I am not a puzzle, I am a person

[Guest guest]

http://www.salon.com/env/feature/2009/04/27/autistic_culture/?source=newsletter

Monday, Apr 27, 2009

" I am not a puzzle, I am a person "

People with autism don't need to be " cured, " argues the burgeoning " autism

culture " movement. Not all parents or medical experts agree.

By Svoboda

April 27, 2009 | Long before her son Michelangelo's first birthday, Dana

Commandatore began to suspect he was different. The other babies she knew

babbled animatedly to everyone in sight. Michelangelo, though, never took much

interest in children his age, and by the time he was 18 months old, he still

wasn't speaking. Determined to find out what was wrong, Commandatore took her

son to the pediatrician. " They sent us for a hearing test. The technicians were

trying to put the headphones on and Michelangelo wouldn't let them do it, " she

recalls. " One tech said to the other, 'It seems more like autism than a hearing

problem.' I turned around and said, 'What?' "

When Michelangelo's autism diagnosis was confirmed soon after, the verdict was

more of a relief than anything else -- it seemed to suggest a clear course of

action. " We knew who he was, " Commandatore says. " Now we knew what to do. " In

the process of scouring the Internet, she stumbled across Web sites run by

autistic adults who advocated a school of thought they called " neurodiversity. "

Autism was not a " disease, " their reasoning went, but a " neurological variation "

that ought to be as respected as a difference like skin color or sexual

orientation. The Centers for Disease Control and Prevention estimates that the

prevalence of autism spectrum disorders in the U.S. is about 1 in every 150

8-year-olds.

The advocates' core message -- that autistic people should be celebrated for

their uniqueness, not aggressively " normalized " -- struck a chord with

Commandatore. She began learning more about the movement and went to hear Ari

Ne'eman, president of the Autistic Self Advocacy Network, give a lecture. " I am

not a person at all who joins groups. I'm not religious, " Commandatore says.

" But when I found Ari's Web site and saw him speak, he put into words what I had

been thinking. "

Like the deaf culture movement before it, the so-called autistic culture

movement continues to gain traction, boasting thousands of adherents among

parents, patients and healthcare professionals. And the rhetoric is often as

strident as anything out of the deaf-pride movement. Some autistic people even

use the pejorative term " curebie " to refer to people who hope for a cure for the

condition. Organizations like Autism Network International view efforts to cure

autism as similar to misguided efforts to cure homosexuality and

left-handedness.

As its associated swag -- buttons and T-shirts proclaiming " I am not a puzzle, I

am a person " -- suggests, the movement aims to redefine autism as something to

be valued and protected, not obliterated. Proponents insist that forcing

autistic people to behave like " neurotypicals, " a term that borders on

insulting, squelches the very qualities that make them unique. " The real ends

for autistic people should be quality of life, full access in society, the kinds

of things we support and are working for, " Ne'eman says. " Parents have been told

that the way to approach these things is to support research for a cure, but our

belief is that that's not the most effective paradigm. "

In other words, McCarthy can go jump off a cliff. While the Hollywood

comedian's claims that childhood shots cause autism may be well-intentioned,

Ne'eman says, her message has a pernicious and probably untrue implication: If

we stopped giving kids " toxic " vaccines, autism wouldn't exist. Not only does

this message distract from pragmatic efforts to get autistic kids the social

support they need, it implies that autistic children are inherently less

valuable than their normal counterparts. " The cure paradigm sends a message that

there is somehow a normal person under the autistic person, and that's a

significant denial of who we are. "

But it's not just anti-vaccine diatribes that raise autistic culture crusaders'

ire. Their primary target is something much broader and more insidious: the

general therapeutic approach to autism in the medical community. Many autistic

rights advocates have spoken out against applied behavioral analysis (ABA), the

most common type of autism therapy, developed by UCLA psychologist Ivar Lovaas

in the 1960s and '70s, with the goal of helping autistic children achieve

" normal intellectual and educational " functioning. The therapy, which uses

repetition and rewards to reinforce new skills, is geared toward extinguishing

autistic behaviors such as " stimming " (making repetitive body movements) and

failing to make eye contact. One sign of the treatment's success, Lovaas

suggested, might be for school personnel to perceive an autistic child as

" indistinguishable " from his or her normal peers.

