My Life With Asperger's

I'm appalled at the level of inaccuracy in this essay, and the utterly poor understanding John Elder Robison has of the issues he purports to discuss. John's extremely irresponsible writing does an extreme disservice to the entire Autistic community.

This is one the most thoughtful, considerate and brave posts I have read on this oh-so-touchy subject.

One one side, parents are freaked out and are just looking to help their kid. On the other is HF autistic folks who deserve to be accepted just the way they are

Your thoughts about focusing on the individual issues for an autistic person; ie" speech, behavioral, dietary/allergies, would go a long way to bringing the too sides together.

Thank you for your balanced take on this issue.

Keep up the good work.

It seems to me that pointing out the issues that are divisive for many on the autism spectrum is not a bad thing to do, just pointing out a reality.

And yet, you don't have any interest in contributing to any of the self advocacy groups already out there, but would rather complain from the sidelines?

Is that because, well, I see you have a book out; you're already 'set' then in regards to being able to be a 'voice' for Autism?

Why not contribute and be a part of the self-advocacy networks out there, instead of complaining from the sidelines?

The "solution" suggested here is for one side to accept the position of the other side - to stop trying to find a cure. This is the point of view advocated by the HFA/Aspergers end of the spectrum. It is not the point of view of parents of autistic children generally, although there are exceptions. And it is certainly not the point of view of parents, like myself, who has a son with Autistic Disorder and who is assessed with profound developmental delays.

As an autism advocate for the past 11 years in New Brunswick, and a practicing lawyer, I can say from direct observation that there are many persons with Autistic Disorder, severe or Low Functioning Autism, for whom the future means life in institutional care. Of course some of these don't make it that far, they wander off into traffic or drown. Many autistic children and adults with actual Autistic Disorder also have serious intellectual deficits which limit their understanding of the world and their ability to participate in it.

JER does not speak for my severely autistic son with his "solution". I speak for my son and if the research is ever done, to find a cure and such a cure is found I would want it for my son. And THAT is none of JER's business. I have no right to tell him or anyone with HFA/Aspergers that they should be cured. They have no right to tell me as the representative for my son that he SHOULD NOT be cured.

If JER and the anti-cure autism movement would keep their nose out of the affairs of families with autistic children and asserted the right they already have ... the right for them not to be cured .... the conflict would be over.

That is my recommendation to JER. Please consider it seriously and stop interfering in the lives of families with autistic children.

Harold, I'm not sure where you're coming from. Autism is the overarching word for a brain difference which manifests itself in many different ways. At this moment, the current state of science suggests that some people come by this difference via natural process and evolution (a stable situation) where others may come by it via some unknown causative agent.

I'm in favor of finding any causitive agents for the latter kind of autism. I am sorry if I failed to make that clear. It may be a hard long hunt but I'm behind that idea 100%.

In the case of naturally occurring autism, there is nothing to cure, any more than red hair is curable. That said, red hair is not a disability where not being able to talk is.

I am absolutely in favor of finding ways to fix or remediate the disability components of autism, for any who are affected and wish to be helped. I thought my post was clear on that.

JER your post was clear. Perhaps my comment was not. I understood your comment. I respectfully disagree with your position.

You are making a false distinction between the disability components of autism and autism itself as a disability. Autism is a disability. It was on that ground of autism as a disability that Michelle Dawson was successful in a Human Rights compliant in Dawson v. Canada Post Corporation, 2008 CHRT 41 (CanLII)

http://www.canlii.org/en/ca/chrt/doc/2008/2008chrt41/2008chrt41.pdf

In that decision you will find a `Dr. M who testified as an expert witness that `the notion of curing autism is nonsensical, according to the CHRT summary of his evidence. No explanation and no scientific basis was provided for that evidence by the unidentified expert. But Ms Dawson brought her autism based Human Rights complaint on the ground of disability and was successful in part.

i work in education and use developmental programmes to reduce difficulties for children whatever the label. I do not cure people with autism but can help integrate primary reflexes which in turn allows the individual to accept change, different foods, textures etc. I use The Listening training Programme from ABT to help them with auditory discrimination and shutting out extraneous noise.
Getting rid of some of the difficulties allows us to work on what is left, whilst the individual is better able to cope in the world because of reduction of difficulties.
No cure as a whole but reducing some of the problems for the benefit of all

Bold,moody,thought provoking and as always... fun to read.

