How About Not ‘Curing’ Us, Some Autistics Are Pleading
December 20, 2004
By AMY HARMON
BOICEVILLE, N.Y. - Jack Thomas, a 10th grader at a school for autistic teenagers and an expert on the nation’s roadways, tore himself away from his satellite map one recent recess period to critique a television program about the search for a cure for autism.
“We don’t have a disease,” said Jack, echoing the opinion of the other 15 boys at the experimental Aspie school here in the Catskills. “So we can’t be ‘cured.’ This is just the way we are.”
From behind his GameBoy, Justin Mulvaney, another 10th grader, objected to the program’s description of people “suffering” from Asperger’s syndrome, the form of autism he has.
“People don’t suffer from Asperger’s,” Justin said. “They suffer because they’re depressed from being left out and beat up all the time.”
That, at least, was what happened to these students at mainstream schools before they found refuge here.
But unlike many programs for autistics, this school’s program does not try to expunge the odd social behaviors that often make life so difficult for them. Its unconventional aim is to teach students that it is O.K. to “act autistic” and also how to get by in a world where it is not.
Trained in self-advocacy, students proudly recite the positive traits autism can confer, like the ability to develop uncanny expertise in an area of interest. This year’s class includes specialists on supervolcanoes and medieval weaponry.
“Look at Jack,” Justin pointed out. “He doesn’t even need a map. He’s like a living map.”
The new program, whose name stands for Autistic Strength, Purpose and Independence in Education - and whose acronym is a short form of Asperger’s - is rooted in a view of autism as an alternative form of brain wiring, with its own benefits and drawbacks, rather than a devastating disorder in need of curing.
It is a view supported by an increasingly vocal group of adult autistics, including some who cannot use speech to communicate and have been institutionalized because of their condition. But it is causing consternation among many parents whose greatest hope is to avoid that very future for their children. Many believe that intensive behavioral therapy offers the only rescue from the task of caring for unpredictable, sometimes aggressive children, whose condition can take a toll on the entire family.
The autistic activists say they want help, too, but would be far better off learning to use their autistic strengths to cope with their autistic impairments rather than pretending that either can be removed. Some autistic tics, like repetitive rocking and violent outbursts, they say, could be modulated more easily if an effort were made to understand their underlying message, rather than trying to train them away. Other traits, like difficulty with eye contact, with grasping humor or with breaking from routines, might not require such huge corrective efforts on their part if people were simply more tolerant.
Spurred by an elevated national focus on finding a cure for autism at a time when more Americans are receiving autism diagnoses than ever before - about one in 200 - a growing number of autistics are staging what they say amounts to an ad hoc human rights movement. They sell Autistic Liberation Front buttons and circulate petitions on Web sites like neurodiversity.com to “defend the dignity of autistic citizens.” The Autistic Advocacy e-mail list, one of dozens that connect like-minded autistics, has attracted nearly 400 members since it started last year.
“We need acceptance about who we are and the way we are,” said Joe Mele, 36, who staged a protest at Jones Beach, on Long Island, while 10,000 people marched to raise money for autism research recently. “That means you have to get out of the cure mind-set.”
A neurological condition that can render standard forms of communication like tone of voice, facial expression and even spoken language unnatural and difficult to master, autism has traditionally been seen as a shell from which a normal child might one day emerge. But some advocates contend that autism is an integral part of their identities, much more like a skin than a shell, and not one they care to shed.
The effort to cure autism, they say, is not like curing cancer, but like the efforts of a previous age to cure left-handedness. Some worry that in addition to troublesome interventions, the ultimate cure will be a genetic test to prevent autistic children from being born.
That would be a loss, they say, not just for social tolerance but because autistics, with their obsessive attention to detail and eccentric perspective, can provide valuable insight and innovation. The neurologist Oliver Sacks, for instance, contends that Henry Cavendish, the 18th-century chemist who discovered hydrogen, was most likely autistic.
“What they’re saying is their goal is to create a world that has no people like us in it,” said Jim Sinclair, who did not speak until he was 12 and whose 1993 essay “Don’t Mourn for Us” serves as a touchstone for a fledgling movement.
