to be just like you when we really can’t be like you. We are not you. A lot of our pain is caused by others not being understanding. By others not listening or taking in to account how we feel.
That is exactly what Autism Speaks has done. They have spoken out as if they are speaking for everyone in the Autistic community without taking into account how they may be making that community feel. Even for those that may feel like they are in a living hell, I can’t imagine any parent who would want their kid to be aware that they feel that way. So, even those that relate to those things said in the Autism Speaks letter likely are not happy about it being said. If someone said these things in relation to themselves then that would be one thing. I would be sympathetic but that was not what was done. They were said as if they were the thoughts and feelings of everyone connected to autism. That is what upset me and what seems to have upset everyone.
Not only that but they repeatedly used the phrase “This is Autism” without actually seeming to understand anything from the point of view of the autistic community. If you want to know what is autism then ask us. Don’t make assumptions.