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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

Thursday, October 25, 2007

 

If Not Now....When?

"If I am not for myself, who will be?
If I am only for myself, what am I?
And if not now, when?" --- Hillel the Elder


I am struck this week. I am puzzled by the questioning of a basic ideal. I am asking myself why some do not understand the inherent and deserved rights of others, without feeling they are sacrificing the support they need. I am struck by complacency -- perhaps it is because we have a society over-wrought with "problems," -- be it global warming to so much poverty in the world -- that people don't have the same "space" to give to disability issues. I am struck by how we create and manufacture our own problems and the problems of others.

There is simply no need for a polemic. People are deserving of their basic human right to be presumed competent -- and it is our obligation to find every possible way to enable self-expression of the individual. When it takes the form of a groan, a behaviour, we have an obligation to accept that as valid communication. Families who are having difficulty in supporting disabled offspring deserve the gold-standard of support, so that their lives and the lives of their children will be well-lived. And we do not fit into the "normal" paradigm. Forget that paradigm. It will just make the process painful.

Do you know how hard it is to get AAC training here in Canada?? Virtually no one will give it to you. Wait lists are two years and longer and autism may not even be considered a "developmental disability" in some cases in order to qualify. Even those involved in ABA will eventually agree, that IT and communication boards are vitally important. In many cases, a child will not be able to physically communicate with speech. Some days it will come, other days it will be impossible to come by. It is the nature of the disability. Why can't we agree that it is utterly important that we are trained to support our kids when they're young, with AAC (sign language, or other IT or augmentative systems)? Kids should be learning literacy skills, live daily in a text-rich environment. While language isn't all about speaking, it is about understanding, reciprocity, and learning how to express not just wants (that is easy for many autistic people who cannot speak fluently), but an expression of SELF.

Can we agree to a variety and/also of approaches to get our kids what they need????

But as long as we paint autism out as something we can get rid of, the scenario may never change -- as long as there's the POSSIBILITY that one child can be "cured" or "recovered," then too bad for the others -- they're the "victims." I think that's a lousy way to brand ABA or any autism "service" or charity -- some of which I outlined in my paper "The Mismeasure of Autism: The Basis for Current Autism "Advocacy." We know autism is a life-long disability and we need to support our kids now. Too often, many kids wait fifteen or more years until parents realize that this enablement with communication tools, is so vitally important, if not an entitlement of all disabled individuals.

Looking through Different Roads to Learning catalogue today, I see lots of neat things to help autistic kids learn. Lots of new devices, but still old books on old ABA methods, Lovaas, and not enough books from autistic people who can help the parent and clinician understand and teach the autistic child. The ABA community is looking into methods outside of its original framework, which is a tacit acceptance that there are many tools that can help the autistic child and adult -- and that is a good start.

I hope this community will, however, discontinue its solely negative referencing of autism as something horrible. It is challenging for all of us, no matter what the resources available, and indeed, if there are fewer resources, all the more challenging. At the same time, I know that Adam gives me so much joy and I feel he deserves so much more than what Canada offers to autistics today. He deserves to be viewed as a valuable person. He deserves access to programs and schools. He deserves to have a shadow who understands and empathizes with his way of learning and seeing the world. He needs early access to literacy programs and AAC and IT. He deserves early programs (we call them intervention, but I'm not keen on that word for various reasons and implications), that engage young infants in play, not table-teaching and aggressive "look-at-me" programs, that clearly do not understand autism as a disability. Even autistic infants deserve that play, even if it's more deliberate. At the same time, autistic kids should be allowed their down-time, not bombarded with interventions that deliver the message (you're no good the way you are, you're doing that wrong so let's engage you 24/7).

Balance, dear friends. Family should fee a little more freed to spend time to just "be together," than constantly engaged to "fight" autism. If I have to retrace our steps when Adam really began to learn(it was not like he wasn't learning before but it's just that the autism diagnosis made us THINK he wasn't really learning or that what he was learning on his own like the alphabet, colours, numbers and words, was not really learning per se, but 'rote learning,' or what Dr. Laurent Mottron has coined this perception as 'dead-end intelligence'), it was when we let go a bit.