At this year’s “Autreat,” an annual spring gathering of autistics, attendees compared themselves to gay rights activists, or the deaf who prefer sign language over surgery that might allow them to hear. Some discussed plans to be more openly autistic in public, rather than take the usual elaborate measures to fit in. Others vowed to create more autistic-friendly events and spaces.
Autreat participants, for instance, can wear color-coded badges that indicate whether they are willing to be approached for conversation. Common autistic mannerisms, like exceedingly literal conversation and hand-flapping, are to be expected. Common sources of autistic irritation, like casual hugs and fluorescent lighting, are not.
For many parents, however, the autistic self-advocacy movement often sounds like a threat to the brighter future they envision for their children. In recent months, the long-simmering argument has erupted into an online brawl over the most humane way to handle an often crippling
condition.
On e-mail lists frequented by autistics, some parents are derided as “curebies” and portrayed as slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating. Parents argue that their antagonists are showing a typical
autistic lack of empathy by suggesting that they should not try to help their children. It is only those whose diagnosis describes them as “high functioning” or having Asperger’s syndrome, they say, who are opposed to a cure.
“If those who raise their opposition to the so-called oppression of the autistic would simply substitute their usage of ‘autism or autistic’ with ‘Asperger’s,’ their arguments might make some sense,” Lenny Schafer, publisher of the widely circulated Schafer Autism Report, wrote in a recent e-mail message. “But I intend to cure, fix, repair, change over etc. my son and others like him of his profound and typical disabling autism into something better. Let us regain our common sense.”
But the autistic activists say it is not so easy to distinguish between high and low functioning, and their ranks include both.
In an effort to refute parental skeptics, the three owners of autistics.org, a major Web hub of autistic advocacy, issued a statement listing their various impairments. None of them are fully toilet-trained, one of them cannot speak, and they have all injured themselves on multiple occasions, they wrote: “We flap, finger-flick, rock, twist, rub, clap, bounce, squeal, hum, scream, hiss and tic.”
The touchiest area of dispute is over Applied Behavior Analysis, or A.B.A., the therapy that many parents say is the only way their children were able to learn to make eye contact, talk and get through the day without throwing tantrums. Some autistic adults, including some who have had the therapy, say that at its best it trains children to repress their natural form of expression and at its worst borders on being abusive. If an autistic child who screams every time he is taken to the supermarket is trained not to, for example, he may still be experiencing pain from the fluorescent lights and crush of strangers.
“Behaviors are so often attempts to communicate,” said Jane
Meyerding, an autistic woman who has a clerical job at the
University of Washington and is a frequent contributor to the Autistic Advocacy e-mail discussion list. “When you snuff out the behaviors you snuff out the attempts to communicate.”
Perhaps the most public conflict between parents and adult autistics came in a lawsuit brought by several Canadian families who argued that the government should pay for their children’s A.B.A. therapy because it is medically necessary. Michelle Dawson, an autistic woman in Montreal, submitted testimony questioning the ethics of the therapy, which the Canadian Supreme Court cited in its ruling against the families in November.
Ms. Dawson’s position infuriates many parents who are fighting their own battles to get governments and insurance companies to pay for the expensive therapy.
“I’m afraid of this movement,” said Kit Weintraub, the mother of two autistic children in Madison, Wis.
Ms. Weintraub’s son, Nicholas, has benefited greatly from A.B.A., she said, and she is unapologetic about wanting to remove his remaining quirks, like his stilted manner of speaking and his wanting to be Mickey Mouse for Halloween when other 8-year-olds want to be Frodo from “The Lord of the Rings.”
“I worry about when he gets into high school, somebody doesn’t want to date him or be his friend,” she said. “It’s no fun being different.”
The dispute extends even to the basic terminology of autism.
“I would appreciate it, if I end up in your article, if you describe me as ‘an autistic’ or ‘an autistic person,’ versus the ‘person with…,’ ” Ms. Dawson wrote in an e-mail message. “Just like you would feel odd if people said you were a ‘person with femaleness.’ ”
Ms. Weintraub insists on the opposite. “My children have autism, they are not ‘autistics,’ ” she wrote in her own widely circulated essay, “A Mother’s Perspective.” “It is no more normal to be autistic than it is to have spina bifida.”
Terry Walker, 37, who has Asperger’s syndrome, said he was not opposed to the concept of a cure for autism but he suggested that there was a pragmatic reason to look for other options.
