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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, August 16, 2006

 

The Pill to Cure The Autism Divide

I’ve received positive and negative responses to The Autism Acceptance Project’s title “The Joy of Autism.” As expected, not everyone sees the joy in autism, at least not immediately. Many find autism a challenge and the joy of autism, elusive.

Yet, there is a tie that binds all parents, those of us who want services, education, and opportunities for our children. There is little difference between the devotion many of us feel towards our children, the daily commitment toward them in ensuring their success.

The difference lies in our attitude towards our autistic children. Is success defined within the frame of “normal,” or is it defined individually, without preconceptions? The idea of normal baffles me. In trying to define normal, I only come up with more absurdities.

When we believe that something is extrinsic of us, then we can blame something outside of ourselves, our children. For some parents of autistic children, it might be easier, although there is no scientific evidence to prove this, to believe that autism is a mask that shields the true child within, or that autism is a disease akin to cancer, waiting for a cure. To acknowledge that autism is as much a part of the child as congenital blindness or deafness, may be akin to telling a parent that their autistic child is dead. To acknowledge autism as part of the child may seem hopeless, but this project is here to show others that it is not. The devastation a parent might feel in light of these ideas, that their child will “never” do something that was expected, can be crippling, and may even lead to hatred, some of which will be directed towards this project that wishes only to preserve the dignity and opportunity for not only our autistic children, but also for adults who are speaking up. These adults are saying “autism is part of who I am.”

As a parent who has gone through the very same experiences of other parents, who has seen the devastating messages and videos, I asked myself, “how is all of this going to help my son Adam or my family? How will this effect his self-esteem, and the challenges of being accepted into the mainstream community? Ralph Savarese, a professor from Grinnell College, who has written a memoir titled Reasonable People: A Memoir of Autism and Adoption, stated,

“As a father of an Autist, I can tell you that feeling good about oneself is a big problem with autism. What do you say to an eleven-year-old who so understands the world’s intolerance of difference when he starts announcing on his computer at night, `freak is ready for bed’? Like other people with disabilities, some with autism have found that identity politics offer a vehicle for fighting discrimination and improving self-esteem. It locates the problem with difference where it should be: outside the self, in a world of ignorance and fear.” (p.13)

In other words, placing judgment of others outside of ourselves, is an important way to preserve self-esteem. This is why The Joy of Autism event is hosting the work and presentations of autistic people.

Judgment was the first negative experience we faced when going through the diagnostic and early intervention process. There are people who judged Adam from the outset, peering at him as a pathology. They became more focused on what he couldn’t do rather than what he could do. I wouldn’t say those are good teachers. A good teacher is one who can see the child for who they are, to find a entry point, to teach where a child’s interest lies, to understand the challenges and address them without using them to define the child. One seasoned teacher told me last night, “I became a good teacher when I realized that the content of what I was teaching wasn’t important, it was the child who was important.” Read that sentence carefully and find the profound wisdom in it.

Michael Moon, who seems in many ways non autistic today on the exterior, claims that he was very challenged as a young autistic child, and continues to find challenges as an adult despite his higher functioning. As a teenager he suffered chronic fatigue syndrome from trying to “fit in,” not yet understanding that he was autistic. “When I found out I was autistic, it was a relief,” he said. “I knew I fit in somewhere.” He says that at the age of twenty, when he found out about his diagnosis, the world shifted, and he was more able to become part of it.

“School didn’t help me,” he said. “Schools were more interested in how you followed rules rather than teaching.”

Brian Henson, an Asperger’s adult from Brantford, Ontario also relays similar pain from his school years. “Teachers only wanted me to read the text book. I couldn’t ask questions. When I wanted to explore something, they told me to just read the text or I would get an F.”

“We’re only teaching your child how to respond,” said Jim Partington to me over the phone, a few days before I considered flying him to Toronto. Adam was only two years old. He was not relating to us well, and consistently ran back and forth. I thought, that teaching Adam to respond was not the means to an end. I wanted to teach him how to relate to me, and to be happy. We succeeded with lots of play. Adam is extremely intelligent, showing his knowledge in variant ways, one being the computer. He can do all of the skills suited to his age, and then some. He has more difficulty responding in a typical way. While we teach him now that he is older, happy and with respect for him (not using normalization of him as a goal – semantics are important here), I feel that we are building bridges between his world and ours.

When Adam was at camp, his head counselor asked his shadow, “what is it?” in terms of his limited speech, to which his shadow wisely replied, “he’s a child.” What difference would it have made for this young person to know that he was autistic? Would it have furthered her understanding of Adam as a whole child, or simply categorized him as an incapable one? I continue to ask the question: does the autism label help or hinder? If it serves to support autistic people and have them regarded as whole people as well, then I can support its use. If it is used to paint a horrific, disease-identity, where an autistic person is refused by teachers, therapists, and others, then it is wrong.

