Recently I had a chance to meet Roy Richard Grinker, author of "Unstrange Minds-Remapping the World of Autism" at a book store. He's been on a midwest and mid-southern tour of cities. There was only a small audience, so I got to talk to Mr. Grinker a bit.
I had had a hard day at work, rushed home to get in some play time with the kids, then went back to the book signing. After the book signing I went home and had a beer while I caught up on some e-mail. As per our usual routine, I got Buddy Boy up to go to the bathroom a little after 10:00 pm (if we do this he usually stays dry thru the night). As I bent down to tuck him in afterwards, Buddy Boy says "Don't drink beer, Dad. It makes your breath smell bad."
I've been thinking about smell lately and how important it is to Buddy Boy, as well as a lot of other autistics. Smell is probably the most ignored of all our senses. Most of us don't pay much attention to it when we have it, but miss it terribly when it's gone. It helps us make scents of the world. Smells can warn us of danger, help us taste our food, increase our level of sexual arousal, and trigger memories of other times and places. The first time I entered an operating room (other than as a patient) I caught a scent of something (cleaning agent, the smell of instruments coming out of the sterilizer, trace levels of anesthetic gasses?) that triggered a flashback to when I had my tonsils out as a 5 year old. It was a vivid memory.
Buddy Boy has always had a keen sense of smell, and unlike most NT people, actively engages his sense of olfaction as he interacts with the world. He smells the pages of books, food choices are heavily influenced by their odor, and he smells people when he meets them. He has learned that it's not considered polite to tell people that they smell bad, but doesn't think this rule applies to family members (which is OK with me, as long as he's not going around telling everyone else in the world they smell bad). I'm hoping that maybe his increased sense of smell might help him in the workplace some day.
So anyway, back to the book signing (you knew I wouldn't just let that go).
I haven't had a chance to read Mr. Grinker's book yet, so my comments are just about meeting him as a person and having a short conversation with him. Roy Richard is a very engaging man. He's the type of person I would love to have at a party, or to sit down over a pot of coffee or tea with. He speaks Korean and Swahili, and has traveled around the world doing epidemiological research on autism. But he's also a down to earth kind of guy. Someone very much like the rest of us, just trying to do the best for our families every day. He said that he sometimes still gets nervous going into IEP meetings, wondering whether the team will focus too much on the negative aspects of his daughter's performance rather than the positive ones.
Grinker definitely falls on the "acceptance" rather than "cure" side, and in response to an audience question recommended the blogs of Autism Diva (he likes her attitude and opinions), Kevin Leitch's Left Brain/Right Brain (a very well thought out and knowledgeable site), and Kristina Chew's AutismVox (where 10 minutes after any news relating to autism is released, it's up on her blog).
I don't pay nearly as much attention to my sense of smell as Buddy Boy, but Roy Richard Grinker passed my sniff test when I met him. I look forward to reading his book.
Joe forgot to weigh himself today (purposely?)
6 comments:
In a feeble attempt to respond to both aspects of your post, a friend told me how her PDD-NOS son goes around the house sniffing books (I don't think she's read Unstrange Minds yet but she did loan me another one, Letters to Sam). MothersVox at Autism's Edges has commented on her daughter's very keen sense of smell a few times. Charlie's olfactory faculty is definitely very keen, too, though I have noticed that he is not deterred by smells many of us would consider "bad."
Thank you for the mention---pleased to find oneself (one's "blog-self"?) in such good company.
It's always fascinating to read things like this, because I thought everyone smelled books! It just seems like the natural thing to do. Different books have different smells -- there's new-book/bookstore smell which is kind of sharp and clean, there's library-book smell which is sweet and soft and complex, and there's garage-book smell which is musty and grey and comforting. Another thing I always smell is the inserts in CDs (and formerly, cassette tapes). This is a very complex and unique smell, and I think it might have something to do with the ink they use.
I have always been intrigued by my son's lack of response to smell. I have never ever been able to get him to acknowledge or label a smell. I have asked doctors and his OT about it and they all just blow it off.
I think they just figure that he can't verbalize it but that it is there. But if that was the case, I think he would show some reaction especially in offending situations.
I have tried time and time again to probe him to see if it is there. I can not get any reaction at all.
He doesn't really have eating issues so I don't think that his taste sensations are out of wack. He does have food preferences so I know that all food does not taste the "same" to him.
Even if he was so incredibly sensitive that he learned to "disengage" from smells, don't you think I see some clues?
Anyway, just wanted to share our smell obstacles! In the grand scheme of things I suppose I prefer my child not knowing that I haven't bathed all day!
Dr. Grinker passed Autism Diva's sniff test. She was a little blunt with him when he first contacted her to see if he could advertise his book on her blog. She said ,"No advertising on the Diva blog, sir" or words to that effect, because the Diva blog is a non-profit affair.
He's a very nice man. I think his wife must be very nice, too. Autism Diva even gave him some pretty blunt criticism of a few parts of his book, but she also gave him loads of thanks and praise for the rest of the book.
Dr. Grinker doesn't go around bragging about it, but he goes out of his way to help ASD students at his University. I think he said other University staff tell the ASD students about his connection to autism and the students go see if he can help them figure out some problem or other. It's amazing how a small thing can become a huge obstacle for ASD people, I know I had a really hard time with managing some of the red-tape stuff getting into the University and then dealing with dumb stuff while I was there.
Swahili and Korean, how cool is that?
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about smell, there is some research that showed that Asperger's young men had a harder time identifying smells. But I know one young man dx'd with AS who couldn't eat with his family because the dining table was by the kitchen and if they had cooked something strong smelling (like curry) he couldn't stand to be in the area, even if he wasn't going to eat the curry.
My sense of smell tends toward being normal, and worse now that I have allergies most of the year.
Re: smell asscociated with feeling, scents really do something base to people. After my aunt passed away several years ago, we had to clear out her house. She had a thermometer etching business in her house until the 80's, and when I opened the cellar door the distinct odor hit me (I lived next door and I had spent a lot of time at her house). It is difficult to explain the feeling except 'base': emotion but not QUITE memory...
Bill
Smell wasn't an issue for Brendan until his adenoids were removed when he was almost 5 (they were causing serious sleep apnea & loads more problems). Before they were removed he'd eat almost anything, including wasabi (!). Afterward things really changed. He has developed more & more sensitivites to smell & foods as he's gotten older (he's nearly 11 now). He does sniff things (but I'm with annec on this one- I do, too :) & certain smells, such as meat cooking, are absolutely intolerable to him. The meat smell reminds him that animals were killed & that gives him physical pain (he describes it as being like a knife jabbing him). Certain perfumes are also related to OCD triggers, so we never know, when we're out in public, how he'll cope.
I'm glad to hear that Roy Grinker passed the sniff test :) I have enjoyed the book very much (with some reservations as to his repeating north american culturally-accepted views of autism) & am glad that he's as nice in person as he seems in the book.
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