Sincerely,David

JER: Almost all the parents I know who are using the DAN!/biomed approach to a cure are parents of children with Asperger's Syndrome. While most of us imagine it's the desperate parents of the severely autistic (the nonverbal kids with extreme self-injurious behaviors) who try anything for a cure, there are a great many parents out there hoping to get the Asperger's out of their young child. This is based on the widely-held belief that there is a "normal" child in there somewhere, and the "normal" can and will return if the child is detoxified. I think this reality is generally absent from the discussion of cure. For example, would you want to try to cure a child who is severely autistic and harming himself daily? Maybe so. Would you want to try to cure a child who may be brilliant but is quirky and difficult? Many, many parents I know say yes to that second question. To me that looks like a quest for perfection rather than concern for a child.

"as one characteristic of our condition is an inability to put oneself in another person's shoes"

This is a sophomore interpretation of the scientific facts. It is untrue in any kind of reasonable colloquial sense and you deserve to be hung out to dry for this Slander alone.

And shame on Psychology Today for allowing it to be published.

OK, Socrates, so I should be hung out to dry. If that's the case, what do YOU propose be done to achieve some kind of unity among advocacy organizations? Or do you believe that's pointless?

The various advocacy groups - AS being the biggest - probably rake in close to $100 million per year with AS accounting for half that. That kind of money could give us (the AS population) some significant muscle if we could join together with some common purpose.

It's hard for me to overlook the potential in that.

Do you have some ideas to achieve some kind of harmony or community? Clearly mine don't work for you.

How is spreading harmful misinformation going to bring about unity?

I do not wish to achieve any kind of unity whatsoever, with an organisation such as Autism Speaks, who have as a board member Alfonso Cuarón - man whom has seen fit to publicly support a paedophilic rapist and in doing so, seeks to aid his avoidance of Justice.

You want me to unite with people that would insist a stranger moved in behind my face, before granting me status as a fully paid up member of the human race?

Autism Speaks wishes to see a world without people like me - they have chosen to lay out a battle ground - not seek common ground.

The time for unity is when the fighting is done and Articles of unconditional surrender have been signed.

This is the Age of Autism - this is a time of war.

Now stop waving your freshly laundered handkerchief at the Stormtroopers, and fight like a Man.

I'm presently in the midst of re-writing a feature-length screenplay with ASD at it's focus. I've also read (and re-read) John's book with much delight, gripping it ragged through a trip to Australia. The reason for the re-write; Through my research, I have found that you cannot find one singular voice for ASD, there are many divergent voices. The HI are eager for anything that can improve their situation, and hold blame to a multiple of issues. The HF are disenchanted that they have to even endure such a label that includes those in a debilitating and HI category. Every person in the spectrum is reaching for their next rung on the mainstream ladder. So I found that I need to show all voices, all perspectives, and all aspects of what is a wide spectrum. They are all different, with one small thread of commonality that has yet to be embraced cohesively. I don't have the answer, but I hope for the best, as it is an newer, and evolving science that just twenty years ago had non-verbal autism written off as marginally MR. My cousin had this incorrect label attached to her, long before the spectrum was discussed. I think the next twenty years holds much promise, as discovery is made. What we are not aware of now, will change us later. FM.

John - while I don't agree with all your points I think it is a wonderful start. IT is Amercia (the last time I looked) and we are all entitled to state our own opinions. I applaud you for stating yours.

