Stuart Duncan's meditation on being an autism dad with a suddenly empty nest struck a chord with me. After focusing his life around marriage and kids for a long time, he is suddenly alone for a week and enjoys himself by eating stuff he likes and doing stuff he wants to do. And then a stray comment on Facebook makes him feel guilty about that:
I posted some pictures on Facebook to which one person replied “you’re not supposed to be enjoying this! lol”
And I got to thinking.
She’s right. I’m not supposed to be enjoying this. What I’m supposed to do is feel alone and quiet and maybe even sad. After all, I do miss my boys tremendously right now. My wife too, but more so my boys since we were together so often for the last 5 months… just the 3 of us.
But why? Why do to that to myself just because I’m “supposed to?”
The moral of this story is: don't make jokes like that to autistic people. Those random comments that really just mean "hi" can really mess us up. Staurt was recently diagnosed with Asperger's syndrome, and that should be a flag to friends-- don't tease. In general, and of course there are exceptions, it doesn't work for us.
My domestic partner is in Europe. A decade ago, I would have had trouble accepting how much I enjoy this. The day to day contact I have with him is essential to me, but it's also more than is completely comfortable. Having a break from it feels good. The extent to which I enjoy being alone used to make me feel guilty or selfish. Now it just feels autistic.
Life should be more than a grim slog that we make the best of. In order for it to be, we have to allow ourselves to love what we love and be who we are. That I love being alone does not mean I love the people in my life less than others. It means that my brain works in a way that is different from most other people, so being around them is just difficult for me in ways that relationships as society constructs them do not allow for. Different, not less.
Mark Pollard has been arrested in Pennsylvania for sexual abuse of an autistic man who was trying to help him get home safely:
Pollard was “very intoxicated” at Thunder Rolls bar in Jeannette when the 21-year-old man offered to walk him home on the afternoon of Nov. 18, according to an affidavit of probable cause.
While in the backyard of Pollard’s girlfriend’s Magee Avenue residence, Pollard allegedly sexually assaulted the man and threatened him not to tell anyone, police said.
Pollard is charged with two counts each of involuntary deviate sexual intercourse by forcible compulsion, involuntary deviate sexual intercourse of a person with mental disability, indecent assault by forcible compulsion, indecent assault of a person with a mental disability and single counts of terroristic threats and indecent exposure.
Justin Haacke is a little autistic boy who loves playing football. But his parents have decided that it is becoming too much of a safety risk for him, and, especially since his dad is his coach, I've got to trust that they are probably right in their decision that Justin should not continue to play. But I hope things change for him and that he gets to be like Anthony Starego, kicking real game-winning field goals. For now, this staged touchdown is a sweet ending to the first quarter of Justin's game.
Yesterday ESPN showed this beautifully filmed segment on Anthony Starego, an autistic teenager who recently kicked a game-winning field goal for his high school football team. It's moving to see one of our own given the full "warrior athlete hero" treatment.
"If you want us to include you when we talk about autism,
you have to stop asking so autistic."
(thAutoons book I Love Being My Own Autistic Self
now available for sale.)
Next Thursday, November 29, the House Congressional Oversight Committee is holding a hearing on the federal response to autism. Unfortunately, no autistic people have been called as witnesses. Fortunately, there are things you can do to make this situation better.
1. If you can, please attend the hearing. It is taking place in the Rayburn House Office Building at 2:00 pm. The Autistic Self Advocacy Network is rallying in front of the building at 11:00 am. If you cannot attend in person, the hearing is being streamed live here.
2. Please sign this petition, also from ASAN, which asks that autistic people be included as witnesses.
3. Please submit your own written testimony and contact your Representative in Congress.
You can fax your own testimony to (202)225-2974. Dr. Matthew Carey has created a form that allows you send a fax.
Dr. Carey also suggests some things that you might include:
1) We need focus on improving the quality of life of Autistics
2) While not all Autistics can self-advocate, if we are going to have autism organizations represented, we need to have Autistic-run organizations represented.
3) Autism is a very broad spectrum, all with challenges of some sort. The government’s response needs to be broad (read-larger than it is now) in order to encompass all the needs of these communities.
4) The vaccine-epidemic hypothesis has been very damaging to the autism communities. Please don’t allow this meeting to be a way around the science in order to keep that idea alive.
5) There are faux therapies in common use for autism. Many are harmless. Some are dangerous and based on incredibly poor science. We need to get accurate information out about these practices.
Emily Willingham recently wrote about things that autistic people want from science, which are pretty much the same things many of us think the government should invest it. You might want to look at that article in terms of suggesting priorities.
Thanks to Paula C. Durbin-Westby, who is responding passionately to this situation.