The White Flag?
June 13, 2008 by Kristina Chew, PhD
Filed under Health
Shortly after the Good Morning America segment on neurodiversity aired on Tuesday, I was asked to do an interview with CFRB in Canada, on the Leslie Roberts show. It was live and lasted for only about five minutes. Mr. Roberts focused on the notion of “curing” autism: Who wouldn’t want this? Why not support research into the causes of autism?
I talked more about acceptance and hope and education—about how it’s not about finding some magic pill, but that, through careful, individualized, and compassionate teaching and understanding, autistic children can learn, grow, and thrive.
I was asked if it’s just a matter, then, of waving a white flag. I asked for the question to be repeated: Mr. Roberts said something like, so is it just, surrender, just deal with it?
I said, not exactly; sure you have to deal with the realities in front of you. He repeated the notion of “surrender” and the conversation went on for a bit more, and then ended on the air.
But I kept thinking about that notion of “surrender” and of “jsut deal with it.” I don’t see my life raising my son as a fight or a “war on autism.” Autism is not the enemy, but ignorance and prejudice, and misunderstanding about what autism is (”mercury poisoning,” for instance) need to be addressed. How, how, how do you explain to people that Charlie splashing water in huge waves in the pool is not because he’s trying to annoy people, but because there’s something about splashing around water that does something for his sensory system?
Acceptance isn’t giving up and it’s not passive; it’s about understanding how your child is different, and that you the parent have to learn how your child’s different ways of communicating, thinking, and acting. You the parent are asked to change and, yes, to “deal with it.” But the only flag I’d ever wave is one in support of my boy who tries so hard to do good and do right in a world that’s less than ready for him; in a world that needs to change and make a space for him—autistic, different, and making a difference.
I’m writing from Toronto. I do not listen to CFRB and especially Leslie Roberts.
Roberts likes to overtalk guests and interrupt to steer the dialogue his way. This is his manner and it’s a grating thing for the guests and callers.
That’s probably why he’s on the fifth-ranked radio station in the late morning.
The station, CFRB, once was a very influential station and had high esteem with the listening public. Today, it’s a cadaver filled with talk radio and no-talents to make it happen.
If there were no cell phones and if Toronto’s traffic wasn’t as bad as it is, then CFRB would have to come up with quality programming.
It’s a pity you didn’t get interviewed by the CBC.
Canadian Broadcasting Corporation is streets ahead of all the other stations for asking meaningful questions and getting substantive interviews.
Here’s hoping that the next time will be with a worthy broadcaster and radio station.
Genuine question and genuinely interested in the response.
How would you feel about something like this, or the potential of this, since this is currently demonstrated in a mouse model, with the usual caveats?:
Drug reverses mental retardation caused by genetic disorder
http://tinyurl.com/5avaum
Reversal of learning deficits in a Tsc2+/- mouse model of tuberous sclerosis
Dan Ehninger, Sangyeul Han, Carrie Shilyansky, Yu Zhou, Weidong Li, David J Kwiatkowski, Vijaya Ramesh & Alcino J Silva
Published online: 22 June 2008; | doi:10.1038/nm1788
Curious, with the usual caveats—-what is “mental retardation” in a mouse vs. a human being, and what is “intelligence”—–
I haven’t had a chance to look at the entire paper, but this is their abstract of what they were looking at,
“ABSTRACT
Tuberous sclerosis is a single-gene disorder caused by heterozygous mutations in the TSC1 (9q34) or TSC2 (16p13.3) gene1, 2 and is frequently associated with mental retardation, autism and epilepsy. Even individuals with tuberous sclerosis and a normal intelligence quotient (approximately 50%)3, 4, 5 are commonly affected with specific neuropsychological problems, including long-term and working memory deficits6, 7. Here we report that mice with a heterozygous, inactivating mutation in the Tsc2 gene (Tsc2+/- mice)8 show deficits in learning and memory. Cognitive deficits in Tsc2+/- mice emerged in the absence of neuropathology and seizures, demonstrating that other disease mechanisms are involved5, 9, 10, 11. We show that hyperactive hippocampal mammalian target of rapamycin (mTOR) signaling led to abnormal long-term potentiation in the CA1 region of the hippocampus and consequently to deficits in hippocampal-dependent learning. These deficits included impairments in two spatial learning tasks and in contextual discrimination. Notably, we show that a brief treatment with the mTOR inhibitor rapamycin in adult mice rescues not only the synaptic plasticity, but also the behavioral deficits in this animal model of tuberous sclerosis. The results presented here reveal a biological basis for some of the cognitive deficits associated with tuberous sclerosis, and they show that treatment with mTOR antagonists ameliorates cognitive dysfunction in a mouse model of this disorder.”
This point stood out to me, from here:
So would an increase in “intelligence” be a lessening of this “meaningless noise”? This makes me think of Charlie’s propensity to hyperfocus on somethings and struggle to direct his attention to others: He’ll get stuck on the shapes of the letters and then struggle to understand the sounds and phonics.
—thanks for posting the abstract from Nature Medicine
Oooh, curious…
Of course, with mice, it’s hard to say exactly what the changes are (mice aren’t going to get at those subtle details). So that makes it hard to say.
I’d also like to know how they knew it was “exactly the same condition” as typical autism seen in humans. In other words, how much are we looking at a subset of autism or not? Do we know what the outcomes of this group are when provided specific education for autism (ABA is one, though I’m not limiting it to that) versus the rest of the autism population? I can’t say I know enough to say if tuberous sclerosis autism would resemble the autism that myself or Charlie would have.
In my experience, with the “overfocusing/underfocusing” thing, it largely seems that it’s a matter of social communication and isn’t actually all that innate as to the “important details”. Indeed, I see such things missed by non-autistics once the category gets out of the “commonly socially communicated” category (say, take an English speaker learning a foreign language. Until there is more training as to where to focus, the focus is dictated by previous experience with language, not with the meaning).
So… lots of questions, before a more solid opinion.
Cliff