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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

Monday, March 27, 2006

 

Awakenings

Adversity’s sweet milk, philosophy.
William Shakespeare


Awakening is process. Some people stay asleep their entire lives. Others have mini-awakenings and slip back into old habits and ways of being, simply because thinking outside of boxes seems impossible, and still others have major awakenings because of what life thrusts upon them. Whatever the cause, whatever the means, the point is to wake up.

This past week, I’ve had a series of conversations, with different people I know well, who have raised questions in me on how to advocate for autism, as it is most complex and challenges our everyday notions of how we live and raise our children. It also raises a personal issue in me about the meaning of friendship. A while ago, I wrote about advocation as the Sledgehammer and the Song, stating we need both styles in advocating for the rights of the disabled. Back then, I was taking a softer stance, trying to be the song, and others with autism challenged me in a positive way. My awakening can be read right here on this blog, in black and white. Awakening begins with an agitation that something is not good enough, and the process of action takes a little longer to develop.

I’ve been gentle with friends who have hurt me with what seemed like harmless comments. Afterall, there was a life before Adam, and that kind of talk didn’t bother me then. Isn’t the onus on me to maintain the friendship as is? I’ve had to think long and hard about that one before writing about events that have shaped our family journey with autism. By my 41st birthday last week, I decided that life is too short and that honesty and writing my story is an important process for me and for others. It is also important to figure out who will continue to stand by me in these important moments that have come to define, in large part, who I am. If I continue to call people “friends,” and I give my time and my heart to them, then I need to make sure they know for what I stand. I like to think that if you are honest with someone, the truest friendship can spring forth, if of course, the person wants to stand with you, and we are all willing to listen to each other. I suppose if I am honest with a friend about how I feel their comments and behaviour have effected me, it means that I believe that that friendship has a possibility to grow into something much more profound. So too, I am open to hearing about all of my follies as much as another lovely friend lifted up her arm in mock breast examination mode and laughed, "Oh no! I've just found an emergent ideology!" It was funny and while I wouldn't call these ideas a cancer, I do claim they can often be more cumbersome than my monthly PMS.

Trouble is part of your life, and if you don’t share it, you don’t give the person who loves you a chance to love you enough,” said Dinah Shore. I like to think that autism isn’t trouble, but it is a fundamental shift in the way I've come to live.

Time has a lot to do with shaping opinion. It is doing a lot to slowly change the attitudes of people towards disability. In a conversation with a family member this past weekend, it left me considering the reality that advocates and people with disabilities are facing.

At a party on Saturday night, I grabbed my crantini, enjoying the people and approached a familiar face. She asked me what I was up to, and to be safe, I said “a little bit of this, a little bit of that,” shrugging it off as mindless party babble. I mean, I don't want impose my "emerging ideologies" at every single social event. Even I need a reprieve! But she probed me a little further, and asked if I would be organizing another exhibition. She got me going about the Canadian Autism Acceptance Network, the organization I am in the process of establishing to organize lectures and events that will change the message that autism does not necessarily need to be cured, but rather, needs to be supported and accepted.

“Why wouldn’t you want to give Adam a pill to cure his autism?” she looks at me as if I am a crazy, irresponsible parent.“To me that seems ridiculous,” she scoffs, drink in one hand, her other hand dismissing me with a quick flick in the air.

“It is not for me to decide. It is up to the person with autism,” I say. “People with autism say they do not want to be cured, they want to be accepted as they are.”

“Well what about the people who can’t decide? I think it is up to the parents,” she sums up quickly. “The child should not be a burden on the rest of the family.” I am not making this up, folks.

I am taking a couple of big swigs of my crantini and turn to Henry who is signaling me to cool down, knowing how passionate I tend to get. “Get me another would you?”

Her face is becoming ascetic, and she is on the attack. “It’s fine for you, you have the means to help Adam,” accusing me of sufficient resources, which translates into more respite, I suppose. “Consider all those people who don’t have the money to help their children,” assuming that they even need the kind of “help” she is inferring.

Of course I have to assume this family member possesses the following presumptions: that I hand over Adam to others, and that raising him is not an active process for me and, that other parents who have less means are incapable of raising children who are not “normal,” or more appropriately stated, challenged, without listening to hundreds of countless stories from them and the daily work they do. Like many of us who do not have to actively engage, she is full of arm-chair opinions.

I slowly begin to draw my sword, as her words have wounded me and I’m not one to cower. “That is why we need to fundamentally change attitudes about difference, so we can get supports in schools, in places of employment,” I try to say calmly, failing miserably, as the pitch of my voice gets a little higher and more intense.

“I don’t want my kids being held back by kids with special needs,” she said to my face. I manage to compose myself enough to think of a respectful response despite the kick in the stomach she just gave me.

“That’s a problem,” and then I get nasty, “because my kid just might be smarter than your kids,” ouch, really low blow. “I’m sorry,” I backpaddle quickly. “It’s just a point, I’m not saying your kids aren’t smart, but I believe it is a right, and is a necessity to mix people of differences so that we can transcend that kind of attitude.” My face is visibly red. She is saying, in essence, that Adam needs a pill to be cured of his autism, that I am an irresponsible parent for not wanting to cure him, and that people with autism should be aborted. She further assumes, perhaps, that like her, I am a couch philosopher, whose opinions come out of nowhere, and I don’t spend countless hours researching and thinking about this.