Approaches like this miss the point entirely, says Kathleen Seidel, the

webmaster of Neurodiversity.com and the mother of a child on the autism

spectrum. Instead of trying to coerce autistic kids to behave like

" neurotypicals, " therapists should focus on helping them deal more effectively

with the non-autistic world. " A person's nervous system is not fundamentally

going to change -- an autistic person is going to remain autistic throughout his

or her lifetime, " Seidel says. " And it can be very problematic and a source of

stress for an autistic child to have to suppress certain mannerisms. "

Equally problematic, says Dora Raymaker, a Portland, Ore., artist with autism,

is the tendency for medical professionals to impose " normal " behaviors on

autistic people -- even when those behaviors do not necessarily improve their

ability to function. Rather than undergoing continual and grueling speech

therapy, Raymaker has fought to express herself via text chat, the communication

medium with which she feels most at home. " If we'd done this interview on the

telephone you would have been lucky to get much more than disjointed,

stuttering, completely non sequitur responses from me, " she told me in an

instant-message conversation. " But because you allowed me to do this interview

through text-only media where I can slow down, really understand you, and bypass

my difficulties with spoken language, I'm able to give you intelligent, on topic

answers. "

The key assumption that underlies much autistic culture discourse is that any

autism-related limitations can be worked around and dealt with in a way that

does not compromise the autistic individual's core " personhood. " When such

workarounds are found, Raymaker asserts, the concept of a " cure " becomes

irrelevant. " Do I need a pill to make me suddenly able to have phone

conversations, or do I need you to be able to find a middle ground that bypasses

my disabilities? "

Some parents and therapists counter that this kind of active opposition to

suppressing autistic symptoms is a niche crusade -- one mounted by a small,

visible group of high-functioning autistics who don't represent the autistic

population at large. If a child stages screaming outbursts in the classroom or

has trouble stringing together a complete sentence, New Brunswick lawyer Harold

Doherty argues, does it really make sense to treat that child's condition as " a

different neurological way of being, " instead of a disease that imposes severe

limitations?

" Some of these advocates oppose a cure and they appear in court proceedings. In

all these cases, they're talking about other people's children, " says Doherty,

whose son Conor is autistic. " Who gives them the authority to represent

autistics? What does Ari Ne'eman know about Conor? He has no real investment in

my son's life. There's a denial in this movement of the challenges of more

autistic individuals. It's not a feel-good story to talk about kids who are

smashing their heads into things. "

The question of whether autism should be considered a medical condition or a

variation in neural wiring isn't just one of semantics. If autistic-rights

advocates win their court battles, many treatment programs could stop receiving

government money. In 2004, for instance, autistic-rights crusader

Dawson convinced the Canadian Supreme Court to overturn an appeal that would

have provided state funding for ABA therapy. If similar legal efforts succeed in

the U.S., says Massachusetts psychologist Bolick, autistic children could

be hampered in acquiring the skills they need to interact with the world.

" One of the main dangers of saying, 'This is not a developmental disorder,' is

that federal and state governments don't usually fund intervention for

differences, " Bolick says. " Parents say, 'But what if his natural personality is

to be a hermit? What if my son just wants to be like Thoreau?' I say, 'You know

what, if he wants to be Thoreau, that's terrific.' But we need to give people

the skills so they can choose whether to be like Thoreau or like a more social

person. "

Bolick adds that the justification many autistic culture advocates give for

slamming ABA -- that the therapy is condescending and attempts to turn autistic

children into people they're not -- is strained and largely outmoded. " If we

look at contemporary ABA, we see tremendous attention to the individual and

tremendous appreciation for personality, " she says. " Old-fashioned behavior

modification has the reputation of using aversives and denying individual

freedoms, but that's not the way good treatments are anymore. For the most part,

reinforcement is driven by what the kid wants to do. One kid loves it when his

teaching assistant draws for him, so he'll do anything if she'll draw. "

Ne'eman disputes the accuracy of this portrayal, citing cases in which autistic

children were abused and restrained in the name of " therapy. " " There are very

significant problems with the way in which intervention is approached, " he says.

