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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, March 24, 2007

 

The Right To Choose

No matter what you do or what you write, there are some in the blogesphere who make up the facts or try to persuade people that to do anything other than an ABA program is akin to driving your child over a cliff. They are persuasive, I know. I know because I was at a place for two years where although I became angry at the poor quality of ABA service here in Toronto, it was still hard to let go because there is little else provided. To this day there are people who came from behaviourist backgrounds on Adam's team because in autism's recent history ABA has been the only funded service for autism. Many ABA therapists, however, still know little in how to employ a real literacy program, an assistive device program and more. An early ABA program is fairly rigid. If it’s play-based and incorporating other strategies, it is no longer an exclusively ABA program. So perhaps we need to rename our advocacy to address an autism program – one that is devised specifically to each autistic individual with the goals and means that befit them. Of course, I’ll never say this without also adding that we need to continue to understand autism primarily from the people who are autistic.

As parents, we will always have doubt – one is not human without it. It is like an embedded checks and balance system. Still, we must ultimately trust ourselves and our autistic children. Too often, many put little faith in autistic kids. Yet, to inspire the greatest fear – that it is necessary to employ 40-60 hours of "treatment" or everything is doomed -- is cruel to the parent and the child. Most of the advocates who speak like this (who say that this kind of therapy time is necessary) have older children who still require accommodations and service. The message: panic doesn't pay (at least emotionally). Some children will grow up "looking less autistic" than others by virtue of who they are and yes, the environment they live in to some extent (I can't answer that nature/nurture argument and, it seems, neither can science). Therefore, finding ways to accommodate all autistic people throughout their lives cannot happen with fear as its engine. It will not help us think logically. It will only provoke us to react in emotional ways that may ultimately harm the autistic person.

ABA is not our first choice in this household. I have seen programs, however that call themselves ABA that are not quite ABA anymore. In addition, the scope of autism is so diverse, that one type of therapy suited for one child may not be suitable for another. The ABA advocates, about to March at Queens Park and in Ottawa don’t want us to have a choice. They don’t want speech therapy to be funded, or occupational therapy, or assistive technologies, or play therapies. They want every child to receive ABA “treatment” that many parents in Canada do not want exclusively or not at all. Others may think that if they choose this one treatment now, that either,

1. they will at least get a service -- the "better than nothing" philosophy;
2. or the autism strategy will evolve after ABA has been legislated.

Many of us want our autistic children to receive a variety of services and an ability to choose what we feel is best for our children. We want groups for our children to belong to, camps to go to, programs to participate in that are not all ABA driven, but sensitive to the needs of our children. "Regulating" programs (one has to consider the measures we use to regulate) in the schools will only create a one-size-fits-all service that will not meet the needs of everyone. I recognize that the "right to choose" has real ethical implications and the treatment of autistic individuals can be compromised, and every discussion about education for autism must take place under this umbrella.

Even though we see the tide turning for a greater variety of services for autistic individuals in Ontario, the ABA advocates can’t endorse it because it wouldn’t support their claim that ABA is “the only scientifically proven therapy” for autism. Yet, we all know better. We all know that we need a greater understanding of autism than we already have, that we need to work harder, and that this is not the end of the line. Autistic individuals deserve more than the premise that ABA bases itself upon (to make autistics "normal"), and a better quality of accomodations and service.

A friend of mine came to me and said, “but isn’t scaring people the only way to get the government to do something?” Does Autism Speaks’ tactics – claiming that we have an epidemic (when we don’t have the science to substantiate that claim), in order to get more research and services -- the best way? Is calling autism a disease akin to cancer a panic button to get politicians to listen? Perhaps. No one said that government officials listen readily, with so many others vying for dollars.

But does the end justify the means? Does advocating for ABA help obtain more services, or does it take away the opportunity for a better quality of service such as inclusive education, and a diversity of options for an equally diverse population? With so many parents using social skills groups, OT, SLP, and other play-based strategies, shadows, life skills training, and more, should we not be including all of this in our advocacy efforts? In so doing, should we not make the government aware that there is a greater problem here that strikes the entire disabled community: the right to be accepted, accommodated and included? The ABA advocates completely disregard what the disabled and autistic communities (in this case, people who are autistic) have to say about all of this which should shed some light on the bigger problem here.

It strikes me as suspicious when a group attempts eradicate any other voice when we only have so much more to gain for the greater autism community by opening this up. We all have autistic children, we have autistic self-advocates in our country, and we all need a place at this table.

7 Comments:

Blogger mcewen said...

