It is a fact of the economics of human nature that charitable organizations must first elicit pity before that can solicit money. Autism charities looking to raise funds for research into the cause and cure have produced, among other works, documentary-style films highlighting the worst aspects of autism; with loud, chaotic scenes of autistic children screaming, running around in circles, and throwing tantrums, intercut with shots of mothers tearfully telling the camera how difficult and hopeless their lives are. Indeed, raising autistic children presents many challenges that the parents of neurotypical children could not possibly imagine, but it never has to be anywhere near as awful as it is portrayed in these docu-melodramas.
These short movies may raise a lot of money, but they can be very troubling to watch for parents whose autistic children were only just recently diagnosed. A few parents have reported setbacks in their adjustment and coping processes after having viewed these short films.
Some neurodiversity advocates have asserted that these materials are partly to blame when parents are misled into subjecting their autistic children to questionable autism "treatments," because these promotional devices depict autistics as "unpersons," whose caregivers could ostensibly be considered exempt from ethical questions about conducting medical experiments upon live human children. A few autistics have expressed that they view autism fundraising collaterals as hateful "autism-phobic" propaganda that features cruel stereotypes, bigoted mischaracterizations, and the specter of eugenics.
The worst part of all this, for those who wish to help autistic people and their families to cope, rather than making people terrified of autism and autistic people, is that the very large autism charities have celebrity endorsements that get far more media attention and airtime for their pernicious point of view than actual autistic people who frequently articulate that "autism cure charities" do not represent, or speak for, them.
Autism Awareness
April is Autism Awareness Month and I hope that I have made some folks aware that there is a lot more to autism and autistic people than some old Dustin Hoffman movie, and those awful PSAs with the scary statistics (by the way, 1 in 166 is less than 0.5%). There are real people behind those numbers and they do not care for the way autism and autistic people are inaccurately depicted in the media, and how the only autism organizations that are well-known to people outside of the autistic community are charities that don't appear to be very helpful to autistic people.
The politics of autism will, of course, continue to remain divided as long as con artists and conspiracy theorists can keep long-dead scientific hypotheses alive in the imaginations of families who have experienced great difficulty coming to terms with autism as a part of their lives.
Article comments
— go to most recent comments1 - mcewen
A very interesting summary of many of the pertinent issues that face the autism 'community.'
I will watch with interest, to see the views of your commentators, to try and achieve a wider perspective myself.
Best wishes
2 - James
Well done.
3 - Ms. Clark
Not bad for a retired stripper. :-)
Thank you. I think this is a nice summary of the situation.
4 - Dawn
That was incredibly comprehensive and as usual, extremely well-written.
So far, both of my children exhibit what you call neuro-typical behavior, but really, what is that?
Within their "normal" modes of operation, both of my children exhibit behavior at any given time that I find abnormal, or from my perspective "unacceptable."
I worry at times that the extremes in either of them are some sort of defect. But as time progresses, what I think I am seeing are my own neurotic behavior in its most raw and uninhibited form without years of discipline, sometimes punishment and certainly a growing self-awareness to curb these actions.
In essence, I think my point is how do really know what is or is not normal in a child, when children come in every combination of strangeness in the rainbow and it seems our job is to mold them into some kind of conforming robot?
I think both of my kids are a little nuts to be honest. But totally awesome!
5 - Ginger Taylor
I think that the disclaimer should be listed at the top of this article rather than the bottom.
It is extremely biased Op Ed piece presented as an article.
Ginger Taylor...
An "extremist" whose son stopped talking after vaccination and now talks after feeding him "snake oil"
6 - Prometheus
As a counterpoint to Ginger, I am related to a young lad who also lost his language and regressed into autism following his 15 month vaccinations. He has also "recovered" speech and social interactions, but without the use of "snake oil", chelation, etc.
The problem with anecdotes is that they can always be trumped.
Prometheus
7 - Kev Leitch
I would hope Ginger would pass on her sage advice to the writers at places such as The American Chronicle.
Thanks for a great read Margaret.
8 - GrammaKnows
No "neurological damage" like from mercury poisoning?
That explains why my grandson, after 6 months of massage and supplements to repair nerve damage stopped sitting in the open freezer door, scratched his first itch, and decides on his own that he needs a jacket when its cool outside. Before we treated his metal levels and neuropathy, a two inch splinter in his foot didn't bring a tear and he would insist on undressing and trying to jump in the pool in 40 degree weather.
My 32 yr old son (Aspergers) told me the only thing he ever wanted was to be "normal"... to be able to go food shopping without tics brought on by fluorescent lights, to remember what he reads when it isn't in his small realm of "favorites", to make eye contact with a girl he really cares for, to know how to dress based on the temperature, to be able to eat in a restaurant.
