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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, March 01, 2007

 

Teaching Versus Remediating



I'm about to give two examples I’ve observed which illustrates the seemingly minor, but hugely important differences in treating children with autism. Often when I say I don’t do ABA in my home, people think that the alternative is doing “nothing,” – as Brenda Deskin loved to misrepresent me on CFRB, “it’s okay that she let’s her son stay up until 2 in the morning.” Well, this is just silly. After speaking with some parents who did visit Dr. Lovaas with their children in California, I am actually astounded at how much they let their kids, now teenagers, get away with. Maybe that therapy is just too hard to keep up at home -- so exhausting to try to get a leopard to change its spots.

Parenting is parenting. We establish rules and boundaries for all our children, it is no different for autistic kids. The difference is in how we treat our children – to respect their will because they are trying so hard to communicate (or have us understand their communication). Adam may be hankering for a video for instance, but that does not mean he will still get it, if we need to do something else.

Let me illustrate the difference I’ve observed:

Adam is crying. He hasn’t slept. I run up the stairs to see what has upset him so.

“No, no, Adam. Stop crying and then you can watch the video,” says his new therapist waving the video box, who comes from a behaviourist background and is brand new to our home.

Adam cries harder, his eyes are fixed on that video box. I watch for a bit and intervene.

“Adam, we know you want the video,” I say. Adam stops crying immediately. “Let’s just calm down a bit and then you can watch it.” Adam calms down for a moment, a little residual upset bubbles. “It’s okay. We know you want the video.” He calms down immediately again. The video goes on. Now the therapist didn’t want to "reinforce" his crying, and certainly for any child who acts like a brat, I would say yeah to that. But, Adam was tired and hadn’t slept all night so there was a reason for his tears. For a child who can’t use words to talk, he sure is communicating. And he was really tired. Any four year old would make a fuss when they’re tired, and Adam makes much less than most I’ve seen. Adam, who can’t talk should be dealt a little more respect because it is so much harder to communicate. I’m not so sure if the goal of not having him cry was useful here, as Adam may not trust this therapist for not having understood his exhaustion. But this is a learning curve for many therapists, so I am patient. [By the way, Adam loves this new teacher and this teacher watched the taped program of Amanda Baggs with me and left a certain centre because of DTT methods. The teacher is listening to my comments and is very receptive. This sort of dialogue and working together -- including my receptivity to others' suggestions is one of the things that makes a good teaching situation for Adam -- because it questions everything. I've also maintained a relationship with another teacher who comes to my home for three years who came from an ABA background and we've been continually learning together and she is a gem. Also, after I initially wrote this post, Adam saw this teacher and was ecstatic to see him, so there was certainly no harm done.]

It is the ability to self-reflect as a teacher that is vitally important here too. As long as autistic children are viewed like belligerent "brats" when all they are trying to do is communicate, as exemplifed in this instance, they will be subject to this kind of discrmination. Certainly, if Adam continues to act up and think he can simply cry for everything he wants, I wouldn't just give him the video. However, he is not like this. Most of the time, he is just trying to communicate and I can easily negotiate with him by understanding and acknowledging his communication.

I’m not saying that I know much about parenting, but I do know something about parenting my son, Adam. I am suggesting that we can all do our part to really observe behaviours and ask ourselves whose purpose we are serving when we are making certain demands. These may seem like minor adjustments, but they are major to the child. They are major in stating “I understand what you want, or that you’re upset.” It is major because it is the difference between accommodation and correction or remediation.

I have another example. I took issue with a behaviourist who came to the park with me where Adam enjoys picking up the sand and letting it run through his hands. Instead of saying no or making a fuss (it’s a behaviour that no non autistic person can understand, but uses a subjective judgment to determine that it is aberrant), I just say to Adam “let’s go on the slide.” It’s not that I care about the behaviour per se, but I am there also to play with him, so we do a bit of everything – sand play, slides, climbing, see saw and so forth. I simply invite Adam to join me, and he usually does. I always let him enjoy his sand, though.

