Do "neurodiverse" kids need curing--or a culture of their own? Juliette Guilbert explores new developments in living with autism, ADHD, and other conditions.
36 comments:
JenG72
said...
As a mom of a 6 year old high-functioning autistic son, I am often torn between trying cure him and leaving him alone. I read these miracle cure books and feel like I have failed b/c he is not "normal". I think there comes a point where interventions can be too much. We do a diet and supplements and some therapy, but nothing dramatic. He gets great support at school and does well and is a wonderful person. Sometimes I wonder that if he were "cured", would he lose that special quality he has that fills my heart up with joy? But I do worry about how hard he has to struggle, and I want to make things easier for him in life. And, if he is in pain, or ill from toxic exposures to chemicals, vaccines, etc, I think he deserves to be healed from those medical issues, even if he remains "autistic" to the outside world. Bravo, Brainchild, for publishing this article.
Thanks for your comments, jeng72. I really believe that parents who face these issues are a lot more thoughtful than they get credit for. I hate it when I feel like I'm some sort of caseworker rather than a mother.
I have a 9-year-old daughter with Asperger's and a 4-year-old son with autism (not sure yet how to classify his level of "functioning," as his communication and adaptive skills are still emerging). With my daughter, I've found that there's a thin line between acceptance and denial. Definitely she has strengths (gifts, even), and honestly, I love some of her "autistic" traits. Sometimes I don't know what's autistic and what's just her personality. When it comes to the less-socially-accepted behaviors, this is a problem. The line between accommodating a disability and enabling maladaptive behavior can get fuzzy.
I can't quite get behind the neurodiversity movement, or at least not behind the more radical segment. I want my kids to be accepted. I want to not feel pressured so much to "fix" them. But I also want them to function in the NT world because that's the world they've got. Particularly with my younger son, who is delightful in so many respects but who experiences so much frustration every single day, the challenges and difficulties (for both of us) are ever-present. Like jeng72, I've often wondered if being "cured" would cause my autistic children to lose their special qualities that make them who they are. But I just don't know.
I like knowing that the extreme end of the neurodiversity movement is out there, even if I can't wholeheartedly agree that all therapy is bad.
Of course, part of the reason I can't wholeheartedly agree with them is that the line between parenting and therapy is so dang blurry anyway. I mean, I don't particularly care what mechanism my daughter uses to communicate with other people, but she does need to communicate with other people, and it's my job to help her figure out how, and language is generally more readily understood than interpretive dance, so I push her in that direction.
But it is sad to lose some of the dancey aspects of her communication, and I do daydream a bit about whether she might someday be able to save the human race when our planet is invaded by remarkably bee-like aliens who consider humans incapable of language and remarkably noisy. Or perhaps she will make The Perfect Pattern and it will trigger the Rapture and everyone just outside of normal will be instantly transported to a land flowing with milk and honey, or raisins and crackers if that's more their thing.
I think (hope) most parents feel those pangs of regret as they teach their toddlers rules and their preschoolers manners, those "I'm losing my brilliant wonderful perfect unique baby to a Social Unit" moments. Do you really need to *say* thank you if you beam the purest most infectious smile ever when someone gives you what you want? Is standing quietly in line truly a virtue? What's really so wrong with flapping when you confine the flapping to your own personal space?
Basically, I'm grateful for every voice out there saying, "It's okay to be atypical," and "People with autism deserve just as much respect as people who don't have autism." I like that a whole hell of a lot better than all the tragedy of autism crap out there. Yes, sometimes she's heavy, but a lot of that heaviness is imposed from the outside and it really doesn't have to be. Mostly, she ain't heavy, she's my daughter.
I agree with jeng72 BRAVO Brain,Child for publishing this article! And, I absolutely want to commend Juliette for a well written, thought provoking story. I copied the link and sent it onto my Mother's and More chapter as well as some hand picked family and friends. Having been a pediatric OT for the last 20 years and a mom for the last 4 I found the article extremely educational and presented a well balanced picture of various treatment perspectives available today. Also, thanks for clueing me into some new "lingo" since I have been out of the OT field for about 6 years now. I'm very close to reentry back to OT work and your article has not only educated me but has inspired me. Parenting is not for the faint of heart even when caring for "typically developing" children. I hope as a therapy provider I can always approach my families with the open mindness and compassion expressed in your article. Thanks for your hard work Juliette!
I'm the father of a now 16-yo autistic son, and an Asperger adult myself.
I think the cure vs. don't-cure "choice" is a false dilemma.
It just isn't black and white like that.
Embracing neurological diversity, on the one hand, and on the other hand helping your child navigate an overwhelmingly neurotypical world still by-and-large ignorant of neurological diversity as a legitimate dimension of human variety, are *not* mutually exclusive.
I think journalists are under pressure to find "man bites dog" in order to have a story with a hook, and that pressure leads to turning the issue into the false dichotomy that we see played out time and again in stories about the politics of disability.
The radical fringe of autistic identity politics -- groups like Aspies for Freedom -- do more harm than good, in my opinion. They become real live poster children for those elements of the political landscape who feel threatened by autistic self-advocacy, who seek to neutralize autistic self-advocacy by pushing that false dichotomy.
They also play into the hands of those who want to draw dividing lines between "high functioning" and "low functioning" (usually on the basis of the presence or absence of functional expressive speech) and deny power, respect, equity, and parity to those they deem "low functioning" while attempting to buy off those they deem "high functioning".
So Aspies for Freedom does not speak for me any more than Autism Speaks does -- which is to say, not at all.
I think you will find that most of us involved or allied with autistic self-advocacy are really in the common-sense middle. We want our kids (and other people's kids!) to grow up proud of who they are -- fully cognizant of, and fully comfortable with, what their instincts are -- yet capable of navigating a world in which it is not always safe to follow all of those instincts.
The real question that should be asked, of any intervention we contemplate for our children, as parents, is this: is the primary intent of the intervention to develop (or enable the development of) intrinsically valuable skills, or to make the child look and act more normal?
Some interventions could be leveraged to both ends. We have the choice and the power -- by voting with our feet and our pocketbooks if by no other means -- to make one or the other goal the higher priority.
We can teach our kids what the expectations and behaviors and mindset of the majority will be, and help them develop the skills they'll need to meet those expectations when dealing with that majority, while at the same time affirming the validity and value of their differences.
It's like when we train American business people to do business in Japan. We teach them all they'll need to know about the cultural expectations, behavior, and mindset of their hosts, but we don't try to "cure" them of their Americanism or teach them (even implicitly) that it is disordered. Less functional in the Japanese business context, but not disordered and *not out of place back home*.
I wrote about this several years ago, specifically regarding ABA-based interventions for autistic kids, here. But I think the same principles and considerations go beyond any one kind of intervention, therapy, or educational program.
And that is what the *real* story should be. We just need to work on the journalists to quell their fear of getting spiked for reporting the purportedly undramatic truth of the common-sense middle ground. Because doing so might help along the social change for the better we in the middle are working to achieve.
Phil, I do feel like I came to a middle-ground position in reporting this story -- as a parent, anyway. I really appreciated the "normal people suck" point of view, especially since I was never entirely "normal" either.
But as a journalist, I didn't exactly have to dig to find a "hook," as you call it, for the story. After all, the founding document of the self-advocacy movement literally accuses parents of wishing their autistic kids did not exist. This kind of provocation hardly needs my help to appear dramatic.
Has anyone been following the hoopla over the "Ransom" ad campaign in NYC? Check it out here:
I have to agree that the Edison/hunter story is worth telling. Here's why:
As a child, I tested well, and I was told I was gifted and superintelligent from an early age.
Since then, I have done a large number of extravagantly stupid things. I also haven't been much of a success in life, by most conventional measures. Nonetheless, my faith in my own genius has never wavered. In fact, that faith is often the only bright spot in an otherwise tattered self-esteem.
I think I internalized that early narrative about my intellectual abilities to a degree that would have frightened my folks. I can figure out a lot of things today because I developed the habit of believing I could. This instinct of confidence is so basic to my cognitive process, and happens so quickly and unconsciously, that for all practical purposes it actually made me smarter. And I couldn't learn it now if the Wizard of Oz handed me a Doctorate of Thinkology every morning.
So, in my experience, these early narratives really stick with you. If you can find a way to avoid having your child get into the habit of thinking "I can't"-- and I don't envy you the effort-- do it if you have to lie outright.
The effect on my future relationships of another, less salubrious narrative of my early development, "Girls won't like you because you're fat," is left as an exercise for the reader.
I can't seem to get the NY Times link up here -- it's too long I guess. The article is called "Campaign on Childhood Mental Illness Succeeds in Being Provocative" and it was in the 12/14 Media & Advertising section.
I think it's fascinating -- and heartening -- that both autistic self-advocates and their allies, *and* cure-oriented parents, are having the same reaction to the NYU Child Study ad campaign.
I also think that Jim Sinclair's "Don't Mourn For Us", which you referenced in your prior comment to me, functions as a fascinating verbal Rohrschach-test upon its readers.
Some parents recoil from the passage you paraphrased and don't hear the main messages of the essay. Others take it in stride, and draw strength and hope from the rest of the essay -- which is really an invitation to a positive, affirming approach to our kids.