“I think people should be able to abort if they learn of disability or autism,” she starts again. “I believe people should have a choice. There are families who fall apart over these things.”

“I agree, there are some families who fall apart -- with these things and many other things, and in our culture, it seems ludicrous to not say that choice is a right. But I don’t think there is enough information about what the choices are.” When I was shuffled into a genetic counsellor’s office, they told me the stats, but not anything about what quality of life I would have. I assume also that most people out there fearfully believe that one’s quality of life disappears after having a child with a difference. If I had been told autism when I was pregnant, I wouldn’t have known about the unique gifts and changes in my life that have resulted in Adam, and sadly, he may not be with us today. At this point, I would not change a thing accept the attitudes of people who will effect his life.

At another party, a friend asked me “Okay, people who are high-functioning say they don’t want to be cured, but what about those who are low-functioning?” This is a friend who always asks me frank questions, but I really want to correct her about the functioning issue. While in reality she is right, there are people with more and less handicaps in society, the issue has nothing to do with one’s personhood or inner life or level of intelligence. If we are going to define disability into spectrums, let us do so only in the name of providing supports.

“Some `low-functioning’ people are actually not what you think they are.” I am agitated with my own answer. It seems to be the only way I can segue into the tougher issues of simple acceptance, no matter what level of disability we're talking about. “If they find another means to communicate, like typing, you will discover that despite the challenges, they too do not want to be cured, but just accepted and supported for who they are. Also, a lot of issues you think are autism, aren’t autism. There are co-morbid issues like epilepsy.” But I haven’t gotten to the crux of the matter, and I do not know what it is like to be “severely” impaired, either. I only read the materials by those who are, and meet them, to learn what it might be like to be them.

In terms of advocating for autism, making way for the final point, making autism more acceptable is how it manifests, and usually peters out there. “Einstein had autism,” is not intended to make Adam and people like him more acceptable to a society that has difficulty thinking outside the box. It is to say that there is so much human potential that remains untapped because people with disabilities are not presumed competent – they are judged for how they look, how they behave, and what they cannot do. If we continue to do this, we may be getting rid of all the Stephen Hawkings’ of the world. Likewise, those who are not like Hawking have a right to be here and have a right to find ways to enable their Identity and find personal fulfillment. I am a believer that just because one is severely disabled, doesn't mean they do not deserve to have a full life. Certainly, the onus is on the society-at-large to ensure that they can have it. For the rest of us, the assumption that they, the severely disabled, feel nothing but pain or are unaware and therefore sub-human, is a terrible assumption to make.

Yet another friend this past week read my blog and accused me of self-pity, despite the posts “The Economy of Pity” and “Now What?” I found that accusation a little surprising, actually. This is not a move to seek vendetta for any previous comments that may have hurt me. Instead, this is a dialogue that means so much to me, my son and to others. The point is to have others consider their embedded views and assumptions about disability. I retaliated in an email stating that accusing me of self-pity is like saying the Jews victimize themselves when they raise their own human rights issues and anti-semitism, no different than women complaining about their equal rights, and not so unfamiliar in the example of African Americans fighting white oppression.

Most people would prefer to sit comfortably visiting exhibitions, to view ability, savantism – the sensationalized view of the autistic so that it is at least understandable, dare I say, palatable. They would prefer to be inspired by my words of ability instead of suggesting that we all have to look at ourselves, our collective history, and how this effects our thinking and way of living. The latter requires active engagement by people never wanting, or needing based on circumstance, to actively engage. When another party, the Jews, the blacks, the gays, impose their desires as a community who feel entitled to the same respect and civil rights, and it touches us in the sense that we will be effected in how we live our own lives, where our money goes, and the semantics we use, many of us jolt negatively. The former method of advocacy, the more passive approach, is an easier one where one has to do nothing and the onus is on the disabled to prove themselves worthy to co-exist in a society dominated by so-called "normal" people.

There are inherent dangers purporting this kind of safe message so we don’t offend others. Yet there are millions of people who are differently-abled, who deal with prejudice and sereptitious, or “unintended” discrimination and prejudice every single day.

So I’ve taken my “awakenings” public. I consider every single day in whose name I do this -- if it will positively or negatively effect Adam. I’ve come to the conclusion that an awakening is a call to act. It is a moral obligation. Instead of confined within the walls of academia, universities, we need take the issues to the street --the reformed eugenics movement, medical genetics, bioethics, and the idea of perfecting ourselves -- all of this needs to be considered in how our endeavours in the name of consumerism and progress are still aimed at perfecting the human race. (Joan Rothschild, The Dream of the Perfect Child):

By mid-twentieth century, eugenic discourse had shed its racist rhetoric and supporting genetic justification, thanks in part of evolutionary biologists and the realities of a post-Holocaust world. The movement gained a new respectability and was recast in positive terms, as seeking to improve the entire gene pool and de-emphasizing the coercive measures central to the old eugenics. A reformed eugenics rediscovered the role of the environment, which was joined to biology to bring evolution back into perfectibility discourse. But perfectibility discourse, as redefined by the scientists and reformed eugeniscists, still sought to use genetics to control procreation, now extended to control cultural evolution. The new eugenic rhetoric, however, had little connection to medical practise. It was not until medical genetics developed as a clinical specialty in the late 1950’s, providing physicians with new tools to identify and help prevent disease, that the door opened to introduce eugenics into reproductive practice. But, by the 1960’s, a new generation of doctors did not have a eugenic agenda. The irony was that, just as even a reformed eugenics lost its following, reproductive medical practise gained the tools to mark and weed out the imperfect, according to medically defined criteria.” (The Dream of the Perfect Child, p.52).

