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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.
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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
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
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.”
Curious, with the usual caveats—-what is “mental retardation” in a mouse vs. a human being, and what is “intelligence”—–
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
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.
“@Cliff. Just as there isn’t a magic pill my daughter can take, there isn’t currently some magical teaching method by which she can learn. Her problems stem not from improper teaching methods, but from her autism. The only teaching method is patience, love, and to keep trying to teach her, and to fight the feelings of futility.”
Yes, the task is difficult. But in so far as a “magic teaching method” (read: a more intense version of any kind of learning whatsoever), it is far and away well possible for her to continue to learn certain skills and abilities. As you basically noted. But, yes, it is a more difficult task, to be sure.
Cliff
On the pool comment, my recent experience was quite different. After people realized Tristan wasn’t drowning (he was flailing and bouncing off the floor of the pool and there were a lot of mom’s going on ‘autopilot save the kid’) they quickly switched to showing their toddlers – ‘see he’s holding his breath and putting his head under water, see, he’s having fun, you can too!’
@mayfly, I suspect (this is my hunch) that Charlie would like to be more included socially. But the extent of his communication disability and his anxiety (which can manifest as difficult behaviors) prevent doing this as much as we’d like. So what tends to happen in group situations is that he tries as hard as he can for a short period of time; if it’s in his school class, things are fine. But if he’s in a situation with strangers (as in the airport last Friday morning), he quickly gets extremely anxious, extremely.
@longtime. Yes she has a one-on-one aide. As you can imagine she’s in a special class. The purpose of the class is to teach her life skills.
She loves being in the water, paddling supported by her armbands. She likes sitting on the arm of the chair I’m in while I read “Good Night Moon.”
She likes me to sing to her. She likes me, someone with two left feet and absolutely no sense of rhythm to “dance” to the Wiggles tapes.
Just to complete the picture: My daughter had language at one time, getting as far a simple requests. She could name nearly everything around the house, and at outside as well. She was very good at generalization, recognized letters of the alphabet. She delighted in revealing “Got the ‘Q’, as she sat in my lap as I played scrabble with her mother.
She never developed any social language, no Hi’s or by’s, never called us Mommy and Daddy. She never babbled, never had any separation anxiety, if we left her with her grandparents whom she saw perhaps twice a year. She had a great many autistic traits, that she probably could have been diagnosed long before her first birthday instead of close to her third. The regression, perseverations, and withdrawal from the world happened fairly rapidly right around her second birthday. I don’t think anything happened to her post partum, but that many aspects of autism do not manifest until the child is a couple of years old.
What therapies/educational method were dropped when people spoke of a cure?
@Cliff. Just as there isn’t a magic pill my daughter can take, there isn’t currently some magical teaching method by which she can learn. Her problems stem not from improper teaching methods, but from her autism. The only teaching method is patience, love, and to keep trying to teach her, and to fight the feelings of futility.
@TomsMom. I understand your situation. My daughter doesn’t care about her lack of social integration. I can empathize with your son’s pain of trying to be social and being rejected as he doesn’t understand the rules which are so often situational.
@mayfly (and by extension others here)
“I don’t think people with Asperger’s are burdened.” Please think again: Tom may be verbal but when he talks he is not communicating. He does not understand why others do not understand him–nor can he fathom them. I can see his pain and bewilderment every single day, and it IS a burden to him that we can only “deal with” as we can.
That being said, I have hopes that the various interventions, including those we use at home that are probably similar to those employed by any parents with children on the spectrum, will have positive results. Because he is high-functioning he may be able to do more and “fit in” better in society (eventually, when he learns to modify his behavior to suit the rest of the world) but it won’t be easy, it won’t be natural, and he will struggle: as do we all.
“Ettina, it is not society that prevents her from functioning it is her autism. With a couple of exceptions society has treated my daughter with great kindness.
Is her present inability to communicate attributable to society. No, it is her autism. Is her developmental age attributable to society, no it is her autism. Is it society which will be responsible for her probable need for care to accomplish even the simplest tasks, it is her autism.
So far society hasn’t failed her. Perhaps I have failed her. Perhaps people believe low-functioning autism to be a burden because it actually is one”
Given that education is directly attributable to function, and that education is given by society (ideally in the form of a reasonable fashion open to all), it’s not so simply to just say “isn’t culpable at all”. It is structured to work for individuals that, without that structure, wouldn’t “function” as you imply. I am not saying there aren’t difficulties inherent with teaching an autistic mindset socially-inherited tasks (which almost is “everything”, actually), but it isn’t an absolute nor vindicated for that responsibility.