“I don’t think it’s going to be easy to find,” Mr. Walker said. “That’s why I opt for changing the world around me; I think that does more long-term good.”
http://www.nytimes.com/2004/12/20/health/20autism.html?ex=1104553752&ei=1&en=aa8a864471cd135f
Re: How About Not 'Curing' Us
I agree marycas, that there is a difference between a non-verbal child and a child with social eccentricities. I do wish my maybe nld child wasn’t under such pressure to conform socially. He’s (I think) within the bell curve of normal social behavior, but suffers for his quirks. If more adults understood that a child like him isn’t being rude when they fail to make eye contact, or speak bluntly his life would be much less anxiety producing.
He himself has said that if losing his LD meant losing his creativiity then he would not make that choice.
Re: How About Not 'Curing' Us
I do not feel that remediating a disorder EVER eliminates other giftedness the person still has. I cannot imagine such a thing. Is helping my LD child to oversome her auditory processing and language comprehension problems going to emilinate her articstic talent? I don’t think so!
I am familiar with this argument because I have worked for many years with hearing impaired children. The technology is here (combined with therapy) that will allow a deaf baby to hear. I think that is phenomenal and my personal view is that it is almost child neglect not to opt for it…just as not seeking medical treatment for an illness, setting a broken leg so it can heal properly, not getting glasses if there is visual impairment, staying a non-reader because one has phonemic awareness problems, and so on.
There are degrees of autism just like anything else, and those who are high functioning, self-supporting, and independent really are doing damage to those parents who have more severely affected children who desperately need programs like ABA to help their children function better. I would be livid if I were one of those parents in Canada.
Janis
Re: How About Not 'Curing' Us
Sort of off topic: Oh, I did mean to comment on the 8 year old with the Mickey Mouse costume. How refreshing! That’s what I’d want my 8 year old to be dressed up as. Let’s see, she dressed as a cat this year at age 9. I see no reason to push kids into the adult world any sooner than necesssary. I absolutely loved the Lord of the Rings movies but I did not feel it was appropriate for my then 6 to 8 year old to watch!!!
Janis
Re: How About Not 'Curing' Us
>”KarenN”]I agree marycas, that there is a difference between a non-verbal child and a child with social eccentricities. I do wish my maybe nld
Well I think so too. NOt sure to what extent it is a different disorder. There is a lot of question about that. For sure there are high function autistic kids that start very much the way lfa kids begin (tantrums, limited language), but then at some point they go off and progress far more than an lfa kid does.
In all respects lfa is a more severe disability (though Aspie kids may be more aware of their differences).
>child wasn’t under such pressure to conform socially. He’s (I think) within the bell curve of normal social behavior, but suffers for his quirks.
It is really useful for kids to self-advocate and feel good about who they are. But that doesn’t mean that Aspie kids aren’t aware of their differences. I think I read there is a higher depression rate, etc.
>He himself has said that if losing his LD meant losing his creativiity then he would not make that choice.
Well I will have to say that I would differentiate here between ld and Aspergers. I think that some characteristics of Aspergers are so inherently part of your psyche in a way that ld never is. How ones sees the world is caught up in AS, how you process info that if you completely eliminated AS then the person would be some different person. If you eliminated the ld in most kids they would end up as pretty much the same without the specific disability. THink “specific” here (math, reading, language arts) vs “pervasive” as in PDD (global processing, learning style, interests, aptitudes, etc.)
Although I have argued that AS is a kind of learning disability— I think it is a little more than that. NOt sure about NLD since there is much cross over in dx.
—Jane
Re: How About Not 'Curing' Us
Hey Des,
The one thing I’ve observed in the last 3 years since discovering that my son is LD (among other things) is that very few of the other dyslexic kids we’ve met are without other neurological quirks. There are some kinda classic one issue kids, but many of the children at my son’s school exhibit traits of other disorders. Many have attentional, exec. function and sensory issues. Many have social issues even though the root cause may be different for different children. And this is at a school that specifically caters to “dyslexic” kids and not children on the autism spectrum. So I do tend to use the expression LD pretty broadly.