This is a very tricky one. I can understand the lobbyist tactics [especially in the light of medical insurance over here] but fundamentally, you're absolutely right about the need to tailor services, all of them, to the individual [adult and child].
I just don't know how you do that though?
Best wishes

10:41 PM  
Blogger Club 166 said...

Money corrupts, and government money corrupts absolutely.

Whenever there is the possibility of obtaining a sure stream of government funding, it is only natural that the potential receiver of such largess will actively try to stifle any competition. It ceases to be about helping people, and becomes all about the money.

12:47 AM  
Blogger Autism Reality NB said...

You should take time out from your hostility towards ABA and parents seeking ABA interventions for their children to learn a bit more about ABA.

ABA is an intervention. OT and SLP, to pick two of your examples, are professions not intervention methods. Many in these professions use ABA methods. SLP's in BC have been using ABA methods while working with Autistic clients for a few years now. The CASLPA has literature on its site in the past in which an SLP talke about how useful he found ABA in working with autistic clients. ABA is not simply discrete trial training and various tools including social skills training, social stories, PECS are utilized in ABA programs.

I have never seen an ABA advocate state that others should not be able to choose different approaches for their children. If you can provide a link to a source to back up such a claim I would be interested in reading it. YOU on the other hand consistently and sometimes misleadingly advocate AGAINST the use of ABA.

4:52 AM  
Blogger Estee Klar-Wolfond said...

Hi again Harold,

I have lived ABA. I do not wish to impede a parent's right to choose, however, I have lived through the poor quality of service that Ontario's ABA agencies have provided. The services that SLP and OT have provided have been much more sophisticated specifically in helping my son. In his case, his ABA program took away some of the skills that were acquired with me, and were difficult to achieve. They were learned in play and in observation. With so many trials and a therapist believing that all they have to do is look at a check list and that's it, then they miss so many opportunities and they miss looking at the so many other aspects of the child.

If I am concerned it is that a poor quality of services is all that parents and autistic children are going to get, when we need to work together to understand autism much better. I've seen how ABA agencies work with OT's and SLP's. For years, ABA completely disregarded the sensory aspects of autism. They see SLP as a side-line to their therapy, not necessarily as an integral part. Perhaps only now there is a greater acknowledgement of these aspects of teaching - culling from various methods through what we continue to learn.

I wouldn't say I'm hostile, Harold. I am confused again. On your blog you want to create a black and a white and leave no room for grey. Moreover, I am wondering why, as a parent who shares concern for their autistic child, you don't want autistics and parents like myself a part of this process. No one wants there autistic child to NOT receive the education, accomodations and service they so rightly deserve.

7:01 AM  
Anonymous Anonymous said...

Would you believe that an ABA provider, a behaviorist, can provide all of the things you indicate you choose for your child, without being less behaviorist? Applied behavior analysis is a way to understand behavior, understand who we are, how and why we behave like we do. It is also a science which has effective techniques to help change behavior to improve the life of the person whose behavior is being considered. I have been helped by behavior analysts and my life has improved because I was part of applied behavior analysis. I do not have autism.

I have been reading your blog once in a while and also posts of people who share some of your opinions about ABA.

It is terribly sad that I am accused, as a provider of ABA services, of demonizing autistic people, of not providing loving programs, not providing tailored programs, destroying the human spirit, of disseminating the hysteria.

I work with a group of professionals providing ABA services to autistic children and I make sure that they learn to love each and every child they work with; that they learn to respect each and every family and include their input and wishes into their programming; that they look at each child as one, a very special that has a personality that needs to be respected; that they don't try to take the autism from the child, but that they contribute to the developing of that person, by learning how they learn and helping them participate in their family and community.

I wonder what kind of professionals have crossed your path to make you feel this way, to make you accuse all of us with such terrible adjectives, that do not describe how we work, how we feel about other human beings, no matter what label they carry. You would be surprised about the respect we learn to have by any other human being just by having studied behaviorism. A good behavior analyst for example would never disseminate personal judgment about a class of people or professionals like you do.

I believe bad professionals have hurt you, but it is unfortunate that they made you advocate against everyone else in the world because of their affiliation with behaviorism. I would also reject anyone near my child who didn't show respect for who my child is. I have met many families with a similar history but they were not coming from ABA services. Any professional can be good or bad. And behavior analysts are not what you accuse them of being.

You could reach more people if you didn't identify the as ABA professionals because there are plenty of professionals who are what you accuse us of. It would be a great service to autistic people and their families to identify negative characteristic of professionals instead of demonizing the behavior analysts, because those bad professionals are everywhere, working under any affiliation.

