Friday, August 14, 2015

Denying Autism & Autism Speaks

I feel I should explain where I'm coming from here, but the title should be pretty self-explanitory. There are people out there who simply deny autism, whether in themselves, their children, their friends, their friends' children, whatever. It isn't so much that they deny its existance, but that they can't believe ____ has autism, despite the signs that might be obvious to the parent, or a doctor, or someone else with autism, or whatever.

I've spoken on this before (I think) that many people did not believe I had autism. They believed I was 'too social' or something, or that because I could socialize, that I couldn't have autism. There were people who thought my son was just a typical boy or something, or that somehow I didn't do parenting right or something. Perhaps they never stated that outright, but it seemed or felt implied.

What I really would like to focus on though, is the fact that denying autism is harmful. It is harmful to the person/child with autism, it is harmful to the parent or friend dealing with it, it is harmful to the family dealing with autism, it is harmful. 

I believe that a huge part of this denial comes from the influence of groups like "Autism Speaks". The reason I believe that is that Autism Speaks is a group that likens autism to something we should be scared of, something that is destroying kids and families and people, and something that needs to be eradicated, like polio or TB or some other disease.

The fact is, autism never killed anyone like a disease would. Autism is just autism. Autism is just a brain difference, a different form of processing system, like someone may have Windows 10, but someone else might have Vista, or a variety of Apple or something. We are not all intended or able to run on Windows 10, and that should be ok. But to groups like Autism Speaks, it is NOT ok, and it must be cured, and upgraded in order to have validity and function in the world.

The mentality behind Autism Speaks is to be able to identify autism as early as the womb, and therefore offer parents a "choice", like is the case in Down's Syndrome. There are still people in the world who will abort a pregnancy based on a genetic test claiming there is a disorder, even though there are false positives and they might be wrong, and the child may have been "typical". 

So, basically, Autism Speaks is saying, through their words and actions, that autistic people have no value to society, they are a burden on society and families, and we should eradicate them through cures or any means possible.

If you know me personally, is that really a choice you want to be forced to make? 

If your child is like me, is that really such a bad thing? 

If it is a possibility that your child might have autism, or your friends' children, or the child of a family member, would you really rather not have that child exist at all?

Would you rather ignore and reject any connection or characteristics to autism, instead of getting the early intervention that many feel is life changing?

We did not get early intervention here. I was 29, diagnosed as an adult, after years of self diagnosis. My son was also older than would be considered "early intervention", but even in hindsight we knew ahead of time that this was going to be an issue, and we didn't feel that it was necessary at previous points to seek for help, but when it became unmanageable in certain ways, that was when we needed the diagnosis to help us to be able to find appropriate help for the issues he is having specifically. Would I have done earlier interventions? Yes. I think I would have, knowing what I know now. It might have been easier to get help ahead of the problems we are having, that would have made the past 2-3 years a lot less difficult and stressful. I think I wished we had the knowledge all along so that we could have met the struggles head on armed with the tools and resources to avoid the huge fights and meltdowns and struggles. We might be playing a little catch up right now, but I'm still glad we are doing all this ahead of the teenage years and hormones! So we are still intervening early.

The point I'm trying to make is that we need to stop fearing autism. Autism is just autism. You would never stop loving your child, what difference does it make if they have autism, and both you and the child need some help to make it through some of life's complex situations? Really, what difference does it make? Are you going to stop loving the child or something just because autism might be a huge part of who they are? It really sounds like nonsense when I say that. But with the mentality that autism is something to be feared and avoided at all costs, that is what we are saying. We are saying that if a child has autism, that all of a sudden they are different than they have been, even when all along that IS what they have been. We are saying that we are glad that it's "someone else's problem" and that we would never want to have to deal with that, when maybe you ARE dealing with it. Is a diagnosis of autism really going to change the fact that your child is who he/she is? 

No, it wont change anything! But it will help open a world of understanding for you that you never had before. It will open a huge amount of resources and people who can help you understand it from a first person viewpoint. And that's another reason Autism Speaks cannot be trusted. They have never had any person with autism on their board. They have not asked for, accepted, or listened to the voices of those of us with autism. They have rejected one such person who tried to be involved in their organization in such a way that he quit and could not work with them anymore. Google it. 

The saddest part is that the mentality that Autism Speaks has spread is prevalent and everywhere, and most people don't know it has originated in a group that has no representation with autistic people. I have yet to find or hear of one single autistic person who supports or agrees with Autism Speaks. Yet people continue to believe that autism is one of the worst things that could happen to a child, even more so than cancer or death, to the point where parents have been led to think about killing their autistic child, and some have actually done it. Death was preferrable to a living child who has autism. Imagine that. Imagine if my parents had done that to me, or I to my child. Would you really drop your kid off a bridge because they have autism? Could you imagine the terror in the heart of that child? 

This is the mentality Autism Speaks, and groups like it, are spreading. If you have a child with struggles that keeps pointing toward autism, stop fearing it! Stop saying "that's what happens to other peoples kids". Stop saying "my kid is too ____ to have autism". Stop saying "that could be the worst thing to happen to my child". Think about what you are saying about those of us who do have autism when you say or think those things. Think about how you are internally or even externally stigmatizing us. And think about how autism will eventually catch up with you one way or the other. It certainly does not go away. Someone along the line will see it, even if it is the child themselves after they have grown up and end up searching for answers to why their life is what it is. Wouldn't you rather your child know themselves all along then to struggle through life feeling so isolated and different and not know why? Wouldn't you rather the people around them know that they have certain differences that make them a certain way, instead of just thinking they are a brat or insensitive or weird or something? 

Don't deny autism. Don't deny it for me, for my son, or for any other child or adult with autism, even if that includes your own.

No comments:

Post a Comment