The autism community is anything but a community it is fractured and painfully unorganized. Until there is organization no goal will be accomplished. The comments already posted demonstrated the devisive nature and comes from less than 10 people! Yikes.

In the meantime the US Government just came out with the numbers of 1 in 91 are affected. If all of these cases were like you John - I would be nothing but supportive. I would treasure the differences. I would smile and move on as each person is unique.

The problem is many of the cases (not all) under of the age of 17 suffer great impairments. When their parents die, these children will not be adored for their differences they will be institutionalized. I do not want this outcome for anyone. Certainly I don't want that for my beloved child who is on the autism spectrum.

I think the point is this: rather than argue amongst ourselves why not just support our own "camps." If there were 2 or 3 camps it is certainly better than 2,500.

For those who think they are different and great - I applaud you. My son does not have the ability to communicate this. He suffers from many issues. My hope for him is an independent, healthy future - not the current reality he has. I cannot fathom why parents should receive any criticism for wanting a healthy, independent future. That is what baffles me and this opinion is not from you John. Thanks for writing a thought provoking post.

(and I am keeping my name anonymous as a parent of a child on the spectrum not needing another battle of ND's who think they are fabulous therefore everyone like them is as well. It is annoying that these folks desire to intrude on my desire to make a healthy independent child. The same goal for his typical sister - who is healthy and independent.)

John - while I don't agree with all your points I think it is a wonderful start. IT is Amercia (the last time I looked) and we are all entitled to state our own opinions. I applaud you for stating yours.

The autism community is anything but a community it is fractured and painfully unorganized. Until there is organization no goal will be accomplished. The comments already posted demonstrated the devisive nature and comes from less than 10 people! Yikes.

In the meantime the US Government just came out with the numbers of 1 in 91 are affected. If all of these cases were like you John - I would be nothing but supportive. I would treasure the differences. I would smile and move on as each person is unique.

The problem is many of the cases (not all) under of the age of 17 suffer great impairments. When their parents die, these children will not be adored for their differences they will be institutionalized. I do not want this outcome for anyone. Certainly I don't want that for my beloved child who is on the autism spectrum.

I think the point is this: rather than argue amongst ourselves why not just support our own "camps." If there were 2 or 3 camps it is certainly better than 2,500.

For those who think they are different and great - I applaud you. My son does not have the ability to communicate this. He suffers from many issues. My hope for him is an independent, healthy future - not the current reality he has. I cannot fathom why parents should receive any criticism for wanting a healthy, independent future. That is what baffles me and this opinion is not from you John. Thanks for writing a thought provoking post.

(and I am keeping my name anonymous as a parent of a child on the spectrum not needing another battle of ND's who think they are fabulous therefore everyone like them is as well. It is annoying that these folks desire to intrude on my desire to make a healthy independent child. The same goal for his typical sister - who is healthy and independent.)

Folks, I can find things to agree with in each post, however, I feel strongly that some other issues need to be factored in here:

I want to address each of these points - I feel OBLIGED to put them out there.
1) What is the effect ON THE CHILD/LOVED ONE of advocating for a cure?
I have learned never to underestimate what my son understands of my conversations, he has schooled me on that! When people say and advocate that autism must be cured at all costs, how awful it is for their family - they are either assuming that their child CANNOT understand that their parents view them as unacceptable because of their autism, or they DON'T CARE if the child draws that conclusion.
Can't you put yourself in the child's shoes, JUST IN CASE they understand?

2) Are you sure that it is THEIR happiness/well-being you care about or is it really ALL ABOUT YOU - YOUR "cruelly dashed dreams"... of having grandkids, of seeing your child graduate, of your Ozzie and Harriet neighborhood where everyone is "above average"?
Honestly, when I read so many (not all) posts by other parents, they just scream ME, ME, ME, oh POOR ME. Very little about the child's own life experience. Are they really suffering because of their autism, or because of the things you/society are forcing them to do/endure? If left to stim, compute, game, read, whatever floats their boat, enough of the time, they are pretty happy, fun people. My son is seldom unhappy except when I am trying to make him act "NT". Even then, if he has had sufficient time to script and play with his Thomas trains, he is pretty cooperative about trying to fit in. He is 11.
AT LEAST ask yourself if you can honestly say it isn't about YOU.