It took us time to feel confident enough to let go of stricter ABA therapists and supervisors and VB programs. I liked some ABA therapists more than others -- particularly those who were reaching for something greater, who, while they were still ABA therapists, saw that there was still more to understand out there. I could also feel who really valued Adam for Adam, while others smiled a lot and "really wanted to work with autistic kids." As nice as that sounded, alarm-bells went off. Like, why just the autistic child? Why not ANY child? Was Adam their...pity project??

While my innards were telling me that Adam was happier, learning and had much more social interaction with us when we played with him and swung him in the blanket, we were still teaching him by following the ABLLS. I acknowledge that everyone has to come to terms with their child and be confident with their own choices and themselves over time. There is no other way I can suggest it. When I get calls from parents who have newly diagnosed children, I tell them how I think Adam is terrific, but they will have to find their own way through all the information and tugs out there. I remember when someone said to me when Adam was diagnosed that I would have to accept him, I didn't understand. I thought that was a cop-out and I had to do more work with him. Four years later, I clearly understand what people were saying to me.

We have so much choice. We have play, we have more AND/ALSO options that Canadians must advocate for. As I push for Adam's entitlements, I keep thinking of all the other families I know on waiting lists, struggling in over-crowded public schools. We must keep asking and we must do it NOW.May we do it by keeping the dignity and value of our children, and the autistic people who came before them, in mind.

15 Comments:

Blogger Autism Reality NB said...

"There is simply no need for a polemic."

And yet that is what you deliver. With the usual anti-ABA attacks.

10:39 AM  
Blogger Estee Klar-Wolfond said...

Autism "Reality"

Excuse me, who came in right on cue? :)

No, I am not attacking ABA. I am never attacking the support of parents or support for them and autistic individuals.

I am criticizing the way your group has chosen to market for ABA (at he exclusion of so many of us who want more for our children and who do not agree that ABA helps them exclusively) and the way your group has chosen to represent autistic people and the way your group has chosen to exclude autistic people from participating in "your" dialogue.

Now...who has created the "polmeic?"

10:43 AM  
Blogger Joseph said...

Don't you know that ABA is above scrutiny? It shouldn't be questioned or doubted. It shouldn't be studied further with more rigorous methodology, lest you want to hurt kids in the process.

BTW, I read the post and I did not see any "attacks" on ABA.

10:58 AM  
Blogger Estee Klar-Wolfond said...

I also want to say that I find it truly puzzling that Autism "Reality" does not wish to make room for services that can truly help a diversity of autistic individuals, based on valuing autistic people in our society. This exclusivity to "one thing only" to "cure" autism is what is locking our children out to the many other possibilities. I am not going to play ping pong with Harold. Many autistic individuals are finding him tiresome and damaging to their basic human rights. He's got his own blog to express his views.

His is a tactic attempting to intimdate many parents (do this or you'll be doomed). I will also not accept that his victimization of the ABA parents. After what they say about autistic people, I find it grossly hypocritical and frightening and I will continue to speak out against their rhetoric until it stops for my son's sake. No one is denying the challenges, but to paint children and human beings out as "a living nightmare," is truly out of character with the daily 'reality' that many of us live.

In fact, I may no longer respond to Harold Doherty unless he mis-characterizes me or the acceptance movement -- which he does consistently.

Harold Doherty is also inconsistent in his arguments, with the exception that he wishes to be oppositional to basic human rights, and oppositional it seems, for its own sake -- because instead of signing on for ABA exclusively in Canada and we do not fit into the ONLY ABA marketing model.

The "reality" is, that there are parents who want more than "one kind of therapy," and whether you wish to acknowledge it or not, the ABA community is tacitly accepting this "reality" by including various other "methods" into his repository of teaching exercises (thank goodness...it's a beginning). It is exactly here which is a good place to begin working together and I am continually puzzled why the ABA community doesn't wish to participate.

I am interested in helping autistic people contribute to society as autistic people. I am not interested in regressing into oppositional dialogues for the sake of it. I keep extending a hand to ABA advocates to include in their lobbying, the mosaic of services that autistic individuals require. Harold dismisses it every time. Now what does that say about his interests and the interest of truly assisting autistic individuals in the manner they say they require assistance?

