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Autism Awareness Month is coming to a close. I’m looking forward to seeing less chatter about it on the internet from the big name news sources.
As the month comes to a close, I want to share a few personal thoughts on autism and, what the heck, add some of my own chatter.
- There is not one cause of autism. There are probably are dozens. Some genetic. Some environmental. 5 to 20 years from now, a bunch of new and more specific types of autism will emerge.
- Finding those specific types of autism and their causes will lead to a huge and dramatic increase in our ability to early diagnose, early educate, and design individual plans to help people with autism; both genetically and environmentally caused.
- There are no absolutes in autism. I’m pretty sure my son was born with autism. Your child might not have been. I promise not to get mad at your disgust with the vaccination system as long as you don’t act like fixing the vaccines will end all new cases of autism. I promise not to get mad at you wanting funding for some form of therapy as long as you don’t get mad that I’m not going to be using that same form on my son. There’s a good chance we both can be right.
- There is a lot of negativity in the autism community toward the government, schools and pharmaceutical companies. Some of that is completely valid. Most of the negative overexposure is the media and Internet’s fault. People who are mad make for good news programming. People like me that are happy with life and happy with my son are probably just too boring. A sizable portion of people on the internet talking about autism seem to be activists and they seem to be aggressive and mad. When I learn their stories, I understand where that anger comes from and I believe that their life outside of the media is much happier than how they come across. But I’m sure that for every one of them, there are 100 people with autism in their family just happily going about their life without spreading their happy stories on the internet. It’s the same reason why you have to take negative product reviews with a grain of salt.
- I cannot be an angry, aggressive activist for autism. I would become too bitter and too disgusted with the push back against whatever I was fighting for. That would definitely trickle down to Pookie. I would become bitter and disgusted that he was a part of all of the stuff making me bitter and disgusted and I would wake up 20 years from now regretting each day of those years. Some days I’ll talk about issues that we are having with Pookie but it is always as part of my search for understanding how I should be dealing with a certain aspect of his life. I also always try to write about what happened to get those issues resolved. Sometimes a rant will sneak into a post but I always try to squash that type of writing because it is not healthy for me.
- Pookie is more than a diagnosis. He has autism in the same way I have a astigmatism. The autism can help describe some of the ways he is different than other 6 year olds but people should be aware that in most ways he is the same. He puts his pants on one leg at a time just like everyone else. He just sometimes prefers to wear them backwards. Some of the coolest games that are played in our house were created by Pookie and instantly adopted by Geetle because of their awesomeness.
- Pookie is part of a larger family. Our family is not defined by him having autism. We drag him around to a lot of things that he doesn’t like because that’s what families do. We drag the rest of the family to things they might not like on his behalf because that’s what families do. We don’t make him eat dinner separately from the rest of us because that’s not what families do.
- I will always be a vocal activist for Pookie. I will constantly strive to introduce him to the world as the fascinating, amazing, smart, loving, opinionated person that the world might miss if I stayed quiet. I will always work to remind people that when he might seem to be crabby or angry, he is either trying to communicate something that he cannot express or is just being a typical little boy. I will always try to display the constant ways he makes me happy and challenges me to learn new things and in the end makes me a better, calmer, happier father.
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I like how you said Pookie is more than a diagnosis. In working in the special-ed field, I sometimes see people classify children as their special need. “This one’s Down’s, that one’s autism, blah, blah, blah.” And to that, I give a big SO WHAT? I am near-sighted, I wear contacts. That does not define me as a person.
This is such a great post!
Great post. You are lucky to have Pookie in your life and I’m sure you feel the same about him.
Hi great Dad and Mom!
We too are parents trying to figure out our 6 year old autistic son and what is going on inside his head. Daily we are amazed and greatful for him and the smallest of s uccesses. We have not focused much on the why’s these last 4.5 years but mostly on what can we do to help him grow as a person. I found your blog looking for info on poopy training an autistic child. We are nearly done but for this last big piece. I agree that having let him do this at his own pace has definitely helped. However, we just figured out that he seems to feel he needs to go standing up in his pull ups and that sitting down is the problem. Any suggestions, impressive gurus of parenting? BTW we use Cheetos for successful tolieting and even that didn’t work. He had to go and still managed to hang on, for an hour and half, crying and complaining. We are trying not to have him avoid going to the potty all together, if he comes to associate being trapped in the bathroom with potty training. Thank you for at least listening.
Sincerely kandbf