Paula Kluth, Ph.D., formerly from Syracuse University, and an expert in inclusive education and US legislation cites a quote by an autistic person:

“All my life I was enrolled in classes for the profoundly retarded. The pain of that isolation, I can’t describe. Some classes consisted of putting together flashlights together and then they would be taken apart for the next day’s project. I never spoke or made eye contact. I hummed and self-stimulated. No wonder they though I was hopeless. I was always treated well but my intellectual needs were never addressed because nobody knew I had any intellect at all. Sad to say, many like me remain in that same hellish situation.” (Kluth, You’re Going to Love this Kid: Teaching Students with Autism in the Classroom, p.23)

If there is any social injustice in the world that does a disservice to autistic children, it is those organizations and individuals who continue to paint autism as a horrible way of living and being. These are the same organizations that could help with what is: the reality that there are autistic people living in the world, who need education, and that there are families who need to feel inspired and empowered, not constantly pounded with the message that their child is insufficient. This is the disease mind-set that is negatively effecting so many people. If autistic people suffer, it is not from their autism. It is from society who judges them.

Jim Sinclair acknowledges the process of parental grief stating basically, that although it is understandable, it is not right to take one’s grief out on the child. He offers some advice, being an autistic person himself:

“After you’ve started letting go, come back and look at your autistic child again, and say to yourself: “This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it. If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.” (from his essay, Don’t Mourn for Us)

I have to say that the turning point for me was when I began to read the books and essays written by autistic people and autistic artists who have found a language outside the written word: Lucy Blackthorn, Richard Attfield, Donna Williams, and so many others. Some of who can’t talk, and who have dealt with challenges, and society’s stigmatization of them for a lifetime. This stigma effects the entire disabled community, who despite their disability, want to be accepted and want the same things as you and I. The vast majority believe that disability means incapable. The idea that there is actually a sentient being behind the exterior of disability is intolerable to many, but precisely the opposite is true and must be dealt with head-on.

Over the past three years, and especially the past year, I have made an effort to travel to meet many autistic adults all over North America – some with “severe” autism, “Kanner’s Autism,” Asperger’s Syndrome. I have met adults who were mainstreamed into schools when schools didn’t know the word autism to the extent we do today. I have met others who were institutionalized in the 1950’s when it was considered shameful for families to have children with any disability. Some of these people, now adults in their late fifties and early sixties, said they were put on psychotic drugs and were treated poorly. One woman I met from just outside of Toronto was diagnosed with “Kanner’s Autism” has worked for thirty years since leaving a psychiatric hospital. As a child, she was placed in a facility for children with emotional disturbances. She managed to get married, drive, work and live her life as we all do.

Barbara Moran, from Topeka, Kansas (I am careful whose names I will use – I have received permission from some but not others as of yet), stated that she too was institutionalized. She says "just think of all children who were autistic placed in institutions back then, who we never hear from." Now in her fifties, she is extremely sensitive to noise and cannot work. She says she could have done better if she was accepted and allowed to go to regular school “where I could have been desensitized,” she notes. She says that the drugs she was placed on nullified her, and she hated being on them.

Larry Bissonnette, who uses a keyboard to communicate full sentences said to me “people who think your disability is an illness need to be cured of their ignorant attitudes.” Larry was also institutionalized until his sister saw how he was treated. She pulled him out and now lives with her, making art, traveling around the world on occasion. I met him and experienced his humour, his human-ness. Despite the challenges in communication, he is profoundly intelligent. It breaks my heart to receive emails from parents who cannot find the daily joy in their children, in these people who can teach us everything about autism.

Science has not yet provided any answers about autism, only more questions. Some science is unveiling the abilities innate to autism, thankfully, as it garners respect for a human condition, creating the needed bridge between so-called “different worlds,” to reveal that our worlds are not that far apart. As a parent who has sought answers from a variety of autistic adults, after hearing them tell me of their experiences, what worked for them and what didn’t, and the overriding message of each of them wanting to enjoy life, to be tolerated, understood and accepted by society, I had to ask myself what the point was in attempting to “normalize” Adam. For to do so would have meant that I did not value him as he was, or was unhappy with him.

No, autism is a challenge for the rest of us because we only see through one lens. We have to ask ourselves – is it the only lens? Is it the only way to look at autism? What of the autistic perspective? Is there a right way to be and a wrong way to be?

I’ve met parents who have revealed to me that “of all my children, my autistic child brings me the most joy.” This comes from two families I have encountered personally. Many others write about it: Paul Collins, Susan Senator, Valerie Paradiz, are some. It is something I strongly relate to, as Adam is my first and only child, my life, my reason for being, my utmost joy. Reframing my expectations of him has brought me daily surprises. I no longer expect myself in my pencil skirt and hat sitting at his Harvard graduation, but I also can’t say it won’t happen, or that I might not be sitting at his high-school graduation beaming at his success. As parents, we all know that the milestones our children do achieve give us monumental joy.

