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Thanks very much to everyone for watching the Good Morning America piece on Controversial New Movement: Autistic and Proud—-Activists Say Stop Looking For a Cure and Accept People As They Are, and for everyone who’s commented here—a lot to think about, and then all the commentary on the ABC news story. Some more commentary ’round the blogosphere is at Crimson Thoughts (more on neurodiversity); Stop. Think. Autism on being autistic and proud; Estée Klar-Wolfond on Diane Sawyer’s comment about acceptance as a “beautiful way of justifying heartbreak”; Patricia E. Bauer also on Sawyer’s closing comment; and a few more blogs here, including one by a fellow autism parent in New Brunswick (Canada).
I was fortunate to be asked to be interviewed and got to hear all of Ari Ne’eman’s interview, too. I especially appreciated the respect the crew showed for Charlie’s privacy; while it was not as hot last Monday as it was this week, more than a few of us felt like jumping in that pool with Charlie.
I was very glad that the footage of Charlie in the pool—-his natural element—-was included. He loves to jump in with a big splash and he can swim a powerful stroke. In some of the segment, you can see Charlie with his hands over his ears and his head down: On seeing this, Jim and I realized that, to an outside observer, Charlie might look like the stereotypical autistic child, shut out and withdrawn from the world into himself—-”kidnapped,” if you will, “by autism.”
Throw in a bit of a “neurodiverse” perspective and, as I understand Charlie from having spent most every moment and minute of the past 11 years beside him (plus those 9 months when he was in utero……), Charlie had his hands over his ears for a kind of filtering effect, to screen out all the sounds and sensations around him, from new human voices to the soft splashing of the water to the smell of the air around the pool. He was trying, indeed, to hear better, and figure out what in the world was going on, with me dressed in a nice skirt instead of a swimsuit and a strange man following him around with a camera. Charlie knew very well that something was up, but (as he often does) he aired his responses in his idiosyncratic way, hands over the ears and head down. At the last moment, he climbed up on the diving block, stood still and looked around, and jumped, and swam.
Seeing him swim has always more than raised my spirits. Charlie has plenty of struggles on land, in the classroom, at his desk. I found it jarring to see a shot of Charlie in the pool on Good Morning America while the words “severe autism” were said. When people ask what Charlie’s diagnosis is, I just say “autism”—that is what was written on the report we got back in July 1999 from the Child Development Center at the Minneapolis Children’s Hospital and that has never changed through many more evaluations and IEPs and social service and other forms. Without the years of education, I suspect that Charlie would be “severe,” would possibly not be able to talk, might be in a residential placement.
We had a chance to celebrate Charlie’s educational achievements Tuesday: It was the “moving up day” ceremony for the fifth graders at his school. They had a dance with a DJ and some raucous macarena-ing and chicken dancing planned; the other parents in Charlie’s room and his teacher, and I, agreed that this might not be the best way for our kids to celebrate their accomplishments. Our class mom planned for a little ceremony.
I came early as it was Charlie’s last cello lesson. The music teacher’s room was not air-conditioned and we carried a music stand and the cello back to Charlie’s classroom. With his classmates bouncing on an exercise ball, reaching for the cello strings, and running back and forth as the mothers set up the party, Charlie plucked and bowed and the teacher and I talked about how to teach him to start pressing his left index finger on the strings to play more notes.
Charlie had woken up late (that is, I had woken up late on Tuesday). He had less than 15 minutes to get out of bed, get dressed, get his backpack, meet the bus. We used to half-carry, tug and pull him out of bed but the time for this is passing. Tuesday morning, when I called Charlie to get up and reminded him about the party, he had opened his eyes, pulled himself up, stomped out to get his shoes on, and clomped down the stairs just as the bus was pulling up. “Cake, party,” he had said as he got on the bus and he repeated those words as I put away the cello and Charlie dutifully donned his paper graduation cap.
