Alex Barton And The New Wave Of Autism Activism

New York Magazine has a detailed and intensive article on a new wave of autism rights activists. These new activists want "to celebrate atypical brain function as a positive identity, not a disability. Opponents call them dangerously deluded."

The impetus for all of this? An NYU Child Study Center advertising campaign:

On December 1, the NYU Child Study Center came out with advertisements in the form of ransom notes. One said, "We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives. This is only the beginning." It was signed "Autism." Another said, "We have your son. We are destroying his ability for social interaction and driving him into a life of complete isolation. It's up to you now," and was signed "Asperger Syndrome."

Autism activists reacted strongly, spearheading a huge protest:

The chief organizer was 20-year-old Ari Ne'eman, who has an Asperger's (autism without speech delay) diagnosis. In a memo to his Autistic Self Advocacy Network, he denounced the campaign as relying on "the oldest and most offensive disability stereotypes to frighten parents." While people with diagnoses of autism and Asperger's have difficulty with social interaction, he added, "we are not incapable of it and can succeed and thrive on our own terms when supported, accepted, and included for who we are."

You can read the whole story here.

The New York Magazine article comes on the heels of 5-year-old Alex Barton being voted out of his kindergarten classroom. Alex Barton is in the process of being diagnosed with Asperger's syndrome, a type of high-functioning autism. According to his mother:

"[The teacher] took him and stood him in front of his classmates this week, asked every single child to tell Alex why we don't like him... in his words, tell Alex why we hate him," [his mother] explains.

After having each child ridicule the boy, she says the teacher continued belittling him.

"Then they had a vote on if he deserved to stay in the class or not," says Barton.

Like a twisted reality show, Barton says in a 14-2 vote, his classmates voted the five-year-old out of the classroom.

Alex's mother is fighting back and considering pressing legal charges. You can also help support Alex Barton by writing to his school board.

So, it would seem that a new method of confronting mental disorder discrimination is brewing. The New York magazine story about autism advocacy follows on the heels of a May 11 story in The New York Times about the burgeoning "mad pride" movement, which aims to fight the stigma of mental illnesses like schizophrenia and bipolar disorder, and even, in some cases, celebrate it.

So what do you think? Do you think it's empowering or dangerous for people with autism and mental illness to celebrate their conditions? Please share below in comments.

Comments

[5150]

APA took sides at Abu Ghraib: humanity lost, but doesn't Sabrina Harmon have a bright smile!

[AlisonHymes]

What kind of question is that? The only choices you give are dangerous or empowering? why is dangerous even given as an option? What danger? The danger that human beings with disabilities will not feel less than the rest of society? That's a danger? Do you even ever read disability rights blogs or books or have any familiarity with this subject? HuffPost couldn't find a person with a disability to write about this subject?

[jst4fun]

Autistic individuals who are high-functioning like many with Asperger's are a minority in Autism Spectrum Disorders (ASD). As the name implies, there is a huge spectrum of specific symptoms and degrees of severity. While it may be possible to treat higher functioning ASD individuals as relatively normal people in mainstream society, the majority of ADS individuals have fairly severe cognitive difficulties which means they can't function on their own and will need life-long care. We can't just treat these individuals as just quirky people. ASD still needs research and treatment for those that are severely affected and those whose ASD is accompanied by low IQ. Advocates for not thinking of ASD as a disease that needs a cure are almost always those who are high-functioning or are an advocate for a high-functioning individual. You would be hard pressed to find an advocate for just accepting ASD as a quirky personality trait among those families who must support severely affected individuals. Also, just on a personal note, the teacher who humiliated that kindergarten student should be immediately fired and if criminal charges are not possible then she should be sued by the family for the mental pain she inflicted on an innocent child. Even if he wasn't diagnosed with Asperger's there is no excuse to EVER treat a child like that, Autistic or not.

[Dziga]

I don't think that anyone is implying that people with Autism Spectrum Diagnoses are "just quirky." Their brains function in a way that can be seen as profoundly different from "neurotypicals." Even the high functioning have an astronomically high unemployment rate, as well as high rates of depression and anxiety disorders. But, new studies have been showing that IQ tests of Autistic individuals are almost always profoundly wrong-- the tests themselves are meaningless when applied to low-functioning autistics, and in fact IQ has been grossly underestimated for many people. But Autism advocates are not glossing over the problems you mention, nor are they saying that if everyone was open to diversity that ASD individuals would have wonderful carefree lives. Rather, by approaching ASD as an illness that should be cured, the scientific, medical and educational communities are overlooking how autistic people actually experience the world, and how that is meaningful, legitimate and ultimately scientifically important. And also that these people are, in many ways, much less disabled than we assume.

[Dziga]

Continued >
If a deaf person can not talk, do we assume that he/she is retarded? Or has no rich inner life? If a person has no friends, is it because he is deficient? Perhaps he enjoys being alone. Or prefers the company of animals to humans. If an autistic boy has a tantrum in a school is it because he is cognitively disordered? Or because he is terrified by all the people, ear-splitting noise, humming lights and sensory confusion of school? We need to listen to the autistic, often they will tell us a lot about our own society and what we think is normal.

