What follows is a guest post from my husband, Richard Long…
After Ariane’s post What’s Wrong With Autism Speaks yesterday, I thought I’d throw my three cents in here. I didn’t know ANYTHING about autism when our daughter Emma was first diagnosed–except that it was BAD, very BAD and that I should be terrified. My wife went out and read most of the books written about autism at the time, mostly written by parents of autistic children documenting their torturous journey, many about the miracle cure they found that “cured” their child.
Like most guys, I Googled my ass off to try and bottom line the situation. And the news was BAD. My child was probably incapable of feeling empathy, of understanding sarcasm, of connecting with other people. Wow. Since Emma was making very little eye contact at the time and was not interested in cuddling or hugging, I thought this all had to be true. Poor Emma. Poor Ariane. Poor me.
I was told life would be difficult. Meltdowns, speech and language processing issues, OCD symptoms, toilet training. I watched horrifying videos like the ones made my Autism Speaks, (I won’t post links here, but they are on the other posts I linked to earlier if you want to get the crap scared out of yourself as well). I was told that a cure may be possible if we ponied up enough $ to Autism Speaks or TACA, so I opened my wallet. I was told about other miracle cures from casein-free, gluten-free diets, hyperbaric chambers, even stem cell therapy! We actually tried them all. We were so very desperate to “save” our daughter.
Then a true miracle happened. Ariane discovered the blogs of adult autistics who were telling a very different story. They DIDN’T want to be “cured.” Autism was part of who they were, as integral as any other component of their personalities. We were told that there were many advantages of autism: heightened senses, high intelligence, great analytic capabilities. I discovered all the famous inventors who were probably autistic.
Most importantly, we learned that what you see isn’t necessarily what you get.
We thought our daughter couldn’t understand what we were saying. Why? Because A) she didn’t react like she was listening B) she didn’t comment on what we were saying C) she never spoke about things like that herself and D) she didn’t seem capable of very much speech at all. But now that we have found new communication systems, it turns out Emma understands EVERYTHING we are saying and has AMAZING things to say about her world. She is HIGHLY intelligent (I suspect she is more intelligent than me). Her sense of humor is incredibly sophisticated. She thinks about some things we never considered at all and sees things in such a creative, unique way.
Live and learn. It took us SEVEN YEARS to realize these things. During that time, we really did think of our lives as tragic. And now I can see how much better all our lives would have been if we had received the right information about autism from the very start. Information that came directly from autistic people, rather than people who claimed to “Speak for Autism”. Information from the parents of autistic children who had also discovered the truth about autism from adult autistics. Parents who weren’t looking for a cure, but instead trying to help their children communicate more effectively and deal with the other issues that make life difficult.
It’s a brave new world for us. Thank god. “Better late than never” I keep repeating to myself. But better yet, my hope is that all children who are born autistic are lucky enough to have people around them who actually understand what this means, that don’t look at this as tragedy, who are ready to help in the best ways possible because they have truly useful information available to them.
And I have never seen any useful information come from Autism Speaks. Then again, if they had said something useful recently, I wouldn’t know because I stopped listening to a group that never speaks with the voice of actual autistic people.
Speaking of which, yesterday Emma had another writing session, which Ariane will post in full on her blog tomorrow. It is mind-blowing so don’t miss it. Here’s a preview: In the session before last, Emma was taught about an inventor of oil pumps for train steam engines. At the end of that session the teacher asked Emma to think about what she would want to invent. So yesterday the teacher asks her what would be a really great thing to invent. Emma’s response:
“Let me tell you that it is not a train engine.”
What is it then?
“It is more from the future. It is a spaceship.”
I can’t wait to show her my UFO videos tonight.
Summer 2008 ~ Richard, Em and Ariane
Emma's Hope Book 