My husband likes to play devil’s advocate. I like that because I never think that there is one conclusion. Autism has revealed that to be human is living in paradox. He asks me, “So what if there was a pill to cure Adam? How are you gonna answer that?”

I can’t say that is an easy question to answer. Do I want Adam to suffer the stigmatization that a judgmental society will bring upon him? No, of course I don’t. I’m not sure if a pill could ever cure external judgment of him or of me for that matter.

Is autism curable? There isn’t one scientist that has proclaimed that it can be. In fact, the landscape of autism is so diverse, that one magic pill might not do the trick for everyone.

And if there was a pill? I just don’t know. To answer that question quickly is scarier than the question itself. Autistic people say that autism is a challenge, but still, they don’t want to be cured. Oliver Sacks once noted that we need to appreciate diversity in all its forms and called the brain “remarkable [in its] plasticity, its capacity for the most striking adaptations” as the “creative potential” of disease itself. People who have been medicated to the hilt, nullified of their experiences with neurobiological disorders, have suffered a marked decline of their creative abilities. I have to listen to this. We all do. If there was that pill, I would want Adam to decide, but even that answer is much too simple.

So do I deal with the reality of what is? Absolutely.

So now, I will reveal some of the responses, calling The Autism Acceptance Project “a political fringe,” to which I do not sigh, but perhaps acknowledge because eventually, a fringe becomes a mainstream. At least I hope that tolerance and acceptance will become mainstream. This project is about celebrating human dignity, potential and seeks to perpetuate respect so that we can ask for a variety of services and education to governments and teachers who just might see the individual potential of an autistic person. Waiting for a cure will not help us obtain services, support, vocational training. Governments will simply wait for those cures as a cost-saving measure.

Jonathan Lerman in Vestal, New York, is experiencing something akin to an team that enables his self-determination and empowerment, with support. It is a government-funded program. I cannot attest to how it is working, but the concept is interesting and might be considered. Jonathan basically states what he wants to do, and his team of people that support him, including his parents, ensure that his wishes and goals are realized. I believe that teenagers should continue to be supported with their peers, with self-image, that adults should receive vocational training, placement and support. I believe that inclusive education is a right, and that special education is also a right. Autistic people need access to a variety of approaches and educational opportunities. Above all, autistic people need self-determination.

How do the following statements encourage or hinder these needed services? To paint autism as a horrific disease waiting for a cure? Or an ability, a way of being, that deserves respect and opportunity to reach its potential? I am not revealing these responses out of disrespect for those who wrote them, or to create more divisions, but rather, as an opportunity for us to see the difference between empowerment/disempowerment in hopes that some may choose to find the same kind of joy and inspiration that my son has brought to our family.


Response #1:

I have to say; shocked is a mild word for my reaction.

As a parent of a child with autism, I applaud any effort to help the world understand this mysterious condition and the enormous strain it puts on those it afflicts and their families. However, to de-stigmatize autism with a sugar coating does this challenge a major disservice. Many of us actively advocate for those suffering with autism and accurate public education is critical. Making autism seem like “a happy place” doesn’t help our cause.


Response #2

While I am sure we all appreciate the benefits that accrue to children who are involved in artistic self-expression (and I am particularly sympathetic to this as a professional musician), this is an issue quite separate from the matter in hand - which is the choice of or tacit approval of the title "The Joy of Autism". This will not produce controversy, it will elicit fury. Parents who are trying to access funds and services, who are managing children with trying behaviours and who are fighting for educational equality do not want to have to deal with its implications.

What is next? Happy and Leukemic? Cancer is Cool? Incest is just another kind of love? I really hope you will not only appreciate the full horror of this gaffe, but do something public to acknowledge it! The good the event is certain to achieve will doubtless be diluted by the negative reaction from the autism community.

Response #3 (I apologize for the awkward spacing as this was taken from an email to me from Kevin Leitch of Autism Hub):

As parent to an autistic child considered to be 'classically' autistic
(other terminology includes low functioning/Kanners) one of the most
troubling aspects of the international autism community (by which I
mean the self appointed organizations of largely non-autistic people)
as oppose to the autistic community (by which I mean the organizations
comprised of a mixture of autistic and non-autistic people, or solely
autistic people) is the way in which a lot of people are opposed to
any attempt to present a non-tragic face to autism.

There is no denial that raising a child who has special needs is
difficult but it worries me that people want to compare an attempt to
look at a less negative aspect of autism to incest and cancer.

It seems to me that there is a large element of pre-judging occurring
here. Both in terms of what the event itself is and in terms of what
autism 'must be' for all people.

To me it is not only possible, but *vital* to separate the issues
concerned. Yes, a battle for services is important but it is of equal
importance to see that autistic people of any and all ages are as
capable and as entitled to joy as anybody else. I don't see this event
as an attempt to sugarcoat anything or to misrepresent anyone. If it
was I would not want to be associated with it.