Charlie’s teachers told me that he had been asking for the party all day and been told he had to wait till “2 o’clock.” It took a bit longer for achievement certificates to be handed out and photos to be taken: Charlie sat quietly beside another student, kept his hat on, and said “no” to bowls of pretzels and cheese puffs. Finally it was time to cut the cake…….let’s just say that a lot of frosting got eaten and I discovered that, like my late Uncle Quonson who Charlie is the spitting image of when he smiles, Charlie likes the corner piece because it has the most frosting.
The gifts for each teacher, therapist, and instructor (aide/paraprofessional) were photo albums with photos of each boy and messages. And Charlie’s teacher had made each boy an album of photos from the year: Halloween, making vegetable soup, Charlie getting piggy-backs from two really tall instructors, reading, computer, playground, Charlie’s birthday, a cello lesson, the five boys in front of their school.
At one point on Good Morning America I said “I don’t feel that I suffer” and I don’t. I’m not suffering because I have an autistic son: My son is starting middle school, but he will be in one classroom with one teacher and several instructors and won’t be learning to navigate the hallways to get to science before the bell rings.
I have my worries: This was the year that Charlie grew taller than me and I won’t ever again be able to scoop him up in my arms and carry him away from the hostile glare of a stranger and to safety in the form of the blue Graco carseat that he loved so much and used to carry into the house and sit in, right by the door. I’m not suffering though I know there are days, times, and moments, when Charlie struggles deeply to express himself and just to be. I’m not suffering because I’m the mother of an autistic son.
More than anything else, there’s so much to be happy in and even to celebrate, love, and gently accept.
Charlie made it to middle school.
Charlie is talking more than ever—as this weekend’s you know you have the answer attests.
Charlie’s doing good and, thanks to him, I am trying to do so, too.
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Well done, Kristina!
I just saw the segment:
http://abcnews.go.com/GMA/OnCall/story?id=5033594&page=1
1427 days ago
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@mayfly:
“I think they don’t want to admit that many of the things they do are directed at curing [or at least palliating aspects of] autism, but they cannot admit it.”
mayfly: Could you please list the precise things you’re talking about (cf. “things they do”); and since you really began your critique with CURE please stick to that, thanks.
“@Cliff. Au contraire, I don’t think the acceptance crowd or at least parents who are members via their autistic children are for doing nothing. I think they don’t want to admit that many of the things they do are directed at curing or at least palliating aspects of autism, but they cannot admit it.”
Ok, fine, but you need to watch the implications of some of the statements, like “Perhaps those who say they are suffering are simply worried over their children’s future.”, because anyone can see that as a backhanded slap. I again mentioned that I think you’re missing the subtleties of autism if your prior list has any indication, because it’s confusing the symptoms and the condition (via the DSM, which really doesn’t define the condition. It describes a surface view of something else, at best). It’s analogous to saying “I want to cure not being intellectual because my endeavors as such make me not athletic” in principle (one can lead to the other, but not inherently so, and for this argument to hold it relies on a stereotype of the condition to make its point, and in the process confuses one larger condition with a subcondition).
“There is also often an expressed snobbery by some members of the crowd. It is not snobbery to say you don’t suffer, it is to look down on others who do.”
I don’t think people look down on those who simply are saying they are suffering. I do think there may be the typical “snobbery” comes in regards to those who have simplistic views of the condition, and who are prejudicial without reason. But I very much think about those who are having a very seriously difficult time with a child who has a different set of needs in a very serious way, and would absolutely do anything to provide for that (and have, at times). Others do, too. I think there is an aspect of the neurodiversity movement that sees that a lot of the stress of raising an autistic child isn’t only in the child but in the surrounding setting, and that the conception of the individuals plays into that heavily. Again, I think you’re confusing just what the neurodiversity movement is really saying about autism, about the nature of the condition versus its subconditions, and with what it is up against inherently.