Let me move to Orange Life, a magazine distributed by Canada’s national newspaper, The Globe and Mail. The magazine is about fashion and beauty and dedicates a few pages to un-cited statistics, splattered artistically over its pages. I read the stats, thinking about the ideas of late, and one in particular jumps out at me: “1 in 10 would abort a child if they knew it had a genetic tendency to be fat.” Then another, “80 to 90% of women dislike the size and shape of their bodies.” “Canadians spend $5.3 billion on cosmetics annually.” “Americans spent just under $12.5 billion dollars on cosmetic procedures in 2004.” “Young girls have indicated in surveys that they are more afraid of becoming fat than they are of cancer, nuclear war or losing their parents.” This list goes on, within these glossy magazine pages that spead out pages of thin, lanky models with perfect skin anyway.

In 1947, The World Health Organization defined “health” as coextensive with quality of life. Health was defined as “not merely the absence of disease, but a state of complete physical, mental and social well-being…. That definition which set no limits on the scope of health policy or health care, was widely criticized and, though it remains a piece of interagency political rhetoric, plays no scientific role even at that WHO.” (From Quality of Life and Human Difference, David Wasserman, Jerome Bicekenbach, Robert Wachbroit). The authors argue that this definition assumes that the lives of people with disabilities is of low-quality -- that the treatment [by WHO] of the personal and social challenges of people with disabilities and health problems creates a demeaning impression of the impact of impairment. It is the basis for the “pro-choice” movement, as people assume it is “cruel” to bring a child with difference into the world, and that their quality of life is significantly impaired. Ultimately, the source of genetic research and identifying human genes is to reduce the cost of supports for the disabled, in the environment, in the schools, in the workplace – and therefore, to create a perfect, selected race.

I can’t tell you how many parents, friends, have said just as matter-of-factly to me that they don’t see how children with disabilities can be integrated with supports in schools with their children. “It’s too expensive... it will require too many resources... teachers can’t handle it,” are common arguments I hear. In fact, as my family member said to me, most people believe that the disabled will pull their own children down. Yet, not everyone will say that out loud.

I argue that we will achieve a more compassionate race. I argue that these ideas of success and achievement are limited, and people need not fear people of difference. Fear is best killed by familiaritiy, I always say. I argue that we all need to reconsider, as parents and people with disabilities or not, what quality of life really means and how we want to re-define it for future generations.

Near the end of the party and my week of last, I thought of drinking my worries,and all this adversity away. Then, I had a conversation with a family friend who has a child with Cerebral Palsy and it was like meeting with an old friend bathed in sunshine. Once you have a child with a challenge or “handicap” (a handicap means that the source of the problem is in the environment, not the person. It means that if I have hurt my leg and it is a requirement that I climb a staircase without a rail, I am handicapped), there is an innate understanding between people, who accept and love their children for who they are amidst a society that doesn't. Not all parents do this, but there are many I have met who do.

“How do people’s attitudes about disability affect you, has it effected your friendships?” I ask her.

“You get used to it,” she says. “Some friends will stick with you, others can’t handle it. You end up making new ones.”

“Hmmm,” I nod knowingly, cradling my last martini of the night.

“Last year P had a series of bladder infections because her teachers didn’t take her to the bathroom. We had to ask them to take her and now her infections are gone. They just assumed she didn’t have to go, but she won’t make a sound or verbalize unless you ask her. Advocacy becomes part of your everyday life.” She purses her lips and smiles. There is a little bitterness in the journey to acceptance as our intolerant society inflicts the exhaustion.

“She has such a sense of humour, P,” said the mother, "She's wonderful."

I am not just a parent with an opinion. I am a parent listening to people with autism, listening to them to guide me in the process of raising Adam, and in the very messages that need to be heard about good and bad science, how to teach, how to parent a child who feels and perceives differently from me, and who are defining what quality of life means for them. I like to think I have an informed and evolving opinion.

I ask all of my friends, even those with countering opinions, just to come and listen. This is not an attack. We are all at different points of awakening. It’s a process. There is a community of differently-abled people who want their “label,” their handicap, their disability, to be as commonplace as saying someone is black or white. The only purpose of the label should be to acquire the supports one needs to function and be accepted as just another human being in this world.

“Are you Estée?” a woman with a warm face approaches me on the dancefloor.

“Yes.”

“I just want you to know that your name came up in my book club when we were reading A Curious Incident of the Dog in the Nighttime and someone suggested that we read your blog.”

“Really?” I am dumbfounded and a little tipsy from the three martinis I’ve downed with debates.

“I want you to know that I really enjoyed reading it. It is really important what you are saying.”

Now that, my friends, is the reason for all of this. Cheers and good-night.

30 Comments:

Blogger ballastexistenz said...