The behaviourist came with us once, grabbed Adam’s hands and stopped his “stimming” in front of everyone. In fact, she grabbed his hands aggressively to stop him and moved him on by pushing him. She wanted to do it over and over again, and it seemed like Adam also wanted his sand more than usual when she did it. Instead of arguing with her there, I said “let’s go home,” to end this “session” as soon as possible. Afterwards I told her that that I was uncomfortable with what she had done and I could see that we weren't seeing eye to eye so we agree to disagree. (She doesn't teach Adam anymore, but she certainly "cares" in her ABA way, a way that doesn't match my idea of caring. So the lines get really fuzzy.)

Yet, here is a child who has such a hard time being viewed as a whole human being, and this person wanted to “correct” him in public, thereby stigmatizing him more in front of people we knew. It’s like trying to beat the Adam out of Adam, or as some refer to as remediating his autism as if it is separate from him. I guess I should ask if you can beat the blindness out of the blind? Even the idea that autism is separate from the child's being and experience, is to suggest that autistics should not be taught the way other children are taught. It doesn't respect the disability and does not ask us to question ourselves or make a better effort to learning about autism and how we can best teach our autistic children or accomodate their learning style.

Further, all one has to do is to look at Michael Moon’s photographs to see what the rest of us cannot – for playing with dripping objects, sand, water, is an enthralling activity, visually. Michael’s artwork gives us a glimpse into that outstanding world. And who knows what other learning is going on that is atypical, but certainly not less valuable or even fantastic.

It is a fact of life that the therapists out there in autism all come from this behaviourist background. It was the confluence of increased autism diagnosis around 1992 and Dr. Lovaas. The good teachers, however, keep an open mind about autism and evolve their teaching to what we continually learn about autism and about autistic people and how they want to be viewed and treated. The bad ones will always try to correct instead of teach, which calls into question this whole notion of ABA as an “educational tool.” Many of the ABA people are simply doing play therapy embedded with teaching skills. So what we have here is a lot of confusion. Let’s go back to the drawing board to integrate many of our skills, and question the goals of our teaching.

22 Comments:

Blogger Kasey said...

Very insightful post about autism. I appreciate your taking the time to enlighten others with your experiences through your blog.

9:43 AM  
Blogger hollywoodjaded said...

Phenomenal blogpost Estee. I learned a lot from this. Thank-you.

11:43 AM  
Blogger Judi said...

Estée, you have hit the nail on the head with this post. I try and do the same with Andrew. Your story about the park hit home...Andrew is just like Adam. Instead of stopping him, one of us usually invites him to play with something else (usually the swings, he could sift sand or swing for hours).
We are interviewing respite workers right now, I must keep this in mind when we talk about what I want for Andrew.
I love your blog...I have linked it on my own blog...I hope that's ok.

11:49 AM  
Anonymous Dori said...

Thank you for blogging .
You are a very inspiring person.
However,I have to say the behaviorist that you took to the park is unlike behaviorists that I know,thank goodness.
Actually, your method of not calling attention to the behavior and inviting your son to do something else is more of an ABA response. Grabbing his hands to stop him from playing or stimming or whatever she thought it was feels wrong on so many levels.

As you can tell I am a big fan of ABA because it made such a difference in my child's communicative skills.I am not prosletyzing for any kind of therapy. I think everyone should do what they feel is right for them.I wish there were a more concrete path to follow but I guess no parent has that.

12:06 PM  
Blogger Estee Klar-Wolfond said...

Dori,

It's good. I think that many ABA therapists are better teachers than others. I am, however, concerned at how many therapists think they have to teach, remediate, correct or whatever, which leads to my point about perhaps changing names of a "therapy," which runs the risk or being of poor quality, versus the fact that many methods work for autistic children and that every autistic child is unqiue. Once we can acknowledge that one method is the true method or will work for every child, and to view education as such and not remediation, I think we will be able to reach for a better education for all autistic people.

