Growing Pains in the Autism Community
As many of you already know, there has been a heated debate about leadership in the autism community. As the founder of The Autism Acceptance Project, I am obligated to this community to say something about what I believe.
I do believe wholeheartedly that autistic people must speak for themselves and lead the way in terms of autism "awareness," and "rights." I put rhetoric in quotes because we all know that the same rhetoric can be used by individuals who really do not support autistic people. I take the posts by Joel and Larry very seriously and I've been thinking about them the past few days. (When I get out of this Starbucks where I write while my son is in school, I'll find the link button to his blog which has disappeared for some reason here).
You can hear how TAAProject came about on interviews and at the talk I gave at MIT. For the purposes of those who do not know the story, I will tell it again. I was the corporate chair of NAAR. I became disenchanted with the way that they promoted autism and that there were never any autistic people speaking on their stages. I became disturbed at the rhetoric of Autism Speaks and this apparant avoidance in engaging autistic people. TAAProject became incorporated on the heels of the first Jonathan Lerman exhibition in 2005. Then, came the Joy of Autism: Redefining Abiltiy and Quality of Life lectures and a second exhibition of more autistic artists, and many other autistic invidiuals who came to the lectures and opening night. It achieved some attention. My thinking is that anything that gets the attention of others to focus on the greater dialogue happening within the disability community itself was and is necessary. It was the reasoning for TAAProject.
I began the organization because I had the will and the wherewithall. Organizing anything takes time, money and effort. I asked autistic indidivuals to have a greater role. Some became board members, some "advisors," and others declined because of the fact that many organizations after a period of time, lose their purpose and integrity. There are many autistic individuals who are wary of that and for good reason. Other autistic individuals declined because they said that they couldn't organize something like TAAProject. While I've organized this, I can't do it alone. I won't. I am a determined little gal, that's for sure. But I think the discussions of late have made me think about where the "autism movement" needs to go.
This is also the reason why TAAProject has moved forward carefully. Any organization must set its goals and attempt to achieve them. That requires some consensus. Sometimes, as we've seen in some organizations, there is so much in-fighting that consensus is not achieved. So let me ask this entire community: what is the goal here? As we talk, we must extrapolate one and work towards achieving it together.
I do not wish to be the Executive Director of TAAProject forever, believe me. I would like to remain involved. I want to finish a book, I want to raise my son and I have other boards I sit on. I would LOVE to hand this project over to an autistic individual to lead or even co-lead, and even if it's not TAAProject, it must be done (it is in some self-advocacy organizations). TAAProject will support the work of autistic self-advocates. To me, the goal of the project is achieved at when the public begins to listen, when there are so many self-advocates that we are happily redundant, when we begin to see REAL CHANGE in autism "services," beyond JUST the ABA model, and I hear public dialogue about how it is important to cultivate an inclusive society (in schools and beyond).
What I have experienced with TAAProject is an outreach. Right now, I can say that in receiving this gift becuase of founding TAAProject, I am very grateful. As a parent, I've been able to learn from autistic people, and hopefully provide a forum on the website and at future events, to have autistic adults heard. I live in Toronto. Believe me, there is a huge shortage of understanding and a large patronizing of autistic adults in our neck of the woods. At the conferences I've spoken at so far in Toronto, NO ONE HAS HEARD OF AUTISM HUB OR ANY AUTISTIC SELF-ADVOCATES outside of Michelle Dawson -- and even so, not everyone even knows about her unless they are politically inclined. The reality is, the ABA advocates and Autism Speaks have cornered the "autism awareness" market so far.