I was very much in that latter category, even upon first reading of the essay. It, and Oliver Sacks's biographical portrait of Temple Grandin, "An Anthropologist on Mars", were the two pieces of writing pivotal to shaping my early response to what we were learning about our son. And that was months before my own AS diagnosis.
I think that the reaction a parent has to "Don't Mourn" hinges upon at least a couple of factors.
One of them is the extent to which they fully grasp and accept the integral nature of autism -- that it informs cognitive style, affective response, sensory needs and preferences, aesthetic sensibilities, and social needs and preferences. It's as fundamental to identity as gender, race, ethnicity, and gender-orientation. So if you realize that, then the idea that wishing your child were non-autistic is in many ways a wish for that child to be someone else, isn't so far-fetched. What do you make of a parent's wish that a child were of the opposite gender? That's really the same sort of thing. Those wishes arise, but most parents work through them, hopefully without conveying them to the child in question.
Another factor is the extent to which the conclusion Jim reaches touches strong nascent emotions in the reader. A tinge of guilt can easily turn into angry rejection of the whole essay and the other, more important messages in it.
Yet another factor -- maybe the most critical one -- is whether the parent has reached the insight that "autism" and "handicap concomitant with autism" are *not* one and the same thing. Working to mitigate *handicap* concomitant with autism, but not the identity-informing characteristics of autism, is what the middle road I spoke of in my previous comment is all about.
If more parents intent upon a "cure" were to sit down and really think through what they think they mean by "cure", what it is they want to change, I think more of them would find themselves in agreement with the vast majority of autistic self-advocates and their nonautistic allies.
One last thing -- I owe you an apology. I think you did a tremendous job of researching and covering all the bases with this article. I went on at length about what journalists tend to do when reporting on autism politics, and that, coupled with not coming out and saying what the strong points of your article are, must have left you with the impression that I thought it was just another iteration of the false dichotomy. It's much more than that -- you did a great job of bringing in sources from all sides.
BTW, for what it's worth, I do *not* subscribe to the notion that "normal people suck"... I think attitudes like that are harmful in the way "Aspies for Freedom" is harmful.
Madhousewife wrote: "The line between accommodating a disability and enabling maladaptive behavior can get fuzzy."
I think there's actually a simple way to draw that line, that makes sense. It has to do with boundaries. Does a behavior violate other people's legitimate boundaries? Screaming, destruction of property, physical assault -- all clearly do. Hand-flapping? Playing with toys in a sensory rather than a pretend-story manner? In general, no. I can't buy that someone has a "right" not to have to look at behavior that they consider odd. That would be like asserting a "right" not to have to share the swimming pool with people whose skin is a different color than yours. But that said, there are contexts in which those activities might be detrimentally distracting -- for example, in a room full of peers trying to stay focused on an exam, for whom the visual distraction is indeed a boundary violation.
It's hard to generalize. There is no one hard and fast set of rules. But applying the general *principle* of identifying legitimate boundaries and whether those boundaries are being violated goes a long way.
Credit where credit is due: the notion of analyzing boundaries this way as a guide to distinguishing maladaptation from legitimate accommodation comes from Jim Sinclair -- the same person who wrote the essay "Don't Mourn For Us" that Juliette and I have been discussing back and forth. (You can read "Don't Mourn For Us", by the way, here.)
This is my first time discussing a Brain, Child article, so please let me know if I cross any unspoken community lines.
I loved the article, but as a believer in neurodiversity (for myself- I show many signs of Asperger's and as a baby one doctor said I was retarded, another autistic, and my mother also thought I might have autistic traits), the author has overlooked the part of the movement that does not so much scorn behaviour modification, but rather, scorns the idea that there is a cure, as in, that people can turn into neurotypicals.
I am thankful that my mother encouraged me to restrain my temper; to logically deduce how to interact with other people when I couldn't sense it "magically" like other people do; that she helped me learn not to obsess too much. All parents modify their children's behaviors in some way. The aim is to make it possible for the child to have the richest possible life with the least amount of pain for herself or others.
But that does not mean that one must believe that the child is somehow broken, in a "living hell" as some so-called autism "curebies" will say, or sick.
It is not so much the difference between thinking that the child needs to grow and change, or not grow and change (we all know that everyone does), as it is the difference between thinking that a child is essentially an able, whole person, and thinking that he is not.
I am also disappointed that the author failed to distinguish between people who believe, contrary to mainstream science, that autism is a result of an injury of some sort (e.g. metal poisoning from vaccines), and therefore believe that a child can be fully cured and turned into a "normal" child, and those who advocate intensive treatment for children who have neurological problems rather than just letting them continue to practice self- and other-destructive behaviours. There is an enormous different in the membership, conduct, and beliefs of these two groups, while the author lumps them all together under the term "curebies". I think that this misses a lot of nuance that exists in the online and offline debates.
Overall I did really appreciate this article and would like to thank the author for sharing her journey.
Edit: In the fifth paragraph, I wrote "able, whole person". I should have written, "whole person". I think that "able" is too ambiguous in the context. Although in some respects I would like to keep it in there I should really find a better word.
I am a dyslexic who has 3 kids who are far from neuro-typical. They are all very bright but they all learn differently. One of those children is an alphabet kid, or rather a kid whose diagnoses get listed as a string of letters following their name.
I think both camps have it wrong. A huge part of the problem is that our society, and especially our schools have become outright hostile to any child who is neurotypical. They are set up so that kids who don't think and breath in a sequential language oriented way are shunned, told they are stupid, felt inadequate, separated and constantly made to feel like they are being squeezed into some mold that they will never fit into. And this happens even if the child's LD is remediated. We have such a narrow vision of what makes a kid successful these days that we have created an Us versus Them situation. If parents of atypical students perpetuate the Us versus Them world the challenge of having our kids fit in and be successful contributing members of our society is only going to get harder.
BTW, the whole special education process only makes the "Us versus Them" situation worse. Because rather than providing an education that works and benefits all kids, we instead provide an education that only benefits the neurotypicals and make all other parents fight to get their atypical kids educated. It is a system that works to benefit a few and in this system the rich get richer and the poor get poorer. Atypical children loose out and the neurotypical children increasingly have a school system that allows them to excel above and beyond their intellectually equivalent atypical peer.
I attended an Ivy league college. At college I got to know and friend many atypical types. Looking back I suspect our group of friends from college had a whole range of diagnoses not that dissimilar to the letters that follow my son's name. The difference is today none of us would of gotten into an Ivy League School, if we even got into college at all.
My kids have been fortunate that they have benefitted from some wonderful interventions and therapies. Therapies I wish I had had when I was younger. How I would of loved to have learned strategies that would of helped me struggle less so I could focus on my strengths more.
But even with those wonderful therapies, my kids are never going to test well on standarized tests. They are never going to be high-output producing straight A types in our competitive suburban high school. Their brains think slowly and more creatively than most and to be honest creativity and slowness just don't test well.
Oops I meant to write that our schools and culture are hostile to any neuro-atypical child. Also since I am bored this evening, I figure I could clarify what I meant by this. Think about how we define success for our teens these days. Think about the what it takes to advance socially and financially in our culture. Our schools have become factories and those kids who succeed are those kids that can produce tangible, measurable results. All the rest are left to feel like they are somehow not good enough or not smart enough. Standards and years of the ineffective "No Child Left Behind" have killed education.
Our schools these days focus on output not on comprehension. And output is so important that creative kids are penalized because it is unacceptable to make mistakes. We get kids who can get the A's and score the high scores but they can't analyze material, they don't ask questions, they don't look at things from many angles and they are not interested or passionate about anything.
I had a well known educator (the director of a leading school for children with learning disabilities) tell me once that good special education is good education for ALL. So much of this artificial battle about whether a child is neurodiverse or not is artificial. If we put the art back into teaching, many of our kids might still have labels but those labels would not end up dominating their lives or the lives of us parents nearly as much.
An anthropologist I know was doing field work in Mali. Her youngest son had Down's syndrome and was home in the US with dad. While doing field work she saw a young boy with Down's syndrome, which is unusual because a child with Down's syndrome might not survive in a place like Mali if they had heart problems. She was excited and showed the mom the picture of her son explaining to her that she had a boy like her child. But the mom was perplexed. She did not understand what this white woman was saying about her son being different. The african child with Down's Syndrome was so well integrated into the community it was hard for this mother to see any similarity between her son and the photo of the white boy being shown to her. When the anthropologist figured out why the mom was not responding to the photo of the boy she found herself flooded with tears. For it dawned on her that it is our culture can be so cruel to anyone who is different.
I really appreciate all of these thoughtful comments. Mahtob, excellent point about the two schools of thought on autism etiology -- but don't you think there is considerable overlap between them? Even if autism -were- caused by some sort of neurological injury, that would not prevent its being treated with behavioral, occupational, and other therapies. In any case, I would have to do another several months' research before taking on that minefield!
In the arena of curebie-ism, researchers recently made headlines by reversing some of the symptoms of Fragile X Syndrome, the leading known genetic cause of autism, in mice. Fragile X also causes other symptoms, but I wonder if this is relevant to the "disease vs. difference" debate?