You are right, there is no concrete path. It certainly does take a lot of work on our part as parents. However, we could look at it as also very lucky -- that there is uniqueness in everyone, that there does exist many styles of learning as addresed by cognitive psychologists.This is not a bad thing.

12:15 PM  
Blogger Estee Klar-Wolfond said...

Correction to above: one method is NOT the true method.

12:16 PM  
Blogger Another Autism Mom said...

Hi Estée,

I just think that it is not fair to judge all ABA therapists from the personal example you just gave us. Some therapists are just not good enough, and you have other agencies to try before you give up on the method. The approach they use for my son is much more gentle and respectful than what you've described. Basically he's improving his play skills because the ABA tutors are teaching him how to play games (and while I, as a parent, have tried many times to do the same, they have a more effective way to maintain my son's focus for long enough so he'll actually be interested to learn something new). I see the ABA therapists as my allies. I am successful in teaching my son a lot of things, but there's a lot of stuff that, I have to admit, he's learnt better and faster through ABA.

He's learning how to talk, how to listen, and how to take turns and share... He'll always be autistic, but at least he'll be more able to engage with his peers in a variety of games. He can always retreat to the sand box alone when he wants, but at least it's nice that he'll be able to play hide and seek if he gets invited. He'll have that choice.

And regarding the sleeping problems... My boy goes to bed late, at 10:30 or 11:00, but at least he gets 8 or 9 hours of sleep after that, so I haven't tried the melatonin yet. Have you considered this medication for Adam?

Regards,

1:49 PM  
Blogger mcewen said...

A 'good' ABA therapist can make a world of different if their skills encompass empathy and insight, if they tune into an individual child and their needs. It's one approach of many to be moulded and matched, integrated and adapted. But one who sticks to the 'theory' is likely to have a less successful career, depending upon how you define success.
Best wishes

2:38 PM  
Blogger Camille said...

Diane Twachtman-Cullen (I think that's her name) spoke at a "Summer Insitute" conference in Sacramento two years ago. She's an expert on teaching autistic kids, if I remember correctly. Anyway, she made the point that the thing that works best in teaching autistic children are old-fashioned teaching methods. Like go back to the way children were taught a hundred years ago... and take what works from that. The painting you have on your blog reminded me of that. Twachtman-Cullen named things like teaching rhymes and using repetition. Not that computers or newer technologies would be bad, but they weren't using "behaviorism" back in 1920 to teach kids, the behaviorist might have come along and co-opted some classic teaching methods and "purified" them out of the context of real teaching and claimed them as their own invention, but behaviorists did NOT invent the idea of punishment and rewards and I resent them terribly for trying to say imply that if I reward my child for doing something I'm using behaviorism.

It's like they thieved this chunk of human life and ripped off all the context of the relationship between the rewarder and rewardee, punisher and punishee, and deny the the rewarder/punisher could be flat-out wrong in what they are choosing to notice, choosing to judge as good or bad, and choosing to reward or punish. There's an assumption that the ABA types are inherently going to do the right thing. I think the assumption ought to lean more toward they will "essentialize" the wrong thing and focus on it to the harm of the child, more often than not.

Anyway, autistic children are seen as these other beings, not human children, and so they need "specialists" and "PhD's" to understand them, it's not possible that autistic children were taught in the past using variations on "old fashioned teaching" methods which were common knowledge to all people, or nearly all, because they are necessary to teach children and children have always been around, even before "schools".

I just detest the idea of parents giving up their children to the "experts," to too great an extent. Not to romanticize all parents as the best teachers and all schools as hellish, but lots of schools are hellish experiences for autistic kids.

Ask Amanda Baggs what she learned from her years in grade school. I think her answer was that she learned about sociology (from watching the social interactions between the humans there) and little else. How could Amanda Baggs' early years have been better spent? I don't know, but it doesn't sound like much could have been worse than what she was exposed to/ put through.

2:48 PM  
Blogger Estee Klar-Wolfond said...