Recently in the US, the organization Autism Speaks released a short
film entitled 'Autism Every Day'. During the course of this film the
only side of autism that was presented was an unremittingly negative
one. Children were badgered into meltdowns and situations, by the
admission of the Director, were manipulated to show autism in the
worst possible light. One segment showed a mother telling how she
considered killing herself and her autistic daughter to escape the
misery of autism. She related this incident whilst her daughter was in
the room with her.

Consider the differences between this film and the Joy of Autism
event. The film was made for an organization called Autism Speaks -
the organization wishes to push themselves as the voice of autism,
that they are they authority on the subject. This event is organized
by an organization called The Autism Acceptance Project - referring to
a project to promote acceptance.

The film is entitled 'Autism Every Day'. The filmmakers wish to
present the idea that the unremittingly negative subject matter is the
sole reality of 'autism every day'. By contrast TAAP's Joy of Autism,
by its very title, indicates focusing on one aspect of autism. It
doesn't seek to eliminate the negative, merely to accentuate the
positive.

I can't see anything wrong with that aim. It puzzles me that anyone can.

-----

If I want a cure for anything, it would be for these divides: misery versus joy; normal versus abnormal; acceptance versus intolerance for autism itself.

41 Comments:

Blogger Sam I Am said...

I would agree that the cure would be to end the divide. I can't imagine life without our youngest son who has autism. I am blessed that I have BA/MA in education and have worked with all children from different ethnic backgrounds, socioeconomic backgrounds, diverse families, and different abilities.

But...I think that one should be very careful to not judge the side that wants a cure (I am one who isn't seeking a cure). As a parent who is middle income in the United States, whose son does not qualify for state funding for services, who can not afford the $100,000 a year cost for private ABA services, who does not recieve nor afford any respite care or camps or summer school, I can see the other side of wanting a cure.

In our state, low incomce families receive medical assistance because they qualify. Their children can receive all the speech/OT/ABA that they need, and receive Personl Care Assistants (PCA's), respite care, etc...

In our state, very wealthy families can fund their own.

In our state, middle income familes can not.

I am the sole caregiver for our children and autistic son during the week, as my husband travels. We take our son to private speech/OT, but it is running out, as our insurance only allows so many sessions a year (they view Autism and Downs the same and say there is no proof that there is retention for these rehabilitative services). Our son is in an Autism program during the regular school year, but our district can not provide ESY services due to budget cuts, only "severe and profound" Downs children receive (which I am glad that they do).

I am blessed that I have educational training, I have patience and all the love in the world for our son, I have an older 9 year old that understands his brother, and that I have an incredibly supportive husband that helps when he is home. I can not imagine what life would be like for someone like me, who may not have a supportive spouse, who may not have education and training, to do it alone. Unfortunately, money speaks and helps when it comes to our children for services that help them blossom. Imagine no one qualified to help you so you can work during the day, imagine no special programs or camps for Adam, imagine not having the money to get a nanny or caregiver or ABA. I know funding and things are different in Canada, but just try to put your shoes in that situation.

I am thankful that God has given me the strength, education, patience, love and nurturing that I need to be the best mom I can for Sam. I find joy everday in Sam, I can honestly say that some of the "autism" things I can live without. I can live without him running away into dangerous situations. I can live without him hurting himself, others and objects when he is upset. I can live without the fact that he can not always communicate to me when he is in pain. I can live without the routines that can rule our lives, but I could never, ever live without Sam, I could never live without the part of him that makes our family complete, I could not live without the joy he brings to his brother. Quite simply, he is our event, "The Joy of Sam".

I thank you for your work. I thank you for your ability to draw awareness, joy and love for those with autism. This is not intended to draw any judgement on what you are doing (as a matter of fact, I would love to be able to come to the event). I just want people to remember that we must walk in other autism families shoes, if in fact we truly want to end the divide. It is what continues to define racism in the US. People make judgement and divide, instead of understanding and uniting.

May you have many blessings in your advocacy, may you open many more doors for those with autism to share their beauty. Godspeed in all you are doing.

12:56 PM  
Blogger notmercury said...

THANK YOU ESTEE!!

Wonderful post and possibly one of the most moving things I've read in some time.

I understand the feelings of shock expressed in some of the responses. It's a perfectly natural reaction when one is faced with a point of view that goes against everything you are feeling here and now.

I also know that opening the door just wide enough to consider a new perspective makes it possible to see things in a more positive way.

Joy can be found in everyone and every situation, if we know how to look for it. What life is full of constant bliss and free from hardship?

1:01 PM  
Blogger Estee Klar-Wolfond said...

sam i am,

thank you for your thoughtful response. I too can understand the situation. Parents and children do not receive enough support overall. Part of this project is to advocate for this in addition to finding scientific answers to what kinds of support will help people succeed as autistic people.