"Mahtob, excellent point about the two schools of thought on autism etiology -- but don't you think there is considerable overlap between them? Even if autism -were- caused by some sort of neurological injury, that would not prevent its being treated with behavioral, occupational, and other therapies. In any case, I would have to do another several months' research before taking on that minefield!"
I think that while most of the autism-as-injury camp are so-called "curebies", a large portion (if not a majority, then a substantial minority) of people who believe in a cure or at least significant improvement do not believe that autism is an injury. They believe that it is congenital, if not partially genetic.
I also think that there is a large movement that believes that autism and other neurological disorders or "different orders" if you prefer, are caused by aluminium or mercury in vaccines, i.e. that they are different manifestations of heavy metal poisoning. These people might not be in the majority but they are a very close-knit group and they are also very vocal and visible. They can be distinguished from people who believe simply that autism can be cured.
From what I have seen, the big problem that the neurodiversity crowd has with the former group is that, because they believe that they can prevent and cure autism, they feel that they have a responsibility to lobby their causes. And in lobbying, phrases such as "lost", "worse than death", "living hell", etc. get bandied around, presumably to drum up sympathy for the families and thus, support for the movement. Or perhaps because they do believe that autistic people are in a living hell. I'm not autistic so I can't say but I wouldn't presume to say it of someone else and I don't know any autistic people who do say that. The offensive thing here is that they presume to speak for all autistic and/or autistic spectrum disorder and/or neurologically disordered people and they say really horrible things about these conditions.
"It's like when we train American business people to do business in Japan. We teach them all they'll need to know about the cultural expectations, behavior, and mindset of their hosts, but we don't try to "cure" them of their Americanism or teach them (even implicitly) that it is disordered. Less functional in the Japanese business context, but not disordered and *not out of place back home*."
Incidentally, this reminds me of another point. People with Asperger's, if they are well-adjusted and relatively well-brought-up, which is completely possible in any loving family without any special therapy (in my opinion), are also remarkably good at working in different cultures. We have been living in a "foreign" culture all of our lives. My whole LIFE I have had to figure out everything phrase by phrase, word by word, gesture by gesture. I have also never gotten culture shock, interestingly. This is one of the things that the neurodiversity crowd wants mentioned: that we also have our gifts, which are the mirror sides of our weaknesses. It's not some special bring-on-the-rapture gift, I'm afraid, and nothing genius, either. But it is a talent, let's say. Medicating or operating away the ability to ignore culture also medicates or operates away the gift for travel and unique perspective that comes with it.
Again, it is one thing to socialize a person. It is quite another to try to make her normal.
When I first discovered my son had autism, I wanted to run into the middle of the street and scream for help. I wanted the fire trucks to come blazing down the street, for Superman to fly down from the sky and "save" him. I couldn't believe I had to just sit and wait patiently for the early intervention people to call and make our first appointment. I wanted this "autsim" to go away NOW. Well, it has been five years now, and there is obviously no magic cure. My son is an amazing, clever, funny, and compassionate child. However, if I could wave my magic wand then, yes, I would take away his anxiety, his obsessive compulsive traits, his fear of certain sensory inputs, his rigidity, the lag in his fine-motor skills, his hysterical resistance to turtlenecks and buttons and coats, and his difficulty in recounting a story about his day at school. If I could take all that away, I'd still have my boy - only without all the pain. I think it is a reasonable thing for any mother to wish for.
I was covered by the article, yet I was not sure if I was being lumped in with the sort of people (usually, as you said, teenagers) who do the "NTs suck" or "aspie supremacy" stuff.
Because that's not me, that's not who I am, and that's not what I stand for. I don't stand for "doing nothing" and neither does Michelle Dawson and neither does Jim Sinclair and neither do most of the people I have ever met.
I come from a viewpoint informed by the disability rights movement, though. This says that yes, in fact, a society is built for the strengths and weaknesses of only some sorts of people. So how do we make this society more accessible to people?
Because the disability rights movement was mostly formed by people with physical impairments, a lot of people aren't used to thinking of it in terms of cognitive disability, but there are a lot of us working to show how it fits.
I don't really consider myself as much part of a "neurodiversity movement" as a tiny branch of a larger disability rights movement. I find a lot of what I see go on in the name of neurodiversity to be hypocritical in the extreme, like "Accept me because I'm not 'retarded'." No way. If it doesn't encompass the value of and justice for all people, it ain't my movement. One of the better writers on this topic is Cal Montgomery, you can look her up at the Ragged Edge Magazine website.
I guess I'm not much for defining a position's worth on whether it's in the middle ground between two other positions or not, either.
I don't actually think the "normality sucks" attitude is more extreme. It really isn't.
The reason it's not a more extreme version of attitudes like mine, or of attitudes like Phil's, is because it's not even in the same direction that Phil or I are going.
It's off somewhere in left field, and I do not enjoy hearing that somehow the idea that a certain group of people "suck" is a more extreme version of the bid for equality that most of us are actually working for. How does some sort of person sucking become a more extreme version of wanting to be seen as equals? It makes no sense. (I'll just assume Phil hasn't thought this one through because I'm sure he'd agree with me if he had.)
So I don't think I occupy a middle ground or an extreme. I just occupy what I occupy, and what I occupy was not represented in the article despite my being quoted in it. I feel the way I always do after realizing someone has been reading me with a filter on that lets them only see what they expect to see.
*waves*
To quote a poem I wrote once...
I'm over here.
Not over there.
Here.
And, I'm not too capable of doing this right now because I just got out of the hospital and I've now got a viral infection screwing with my lymph node. But Phil? Can you find some links to stuff I've written about this on my blog, maybe? Including that one where I showed how the word "intervention" and similar things would look when used on non-disabled children? But also things that actually show my point of view which was not among those represented.
It's strange to me, too, just musing aloud here, but how some parents read me and go "oh cool" and others read me and go "you hate me" and I'm writing the same stuff... and it's not ever about hate.
Okay, I just realized after I posted that, what I think could be summed up as something close to:
You don't have to fix us in order to live a good life.
We need to learn autistic strategies for managing the world, not non-autistic ones. The strategies are different because our brains are different and process information differently.
Education isn't "fixing" us any more than education "fixes" any other person.
I believe everything about autistic people that most people (including me) believe about non-autistic people when it comes to raising children. It's just that the shape is different so you have to do things differently.
And somehow when we do something to a non-autistic child it's just "raising the child" but suddenly doing it to an autistic child is "therapy".
You have to understand our objection to "therapy" in those terms -- many of us object to the medicalization of teaching our sort of people. Teaching is not a medical process even if it's done by a speech pathologist. It's a learning process like any education.
And the other thing is, never, ever take form over function.
There are a million ways to do the same thing.
Autistic ways won't look like non-autistic ways.
Find the best route to doing the same thing, accomplishing the same thing, rather than finding the most usual route to doing the same thing.
But, of course, words get twisted and eventually you'll hear some people claiming we hate everyone non-autistic, which aside from a few is really not the case at all.
I am 33, and was very much like you daughter Aurora as a girl. The only difference is that I was sufficiently able to compensate for my dyslexia to do well academically. But I (and my life) have suffered terribly due to poor coordination, difficulty reading people, poor rhythm, and horrible handwriting. I've had a hard life because of it, until recently.
Now I no longer fit the defintions of dyslexic(severe), dyspraxic(very severe), ADD(mild) and auditory processing disorder (super-extreme). Because I at least did well academically, the layers of denial, of my hiding the problem (I was very good for many years), and blaming other factors (sexism, bad luck, grim economy) for my difficulties in life.
I found another path, besides accepting these disorders or the conventional medical model.
At the age of 31, my life was at the nadir point, and I discovered by chance that hidden behind the shelf of typically ineffective "alternative remedies" such as fish oils, antioxidants, gluten-free diets, additve free diets, accupressure and so forth, lies a FEAST of treatments that involve retraining the brain-and that really do work.
I know that you tried a host of "alternative remedies" but have you ever contacted the Institute for Neurophysical Psychology (INPP) about Aurora?
Probably not. First of all it is virtually unheard of in the United States, even among very avante-garde and "alternative" people. (But well respect in Britain. In the US several Optometrists in particular are starting to embrace it.) Secondly the timeframe described in your article suggests that Aurora has not gone through the program (which usually takes over a year for people who are very impaired).
You might feel that I'm giving you a pitch for a new program, after you tried all sorts of desperate things. And I would fully emphasize having seen a lot of baloney cures for this (and having been approached with all kinds of baloney cures for my hypothyroidism).
But I an nearing the end of the INPP's program, and have also undergone an auditory training program at their recommendation. And it has changed my life beyond on all reckoning.
I don't feel spacy anymore. I no longer envy even Nixon's level of physical grace. I can understand what people around me say and read faces. I know longer have a hard time focusing on job applications and dry reading.