[zizyphus]

My heart goes out to little Alex and his family. If the story is accurate, that "teacher" should be fired immediately. She obviously doesn't have good judgement.

[msfiskvletterman]

5/29/08
4:17pm
Eugene, OR

What a horrible way to treat any kindergartener.

My son was diagnosed with autism when he was 2 but mainstreamed into a kindergarten class when he was 5 because he was not violent--did not hit other children or "act out," and had begun to speak. Thank goodness the teacher did not complain about him. He seemed happy with the arrangement. Working and socializing with the other kids was good for him.

I think the key to making this work is keeping young (pre-school) autistic children away from children who are behaving badly because they model that behavior--making mainstreaming very difficult for everyone.

[Gracchus21st]

[continued...]

And while I don't believe that society should bend over backwards to accomodate those whose thought processes work differently (especially those who are disruptive or dangerous), I do think that people with autism and AS in general would have a much easier time of it if only Americans could accept diversity of thought along with diversity of skin colour and religion. But that's not something that America -- especially Bush's America -- does particularly well.

The teacher's little Maoist criticism session is a case in point. It isn't surprising in the context of the goals of America's dysfunctional and outmoded public school system (see http://www.johntaylorgatto.com site, especially the easily digestable "History Tour"). Far from being a cause for discipline, the incident has no doubt flagged Ms. Portillo to the local board as potential administrator material, certain to bring up those NCLB test scores.

[Gracchus21st]

As an adult with Asperger's Syndrome, I find the NYU ad campaign simplistic to the point of insult. While I'll acknowledge that there is a point in the spectrum where a different brain structure impairs functionality, autism is a spectrum condition. And I can assure you that, under the right conditions, those on the higher-functioning end of the spectrum aren't "held hostage" to a life of "complete isolation."

I was fortunate in that, even before AS was recognised by the psychiatric community in 1994, my family was tolerant of (if bemused by) what were thought to be eccentricities, and placed me in (or allowed me to choose) school environments that were similarly tolerant. Another family member with more profound autism has finished college and is fully self-sufficient with a group of wonderful friends, and I credit that outcome in no small part to his parents' ability to accept him for the person he is, and to find environments where he'd find similar acceptance.

I don't "celebrate" my condition or take "pride" in it but, unlike the simple-minded creators of the NYU ad, I do accept it for what it is. The good effects have served me very well, and with age and experience I've been able to find ways around most of the bad ones enough to "pass" in neurotypical society. I'm not looking for a "cure" because, in the end, I have as much or less "wrong" with me than most neurotypicals.

[conservatoire]

Yes, if the teacher actually did this then fire her immediately. However, it is my experience that whatever student/teacher confrontations occur in school classrooms are tremendously embellished by both student and parent alike in their attempts to win in the court of public opinion. And the majority of the time, it is nowhere near as "egregious" as it is made out to be.

Ok. Call me naive, but in my 20+ years of teaching (and over 40 as either a student or observer of the process) I have never seen such atrocious behavior on the part of a teacher. More to the point, I have never seen an accusation of such behavior that didn't turn out to be grossly over-exaggerated for the purposes of "making a headline."

Example:

Student claims, "Ms. Jones told me I would never amount to anything."

Reality:

Ms Jones said, "If you don't work harder to improve your grades, you will have a difficult time amounting to anything."

Unfortunately, rarely is the teacher given the benefit of the doubt. It seldom happens the way it is described, and children (even those old enough to know better) will deliberately fabricate and inflate an incident if they think it will "salve their wound."

[pinkypeterson]

No link between mercury and autism but now there could be one with cell phone radiation (also cordless phones, baby monitors the worst, TVs and now the new wi-fi connections) Of course your child does not have to use a phone to be effected but just being around one - in the air space. So could you imagine what they must be going through when they enter the computer room at school that has 20 computers hooked to the new wi-fi connections that most schools are turning to or live right near a cell tower.

There are products on the market now that help neutralize the radiations so it does not go through your body - these products seem to be helping people effected with ADD/ADHD, autism, dyslexia, even for people who feel over stressed or unorganized...

Trust me the cell phone companies don't want you to know about this.
Not saying it is a sure bet but it might be something to look into.

[Jadonia]

I work w/ a 17yr-old (non-verbal) autistic & a 22 yr-old Asp. I directed an 11yr-old w/ Asp. in a children's play. The teacher's behavior stinks but I sense more to the story. Understandably, mother is upset. The person with Asp. processes social rejection in such a way that what really happened and what the child perceived could be the difference between 2 and 10 on the scale of 1-10. It takes very little to get a huge reaction from someone with Asp. Sometimes parents of a DD child are their worst advocate. They can become misguided and seek to smooth the way for the child when in fact, they are creating barriers to what normalcy is possible. Parents can be over-protective to the point of painful restrictions and limitations, preventing DD children from learning skills to live in the real world. It is natural for a parent to protect their child from abuse but unfortunately, that child still must live in the world. No one, disabled or perfectly healthy, escapes teasing, insults or disappointments from peers. Parents should seek alternative therapies, nutritionists and vocational rehab but they cannot protect their child from everything. The teacher may have been new, stretched beyond endurance, unaware of the child's special needs and while not acceptable, might have thought peer feedback would be helpful. Again, totally bad idea. I have doubts about what really happened in class. We cannot be certain of the truth, having only one side.