What I really can't stand in those conversations, is when they are tossing issue after issue at you. ("What about low functioning people? What about bringing my child down? Selective abortion? Etc.")

And each issue would take a small amount of time to say in their language, but that's because their language is a shorthand for the common prejudices.

And so then since it's a realtime conversation there's no possible way to come up with all the words necessary to refute these very simple but very wrong statements. So you end up having to throw a few words at it and hope they work, and by the time you've thrown a few words ("low functioning doesn't mean what you think it means", "actually a lot of them think otherwise", "actually ALL of them think otherwise" (since we're dealing in shorthand and fast comments) at them, they're on to the next short thing to say but long thing to refute.

And then in trying to refute it it both takes you longer, you have to come up with more words, and you have more of a chance of someone telling you you're too detailed in your responses if you do try to take it all at once.

I remember someone talking to me about a time they'd seen the standard prejudices about "rednecks" posted somewhere. They saw someone respond, "I lived with those people. I grew up as one of those people. It's not that simple."

That's how I wish I could respond a lot of the time: "It's not that simple. The conception of functioning level is screwed up, the conception of communication is screwed up, the conception of what is and is not a contribution to society is screwed up, the conception of class is screwed up, the conception of the school system is screwed up, and so much more, and I don't even have time or language-generation ability to explain it all, but my viewpoint isn't frivolously taken, really."

But I'm rarely that glib in public. I usually only say a part of the answer, slightly inaccurately even, and get bombarded with even more things that I know are wrong but can't say quickly.

2:44 PM  
Anonymous Kassiane said...

I was an education major, and "out" about being autistic-I really don't pass well-and in my ed. psych. class, this *expletive deleted* pulled some of the same crap.

I just used words until he said that "freaks shouldn't be in class slowing up his kid". Then it was more like "I AM one of those freaks and I have a 4.0" and...thrown punch. I don't have your restraint.

It's scary that there are still so many eugenicists out there.

4:16 PM  
Blogger Kev said...

Welcome :o)

I can hear the determination in your tone. It's good to know that this international coalition of parents is growing.

4:23 PM  
Anonymous Camille said...

I kept waiting to read the description of how you splashed the crantini in her face and how it ruined her beautiful pastel silk beaded dress.

Such restraint. You did the right thing, of course, by avoiding the splashing of the crantini in the face. Still...

I'm not sure if ballastexistenz covered my point already... but when I start in on a topic so huge as eugenics I am so emotional about it that I tend to talk quick and my thoughts skip tracks so that I get derailed from my original point. Then, even without that, since the answer to a question like, "what do you mean there isn't an epidemic?" is a 2 hour lecture with graphs and a serious hisotry lesson...people lose interest after 2 sentences and never get the point.

All you can do is the best you can do in refuting this stuff.

I was interviewed by a NYT reporter a couple years ago. I missed making it into the front page story, one of my sentences ended up in a different article a few weeks later, not on the front page. (sigh) When we were on the phone (long conversation) the reporter brought up abortion of autistics (with genetic testing). She said, "surely parents have a right to abort..." I said, "Look, we know that if there are identical twins and one has "classic" autism the other one could be just like me."

What I meant was, 'Sure you open up the DNA book and it says, "hmmm, bad news, looks like autism" but you can't know if you are about to abort ME! '

I was trying to tell her, look, this is personal, lady. You are devaluing MY life.

Which doesn't make a good defense for the question of what if they can prove the person is like my child "middle functioning" if there were such a thing... less able to advocate for xyrself than ballastexistenz is, in prose, anyway. My ASD child would be considered a horrible genetic error by most people. Actually, there is a test for one of xyr major problems, lots of kids like xyr are being aborted every year.

so now I'm wandering off course.

Estee, you are a treasure. Your son is fortunate to have such good parents. Keep up the good work.

Consider the "splashing the martini in the face" thing, for certain crimes, will you? Or just tell us that you thought about it. :-)

5:10 PM  
Blogger Kristina Chew said...

People rarely say the sort of things your relative did to me----perhaps after all these years of hearing my say without skipping a heartbeat of a breath "Charlie has autism," they are beginning to understand the lingo. But the wake-up call does not come for everyone.

6:27 PM  
Blogger Bronwyn G said...

Your post was awesome Estee.

Especially the end bit about having read the Curious Incident and enjoying your blog and learning lots.

I think you'll get many such people.

And I couldn't think of a world without Adam. It would be horrible. And that is the same for everyone, of course.

I could think of a world without prejudiced people but that's eugenics too.

8:03 PM  
Blogger Jannalou said...

I was also impressed, when I first read your post. I am much better at remaining calm when refuting or arguing online. In person, I just get mad, frustrated, lose my patience... and lose my words.

8:43 PM  
Anonymous Anonymous said...

Did anyone bother asking you why autism is not stereotypical?

Scorpio

9:08 PM  
Blogger so much for mercury said...

What a great post. I am feeling very naiive right now. I had my first experience with a previously close friend now showing "fear" when their little girl plays too long with my son. Maybe they read the Hornig mouse study - they did admit to me that they witheld their daughter's vaccinations out of fear that they would cause her to become autistic. I guess I had assumed talking openly would infect others with my own sense of acceptance. I am thinking now that I might be wrong. I am also thinking that I should quit blogging anonymously, which I had done out of fear of offending friends, relatives, and teachers. Based on your results, maybe I should "come out". There's absolutely no one speaking for acceptance in the place that I live.