First Juliette, you might want to start with the INPP website and see if Aurora looks like a canidate for NDD (they have a rule of thumb questionairre), and they will explain how inappropriate reflex develop is frequently an underlying cause of ADD, dyslexia, coordination issues/dyspraxia, auditory processing disorder, adult anxiety disorder, and at least in some cases contributes to a host of other problems.
http://www.inpp.org.uk/
And if you daughter is not a canidate for the INPP program, the she can likely be helped by HANDLE (or maybe both). Since she has an auditory processing disorder she is almost certainly a canidate for various listening programs (not the "work around it" education most schools provide) such as TLP, Tomatis, Samonas, or other methodologies.
Since she has ADD, auditory, and coordination issues, she is almost certainly a canidate for "Interactive Metronome": A superb tool for teaching the brain to develop new pathways and new ways of doing things.
Unfortunately, most diagnosticians will tell you nothing about these methods, but plenty of professionals (good professionals not the fly-by-night TV docs you see behind so many fish oil/snake oil kinds of cures) are starting to get on board.
If you want to talk to me some more, I think you will see my e-mail. However, I've given you websites enough to start learning about these new methods.
Although, the INPP website only talks about finding help in Britain, there ARE a growing number of practitioners being trained in the United States.
To do the INPP program, you only need to see the practitioner once every two months or so.
If Aurora is a candidate (very, likely based on your article) the excercises would take only ten minutes, but must be done every single day.
You only need to see the practitioners in order to update the excercises. I take the Amtrak train from Oregon to Santa Rosa California every few months, and am hoping to be finished by my next visit. (There may be more practitioners on the West Coast now.)
I know this may be a tall order. But if your girl is a canidate and improper reflex development is a key reason for her processing disorders, it will be so worth it!!
I did it and can't express how much it changed me!
My son was diagnosed by 4 specialists (we wanted to make sure?) with ADHD with high impulsivity. My son came home from school nearly every day for 3 years crying because “no one likes me” or “I have no friends.” Birthday party invitations stopped coming in about the 3rd grade. He has no learning disabilities and takes tests well but his grades were poor because he couldn’t follow through or stay focused. My heart was breaking (and still does sometimes) for him. We tried behavior modification, modified diet, group therapy, etc. before resorting to medication. Luckily, the small Catholic school he attended embraced behavior mod. techniques and found them useful for many children. Once he started on the medications he began employing the techniques he had evidently absorbed but been unable to slow down enough to apply. His father was afraid that he would turn into a zombie with no personality. Trust me, he never lost his quirky personality but now he can often employ it to his advantage. Medication was no silver bullet and not for everyone, but at least he was able to slow down enough to think things through before he speaks so he doesn’t get in trouble with his peers and his grades improved greatly. He came home happy more often than not and that alone was worth it. He is now 16 and attempting to get into the Naval academy but to do this he must be off the medication for 12 months so it is a big challenge for him, he struggles constantly but is now highly motivated and now believes in his abilities, he believes that he is smart enough, not lazy or stupid. Without the help of the medication I don’t think he would be able to stand up now and say “I can do this.”
Am I making him conform or fit in? To some degree I guess I am, but trust me when I tell you that my son still marches to a different beat but now he has a choice of how and when to listen to that different beat. If anything I think his world has been expanded, he has the ability to fit into the box when he wants to, something not possible before. Now he has choices and is able to make his choices from a place of understanding and experience. Before the medications he had little of no controls and therefore the choices were also beyond his control. Think about what will provide your child with the ability to control his life for himself for the long haul. Every child will have a unique path to follow, just help them get to the path that will work for them, which may not be the path you want it to be.
ADD kids are very often good canidates for the INPP proglram. (It only takes ten minutes a day!!)
Very often the reason a child has ADD, is because of a specifically retained reflex called the STNR. In babies, it is this reflex which makes them get up and crawl. But in an older kid who retains it the result if impulisivity, inability to focus, and often poor handwriting, or poor coordination.
Behavior modification might teach a child strategies for dealing with these problems, but it won't get the the root of them.
Similarly diet may help if a child has these problems as a result of food sensitivity rather than inappropriate reflex development, or if a food sensitivity or certain additives are compounding these developmental issues. But what a kid eats won't change the core problem.
Medication can make it easier for the child to cope, but withouth the correct intervention the developmental glitch will remain.
As an adult who has had the INPP program as an adult, I can tell you that the idea such programs rob a person's individuality is nonsense.
I think a lot of what drives the neurodiversity crowd is that they are so sick of having to work so hard for such mediocre payoffs.
I just want to thank Juliette for writing this article. Reading this has helped me fully embrace my son's autism. Him having Asperger's and me realizing I have mild Asperger's. I have done the sensory dance with him since the day he was born, and now at two and a half I have something to fully embrace to help him unfold as the person he is created to be and with a community to help offer me healthy coping skills for his unique needs and challenges. All of my own "unique" needs and challenges finally have a cohesive theme and a lot is falling into place for me, too.
Great article--I read it slowly so I could be sure to take it all in. Thanks for all that time-consuming research.
I have a cheerful, developmentally delayed 5-year-old that has taught me so much, esp. not to judge others and to accept learning differences whole heartedly.
My first son was all by the book--no learning/social issues at all, and I found myself thinking sometime: Why doesn't that parent just do THIS; or, I would NEVER allow that!
Well, guess what? My tolerance level is very different now. And I have my little guy to thank for opening my eyes.
I do not want to fix him at all--never even a thought that entered my mind, but I do want to help him be the best person he can be. So we've got all kinds of free services from our county's intermediate unit helping us. It's a slow process, and that's okay, 'cause we have a life-time here.
You mentioned a problem with hand writing and I want to suggest a hands-on program that is really pretty cool:
http://www.hwtears.com/
more specifically The Wood Pieces Set--
Thanks again for your time and energy spent on this piece. You offered so many POVs and quoted varied specialists that the reader can really form an intelligent opinion walking away from your story. Margaret
I want to add my thanks for this article and to the people who have commented on the article. I am having difficulty thinking of my son as "having a disability" and go back and forth between denial and wanting to get help for my son. At first glance my son does not appear to have a disability - he just appears bright and Naughty. Gut-wrenchingly, embarassingly naughty. I get the impression that most people think he behaves this way because I am a horrible mother. My self-esteem is plummeting and if MINE is plummeting, what about my son? As much as I want the world to change so that he is more accepted just how he is, the reality is that the world won't change in time for his developing self-esteem not to receive a walloping. And, bottom-line, his biting people has gotta stop.
He has been tentatively diagnosed as bi-polar, depressed, ADHD, twice exceptional, blah, blah blah. What route do I take when he starts kindergarten? Do I go ahead with special education services or will that stigmatize him (he has already been called Ä SPED" by a school official) Do we consider drugs or will the side effects be too much? Do we opt out of public education and send him to a school that is outdoor based (and too expensive for us) and hope for the curative powers of the outdoors?
As you can tell, the article comes at a key time for me. I hope that as more people comment (such as PACman's mom-her comment really gave me something to think about) I will be able to use their insights to help me feel better about our decisions.
Erin, Hi, I hear what you are saying about your son. I too had a son with a similar profile many years ago. He is now a lovely 17 year old man.
I read your post and I want to recommend that you visit the Child and Adolescent Bipolar Foundation Message Boards and particulary the message board for Complementary and Alternative Treatments. There you might find that me and other members might just have some answers to the questions you are asking.
Just thought I'd mention that this discussion is showing up when one clicks on the discussion link for the new article, "Outbound." Maybe somebody in the know can fix it :)
I am the mom of an 11 year old Asperger's son. He spends a fair amount of time wishing, hoping, trying to be "Normal".
The last thing I want for my beautiful, intelligent, talented boy is to spend his life wishing for something unobtainable and undefined!
He will do great things if he follows his true self and I would hate for him to lose that future and in place spend endless hours contemplating how to be "normal".
Unfortunately, society in general doesn't share my idealistic view point and it frustrates me to no end.
Tolerance!
Teach tolerance and maybe we won't need to spend so much time trying to "cure" what shouldn't need curing.
Happy Holidays! My name is Lisa Hope and I am the assistant editor of Disorder.org. I am contacting you today in hopes of developing a strategic partnership with your website; we have seen your site and think your content is great. Disorder.org is an online gateway for people to find information regarding disorder diagnosis, symptoms, and treatment -- and is continually adding content. If you're interested in a partnership, please contact me at lisa.disorder.org@gmail.com.
My daughter has been undergoing intensive therapy for the last two years with little results. We decided to take a month off over Christmas and guess what, she has become much more happier and relaxed and is now making much more eye contact. I mean the changes are significant. This has made me completely reassess her therapy program for this year. I'm going to start focusing on just having fun and being her Mum rather then her therapist and only stick with the therapists needed for her physical well-being (physio for her toe walking). My daughter is a beautiful, unique little girl and I love her for who she is. For anyone who is interested I've kept a blog on my daughter's progress over the last two years at http://skyegurtner.blogspot.com/
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36 comments:
As a mom of a 6 year old high-functioning autistic son, I am often torn between trying cure him and leaving him alone. I read these miracle cure books and feel like I have failed b/c he is not "normal". I think there comes a point where interventions can be too much. We do a diet and supplements and some therapy, but nothing dramatic. He gets great support at school and does well and is a wonderful person. Sometimes I wonder that if he were "cured", would he lose that special quality he has that fills my heart up with joy? But I do worry about how hard he has to struggle, and I want to make things easier for him in life. And, if he is in pain, or ill from toxic exposures to chemicals, vaccines, etc, I think he deserves to be healed from those medical issues, even if he remains "autistic" to the outside world. Bravo, Brainchild, for publishing this article.