I respect you very much and I agree with many things that you say, for example that scaring people about the autism epidemic is not a good way to disseminate information about how wonderful autistic people can be, that curing autism is a terrible moto, I agree with characteristics you indicate good services need to have. But the personal attack to behavior analysts is really detrimental to all.

11:57 AM  
Blogger Estee Klar-Wolfond said...

Dear Anonymous,

One of your paragraphs you say: “I believe bad professionals have hurt you, but it is unfortunate that they made you advocate against everyone else in the world because of their affiliation with behaviorism. I would also reject anyone near my child who didn't show respect for who my child is. I have met many families with a similar history but they were not coming from ABA services. Any professional can be good or bad. And behavior analysts are not what you accuse them of being.”

First, let me clarify: I am not a victim. I was not treated “badly” nor was my son per se. I notice infractions of treating people, autistic people, with dignity. Indeed, this can happen IN ANY therapy, IN ANY school at any time. However, the reason I target ABA, or epidemic rhetoric and the like, is when the premise of regarding autistic individuals no longer respects autistic self-advocates, or will not open up the table to dialogue about the issues that our children face on a societal level – issues concerning self-determination, self-advocacy, and the ethics of treatments. I know many wonderful teachers, ABA or not. I decided that to use the terminology or to impose a premise on my son that does not respect him fully (“make him indistinguishable,” “stereotypy is the enemy,” “inappropriate” and the like) is not a methodology, or perhaps now we can call it an ideology, I wish for my son. Terms like that are the reasons for the “demonizing” term you also mentioned. Terms that suggest an autistic individual is a sub-form of human risk the negative social view of autism.

I believe there are answers in moderation. I believe some ABA therapists have answers as do non ABA teachers. I have seen in my home former ABA therapists working in various methods I have described. We try hard to work together to find Adam’s answers. The concern I have is the rhetoric by a faction of people to describe autistic individuals in a way that offends people with autism and a larger disabled community. I don’t believe that accommodating parental concerns and the needs of the child must be at odds with one another, unless there are truly human rights and ethical infractions – and with the advent of new technologies we must continue to debate these (the Ashely Treatment is one example). Anyone engaged in a competition of victimhood, or in “demonizing” the other – a catch all phrase in autism these days really now only signifying little else than an argument over whose right or wrong, (which is not it’s original context to suggest that, as history has shown, the disabled have been villanized in stories and fables and common ideas) – is simply engaged in a finger-pointing game. If you have really read my blog, you will notice that I acknowledge that there is good and “bad” in even the things we think are ideologically correct. No one method or ideology is free from this risk of abuse. BECAUSE of the way ABA has been advocated for by a certain groups in Canada, I believe we have to do better and acknowledge a greater largesse of autism and ways of educating autism, that are being done, but go unacknowledged right now at the political level.

I do believe there are moderates everywhere and in these areas we can address the issues that really face autistic individuals and work towards a better accommodation. We have to deal with our greater responsibilities as a society and we must agree to debate the ethical issues. What strikes me as this keeps getting funneled into a pro or con ABA debate, and the advocates who do address me here in this blog, will not even enter the ethical debate at all. They do not apologize for their tragic referencing, or what’s been referred to as “devastation rhetoric” about autism in the least.

2:05 PM  
Blogger Zaecus Celestis said...

This is something I don't understand.

What you say would, from my own experience, definitely be good for autistics, but... why does it have to be an autistic education issue?

Why can't it just be about education?

Autistics aren't the only ones I hear complaining about the industrial, assembly line approach to education that has turned public education from something wonderful into a horrifying experience for far too many who don't fit the mold of a perfect, obedient student.

At first, I cringed at every mention of an "IEP", but the more I have thought about it, the more I have realized that what makes me react that way is that it's considered a 'necessary evil'. Why should treating each student, regardless of their neurology, physiology, psychology, and more ephemeral talents be such an unusual method?

If I read my history correctly, it used to be the 'standard' teaching method, at least, for the good teachers.

The industrial age brought about a lot of good and bad things; standardized ecudation, imho, being one of the bad ones. I've been convinced for a while now that treating everyone in the way that works best for us, which starts by treating us as people then as unique individuals would be an amazingly positive thing for everyone.

But maybe, I'm wrong? Maybe, in spite of everything I read and hear and see that indicates otherwise, those who are neurologically typical -need- that sort of educational approach. I certainly wouldn't want to interfere if they do, but it seems a shame that something necessary should leave so many people so sad and scarred for having experienced it.

11:57 PM  

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