[Fletch17C]

From what we have been told in this article, the teacher's actions concerning Alex cannot be defended. Still, there has got to be much more to this story than "Let's make fun of the disabled kid." Alex is said to have "discipline" issues. What were they? Did they threaten the safety of the other children? Please understand -- the teacher was clearly wrong to handle the situation in such a humiliating way, but there MUST be much more to this story than Alex's mother is letting on.

[Richcelt]

In a way, the point is the fact that whatever "behavioral issues" Alex had doesn't matter. If he's disruptive to the class (which he likely was) and if the teacher couldn't handle him any more (which she obviously couldn't, despite her 12 years of experience), then there are methods to having him removed from the class (and hopefully INTO one that could better help him). Humiliating him in such a way as she did is NOT one of them. Such a thing should be done "behind closed doors" with the teacher, Principal, and parent.

[CriticalDune]

Autistic pride is fine with me and I support it, as well as societal accomodation of difference. I also thought the NYU campaign was grossly offensive. I've sat through many hearings and listened to highly qualified adults with aspergers's testify to their challenges and difficulty finding and holding jobs because of their differences. These stories are no less tragic to me than the dozens of others voiced in these forums.

However, as the parent of a child who cannot, nor will be able to effectively self advocate as an adult, I do find the more extreme views held by some in the ND community inappropriate, often naive, and occasionally offensive. I also find it ironic and tragic that while some in this community oppose intervention of any type for neurological disorder, on the home page of one of the lead ND blogs is an article mourning the suicide of one of their communities leading self-advocates.

I recognize that the ND community feels slighted about the overwhelming focus on "kids and cures" when autism is discussed. Adult community based supports, adaptive therapy and tools, and accomodation are all critically important too. I will advocate for and support more focus on their needs if they will recognize that my child's needs are likely different than theirs, and no less important to address. Too often the absence of thinking about autism as very different "autisms" leads to unnecessary conflict and acrimony on both sides.

[rosestone50]

The following is the editorial statement which I forwarded to the Press Journal, Treasure Coast newspaper for the state of Florida, on Saturday, May 24th:

"Alex Barton, the 5 year old who was attending Morningside Elementary, never imagined the lessons he would have to learn at school. He thought school was for learning his subjects, playing and making friends. Alex had some disciplinary issues because, at the present time, he is being diagnosed with Asperger's syndrome, a form of autism.

But did that allow his Kindergarten teacher, Miss Wendy Portillo, credence to rebuke him in front of all of his classmates while they voiced their negative opinions about him and to vote him out of class? Absolutely, unequivocably not! Why did this teacher choose not to contact Alex's mom or the principal for that matter?

This teacher is guilty of gross negligence and horrendous emotional abuse and trauma. She should be held accountable, disciplined and terminated for lack of proper judgment and victimization of a student.

My only hope is that little Alex can someday put this sad, dehumanizing experience behind him and can one day be made to feel "special" again in class."

Look for the editorial to be published by June 1st.

Hope this statement helps to support Melissa Barton and Alex.

[carolinacowboyinla]

I do not know a lot about this, I am VERY blessed with two healthy children. I am an actor and I play in a lot of charity golf events, mainly anything to do with helping children. I'm playing in Jeff Foxworthy's tournament this weekend for Duke's Children Hospital in Durham, NC. I want to do anything I can to help all children live long healthy lives.

My wife has recently introduced me to a nutritional juice called Mona Vie and our whole family is taking it everyday now and we are seeing amazing results. I have been doing a lot of research on this product and have found a lot of information about about how it is helping kids with Autism. I have included some sights for you to check out what I'm reading for yourself. I do not know this to be a fact but all I can do is show you what I'm reading and tell you that the product is all natural juice that has a blend of 19 different fruits including ACAI. We love it!

http://www.trytheberries.com/docs/testimonialsMonaVie.pdf

If you feel like it is worth a try, we buy ours at www.thefactsaboutmonavie.com
This is a friend of ours and she will be happy to provide you with any additional information you may want. I wish health and happiness to you and your family ALWAYS!

[caesarf]

spam

[NYCBear]

This is outrageous spam. Why hasn't it been removed?

[shpjohns]

What a beautiful, blue eyed WHITE boy! I cannot think of a better face of autism activism. That should get a lot of people caring about educational issues such as equal access and inclusion models, meanwhile thousands upon thousands of other children suffer in poorly funded and substandard schools.

On top of this, why are we not questioning further why a teacher did indeed think this was appropriate. To a large extent, we have precisely the kind of teachers the market has demanded, which are poorly trained, business school drop outs that know just enough to be able to supervise children for six hours without doing irreparable damage, although this is not always a guarantee.

Reward teachers in a way that will attract worthy, intelligent people to the profession, as do medicine and law. Otherwise, the bulk of teachers will skirt through a teacher education program with a 2.0 as a last resort. Thus, we are left with this deplorable situation in the article above.