Thanks for your comments, jeng72. I really believe that parents who face these issues are a lot more thoughtful than they get credit for. I hate it when I feel like I'm some sort of caseworker rather than a mother.
Juliette
I have a 9-year-old daughter with Asperger's and a 4-year-old son with autism (not sure yet how to classify his level of "functioning," as his communication and adaptive skills are still emerging). With my daughter, I've found that there's a thin line between acceptance and denial. Definitely she has strengths (gifts, even), and honestly, I love some of her "autistic" traits. Sometimes I don't know what's autistic and what's just her personality. When it comes to the less-socially-accepted behaviors, this is a problem. The line between accommodating a disability and enabling maladaptive behavior can get fuzzy.
I can't quite get behind the neurodiversity movement, or at least not behind the more radical segment. I want my kids to be accepted. I want to not feel pressured so much to "fix" them. But I also want them to function in the NT world because that's the world they've got. Particularly with my younger son, who is delightful in so many respects but who experiences so much frustration every single day, the challenges and difficulties (for both of us) are ever-present. Like jeng72, I've often wondered if being "cured" would cause my autistic children to lose their special qualities that make them who they are. But I just don't know.
I like knowing that the extreme end of the neurodiversity movement is out there, even if I can't wholeheartedly agree that all therapy is bad.
Of course, part of the reason I can't wholeheartedly agree with them is that the line between parenting and therapy is so dang blurry anyway. I mean, I don't particularly care what mechanism my daughter uses to communicate with other people, but she does need to communicate with other people, and it's my job to help her figure out how, and language is generally more readily understood than interpretive dance, so I push her in that direction.
But it is sad to lose some of the dancey aspects of her communication, and I do daydream a bit about whether she might someday be able to save the human race when our planet is invaded by remarkably bee-like aliens who consider humans incapable of language and remarkably noisy. Or perhaps she will make The Perfect Pattern and it will trigger the Rapture and everyone just outside of normal will be instantly transported to a land flowing with milk and honey, or raisins and crackers if that's more their thing.
I think (hope) most parents feel those pangs of regret as they teach their toddlers rules and their preschoolers manners, those "I'm losing my brilliant wonderful perfect unique baby to a Social Unit" moments. Do you really need to *say* thank you if you beam the purest most infectious smile ever when someone gives you what you want? Is standing quietly in line truly a virtue? What's really so wrong with flapping when you confine the flapping to your own personal space?
Basically, I'm grateful for every voice out there saying, "It's okay to be atypical," and "People with autism deserve just as much respect as people who don't have autism." I like that a whole hell of a lot better than all the tragedy of autism crap out there. Yes, sometimes she's heavy, but a lot of that heaviness is imposed from the outside and it really doesn't have to be. Mostly, she ain't heavy, she's my daughter.
I agree with jeng72 BRAVO Brain,Child for publishing this article! And, I absolutely want to commend Juliette for a well written, thought provoking story. I copied the link and sent it onto my Mother's and More chapter as well as some hand picked family and friends. Having been a pediatric OT for the last 20 years and a mom for the last 4 I found the article extremely educational and presented a well balanced picture of various treatment perspectives available today. Also, thanks for clueing me into some new "lingo" since I have been out of the OT field for about 6 years now. I'm very close to reentry back to OT work and your article has not only educated me but has inspired me. Parenting is not for the faint of heart even when caring for "typically developing" children. I hope as a therapy provider I can always approach my families with the open mindness and compassion expressed in your article.
Thanks for your hard work Juliette!
I'm the father of a now 16-yo autistic son, and an Asperger adult myself.
I think the cure vs. don't-cure "choice" is a false dilemma.
It just isn't black and white like that.
Embracing neurological diversity, on the one hand, and on the other hand helping your child navigate an overwhelmingly neurotypical world still by-and-large ignorant of neurological diversity as a legitimate dimension of human variety, are *not* mutually exclusive.
I think journalists are under pressure to find "man bites dog" in order to have a story with a hook, and that pressure leads to turning the issue into the false dichotomy that we see played out time and again in stories about the politics of disability.
The radical fringe of autistic identity politics -- groups like Aspies for Freedom -- do more harm than good, in my opinion. They become real live poster children for those elements of the political landscape who feel threatened by autistic self-advocacy, who seek to neutralize autistic self-advocacy by pushing that false dichotomy.
They also play into the hands of those who want to draw dividing lines between "high functioning" and "low functioning" (usually on the basis of the presence or absence of functional expressive speech) and deny power, respect, equity, and parity to those they deem "low functioning" while attempting to buy off those they deem "high functioning".
So Aspies for Freedom does not speak for me any more than Autism Speaks does -- which is to say, not at all.
I think you will find that most of us involved or allied with autistic self-advocacy are really in the common-sense middle. We want our kids (and other people's kids!) to grow up proud of who they are -- fully cognizant of, and fully comfortable with, what their instincts are -- yet capable of navigating a world in which it is not always safe to follow all of those instincts.
The real question that should be asked, of any intervention we contemplate for our children, as parents, is this: is the primary intent of the intervention to develop (or enable the development of) intrinsically valuable skills, or to make the child look and act more normal?
Some interventions could be leveraged to both ends. We have the choice and the power -- by voting with our feet and our pocketbooks if by no other means -- to make one or the other goal the higher priority.
We can teach our kids what the expectations and behaviors and mindset of the majority will be, and help them develop the skills they'll need to meet those expectations when dealing with that majority, while at the same time affirming the validity and value of their differences.
It's like when we train American business people to do business in Japan. We teach them all they'll need to know about the cultural expectations, behavior, and mindset of their hosts, but we don't try to "cure" them of their Americanism or teach them (even implicitly) that it is disordered. Less functional in the Japanese business context, but not disordered and *not out of place back home*.
I wrote about this several years ago, specifically regarding ABA-based interventions for autistic kids, here. But I think the same principles and considerations go beyond any one kind of intervention, therapy, or educational program.
And that is what the *real* story should be. We just need to work on the journalists to quell their fear of getting spiked for reporting the purportedly undramatic truth of the common-sense middle ground. Because doing so might help along the social change for the better we in the middle are working to achieve.
Phil, I do feel like I came to a middle-ground position in reporting this story -- as a parent, anyway. I really appreciated the "normal people suck" point of view, especially since I was never entirely "normal" either.
But as a journalist, I didn't exactly have to dig to find a "hook," as you call it, for the story. After all, the founding document of the self-advocacy movement literally accuses parents of wishing their autistic kids did not exist. This kind of provocation hardly needs my help to appear dramatic.
Has anyone been following the hoopla over the "Ransom" ad campaign in NYC? Check it out here:
http://www.nytimes.com/2007/12/14/business/media/14adco.html?_r=1&adxnnl=1&oref=slogin&adxnnlx=1197766841-AqSEx1AnR6gl/DhLtZxzdw
Apparently, parent advocates and self-advocacy groups are united in outrage over this "edgy" awareness campaign about autism, ADHD, etc.
I have to agree that the Edison/hunter story is worth telling. Here's why:
As a child, I tested well, and I was told I was gifted and superintelligent from an early age.
Since then, I have done a large number of extravagantly stupid things. I also haven't been much of a success in life, by most conventional measures. Nonetheless, my faith in my own genius has never wavered. In fact, that faith is often the only bright spot in an otherwise tattered self-esteem.
I think I internalized that early narrative about my intellectual abilities to a degree that would have frightened my folks. I can figure out a lot of things today because I developed the habit of believing I could. This instinct of confidence is so basic to my cognitive process, and happens so quickly and unconsciously, that for all practical purposes it actually made me smarter. And I couldn't learn it now if the Wizard of Oz handed me a Doctorate of Thinkology every morning.
So, in my experience, these early narratives really stick with you. If you can find a way to avoid having your child get into the habit of thinking "I can't"-- and I don't envy you the effort-- do it if you have to lie outright.
The effect on my future relationships of another, less salubrious narrative of my early development, "Girls won't like you because you're fat," is left as an exercise for the reader.
I can't seem to get the NY Times link up here -- it's too long I guess. The article is called "Campaign on Childhood Mental Illness Succeeds in Being Provocative" and it was in the 12/14 Media & Advertising section.
Juliette
Juliette,
I think it's fascinating -- and heartening -- that both autistic self-advocates and their allies, *and* cure-oriented parents, are having the same reaction to the NYU Child Study ad campaign.
I also think that Jim Sinclair's "Don't Mourn For Us", which you referenced in your prior comment to me, functions as a fascinating verbal Rohrschach-test upon its readers.
Some parents recoil from the passage you paraphrased and don't hear the main messages of the essay. Others take it in stride, and draw strength and hope from the rest of the essay -- which is really an invitation to a positive, affirming approach to our kids.
