CAFE Bonnie: Coffee Autism Faith Explored: March 2009

Friday, March 27, 2009

To embrace autism or not to embrace autism that is the question... or is it?

Right now there are two groups advocating for autistics, one is committed to doing all they can to find a cure the other is fighting for neurodiversity. Those fighting for neurodiversity don't see autism as tragic, but as another way of being and think that those focused on a cure are rabid "curebies" who don't appreciate autistic people. Those focused on finding a cure feel the other group is crazy and counter productive.

So what do we do? Embrace people with autism as they are, or do all we can to find a cure and provide as much intervention as possible? I don't have the answers but I can say I've been walking down this road for over 10 years now. As I grow in my understanding of myself, my child and my autistic friends my perspective has changed a little.

First off let me say I have done everything I could to help my son. We've tried many approaches some worked and some were a waste of time, money and energy. My son is doing incredibly well, he no longer exhibits self injurious behavior, he is verbal, high functioning, and probably would be considered to have Aspergers at this point. I continue to work with him on social skills, I continue to work with him on self help skills. Possibly one day he may be able to live on his own we don't know yet. As my son and my friends kids have gotten older I have seen some kids respond amazingly well to interventions and some didn't. My son is going to be fully mainstreamed into high school next year. My dear friend's son just went into a group home for the safety of herself and her son. Another friend's son is a little quirky but wouldn't be considered on the spectrum.

The therapies that my friends and I fought for and lost our homes, marriages and sanity for are now considered routine, safe and effective. There is now irrefutable evidence that shows kids on the spectrum can learn if given the right tools and mode of instruction. (G did not turn into a robot after participating in ABA...) Are all kids getting all of the services they need at this point, no. Does more need to be done, absolutely. Do we need to research why the incidences of autism are increasing, I personally believe yes we do.

However, there is another side to this. I want to remind everyone, despite the claims being made by a variety of people, at this point there is no cure for autism. My son is not neurotypical and most likely never will be. My focus has begun to change. I'm not looking for a cure, I'm looking for understanding. I love my son, I love his personality. He is a visual thinker who has a fascination with flight, air flow, and wing design.. he is 13. (BTW Math is his favorite subject.) I have a feeling he's going to make an incredible contribution to society some day. I love the person he is becoming. He's going to need extra help in life, but my desire, my passionate desire is that people will embrace him as he is.

I also want him to feel proud of himself, of who he is. He doesn't need pity, he needs understanding, and some accommodations. At this point do I want him cured? No way, as my friend Temple Grandin once stated, "why would we want to cure all of the autistics? We would lose all of our scientists, engineers and computer nerds."

My bottom line is this. Yes let's keep looking for a cause, and fighting for appropriate interventions. At the same time as our kids get older let's celebrate who they are becoming, be proud of them as they are, celebrate their neurodiversity, and continue to support them in any way possible. I also say lets support the autistic adults who are now speaking for themselves. They are people, who deserve to be listened to. Their perspective is important and if we let our defenses down we may be able to learn from them.

Saturday, March 21, 2009

Mini Conference in Concord

I had the pleasure of speaking in my hometown of Concord CA. The group I spoke to were all parents and it was such fun. The only problem (as usual) is we didn't have enough time to talk together and swap ideas. I spoke about Fun Sensory Activities based on my book.

Afterwards I had a table set up and sold some of our products. I had no helper because the Hubbo hurt his back. So it was a little hectic, but over all everything went fine. Our two big sellers today were....

The CLAW

The Moody Face, which in my HMO is an awesome stress ball w/ Koosh style hair.

I demoed one of my all time favorite sensory products Insta-Snow aka Suddenly Snow

Afterwards I came home and found out G had a 102.7F fever. Poor guy he was so miserable. I wanted to go to church tonight, but we stayed home and took care of G instead. I hope I can catch a service tomorrow, its been awhile since I've been able to go.