1:24 PM  
Anonymous Bonnie Ventura said...

Estee, I tried to leave a comment earlier and Blogger went loopy, so if two comments show up, just delete one.

A pill for intolerance... what a lovely thought. I wish life were that simple.

I haven't gotten any comments of the cancer and incest variety on Aspergian Pride, but then, I'm not as visible as you are. We are all very grateful that you are willing to speak out and to take the personal risks of public advocacy for acceptance.

1:51 PM  
Blogger ballastexistenz said...

The idea that autistic people become political about autism for our "self-esteem" completely misses the mark. And locates politics — something that has to do with power dynamics and relations between people and groups of people and so forth — right back in there in the realm of individual psychology, YUCK. I'm not political for my "self-esteem", I'm political because to the best of my knowledge it's the right thing to do. (And it's not just "identity politics" I engage in either.) I can't stand it when people try to take politics and fit it all into the realm of being about some kind of individual personal gratification.

1:58 PM  
Blogger abfh said...

I understood the quote about identity politics and self-esteem to mean that when discrimination is successfully fought by means of identity politics, the social environment becomes less damaging to the self-esteem of minorities, not that political involvement in itself raises self-esteem.

But it is a rather ambiguous quote. Estee, do you know what the author meant by it?

3:14 PM  
Anonymous Anonymous said...

As an autistic person, I can say that not all autistic people agree on everything about autism. I can't say I agree that self-esteem isn't an issue for autistics. How the world sees us has a great deal to do with how some people might view themselves. I think that Mr. Savarese's remarks about his son hold true for many of us growing up.

3:17 PM  
Blogger Fore Sam said...

The fact that you admit autism is a disability should tell you that the right thing to do about it is to allow the person to enjoy his life without a disability if it is possible. Would you deny someone a doctor to fix a broken leg or tell them to celebrate their difference?
Kids who can't talk and spend their day jumping and spinning don't have a clue what self-respect is. They need medical assistance to remove the mercury that caused their condition. This ain't about respecting a difference. It's about allowing children the treatment they need so they don't have to go through life with a disability. That should be your first option. If it doesn't work, then you can worry about respecting the condition. There will be no need for respecting anything for those severe cases who must be institutionalized for their own safety because they can't function at all.

3:18 PM  
Blogger Estee Klar-Wolfond said...

Hi ABFH,

Let me quote the entire paragraph that seems to be an issue here:

"Recently, in the New York Times, after a long series of articles bemoaning autism, an article appeared that reflects the kiind of perspective I'm advocating. Entitled "How About Not Curing Us, Some Autistics Are Pleading," the article spoke of a "growing number of autistics [who] are staging what they say amonts to an ad hoc human rights movement. They sell Autistic Liberation Front buttons and circulate petitions on Web sites like Neurodiversity.com to `defend the dignity of autistic citizens.'" It mentions Joe Mele, 36, "who staged a protest at Jones Beach, on Long Island, while 10,000 people marched to raise money for autism research recently. `We need acceptence about who we are and the way we are...That means you have to get out of the cure mindset,' Mele said. No matter how hyperbolic it might seem -- and to parnets of some children with autism it seems outrageous -- this perspective allows the Autist to feel good about him or herself. When parents objected to the disease-as-idenity framework, claiming that people with the most severe form of autism can't afford such precious politics, the three owners of autistics.org, a major Web hub of autistic advocacy, issued a statement listing their various impairments. None of them are fully toilet trained, one of them cannot speak, and they all have injured themselves on multiple occasions. They wrote, `We flap, finger-flick, rock, twist, rub, clap, bounce, squeal, hum, scream, his and tic.'

Shocking this celebration of dis-ability and staunch refusal to apologize for autistic `behaviors,' (the very thing that a major form of therapy seeks to eradicate). Now, while you might not want your child to be diagnosed with autism and while you might work assiduously to amerliorate its impact, you'd certainly want, if faced with a diagnosis, for your child to feel good about himself."

Then he proceeds with the paragraph I used in this piece and begins the next paragraph..."and yet, for all the recent progress in how we conceive autism, a dire medicalized view continues to prevail..."

Savarese adopted an autistic child.

3:29 PM  
Anonymous Anonymous said...

Fore Sam,

I am an autistic person and take offense at your comment. I live outside Toronto. I do not want to be cured although it seems you want to cure me.

3:31 PM  
Blogger Joseph said...

Estee: That was moving and thought-provoking. Too bad Fore Sam had to show up and ruin it. I'd suggest completely ignoring what he has to say - anyone can see it makes no sense politically or scientifically.

On the point about self-esteem, I would suggest that self-acceptance is a better term, given that self-esteem is basically medical. It is true that stigmatization hinders self-acceptance. There are autistics out there who have been taught self-hate and seek to be made "normal" because of that. As a minority group we should have a right to not be stigmatized.

4:01 PM  
Blogger Kristina Chew said...