But of course I agree that remediating a phonological deficit is not going to rob anyone of their creativity or passions. Its more that my son has recognized that he is different in many ways, not just by being a late reader. But he tends to attribute his differences at least in part to the way his brain is wired, and part of his wiring is his dyslexia.
I hope that ‘s clearer.!
Re: How About Not 'Curing' Us
I agree with Des, the issue is that kids with AS and NVLD have more pervasive disabilities, with social/communication/behavioral deficits, than kids with reading or math lds. My son with ld acts and wants to be treated like the other 250 8th graders in his school, he does not have eccentric talents(sure he is sensitive and creative and a great babysitter) but not a genius in anyway. Remediating his ld allowed him to be less anxious about his life at school and made things better all round, but he’s not less or more creative than he was when he couldn’t read. From my experience with kids with NVLD and AS their “quirkyness” unremediated stands in the way of making their way thru middle and high school, where fitting in and being socially accepted is so cructial(more important than being very smart or creative).
Re: How About Not 'Curing' Us
SAR — while in fact I agree with you that life is easier if you can fit in (I often don’t and it’s still a hassle) your comment is what is called begging the question — WHY is social conformity so important in middle and high school, and is this how schools should be managed? Wouldn’t being more accepting of differences be a good thing in general? OK, there are some limits, but in general.
Re: How About Not 'Curing' Us
Yes, Victoria, my thought as well
Sure, bullying has always existed but has it reached a new level because we as a society have become less tolerant of individual differences?
I am amazed at how critical ADULTS can be of children; there was just a letter in an advice column about an overweight child on someones soccer team-and how could she ‘help’ that poor child and his incompetent mother
No, I dont obesity is harmless, but the assumptions the author was making about that family??!!!! Twenty years ago no one would have dreamed of asking that question(well, I really doubt it)
I think ‘normal’ has gotten more narrow since I was a kid and I miss those days….
Re: How About Not 'Curing' Us
[quote=”SAR”]I agree with Des, the issue is that kids with AS and NVLD read. From my experience with kids with NVLD and AS their “quirkyness” unremediated stands in the way of making their way thru middle and high school, where fitting in and being socially accepted is so cructial(more important than being very smart or creative).[/quote]
Well I think that’s where we part company Sars. I don’t really care to fit in. Never have, never did. I think that’s what the kids are saying in the article. I agree that things are rough in middle and high school, but that IF you accept your differences and embrace them that life is more meaningful in other ways. The other thing is that “remediating” those quirks is often more work than you can really imagine and not necessarily all worth the time and effort. I can do eye contact if I need to. I’m not sure if it ever comes across so normal though. However, I think that AS (and NVLD) are capable of deciding what they need to learn to do by middle and high school.
Marycas, I do get your point re: dyslexia. Real dyslexics (as opposed to some other reading problems) do seem to have wiring differences- for example of being more right brained to use the stereotyped and a bit inacurate reference. However, if you teach them phonological processing, you are not interfering with how they are in the world. The other thing is that dyslexia is not considered a disease. There is really nothing wrong with a dyslexic except that they can’t read but there is nothing “natural” about reading either. With AS, it has been considered a disease or condition. I personally see more promise in helping kids use their AS to their advantage, for example taking advantage of the special interests that AS kids have.
—des
Hear, Hear!!!
…Victoria, Marycas, and Des!!
Conformity can be taken to an extreme — some is necessary (ie manners)
some is NOT (ie clothing, interests, etc.!).
Years ago, ‘normal’ was a wider spectrum — but certain types of bullying were ‘ok’. People ARE nastier now — so are kids! Hence, our new approach to bullying, something I strongly support and advocate in all areas of my life. Life was not ‘perfect’ in the 60’s…but we can do better than both the sixties AND what we have today…
I’m with Victoria. Other than essentials that are necessary for living in groups, lets not teach our children that ‘different is dead’. Let’s CHANGE the culture in middle school. If the adults actively CHANGE it — the kids will change, too! If it is no longer tacitly accepted that the ‘weird’ kid is treated as the butt of all, and in fact becomes as unacceptable as…say, drinking and driving, then that behaviour WILL change. No, not perfectly — there will still be mean people. But if you remove the power of the bully to collect bystanders…fewer ‘odd’ children will suffer!