Hi Just Another Mom,

Just to answer -- yes -- I used a few agencies, very well known names in ABA and VB. I don't think therapists are "bad." I think every therapist can be a good or an average, or even terrible teacher. I think the ones who are more flexible, who are observant and have learned from other methods can be better too. But then, we are not talking ABA here anymore. So let's ditch the term. It's not what we really mean anymore.

We want our kids to succeed, we want them to be respected, given access, provided accomodations and we want the funding for it right?

However, any means to obtain that that is not above water first, and then paints our children as "devastations" second, is highly questionable. There are so many reasons why we have to move beyond and focus on our wonderful children see what they can do -- and not always necessarily with ABA because our kids CAN learn.

Let's build up on the blocks beneath. Let's learn from our mistakes and the unpalatable things. Let's listen to autistic people and the needs of them and the parents.

I appreciate your response and hope we can all work together.

4:05 PM  
Blogger Another Autism Mom said...

Thanks, Estée. I'm not a hardcore ABA proponent, but I just think it is not as bad as some people say it is. To be honest, we didn't have much choice, because it is the only full-time therapy funded by the state agency and school districts in our area. It would be great if there were different methods available for us to choose, but at this point it's like "take it or leave it". So I'm taking it, and so far it has worked great. Maybe if there were other choices, we'd still have picked ABA, who knows. Of course I'll support any advocacy efforts that would expand the teaching methods available in our area. There's a movement in this direction but I think it will be a few years before other therapies will get established here to compete with ABA providers.

In my opinion, ABA bashing is not the way to go for advocates of other therapies to be successful. Other parents have been using ABA for years with good results, so that discourse may sound radical or out of touch with reality. What they need is to show the authorities research proving that the methods they are proposing will result in good outcomes for autistic kids. Instead of excluding ABA funding, you should just fight for funding for the other methods as well.

4:27 PM  
Blogger Estee Klar-Wolfond said...

Another Autism Mom,

Well, I'm certainly not a fan of the ultimate goal purported by its supporters which is "to make autistic children indistinguishable from their peers." That has ethical issues. If I have problems with it, it is mainly for this and the reasons I cited in terms of its false allegations in order to get the funding and the advocates' utter refusal to consider how autistic people feel about it.

I am not, however, blind to what's ACTUALLY going on out there, and it's not really ABA -- it is teachers doing the work, finding what works in many instances, but not in all. It is taking a natural course of evolution with what we have learned about autism.

As for success because of ABA, I think you might find this post interesting from Michelle Dawson, because it raises questions about the status quo and asks us to look at autism again:

http://autismcrisis.blogspot.com/2007/02/entirely-different-due-to-aba.html

I do agree with you that we need to advocate for accomodations and an understanding of autism so that our children can be taught in schools. I do think that parents should obtain funding for home support and teaching. I do think that parents should be allowed to select their own aide, if wanted, for the safety and assistance of our children -- not have one appointed to us by the school boards if we do not want that person. I do think we have to provide vocational programs and all kinds of activities and opportunities for autistic adults to contribute and continue learning. I do think that more accomodations can be made so an autistic person can go to College or University...

Also, let me quote Dr. Rita Jordan in reference to teaching in autism:

"We would like to mention here another source of danger in the way that some teachers and some authorities adopt training in one particular approach as THE training for autism. The particular training packages that are marketing this way are of variable quality, but our worries do not stem from the adoption of any particular approach, but from the notion that training in any one method will be adequate for developing expertise in working with people with autism." p.19 Autism and Learning: A Guide to Good Pracitce).

I suppose the above doesn't translate well into hard-core funding for the THING, that the state or province needs to see. We need to, as you said, to talk about this when we expand our criteria for funding in autism and in schools and get down to the "how to." We have other disAbiltiy cultures to look to for examples.

One of the first ways we MUST start, is including our autistic adult members on every policy decision and every school board. We are starting do advocate for that here in Toronto now.

I won't be online for the rest of the evening, so I'm sorry if I can't continue this discussion until tomorrow. I thank you again for your comments and healthy rigour.

5:34 PM  
Blogger Another Autism Mom said...