3) One poster referred to how society will treat their child when they are gone, hypothesizing institutionalization as a worst case... Hasn't anyone considered that it isn't so much the autist/aspie who needs to be cured, but the rest of society's view of them, and all people with differences/disabilities?
Even if we cure autism, why should the general public be allowed to pity, abuse, look down on ANYBODY? Down syndrome kids, deaf, blind, CP, cleft palate, plain-old-funny-looking! There is no such thing as NORMAL! The sooner we - as a species - get over that, the happier we will be. We are all just temporarily-abled.

4) Even those of you on the spectrum are disparaging people with "impaired cognition"!!!!! What is so flipping special about an IQ number? Many of your comments seem to imply that having no language, severe behaviors, etc should all be accommodated/allowed AS LONG AS THE PERSON IS SMART (to whatever extent YOU feel is minimal).
Why is intelligence viewed as the final criteria for human-ness? Why does a child with a 70 IQ merit support and compassion and a job, etc., but my son, maybe not, because he can only muster a 65, or DEFINITELY NOT that other kid down the block who doesn't even score at basal on the standardized instruments! Gotta distance ourselves, that poor bum has nothing in common with ME, I am a brilliant Aspergian!
If I had a nickel for everytime I have heard people say things like, "the poor kid's quadriplegic, no motor control, no language, will never be potty trained, BUT AT LEAST HE IS SMART!! You should see him type-talk and he can calculate the circumference of Jupiter's moon."

EVERYONE is valuable, EVERYONE deserves to be loved unconditionally.

wow -that made me feel better. ok, not really. I should live so long!

John,

First, as I understand it, HF autistics are not the only ones advocating for acceptance and accommodation over a cure. LF autistics do, too.

Second, while I would not use the language Socrates chose, I would agree that it is inappropriate and counter-productive to spread misinformation regarding what autism is and is not. Autistics can be just as empathic as anyone else (or not, just like anyone else), but may pick up on different cues or communicate their empathy in different ways. Their interpretations or responses may not always be "socially acceptable," but that does not mean they are unable.

Third, the advocacy groups that you lump together as being about autism do not share the same fundamental goals, and therefore are unlikely to ever be united. Not everyone who is interested in autism is interested in the well-being of autistic individuals. These different goals and different agendas cannot be aligned without one group or the other changing their objectives.

As the mother of three children with autism with very different levels of skill, I don't see autism as being represented by a single experience. And I do not see my children as the full spectrum of autism. But I can tell you that each of my children and all people with autism are human beings. There are people who see autism as something that takes away their humanity and "sucks" out the their souls. As a parent of autistic children and an advocate for neurodiversity, I cannot and will not be unified with people who do not recognize the inherent, unalienable humanity of my children.

There can be no unity as long as there are advocacy groups that regard autistics as things they can dispose of or meddle with however they wish.

Thanks for the interesting article. My son with Asperger's said, "if I could re-program my brain, I wouldn't be as smart, but I would have less worries." The question is, would he really choose to re-program his brain, if the possibility existed?

I read recently that the DSM-V might eliminate PDD-NOS and Asperger's and call everything mild/moderate/severe autism. It seems to me that instead they should separate high and low functioning into two entirely separate disorders; it is no wonder that nobody can agree. My son is diagnosed as mild to moderately affected; basically his impairments are anxiety, sensory issues, and seeming odd and boring to NTs. I expect him to have a difficult time trying to fit in at school, to take longer to reach any developmental milestones or to achieve independence, to have trouble getting/keeping jobs and to have relationship difficulties due to social skills deficits. But I would never presume to understand the feelings of those who are (or their kids are) nonverbal, violent, institutionalized, cut off from the world entirely or otherwise severely impaired.