Finally, the "reality" is, there is a human rights violation going on, and that is getting overshadowed here. No one is accomodating autistic individuals so that they can speak to our politicians, our teachers, our public. ABA advocates like Harold, call them "not autistic." They parse human beings into divisions of "high functioning" and "profoundly disabled," thereby suggesting that one group might not deserve assistance and that the other group is more "victimized," and NEEDS ABA and nothing else. And, by this latter suggestion, they are implying that "profoundly disabled" people are less worthy of their basic rights and entitlements.

Uh uh. Here we are saying okay, let's move forward together. We've got autistic people who can help us learn. We've got a myriad of possibilities being employed in the US and overseas EXCEPT FOR in Canada, and we need to cooperate to get it all working together.

11:27 AM  
Blogger Navi said...

As I read various blogs on topics including autism, I keep getting reminded how lucky I am to be where I am (in the States), and in the intermediate school district I'm in.

His school uses the positive aspects of ABA, and also uses Occupational Therapy, PECS, Speech therapy, and so on. It's a very small class, with about 8 kids and at least 5 adults. We were in a good district that worked to get him in the program he is in, as they did not have the all of the supports necessary for him, so they got him in as soon as a space was open and he was old enough. I'm sure there's more I could be doing, but the support of this school district makes me very happy, especially when I sometimes feel so powerless to understand and help him.

11:54 AM  
Anonymous -Brian- said...

The quote at the beginning of the post reminded me of some of the lyrics (by Paul Anca) of the song, "My Way":

"What is a man? What has he got?
If not himself, then he has naught;
To tell the world what he truly feels,
And not the voice of one who kneels..."

Yes, each one of us autistics can say, truthfully, "I did it my...way...", and, like you (Estee) said, it must be done for each one of us: "MY...WAY..." NOW! We have waited for milleniums for others to treat us with dignity, despite our "different ability".

4:36 PM  
Blogger Jannalou said...

I could also feel who really valued Adam for Adam, while others smiled a lot and "really wanted to work with autistic kids." As nice as that sounded, alarm-bells went off. Like, why just the autistic child? Why not ANY child? Was Adam their...pity project??

Just as a note...

I was, I am, and I will always be one of those who "really wants to work with autistic kids."

Initially, it was because I wanted to help them learn, help them be normal, whatever. But as I grew and learned alongside my "students" - as I also began to interact online with autistic adults - I came to the point where I could (can... will) say that I want to work with autistic children because I respect them and I want to help them learn who they are and how to navigate the non-autistic world.

The enthusiastic "I want to work with autistic kids" can be an either-or situation. And I'm beginning to wonder if, based on what I've experienced and what I've seen, it becomes more and more difficult for those who value autistic children as autistic children to find work in the field because so many people are pushing for normalcy, and we aren't about that.

I refuse to advocate for "normalcy" - it doesn't exist.

8:50 PM  
Blogger Alyric said...

I could personally make a plug for OT, which we found really helpful - no idea why though. Cynic that I am, I find that in the helping industries there's precious little in the way of 'evidence' for any of it. We didn't have any need of speech therapy but I've always liked jypsy's attitude on it - go for the lot - PECS, sign, ACC - whatever is out there that assists in the acquisition of language. I don't know why this is even controversial. We don't know much about it but the evidence is very clear that human infants and chimp infants develop at the same rate until language kicks in and then the human infant leaps ahead. Denial of aids in the development of language (not speech) is surely a very dumb thing to do.

8:21 AM  
Blogger Casdok said...

My boy is terrific to!

10:54 AM  
Anonymous -Brian- said...

Quoting Jannalou:

"I refuse to advocate for 'normalcy' - it doesn't exist."

The same could be said of "disability". As many have already said (over many years), disability, itself, does not exist; persons have a "different" ability than others, and to treat anyone as having a "normal" ability is to spread discrimination against those with a "different" ability".

4:18 PM  
Anonymous farmwifetwo said...

The piece of paper you refer to in Ontario is an IPRC - Individual Placement Review Committee report. And it states "the school board must provide...."

