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Neurodiversity

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The good, and bad, thing about being an inveterate web surfer is that you never know where you're going to end up. Take yesterday, for example: I started off at blog run by a young feminist, because it was mentioned in a newspaper article I was reading. It led me to another blog that had a post honoring the memory of disability-rights advocate Harriet McBryde Johnson.

Johnson, who died earlier this month, was a fierce advocate for people with disabilities, and was also scornful of what she felt were "pity-based tactics" of those who would raise money for research into disabilities -- Jerry Lewis was a particular object of her ire.

Which made me start thinking about my own writing, and if I allow people with disabilities enough space in my articles to express their own thoughts, rather than allowing others to speak for them. Part of the difficulty is that I'm writing about children, and adults normally speak for children. But are my own prejudices permitting me to allow people with disabilities to have their own say?

This was a perfect time, therefore, for me to come across this recent ABC News story about a young man with Asperger's Syndrome who would like people to stop treating him as if he has a disability, and start recognizing autism as an acceptable neurological difference that does not need to be "cured."

(The ABC feature comes right on the heels of a lengthy article in New York magazine on the same topic.)

What would that mean for educators, I wonder? "Anti-cure doesn't mean anti-progress," said one of the leaders of this movement, Ari Ne'eman. And a mother quoted in the story says that some of the treatments her son has undergone are a waste of time, and she'd like to see better services for him.

But Thomas Insel, director of the National Institute of Mental Health, cautions against "romanticizing" and "trivializing" mental disorders. Children with autism are not merely shy loners, he says.

I think we can all get behind the idea of treating a child as something more than a bundle of defects that must be fixed. Is the idea of neurodiversity and groups like the Autistic Self Advocacy Network moving too far in a direction that leads away from appropriate treatment?

16 Comments

The problem is not with the self advocacy groups moving too fast.

They seem to be on the forefront looking at the research and medical findings. The problem is with the health insurance/health care system that will not educate itself about the equally neuro-diverse treatments and services for our neuro-diverse population.

This dialogue is important. In my opinion, it should go without saying (but, sadly, it doesn't) that respect for the whole person, with or without a disability, is an inalienable right. That said, I feel it is crucial to call autism what it is: a disability. Language is a symbol system and, although imperfect, is a tool we use to communicate. 'Autism' describes a set of symptoms that exist on a continuum and impair a person's functioning. In my opinion, we need to be careful about describing autism as simply a difference. Autism is a real disability. People with autism need respect and services. In order to obtain services, we need to use the power of our imperfect symbol system, language, to identify the disability (diagnose) and to provide the requisite services to match the needs of the individual with it (prescribe). Certainly we need to do this with recognition of and respect for the whole person. I agree with Dr. Insel.

I think that many are missing the point of the Neurodiverse. They are NOT saying that they do not have a disorder. What they are saying is, stop trying to cure them because Autism is a part of who they are.

The largest problem our children face is lack of acceptance by society. If our children would be at least 'tolerated' like some physical disabilities are, things would be much better. However, because they have a hidden disability, they are considered to be mentally diseased, or just victims of bad parenting.

Asperger's and Autism are not Mental Health disorders (like anxiety, for instance)...they are Neurological differences, much like some are intellectually gifted, some are not.

For every neurological difference, sometimes a new door is opened. Look at Albert Einstein who was a social misfit. Or perhaps, Steven Spielburg (has Asperger's) who creates some of the most creative works. Would these people be who they were without Autism?

I for one, wouldn't want to take the chance and cure them to see.

The Autistic Self Advocacy Network and much of the Neurodiverse community are trying to foster acceptance. Because much fear and loathing exists in the mainstream society because they are different.

Yes, autism can be a disability. But that doesn't mean that the only option is to cure it. With the right services and environment, many autistics can accomplish quite a bit. Put my daughter in a noisy, crowded, disorganized environment and, yes, she is quite disabled. Put her in a calm, ordered, quiet environment with clear expectations and instructions, and she is highly capable. She would be a very productive employee -- if someone would give her a chance.

Unfortunately, services for someone like her dry up after high school, and without those, so do opportunities for her to be productive.

She doesn't need to be cured, she needs support, acceptance, and understanding. And that is what the Autistic Self Advocacy Network is asking for.

Hi Karen and Amy -- thanks for joining in.

Your comments are reminding me of some arguments that I have heard in the Deaf community (capital D intended.) My understanding there is that Deaf people don't want to be seen as having a disability that must be "cured"...many Deaf people can talk about the years and years of their lives that they believe were wasted trying to get them to communicate orally. Instead, they want to be taught in what they say is the native language of the Deaf, American Sign Language.