But, having a friend fighting for ABA, a life-saving treatment for her NON HF Autistic child (he’s not the worst but he had NO Life and neither did his family!) and having seen what it has done for him in the last two years — I would HATE to see this perfectly healthy attitude on the part of those who ‘are’ aspie used against children with similar but more profound levels of disability, in order to ‘save’ the state money (which will be spent, if not on teaching, on cleaning up the mess from NOT helping these children become functioning members of society — and it will be a much greater cost, monetarily AND socially!)
Money, Money, Money. Why does it matter more than anything????? Let’s all fight against THAT…!
Re: Hear, Hear!!!
>Conformity can be taken to an extreme — some is necessary (ie manners)
some is NOT (ie clothing, interests, etc.!).
Here, here!!
>Years ago, ‘normal’ was a wider spectrum — but certain types of bullying were ‘ok’. People ARE nastier now — so are kids! Hence, our new
I agree. Though things weren’t necessarily a picnic back then either. The thing is that when bullying exists now it is more of a crime than it was in the 60s because people are now more aware of it. If it exists it has to exist with a certain amount of tacit approval of schools. There are ways to drastically cut bullying and some schools do it.
>But, having a friend fighting for ABA, a life-saving treatment for her NON HF Autistic child (he’s not the worst but he had NO Life and neither did his family!) and having seen what it has done for him in the last two years — I would HATE to see this perfectly healthy attitude on the part of those who ‘are’ aspie used against children with similar but more profound levels of disability, in order to ‘save’ the state money (which will
I don’t really see this “Aspie is ok” thing really spreading to low functioning populations. For it to spread, it has to take a certain amount of approval by parents and acceptance by the autistic people themselves. This just is not going to happen in the low functioning kids. Despite what the article says, the line between low and high is pretty clear after about age 5 or so (before then it can be pretty unclear). ABA has also advanced over some of the crude methodology used back when where punishment was a standard technique. Old films of ABA are pretty shocking (well literally in some cases). Most good practitioners of ABA are using positive only methods and lots more intrinsic motivations, at least at the higher levels.
I belonged to ANI which was mentioned in the article. We actually wrote an advisory re: ABA, and it was NOT mostly negative, as the article seems to indicate. There were parents of kids in ANI using ABA and not getting any flack at all.
>Money, Money, Money. Why does it matter more than anything????? Let’s all fight against THAT…!
I think we would all agree to that.
—des
Great thread!
This is just how I feel about my “adhd” boys! I don’t think there IS anything wrong with them! I just think they don’t fit into a regular classroom, and they don’t like other people to tell them what is important to do. We have done a lot of work with empathy and predicting consequences, not because I wanted them to be different than they are, but because I wanted them to understand how they are perceived by others, so they could learn to DECIDE whether they were willing to experience the consequences of their behavior. Sometimes they are, and sometimes they are not, but they now both understand that annoying people is generally NOT the best way to accomplish your goals, and that sometimes the discipline to do something you DON’T want to do is needed to achieve something you DO want. It’s a lot of work, and sometimes we were near to despair about it, but I never doubted that this is the correct approach for my kids. They have never thought of themselves as “abnormal” - they just are good at certain things, and not as good at other things. They have also learned that they can get better at ANYTHING they want to if they work hard enough, including improving their ability to gain the support and approval of others when that is important. I think this is true for EVERY child! If we focus on abilities and challenges rather than labels, I think we end up with happier and healthier children.
Thanks for sharing this perspective!
Re: How About Not 'Curing' Us
I am not going to try and reply to all the other responses here, and I will appologise now for taking so long to post my thoughts…
I would like to start by shocking the board and saying that I disagree with the underlying sentiment of the piece as it applies to children like my boy. While I certainly agree that it is more appropriate to have society make accomodations than expect change for Aspies and some HF Autists, children on the low end of the Spectrum need serious help NOW.
Hardly 2 weeks goes by without a news report of an autistic child dying by “misadventure”, usually getting out of the house and either drowning, dying from hypothermia or some other tragic (preventable?) accident. Additionally, we hear frequent reports of Autists being killed outright either intentionally (often by an extremely depressed parent) or accidentally (most often by misused restraints). Had these kids been given the opportunity to receive the quality of intervention (Lovaas as well as bio-medical) when they were young, there is a strong possibility that many would not have had their lives shortened.