Well, I don't know if the goal of becoming "undistinguishable" is purported by ABA agencies or if it is just the parents' wish. The ABA providers I've talked to were pretty realistic and always told me the outcome depends on the child's individual potential, and that not all of them will do well with the ABA method.

Our ultimate goal is to improve my son's ability to learn and understand the world. Right now he doesn't understand simple concepts such as hot, cold, dangerous, funny, heavy, ugly. He doesn't know what a "store" is. He doesn't know the meaning of "brother" or "friend". I think that, once he's able to understand what he sees and what is being said to him, he'll be fine. We don't care if he stands out as odd or a weirdo, as long as he has the cognitive ability to assess his own situation and make informed choices.

ABA is helping him - at an amazing pace - to learn about things in the world that he wasn't paying attention to before therapy. They achieve that by making the sessions a lot of fun for him. He looks forward to doing ABA. We don't know how far he can go, but he's surely gone a long way since last October.

Maybe he'd learn those same things naturally... But how long would it take, years? And at what cost? Why not take advantage of an available teaching method that helps him somewhat catch up with kids his age?

7:50 PM  
Anonymous Anonymous said...

I saw you blog the Joy of Autism. I have HFA and volunteer on an off in a ABA school. I can't go all the time. It is to upsetting but I love those kids they are so beautiful and I feel bad for them. I am also just learning to get out and am not used to my routine changing but am getting better. I wrote this blog about the school and want to share it with you. There is one bad teacher there and he is mean to the kids. Its a private school separate from a normal school. I think all the teachers are nice but I can't believe that they think this is ok. This man says mean stuff too but I can't remember it to well, I have a verbal processing disorder. He hugs the kids to but with what I share below it means nothing that he is nice sometimes. He reminds me of a school bully. I did not want to put this in a comment in your blog. I am afraid they will know I am telling. They are seen as the 'saviors' of the poor autistic kids in this town and I would never be believed unless someone else saw this too. I don't leave my house much due to autism. Many shared with me that they have seen similar treatment in schools they work in. Not only ABA schools.




I Want To Know What Love Is


I definitely agree in assisting children with autism and aspergers to overcome roadblocks. To not do so could lead to many issues for the individual. I do not care how smart a child is. Without the proper building blocks he will not have the necessary skills to apply his talents. My question is how to help people with ASD to be the best they can be and still allow them to be who they are?

I see on TV so much about helping children with autism and the core goal appears to be "getting the child to ACT normal" I highlight act because that is the point. Many people with autism can learn to act normal. The issue is that on the inside they do not feel normal. We process information differently and that is not something anyone can see on the outside it is the hidden side of autism.

Many people with autism have an eye for detail and I am one of them. I cannot believe that some people can not see what I see. For me it is so clear.....

The children gather in the little lunch room and sit in their seats. Always the same seat. The teachers join them along with myself, the volunteer. Two boys eat spaghetti and eat all of it. They also eat cheese puffs and yogurt. During lunch the teachers laugh and joke with each other, myself included one boy tries to join in. He giggles and babbles in his own language because he knows only a few words. He is told by a teacher to stop laughing that it is not playtime. A look of confusion spreads across his face and I know he is thinking exactly what I am... Why cant I laugh when everyone else is ???? He is trying to participate. Isn't that what we hope for with children with ASD ? DUHHHHHHHH

After they eat their lunch both boys are given a cookie. They cannot eat it. One is timed out. I hear a thunk when he hits the wall in the hall outside the lunch room. I think the other was timed out too but I am not sure. So much timing out I get it mixed up sometimes. I guess being full after eating so much is a bad behavior.

Time for the children to get in line. One boy who moves very slow is half way to the line. As I see him I see the other boy in timeout with a tear running down his face. The teacher starts to yell at the boy for not moving. I see the boys hand reaching towards the table. The teacher yells again at the boy in an angry voice to get in line. The boy freezes. The teacher grabs him and aggressively yanks him into the line. The boy was reaching for his lunchbox on the table that he had forgotten but did not know which to do, grab the lunch box or get in line. He had forgotten it. In his mind either way he broke a rule so he just froze. I guess its bad behavior to want to reach for your lunch box.