There are few schools that accept autistic children -- many parents experience a funneling to autism-specific schools. Most ABA providers who must fulfill Toronto Preschool Language Service (TPAS) requirements are such poor providers of ABA, as we have experienced, that I feel many autistic children are needlessly held back because of it. Imagine only meeting your "supervisor" once a month for a mere hour on your child's progress and programming -- I know that Adam's learning fluctuates weekly and no supervisor could ever keep up with his progress or his ever-changing needs. Most therapists have a perpiphery knowledge of autism through the big charities and outdated theories. No therapist I've met are even aware that this dialogue is going on. Most have some little ABA certificate they earned at a local college or some seminar. The Board Certified Behaviour Analysts I've met are so rooted in technique that they literally ignore the child right in front of them. There is gross overgeneralization of "autism edcuation" under the ABA model, and one's child is often subject to a check list of skills that the child must learn at $25-$30 an hour for a junior therapist -- some kid. In other words, there is no real thinking behind why they are doing what they are in most cases. The child is just seen as being in need of remedial 'therapy,' and the child's individualism is ignored. A child's behaviour JUST BECAUSE THEY ARE AUTISTIC is viewed as bad or abnormal. Imagine the autistic child who wants a cookie and whines, cries or even has a meltdown because they cannot get that cookie, and is treated for his or her autism instead of just being viewed as well, a child in a battle of wills. Believe me folks, it has happened in my home by therapists who have come and gone. Of course, I will also say, there is always an exception to the rule. While I am not a big supporter of ABA, there are other parents I know who do it. ABA in and of itself is as someone put it a "shorthand term" for Occupational Therapy, Speech Language Therapy and one-to-one teaching in many cases, so in the true sense of the term, it is not really ABA, but is called so for funding purposes at the moment. So, let us focus on the more fluid approaches to education that service the autistic child by looking at challenges and innate abilities and learning styles. We may all dig into the same tool box at times, but I can never subscribe to a "way" of educating each and every autistic child. I think that parents from both perspectives can agree that our children deserve better and that there needs to be an awakening of the real abilities and NEEDS of autistic children, as well their right to be with others.
I also think that to disagree on these very issues also facilitates the changes we all need. While Sue Rubin may want a cure for autism, other autistics will not and to discuss the complications and ethics of the idea is important. Does Autism Speaks ever have these dialogues about what autistic people want -- what they agree and even disagree about?
Dialogue is what is painfully missing here. The public thinks that autistic people who talk and think DON'T EXIST or are AN EXCEPTION TO THE RULE. This is so dangerous. And why might they think this? Because they need support, and the talking autistic person doesn't fit the raison d'etre for the funding plea -- and I do think there is consensus that the way in which funds have been requested has been degrading to not just autistic people, but to all people belonging to any disabled community. The idea that if you can't talk or "function normally" you are not aware or sentient is offensive to everyone belonging to this community.
The public is unaware of the very issues that face all disability communities today. While the deaf community cannot agree about implants so too the autism community may never agree about ABA or cures. And that, my friends, is the way that a society progresses -- through this dialogue. What I want? For the dialogue to change the way people talk to, provide opportunities for, make friends with, provide access to, provide quality services for, and hopefully one day employment to...Adam.
Autistic adults in Toronto and surrounding communities also have real issues with respect, understanding and employment. These are some of the issues that TAAProject has not yet addressed. Yet, our autistic board members are talking about it.
If TAAProject does not serve the needs of autistic individuals, then it will cease to exist. Period. I can advocate for my son and for what he needs as an individual. I'm not sure if would be as effective as doing it together, if only for this purpose of learning together, because there is so much learning (on my part anyway) that still needs to be done. Or, if TAAProject can exist as an organization that supports autistic individuals by raising these issues as parents, we MUST support autistic self-advocates as THE LEADERS in this understanding about autism.
I can think of other non autistic supporters who have built mechanisms by which many parents have come to learn more about autism from autistic individuals. Autism Hub is one of them. I do want to see more autistic people participate more rigorously. I do want to hear suggestions of what TAAProject might be doing or doing better. What is very use-able, is our website. This community can use it in different ways. We have nearly 500 members by viture of being on the web for just under a year now. For any organization, that is significant, believe me. That means, members receive monthly newsletters. That means, we have government officials who receive them. Autism Hub gets readers. It seems to me that autistic people do have to pick this up rigorously. We have the tools, we've built them. How does this community want to see them used? How can we take advantage of all the skills and tools we already have?
And to be honest, I wonder if we would be having this wonderful discussion at all without the coming-together of parents, allies, and of course, autistic people at all. This working together must never cease, even if Autism Hub or TAAProject no longer exist.
Are these what we call "growing pains?"
I do believe wholeheartedly that autistic people must speak for themselves and lead the way in terms of autism "awareness," and "rights." I put rhetoric in quotes because we all know that the same rhetoric can be used by individuals who really do not support autistic people. I take the posts by Joel and Larry very seriously and I've been thinking about them the past few days. (When I get out of this Starbucks where I write while my son is in school, I'll find the link button to his blog which has disappeared for some reason here).
