Thanks to my sister Melissa, The Imagineer Podcast is no longer the only podcast in my life. I'm now also listening to Meg Proctor's Two Sides of the Spectrum.
I recently finished listening to episode two.
In this episode, she talks to an autistic autism specialist named Damian Milton, who sounds bit a like Alan Rickman. Or Severus Snape, really. I can't remember if Rickman always sounded like Snape?
Anyway....
Here are some various thoughts I had while, or because of, listening to the podcast.
1. I find comfort in finding some of Milton's autistic traits relatable. Part of my imposter syndrome is hearing someone's particular autistic trait that does NOT match my own experience and then immediately thinking, I'm not autistic!
2. Milton reminded me that I have a strong aversion to tuna fish salad. I'm pretty sure I've forgotten to mention that in my blog.
Milton talked about his aversion to parmesan cheese, which strangely despite my vomit phobia, I don't have that particular aversion in common with him. I actually love parmesan cheese. Though my love for the processed powder stuff has lessened in the last year or so.
Tuna fish salad, though. If I was starving on a deserted island, I might continue starving if the only thing available was that disgusting substance.
I'm sitting here asking myself if I'd eat a bowl of it for a million dollars, and it's actually horrifying for me to even imagine taking a bite.
But I'd probably do it, because I'd feel guilty not doing it.
I'd probably cry, though, while enduring it. And I'd probably end up with PTSD.
Okay. I know it probably sounds bad that I'd let myself starve to death to avoid eating tuna fish salad, but I wouldn't give up a million dollars.
The thing is, with a million dollars...there are other people in the picture. Like charities and family. I would feel guilty that I gave up a chance to get money I could donate. And I think I wouldn't hear the end of it from family. If only Dina ate that tuna fish salad, we would be sitting in first class instead of economy.
Whatever charity I gave the money to....like let's say I gave it to a charity that plants trees, I think every time I'd see a tree, I'd have flashbacks of eating the tuna fish salad, and I would end up hating trees. Or if I gave the money to a charity to help abused children, I'd end up hating all children.
I really hope no one ever offers me a million dollars for eating tuna fish salad.
Just having to smell tuna fish salad or look at it is dreadful to me.
3. Milton talks about being both touch-aversion and touch-seeking. I'm this way. There are certain fabrics I don't like touching and certain variations of that type of fabric I hate touching. I hate the feeling of having dry skin especially on my hands. I don't like wearing pants, tights, or panty house. I don't like certain types of touch from people. I'm very picky about underpants. I hate touching chalk and chalkboards. It's a struggle for me to get to sleep sometimes, because of touch issues.
But I love touching certain things...like wet, squishy, slimy. Though at the same time, I don't like touching those things, because they can ultimately end up causing my hands to feel dry. But as long as there is good hand-washing and lotion nearby.....I love the feel of lotion on my hands.
I wash my hands too often and sometimes too long. Most of that is due to my germ/contamination issues, but I also love the feel of the water and the soap.
I love people playing with my hair and scratching my back.
4. Milton pushes accommodating sensory issues rather than desensitizing. I like that.
I would much prefer that people not order tuna fish salad when I'm at the table rather than push me to try to get used to the smell.
Fortunately, I'm not often in situations where people order tuna fish salad. Tim and Jack very kindly don't make it at the house. They do make chicken salad, which I don't love to see, because of the mayonnaise. But the smell is much less offensive.
Every so often, someone will eat it when I'm around. I don't think they know of my aversion, and I don't mention it. I have vague memories of people eating it near me in the last few years. I don't remember being too horrified by the smell. Maybe the air circulation was good?
I'm feeling guilty in remembering/realizing that maybe I'm not sensitive enough to other people's smell sensitivities. Tim is sensitive to play-doh. I'm not sure I was compassionate enough about that. My sister is sensitive to the smell of seafood. I guess that fish smell? And my brother-in-law has a sensitivity to fenugreek. I probably have not been kind enough towards them regarding their issues.
I recently brought a frozen Indian meal to the lake house. Fortunately, I had grabbed the Saag Paneer which (probably) doesn't have fenugreek. But we have other frozen Indian meals that probably do have fenugreek, and I didn't really have my brother-in-law in mind when I grabbed the less-offensive-to-him meal.
If I want people to be more sensitive to my issues, I definitely need to be more sensitive to theirs.
5. Either Milton or Proctor (maybe both?) talk about autism as a a culture——a social model of autism vs a medical model. I really like this and hope as time goes by that this becomes a bigger and bigger thing.
6. Proctor talks about how she used to use the term peer model but now sees how it is problematic. Peer model is where autistic child spend time with neurotypical children to be inspired by and learn how to act more neurotypical. Proctor's and Milton's message is that autistic people shouldn't be the ones to do all the changing and improving.
I think through the years, autistic people have been pushed to change so they can accommodate allistic (non-autistic) people. It's much more fair if autistic people learn to bend a bit to accommodate allistic people but at the same time allistic people learn to bend a bit to accommodate autistic people.
SO...for every autistic person put into ABA therapy so they can become more neurotypical and/or more functional, a neurotypical person should be put into a conversion therapy that trains them to act more autistic and be more functional when they are among autistics.
7. Milton had a good analogy for the 40 hours of ABA that some children are prescribed. He said it was like an adult admitting they hate math and then being forced to do math for 40 hours a week. This is somewhat similar to the approach I am tempted to take with parents who force their kids to taste something, the dreadful, Just take one bite. That's all you have to do! I want to take something they'd probably find disgusting like a dead cockroach or a handful of maggots and say, Just take one bite. It's not that hard!
Just for the record: I'd much rather be offered a dead cockroach or handful of maggots to eat, for a million dollars, than a bowl of tuna fish salad.
Anyway...
On the subject of pushing autistic people to change..... (or taking a detour from it, actually)
From what I've heard, one of the things autistic people are often forced to do is make eye contact. I'm not sure if I have the eye contact issue. I don't feel great making eye contact, but I felt weirder recently when I tried not making it. I started to wonder if I had been born with an aversion to eye contact but was taught that this is the right thing to do and so it came to the point where not-making-eye contact felt wrong.
I do often feel uncomfortable talking face to face with people. I would rather talk to someone on a walk or while we're both busy doing chores than sit across from someone at a restaurant and have a conversation. BUT if I was sitting across from someone, I'd feel weird looking past them, and if they did that to me, I think I would be thinking, You're not listening to me. OR, at least, I would have thought that in the past. Now I would be more sensitive to people having eye contact issues. Although that sentiment would compete with the idea that when I daydream, I stare off into space. So I might suspect the other person is doing the same.
I guess what I'm thinking is I'm better off in situations where eye contact is not expected. In the past, I would have attributed this to shyness and/or awkwardness. But maybe it's is an autism thing.
I was reading some advice somewhere from autistic people, and they talked about tricks to make it look like you're making eye contact...such as looking at someone's nose or eyebrows. Maybe I'll start trying that. If it makes face to face conversation easier, maybe this points to me having an eye contact issue.
Anyway...I'm glad to have another podcast in my life, and I'm eager to listen to more of it!
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