I was very much in that latter category, even upon first reading of the essay. It, and Oliver Sacks's biographical portrait of Temple Grandin, "An Anthropologist on Mars", were the two pieces of writing pivotal to shaping my early response to what we were learning about our son. And that was months before my own AS diagnosis.
I think that the reaction a parent has to "Don't Mourn" hinges upon at least a couple of factors.
One of them is the extent to which they fully grasp and accept the integral nature of autism -- that it informs cognitive style, affective response, sensory needs and preferences, aesthetic sensibilities, and social needs and preferences. It's as fundamental to identity as gender, race, ethnicity, and gender-orientation. So if you realize that, then the idea that wishing your child were non-autistic is in many ways a wish for that child to be someone else, isn't so far-fetched. What do you make of a parent's wish that a child were of the opposite gender? That's really the same sort of thing. Those wishes arise, but most parents work through them, hopefully without conveying them to the child in question.
Another factor is the extent to which the conclusion Jim reaches touches strong nascent emotions in the reader. A tinge of guilt can easily turn into angry rejection of the whole essay and the other, more important messages in it.
Yet another factor -- maybe the most critical one -- is whether the parent has reached the insight that "autism" and "handicap concomitant with autism" are *not* one and the same thing. Working to mitigate *handicap* concomitant with autism, but not the identity-informing characteristics of autism, is what the middle road I spoke of in my previous comment is all about.
If more parents intent upon a "cure" were to sit down and really think through what they think they mean by "cure", what it is they want to change, I think more of them would find themselves in agreement with the vast majority of autistic self-advocates and their nonautistic allies.
One last thing -- I owe you an apology. I think you did a tremendous job of researching and covering all the bases with this article. I went on at length about what journalists tend to do when reporting on autism politics, and that, coupled with not coming out and saying what the strong points of your article are, must have left you with the impression that I thought it was just another iteration of the false dichotomy. It's much more than that -- you did a great job of bringing in sources from all sides.
BTW, for what it's worth, I do *not* subscribe to the notion that "normal people suck"... I think attitudes like that are harmful in the way "Aspies for Freedom" is harmful.
Madhousewife wrote: "The line between accommodating a disability and enabling maladaptive behavior can get fuzzy."
I think there's actually a simple way to draw that line, that makes sense. It has to do with boundaries. Does a behavior violate other people's legitimate boundaries? Screaming, destruction of property, physical assault -- all clearly do. Hand-flapping? Playing with toys in a sensory rather than a pretend-story manner? In general, no. I can't buy that someone has a "right" not to have to look at behavior that they consider odd. That would be like asserting a "right" not to have to share the swimming pool with people whose skin is a different color than yours. But that said, there are contexts in which those activities might be detrimentally distracting -- for example, in a room full of peers trying to stay focused on an exam, for whom the visual distraction is indeed a boundary violation.
It's hard to generalize. There is no one hard and fast set of rules. But applying the general *principle* of identifying legitimate boundaries and whether those boundaries are being violated goes a long way.
Credit where credit is due: the notion of analyzing boundaries this way as a guide to distinguishing maladaptation from legitimate accommodation comes from Jim Sinclair -- the same person who wrote the essay "Don't Mourn For Us" that Juliette and I have been discussing back and forth. (You can read "Don't Mourn For Us", by the way, here.)
Thanks so much for your comments, Phil. No, you don't owe me an apology -- far from it! I didn't mean to suggest that I had taken umbrage.
You've raised some excellent points. I don't have an autistic child, so my personal reflections can only go so far here.
I'd be interested to hear what other parents of autistic kids think of Jim Sinclair's essay (thanks for providing the link, too).
Juliette
This is my first time discussing a Brain, Child article, so please let me know if I cross any unspoken community lines.
I loved the article, but as a believer in neurodiversity (for myself- I show many signs of Asperger's and as a baby one doctor said I was retarded, another autistic, and my mother also thought I might have autistic traits), the author has overlooked the part of the movement that does not so much scorn behaviour modification, but rather, scorns the idea that there is a cure, as in, that people can turn into neurotypicals.
I am thankful that my mother encouraged me to restrain my temper; to logically deduce how to interact with other people when I couldn't sense it "magically" like other people do; that she helped me learn not to obsess too much. All parents modify their children's behaviors in some way. The aim is to make it possible for the child to have the richest possible life with the least amount of pain for herself or others.
But that does not mean that one must believe that the child is somehow broken, in a "living hell" as some so-called autism "curebies" will say, or sick.
It is not so much the difference between thinking that the child needs to grow and change, or not grow and change (we all know that everyone does), as it is the difference between thinking that a child is essentially an able, whole person, and thinking that he is not.
I am also disappointed that the author failed to distinguish between people who believe, contrary to mainstream science, that autism is a result of an injury of some sort (e.g. metal poisoning from vaccines), and therefore believe that a child can be fully cured and turned into a "normal" child, and those who advocate intensive treatment for children who have neurological problems rather than just letting them continue to practice self- and other-destructive behaviours. There is an enormous different in the membership, conduct, and beliefs of these two groups, while the author lumps them all together under the term "curebies". I think that this misses a lot of nuance that exists in the online and offline debates.
Overall I did really appreciate this article and would like to thank the author for sharing her journey.
Edit: In the fifth paragraph, I wrote "able, whole person". I should have written, "whole person". I think that "able" is too ambiguous in the context. Although in some respects I would like to keep it in there I should really find a better word.
I am a dyslexic who has 3 kids who are far from neuro-typical. They are all very bright but they all learn differently. One of those children is an alphabet kid, or rather a kid whose diagnoses get listed as a string of letters following their name.
I think both camps have it wrong. A huge part of the problem is that our society, and especially our schools have become outright hostile to any child who is neurotypical. They are set up so that kids who don't think and breath in a sequential language oriented way are shunned, told they are stupid, felt inadequate, separated and constantly made to feel like they are being squeezed into some mold that they will never fit into. And this happens even if the child's LD is remediated. We have such a narrow vision of what makes a kid successful these days that we have created an Us versus Them situation. If parents of atypical students perpetuate the Us versus Them world the challenge of having our kids fit in and be successful contributing members of our society is only going to get harder.
BTW, the whole special education process only makes the "Us versus Them" situation worse. Because rather than providing an education that works and benefits all kids, we instead provide an education that only benefits the neurotypicals and make all other parents fight to get their atypical kids educated. It is a system that works to benefit a few and in this system the rich get richer and the poor get poorer. Atypical children loose out and the neurotypical children increasingly have a school system that allows them to excel above and beyond their intellectually equivalent atypical peer.
I attended an Ivy league college. At college I got to know and friend many atypical types. Looking back I suspect our group of friends from college had a whole range of diagnoses not that dissimilar to the letters that follow my son's name. The difference is today none of us would of gotten into an Ivy League School, if we even got into college at all.
My kids have been fortunate that they have benefitted from some wonderful interventions and therapies. Therapies I wish I had had when I was younger. How I would of loved to have learned strategies that would of helped me struggle less so I could focus on my strengths more.
But even with those wonderful therapies, my kids are never going to test well on standarized tests. They are never going to be high-output producing straight A types in our competitive suburban high school. Their brains think slowly and more creatively than most and to be honest creativity and slowness just don't test well.
Oops I meant to write that our schools and culture are hostile to any neuro-atypical child. Also since I am bored this evening, I figure I could clarify what I meant by this. Think about how we define success for our teens these days. Think about the what it takes to advance socially and financially in our culture. Our schools have become factories and those kids who succeed are those kids that can produce tangible, measurable results. All the rest are left to feel like they are somehow not good enough or not smart enough. Standards and years of the ineffective "No Child Left Behind" have killed education.
Our schools these days focus on output not on comprehension. And output is so important that creative kids are penalized because it is unacceptable to make mistakes. We get kids who can get the A's and score the high scores but they can't analyze material, they don't ask questions, they don't look at things from many angles and they are not interested or passionate about anything.
I had a well known educator (the director of a leading school for children with learning disabilities) tell me once that good special education is good education for ALL. So much of this artificial battle about whether a child is neurodiverse or not is artificial. If we put the art back into teaching, many of our kids might still have labels but those labels would not end up dominating their lives or the lives of us parents nearly as much.
An anthropologist I know was doing field work in Mali. Her youngest son had Down's syndrome and was home in the US with dad. While doing field work she saw a young boy with Down's syndrome, which is unusual because a child with Down's syndrome might not survive in a place like Mali if they had heart problems. She was excited and showed the mom the picture of her son explaining to her that she had a boy like her child. But the mom was perplexed. She did not understand what this white woman was saying about her son being different. The african child with Down's Syndrome was so well integrated into the community it was hard for this mother to see any similarity between her son and the photo of the white boy being shown to her. When the anthropologist figured out why the mom was not responding to the photo of the boy she found herself flooded with tears. For it dawned on her that it is our culture can be so cruel to anyone who is different.
I really appreciate all of these thoughtful comments. Mahtob, excellent point about the two schools of thought on autism etiology -- but don't you think there is considerable overlap between them? Even if autism -were- caused by some sort of neurological injury, that would not prevent its being treated with behavioral, occupational, and other therapies. In any case, I would have to do another several months' research before taking on that minefield!