The flapping and spinning may not be so endearing when you are 65, your child is 45 and there is no one to tie his shoes or a residential facility with room.
GrammaKnows
9 - Margaret Romao Toigo
Thank you all for commenting -- even the criticisms are welcome because one cannot ever hope to attain distinction without a few detractors.
As for all of your thoughtful questions, I will get to them soon.
10 - Leslie Feldman
I want to point out that the extreme reaction to vaccinations that many autistic children experience could be because severe autism and PDD are ultimate autoimmune disorders. People with SLE/Lupus experience severe flares after some vaccinations. I believe that a great deal of sporadic autism is related to advancing paternal age 33 and beyond. Research has found older fathers over and over again in relation to autistic and schizophrenic people. My web site gathers the autism research related to autoimmunity, to paternal age, to possible X-linked older maternal grandfathers, etc. Autism is not one thing. The tiny copy number variations seen in the DNA of some autistic children during inspection by the micro array technolgy in the Cold Spring Harbor Laboratory study, published March 15th in "Science Express" probably also appear in the sperm making cells and some sperm of their fathers. I would urge everyone to learn the truth about the male biological clock: advancing paternal age and human genetic disease/disorders. I also suggest that young men cryobank sperm for any fathering of babies past 32 or 33. These ages are approximate. I would urge that older men not father babies. I do not find that the autism charities are at all interested in informing anyone about the scientific research on paternal age. Even Huntington's chorea can be produced de novo by an older father.
11 - Phil Schwarz
Margaret,
This is a beautiful, eloquent article.
You expose and dissect many foregone conclusions and bits of "conventional wisdom".
There's one, though, that you left unchallenged: "It is a fact of the economics of human nature that charitable organizations must first elicit pity before that can solicit money."
I think we should set out to prove that one wrong.
What if, instead of "Autism Every Day" and "Getting the Word Out", we had public relations collateral that eloquently illustrated the "make or break" difference that the right kind of help, advocacy, and support can have, in the lives that autistic people lead?
The difference between lesser and greater autonomy in personal living situation; the difference between unemployment and employment, or between underemployment and valued, enriching work. The difference between childhood educational and developmental outcomes that are dead-ended, and those that open further doors.
"With your help, they can succeed."
That's not pity. It's practical, sound investment. And I really do think that it can be effectively marketed to sell.
-- Phil, AS father of an autistic son and a daughter in the broader phenotype, married to their loving and patient nonautistic mom
12 - Zaecus
Excellent article.
"I would urge that older men not father babies."
Leslie, do you still claim that you're not advocating eugenics, specifically in this case, selective breeding?
I, personally, would urge teenagers not to father babies, that seeming to be the far more irresponsible situation.
13 - planet of the humans
High Functioning Autism is a super-power, not a disability.
I make my living as a Programmer, and in my field to be any good, to be able to talk to a machine better than you can a human being, it really helps to have a touch of autism. Many of the best in my field are high functioning autistics.
14 - vsheehan
What about the kids who do not have an amazing gift that could pay the rent? What about the kids who can not control their emotions and are suffering for that? Where is the amazing gift of neurodiversity in that? This writer speaks of pseudo science on the side of parents wanting better lives for their kids but bases all her points on the pseudo science of neurodiversity. The VA shooter the kid in Sudbury and the kid in California all suffered from an autism spectrum disorder. They went out and killed because of the loneliness caused by the disorder. Where is the gift in that?
15 - Lucas McCarty
Why is it curbies go on about the lonliness and issues *speculated* to be caused by Autism but leave out that which is *definately* caused by the patently hostile enviroments they put around us?
16 - Margaret Romao Toigo
Ms. Taylor, I just checked, and the word "OPINION" appears at the top. If this article was intended as news, it would read, "NEWS" at the top, and there would be no slant.
Here are some anecdotes for everyone. Of course testimonial "evidence" is not scientific proof, but I really enjoy telling stories about my kids and Dawn did ask about that often fuzzy line between weird, but normal in the clinical sense, and autistic.
My son never spoke a single English word until he was about 4 1/2 when he walked up to me one day and said, clear as a bell, "Now available on video and DVD." I almost fainted!
Now, if I had been giving my son some drug or vitamin, or other treatment/therapy, I may very well have thought that that was what had caused him to suddenly start speaking clearly and articulately -- and sometimes even relevantly.
However, I didn't do anything whatsoever to try to teach him how to talk, and he hadn't even started speech therapy at that point. He just started speaking, just like he started playing preschool video games when he was about 3 1/2.
We didn't think any 3 1/2 year-old was ready to learn how to use the computer, so we didn’t try to teach him; but he was always lurking around and watching while we taught his older sister, who was 5 at the time.