10:57 PM  
Blogger Phil Schwarz said...

Beautiful, Estee, bravo! (Technically that should be "brava, brava, brava"!)

I am *so* glad to see you "come out" as a non-autistic ally -- and yes, the term is a propos. The folks at PFLAG, the American organization for parents and friends of lesbian and gay people, talk about family and friends *coming out* as straight allies -- because often it *is* a difficult and challenging thing to do.

As I read your post, my mind kept coming back to one of the most famous quotes of Hillel the Elder, a Jewish sage who was born about a generation before Jesus. (Hillel and the school of his followers had a tremendous impact on the development of Rabbinic Judaism -- Judaism as we have known it for the past 20 centuries -- but even more than that: much of the ethical teaching of Jesus derives from that of Hillel.)

Hillel said:
"If I am not for myself, who will be for me? And if I am only for my self, what am I? And if not now, when?"

And it sounds like you have answered with a resounding "Now!". Welcome aboard.

At Autreat 2006 (see http://www.ani.ac and http://www.ani.ac/autreat.html ), I will be convening a workshop on the practical aspects of how we can *support* non-autistic allies, both in terms of providing them with talking points and strategy for dealing with the "barrage of questions" you and Ballastexistenz describe, and in terms of *emotional* support. I have invited panelists from PFLAG and some of the other organizations that support straight allies of gay people -- the most successful model for ally development we have out there to learn from -- to talk about the practical nuts-and-bolts aspects of supporting straight allies and doing effective outreach to families newly faced with a family member who has come out gay.

The parallels are so striking -- outreach to families new to a diagnosis is *such* an important thing to be doing. All they hear is the "curebie" perspective, the stuff you describe being confronted with at the cocktail party and elsewhere. Outreach to them from other *parents*, particularly non-autistic parents, could be so helpful, and could grow the nascent network of allies over time.

I am *so* glad you are "out". (Formidable, n'est-ce pas?...)

-- Phil, who grew up in a northern suburb of Windsor, Ontario called Detroit ;-)

12:59 AM  
Blogger abfh said...

We need literature that can be given to curious people at cocktail parties and other places where we might not want (or might not have the time) to get into a long political discussion.

I'm not talking about a basic description of the common traits of autism -- cards of that sort are printed by autism societies -- but something like a Neurodiversity FAQ pamphlet.

Hurrah for the woman who complimented you on the blog! I'm glad the whole evening wasn't a downer.

8:25 AM  
Anonymous Anonymous said...

I have read so many blogs lately that advocate acceptance -- Accept your autistic child for who he is. Stop trying to cure him! I find that kind of attitude baffling. I find it hard to believe that any parent wouldn't give their child a pill to cure their autism. If my child was born with a physical deformity that could be cured with therapy, I'd find him the best therapist I could. A neurological condition is no different. I love my child, no one would dispute that. But I will do everything in my power to help him learn and grow (via both parental teaching and ABA/RDI/speech/vitamin/auditory/etc therapy). I WANT him to be considered indistinguishable and normal. What's so wrong with that? What's so wrong with wanting to "cure" my child of this devastating neurological condition?

To me, it's selfish of parents to take the approach of-We accept our child for who he is and we're not going to try and change him. Selfish because when these children are grown, who's to say you'll even be around? Why not give that child the foundation to live an independent life? We can't protect our children forever - the cycle of life just won't allow it.

"Autistic people say they don't want to be cured" - think about that for a minute. You're not exactly giving your child the chance to make that decision, are you? Your child is way too young to understand that he's going to be different from his peers or that he's going to have to struggle to be accepted socially. And by the time he does realize that he's different, it will be too late. Early intervention is KEY. Human beings adapt. And if you're brought up a certain way you believe that's the norm. So of course autistic adults don't want to be cured. Of course they don't want their personalities changed. But they can't deny that they struggle. They can't deny that growing up wasn't easy.

So I'm sorry but I don't accept my son's autism. Autism has deprived him of language skills, social skills, and has plagued him with sensory issues. I know who my child was. He was a happy, joyful little boy who loved to play with us and laugh with us. That little boy is gone. I want him back. I will do everything in my power to get him back.

12:02 PM  
Blogger ballastexistenz said...

Anonymous:

We don't deny that we struggle, and that growing up wasn't easy.

Some of us also don't deny that growing up wasn't easy particularly because of the many attempts to cure us imposed on us, the attitude that we must be cured. Do you think we were all raised by people who understood enough about autism to not try to cure us?

Do you have any idea what it is like to spend your life being described in terms of wanting someone back? As if who you are now, is never going to be acceptable, until you become the myth in your parents' head of who you would have been if you weren't who you really are?

Regarding what you call "deformities", here is something I wrote with a quote from someone about those, about halfway down, Mary Duffy.

I will shortly be probably writing something about "I know who my child was and I want him back." I thought I'd written about it before, but can't find it in my blog.

1:20 PM  
Blogger Estee Klar-Wolfond said...

Anonymous,

Acceptance means support.It means finding ways and means and schools who can teach differently abled children who are capable of so much, but live in a society that believes they can't amount to anything.

