This post originally appeared at http://smallbutkindamighty.com/2012/04/30/sbkm-to-i-wish-i-didnt-have-aspergers-autismpositivity2012/ and is reprinted here with permission from the author.
SBKM TO I WISH I DIDN’T HAVE ASPERGERS: #AUTISMPOSITIVITY2012
Please go here to read about what prompted a number of us to blog today, see links to all the Autism Positivity blogs and, so no-one feels left out, read contributions sent in by folks who don’t have a blog.
With respect to my contribution… Well, I don’t feel able to address ‘I Wish I Didn’t Have Aspergers’ directly. There’s so many wonderful blogs by individuals on the spectrum that I hope you read something from them that speaks loudly and personally to you. I’m one of those neurotypical types and honestly, I can’t even begin to presume to understand what your life is like, so instead, if I may, I’d like to address you indirectly.
Those of you who have read my blog before know I feel no need to wish for a cure for my sons’ autism and that I don’t hate their autism either. Leah Kelley wrote a wonderfully eloquent postlast week, which really encapsulated what is for me a crucial point – that even though we understand where other parents are coming from, our children’s self-esteem is endangered when they hear people say they hate autism. We know that children on the spectrum are at much higher risk of being bullied and of being bullies themselves. Bolstering our kids’ self-worth is crucial if we hope to do anything at all in terms of reversing this trend.
One of the things I want to state clearly and unequivocally about autism positivity is that, for me, it does not preclude venting. I’m privileged to be in the position of knowing many other autism parents online. Those parents who know me well will tell you, I don’t care what your position is on vaccines or person-first language, or anything else for that matter; if you are having a tough time, I’m there. Sometimes all I can offer is a virtual hug but I understand that what we go through as parents is difficult and autism positivity is not seeking to minimize that. A good friend of mine, who is also someone supportive of the concept of autism positivity, has, like myself, more than one son on the spectrum. This friend found out a couple of days ago that her youngest child and only daughter likely has Asperger’s. My reaction to her sharing this news wasn’t “Woo hoo! Congratulations!” because I understand that this is tough for her to digest. She needs time to process and get used to this new reality but I know she will and she knows I’ll be there for her every step of the way.
So what am I trying to do here? Well, a lot of my blogging about my boys’ autism is a way for me to process my feelings, hopefully in a way that ends up making sense. What I’m also secretly hoping against hope to do, is maybe reach just one parent and help them start on the road to understanding why hating their child’s autism does nothing to help either themselves or their children. In my opinion, if you hate your child’s autism, you haven’t yet come to terms with their diagnosis. A lot of people don’t want to come to terms with it and that’s their prerogative, but keeping hate alive requires a lot of energy and personally, I’d rather that energy was focused elsewhere. We’re all so (excuse me) fucking tired, why waste the precious energy we do have fuelling hatred?
In practical terms, you may be wondering, well how does one just stop hating autism? It’s not like you can just flick a switch. In some cases that hatred is long-standing and deep-rooted and it’s going to be tough to get rid of. One of the best techniques I have found to re-frame the way I think about my sons’ challenges is one I learned indirectly, from attending ABA workshops. I know a lot of autistic individuals have concerns about ABA, but I have found it extremely beneficial in terms of fostering an understanding of my children’s behaviour. So I’m going to use it as an example of how you can start on the road to stopping hatred of autism.
In learning the process of how to record data about behaviours, over and over again I was told and shown how to be descriptive and specific about behaviour and not assign value judgements to it. I was taught not to record behaviours using language like: ‘Oliver behaved badly’ ‘Owen was upset’ ‘Oliver behaved inappropriately’ ‘Owen was angry’. Instead I use descriptions like: ‘Oliver pushed Owen’ ‘Owen covered his ears and bent over’ ‘Oliver kicked his playmate’ and ‘Owen banged his head on the table’.
Looking at behaviours in this way was a revelation. It drained away the very strong emotions these behaviours often generated in me and I was able to see them for what they were: communication. I didn’t (and still don’t) always understand right away what my children are trying to communicate, but I was a step closer because recording data gave me more information. What has come across loud and clear to me is that these behaviours are not their autism speaking; the behaviours are how my children express themselves when they don’t otherwise know how. Aggression towards Owen (for example) is not Oliver’s autism. Oliver’s autism means that at times he has difficulty expressing himself and this is particularly the case when he is anxious. Oliver’s aggression towards his brother is an example of him trying to tell me something when he doesn’t know how else to do it. What I have been helping Oliver to do is ensure he knows he is heard and teach him strategies to cope with his anxiety and stress. As he is learning all of these things his autism isn’t receding but the aggressive behaviour towards his brother is.
If you find yourself thinking or saying that you hate autism, try instead to focus your attention on what it is that’s problematic for you and your child right now. For example: ‘I hate that he bites his nails so much that his fingers bleed.’ ‘I hate that she plays with her poop when she has a bowel movement. ‘I hate that he can’t tell me where it hurts.’ Focus on the specific issue rather than expressing a generalized hatred. Then work on how that issue can be managed, redirected, or resolved.
In my verbose and indirect way, I now come back to ‘I Wish I Didn’t Have Asperger’s’. It’s my belief that whatever you’re struggling with isn’t your autism. Whatever it is, there are ways you can get help and support. Once you find the help and support you need and the challenges you’re facing become more manageable, your autism will still be there. And that’s not a bad thing.