You can hear how TAAProject came about on interviews and at the talk I gave at MIT. For the purposes of those who do not know the story, I will tell it again. I was the corporate chair of NAAR. I became disenchanted with the way that they promoted autism and that there were never any autistic people speaking on their stages. I became disturbed at the rhetoric of Autism Speaks and this apparant avoidance in engaging autistic people. TAAProject became incorporated on the heels of the first Jonathan Lerman exhibition in 2005. Then, came the Joy of Autism: Redefining Abiltiy and Quality of Life lectures and a second exhibition of more autistic artists, and many other autistic invidiuals who came to the lectures and opening night. It achieved some attention. My thinking is that anything that gets the attention of others to focus on the greater dialogue happening within the disability community itself was and is necessary. It was the reasoning for TAAProject.
I began the organization because I had the will and the wherewithall. Organizing anything takes time, money and effort. I asked autistic indidivuals to have a greater role. Some became board members, some "advisors," and others declined because of the fact that many organizations after a period of time, lose their purpose and integrity. There are many autistic individuals who are wary of that and for good reason. Other autistic individuals declined because they said that they couldn't organize something like TAAProject. While I've organized this, I can't do it alone. I won't. I am a determined little gal, that's for sure. But I think the discussions of late have made me think about where the "autism movement" needs to go.
This is also the reason why TAAProject has moved forward carefully. Any organization must set its goals and attempt to achieve them. That requires some consensus. Sometimes, as we've seen in some organizations, there is so much in-fighting that consensus is not achieved. So let me ask this entire community: what is the goal here? As we talk, we must extrapolate one and work towards achieving it together.
I do not wish to be the Executive Director of TAAProject forever, believe me. I would like to remain involved. I want to finish a book, I want to raise my son and I have other boards I sit on. I would LOVE to hand this project over to an autistic individual to lead or even co-lead, and even if it's not TAAProject, it must be done (it is in some self-advocacy organizations). TAAProject will support the work of autistic self-advocates. To me, the goal of the project is achieved at when the public begins to listen, when there are so many self-advocates that we are happily redundant, when we begin to see REAL CHANGE in autism "services," beyond JUST the ABA model, and I hear public dialogue about how it is important to cultivate an inclusive society (in schools and beyond).
What I have experienced with TAAProject is an outreach. Right now, I can say that in receiving this gift becuase of founding TAAProject, I am very grateful. As a parent, I've been able to learn from autistic people, and hopefully provide a forum on the website and at future events, to have autistic adults heard. I live in Toronto. Believe me, there is a huge shortage of understanding and a large patronizing of autistic adults in our neck of the woods. At the conferences I've spoken at so far in Toronto, NO ONE HAS HEARD OF AUTISM HUB OR ANY AUTISTIC SELF-ADVOCATES outside of Michelle Dawson -- and even so, not everyone even knows about her unless they are politically inclined. The reality is, the ABA advocates and Autism Speaks have cornered the "autism awareness" market so far.
There are few schools that accept autistic children -- many parents experience a funneling to autism-specific schools. Most ABA providers who must fulfill Toronto Preschool Language Service (TPAS) requirements are such poor providers of ABA, as we have experienced, that I feel many autistic children are needlessly held back because of it. Imagine only meeting your "supervisor" once a month for a mere hour on your child's progress and programming -- I know that Adam's learning fluctuates weekly and no supervisor could ever keep up with his progress or his ever-changing needs. Most therapists have a perpiphery knowledge of autism through the big charities and outdated theories. No therapist I've met are even aware that this dialogue is going on. Most have some little ABA certificate they earned at a local college or some seminar. The Board Certified Behaviour Analysts I've met are so rooted in technique that they literally ignore the child right in front of them. There is gross overgeneralization of "autism edcuation" under the ABA model, and one's child is often subject to a check list of skills that the child must learn at $25-$30 an hour for a junior therapist -- some kid. In other words, there is no real thinking behind why they are doing what they are in most cases. The child is just seen as being in need of remedial 'therapy,' and the child's individualism is ignored. A child's behaviour JUST BECAUSE THEY ARE AUTISTIC is viewed as bad or abnormal. Imagine the autistic child who wants a cookie and whines, cries or even has a meltdown because they cannot get that cookie, and is treated for his or her autism instead of just being viewed as well, a child in a battle of wills. Believe me folks, it has happened in my home by therapists who have come and gone. Of course, I will also say, there is always an exception to the rule. While I am not a big supporter of ABA, there are other parents I know who do it. ABA in and of itself is as someone put it a "shorthand term" for Occupational Therapy, Speech Language Therapy and one-to-one teaching in many cases, so in the true sense of the term, it is not really ABA, but is called so for funding purposes at the moment. So, let us focus on the more fluid approaches to education that service the autistic child by looking at challenges and innate abilities and learning styles. We may all dig into the same tool box at times, but I can never subscribe to a "way" of educating each and every autistic child. I think that parents from both perspectives can agree that our children deserve better and that there needs to be an awakening of the real abilities and NEEDS of autistic children, as well their right to be with others.