The true joy of autism is that we learn, through our children, that there are so many different and possible paths to lives lived well; that "going to college" (esp. a rather famous one) is too often equated with "success"; that autism enables us to see what we had missed all along.

4:28 PM  
Blogger ballastexistenz said...

No, it's this paragraph, Estee:

“As a father of an Autist, I can tell you that feeling good about oneself is a big problem with autism. What do you say to an eleven-year-old who so understands the world’s intolerance of difference when he starts announcing on his computer at night, `freak is ready for bed’? Like other people with disabilities, some with autism have found that identity politics offer a vehicle for fighting discrimination and improving self-esteem. It locates the problem with difference where it should be: outside the self, in a world of ignorance and fear.” (p.13)

4:46 PM  
Blogger Estee Klar-Wolfond said...

Ballastexistenz,

ABFH asked for the rest of the paragraph which is what I provided for more context. I've mentioned in previous comment where the one you have cited fits within that context of what he wrote.

4:56 PM  
Blogger Fore Sam said...

This comment has been removed by a blog administrator.

7:17 PM  
Blogger notmercury said...

Fore Sam: Kids who are biting themselves and drawing blood don't feel good about anything and they are entitled to medical assistance.

On this you are correct. The same would be true for any person who is in danger of harming themselves or others.

If you find that medical assistance is less than forthcoming it may have less to do with your child being autistic and more to do with your insistence that he was mercury poisoned by the same medical establishment you turn to for assistance.

Lose some of the anger and blame and you may find that your pleas for help, including these blog comments, are met with a more receptive attitude.

8:16 PM  
Anonymous Anonymous said...

Creativity and growth lies between the head and the heart. heart. When you try to express it you will most likely find it frustrated, castrated or killed off. Creativity is always subversive and so, unless it finds a passionate voice, is destined to be excluded from the bureaucratic systems of approval.

Scorpio

8:25 PM  
Anonymous anonimouse said...

Geez, Fore Scam - slow day at the track or did your tee time get rained out?

9:50 PM  
Blogger Shawn said...

Estee,

I think your bridging the divide by using your energy and talents to instigate change. There's no magic pill for curing the divide. I'm convinced a lot of patience is necessary. And we can't sit back and wait either, we must go out and make change, each in our own way. You are certainly doing your part!

10:13 PM  
Blogger abfh said...

Thanks for posting the rest of the paragraph, Estee.

Coincidentally, I just blogged about why autistic activism should not be described as disease-as-identity.

10:14 PM  
Blogger Bramblebrae said...

Too often now I see people arguing back and forth the right political spot involving autism. Why are you all wasting your energy with this. People all live in their own lives no one can say 'your wrong' not unless they have walked in the others shoes. One parents experience with their child with autism or autistic child or whatever other term you find appropriate can be so different from anothers they are incomparable. People are having an emotional response to very emotional issues, we are not all born equal NT's or auties or aspies and some parents either have more difficult circumstances for whatever reason and do find it harder to find 'joy' in their child, some parents find it hard to find 'joy' in their NT child because of their own personal circumstances. No one is right here, no one has the higher moral ground, we are all individuals isn't that what your main basis of the pro autism movement is all about? Personally I have read as many positive articles/forum posts etc as negative ones on the subject and quite often it's from the same poster, there are good days and bad days in everyones lives and our comments and thoughts are highly influenced by this. Healthy debate is one thing but is this really healthy? judging each other? I hope everyone is well and can find joy in all their children and all other people everywhere.

11:52 PM  
Blogger Alyric said...

Hi

This is a wonderful post. Thanks:)

Something i find quite bothersome are the practical consequences of non acceptance. That's me - pragmatist to the bone:) To be blunt about it, unless the person, autist, alien with pink stripes, whatever, has a bone deep acceptance of who they are, there is no hope that they will succeed in this world. The social dance dictates that your acceptance/non acceptance is largely ruled by your own valuation. Since there isn't a choice, one might as well teach how to learn and accept oneself - the good and the not so good. That cannot be controversial surely?

3:09 AM  
Blogger Joseph said...

Too often now I see people arguing back and forth the right political spot involving autism. Why are you all wasting your energy with this. People all live in their own lives no one can say 'your wrong' not unless they have walked in the others shoes.

Why did people "waste their energy" in prior civil rights movements?

10:33 AM  
Blogger Lisa/Jedi said...

Exactly, Joseph! The louder voices tend to determine the attitudes in our society, so we who have a dissenting point of view do not waste our time by speaking up.

A disease paradigm for autism is just plain wrong, to my thinking, &, as an incest Survivor, I find the incest reference to be particularly odious. Those who belittle others to try to make a point do everyone, including themselves, a disservice.

My family has taken the "acceptance" pathway & we are constantly rewarded by it. Why live life as a battle? When you choose to see the ups & downs as challenges to be overcome together, you affirm the competence of your whole family, including the member with autism.