I may be making an inapt comparison, but I see some parallels.

Turning back to schools (because that's what I cover), what do you think educators should be doing that they're not? I'm thinking of such techniques as ABA. Is that kind of intensive behavioral training a waste of time and effort, do you think? Is it akin to spending years trying to teach a Deaf child to speak and read lips? What would you like instead?

Personally, I do believe that when the goal of ABA is the make the child look as 'normal' as possible (indistinguishable from their peers is often the goal), it is a waste of time and money, as well as potentially damaging to the child. Used to teach specific skills, it can be very useful. But an intensive program designed to behavior-mod all autistic behaviors out of the child is not appropriate. It is akin to teaching a blind child to pretend they can see, so they will look more normal, rather than teaching them braille, or how to navigate a room.

While I doubt it is the intention of well-meaning parents, the message that is often sent is that the child is not acceptable or lovable enough as they are, and they need to stifle their core and become this 'normal' child that their parents desire. Imagine a daughter born to parents who desperately wanted a son. So they frown on any interests or behavior that is considered female, and are only happy with their daughter when she behaves in a way that would be considered more male. Think about how a child raised in that environment ends up feeling about herself.

The comparison with the Deaf community is very apt. There are many similarities between their struggle for acceptance and those of autistics. Or the struggle of gays to find acceptance. Lovaas, the father of ABA, got his start trying to cure homosexuals. These days many people recognize that being gay is not something to be cured -- hopefully that will eventually be true for the autism community.

As far as what schools should be doing, that really varies from child to child, and what is possible in each school district. Some children thrive and accomplish a lot under inclusion. Others do much better in small classrooms that are geared to meet their needs. My daughter thrived in a wonderful private school with small, self-contained classrooms, and a well-trained, dedicated staff. She was also included in mainstream afterschool and weekend activities, so she had experience in the non-special ed world.

Flexibility is the key, as well as an environment where the student can feel safe, and accepted. Far too often I hear about students on the autism spectrum who are treated cruelly by their classmates -- and even by their teachers. Within that, actively fostering peer relationships, allowing the student to use their strengths while remediating their weaknesses, and providing an appropriate level of therapeutic support would be ideal.

Flexibility in levels of study would also be good. My daughter excels in science, while she doesn't 'get' most fiction. Many programs would hold her back to her weakest level in all subjects, when what she needed was either an English program that used only non-fiction, or a lot of support for fiction study.

So, in a nutshell, I would prefer to see programs that teach a student on the autism spectrum how to function in the world as an autistic person, rather than as an autistic who is trying to pass for normal. Build up strengths, strengthen weaknesses, and give the students the tools they will need to navigate the world.

There is a story in the Whittier Daily News about a student with autism who recently graduated from his local high school. It's an uplifting story about someone who has overcome difficulties associated with this condition.

I have four children who have been diagnosed with Asperger's Syndrome, which is on the autism spectrum. Three are in the local public school system and one is still in pre-school.

The key for us in the school system has been to meet with the school regularly. In our district, the Asperger's diagnosis puts our children in the special education category, which means a thorough individual education plan (IEP) for each child. Input into this plan comes from the parents, the classroom teacher, the school's special education coordinator, and any other staffers - i.e. speech therapist, physical therapist - who assist with their education.

These meetings, as well as other communication during the year, keep you plugged in to the school system. That line of communication is critical to keep the home and school on the same page.

http://40-year-oldblog.blogspot.com/

"I think we can all get behind the idea of treating a child as something more than a bundle of defects that must be fixed."

Thank you. I agree wholeheartedly that I and children like me, are much more than the sum of our parts - and those parts are not deficient. Autism affects my personality but it is not a defect.

"Is the idea of neurodiversity and groups like the Autistic Self Advocacy Network moving too far in a direction that leads away from appropriate treatment?"

However, this question offends me. Neurodiversity isn't simply an idea or a proposed policy - it is an actual reflection of life as it is. Human beings ARE diverse. Physical differences, mental differences, emotional differences exist and play out in myriad ways. Neurodiversity is simply another manifestation of the human condition.

There is no appropriate discussion to be had on whether groups such as the Autism Self Advocacy Network are moving in the "right" direct. Self-advocacy is, by definition, defined by those who are advocating on their own behalf. No one outside the group has standing to determine what group members feel is important to advocate. As a member of the target class, I can tell you that advocating for acceptance of who I am, as I am, is incredibly important just as it is in any civil rights struggle.