In the arena of curebie-ism, researchers recently made headlines by reversing some of the symptoms of Fragile X Syndrome, the leading known genetic cause of autism, in mice. Fragile X also causes other symptoms, but I wonder if this is relevant to the "disease vs. difference" debate?
"Mahtob, excellent point about the two schools of thought on autism etiology -- but don't you think there is considerable overlap between them? Even if autism -were- caused by some sort of neurological injury, that would not prevent its being treated with behavioral, occupational, and other therapies. In any case, I would have to do another several months' research before taking on that minefield!"
I think that while most of the autism-as-injury camp are so-called "curebies", a large portion (if not a majority, then a substantial minority) of people who believe in a cure or at least significant improvement do not believe that autism is an injury. They believe that it is congenital, if not partially genetic.
I also think that there is a large movement that believes that autism and other neurological disorders or "different orders" if you prefer, are caused by aluminium or mercury in vaccines, i.e. that they are different manifestations of heavy metal poisoning. These people might not be in the majority but they are a very close-knit group and they are also very vocal and visible. They can be distinguished from people who believe simply that autism can be cured.
From what I have seen, the big problem that the neurodiversity crowd has with the former group is that, because they believe that they can prevent and cure autism, they feel that they have a responsibility to lobby their causes. And in lobbying, phrases such as "lost", "worse than death", "living hell", etc. get bandied around, presumably to drum up sympathy for the families and thus, support for the movement. Or perhaps because they do believe that autistic people are in a living hell. I'm not autistic so I can't say but I wouldn't presume to say it of someone else and I don't know any autistic people who do say that. The offensive thing here is that they presume to speak for all autistic and/or autistic spectrum disorder and/or neurologically disordered people and they say really horrible things about these conditions.
"It's like when we train American business people to do business in Japan. We teach them all they'll need to know about the cultural expectations, behavior, and mindset of their hosts, but we don't try to "cure" them of their Americanism or teach them (even implicitly) that it is disordered. Less functional in the Japanese business context, but not disordered and *not out of place back home*."
Incidentally, this reminds me of another point. People with Asperger's, if they are well-adjusted and relatively well-brought-up, which is completely possible in any loving family without any special therapy (in my opinion), are also remarkably good at working in different cultures. We have been living in a "foreign" culture all of our lives. My whole LIFE I have had to figure out everything phrase by phrase, word by word, gesture by gesture. I have also never gotten culture shock, interestingly. This is one of the things that the neurodiversity crowd wants mentioned: that we also have our gifts, which are the mirror sides of our weaknesses. It's not some special bring-on-the-rapture gift, I'm afraid, and nothing genius, either. But it is a talent, let's say. Medicating or operating away the ability to ignore culture also medicates or operates away the gift for travel and unique perspective that comes with it.
Again, it is one thing to socialize a person. It is quite another to try to make her normal.
When I first discovered my son had autism, I wanted to run into the middle of the street and scream for help. I wanted the fire trucks to come blazing down the street, for Superman to fly down from the sky and "save" him. I couldn't believe I had to just sit and wait patiently for the early intervention people to call and make our first appointment. I wanted this "autsim" to go away NOW. Well, it has been five years now, and there is obviously no magic cure. My son is an amazing, clever, funny, and compassionate child. However, if I could wave my magic wand then, yes, I would take away his anxiety, his obsessive compulsive traits, his fear of certain sensory inputs, his rigidity, the lag in his fine-motor skills, his hysterical resistance to turtlenecks and buttons and coats, and his difficulty in recounting a story about his day at school. If I could take all that away, I'd still have my boy - only without all the pain. I think it is a reasonable thing for any mother to wish for.
I was covered by the article, yet I was not sure if I was being lumped in with the sort of people (usually, as you said, teenagers) who do the "NTs suck" or "aspie supremacy" stuff.
Because that's not me, that's not who I am, and that's not what I stand for. I don't stand for "doing nothing" and neither does Michelle Dawson and neither does Jim Sinclair and neither do most of the people I have ever met.
I come from a viewpoint informed by the disability rights movement, though. This says that yes, in fact, a society is built for the strengths and weaknesses of only some sorts of people. So how do we make this society more accessible to people?
Because the disability rights movement was mostly formed by people with physical impairments, a lot of people aren't used to thinking of it in terms of cognitive disability, but there are a lot of us working to show how it fits.
I don't really consider myself as much part of a "neurodiversity movement" as a tiny branch of a larger disability rights movement. I find a lot of what I see go on in the name of neurodiversity to be hypocritical in the extreme, like "Accept me because I'm not 'retarded'." No way. If it doesn't encompass the value of and justice for all people, it ain't my movement. One of the better writers on this topic is Cal Montgomery, you can look her up at the Ragged Edge Magazine website.
I guess I'm not much for defining a position's worth on whether it's in the middle ground between two other positions or not, either.
I don't actually think the "normality sucks" attitude is more extreme. It really isn't.
The reason it's not a more extreme version of attitudes like mine, or of attitudes like Phil's, is because it's not even in the same direction that Phil or I are going.
It's off somewhere in left field, and I do not enjoy hearing that somehow the idea that a certain group of people "suck" is a more extreme version of the bid for equality that most of us are actually working for. How does some sort of person sucking become a more extreme version of wanting to be seen as equals? It makes no sense. (I'll just assume Phil hasn't thought this one through because I'm sure he'd agree with me if he had.)
So I don't think I occupy a middle ground or an extreme. I just occupy what I occupy, and what I occupy was not represented in the article despite my being quoted in it. I feel the way I always do after realizing someone has been reading me with a filter on that lets them only see what they expect to see.
*waves*
To quote a poem I wrote once...
I'm over here.
Not over there.
Here.
And, I'm not too capable of doing this right now because I just got out of the hospital and I've now got a viral infection screwing with my lymph node. But Phil? Can you find some links to stuff I've written about this on my blog, maybe? Including that one where I showed how the word "intervention" and similar things would look when used on non-disabled children? But also things that actually show my point of view which was not among those represented.
It's strange to me, too, just musing aloud here, but how some parents read me and go "oh cool" and others read me and go "you hate me" and I'm writing the same stuff... and it's not ever about hate.
Okay, I just realized after I posted that, what I think could be summed up as something close to:
You don't have to fix us in order to live a good life.
We need to learn autistic strategies for managing the world, not non-autistic ones. The strategies are different because our brains are different and process information differently.
Education isn't "fixing" us any more than education "fixes" any other person.
I believe everything about autistic people that most people (including me) believe about non-autistic people when it comes to raising children. It's just that the shape is different so you have to do things differently.
And somehow when we do something to a non-autistic child it's just "raising the child" but suddenly doing it to an autistic child is "therapy".
You have to understand our objection to "therapy" in those terms -- many of us object to the medicalization of teaching our sort of people. Teaching is not a medical process even if it's done by a speech pathologist. It's a learning process like any education.
And the other thing is, never, ever take form over function.
There are a million ways to do the same thing.
Autistic ways won't look like non-autistic ways.
Find the best route to doing the same thing, accomplishing the same thing, rather than finding the most usual route to doing the same thing.
But, of course, words get twisted and eventually you'll hear some people claiming we hate everyone non-autistic, which aside from a few is really not the case at all.
Dear Juliette,
I am 33, and was very much like you daughter Aurora as a girl. The only difference is that I was sufficiently able to compensate for my dyslexia to do well academically. But I (and my life) have suffered terribly due to poor coordination, difficulty reading people, poor rhythm, and horrible handwriting. I've had a hard life because of it, until recently.
Now I no longer fit the defintions of dyslexic(severe), dyspraxic(very severe), ADD(mild) and auditory processing disorder (super-extreme). Because I at least did well academically, the layers of denial, of my hiding the problem (I was very good for many years), and blaming other factors (sexism, bad luck, grim economy) for my difficulties in life.
I found another path, besides accepting these disorders or the conventional medical model.
At the age of 31, my life was at the nadir point, and I discovered by chance that hidden behind the shelf of typically ineffective "alternative remedies" such as fish oils, antioxidants, gluten-free diets, additve free diets, accupressure and so forth, lies a FEAST of treatments that involve retraining the brain-and that really do work.
I know that you tried a host of "alternative remedies" but have you ever contacted the Institute for Neurophysical Psychology (INPP) about Aurora?
Probably not. First of all it is virtually unheard of in the United States, even among very avante-garde and "alternative" people. (But well respect in Britain. In the US several Optometrists in particular are starting to embrace it.) Secondly the timeframe described in your article suggests that Aurora has not gone through the program (which usually takes over a year for people who are very impaired).
You might feel that I'm giving you a pitch for a new program, after you tried all sorts of desperate things. And I would fully emphasize having seen a lot of baloney cures for this (and having been approached with all kinds of baloney cures for my hypothyroidism).
But I an nearing the end of the INPP's program, and have also undergone an auditory training program at their recommendation. And it has changed my life beyond on all reckoning.
I don't feel spacy anymore. I no longer envy even Nixon's level of physical grace. I can understand what people around me say and read faces. I know longer have a hard time focusing on job applications and dry reading.