Cliff
Mayfly, I saw your list on the other comment thread of things people wish for their children. I wish many of those things for all of my children, neurotypical (whatever that is) or autistic, and I don’t consider it reaching for a “cure” to try to help them achieve the things you list, such as having friends, etc. If I had a child who was not autistic or ADHD but who had trouble making friends, I would not consider it a “cure” to try to help that child gain some social skills. What am I “curing”? Everyone has to learn social skills; some people just have a harder time with it than others. It’s part of behavior management that we must learn from birth.
A parent’s job, NT or not: trying to ensure that their children have tools that make them functional on their terms. I realize that with many of the most distressing manifestations of autism, this effort is Herculean, and I speak only for myself here.
I don’t want to “cure” every single behavior related to autism, or in my son’s case, any behavior related to his autism. I don’t want to “cure” TH of the things that make him him, and those things include echolalia, flapping, all manner of odd noises at inopportune times, an unusual and beautiful mind, a loving, humorous, quirky personality, and a unique perspective on the world. I wouldn’t trade these away just so he can socialize with more people or socialize better or to stop unknowing strangers from staring. With self-injurious behaviors–and he’s had some ideation that way from the age of three–I’d want to get him the help he needs for that. But that ideation is just one of a large suite of behaviors related to his autism, and it’s the only one that has ever caused me real stress or concern. Yes, I’d want to do something about that, just as I’d help a child who had any one of the myriad concerning problems that alleged NT children have. That doesn’t mean I’d want them to have a complete brain transplant.
I don’t want a “cure”–were one even legitimately possible–to kidnap my son, to take away the child I’ve known for more than seven years, a happy boy who’s getting the tools he needs–just as any child of mine would–to be as functional as we can help him be.
And the thing is, I probably won’t have to worry about whether or not he has friends or whether people understand him because these “neurodiversity” types are letting the world know that there’s nothing inherently wrong with echolalia or a loud voice or flapping your hands or flicking your fingers or not quite getting each and every social cue. There’s nothing wrong with rocking or stimming–even Bill Gates rocks. We already see the fruits of this recognition where we live, in this school district, because there are so many families like us. People here have an understanding and awareness of autism that precludes any necessity on our part to try to make our children into cookie-cutter products. Which is not possible anyway because NOBODY is NORMAL. We all need to be “cured” of something related to our behaviors. That doesn’t mean we need to replace who we are entirely with something that meets every false standard of “normal.”
@Cliff. Au contraire, I don’t think the acceptance crowd or at least parents who are members via their autistic children are for doing nothing. I think they don’t want to admit that many of the things they do are directed at curing or at least palliating aspects of autism, but they cannot admit it.
There is also often an expressed snobbery by some members of the crowd. It is not snobbery to say you don’t suffer, it is to look down on others who do.
Emily–thank you. Same to you :-).
mayfly, I’m so glad you corrected that. It had me stumped.
Regan, excellent point. I’m becoming your biggest fan.
Perhaps we should be more worried about fostering support systems and more things for the now and present. Perhaps that would reduce some of that day-to-day anxiety and stress.
RAJ did bring up some reasons that biomedical research could give some pointers to preventable causes.
I think the point is not to put all the eggs in one basket or to have wild pendulum swings. There is a substantial investment in looking at biologic and neurologic research which is more focussed on why and what if. The investment in what to do now was somewhere in the neighborhood of 1%.
Whoops! all male lions have! a spur hidden in the tuft
@Mayfly-I think you’re highly misconstruing my point yet again. I am hardly taking away from your difficulties as a parent. I also don’t think that they’re incompatible with acceptance at all. But I also think you’re doing a slippery act of “us-them” dichotomy by painting the acceptance crowd as a “let it be” crowd, because there is a lot of room in between the two.
@RAJ As a genuine question, given the timing of said research and the social factors related, has there been nay distinction here between “autism” itself and “autism-like symptoms” a la Hannah Poling? Looking at the work of Chess and others, I’m inclined to think that distinction might be warranted, as a different psychological condition that presents like autism, as noted in a few other disorders. It’s also slippery when the coexistence of a mentally retarded and an autism diagnosis comes to be, for that could mean a number of likely things. So I’m actually not convinced yet by such “causes”, as per the construction which I could note as highly prejudicial at foundation.
