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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

Friday, June 29, 2007

 

Are We Listening?


The audience waved their hands in the air – the deaf sign for waving. There were others who rocked back and forth, some other adults who gracefully flapped their hands. Drake sat in the front and squealed in acknowledgment when the speaker said, “just because you don’t cry, doesn’t mean you are not sad,” in acknowledgment to how many autistics take time to process their emotions. The squeal was a “yes yes!” to the speaker’s comments, and in any other setting, this highly intelligent, non verbal autistic eleven-year-old may have been asked to leave, or others might have stared, thinking that he didn’t think of anything at all. Yet Drake kept doing this. He sat longer than any other eleven-year-old I’ve ever met and made his noises in acknowledgment of the important points.

“I am fortified by being here,” he wrote on his Lightwriter.

I sat in the room and wished Adam was with me, his soft five-year-old hair brushing my jaw, snuggling up to me as he always does, and then taking breaks to jump up and down. Yet, I felt comforted in knowing that he would be there next year, and the year after that. I felt comforted that all of these people are him years from now, and how privileged I felt that they were paving the way, for it is a tough way, like swimming up a rapid flowing stream.

It is rare to sit in a room with so many other autistic people, some walking back and forth in the lunch room humming to themselves in a heightened perhaps even ecstatic state, where I can only imagine in other less accepting settings, would be frowned upon. When I came to squeeze into the small space where this young man hummed to deposit my lunch tray, he politely moved away to make room for me, extremely aware despite the fact that others would believe otherwise.

When I saw him next time in the leisure area, he was asking others to play a board game with him. Other autistic kids were hanging out together, and sprawled themselves out on couches in front of the TV, not unlike other teenagers. Around the grounds, people wore badges that indicated if they wanted to talk, if they would only talk to people they knew, or if they did not wish to talk at all. There were many times I wanted to flip my own badge that indicated the latter – as I am a person who likes to absorb and observe, yet have been taught to socialize and be diplomatic and suffer from a compulsion to keep that impression going. Although it’s a skill I’ve acquired, I still find it exhausting. I wished that those badges existed at the many functions I have attended, where most people pretend to be something that their not, or interested in things that others say that they actually have no interest in at all. I consider all the wasted time I’ve had to spend doing "small talk." and all the time I spend in explaining life as we know it to people who don’t have the time to understand.

The heat was oppressive this time of year. Yet, we were shaded by trees. My hair unkempt and my skin moist from the humidity, I unraveled. I could do what I needed to, to think. We were free to lie down during lectures, or roll up and be comfortable on the otherwise uncomfortable frayed wool couches -- remnants from the 1970’s. No lights were on in the summer heat, the hard-working garbled hum of old air conditioners tilting precariously in the windows of the lecture room.

The atmosphere was as honest as the discussions were. We tried to figure out how to manage all the issues confronting autistic people today, how to give another message to parents that there are more options than they are aware of – because they don’t hear it when all they hear about is ABA (in Canada specifically). The atmosphere was welcoming, where fear and confrontation were strangely absent. Strange because it is a sad reality of autism politics these days – where some non autistic people never get exposed to disabled people to hear the real views and issues. It was strange as it was relieving. This was autism, and it was comfortable. I didn't have to be appropriate, I could say when I had to leave without a guilty fuss. No one will judge me here. And no one will be judged.

It’s called Autreat. It’s a place I’ve never felt or experienced before, and I will want Adam to come again so he too can be fortified. Adam’s fortification is what’s tantamount here, as I try to raise him so that he knows who he is with autism, amidst a world that doesn't understand it or explains it inappropriately. It is important that he understand himself as not a defect, but as a person. It is why we as parents cannot accept misery rhetoric, because no matter what level of “functioning” (that term means nothing as it has no bearing on either intelligence or awareness), no autistic child should have to grow up in an inhospitable environment that threatens their self-worth. Inhospitable and unsafe environments are those in which we seek to normalize and reward normal responses to tasks where the autistic response is never acknowledged, rewarded or accepted, thus valued. By never rewarding an autistic person for being autistic, we threaten their self-esteem and identity. Most will grow up being confused because every well-intentioned therapist was so “nice” to them.