First Juliette, you might want to start with the INPP website and see if Aurora looks like a canidate for NDD (they have a rule of thumb questionairre), and they will explain how inappropriate reflex develop is frequently an underlying cause of ADD, dyslexia, coordination issues/dyspraxia, auditory processing disorder, adult anxiety disorder, and at least in some cases contributes to a host of other problems.
http://www.inpp.org.uk/
And if you daughter is not a canidate for the INPP program, the she can likely be helped by HANDLE (or maybe both). Since she has an auditory processing disorder she is almost certainly a canidate for various listening programs (not the "work around it" education most schools provide) such as TLP, Tomatis, Samonas, or other methodologies.
Since she has ADD, auditory, and coordination issues, she is almost certainly a canidate for "Interactive Metronome": A superb tool for teaching the brain to develop new pathways and new ways of doing things.
Unfortunately, most diagnosticians will tell you nothing about these methods, but plenty of professionals (good professionals not the fly-by-night TV docs you see behind so many fish oil/snake oil kinds of cures) are starting to get on board.
If you want to talk to me some more, I think you will see my e-mail. However, I've given you websites enough to start learning about these new methods.
Good Luck!!!
Dear Juliette,
I forgot some important information!!
Although, the INPP website only talks about finding help in Britain, there ARE a growing number of practitioners being trained in the United States.
To do the INPP program, you only need to see the practitioner once every two months or so.
If Aurora is a candidate (very, likely based on your article) the excercises would take only ten minutes, but must be done every single day.
You only need to see the practitioners in order to update the excercises. I take the Amtrak train from Oregon to Santa Rosa California every few months, and am hoping to be finished by my next visit. (There may be more practitioners on the West Coast now.)
I know this may be a tall order. But if your girl is a canidate and improper reflex development is a key reason for her processing disorders, it will be so worth it!!
I did it and can't express how much it changed me!
My son was diagnosed by 4 specialists (we wanted to make sure?) with ADHD with high impulsivity. My son came home from school nearly every day for 3 years crying because “no one likes me” or “I have no friends.” Birthday party invitations stopped coming in about the 3rd grade. He has no learning disabilities and takes tests well but his grades were poor because he couldn’t follow through or stay focused. My heart was breaking (and still does sometimes) for him. We tried behavior modification, modified diet, group therapy, etc. before resorting to medication. Luckily, the small Catholic school he attended embraced behavior mod. techniques and found them useful for many children. Once he started on the medications he began employing the techniques he had evidently absorbed but been unable to slow down enough to apply. His father was afraid that he would turn into a zombie with no personality. Trust me, he never lost his quirky personality but now he can often employ it to his advantage. Medication was no silver bullet and not for everyone, but at least he was able to slow down enough to think things through before he speaks so he doesn’t get in trouble with his peers and his grades improved greatly. He came home happy more often than not and that alone was worth it. He is now 16 and attempting to get into the Naval academy but to do this he must be off the medication for 12 months so it is a big challenge for him, he struggles constantly but is now highly motivated and now believes in his abilities, he believes that he is smart enough, not lazy or stupid. Without the help of the medication I don’t think he would be able to stand up now and say “I can do this.”
Am I making him conform or fit in? To some degree I guess I am, but trust me when I tell you that my son still marches to a different beat but now he has a choice of how and when to listen to that different beat. If anything I think his world has been expanded, he has the ability to fit into the box when he wants to, something not possible before. Now he has choices and is able to make his choices from a place of understanding and experience. Before the medications he had little of no controls and therefore the choices were also beyond his control. Think about what will provide your child with the ability to control his life for himself for the long haul. Every child will have a unique path to follow, just help them get to the path that will work for them, which may not be the path you want it to be.
To Pacman's Mom,
ADD kids are very often good canidates for the INPP proglram. (It only takes ten minutes a day!!)
Very often the reason a child has ADD, is because of a specifically retained reflex called the STNR. In babies, it is this reflex which makes them get up and crawl. But in an older kid who retains it the result if impulisivity, inability to focus, and often poor handwriting, or poor coordination.
Behavior modification might teach a child strategies for dealing with these problems, but it won't get the the root of them.
Similarly diet may help if a child has these problems as a result of food sensitivity rather than inappropriate reflex development, or if a food sensitivity or certain additives are compounding these developmental issues. But what a kid eats won't change the core problem.
Medication can make it easier for the child to cope, but withouth the correct intervention the developmental glitch will remain.
As an adult who has had the INPP program as an adult, I can tell you that the idea such programs rob a person's individuality is nonsense.
I think a lot of what drives the neurodiversity crowd is that they are so sick of having to work so hard for such mediocre payoffs.
I just want to thank Juliette for writing this article. Reading this has helped me fully embrace my son's autism. Him having Asperger's and me realizing I have mild Asperger's. I have done the sensory dance with him since the day he was born, and now at two and a half I have something to fully embrace to help him unfold as the person he is created to be and with a community to help offer me healthy coping skills for his unique needs and challenges. All of my own "unique" needs and challenges finally have a cohesive theme and a lot is falling into place for me, too.
Thank you.
Juliette
Great article--I read it slowly so I could be sure to take it all in. Thanks for all that time-consuming research.
I have a cheerful, developmentally delayed 5-year-old that has taught me so much, esp. not to judge others and to accept learning differences whole heartedly.
My first son was all by the book--no learning/social issues at all, and I found myself thinking sometime: Why doesn't that parent just do THIS; or, I would NEVER allow that!
Well, guess what? My tolerance level is very different now. And I have my little guy to thank for opening my eyes.
I do not want to fix him at all--never even a thought that entered my mind, but I do want to help him be the best person he can be. So we've got all kinds of free services from our county's intermediate unit helping us. It's a slow process, and that's okay, 'cause we have a life-time here.
You mentioned a problem with hand writing and I want to suggest a hands-on program that is really pretty cool:
http://www.hwtears.com/
more specifically The Wood Pieces Set--
Thanks again for your time and energy spent on this piece. You offered so many POVs and quoted varied specialists that the reader can really form an intelligent opinion walking away from your story.
Margaret
I want to add my thanks for this article and to the people who have commented on the article. I am having difficulty thinking of my son as "having a disability" and go back and forth between denial and wanting to get help for my son. At first glance my son does not appear to have a disability - he just appears bright and Naughty. Gut-wrenchingly, embarassingly naughty. I get the impression that most people think he behaves this way because I am a horrible mother. My self-esteem is plummeting and if MINE is plummeting, what about my son? As much as I want the world to change so that he is more accepted just how he is, the reality is that the world won't change in time for his developing self-esteem not to receive a walloping. And, bottom-line, his biting people has gotta stop.
He has been tentatively diagnosed as bi-polar, depressed, ADHD, twice exceptional, blah, blah blah. What route do I take when he starts kindergarten? Do I go ahead with special education services or will that stigmatize him (he has already been called Ä SPED" by a school official) Do we consider drugs or will the side effects be too much? Do we opt out of public education and send him to a school that is outdoor based (and too expensive for us) and hope for the curative powers of the outdoors?
As you can tell, the article comes at a key time for me. I hope that as more people comment (such as PACman's mom-her comment really gave me something to think about) I will be able to use their insights to help me feel better about our decisions.
Erin,
Hi, I hear what you are saying about your son. I too had a son with a similar profile many years ago. He is now a lovely 17 year old man.
I read your post and I want to recommend that you visit the Child and Adolescent Bipolar Foundation Message Boards and particulary the message board for Complementary and Alternative Treatments. There you might find that me and other members might just have some answers to the questions you are asking.
I hope we see you over there.
oops I forgot to post the web link
http://www.bpkids.org
Hi...
Just thought I'd mention that this discussion is showing up when one clicks on the discussion link for the new article, "Outbound." Maybe somebody in the know can fix it :)
I am the mom of an 11 year old Asperger's son. He spends a fair amount of time wishing, hoping, trying to be "Normal".
The last thing I want for my beautiful, intelligent, talented boy is to spend his life wishing for something unobtainable and undefined!
He will do great things if he follows his true self and I would hate for him to lose that future and in place spend endless hours contemplating how to be "normal".
Unfortunately, society in general doesn't share my idealistic view point and it frustrates me to no end.
Tolerance!
Teach tolerance and maybe we won't need to spend so much time trying to "cure" what shouldn't need curing.
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Happy Holidays! My name is Lisa Hope and I am the assistant editor of Disorder.org. I am contacting you today in hopes of developing a strategic partnership with your website; we have seen your site and think your content is great. Disorder.org is an online gateway for people to find information regarding disorder diagnosis, symptoms, and treatment -- and is continually adding content. If you're interested in a partnership, please contact me at lisa.disorder.org@gmail.com.
My daughter has been undergoing intensive therapy for the last two years with little results. We decided to take a month off over Christmas and guess what, she has become much more happier and relaxed and is now making much more eye contact. I mean the changes are significant. This has made me completely reassess her therapy program for this year. I'm going to start focusing on just having fun and being her Mum rather then her therapist and only stick with the therapists needed for her physical well-being (physio for her toe walking). My daughter is a beautiful, unique little girl and I love her for who she is. For anyone who is interested I've kept a blog on my daughter's progress over the last two years at http://skyegurtner.blogspot.com/
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