Thanks so much for your essay, Estee! I plan to bookmark it so I send it on to others as necessary :)

10:49 AM  
Blogger Do'C said...

Estee, this is a wonderful post - thank you. It truly escapes me how egocentric some of the criticism can appear. It really see your posts as advocating for the future and a new model for the societal peers and our children who will share the world. Rome was not built in a day, and you are laying great foundation - even if it is years in the making. I salute you.

11:54 PM  
Anonymous Anonymous said...

Bravo, Estee! I commend your refusal to give in to rigidly binarial
thinking. Why can't a child with autism be BOTH a joy and a burden? It
just so happens that we live in a society that almost exclusively
pathologizes this condition, so Estee's commitment to joy is at once a
rhetorical maneuver that rights the imbalance and an affirmation of being in the world, whatever the particulars. To think of disability as a kind of ethnicity, which is to say a difference to be praised, reminds us of the socially constructed effects of the ways we choose to represent autism. To call it a "devastating disorder" may facilitate better funding for a cure,but it also teaches parents to lament their children's difference and perhaps underestimate their potential. If Black is beautiful, than disability can be divine--at least at times and certainly as a function of
every human being's intrinsic worth. Difference, even of a neurological
sort, is a good thing, however enervating and annoying. (I am the father afourteen-year-old non-speaking boy with autism, a boy who uses a computer to communicate and is presently a straight "A" student at our local middle school.) Remember that Temple Grandin, perhaps America's most famous personwith autism, when asked if she wanted to be cured, declined, explaining, "Iwouldn't be me." Let's all remember that sophisticated thinking, likegenerous living, demands complexity. (Grandin takes drugs to alleviate someof the effects--anxiety for example--of autism.) It's too easy to be reductive and thereby demonize a provocative gesture.
--Ralph Savarese

9:30 AM  
Blogger Natalia said...

just wanted to mention this as i think nobody else has, only i may have missed it, becos i was skimming the comments:

autism is not like incest because incest is a crime and a sin. autism is neither.

also, autism is-and-isn't a disability, but as the disability rights people point out, nobody is completely 100% able to do everything or we would all be 'superhumans' (which word exists precisely becos pretty much all humans are not superhuman). ie: everyone needs some outside help to do some things. therefore there are some limits and impairments in everyone. some of these are classified as disabilities and if we have those we are seen as less-people but this is not a good way to look at other people, because who decides which ones are disabilities and which are not? there is some logical and ethical problem here.

10:44 AM  
Blogger Natalia said...

PS: more than a disability, autism is a "forma de ser". we don't have that word in English but it's like a way of being, a meaning somewhere between "personality" and "modus operandi".

(of course, we can say it's several or many different "formas de ser", due to natural variety of people in the autistic / human spectrum).

10:47 AM  
Blogger Nathzn said...

Fore sam,

being NT could be considered a disablity check out isnt.autistics.org

1:09 PM  
Blogger Kevin_1000 said...

The "forma de ser" will depend on the severity of the autism.

3:13 PM  
Blogger Redaspie said...

Estee - just found your site, and this is an *excellent* post you've just written here. The 'Joy of Autism' is a great one and I hope you get an audience of thousands. I intend to blog about it on my blog, probably tomorrow. I intend to make a few comments about the kind of initiative it is and so on from my own perspective. I would agree with Amanda that politics is about power relationships, and that an event such as 'Joy of Autism' although very useful won't move autistics or their carers towards ending discrimination. Good luck with it!

6:20 PM  
Anonymous Anonymous said...

What I want to add to what was written there is that everything that you have said and all the things that the writers that were in institutions have said are true not only in relation to individuals with autism but also to ALL people with disabilities. In the past, individuals with intellectual and developmental disabilities, (termed in the past as being mentally retarded) were placed in institutions without any hope for meaning or acceptance. Similarly, individuals with physical disabilities such as CP, were also treated in exactly the same way. Kids with Down Syndrome, like my Mark, were placed in institutions and passed their lives without any meaning or purpose and without having any hope that someone will “recognize” them as human beings full of feeling, wishes and hopes.

I know that your focus, and partially mine, is autism and that this is what THIS is all about. I just wanted to say that for me this whole thing of acceptance, love and joy is wider than autism. It is the acceptance of who we are and the way we are that is my focus. It is the love that we feel and it is the focus on what we can do rather than the gloom of what cannot be done that is my goal. At the same time it is also the understanding that there is diversity and that others might feel differently that I believe we need to take into consideration. I believe that we need to advocate for this and maintain our openness to the fact that others might think, feel experience the same in a different fashion. (and I am not suggesting that you don’t).