Several weeks ago a child was sick. He looked like Clay did in concert all pukish and his eyes were rolling around. At lunch he was told to eat. He stared at the food like Clay probably would have if you would have set food in front of him on stage those nights he was ill. When Clay was ill he received what most normal people receive, understanding and empathy. Clay also had to alter his performance. He sat on a stool and even on one night he could not continue to perform. Nobody went onstage and timed Clay out. The teacher said to me that if the kids parents sent them to school sick that the kids would pay. I am not kidding you he really said that. He said more but I cant remember it all. I have verbal processing disorder. I did try to stick up for the boy. It did not work. He said that lunchtime was for eating and the boy would eat. The boy did not eat he spent lunch in time out all pukey looking and he was wobbling like he was about to faint. He was really sick. I guess its bad behavior to be physically sick.


This happens so much I cant remember all the time outs. I only know I have never seen one for a "real" behavior. I have seen behaviors occur as a result of being timed out. What in the world is wrong with some people? If this is early intervention they can kiss my you know what.

Everyone can be happy that the kids are acting more normal now and that the kids aren't driving them nuts with their out of control autism. But at what price to these people. These children are human beings and they have feelings too.

Mom and dads please watch these schools to see what they do when you are not there. Its a fine line between behavior mod and abuse and I am seeing abuse.

The happiest I have ever seen these children was the day I went in when I first volunteered. I grabbed a ball and was throwing it around to play catch with 2 boys. I did the same I would with any child. The boys hand flapped and spun in circles like crazy. They also giggled and laughed and woooooosh a ball came flying my way and yes they interacted and the stimming did decrease some on its own as they began to focus more on the ball and each other. Now that is inclusion and assistance all in one and it was fun too. They were timed out. I got them in trouble. I did not know then that flapping was a bad behavior. I guess autism is a bad behavior. Grrrrrrrrrrr

I do not play with them like that anymore. It gets them in trouble. :(

I joined the Clay Nation with little social skills. I did not learn to interact with all of you via punishment. It was the opposite. I was never forced to act a certain way. I was accepted as I am and the lady who never joined in any group was so determined to belong with such a great group of people that I began to work daily at learning to socialize. I had no desire to do so before. I now socialize very well compared to before. You see the trick to helping people is to love them as they are. They will let you in and in the process they will learn from you. I will never be non-autistic but I am growing and learning more every day.

I have had behavior mod used on me in inappropriate ways and what they are creating in these children is worse than autism.

They are creating hate for others, pain, rejection, stress, loss of confidence, self hate. inability to make decisions, inability to express emotions due to fear of punishment, etc. which will lead to much, much more severe behaviors as these children grow up.


When we help children we have to think beyond the "quick fix" and see the whole picture. There are many autistic adults out there who are very mad at people for trying to make them normal. I am one of them. I can not give you "normal" but I can give you me.


The teacher called me and wants me to volunteer tomorrow I don't know how much more of this I can take. I cannot help these children. They hide this behind a bunch of high and mighty intervention talk. Its all about what's best for the children and ABA is the only proven method to work with autistic's to help them. Also when I asked her why they where punished for being sick she started talking about knowing them and they don't eat and force feeding is sometimes needed. It had nothing to do with either situation. In the one occasion the child was very sick. In the other occasion both boys had eaten more than I usually eat in one meal. That's what I mean when I say they hide it behind "needed interventions"

I would rather shoot myself than get the help these people offer. I have already tasted this kind of help and they can take it and shove it. All the good things in this program are worthless when you add the inappropriate treatments to it. I think the teachers need ABA. I would love to time the teacher out who always times the kids out for really stupid stuff.

So you think this is just happening in one ABA class. I don't think this is about "ABA" I experienced this many times in hospitals, group homes, mental health facilities. This is the normal way. This is how they help us disabled people of the world. This is also why very few of us ever improve. We usually decline. I am referring to all mental health issues and invisible disabilities such as ASD.