Cliff
@mayfly
Thanks for answering my questions along the way in your detailed reply; I appreciate it and I understand better now in regards your particular situation. I wish I could explain mine in detail, but I can’t. Suffice to say, though, I saw a lot of good treatment (ie therapy)/education options cast aside when “cure” became the order of the day and it had everything to do with that elusive, medicinal, magic-cure-pill which would reanimate the “soulless, lacking-in-personhood” individual. This was very much what was going on in my locale and precisely what “cure” meant. Your daughter sounds lovely. If I may ask: What are her favorite activities? Also, does she have a 1:1 working with her?
Ettina, it is not society that prevents her from functioning it is her autism. With a couple of exceptions society has treated my daughter with great kindness.
Is her present inability to communicate attributable to society. No, it is her autism. Is her developmental age attributable to society, no it is her autism. Is it society which will be responsible for her probable need for care to accomplish even the simplest tasks, it is her autism.
So far society hasn’t failed her. Perhaps I have failed her. Perhaps people believe low-functioning autism to be a burden because it actually is one
@Kristina, She’s a few days older.
@mayfly, for some reason I thought your daughter was much younger—so she and Charlie are the same age.
@Ettina, I truly think that if Charlie could talk as well as any child of his age, what he would say would not be “normal” or “typical,” but vintage Charlie of the sort I know well from having known him all these years.
@longtime she just turned 11. We have seen great advances in behavior and general awareness of things going on around her.
She has not developed a good method of communication. She’ll bring us a glass if she’s thirsty that sort of thing. We are now trying a yes/no box with her. Her selections are random. She gained knowledge of the uses of a handful of items, but doesn’t know their names. She follows some simple imperatives, but doesn’t know the objects of the command. Please pick up the book! is just as likely to result in bringing you a sneaker.
She takes very little ,if any interest in others.
She is a very happy child, which was not always the case. That is by far the biggest change we’ve seen. That change may be somewhat pharmacologically based, but I think it has more to do with her maturing.
I don’t know if she could find her away home from a block away. She does recognize the house, so perhaps. She has no concept of the dangers things such as cars can pose.
She is not incapable of learning. She learns best things which are incorporated into her routine. Though trying to introduce new things into that routine is often met with failure.
We know many families with special needs kids are the church we attend has great programs for them. We these kids soon becoming able to d things are child cannot. We are happy for those children and their parents, but also wish our child would gain more abilities. I have the same bittersweet feeling reading about Charlie’s accomplishments. We are not asking for a trophy child. We would like her to develop enough to be able to communicate should she be abused. We would like her to have more life skills. We would like her to have friends. Autism is the impediment to her acquiring these things. In some cases that impediment is partially overcome in others we have not been able to make inroads.
“Are you saying that if one could relieve an autistic person of all their symptoms, they would still be autistic?”
Two things:
Firstly, some higher functioning autistics can, like many gay people, hide their difference very convincingly. This is not a pleasant life to lead.
Secondly, autism is so often seen as a single ‘snapshot’ that defines the child’s development, as if a nonverbal stimming 3 year old will always act just like they do at 3 years old. That’s not true for any child, regardless of disability. And the line between autism and other disabilities and normality is not a clear one. Children grow and change, and for some, they cross diagnostic lines. This doesn’t mean they’ve fundamentally changed, just that our diagnoses aren’t taking into account the dimension of time.
Is a child who grew from a nonverbal, stimming 3 year old into a sociable, hyperactive, talkative 7 year old really a different child, just because their diagnosis has changed from autism to ADHD? No. That’s just their developmental path. That child is as much the same person they were as any 7 year old is the same person they were at 3. But people don’t tend to see that.
Autism is defined by a set of behaviors, but those behaviors aren’t just stand-alone things. They are caused by underlying traits – cognitive style, motor planning, sensory processing, emotional pattern, etc. The same trait can cause different behaviors in different circumstances, and kids can also learn to change how they act to a certain degree. It’s just like being gay isn’t having sex with someone of the same gender, but a long-term pattern of feeling sexual attraction to the same gender, combined with varying other differences such as different mannerisms.
As for whether LFAs are burdened – yes, I think they are. But not by autism. They are burdened by being in a society designed for people so different from them that they cannot function. And we don’t know what these people would look like in a different society, better designed for people like them. We don’t know what is a direct result of the type of brains that these people have, and what is because they don’t understand and are not understood. But if you work with your daughter and her autism, rather than fighting it, you can begin to discover that. And by her autism, I’m not meaning the specific behaviors listed in the DSM, but the ways in which her thinking, her perception, her feelings, her movement style, etc differ from normal.