" The founders of ABA quite unabashedly practiced the use of aversives, including

electric shock, and this is something that continues to this day. "

In some cases, inappropriate therapeutic interventions may be a catalyst for

antisocial behavior, says Ann Bauer, a Salon essayist who recently wrote about

her autistic son 's violent outbursts. " I believe deeply that one

contributor to 's recent behavior is a system that treats him

inappropriately, " Bauer says. " We had an overworked and apathetic state

caseworker who consistently placed my son in homes developed for people with IQs

of 70 or below because she couldn't see the difference between this and

high-functioning autism. I'm not sure I wouldn't have gone insane myself if

housed in such a place. " Still, she does not solely blame the system for

's furious rampages. " This is not to say that I don't hold my son

responsible for his behaviors. He behaves cognitively and socially in a way that

is completely out of sync with the rest of our world. I guess what I'm saying

is, it's complicated. Is there something wrong with him or something wrong with

society or both? "

In theory, neurodiversity advocates fall squarely into the

something-wrong-with-society camp. The problem isn't that they or their children

are defective, their thinking goes, but that society simply isn't capable yet of

giving them the accommodations they need. In practice, though, many

pro-neurodiversity families take a more nuanced stance on therapy and treatment

than heated message-board debates might suggest. Safeguarding a child's dignity

and teaching him to navigate a neurotypical world, they reason, don't have to be

mutually exclusive. " Michelangelo has had a form of ABA three times a week, "

Commandatore says, " but it is so loose and we control and guide it. We just say,

'Look, we don't stop any stimming behavior.' But that doesn't mean you let him

do whatever he wants. If he's stimming and hurting something, you have to stop

that. You have to realize what is important and what isn't. "

Arriving at such realizations is easier said than done. While the autistic

culture movement may come off as dogmatic at times, Commandatore says the

question of how to raise autistic kids in the spirit of neurodiversity has no

clear-cut answer. Her child-rearing strategies don't radiate from a single

ideological core -- they're more cobbled-together, day-by-day solutions to

various issues that crop up. Instead of trying to train her son out of his

personality quirks, such as strong reactions to loud and sudden noises, she

says, " We've given him headphones that he can use in public, these big 1970s

speaker headphones. If he starts to panic, he asks for his headphones and we

give them to him. " She and her husband have also taught Michelangelo how to do

deep-breathing exercises whenever he finds himself in a stressful situation, as

he did this winter when his first-grade class began preparations for a holiday

singing performance. " He was nervous. He said, 'Mama, I don't want to sing.' "

Rather than making her son practice the songs over and over until they became

rote, as some therapists might recommend, Commandatore decided to give him a

choice. " I said, 'Look, if you don't want to try this, you don't have to. I just

want you to go up there and stand with your friends, and remember that Mama and

Papa love you and we will be here for you.' " Though Michelangelo was skeptical,

he agreed to give it a shot. When it came time for his moment in the limelight,

he closed his eyes and took a deep breath. A smile slowly spread across his face

as he burst into song.

[Guest guest]

This characterization below:

Instead of trying to train her son out of his personality quirks, such as

strong reactions to loud and sudden noises, she says, " We've given him

headphones that he can use in public, these big 1970s speaker headphones. If he

starts to panic, he asks for his headphones and we give them to him. "

-------------------

I want to beat someone over the head to beat it into them: it isn't a

personality quirk to flinch from painful stimuli!

[Guest guest]

" I want to beat someone over the head to beat it into them: it isn't a

personality quirk to flinch from painful stimuli! "

As good as a lot of articles are, they tend to screw up. I personally do not see

why it is so hard for people to grasp what AS is and how it affects people, but

I suppose that is because I have been given a higher IQ than the majority of the

population.

Administrator

[Guest guest]

I don't understand it either I feel I have something to give society if only

it would allow us the room to be who we are.

Chris

[Guest guest]

wrote: " I don't understand it either I feel I have something to give

society if only it would allow us the room to be who we are. "

I absolutely agree.

The reason people are reluctant to allow us to be who we are is because we see

in other people those qualities, both good and bad, that we ourselves posses.

This means that society chooses to interact with others who reflect good

qualities the individual himself or herself possesses.

If those good qualities are difficult to recognize, then ostracization occurs.

Because so few NTs understand the good qualities of Aspies, they default to the

behaviour they know best and almost subconsciously.

How wonderful it would be if people could just start trusting their gut feelings

and embrace the goodness within all individuals.

Raven

[Guest guest]

-

> Because so few NTs understand the good qualities of Aspies, they default to

the behaviour they know best and almost subconsciously.

>

> How wonderful it would be if people could just start trusting their gut

feelings and embrace the goodness within all individuals.

>

> Raven

>

Thats a fact I have had so many other folks I have tried to help with a great

idea or something and they get defensive or simply write me off.