My bias in this discussion is that I am a 12 year-old kid with Asperger's/autism. I am considered "highly functioning" and a gifted learner but I do struggle with functioning in society and social situations. I failed dismally in public education. Or rather, public education failed me.

I experienced little acceptance and no respect from the educators I encountered in public school. The emphasis in all of the IEPs, behavior modifications plans, and treatments ever written on my behalf were to make me and my behavior "normal". It was more important that I appear like everyone else than it was to help me understand social conventions and determine whether I needed/wanted to conform in any specific instance. Adults are generally given the opportunity to choose from among numerous avenues of acceptable behavior within society, but children are not. Children identified as special needs have even fewer options - their only goals are defined in terms of how well they meet norms, rather than how well they develop, grow, learn and expand as individuals.

I empathize with parents whose children cannot interact or function as a result of autism or other disorder. However, respect for differences and diversity not only offers a starting place for those children to grow, live, and thrive - it also opens up a whole new realm of possibilities for achievements and accomplishments that would not be possible for a neurotypical child.

"Appropriate treatment" is not possible unless and until educators adopt a policy of unfailing respect for the individual. Progress is more important than a cure. Acceptance of difference is more important than achieving normalcy. Tolerance is not good enough because it demands change or at least movement toward an external norm.

I deserve acceptance and respect as I am.

PS
Check out my blog on my life as a "twice exceptional" child (gifted and learning disabled).

http://giftedgearreview.blogspot.com

In this article where 'Thomas Insel cautions against "romanticizing" and "trivializing" mental disorders' first off, Aspergers Syndrome and or Autism are not "MENTAL DISORDERS". It is a neurological disorder. Mental disorders are Schizophrenia, Bi-polar disorder, the emotionaly disturbed for example. A lot of people with Aspergers, or high functioning people with Autism, go on to lead normal productive lives, with out medications as opposed to those with Schizophrenia or Bi-polar disorders.

With that said, I agree it depends on the type of treatment and needs of the child as to whether or not it's a waste of time. Some treatments may be a waste of time for one child but benefit another. Overall, I agree there needs to be better services for this population of children and adults. Goal is to help them reach their full potential so they can go on to lead, as close to normal as possible, productive normal lives.

I am disabled when people reject me for experiencing and interacting in the world in a different way.

I am also disabled by the same things by which normal people disable themselves. In a high arousal zone (office, school, crowded high street) continual exposure causes high stress in normal people, and overload in me. Perhaps if society had more respect for the ways poor design and poor education regarding group dynamics works, then we might all benefit - normal and neurodiverse alike.

I am all in favor of a neurodiversity movement to replace the deficit model that continues to dog special education classes across the country despite reform efforts at inclusion. I believe, though, that we should expand it to include not just autism and Asperger's, but ADHD, LD, bipolar, and other special needs labels. Increasingly we're seeing brain research and clinical evidence that points to positive attributes in people with these labels. This is not romanticizing mental illness. It's de-stressifying it. I've suffered from a mood disorder for most of my life, and believe me, it's no picnic. Many people with these disorders undergo tremendous suffering in their lives. But some of the suffering they experience is due to the negative labels (and condescending treatment) they receive from public school special education programs. To read more about my views see my article, "Special Education and the Concept of Neurodiversity." on the New Horizons for Learning website: (URL: http://www.newhorizons.org/spneeds/inclusion/information/armstrong.htm).

Correction on the URL for the article: "Special Education and the Concept of Neurodiversity" by Thomas Armstrong:
http://www.newhorizons.org/spneeds/inclusion/information/armstrong.htm

I object to the differentiation between schizophrenia and Autism, where the first is a "mental disorder" and the second a "neurological disorder". Schizophrenia is nothing more than neurological differences, just like autism. I am curious as to how some people can see them as falling into two distinct categories.

Hi all: thanks to everyone for writing in. This is obviously a topic that inspires quite a bit of interest, which means there's a story idea (or two or three) in here for me.

I've noticed that most of the comments have come from people who are supportive of neurodiversity and the point of view that autism (and maybe schizophrenia?) are brain differences, not disorders, and thus do not require a "cure." But not everyone feels this way, I know, or we wouldn't be talking about this. There are parents who have made different choices, and I'd love to hear from them if any are reading.

I've been exploring the Asperger's/autism neurodiversity movement in the context of a third wave of social justice. I am social change activist focusing on war and environmental issues.

Please visit http://www.neoteny.org/?p=224 for details.

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