I also think that to disagree on these very issues also facilitates the changes we all need. While Sue Rubin may want a cure for autism, other autistics will not and to discuss the complications and ethics of the idea is important. Does Autism Speaks ever have these dialogues about what autistic people want -- what they agree and even disagree about?
Dialogue is what is painfully missing here. The public thinks that autistic people who talk and think DON'T EXIST or are AN EXCEPTION TO THE RULE. This is so dangerous. And why might they think this? Because they need support, and the talking autistic person doesn't fit the raison d'etre for the funding plea -- and I do think there is consensus that the way in which funds have been requested has been degrading to not just autistic people, but to all people belonging to any disabled community. The idea that if you can't talk or "function normally" you are not aware or sentient is offensive to everyone belonging to this community.
The public is unaware of the very issues that face all disability communities today. While the deaf community cannot agree about implants so too the autism community may never agree about ABA or cures. And that, my friends, is the way that a society progresses -- through this dialogue. What I want? For the dialogue to change the way people talk to, provide opportunities for, make friends with, provide access to, provide quality services for, and hopefully one day employment to...Adam.
Autistic adults in Toronto and surrounding communities also have real issues with respect, understanding and employment. These are some of the issues that TAAProject has not yet addressed. Yet, our autistic board members are talking about it.
If TAAProject does not serve the needs of autistic individuals, then it will cease to exist. Period. I can advocate for my son and for what he needs as an individual. I'm not sure if would be as effective as doing it together, if only for this purpose of learning together, because there is so much learning (on my part anyway) that still needs to be done. Or, if TAAProject can exist as an organization that supports autistic individuals by raising these issues as parents, we MUST support autistic self-advocates as THE LEADERS in this understanding about autism.
I can think of other non autistic supporters who have built mechanisms by which many parents have come to learn more about autism from autistic individuals. Autism Hub is one of them. I do want to see more autistic people participate more rigorously. I do want to hear suggestions of what TAAProject might be doing or doing better. What is very use-able, is our website. This community can use it in different ways. We have nearly 500 members by viture of being on the web for just under a year now. For any organization, that is significant, believe me. That means, members receive monthly newsletters. That means, we have government officials who receive them. Autism Hub gets readers. It seems to me that autistic people do have to pick this up rigorously. We have the tools, we've built them. How does this community want to see them used? How can we take advantage of all the skills and tools we already have?
And to be honest, I wonder if we would be having this wonderful discussion at all without the coming-together of parents, allies, and of course, autistic people at all. This working together must never cease, even if Autism Hub or TAAProject no longer exist.
Are these what we call "growing pains?"
13 Comments:
Well said. Thanks for pushing forward.
Who speaks for the autistic children who can not speak for themselves and who face different challenges then those who can write fine internet essays?
Powerful post, Estée.
The disagreements and conflict are not easy but I think they are part of a real dialogue.
Most of all----seeing certain other autism organizations in a "civil war" I hope the voices and viewpoints here can keep up the conversation. This is a vital community with a real message to say, and we have to stick together----we know who is not our ally.
Harold,
Not you or me. It takes a community that INCLUDES autistic people.
Your comment reveals an abelism (for those who are not familiar to the term it is akin to racism) that I'm not sure you want to keep endorsing. I think the better way is to stop and listen without accusing and excluding others.
Bloody hell Autism reality you are way off beam there,
When you are accused of a crime you get the best lawyer you can, cos that lawyer has a better way than words then you, and can banter in judge speak, yeah?
