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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

Saturday, December 23, 2006

 

What do you say?

More often, I receive a call from a parent with a newly diagnosed autistic child. I remember my first weekend, when I first heard the word "autism" outside of Hollywood context. All I could picture was the doom, the life now "limited" to "dealing" with disability. The weight of the perceived "restricted" life felt so heavy I could barely breathe. I know that every parent reading this remembers the day when the word autism was actually uttered like remembering where you were and what you were doing at the time of 9/11; the moment when time stands still and we catch a glimpse of mortality.

Now three years later, I am far enough removed from that place that I can look back objectively and consider the journey we've taken, but not so far that the pain is far from memory, or the tears of worry still don't occasionally trickle out of an eye. In the world of dis-ability, the shape of pain changes.

So what do I say? I first ask what they understand about autism. I ask what they've heard, and what they have done thus far. I then begin to tell them that autism is different for many people, and like any family, decisions about care, education and therapies will be individual. I like to refer them to other autistic writers and advocates, because they are the real experts in autism and teach me so much. I talk about our personal experiences (some of which you can read in this blog). I urge parents to explore what works best for their child, and of course, to trust themselves and trust the people they are working with. (I have, finally, a good relationsip with a woman who is fomerly trained in ABA and a Ph.D in psychology with whom I can discuss issues constructively and to help me organize Adam's teaching at home. I like a healthy, benevolent argument that keeps everyone learning for Adam's best interest. In fact, it took nearly three years to achieve the kinds of relationships with therapists I've developed today, through experience and gathered confidence).

So why the tear I mentioned earlier? Do I wish Adam was not autistic? Do I wish for what I don't have, what he is not? Or do I focus on what is and what I can do and rather than what isn't our reality. Even more than that, what I feel I can't seem to express well enough here tonight, is that there are gifts in the very things that we orginally think are not gifts at all. There is beauty. There is joy.

In finding all of that good and sweetness in the child that I do have, I care strongly about the way people view him without knowing him, without taking the time to look and SEE beyond the "category," and the way people put the onus on this little child to FIT IN, instead of thinking about what he needs and how he needs to be accomodated in order to be a successful little boy. Most importantly, I want him to feel good about his life and, ironically, that he be provided the accomodations so that he can FIT IN if he so chooses, and in his own "size." At four and a half, I have been able to provide the supports that seem to be given to the little children more readily than when they become older. Soon, as he enters an integrated primary school, the blows will come. No parent can protect a child from everything. That fine balance between advocacy, protection, and accepting our children's right to be individuals and figure it all out...well let's just say I don't expect to be the perfect parent.

So what can I say to a parent of a newly diagnosed child with autism? It's an uncomfortable place to be, actually, because I do not like to appear as all-knowing as many "experts" like to appear. I still await more years, more experience, more scars and of course, many more successes. All I can offer is the information that we, as a society, do know, state the issues, list the therapies. All I can state is my own messy journey in autism, as messy as any family's and as trial-and-error based as parenting can get. And then I want to say...carry on! Life with autism can indeed carry on, even joyfully. Indeed, it could carry on much more easily if we lived in a more tolerant and accepting world.

On that note, it is heartwrenching to watch a society march heartlessly on with messages that do nothing but spend precious human lives to justify their own incompetencies, their research, or their need for pity. As happy as I am with my son who is autistic, we live in a world that is not very easy for autistic people -- for those whose disability appears so visibly on the outside to the person whose disabiltiy is "invisible" so that a family or society does not think enough about accomodation.

Also, while it is perfectly okay to work through feelings of confusion, grief and worry as parents, it is simply not okay for people to go out in public and talk about autistic people as if they are nothing, have nothing inside, know nothing, or have nothing to contribute and that if they do, they are anomalies, or "not autistic," in order to receive pity or support. I consider all the worry and tears I shed in my first days, when I realized that Adam was autistic but didn't really understand what that meant. All of those messages are incredibly pervasive -- they infiltrate the media, they propogate research projects that get publicized by the media and get funded by some charities, they get purported by some families in order to receive funding for their preferred type of therapy, they go to Hollywood and then presto -- they enter mainstream consciousness, or ignorance, about autism.