Chris

[Guest guest]

Good afternoon:

Maybe someone does have a great idea,

but they have 'inner baggage' keeping them form pursuring it,

Then somene else (like yourself) comes along and offers to help the someone implement their great idea,

BUT rather than admitting that they have this inner baggage that they are allowing to get in their way, they get defensive or write off the potential helper.

OR maybe someone does seem to need help, and one of us offers what could be a great idea, BUT they don't really want a solution.

(MAYBE they want a different response, or sympathy, not genuine help)

An weird example:

A couple of weeks ago, my work partner said to me;

"I think this (copy of) map # 153 is too tattered to be legible."

(It had ben used 'in the field' by one of us, and put back in our file of maps to be given out)

so I said "just rip it up and throw it away."

She repeated her statement again, as did I,

The third time she repeated it, I snarled my reply,

She threw the copy away without ripping it up.

I snatched it from the wastbasket, and said "I rip up things like that so I don't forget and think it was thrown away in error," as i ripped it up with vigor.

(All this kerfuffle over a map that She could hav been thrown out )

When I told a friend about this,

she described a person she knows who will sometimes make a statement, she replies, the person makes the SAME statment again,

My friend has learned to break this cycle by saying someting else the second time.

My friend wonders if the person who repeats their statement is looking for a different resonse from us, but doesn't know how to change their statement to indicate that.

renaissanzelady

-> Because so few NTs understand the good qualities of Aspies, they default to the behaviour they know best and almost subconsciously.> > How wonderful it would be if people could just start trusting their gut feelings and embrace the goodness within all individuals.> > Raven>Thats a fact I have had so many other folks I have tried to help with a great idea or something and they get defensive or simply write me off.

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[Guest guest]

" I don't understand it either I feel I have something to give society if only it

would allow us the room to be who we are. "

Here is the irony of it: There have been times when I are someone I have known

have made valuable contributions to a conversation and given applause for our

great ideas, but later when it's discovered that we are on the spectrum, those

people suddenly say " Yeah, well, he's autistics, so maybe that's not such a

great idea after all. "

For lower functioning folks, I have heard people say " Gee, who would have

thought that such a retard could come up with such a great idea. "

The mere fact that we have a label sometimes hinders our abilities to be taken

seriously.

Administrator

[Guest guest]

" Thats a fact I have had so many other folks I have tried to help with a great

idea or something and they get defensive or simply write me off. "

I've noticed that quite often some people aren't willing to take on ideas they

haven't come up with themselves, or alternatively watch out for those that will

take your ideas and also the credit for. Sometimes even when someone comes up

with a good idea, another will not take it on board, because they personally do

not like it, or agree with it.

>

> -

> > Because so few NTs understand the good qualities of Aspies, they default to

the behaviour they know best and almost subconsciously.

> >

> > How wonderful it would be if people could just start trusting their gut

feelings and embrace the goodness within all individuals.

> >

> > Raven

> >

> Thats a fact I have had so many other folks I have tried to help with a great

idea or something and they get defensive or simply write me off.

> Chris

>

[Guest guest]

wrote: " ... <snip> ... " Thats a fact I have had so many other folks I

have tried to help with a great idea or something and they get defensive or

simply write me off ... <snip> ... "

answered: " I've noticed that quite often some people aren't willing to

take on ideas they haven't come up with themselves, or alternatively watch out

for those that will take your ideas and also the credit for. Sometimes even when

someone comes up with a good idea, another will not take it on board, because

they personally do not like it, or agree with it. "

OK, story time my friends. Pull up a piece of the rug and listen to my tale.

Once upon a time ... not that long ago ... oh, let's say in late spring 2006

because that's when this all began ... I came up with a great idea to raise

awareness of Autism Spectrum Disorders. I shared this idea with a select few

people, some of whom were Autistic themselves and some of whom were definitely

NeuroTypical.

Everyone tried to dissuade me from the path upon which I was about to embark.

" What you're proposing to do can't be done by one person and a handful of

volunteers, " roared an NT who was the General Manager of a local business

association.

" I just don't see how this can be done without having a large office of paid

employees to help you along, " advised a successful small business owner who had

never traveled farther than the Ontario borders.

" I don't understand how you're going to make this happen, " commented a very

close Aspie friend.

" It's not going to work, " my dearest Aspie friend said, trying hard to be

helpful despite the fact that he was delivering such awful news.