Trying to get a disabled person to "act" normal may be the biggest mistake being made within all systems.



Education on all disabilities and to causes of behaviors is the key. They do not try to help us live with our disability. They try to help us "act" normal and punish us in many different ways when we fail.

I see these children with more severe autism communicating in many different ways. I don't think "neurotypicals" can see it. I don't mean that to be rude but I really think they miss out on seeing what these children are expressing. Maybe it is because of my own autism and I see it from a different angle than someone without autism. They would never listen to me because they have a degree, etc.


I think living with autism for 41 years is a pretty good degree.



When are they going to start listening to the voices of the disabled. If they did they could learn so much that could help so many people. I know what those children need to grow. I know it in my blood. What I mean is I connect with them. We are the same they are just more severe that's all. I know how to get them to interact in good ways. I know it instinctually. I see the details that need to be seen to help them and every child comes with his own little details that makes up who he is. They are not objects to be programmed they are people. They are scared at this school. I see it in their eyes. When they cry, it is a scared and sad cry not a mad behavioral cry. I can tell.

I want you all to know that I am not against helping children. I wrote this blog for the exact opposite reason. I care about helping them more than you could ever imagine. I care about helping adults too and we need people to listen to us. I have been abused in the name of treatment and I know the damage it can do. I will never be cured of that damage. It will stay with me until the day I die. It's why I keep sharing with everyone so they learn. Not because I want pity. I am not an attention seeker. In fact I hate being the center of attention. Most autistic's do not like sticking out to much. I do not isolate because of my autism. I isolate because of others reactions to it. I am tired of trying to explain my weirdness to others everytime I leave the house. I am tired of people telling me about my defects everytime I leave my house. I was tired of it by the time I entered high school. That's when the isolation started.


I am also tired of trying to "hide" my autism from others. It is to much work. But at least people can say that I 'act" normal.


Do people think it will be any different for these other children when they are older. They will learn to "escape" what makes them uncomfortable or nervous, etc. If they start to talk. So what. It will not matter if they isolate from a world they fear will not like them after having been abused by it. They can sit at home and talk all day like I do about how much they hate it. (I need to be honest about myself so as to teach all of you. Even the bad stuff) Yes I want children to learn to talk if they can. If they learn to talk they need confidence and other skills too or they may still have very serious issues that prevent them from living a fulfilling life. We need to think of all the needs of these children not just how they present on the outside. We need to hear their feelings and listen. If they say they feel different they are probably telling you the truth. I have yet to meet a person with ASD online who says they feel "normal" Even the very high functioning individuals do not feel neurotypical.

But I will leave my isolation tomorrow to go hug those children and love them and if the jerk wants to abuse me too fine. I will suffer with them.

NOTE: Don't ask me to report this. I am disabled and no one will listen also I do not have the skills to take on the system. If I tried to talk and deal with the law, odds are they would laugh at me and blow it off and then the MELTDOWN would happen and off to the nut house I would go because I would be super upset that they did not listen. Not because of me but because I would know that the abuse would go on and nothing would change except my roomie would get a vacation from my yakking as I sit in a nut ward being behavior modded to death.

It takes the help of non-disabled people to deal with these situations. At least for now. One day when the disabled of the world are heard this may not be needed but for now it is.


So now I place it in your hands.


There are disabled people near you and they need you. Young and old. Physically disabled, neurologically disabled and yes the mentally disabled need you more than you could ever imagine they are the most hated and misunderstood of all in our society.

8:56 AM  
Blogger Estee Klar-Wolfond said...

Another Autism Mom:

Here are the quotes from Catherine Maurice's "Behavioural Intervention for Young People With Autism," in the Chapter "Why This Manual?":

"Clearly, ABA is not a panacea. Anyone who looks objectively at these studies will understand that even under the very best, most professionally run programs, the majority of children still do not make it to normalcy, recovery or unsupported inclusion in normal schools..."

