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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, March 28, 2007

 

Finding the Joy in Autism




This is my mother with Dani -- an autistic young man (21) whose name is celebrated by his mother, Kathy Laszlo in an organization called D.A.N.I. (Developing and Nurturing Independence) to get people with disabilities working in our community. I was honoured to be given an award at this gala. I spoke with many parents who have worked with their children through the years, who find the need to continue to celebrate despite the challenges.

I have hesitated renaming my blog. It was intended to make others think about finding challenges and celebrating lives despite them. There are people who do not understand autism, who speak about it in unfair terms, who abuse our most vulnerable, and so forth. Many of you have understood the idea – the rebalancing of views as it were and protecting human spirit. Many of you have not and have taken offense to the title. I am sorry you feel that way and hopefully you can come to see why celebration is important in autism as it is with any disability and even in illness itself -- because we believe in life. I am not sitting in one “camp” or the other. I think there is merit to both "sides" and we have to begin to define what unites us. This is a moderate approach – not falling into the hype of hysteria and not languishing in self-delusion. I am really empathetic to the struggles that each family faces. A lot of what I do is self-reflection and listening to other voices. How can you not? As we learn and share, we evolve overall. Being married to an ideology is dangerous in and of itself.

Amidst all of the doom and gloom messages about autism and disability, as a parent, I became so frustrated that others could never look beyond the challenges that confront Adam daily and instead focus also on his strengths so he could receive an education that is beyond remediation and correction – the latter which increases Adam’s anxiety. While we still must deal with the challenges of autism in our own family, we must find the strength to run Adam’s team, deal with sleepless nights, and lately, anxiety. Would I want to alleviate Adam’s anxiety? You’re damn right I would. I don’t care if Adam flaps his hands in happiness, or looks different, but when a child is distressed, it takes even more work to not only find out why and deal with the source of anxiety. I’m certain that all parents experience this day in and day out sleuthing and trying new things. One can try a medication, but it may not work, it may not deal with the source, or it may cause serious side-effects. Or in the best case, it may work. Dealing with this is a process of elimination of all the things that could possibly be causing the stress – or the confluence of events and environment and physiology that makes one answer nearly impossible to find. In the meantime, as it is happening to me, I become more distressed and sad and I keep remembering for all the struggles that we’ve gone through together, we somehow find that joy again. It’s what we live for. It’s what we must live for and protect unless we become Nihilists. In autism, we need that. We don't ignore the struggle, but we protect the joys.

Would I like to live my life so that family members and friends really understand the complexity of our lives – trying to “live” it like others while not really living a “normal” life at all. Trying to fit into any category of normal isn’t a reality, and I find, very stressful. Is it comforting when a family member questions why I don’t answer the cure-all question with absolute certainty? No, because it doesn’t understand the complexity of autism and our reality. If autism could be cured, in our reality, people with autism might not be treated with the respect they deserve. Then again, if it is like Downs Syndrome – a way of being without a cure - how will all of negative referencing come to affect autistic individuals in the future? While many are busy finding a cure, others are complacent in waiting for it and we are not getting into schools, not getting enough supports, not getting enough accommodations. We simply are not accepting what is real right now: that there is human difference in our world. In the end, one can sometimes feel very isolated in the sea of misunderstandings, complexities and grey area. Grey area is what makes most of us up, and definitely makes up the landscape of autism, which is to say humanity itself.

I still believe that attitude is important and asking for support in schools and society will succeed with constructive dialogue, and in trying to understand autism better. I still do not agree with the hysteria we see in the media. I agree with a more strategic and respectful approach to achieving services for our kids while also supporting science that strives to be unbiased in this regard. After all, we are dealing with important people here – our children. They deserve to be treated as people, not half people and not in snappy little sound bites that manipulate heart strings. The last thing we need, or can endure, is disregard and misunderstandings among the other members of our communities.

I also wish to say that we need a multitude of supports and services for our kids that truly respects all that they can give to society. Adam can give. He can receive. He can learn. I want to find out what is happening to him that is causing his distress as any other parent would. It sometimes makes me feel helpless and want to cry. Many of you are right, you do not always FEEL the joy in autism, but we must wait for it, strive for it, and find out how our children can be the best autistic people they can be. For me, it comes down to happiness. When Adam smiles, all is right with the world again.

Finding the joy in autism – what it means to me – is a commitment to Adam. He needs me to be positive and strong. When I am down I know how easy it is to wallow about something that is not part of our reality. But I notice it doesn’t help Adam at all. What would help him is a coming together of all autism families to achieve our mutual goals together. We need to celebrate our diversity as parents, the diversity of our autistic children, and a diversity of approaches to helping our children under an umbrella of ethical debates with regards to those approaches, because we are capable of constructive debates. Aren’t we? Despite other’s attempts to factionalize me, this blog seeks to debate how autism is represented because it concerns my autistic son. If titling this blog The Joy of Autism, or the event last October, The Joy of Autism: Redefining Ability and Quality of Life was the only way to get people talking in Toronto or online, then it was a good thing. We are waiting much too long for the services, accomodations and for the respect our children so rightly deserve. We should represent Adam and others with dignity because they are vulnerable and sensitive. I can’t imagine that other parents, no matter how they’ve interpreted the “joy of autism,” would not want the same for their children. It is my dream – and as the little boy says in the Goodnight Moon video: “Dreams are very important.” May we all work together, question everything in a constructive way, and be able to share our joys and struggles.

3 Comments:

Blogger mcewen said...

This makes an interesting contrast to Mr. Kirby's post in HP. It is a great shame that we can't all share the same common ground and keep the big picture in mind.
Thank you and best wishes

3:06 PM  
Blogger abfh said...

You mentioned that your mother has been ill; perhaps Adam overheard something about this, and that's where his anxiety is coming from? Just a thought...

Best wishes to you and yours.

5:10 PM  
Anonymous EHL said...

A few years ago there was buzz about secretin, a drug used in some kind of GI testing that seemed, as an unlooked for side effect, to improve children with autism. When researchers at the University of Chicago did double-blind placebo studies, they found the children in both groups improved.

Cathy Lord, one of the researchers, speculated that the hope and excitement of the parents in the study might have made this happen. Perhaps this is unscientific speculation, but it made sense to me.

In my own life, I know my child picked up on my dispair at times and he does better when I'm happy.

9:58 AM  

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