Acceptance means that I love my son for everything he is and I fight for schools to address his learning needs so that he can be fulfilled in life. To suggest that this isn't possible with autism, that it is a tragedy is an unfortunate state of mind. It means fighting for something you will never have. It means your child may sense your non-acceptance of his personhood. I believe that is more wrong and utterly cruel. I know my child would sense my disapproval of him. Autism is not cancer. It is not a terminal illness that will kill my son. Non-accpetance, however, can kill his spirit. I will not let that happen and it is vitally important, that the one day I do die, there are at least some people who view him as a person, not half of one.

Michael Moon noted (he is autistic) that he was confused about his autism because he didn't know of it (his mother tried to hide it from him). When he learned of it, he began to understand himself and began to garner his self-esteem. Today, he is a musician, an astrologer, presenter and photographer and a prolific one at that.

By raising awareness about autism for acceptance, we are also speaking for the millions of other people who have some kind of disability, who deserve a chance and the opportunity to be and express themselves, and not be considered life's genetic tragedy.

MukiBaum Centre for Complex Disabilities is an example. Kids who are otherwise abused or abandoned because they are differently-abled, are accepted for who they are -- their aggression goes away and they begin to talk. I believe this evidence says a lot about how we treat our children and what is possible.

1:51 PM  
Anonymous Anonymous said...

I'm sorry -- I'm relatively new to the world of autism. It wasn't long ago that my son was diagnosed and I still feel extremely sad and frustrated. My first instinct has been to eradicate this disorder via whatever means that it takes. After reading these "acceptance" blogs and also trying to "cure" my son with therapy, I feel like I am being judged as a bad parent, a parent who doesn't love my son enough to accept him for who he is NOW. Is it wrong, in your opinion, to get him as many services as possible (ABA, speech, OT) to help him overcome some of the delays he is now experiencing (speech, social)?

2:20 PM  
Anonymous Anonymous said...

Estee said, "Non-accpetance, however, can kill his spirit".

Anonymous, focus on or pursuit of "false hope of change" (built on cultural or scientific misunderstanding) can harm your spirit too. How do you want to live?

If somewhere inside you are thinking "not like this", the good news is that you have the controls over what "this" is. You may not see them, you may not want to see them, it may even be difficult to see them, but they are there. Regardless of how you define and live whatever you see "this" as, it will impact your entire family.

2:39 PM  
Blogger Do'C said...

Anonymous,

The fact that you are here reading and commenting says a lot. Don't give up. There are a lot of very smart people here.

"I feel like I am being judged as a bad parent, a parent who doesn't love my son enough to accept him for who he is NOW."

I think very few people here acutally JUDGE anyone. They may ask to questions or point out things possibly worthy of examination (internally or externally), but I don't think the ultimate goal is a decision about you as a person or parent.

2:58 PM  
Blogger Wendy said...

A "friend" accused you of self pity?? Some friend. And how insensitive. I wish people could walk a mile in our shoes just to see how it feels. I'm not saying I wish autism on anyone but a lot of people just don't "get it" nor do they even try to understand what we're going through.

My sister-in-law asked me the other night what I'm "going to do with C once he's supposed to be entering Kindergarten". Once he's "supposed" to be entering Kindergarten? I actually had to explain to her the reason for C's hours of weekly therapy - to hopefully one day integrate him into a regular classroom, hopefully without the need of an aide. And this coming from a FAMILY member who should have been a little more clued in. So frustrating!

5:02 PM  
Blogger Estee Klar-Wolfond said...

Anonymous,

Wow, I just read your comments after posting Open Arms today.

Please don't give up. I understand exactly how you feel. Read that post and understand that acceptance just means teaching a different way. You are still helping your son, but to teach him, to help him with all of his potential, he does need acceptance first.

Thank you for your honesty. You are not being judged. As a parent, what angers me is not having the supports we need. If we had those, then the others (orgs who want to cure etc,) would not have as strong a voice. But after speaking with a few scholars today, I believe the course is changing.

7:14 PM  
Blogger just another mom said...

I know how anonymous feels. It's frustrating to get so many different takes on autism. I was in her shoes not so long ago, as were many of us. Instinctively, most of us want to do what is best for our kids, and being accepted by others, not just accepted by parents, seems to be important--at first.
We go to online forums that tell us one thing, namely, if we don't intervene with chelation, vitamins, bizarre and potentially dangerous alternative "protocols", the list goes on and on and on, that we are abusing our precious babies. A lot of emphasis is put on what is to blame for our children's autism, and how to fix it.
Then, we start to get suspicious of the motivations behind these desperate measures--at least I did. Maybe, just maybe, these parents aren't so worried about their CHILD being accepted, but the parents are worried about how others (strangers maybe) will perceive the obvious failings of the parent. Please don't think that this is how I feel, just throwing out random possible reasons for the hysterical treatments going on.
I would read about all these treatments and wonder, "What the heck are these people thinking?! Would they take all these pills and apply all these patches and inject all these vitamins into themselves?" Probably not. I became even more suspicious when I saw parents diagnosing children from a description supplied by the frantic parent, and "prescriptions for a cure" are then offered up for consideration by any and all. What a mess.
One of my fears was that one of these kids was going to wind up seriously injured, sick, or dead due to a completely unqualified person telling a parent to dose their kid with God only knows what, and ignore the horrible side effects--just part of the "detoxification" you know. Frightening, and I stayed away, since I am one of the "abusers."
Relax, anonymous. Things become clearer the farther you get into this wild ride. You WILL learn to appreciate and cherish the things that make your child uniquely yours. I am constantly amazed at the connections and observations my son makes that would have passed me by if it weren't for him showing me.
One other thing--please feel free to congratulate me on becoming an aunt (for the ninth time) this morning. I have a beautiful new nephew to spoil. Another gift. :)

9:53 PM  
Blogger ballastexistenz said...