The popular image of autism is dark and "mysterious." The image of autism is dehamanizing to the point that those very parents who want to get that funding, who want desperately to BE RIGHT, will say that a person is not autistic if they can speak or read or write. No -- those people MUST be savants!! If they are not dysfunctional enough, they are even less human than autistics because they do fit into the "devastation criteria." If they are not savants, (and those who read and write are not savants, btw), they fall into an abyss. They are the supreme nothing, unworthy of this pitiful pity, and then publically besmirched. We are witnessing the most horrific arguments about humanity ever -- these dangerous attempts to categorize humanity and worth, all while these same groups will use the statistics which lump these very "categories" of human in order to bolster their epidemic numbers.

The real autism is diverse. It feels, it speaks, it has a voice and an opinion...it is like all of us -- so utterly human -- the same, while different, indeed what being human is all about.

Christchurch made another poignant video, about the effects of what the devastating messages about autism create.



THE CONSEQUENCES OF DEVASTATION RHETORIC


You can read a news report about the Gravelle case here.

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5 Comments:

Anonymous Anonymous said...

Sorry - couldn't watch all the video. The couple's excuses for their behaviour is just a handy 'get out' clause, although I suspect that any other excuse would have been clutched at if the children were not in an identifiable group. Words are inadequate. Best wishes

12:18 AM  
Blogger Kassiane said...

There's one more thing you can say:

"congratulations, and welcome to a beautiful new world you never new existed".

They may be baffled at first, but they'll look for reasons to understand why you said that, look in their child, and they'll find them.

1:44 AM  
Blogger Estee Klar-Wolfond said...

Kassiane,

Funny you say that. I actually did write a post once on a world where that is said. When someone just called me this week to ask about the "new" diagnosis, I did mention that post, trying to express that it's all about how we, and the world, looks at it. Yet, I am cognizant of being sensitve, of knowing what the world is like as a parent introduced to the world of autism: it's an unfriendly world for sure. Perhaps because of my character, perhaps because of Adam, or both, I managed to get out of that place of despair very quickly. I attribute it to anger. Not at autism, but at the "experts" who crassly diagnosed Adam -- remembering how they coldly dealt with him as if he were, all of a sudden, a "non-person." I will never forget those assessments, the way people looked at him with chagrin and at me and my faith as if I were delusional, -- my beautiful, happy, and smart little cherub - they just could not see what I saw, what love CAN see.

8:21 AM  
Anonymous Anonymous said...

There are three things I try to tell parents I meet who are struggling with a new diagnosis of autism:

1. Your child is the same child he was the day before you had a diagnosis. Labels are helpful only in as much they facilitate getting the services you need; they haven't changed your child.

2. Your child's future may be full of more therapists and doctors than you probably would have ever foreseen, but always remember that no therapist, teacher or doctor will ever know your child the way you do. Trust your instincts when something seems wrong.

3. Love your child. Love them the way you always have. Love them a little more each day. Let go of the pre-concieved expectations you had for your child and embrace the beautiful person he was made to be.

10:22 PM  
Anonymous Anonymous said...

I have a 3 year-old child that was diagnosed with autism 10 months ago, and I am so reassured when I read what you have written. It is so wonderful to read comments posted by other parents who also see their children as being wonderfully special instead of a complete burden! Knowing now that my daughter has autism has made every moment something to celebrate! She learns so much and I have noticed that it seems to be even more amazing than it was with my older daughter. You can almost see the intensity in her thought process and even though she is nonverbal, you can see such an awesome intelligence just bursting to get out. Thank you for offering encouragement to those parents new to this adventure! I think we need that so much more than sympathy!!

8:48 PM  

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