Cliff
@Joseph
Not everything has a purpose. All male lions with normally formed tails and a spur hidden on the tuft. That spur serves no purpose.
We can virtually cure depression in many through pharmacology.
The virtual cure is not available for autism.
There is another huge difference. Unchecked depression very often leads to suicide. So if members of a depressed community start a movement saying we don’t need help, it’s not a given that listening to their demands is the loving thing to do.
@Kristina, I worry about the starving children of the world. I worry about being losing their homes. I worry when I read about an autistic child who has wandered away from home, and I cringe If that child is hurt or killed. However, if my daughter wandered off, my worrying about her safety would far exceed those other worries.
Kristina wrote :
@RAJ, I’m not against any sort of research that is valid and credible; the more questions that can be raised, the better. But I’m not so sure if autism can be prevented.
Your observation is factually incorrect. The only preventions in place have all come from well designed peer reviewed research into the environmental component of autism. It is a success story that continues to go unrecognized.
Rubella autism was identified in the last great rubella pandemic of 1964. The development of an effective rubella vaccine has resulted in prevention of rubella autism and other neurological and physical impairments caused by prenatal infection with the rubella virus.
Thalidomide embryopathy has also been found to be associated with autism in a subgroup. The removal from the marketplace of thalidomide therapy to treat morning sickness has eliminated this cause.
PKU is a metabolic disorder that left untreated has been associated with mental retardation and autism. Newborn screening for PKU in the developed world and immediate placement on a phenylalinine free diet has resulted in prevention.
Autism has also been discovered to be associated with fetal anticonvulsant syndrome and Valproate Acid Syndrome. These medications are still in use but there is important research still underway to identify the treatments that would be as just effective with lower risks for autism and other neurological disorders.
Fetal Alcohol Spectrum Disorders (FASD) is also a risk for autism in a subgroup and is the most preventable cause of autism. Wide scale education on the risk for massive exposure to alcohol in pregnancy will hopefully reduce the incidence of autism associated with the children born to frankly alcoholic mothers.
@Cliff I stated earlier i the post that people suffer for different reasons. I went on to say that I didn’t think I suffered.
Do yo think that perhaps some people may be so distraught over their children’s futures that they may indeed be suffering?
Especially those with without a support network.
I don’t worry over my daughter’s future daily basis. For me, worry to that extent is demobilizing. I know without the support of my spouse, friends, and my faith, I would be overwhelmed by trying to raise a daughter who needs so much more than hugs and acceptance. Perhaps I’m just weak.
One of the nicest things about having a support network is that one buoys other members of the network. If a person is always distraught they are like dementors and can suck the “soul” out of the support group.
Sometimes I raise my wife’s spirits, sometimes she raises mine. Sometimes we help others, sometimes they help us. We feel we are in a great placed and truly blessed.
It is not inconceivable to me that people without such things may be overwhelmed, distraught, and yes suffering. A conditions which for them is substantially rooted in their children’s autism.
@Kristina
@mayfly, you wrote “Our daughter has an unexpected ability to detect tension between her parents and that often lead to breakdowns”—very much so with Charlie, who is completely attuned to emotional stress.
I know I’d worry over any child’s future, regardless of diagnosis—-I worry over the future of my college students when I see their grades and they can’t articulate what it is they wish to do with their lives.
I would say, I don’t suffer because of Charlie, specifically. There’s too much love and joy from him, and in life with him. I’m not suffering from being Charlie’s mother, which is not to say I don’t have my own painful and difficult moments….because of my own shortcomings, not because of Charlie’s.
@RAJ, I’m not against any sort of research that is valid and credible; the more questions that can be raised, the better. But I’m not so sure if autism can be prevented.