We have to train our therapists and clinicians to understand autism – because most of them currently do not. They do not yet understand how an autistic person learns. They turn to operationalized methods that all seek at this time to make the child not autistic, without valuing the autism. DRI and RDI are also designed to “create a mind,” or have a child "play normally" to which the autistic audience gasped in disgust. What are those "gurus" implying? That the autistic people who could sit and listen, and contribute, either verbally or in writing need to re-create their minds in a fashion that suits the rest of the so-called "normal" population?

I surmised that many parents are and are reluctant to give up ABA becasue they may not understand that there ARE so many options and so many opportunities to educate and for a great quality of life. The latter is what hopefully unites us. What disunites us is the definition of what that quality of life entails – a life with or without autism. I seek the former because I have seen that we can live a good life, thank you very much.

Quality of life is not determined by whether or not you drive a car, but rather, what you make of your life, and your attitude. Autistic people are capable, and how can we express to parents who only see -- particularly those whose children who are more profoundly affected by the disabling aspects of autism – sensory issues, anxiety, no spoken communication – that their children are there and aware.

How can we express that the most important thing – our children’s right – is to be who they are, but to provide AC (augmentative communication) in the absence of speech, instead of trying to force them to talk when they cannot.

How can we express that it is the teachers and clinicians who must learn how an autistic person learns, and not expect a typical response that can render an autistic person a robot. (All an autistic person ends up learning is to respond the way the instructor wants so that they can get the hell out of there).

How can we express the dangers of therapies that try to teach in a way that is not natural – for our benefit so WE can feel satisfied that the child has responded – that the child may in the future as a result of such approaches, not understand who they are?

This is the most important aspect. Know who you are. Accept your autistic child for who they are because this will allow them to know themselves. Pave the way for acceptance and yes, teach. But learn first. Learn how an autistic person learns and keep trying to adapt until you find the method that clicks with your child. That will constantly change.

Be a parent, not a therapist. Do not treat your child as a project, but rather, treat them and raise them as a child. Model actions so that a child can learn. Do not expect typical answers to “what is this?” and other typical questions. Find out ways to pull out what the autistic child does know. Do they know and answer better on the computer? Then use that. Accept all forms of communication, for they are valid and real. We are all obligated as parents to find the AC that works best for our children. That is their right to have over and above all those other therapies and monies wasted on “behavioural therapies.”

Allow breaks for autistic children to re-focus. Truly seek to understand their sensory needs. Do not offer artificial reinforcements, like “good talking!.” They are fake and the child will know it. Accept echolalia as sometimes the only language a child can retrieve, particularly in moments when they are overwhelmed, and then listen to what their body language and faces are telling you.

Most parents want the best their our children. The difference is in how we regard autism – a medical disease, which it is not, or a disability with social implications, in other words, we have to deal with the societal barriers that obstruct the opportunities for our children. We cannot accept the latter. We must accept autism and move on with the real barriers – the attitudes that will continue to proliferate segregation.

We need to be advocating for inclusion in the school system and for the accommodations that need to be made to acquire that. We need to educate others as to the value of doing this – for all children, not just the disabled ones – in cultivating sensitivity and understanding. We need to teach our children how to advocate for themselves – yes, even the non verbal ones. And for those who are more profoundly affected by the more disabling aspects of autism, we can seek the help of other autistic individuals to be mentors and to advocate for the services that do not degrade and oppress others.

The one thing we must do is to make other parents aware that there are so many options about which they hear little or are belittled by an ABA movement that continues to espouse inaccurate facts about ABA under the guise of false scientific “proof.”

We need to stop participating in genetic research studies which determines only “prenatal risk” and threatens the existence of autistic people. This research is done under the guise of providing “better and earlier interventions,” which are non existent. What babies need is love, support and engagement like any other baby. The only purpose of this research is to determine genetic risk factors. We do not hear about research that seeks to help autistic people be the best autistic people they can be.

We need to redirect our attention to merging help (with the more disabling aspects of autism) with respect (respecting the autistic person’s right to exist) and realize that there is life beyond an over-simplified “cure.” Further, helping the more disabling aspects of autism (anxiety, sensory issues) can exist outside of a "cure" for autism.

I urge every parent (but for those who visit this blog, I bet I’m preaching to the choir), to actively seek out the alternatives and become proactive in not accepting strategies that change your child to “appear normal” because they will ultimately be very damaging to their self-image as teenagers and adults, and we will have greater problems to contend with later. There are options outside of ABA which takes time from you to actively watch and listen and respect your child.