Yeah the pressure on new parents seems frightening.

I think "Autism Speaks" was started by the relatives of an autistic child who was only three years old. Most parents whose children are that age don't even have their bearings yet in the autism world, and starting a foundation like that will only serve to harden them into the cure position without seeing the rest of it. Which is... a problem, for them, their child, and for people who will see the foundation and think "These are people who know a lot about autism," when I look at it and say "These are people who were new to the autism world but had a lot of money to throw around while still confused by the initial diagnosis..."

10:39 PM  
Blogger Kev said...

Congratulations Just Another Mum (and Aunty) :o)

Anonymous - I too can empathise with you. After our child was diagnosed we felt that we had to find a reason - a cause - and then it was our duty as parents to eradicate that cause.

We blamed vaccines and we began the process of reversing the damage. Thankfully we only used things like GF/CF and Homeopathy.

THen we started to see things a bit clearer. These 'treatments' were doing nothing. We were urged to try more and more contraversial things but when we researched them, the folly of using them and the assumptions necessary to justify their use made the belief system unsupportable.

We read Amanda Baggs, Donna Williams, JIm Sinclair, Larry Arnold, jypsy, Camille Clark, Neurodiversity.com and as our child pogressed and thrived we realised that progress was inevitable and that the biggest thing we could do for our child was work with her. Since that day, she's happier, we're happier, she learns quickly and progresses well. This is due to the fact that instead of fighting what we thought she had we work with who she is.

We still use speech therapy. This isn't because we are desperate for our child to speak but more that we want her to find a way to communicate. If she uses speech then so be it. If it turns out she's happier using a PECS board or Makaton or FC or whatever - thats fine too.

Nobody wants to judge you Anonymous - all of the parents here were new once. However, I'd like to point you to Jm Sinclair's great essay on the subject.

Thanks for questioning us - I hope we can offer you some insights and positivity.

10:58 PM  
Blogger Zilari said...

Estee -- I'll respond here to your original post (that is, this isn't a response to any of the comments, but my first reply to your post). The comments you received at the party you describe sound so horribly insensitive and ignorant that I really have to question the idea that being nonautistic somehow grants a person superior social skills and empathy.

It really is difficult to deal with people who ask quick, loaded questions and expect simple answers where there are no simple answers (or at least no answers that will make any real sense without the proper context).

Sharing the language and concept of acceptance will hopefully let this proper context start permeating society -- I think that this entry you wrote is certainly a good start toward that, and I thank you for writing it. I can see your "voice" evolving here...it really is amazing what a person can encounter once they start taking a strong stand.

11:15 PM  
Blogger Estee Klar-Wolfond said...

Congratulations Just Another Mum (and Auntie)!!!

So many joys!!

7:14 AM  
Anonymous kyra said...

i applaud you, estee, for speaking up, for keeping the discussion going, for answering honestly and respectfully those questions posed by people who are speaking out of fear because that's what it is, that where those insenitive exclusionary comments come from, fear. ignorance too but the FEAR is what keeps those from confronting and dismantling the ignorance.

i know some adult autistics too (who prefer to be called adults with autism and not simply, 'autistics') and it turns out that they would love to have had support and attention in the way that would have allowed for greater ability in 'information processing' in this world.

i think our society sorely needs an overhaul in how we view differences and our education system needs a TOTALLY new paradigm shift but i also think that parents of kids on the spectrum are doing no wrong by providing the most nourishing, nurturing, appropriately challenging environment to allow for their child's greatest growth.

i've said it before and i'll say it again, it is entirely possible to love and accept and still try to change. the issue is more about where the desire to change (help a child grow) comes from: fear and the need to fix to relieve the fear? or love and the need to provide for a future which is truly unknown and wide open.

8:43 AM  
Blogger Estee Klar-Wolfond said...

Kyra,

Wonderfully said. Bravo!

12:24 PM  
Blogger just another mom said...

Kyra,
My thoughts precisely. Could you drop a line to my husband on how to read my mind? ;) He needs a little help in that area.
The traits I'd like to see change in my son are the ones I'd change in any typical kid, i.e. fewer tantrums, less frustration due to incomplete comunication, toilet training (!), the standard fare.
We are still fairly new to this game, and still learning what works and what doesn't work, but we haven't made any tragic mistakes yet.
I also agree that the education system needs more attention to acceptance and inclusion, but there are unfortunately no easy fixes. I will continue to be my son's best advocate and ally regarding educational opportunities.