This is unfortunate since it really gets in the way of any progress; messages to increase awareness and promote acceptance are muddled by infighting, and I heard recently about medical research that was stalled because autism was considered such a hot potato. It is hard to take any stand without being flamed either way.

While I applaud the DSM-V committee for their efforts to further define the distinctions of members of the autistic community, I remain concerned about how it will actually fall out. I can be high-functioning on some days, moderate functioning on others, and while I don't think of myself as low functioning, it could be considered that on the days I cannot even begin to get out of bed, let alone eat, bathe or talk on the phone. I'd have to have a daily test to determine my "functioning of the moment."

As long as supports are in place, proper diet, sleep, work, medication, I can spend most days as high functioning, maybe even "super" functioning. But change and loss of supports can bring chaos.

As for JER's article, John, I think you agree far more with the Self-Advocacy groups than you might think. All the ones I know, ASAN in particular, believe EXACTLY as you do, that the difficult symptoms of autism should be supported, and yes, indeed cured, but not autism itself, which is a way of being.

Thanks for listening, ya'll.

I agree that the direction should be find therapies that work for specific symptoms on the continuum, rather than a "cure all" therapy. Probably more effort should be directed at low functioning individuals.

frightening — not the post, but the comments. And yet, I can understand how everyone feels so passionate individually. This debate seems to be clearly infested by either side's conviction that the other side is not merely incorrect, but somehow morally so. perhaps the debate would benefit from some good faith. I'm sure it's not that easy.

I'll say, though, my wife was diagnosed with asperger's at 22 - last year - and although her IQ is 130, she laughs about the common brand people give her of "high functioning." "High Functioning my ass!" she jokes. She's one of the approximately 20% of Aspies who is also anorexic, she was self injurious through her teenage years, she's suffering organ failure from her eating disorder now, and she's now in her 6th year of attempting to get through her undergraduate degree (she tends to drop classes as she gets to uncomfortable to attend, or has a panic attack in class and gets horribly embarrassed to return) and is just a sophomore. She had one friend for several years growing up, and then me. And yet, despite what is from pretty much most accounts low functioning, she does disagree with the Cure people. She says, "I don't want to be like everyone else — that's crazy. No, everyone should be like me." She's quite witty.

This is just to say...it's all rather complicated, isn't it? I mean, some of the behaviors my wife exhibits, like anorexia for example, are the sort that have for a long time presented our society with major ethical questions about personal choice. Is it OK for my wife to be the way she is?

I think the answer is definitely NOT yelling at people who try to bridge the gap, like the author of this post.

frightening — not the post, but the comments. And yet, I can understand how everyone feels so passionate individually. This debate seems to be clearly infested by either side's conviction that the other side is not merely incorrect, but somehow morally so. perhaps the debate would benefit from some good faith. I'm sure it's not that easy.

I'll say, though, my wife was diagnosed with asperger's at 22 - last year - and although her IQ is 130, she laughs about the common brand people give her of "high functioning." "High Functioning my ass!" she jokes. She's one of the approximately 20% of Aspies who is also anorexic, she was self injurious through her teenage years, she's suffering organ failure from her eating disorder now, and she's now in her 6th year of attempting to get through her undergraduate degree (she tends to drop classes as she gets to uncomfortable to attend, or has a panic attack in class and gets horribly embarrassed to return) and is just a sophomore. She had one friend for several years growing up, and then me. And yet, despite what is from pretty much most accounts low functioning, she does disagree with the Cure people. She says, "I don't want to be like everyone else — that's crazy. No, everyone should be like me." She's quite witty.

This is just to say...it's all rather complicated, isn't it? I mean, some of the behaviors my wife exhibits, like anorexia for example, are the sort that have for a long time presented our society with major ethical questions about personal choice. Is it OK for my wife to be the way she is?

I think the answer is definitely NOT yelling at people who try to bridge the gap, like the author of this post.