You want a good advocate for autism, wouldn't you prefer someone who has a foot in the autism world to someone who has not, who also has the ability to bandy words with the professionals?
But then this ain't where the action is anyway, and really you want some piece of crapola speaking for autism that justifies the killing of an autistic as per the Autism squeeks Goebells job?!
Estee the problem is in your last comment, for it betrays the power inequality, for if the community you are speaking of has power to include autistic individuals, then so it also has to exclude, and it is power play, de hauteur in that you condescend to include us from a position of beneficence and magnanimity for which we peasants are supposed to be greatfull.
I hope you understand what I am saying there and don't take it as a personal affront, because I think you are better than that.
When the mighty and powerful are prepared to give space to those beneath them and not to get angry if they hear what is unpleasant to them, then that IS progress.
Hi Larry,
Glad you're back. I think I do understand your argument and if I do, you are right that yes, this is an issue of power if orgs have to "invite" autistics to participate. It was not what I meant or intended to express.
I see it that it is ESSENTIAL that autistic individuals and individuals from the disability community continue to advocate and organize. In whatever shape or form that befits that community (and is effective for achieving the collective goal).
From a personal stance, I found the Hub refreshing because it brought autistic people together with parents. Yes, there was a blogging world and autistic self-advocates before the Hub, and there will always be so.
I find the autistic self-advocacy organizations and individuals to be the MOST IMPORTANT sources for my learning about the issues and now the people I could never ignore. (It baffles me how any parent could).
But I need your help, and the help of other autistic people, in understanding where to go from here. There should be more autistic -directed advocacy groups. More autistic individuals might need to advocate more often in the political arena. Some autistic individuals here in Canada have become despondent over the fact that a non autistic politician won't listen to them at all -- and there seems to have been a lot of letter writing campaigns executed by certain individuals here.
Can an organization gather people who are interested in the same goal in order to achieve that goal? I'm not saying it will or should be TAAProject.
But where to? I'm not invested in TAAProject for myself or as a person "who wants to do good."I was motivated like most people are motivated, for better or worse, because of my son and the inequities we experienced already when he was (and is) so young.
I find education to be an important source for understanding and change. That is what I have attempted to do, as much as I still have to learn, when I started doing what I did.
I hope I'm making sense.
This discussion, along with a few before it on this and other blogs, as I see the issue, is one of semantics--the understanding of words, and all the intricacies of their meanings.
What does it mean to "include", as some have pointed out, without the power to "exclude"? What is the need for "respect" when it might give the notion of "disrespect"? What is the issue of "equal rights" for people with disabilities, when those who have the power to decide could deny equal rights?
It's like what happened to me years ago, with a bank, when the first debit cards came out. I was given the card, but did not use it for about a week. Then, I used it to purchase something from a store. A few days later, I went to an automatic banking machine (ABM), to withdraw a small amount of cash, but the machine did not return my card, or get me the cash. When I went into the bank the next day, I was told that there was a one-month "waiting period" for me to keep the card but not to use it. When I reported that I had used it for one debit purchase, the bank said that they made a mistake, and forgot to make it so that I could not use it for purchases. They immediately revoked the purchase option until the "waiting period" had expired. By being honest, I was penalized.
It's like autistics are being given the "red carpet" treatment, only to have the carpet pulled out from under them, in many issues.
The question for me is: What would it take to stop this form of "backfire" against autistics? When an autistic gives a blunt, no-holes-barred answer that might shock a few people, should that autistic be tolerated, or should the "morality" of those present be brought full-force against that autistic for saying what was said (or behaving in a certain way)? When I enter a discussion, and someone asks me a question about autism, is it up to me to frame my answer as to what that other person is looking for in an answer, or to "tell it as it is", even if it creates total mayhem for a few at that meeting? Where do you draw the line between correct answer and acceptable answer on issues that are so vague, at times, that it is almost impossible to get a consensus?
It's like what a teacher told the class in Grade 4: "Don't believe that two plus two always equals four. If you take two couples, and add two couples, you have eight people." What is unquestionable to one person is often totally open to discussion (and to all the variables) for another person...