I believe the problem comes from lumping all persons on Spectrum into one category. Because of this, people who are HFA and are able to function are not granted the respect they deserve to have opinions and a say in what happens to them. When they begin to voice their opposition (“nothing about us without us” Ms. Dawson said) they make the same mistake and presume to speak for my boy, which they have no right to do.
If we as a society do not put into place a more systematic process of offering intensive interventions (both educational like Lovaas and biomedical), made available to all appropriate children regardless of their parents’ ability to pay we are condemning a substantial number of children to a very hard life that historically has ended with them being completely segregated from the world in residential, where if they act too autistic will earn them a visit from Nurse Ratchet with her medicine cart.
I find that to be unnacceptable.
WOW...Steve and Dad, just got back to this thread...
Steve and Dad…you said it ALL! On different sides of the ‘spectrum’, so to speak…I agree with both of you. You are both quite correct, and this is why the original article ‘upset’ me. It seemed as though BOTH your attitudes, both the ‘right’ way to think, about the two ‘spectrums’ of function — ‘odd’ to ‘non functional’ — were being undermined by this piece via the attitudes it reports and will engender.
Essentially, the problem is the categorization, which is taken by we silly humans to an extreme. (collectively speaking, that is! If I ran the world it’d be way better!) We go ‘lumping’ people into diagnoses, but taking it sometimes far beyond the necessary, in our search to ‘fit in’ or have our children do so, as if the Creator made the definitions FIRST and THEN the people. The customs, mores, rules of society, the dx’s, are MAN MADE…and we are all UNIQUE, though some of us are more unique than others, LOL…
Between the two of you, you have said exactly what I believe about raising children, NT, AT, or in between!
Re: How About Not 'Curing' Us
>I would like to start by shocking the board and saying that I disagree with the underlying sentiment of the piece as it applies to children like my boy.
I don’t know, dad. I don’t find your sentiments shocking. I pretty much agree. I think that *if* autism is the same disorder at all ends of the continuum— a point I don’t think anyone has proven, then the quality of life is vastly different. It is like comparing being hard of hearing with being profoundly deaf. People who are h/h will hear English (or whatever language) and learn it, even if it gets muted and muffled in the process and they might not pick up everything. Someone who is profoundly deaf will not hear speech at all. Nothing about their experience prepares them for orally speech. It isn’t a perfect comparison but it does work in some ways.
I don’t think that many people who are hfa really have had experience with lfa people and sorry to say, I don’t think they know what they are talking about. The statement that the line between hfa and lfa is only true as far as about 5 years old goes. After that, the hfa kid will make great progress leaps, and the lfa kid will not.
I actually don’t think anybody (or at least too many here) disagree with you.
>While I certainly agree that it is more appropriate to have society make accomodations than expect change for Aspies and some HF Autists, children on the low end of the Spectrum need serious help NOW.
I think the statement that Aspies and hfa folk have many gifts and so on, is true. Except for some rare autistic savants, the same is not the case for lfa folks.
>Hardly 2 weeks goes by without a news report of an autistic child dying by “misadventure”, usually getting out of the house and either drowning, dying from hypothermia or some other tragic (preventable?) accident.
I probably know of, first hand, 4 lfa kids who died in drownings alone.
>I believe the problem comes from lumping all persons on Spectrum into one category. Because of this, people who are HFA and are able to function are not granted the respect they deserve to have opinions and a say in what happens to them.
I think that people in the hfa part of the spectrum benefit greatly from self-advocacy, it is meaningless to apply these same characteristics to lfa. I have even been at hfa seminars/conferences with lfa individuals using facilitated communications (without so much as looking at the keyboard) and their caregivers claiming they were high functioning individuals. It was a cruel hoax, imo. Meanwhile these individuals were NOT given any skills they could use without somone else’s hands working for them. I think a no. of hfa people have been fooled by this as well, believing that the vast majority of lfa people are highly intelligent poets inside. I know of one of the individuals in the article and I am sure this is the case with him. Our organization did make a statement re: ABA (mostly positive) but that was while I was there. I maybe am the exception of a few hfa people that have worked with lfa people.
>If we as a society do not put into place a more systematic process of offering intensive interventions (both educational like Lovaas and biomedical),
Agreed.