Above all, as Anne Donnellan said in 1984, “make the least dangerous assumptions” about your child. Or as Douglas Biklen said, “presume competence.”

“The least dangerous assumption states that in the absence of absolute evidence, it is essential to make the s assumption that , if proven to be false, would be the least dangerous to the individual.” (Zach Rosetti and Carol Tashie from the Communicator, Autism National Committee Newsletter, Inclusive Education edition.)

The constant banter that autistic or non verbal people who do not look you in the eye are “not there” or “not aware,” or “cannot speak for themselves" is an extremely dangerous assumption. All people can speak for themselves in many different ways.

Are we listening?

23 Comments:

Blogger kristina said...

I didn't realize you were going to attend----we might have tried then to make the trip down too! Thanks for the report and the inspiration.

11:57 AM  
Blogger Suzanne said...

Autreat sounds amazing! Not meaning to be critical... not in a mean way, but I wonder if waving hands in the air is ASL for "applause".(first sentence)

12:16 PM  
Anonymous Anonymous said...

Probably the best start to changing attitudes are with older grades in the school system who are not autistic. They could be taught to act as mentors to younger autistic children. I have always found that what you learn as a young person has far reaching effects because you are so open to new ideas and learning.

2:26 PM  
Anonymous Ms. Clark said...

wow. Thanks, Estee. I bet it was wonderful. Did you take a video camera?

2:28 PM  
Blogger Bev said...

Thank you, Estee. I wish I could have been there; unfortunately it was not possible this year. I very much appreciate what you have written here.

2:56 PM  
Blogger Natalia said...

yes suzanne, as far as i understand it, waving hands is the way the Deaf cause (visually) the same impression as we hearies do (with sound) by clapping. i actually think it's much prettier than regular clapping.

9:11 PM  
Blogger Estee Klar-Wolfond said...

Yes, it was the ASL sign for clapping....

Actually, I just got an autistic mentor for Adam. Although I don't disagree that young people can learn tolerance and acceptance if they are integegrated with all kinds of people at a young age, I also feel strongly that autistic people should mentor autistic children.

8:04 AM  
Blogger farmwifetwo said...

My little one had a boy for a reading buddy. I was amazed and pls'd, usually they find the "girl" with the most patience... I met the boy in the public library, he's about 13... they had an great year as reading buddies.

I don't think they just need others with ASD to mentor with, only friends of all varieties... I've even been told he has a "girlfriend" in his class that is just determined he's going to play with her... and from what I understand he's teaching her, more than she's teaching him. This is what matters to teach inclusion and acceptance.

As for preaching to the choir... "waves hands in the air"... ME!!!

S.

8:18 AM  
Blogger Suzanne said...

apropos of nothing here, but...
Does anyone else have this problem?
Starting from the Hub, if you click on Estee's name, instead of the blog entry's title, the whole text appears to link to a 404 http://oracknows.blogspot.com/2005/10/eugenics-and-involuntary-euthanasia.html/
weird

8:21 AM  
Blogger Sharon said...

Fabulous post Estee.
I wonder how to get this message over to more people, the people who do not regularly read your blog. In Ireland, as in Canada, autism is always mentioned as a terrible thing affecting children, who need treatment via ABA. There is as we know, so much more and so many better ways to empower and educate. How can let people know this?
I'd love to see a branch of TAAP in Ireland, or some similar organisation.

8:44 AM  
Blogger ballastexistenz said...

I don't think a mentor is something you can "get" for someone. Either there is a mentoring relationship, either that relationship develops that is, or it doesn't. And the key to that is exposing someone to a wide variety of autistic adults and seeing who they click with, not choosing a mentor for them.

10:55 AM  
Anonymous Anonymous said...

Lovely post. I was so grateful to hear about it. Still hoping to help with TAAP in US....
- Missy

9:39 AM  
Blogger mcewen said...

"autistic or non verbal people who do not look you in the eye are “not there” or “not aware,” or “cannot speak for themselves" is an extremely dangerous assumption." - too right, an assumption I was all too guilty of myself [still get caught out occasionally now too]
Cheers

3:48 PM  
Blogger Rachie-Babe said...

Thank you so much for stopping by blog! You response was so much more elloquant than what I was able to get across!!!

5:34 PM  
Blogger A Bishops wife said...