"it is power play, de hauteur in that you condescend to include us from a position of beneficence and magnanimity for which we peasants are supposed to be greatfull"
Bollocks Larry. Turning this into a power struggle is a dumb idea IMO. This is not what I would call an example of a blunt no holds barred answer. Designed to shock? Sure. Designed to further autistic advocacy? How?
I've waded through the system now for 5 yrs and 2 totally different children. I've dealt with ABA.. totally unimpressed... before/after/during the process.
My dh belongs to organizations and council and any "do" I'm at the MP and MPP's see me and run the other way :) No it's not that bad :)
I'm going to get screwed next year over an EA for my youngest son b/c the TVDSB is .... UGH... not going there either. Will have to look into a PDD classroom or homeschool.
I was on bbbautism.com and I refuse to join such another group. I'm tired of the "militancy", the "diet" club (my eldest is cf - makes him stoned), the "mercury" club, the "ABA" club. I have a few ASD blogs I enjoy... the rest... not interested in.
We live with ASD in my house. Both ends of the spectrum. We don't live for it. Not one of our friends have children with ASD, and they don't care that ours do. I expect one day my eldest will be as close to whatever normal passes for in our society. My youngest will probably by in Community Living's custody - but again.. anything is possible.
I guess, what I'm trying to say is.. instead of defining yourselves and continuing the labels into adulthood (for the high functioning..) what not just be people. My eldest.. the fully verbal one... has no idea he's different than anyone else.. and he's nearly 8. I only use the label to get services.
S. - who if someone ever tested.. probably has Aspergers and I don't care.
Quoting farmwifetwo:
"...instead of defining yourselves and continuing the labels into adulthood (for the high functioning..) what not just be people."
I tried that for fifty years, as I was not able to find any designation, let alone diagnosis for all of those years. However, the bullying, the lack of acceptance, and the sleeziness of others towards my lifestyle was present all of those years, despite a lack of label.
At least, with a label, I can now join in with others who are looking for acceptance, respect, and an understanding of how joyful life can be even if you are just plain "different" than the crowd.
I did try to live my life, as you said, but others would still chastise me for not going along with "common sense" or "herd conformity" ...every inch along the way.
Therefore, the push is still there... to show that people with "autistic" traits (diagnosed or not) still deserve more than just "lip service" from politicians, educators, employers, medical professionals, scientists, and even parents, to gain an "equal right" in the society of which they form an integral part.
Without that "equal right", they are just slaves, with others treating them as economic commodities that "drain" the system; whereas, with "equal rights" they will be able to fully show their joy in living, and their deep and meaningful contributions to all cultures...
Estee, I'm too nice to ugly up your comment thread with my opinion.
Just know this, You do a great job.
You and I are very different people with very different ideas about a bunch of stuff. But we have a common interest that unites us.
http://farmwifetwo.blogspot.com/2007/05/if-it-wasnt-for-us-geeks-nothing-would.html
I saw Temple Grandin in May. An excellent lecture.
See I'm tired of hearing how "society must accomodate this group or that one".. I'm tired of listening to the US Military wives that are complaining b/c nobody understands them and the ASD cliques.
EVERYONE in society has their "thing". EVERYONE. From illness, to lifestyle to to to to to... there's a million of them out there.
EVERYONE is entitled to recognition and support b/c of that thing.
In a perfect world.
Life isn't like that...
Which is why I guess I was pls'd when I heard her.. I hadn't planned on going until I talked to some friends.
IMO "Autism is the reason. It's not an excuse". And once I'd heard her I feel that his her attitude as well. If you go into my blog under "A Thought went up my mind".. or "Cranky Otter"... you'll find others that realize they don't "fit the mold"... probably have Aspergers too...
I also appreciate the limitations of the disorder b/c I don't know if my little one will end up in Community Care. I do know... that unless major changes are made to the current Ed system for something as simple as 1:1 support (I don't expect the world...I can hire extra therapy and services and do)... he's SCREWED.
But society as a whole, isn't going to change... so either we find ourselves a niche in it... or we go crazy trying to be who we aren't. I've opted for the niche... but I don't need a label for it. And I shouldn't need a label b/c a VP says "It's just a learning disability.. he doesn't need extra help". Which is why I fought and fought... to get the eldest a dx. NVLD w/ S/L delay (he's fully verbal now, still some language delays). Not necessary IMO with a properly written IEP.
Wonder if that ramble made any sense :)
S.
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