Obsession, addiction and the autism road trip
May 3, 2006 by Kristina Chew, PhD
Filed under Health
The road trip is an image I often use to describe our life raising and learning from Charlie. Jim and I have long thought of our family as three travelers on a winding–and sometimes ill-paved and potholed–road in Autismland. All too often, we have gotten “stuck” at some bend in the road when Charlie has gotten “stuck on”–obsessed–with something, whether having to eat sushi every day or (when he was much younger) with a red spot of paint on a play structure.
When does an obsession–eating sushi (so that a child says “sushi” a hundred-plus times even after he has eaten it) or looking at a red spot of paint (so that a child screams and kicks and clings to the play structure when his parents try to drag him away)–become an addiction?
The Road Trip: Life with Autism, whose author is autism mother Gloria Pearson-Vasey, is about the long journey of life with autism, and about how an autistic person can get “stuck” on something–sushi or paint spots; cigarette butts or paint solvent.
Actually, it is inaccurate to say that The Road Trip: Life with Autism is “by” Ms. Pearson-Vasey. Her autistic son, Kevin, is its co-author. Kevin is non-verbal and communicates by typing on a Dynavox computer.
The Road Trip: Life with Autism documents a trip that Ms. Pearson-Vasey, her husband, and Kevin take from Ontario to Nova Scotia in 1992. The book also tells the story of a longer journey that their family has been on, from Kevin’s diagnosis at the age of two, his bouncing from school to school and institution to institution (including residential placement when he was 12 years old), his eating of cigarette butts and sniffing of paint solvent, his learning to type on the computer, his parents’ struggles to obtain services for him as a child and as an adult, and their advocacy for individuals with disabilities in the community on many issues, including sexual development.
Ms. Pearson-Vasey is a secular Franciscan and her spiritual beliefs–and Kevin’s too–inform the narrative. As a fellow (traveler) mother, I found The Road Trip: Life with Autism to be representative of a feeling so many autism parents feel, a deep joy and love intermixed with sorrow (I have referred to this as “ice-pleasure“). It is not easy to read about Kevin eating cigarette butts found on the street, or about how he had to be prevented from sniffing the fumes from the gas tanks of their cars.
It is sustaining to read Kevin’s own words.
“Why do you run ahead of us when we stop to see things?” I ask Kevin this at a bog boardwalk stop.
“I like to be independent. After all, I am 23 years old.”
“What kind of souvenir do you want?”
“A ship.”
………..
Returning to our motel in the evening, I ask in dismay, “Why did you eat a butt?”
“It looked very tempting but it tasted terrible and I’m sorry I ate it. It wasn’t worth it.” (p. 70)
And that is worth the price of the journey, many times over.
Well, I definitely think that activities like eating cigarette butts and sniffing solvent and exhaust, etc., fall under the category of “dangerous and health-damaging”. I would never, ever suggest that anyone be permitted to keep doing these things (plenty of NT kids sniff paint, after all, and I don’t advocate this either). If something is dangerous, it’s dangerous, whether one is autistic or not. I would draw a huge distinction between someone’s getting “stuck” on something harmless (numbers, letters, dinosaurs) and getting “stuck” on something that could hurt or kill someone.
I really don’t think there’s any question that kids shouldn’t be allowed to eat garbage or inhale toxic fumes.
One can (and should) most certainly divert kids away from things that are downright dangerous.
It can be more difficult when the “danger” is not specifically related to physical health and safety, but what I commonly see referred to as “limiting opportunities for learning and growth”. This second category of “danger” is far more subjective. All kids need to be taught things like how to delay gratification, how to leave things for later, how to deal with the loss of certain things. But these things can be taught without the intention of attempting to “re-wire” the autistic brain so that it loses its tendency toward focus. Focusing isn’t a bad thing. People can focus inadvertently on things which end up being destructive, but it is the destructive activities themselves that ought to be addressed, not the overall tendency toward focus.
It’s an important distinction you make, Zilari. Of course there’s nothing in and of itself wrong with Charlie wanting sushi every night for dinner–then there’s the conundrum when he’s told he’s not having it one day and he head-bangs.
I guess as a parent one finds oneself in an often-awkward position, of having to make certain pre-emptive decisions.
Pearson-Vasey’s and Vasey’s book also suggests how to use an ability to focus to teach a person something—such as how to type and then to communicate, and to author a book.
I think all kids need to learn to deal with disappointment, because obviously nobody can have whatever they want, whenever they want it, all the time. Teaching Charlie that sometimes dinner (or lunch, or breakfast) will be varied is certainly good. Sometimes I worry that when I talk about “not trying to remove a tendency to focus” this is going to be perceived as my suggesting that childrens’ every whim be indulged. This is absolutely not the case.
And I also understand the dilemma of whether to pre-emptively discourage certain things so that something like physical harm does NOT result. I would just caution anyone (I’m not specifically addressing you here, but I know you’re not the only person who reads this blog) against making immediate associations between, “My child really likes this!” and “Well, I’d better take it away because it’s going to turn into a problem!”
What kind of a life could a person live, if every time they found joy in something, someone came along and took it away? (again, assuming that the things the person is finding joy in aren’t poisonous or otherwise hazardous)
The point I am trying to make regarding “autistic focus” is simply that this focus is an integral part of the neurology — not a “bad habit” or a “good habit”, but an aspect of brainwiring that is going to be there regardless of outward manifestations.
I’ll try to explain with an analogy. Let’s say we have a typically-developing child. This child has some issues with talking and socializing too much during class, and this is discovered to be interfering with her learning and distracting the other students. The proper thing to do here is to teach this child to save her socialization for the playground and the lunch periods. It is NOT to tell her she can never talk, ever, or apply an intensive program to discourage her from talking at any time because this might lead later to problems. Talking is an inherent part of how she learns and communicates and interacts with the world and though it is always a risk (how many people have been punched, stabbed, or shot over saying the wrong thing?), the solution is not to attempt to re-wire her so she stops talking, but to help teach her about appropriate times and places for talking.
Since autistic people are almost invariably going to fixate on something, helping us learn WHEN it’s okay to fixate, and to structure our time to allow for some of this (again, as long as it isn’t on dangerous or poisonous things), seems like a realistic and healthy goal.
And it doesn’t sound as if you’re preventing Charlie access to things that give him joy. I’ve read plenty of entries about sushi and Goodnight Moon, after all.
Charlie has been struggling with his timing—his autistic focus (if I am using that phrase appropriately) seems to get turned on at moments that make it harder to maintain the focus. Lately we have been working a lot on teaching him to “delay gratification,” to wait and then he can have it. And it seems to be working.
To the sushi and the photos, add his precious photo collection!