With education and with the work that we do, we can continue and promote the abilities and talents of all people who society judges as incapable and as a result marginalizes. From this point of view- inclusion to me means acceptance regardless of whether the child is in a regular school or in a special education treatment centre. As long as the child receives what he/she needs to actualize his potential and as long as he/she is treated with respect and with support, rather than being in the halls because he/she are disruptive to the other children in the class; the school the child is in is immaterial. What is important is that the child, or adult, will have the opportunity to fulfill his/her life the way the want it. Our role in this matter, is to enable this to happen without projecting on the child our limited imagination or limited belief system.



Nehama Baum, Ph.D.
Founder and Executive Director
MukiBaum Treatment Centres, Toronto

9:08 AM  
Anonymous Anonymous said...

Jeanette from Austin, Tx wrote:

As the mother of 5 autistic children, we also would not change them. Who would they become if they were "cured".
I feel sorry for the children who are going through all the heinous interventions so there parent's can have "normal" children. How sad they must be to feel they don't live up to their parent's expectations of who they should be.
Our children amaze us every day. They are vital to our schools and community. They are loved by all that they touch.
I am so happy for this project.
Let me know how to help spread the word.

9:24 AM  
Blogger Estee Klar-Wolfond said...

There is a brochure in the media section at www.taaproject.com.

Also, a video will be released later this week. It is not a long video, but intended to shift popular misconceptions, and respect everyone. You will be able to send it to everyone you know.

9:29 AM  
Blogger ballastexistenz said...

The viewpoint that nobody is right or wrong, is itself a viewpoint that claims to be right, and always seems utterly nonsensical to me.

6:58 PM  
Blogger Jonsmum said...

Thankyou to bramblebrae for giving us your, plain-spoken, insightful and objective opinions.
They are refreshing to hear.

I agree with what you are saying but find it very hard to be non judgemental in 'my views', when there are people like ballastexistenz, who cannot resist 'having a go' at you for expressing such open minded and constructive views.

8:12 PM  
Blogger Jonsmum said...

notmercury;

With reference to your comment to fore sam on kids who are biting themselves and drawing blood.

"If you find that the medical assistance is less than forthcoming it may have less to do with your child being autistic and more to do with your insistence that he was poisoned by the same medical establishment you turn to for assistance".

NO: The 'medical establishment' have a duty and responsibility to assist those children they are guilty of poisoning with mercury!

5:36 AM  
Anonymous Anonymous said...

Surely you experience *some* joy in relating to your autistic kids, no? If the answer to that question is "yes, of course we find joy in relating to ourautistic kids, but what we find joy in has nothing to do with autism", then youprofoundly misunderstand autism. Autism is *more* than just the negatives, the deficits and delays. It is also subtle yet pervasive differences in cognitive style, sensory processing, experience and expression of emotion, and aesthetic sensibilities, that continue to be part and parcel of the individual even if the less-than-subtle deficits and delays are overcome. So if you *do* find anyjoy at all in relating to your kids, you are indeed finding joy in autism. Youdon't sacrifice any vigilance or energy aimed at overcoming the deficits anddelays, by acknowledging and celebrating those aspects of your kids' way of being that are different from the norm. You gain a *lot* though, by doing so:by seeing the world through your kids' eyes, you begin to learn what to do about the deficits and dysfunctions of the society around them that need to beovercome just as much as their individual deficits do, in order for them tohave the best possible quality of life. If you think "that stuff may make sense for some articulate adults on the spectrum, but it's irrelevant for our kids", think again: if your kids succeed beyond your wildest dreams at overcoming their deficits, they're going to grow up to become adults like *us*. Our concerns and points-of-view -- and joie-de-vivre -- are going to become *very* relevant to you as they mature and succeed. The sooner you join us, the better prepared you will be for that future. And doing so does *not* have to come at the expense of vigilance or energy aimed at overcoming your kids' difficulties at present.

Phil Schwarz

6:56 AM  
Blogger Flea said...

I support you 100% and wish you all the best in your project.

best,

Flea (a real-live pediatrician!)

7:39 AM  
Blogger S.L. said...

Bravo, Estee and Thank You! I hope TAAP can do some shows/programs here in the U.S.

9:42 PM  
Anonymous Anonymous said...

Sometimes, it seems like a fight between the hopes of parents and the needs of the children. I might be unique in that I am both the (natural) parent of several autism-spectrum children and probably on the spectrum myself (my wife doesn't want me evaluated because it might affect my high-paying job). I was told when my oldest son (15) was diagnosed that it wasnt' anything my wife or I had done, but that was just toughtless. I know I am the guy passing these genes on.

As for the potential cure, I don't think it will ever come. Parents will continue to be fleeced and be willing parties to wasting their child's life with endless pressure to conform to the desires of others. Maybe some time should be spent trying to figure out what this child is actually good at and building on this, rather than obsessing on their weaknesses. Why not spend your money on a cure for a parent's fear of what the neighbors will think? That would really make everyone a lot happier.

Would you like to listen to a podcast from a family of autistics (well, most of the family) that looks at the world through their eyes? Go to The Life Autistic and listen in!

11:22 AM  

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