If, I in my little rural school can get Writing with Symbols in a Gr 1 classroom.. you can get it in Downtown Toronto. If you nag enough.

My biggest problem isn't that I'm going to lose 39min/day to another student starting in Jan. It's a teacher that is actually scared of my son. Which is a joke b/c if you ever had to have a severe ASD child... this easy going, happy-go-lucky child.. is the one you want.

School is still fighting the board for more support... PDD Teacher was in today to help with the transition and will continue to do so.

It's there... you have to be willing to fight for it.

And lose... a lot of sleep.

As for Autism NB... he'll never change... then again neither will you. But, reading your article, you think I'm a poor ASD parent since my eldest is Casein free.

http://farmwifetwo.blogspot.com/2007/10/on-fence.html

S

3:13 PM  
Blogger Jannalou said...

Brian:

I agree, and I've stopped (or, at least, I've tried to stop) speaking about disabilities, problems, and issues as they relate to so-called disabilities. I prefer talking about people who have diagnoses, and speaking of the differences within that paradigm.

I, as an ADHDer, have a brain that processes information differently from a non-ADHDer. This means that I will approach things in a different way than non-ADHDers do, but I often manage to get everything done anyway. Sure, there are some things that seem impossible for me, but then I look at those things and begin to wonder just how necessary they really are for me to be happy. If I am happy without being able to do certain things, then am I really disabled?

Now, there is a question to ask.

12:39 AM  
Anonymous -Brian- said...

Quoting Jannalou:

"If I am happy without being able to do certain things, then am I really disabled?"

That is where I would say that you are not "disabled", per se, but "differently abled", a term that no government (or even medical professional) will accept.

To them, the issue is a pure black-and-white question: Are you abled or are you disabled? Every time that I try to tell these "dualists" that I am neither, ...that I am "differently abled", they are lost and unwilling to accept the answer. To them there are no shades of gray, at all (let alone colours of the spectrum).

The other perspective on your question is whether being "happy" can be considered the absolute end-all for everyone. As on medical person once told me: "As long as you are happy--that's what counts!" In thinking over that statement, I wondered if a person was simply contented (as I was when I walked through the woods, alone), but not necessarily happy, per se, was it my "duty" to become "happy", or find a means towards that goal?

Again, that is where semantics and the meaning of words plays a big role in human communication, as what is a "happy" (and imperative) feeling to one might be seen as a side-issue to another--who finds that other subjective preferences take hold more than just being "happy"...such as safety, or future consideration.

When you, Jannalou, stated, "...[I] begin to wonder just how necessary [those things] really are for me to be happy", I would even question whether happiness, itself, is really necessary.

9:49 AM  
Blogger Jannalou said...

Happiness is, indeed fleeting.

Contentment, however, and deep & lasting joy... these are things I already have.

My quality of life is good enough, even with the "limitations" placed on me by my "disability", that I do not really need to try to be "normal".

I think that what we need to be focusing on is the quality of life of individuals, and basing it on each individual's subjective notion of their own quality of life. What is fine for me is not going to be "good enough" for someone with different expectations and abilities. That has a huge impact on quality of life. So do the messages we are bombarded with daily via the media.

In essence, I think what I'm saying is that disability is not an objective term any more than quality of life or happiness are.

11:46 AM  
Anonymous -Brian- said...

Jannalou, when you mentioned the "focusing on...the quality of life of individuals, and basing it on each individual's subjective notion of their own quality of life," I couldn't more agree.

That said, I still have had run-ins with other autistics, one in particular who was adamant that, beyond any subjective preferences, there had to be an "objective reality" that all of us are complete bound by, over which we can have no control at all, despite any subjectivity on our part. That is where I begged to differ with that person in that I see everything as subjective, and that none of us are bound to something we do not want, no matter how adamant others are that it is "for certain", or "inescapable" (or other such term).

Like you say, even disability is not an objective term, and neither is the term "expert", despite all the papers, memberships, or whatever that try to prove, objectively, that that person is "above the crowd". That person is on the same level playing field as you and I, and subject to the same subjective processes of life as anyone else--his "qualifications
notwithstanding.

8:24 PM  

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