I’ve been a critic of Autism Speaks (AS) pretty much from the moment I cracked open the thick AS binder I was given at R’s diagnosis. I didn’t immediately know why reading AS’s First 100 Days After Diagnosis Kit left me feeling simultaneously paralyzed, patronized, and sick with dread, but it didn’t take me long to figure it out.
Good people have been working for change behind the scenes at AS for a long time, to no avail. This week’s AS Summit at George Washington University, which yet again fails to include Autistic people (but inexplicably includes the notorious Judge Rotenberg Center as an exhibitor at their resource fair!) and yesterday’s appalling letter from AS founder Suzanne Wright, are the last straw for many people. Even John Elder Robison resigned his AS position today.
If you support AS, you might want to examine the rising tide of criticism they’ve been getting, and consider re-directing your support to a more worthy organization, like The Autistic Self Advocacy Network. It will be interesting to see who else bails from AS after this week…
My DIY Herobrine costume project. Done in time for Halloween! More photos coming soon….
I recently discovered that R has prosopagnosia (face blindness). I didn’t understand just how pronounced it was until he revealed, after a few weeks of questioning, that he does not recognize me by looking at my face. He uses other cues, like hair, glasses, clothing and body shape.
So I said “R, how do you recognize me in the hallway at school when I’m standing there with a bunch of other moms?”
He mentioned my long brown braid, my glasses, my voice…”And this.” (pointing to my bra strap showing)
“You recognize me by my bra strap?”
“Yes. None of the other parents have that. Why is that???”
Question: What should you do when you are Autistic, have a sensory processing disorder, and are overwhelmed by the loud fan during a home energy audit:
A. Get used to it, pal, because you have to learn how to live in the real world.
B. Wear noise-blocking headphones and shriek at the top of your lungs.
C. Leave the house and go someplace quiet until the energy audit is over.
D. Do ‘Listening Therapy’ to desensitize your ears/re-wire your neural pathways.
Correct answers: B and C
The fan was loud even to me, and much more so to R. Wearing earplugs and/or making vocalizations is a strategy many autistic people use to block outside noise or other stimuli that is threatening to overwhelm. I asked R if screaming helped, and he said it did. This is a great example of R doing exactly what he needed to do to be comfortable and avoid a meltdown.
An even better option would be to move away from the offending stimulus, though that isn’t always possible.
Though it continues to be used widely, I’m more than skeptical about the claims “Listening Therapy” makes. See the American Speech-Language-Hearing Association Working Group in Auditory Integration Training recommendation against this therapy. The Occupational Therapist at R’s school recommended it to us last year. It didn’t make any difference that I could tell.
And no. It’s not ok to expect autistic people to suck it up and get used to it. R experiences the world through his senses in a fundamentally different way that has everything to do with neurology and nothing to do with desensitization through repeated exposure or trying harder to hold himself together.
Though the things he is sensitive to change over time (anywhere from days to months to years), he tends to jump from one right to the next. For a while the sound of passing cars was unbearable. Then it was flushing toilets. Then buzzing bees. He either avoided the sounds or covered his ears, and eventually they faded away, only to be replaced by other sounds.
The audiologist at the Children’s Hospital (where we had his hearing tested and had custom earplugs made) explained that while his hearing is very good, he doesn’t hear any better than the average person. The difference is not in the ear itself, but in the way his brain perceives the sound. And though the details of his sensory processing may change from day to day, month to month or year to year, and though his brain will certainly grow and develop and change, his basic neurology, WHO HE IS, is not going to radically change. He will always be autistic, and that is as it should be. His senses are always going to process things differently, and therefore the goal should be for him to learn how to advocate for himself, ask for and receive reasonable accomodation, and know when he needs to remove himself from situations that his brain can’t handle.
R counted all his money and it came to five dollars. He had an idea. He would give his money to people who had no money to buy food. On the way into the library he stopped a man who looked down on his luck – “Excuse me, if you don’t have any money, you might like to have this” – and handed him a quarter.
I explained that there might be a better way to give away money than to go up to people on the street. I told him we could donate money to the homeless shelter. He wasn’t convinced, so he wrote a note and taped it to the garage so passerbys could see it, come up to the door, knock, and get their money…
He turned on all the lights and ceiling fans in the house to signal to passers-by that they could come to the door to get their money. He knew the rule for trick-or-treating was that you only go to houses with the porch light on.
“5.00 of money and you can use that to buy food.”
When no one came to our door to claim the money, we addressed an envelope to the Shelter Association of our county. He signed his note, and after a lot of convincing, he let me put a bill instead of $5 in coins into the envelope.
He wanted to make sure it got to the homeless shelter, so he wrote Homeless Shel across the back of the envelope, and ter on the front when he ran out of room.
A few weeks later, R is still trying to give away his money. He put $10.30 into a wipes container and put it at the end of the driveway. “Take 1.00”
The money was out all afternoon. When he counted at the end of the day, there was $10.31. Did he miscount, or did someone add a penny? I told him that the people in our neighborhood probably don’t need money.
Today his idea was to fill these pouches he made with coins and take them downtown. People are supposed to reach in to get a coin, after which R would write it down. After much discussion, R agreed to give the money to someone who was collecting donations for the Children’s Hospital, and to simply put the money in the bucket without making the person reach into the pouches. We talked about giving freely, with no strings attached.
Wait, I thought autistic people lacked empathy???