Estee,
I applaud your restraint in dealing with that woman at the party. I probably would have slapped her, but I have zero tolerance for alochol and BS in close proximity. Especially when the BS is coming from someone who has such an apparent lack of understanding of the situation. Of course, if I'd slapped her, she would have had one more reason to dislike me....
Keep up the good blog. This and others like it continue to open my eyes.
Thanks.

12:52 PM  
Blogger ballastexistenz said...

It's not where the desire to change a child comes from, that makes it good or bad. Not on its own. It's, even more, what you desire to change.

Non-autistic people seem to have better instincts for what to change, and what not to change, in non-autistic children. Not perfect instincts, as is obvious from looking at any parent/child combination you can think of, but certainly good ones.

When confronted with an autistic child, many non-autistic parents, or even autistic parents whose belief system has been formed by a predominantly non-autistic world, have no idea what to do. They have all the good intentions they would have with their non-autistic kids, but they have fewer instincts for how their autistic kids operate. They may not know what growth looks like in an autistic kid. They may know so little about what growth looks like in an autistic kid that they mistake it for something they call regression, and panic.

When autistic people talk about not wanting to be changed, we're not talking about wanting to remain static and unchanging throughout time. I actually have to strain a fair bit not to consider it deliberate that so many people misinterpret us that way. It's easier to say "Well of course you want to change people, all people change," than to look at what we're actually saying.

When we say we don't want to change, we're incorporating all four dimensions in life already. We're incorporating growth through time into our concept of the thing we don't want changed. We're saying "We don't want to be changed" in the same way that a cat, faced with becoming a dog, would say "I don't want to be changed." The cat isn't denying the important passage from kittenhood to adulthood. The cat is saying I want to grow as a cat, not a dog.

When people say "But all people change," they're acting like we're only talking three dimensions, leaving time out, an impossibility. And quite frequently when they say that they sneak in something about making us into dogs, only they call that part of the growth from kittenhood into adulthood. "Sure, learn about stalking mice and stuff, I'll give you that, as compromise or something, but hey, wag your tail when you're happy, not when you're mad. That's the right way after all. You can't deny change. Didn't I just talk about important skills of the adult dog... er... I mean cat?"

No, I'm not saying autistic people are a different species. But we do have a pattern of growth and learning that has enough distinctive elements that it needs consideration in its own right, the same as being a different species would. It goes deeper than either personality or culture, that's for certain.

It's only recently, though, that I've been able to figure out that it's not entirely deliberate that so many non-autistic people can't imagine us saying "We don't want to change" without meaning "We want to stagnate." The entire model for growth is not based on our kind of growth. My own brother used to tell me he was sent for a developmental evaluation because he went through the developmental stages "in the wrong order". If they were such truly universal developmental stages, we'd all go through them in the same order. If developmental stages were based on some of my developmental stages, instead of the ones they're based on now, most of the world would be regarded as severely perceptually regressive. Not that that would be any better, but I do retain skills that are important to my way of functioning but lost by most people in infancy if they ever had them.

Nonetheless, what we need is to be helped to grow in a very autistic way. We need the skills it takes to be autistic in this world, not the skills it takes to be non-autistic. Some of those skills will overlap with the skills non-autistic people need. Some will look the same but be accomplished by very different means. Some of the skills we need, and have, are ones that non-autistic people don't have, or don't have very much of, and some of those are essential to our ability to function. Unfortunately, given that we didn't build the language, a lot of that last kind don't have words as far as I know. But I'm sure many autistic people know exactly what I mean.

And since non-autistic people generally don't know about this stuff, and for a whole lot of other reasons, we need exposure to a wide variety of autistic adults, I think. Not as stand-in staff/aides/special ed teachers/etc (the training for which can impede the kind of learning that's necessary), but as people we know. A wide variety because all autistic people aren't the same. I learned more about myself and how to deal with the world in a few months from an autistic mentor (in the true, not the over-used commercialized weird not-real icky thing, sense of the word, and I'd look at any program creating artificial "mentors" with a large degree of disturbedness), than I learned spending most of my childhood and adolescence being taken to various counselors and programs and institutions and so forth. But she and I clicked and that can't be forced or mandated and autistic people who are not compatible in certain ways with each other being forced into that role can be horrid (I've been in too many situations where someone was being forced on me or someone incompatible who didn't know it was trying to force themselves on me in that way). The opportunity for things like that to develop naturally is important.

And our parents also need exposure to a lot of autistic people, in a very non-pathologized way (not just "here's the story of my life according to the DSM-IV" kind of things), because then our ways of growing won't seem as disturbing or mysterious to many of them, and maybe they'll be able to learn to distinguish cat-growth from dog-growth somewhere in the process. ;-)

2:40 AM  
Blogger ballastexistenz said...

I forgot to add, also, that it's not just that we personally need to be raised autistic. Non-autistic people need autistic people to be autistic, and not non-autistic. The same way autistic people need non-autistic people to be non-autistic, and not autistic. This is necessary all the way from superficial levels to deep ones.

2:44 AM  
Blogger ballastexistenz said...

I didn't know how to say this earlier.

Whenever a parent, or an autistic person, starts running up against this stuff, I feel bad. I don't feel bad that they notice it, I guess, because it needs to be noticed. But I feel bad that it's there to be noticed, and that a new person is having to change in all the ways necessary after you notice it. I don't entirely know why, and can't explain it too well.

5:44 PM  

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