" That's a stupid name for your idea, " sputtered a great number of people who

were, in their opinion, far more knowledgeable about my area of perseverative

interests. " No one is going to understand what the name means. The name's more

of a handicap than the idea itself is! "

It didn't matter to whom I spoke, everyone wrote off my idea because none of

them were able to see what I had envisioned in my head. Some walked away

shaking their heads, muttering that I was setting myself up for a major business

mistake from which I might never recover; others watched on the sidelines, ready

to pick me up when the inevitable failure came about from creating something so

outrageous.

Three years later, I am on the eve of attending a luncheon where I have been

nominated for the 2009 Woman In Business Award in my city. It doesn't matter if

I win the title or don't win the title. It isn't about winning anyway.

MIDNIGHT IN CHICAGO is a successful tourism and culture initiative that raises

awareness of Autism Spectrum Disorders and Related Illnesses, and raises funds

for Autism organizations in the U.S. and Canada. Our Audio Podcasts on Autism

are linked to by over 600 Autism, Health and Medical organizations as well as

respected experts in the field of Autism Spectrum Disorders.

So what's my point in mentioning this, you might ask? Success boils down to a

few very basic points.

1. How much do you believe in your idea?

2. Have you done the appropriate market research to identify your niche market?

3. How much money are you willing and able to invest in your idea to make it

work?

4. How well do you understand marketing and promotion, and how do your

marketing and promotion plans fit in with your budget?

5. Have you written a business plan, a marketing plan, and a promotion plan to

keep you on track with your idea?

6. Do you have the courage of your convictions and are you able to ignore the

negative comments from others, some of whom you respect?

My dear friend who said, " It's not going to work " was a long-term naysayer,

going on about it for well over a year. However, as he saw my idea coming

together, he began to realize that the idea had serious merit and he began to

appreciate the fact that I had dragged him 'backwards through a knothole' to

make him part of the idea.

Yes, that dear friend -- the naysayer -- just happened to be and true to

his name (doubting ), he very kindly and sincerely was concerned about the

possibility that the idea would fail. Still, he got on board and created

artwork for Limited and Open Edition prints and Art Cards.

Even when we began to create the MIC Audio Podcasts on Autism, he argued with me

for several months on the format. In the end, he grudgingly agreed to write the

podcasts in the format I had outlined and once he was on board with this

particular format, the podcasts began to take on a life of their own.

As MIC progressed in the direction I had set for it, allowed himself to

see the idea as I saw it ... not blind to any setbacks but rather aware of

pitfalls so we could avoid them as best we could as we continued moving forward.

People who are visionaries (whether they are one time visionaries or full blown

visionaries) oftentimes find themselves on the receiving end of ridicule for

their ideas. They have the courage of their convictions to step out into the

void with as much research and passion and logical reason (so you don't spend

wildly on a money pit of an idea if this is what the idea becomes in time) as

possible.

Will visionaries sometimes fail? Of course, they will. Everyone experiences

failure in their lives at some point. However, I would rather take smart

chances and say at the end of my life, " I was willing to do my best " rather than

be afraid to dare to be different and regret it to the end of my days.

" Ordinary people believe only in the possible. Extraordinary people visualize

not what is possible or probable, but rather what is impossible. And by

visualizing the impossible, they begin to see it as possible. " (Cherie

-)

Progress results only from the fact that there are some men and women who refuse

to believe that what they know to be right cannot be done. ( W.

Davenport)

Raven

Co-Administrator

[Guest guest]

--

> " Ordinary people believe only in the possible. Extraordinary people visualize

not what is possible or probable, but rather what is impossible. And by

visualizing the impossible, they begin to see it as possible. " (Cherie

-)

>

> Progress results only from the fact that there are some men and women who

refuse to believe that what they know to be right cannot be done. ( W.

Davenport)

>

> Raven

> Co-Administrator

>

I like that I have enogh naysayers that I have spoke to

[Guest guest]

Raven posted two quotes: " Ordinary people believe only in the possible.

Extraordinary people visualize not what is possible or probable, but rather what

is impossible. And by visualizing the impossible, they begin to see it as

possible. " (Cherie -)

Progress results only from the fact that there are some men and women who refuse

to believe that what they know to be right cannot be done. ( W.

Davenport) "

responded: " I like that I have enogh naysayers that I have spoke to "

Please explain what you mean by this phrase. Your meaning is unclear.

Raven