"The constant banter that autistic or non verbal people who do not look you in the eye are “not there” or “not aware,” or “cannot speak for themselves" is an extremely dangerous assumption. All people can speak for themselves in many different ways."

I agree with this statement too and I know I have been guilty of this also. What a wonderful blog!

6:26 AM  
Blogger Estee Klar-Wolfond said...

Amanda,

That's how it has happened. We know an autistic man who has come to our house many times and he and Adam seem to bond well. I am hoping that the man will come more often to play music with Adam and do whatever. I agree that a mentor is not something you "get" artificially. You are exactly right. It comes from meeting other autistic people and happens over time, but I did have to ask this gentleman if he would be willing to spend time with Adam on a regular basis.

8:16 AM  
Blogger Estee Klar-Wolfond said...

Camille,

No I didn't take a video camera this year because I didn't know if it would be too invasive, although Autreat does record all of its sessions and discussions. Now that I have become more familiar with it, I will take a camera next year -- but not without permissions!!

8:27 AM  
Blogger kristi said...

Awesome, makes you think!

2:52 PM  
Anonymous Rhonda said...

Estee - you have become a hero to me. I love your approach and your attitude. I think you have also coined a new phrase for the pity party mentality - misery rhetoric - I love it. Keep up the good work you are a JOY.

Rhonda

4:51 PM  
Blogger dina the mundane and oblivious said...

I love reading your posts, it is very heartening to hear about so many incredible autistic adults existing out in the world.
My son, Ben, is 4 and autistic and he has just started ABA. I think that it's important to accept autism, but I also know that Ben must be able to survive in a "normal" world because one day we simply won't be there to care for him. If he doesn't learn to translate his autism so that he can live with the majority of the population, I am not doing him any favours. If ABA helps him do this, is it a bad thing? When you go to a country where you do not know the language, you will be shut out of many experiences until you can speak the native tongue. I think that autistic people can learn the language of us dull normals and still embrace their differences.I would be very interested in knowing what is out there besides ABA, we don't have many resources that I'm aware of in Montreal.

1:13 PM  
Blogger ballastexistenz said...

That's good to hear Estee. I was worried because one program I was in called the staff "mentors", but they were really just staff.

5:45 PM  
Blogger Estee Klar-Wolfond said...

Dina said: "I also know that Ben must be able to survive in a "normal" world because one day we simply won't be there to care for him. If he doesn't learn to translate his autism so that he can live with the majority of the population, I am not doing him any favours. If ABA helps him do this, is it a bad thing?"

I don't think it's up to our children to be "normal," no. I think there is some reciprocating that society has to do to understand people with disabilities. ABA does not accomplish this. It seeks to normalize.

I do, however, agree that there is very little support but moreso understanding and sensitivity. We don't see government support for AC devices, for family-appointed shadows in the classroom for training educators to understand autistic learning so that we can provide a better overall education. I also think that one-to-one instruction can help -- as long as the autistic child is respected for who they are and their behaviour is not looked upon in that "deviance from the norm" way. Certainly, we have to attempt to teach some skills and/or provide the supports that will keep our children safe.

I hope you had a chance to view that TVO AGENDA piece. I think it explains the point of view extremely well.

As for ABA there is plenty of evidence to support that it's all pretty much hype, and very problematic. My view is we have to provide teaching and support that first seeks to understand autism and autistic learning and yes, teach skills. But if you look at the way that most ABA'ers look at teaching, they are only rewarding normal response. Is the child learning? Does the child understand what is being asked of them? We know that modelling what is expected of them adn teaching and really self-scrutinizing as teachers is more helpful than ABA check lists and R+ of "normal response."

I am extremely concerned about the latter and how that will effect the autistic child's self-identity as teenagers and adults. Because every therapist is so "nice," but never rewarding autistic response, what then becomes of the autistic person who will always be, think and act, autistic?

8:54 AM  
Anonymous resilientmom said...

I am the mother of a 19 year old young man who happens to be autistic. I wholeheartedly agree that approaches vary and that the typical world at large, requires education tempered by humility.
Whether it's acceptance or intervention, we all need to work hard.
ABA is a remarkable tool, but alone it creates an automoton that regurgitates language. RDI provides an attempt toward relatedness. I cannot find fault with any gesture to move forward or progress. The idea is not to 'plateau'. Frankly, that should be our goals for all of our children.

9:03 AM  

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