Go figure. But, then again, an odd pattern of development â€" not simply a little off schedule one way or the other -- is one of the most common signs of autism.
My youngest daughter, who is now one month shy of 5 and whom I suspect will be diagnosed with Asperger’s, also started talking in whole sentences, but she was only 1 year old. She didn't start with single words followed by two word phrases like neurotypical children learning to speak; she spoke in whole sentences -- and not "baby-talk," but with proper pronunciation. "Look, mom, it's a butterfly!" she said, after having seen a butterfly
Go figure. And while I'm at that, I will contemplate what might be going on in her head when she spends hours staring off into space or out the window or at some toy or other object.
Now, neither one of them can use the toilet or get dressed without assistance -- and maybe they never will -- but I try not to focus on things like that because I know that they'll learn when they're ready, if they want to.
Of course both of them can throw spectacular tantrums, especially when they are forced to do things they don’t want to do or to go places they don’t like to go, but we've studied what triggers their meltdowns and avoid those situations whenever it is feasible.
My son hates theatres, auditoriums, and similar buildings/rooms, so we just don't take him to those kinds of places. But he loves to go shopping, so we can take him to stores as long as we plan to stay in them for at least an hour (he gets upset if he has to leave something he likes too soon).
My daughter has a security object in the form of a specific stuffed animal, so we don’t leave home without it. We can take her to the supermarket, but never into a shoe store because she is obsessed with shoes and must be allowed to try on every pair in sight, whether they will fit her or not, or she will start throwing them at people. I learned this lesson the hard way â€" fortunately, no one was seriously injured.
Because I accept the fact that autism is a permanent condition and that fighting it, rather than adapting to it, is a waste of time, energy and money, I can take all of this craziness without getting too stressed out.
Because I have learned to accept my autistic children as they are (what other choice do I have?) I can enjoy, rather than worry about, their quirks and fixations.
17 - Paul Awfit
Your intent and bias are obvious.
"a small chance for enviornmental" link
Your need for actually reading and then understanding the relevant studies and issues concerning genetics apparent.
Kids are being treated and many are improving.
18 - Margaret Romao Toigo
Lucas McCarty asks, "Why is it curebies go on about the lonliness and issues *speculated* to be caused by Autism but leave out that which is *definately* caused by the patently hostile enviroments they put around us?"
Perhaps that is a question of blame and responsibility. It is easier to simply blame the autism than it is to take responsibility for how one treats autistic people.
planet of the humans writes, "High Functioning Autism is a super-power, not a disability."
Then vsheehan asks, "What about the kids who do not have an amazing gift that could pay the rent?"
Neurodiversity is not any sort of science, it is a political concept and movement, which aims to, among other intentions, work toward finding a place in society for all autistic people, even those who do not have amazing gifts like planet of the humans.
Phil Schwarz writes, "What if, instead of 'Autism Every Day' and 'Getting the Word Out,' we had public relations collateral that eloquently illustrated the 'make or break' difference that the right kind of help, advocacy, and support can have, in the lives that autistic people lead?"
Phil, I think you may have just given me the topic for my next article on autism. What a wonderful idea -- that I wish I had thought of first!
I think I got so into the politics of autism charities that I merely complained about them without offering any ideas for improvement, something which I have criticized others for doing.
My penance for that offense will be to write an article suggesting ways that autism charities could actually be helpful to autistic people.
Paul Awfit writes, "Your intent and bias are obvious."
Thank you. They were meant to be obvious.
19 - Colleen Tomko
Well written! I think you have captured much of what happens in the world with this. As a mom, I create designs to promote acceptance and inclusion of people with disabilities.
20 - Yvona Fast
I have a problem with this (quote from article)
"autistic people of nearly every apparent ability can lead satisfying lives; attend college, earn a living, get married, have children, etc -- if they so choose."
That depends largely on whether these autistic people can find people who accept them... many can't. I for one have not been able to maintain employment; i keep being told "you just don't fit in here." That is the problem - in order to fit a square peg into a round hole you have to enlarge the hole and society is not willing to enlarge enough to fit me in... especially in the employment sector.
Yvona Fast
Author, Employment for Individuals with Asperger Syndrome or Non-Verbal Learning Disability: Stories and Strategies, Jessica Kingsley Publishers, 2004
North Country Kitchen: a weekly food and recipe column
21 - Lori Bakes
I read your article and though I do not agree of course it is an opinion just as I would like to state mine as well as my daughter's experience.
By all doctor's, video and teacher's accounts she was neurotypical until age 4-3/4 when she got her kindergarten shots all in one day. Then within months she was Dx'd with Major Depression at age 5, Asperger's age 6, ADD at age 8 and ODD at age 9. She was on mutliple medications, had signs of liver damage, needed multpile modfications in school and classroom support to stay in public school, developed trichtotillomania (pulled her own hair out), obsessed over quad cylcles, had no friends, didn't care anout how she looked, had trouble knowing the difference between hot and cold, was failing school and in all ways had trouble behaviorally, emotionally, academically and psychologically.