—des
DITTO...what Des said and wish I'd thought of all of it...
DES SAID: “*if* autism is the same disorder at all ends of the continuum— a point I don’t think anyone has proven,”
YES YES YES. Didn’t really think to say that — shows how much ‘accepted knowledge’ can affect us, even when there is really NO PROOF. And I try to avoid that kind of ‘experts tell us, so I believe’ thinking!
Similar to my experience with reading disorders…my highly imaginative, artistic, visual dyslexic LOOKED ADD to his caring 1st grade teacher who has an ADD child herself…she was not a problem, but the 2nd grade ‘teacher from H*LL’ and a principal educrat tried to PROVE she was right…it seems that this is what is happening in the article:
having essentially ASSUMED that Aspies, HFA, and LFA are all the same thing in different degrees, we then act to LUMP all three ‘dx’s’ together and apply similar treatments — MISTAKE!
Similar to responses to reading disorders…where the visual dyslexic isn’t cured by ADD meds and the ADD person isn’t cured by intensive tutoring with systematic phonics, so we say they are both ‘specific LD in communication’ and decide ‘some children just can’t learn to read’…(not ‘us’ as in those in this discussion, of course — but again, that ‘collective’ us as humans!)
I digress, but being that children are involved, I tend to get emotionally involved!
Dad, thank you for continually starting threads that make us think, stretch and grow…only this sort of discussion will bring progress for ALL children, on all spectrums from absolutely ‘Perfect Children’ to the most terribly afflicted…please keep it up!
Re: DITTO...what Des said and wish I'd thought of all of it.
[quote=”Elizabeth TO”]DES SAID: “*if* autism is the same disorder at all ends of the continuum— a point I don’t think anyone has proven,”
>YES YES YES. Didn’t really think to say that — shows how much ‘accepted knowledge’ can affect us, even when there is really NO PROOF. And I try to avoid that kind of ‘experts tell us, so I believe’ thinking!
Well that isn’t for lack of trying. There are some ways that Aspergers (esp, as opposed to hfa— where language comes in late) is similar to autism— as if it were a high functioning form. Such things as preference for sameness, etc. It would be like my example of hard of hearing vs deaf. We know they are related as both are hearing loss but the problems of both are entirely dissimilar. The other thing is that there are ways they are different, as if different disorders, though with some things in common. I forgot any fo these to give as examples.
I think the thing we wouldn’t debate is that the quality of life and quality of life possible are entirely different.
So I’m not sure that there is so much accepted knowledge and incomplete knowledge. We also don’t know if all autism (regardless of severity) is one disorder or many. My guess is that autism, and some characteristics are just characteristics and that there may be several or many different causes. Some (on the high level) may be more of genetic predispositions, while others may be caused by toxins, brain disfunctions, etc.
—des
Des, I agree...
totally once more. It is always good to remember that some of the ‘experts’ are people who weren’t really very intelligent, but were really really really good at ‘doing school’. It took me many years to understand that…especially carrying around the ‘gifted underachiever with not much formal education’ baggage that I do!
My, I think I will post an anti-label poem I wrote some time ago…well, maybe I’ll wait on impulse, second thought!
I heard about the article at an Early Intervention meeting this morning so it is ‘out there’
I dunno, Dad-how do you feel?
I’ve ‘guessed’ that your son has more of a severe case than high functionning/Aspergers but I could be wrong
My son had Aspergers ‘suggested’ by a psychologist and I don’t agree, but, more importantly, feel it is somehow an insult to families with kids who have severe autism to even hint that my quirky kid has the same issues
I’m not worried about who will care for my child when I’m gone. I don’t find myself shoved to the ground by my child-my other children aren’t bruised from being caught in a meltdown. My son speaks.
Yeah, hes literal. He doesnt ‘get’ many jokes. At 13, he still dramatizes in play much like a child of 9(heck, he didnt pretend until age 7)
So what?
I agree that the terminology is important-I dont think a high functionning
autism diagnosis needs ‘fixing’. When did our society get so achievement/goal oriented that an eight year old wanting to be Mcikey Mouse for Halloween is pathologically immature???
Yet, I have seen and worked with children with autism who would be blessed to find a way to communicate and function in society with a degree of independence
Curious where you stand?