We tried traditional help for her for 5 years only to see her digress. We did seek alternative therapies at age 10. Now at age 12 she is on the Honor Roll, got voted on the All Star Fast Pitch Team, plays fast pitch (first base or catcher (no easy task!) is making A's and B's without classroom supports, is on no psychiatric medications, has many, many friends and is well liked in school, gets invited to parties and sleepovers, doesn't pull her hair (in fact has a beautiful head of curls!), shows no signs of liver damage and no longer qualifies for the diagnoses of Asperger's, ODD, ADD or Major Depression. She tells me "My mind is not foggy anymore and I can think now. I am better" This is what she tells me and she asks if I can help the other ASD kids in her room to get better too.
I promised her I would tell others of her recovery and accomplishments. She was not born Autistic therfore why would I just accept it as I would a genetic disability? I had a NT child for 5 years and then she was gone within a month. If I sat back and accepted her for the "way she was and the way she was meant to be" then I feel she would be an unemployed, violent, bald, unhappy person by the age of 20 because that was the directio she was going. She used to tell me she hated life, her brothers and sisters and me (she even was caught choking my son until he was blue). She now hugs me at least twice a day and plays wonderfully with her siblings. Go figure.
I am not posting to change anyone's opinion but rather to say we "curebies" are not always unhappier than the people that accept ASD for what it is because we are seeking the impossible looking for a cure for a "lifelong disability". Some of us are pretty darn happy we didn't listen to the naysayers and we are getting our kids back.
P.S. About the ASD documentaries depicting life with Autism as being too melodramtic for effect and having the mothers cry. I could have been the "star" in those shows. I cried all the time (being slapped, spit on and struck probably qualified me) because life was hard and my daughter was many times mean and uncontrollable leading to a life without friends and family who didn't want to be around us. So if others didn't have it that rough or don't have it that tough everyday consider yourself lucky that you aren't the right "cast memeber" to play the part.
22 - melvin polatnick
Hi Margaret
Your article made it very clear about the opposing forces involved in the Autism issue. But nobody wants to talk about the millions of adults who have survived after being labeled with a "character disorder" instead of being rightfully called "autistic". They grow up and are let out in this cruel world to kill themselves or with luck find themselves a place in the sun. Are chidren the only autistic humans that deserve compassion?
23 - Lucas McCarty
I read your comment Lori and sympathise, but can't at all understand why you choose apparently with no evidence to blame Autism/Aspergers for the difficulties your daughter had. I'd even call it irresponsible because it's people like me, not you, that must put up with the consequences of thousands of acedotes like yours.
24 - Lori Bakes
Lucas-I did not choose to blame Autism/Aspergers for my daughters psychological difficulties. I do not have MD after my name nor am I qualified or permitted by law to treat patients or dispense medications. Remember I am only a "mom" as I was told by the 2 psychiatrists, 3 psychologists, 1 pediatrician, 1 family practice doctor, 7 teachers, 2 principals, 2 guidance counselors, 1 well known psychiatric hospital, multiple therapists and 1 developmental pediatrician that "blamed" autism for her decline in a 5 year period. She even participated in a psychiatric research study for several months and had no change in diagnosis. I claimed she was vaccine damaged and was literally laughed out of offices and told there was no such thing. I was told I must have missed the "signs".
So I feel sorry you feel ramifications from people like me but the authority of diagnosis does not lay in my hands alone. I believe it falls in the multitude of other professionals that treated her for Aspergers and claimed she would be disabled all of her life. I feel it was irresponsible for people to tell me to "accept her for who she is" and learn to love her with her differences for the sake of Autism.
25 - Lucas McCarty
I'm not sure exactly what it is you think I said. Medical professionals gave a diagnosis, this does not in anyway saturate information resources with factually-suspicious and demonising trivia about Autistics. It's not Autism experts filling the internet, legal system and governence with this; it is you and your post repeated over thousands of times in some form or another everywhere all the time. In the Autistic community, there are middle-aged Autistics that hated themselves for decades because they believed based on such carpet-bombed falsehood that Autism is at the root of their every problem. With the prevalence of the internet that began to change as they realised there were others more or less able than them that thought different.
It's only when they actually speak to someone who has not had their life coated in putrid garbage about what being Autistic is, the fact that this applies to those any place on the spectrum shoots down the myth often spread by curbies that we only 'like it' because we're 'high-functioning'(these people haven't even met us). Look at the UK National Autistic Society website and try to find a single sentence where they scare-monger and compare it to the fear factory organisations across the ocean.