When New Haven came to my home here in Toronto, they said that most kids will become indisinguishable from their peers and that was their goal. The "look at me" program was employed because in ABA school of thought, that is required for "attending" and if a child can't "attend," then they can't learn.

Lovaas goes on to talk of autism as pathology: "Catherine Maurice presents the clearest description that I have read of the abnormal development of autistic children..." (From Afterword in Let Me Hear Your Voice).

The entire premise under which this therapy was developed and expedited is unethical now that we understand autism better and we have autistic adults and others with disabilities who have also undergone behavioural approaches in their lives.

When the premise comes from wanting your child to learn and respond in a typical way, then we have to now question the goals and objectives. However, if we try to appreciate and operate and teach with the atypical response and autistic learning style, we can build the bridges without effecting personhoods.

Finally, there will always run the risk of a low quality program if we continue to view autistic people as requiring one type of intervention or methodology that has this view that autistics should be normal. Catherine Maurice acknowledged the low probability of "normalcy," and she is quite correct. What does this tell us about the nature of autism. How does it guide us in appreciating autistic people and helping them be the best they can be by providing assistance under a different kind of premise -- one that accepts and appreciates people of all disabilities as having something contribute.

Maurice says: "...the 'perfect' treatment -- one that will provide the possibility of a normal life for all children and their families -- has yet to be developed." (also from Why This Manual")

You see? Everywhere, the goal is the normal life. It's an impossible comparison for people who will never be normal. Who will always be different. And I don't see anything wrong with being different.


As for your son who has learned, we actually know that responding and learning is different. He may understand hot and cold, but maybe not be able to communicate it "in our language."

So, I am with every parent who wants opportunities for their children and who are all figuring out how to equip their children. But we also need to reciprocate by learning and understanding autism better, and not by comparing it to a "norm," or using a medical view. This is holding us back to real progress.

We have to move on with the tools we have, but begin to redefine autism with an ethical definition, and with autistic people who live their lives with autism. ABA has been so overgeneralized, that we indeed do have instances where autistic people ARE being abused because of it (as noted by the person above).

9:43 AM  
Blogger Estee Klar-Wolfond said...

I forgot to mention that the "look at me" program, is the most inhumane program for autistic individuals, because we know that to look is physically painful for autistics. Adam looks at me on his own terms. And he learns.

9:44 AM  
Anonymous Anonymous said...

Estee. I wanted to share that the teacher of this school was proud that the children sat well to be read to. To perfect. They have to sit still and are told to sit like little pretzels. If they move their legs they have to sit like told.

They were taught to sit like this by being place in a chair in the corner. They then took a desk and put it in front of them and forced them to stay in the corner held by the desk til they finally gave in and now they sit to be read to. She told me this.

I think that is not right and I dont see how they think that is ok.

I asked her once why they had meltdowns to understand mine better. I wanted her help. She said the meltdowns were always for attention or they did not want to do their work. I knew then that I knew more of my autism than she does. She does not understand that sensory overload, etc can lead to meltdowns. They never talk of sensory processing issues at all.


To be honest. My meltdowns are worse than the kids. I am a head banger and self hitter when overstimulated. What helped me most to overcome this although it still occurs but not as often was learning to back off on things when overwhelmed and I have a weighted vest I wear too when going into social settings.

Behavior mod never helped me I always declined. Meds. they told my parents to give me always caused an increase in behavior. I found out from reading Temple Grandin,s book "Thinking In Pictures" that some autistics do ok on very small doses of ONE med. If on a normal dose they may have a have a bad reaction. Small dose = good response. Normal dose - adverse response. I was placed on up to 5 or more meds at once and always on HIGHER than normal doses. Now I know why I meltdowned so bad. I would sit and headbang all day til my eyes were swollen shut and my face black and blue.

They said it was non-compliance and I hate them all for not seeing what was really wrong. My family threw out those drugs and I have never been that bad since.

They grab those kids hands really rough too all the time like you describe how the lady grabbed your sons hands.

10:03 AM  
Anonymous kyra said...

i love letting the sand fall through my fingers. it's a terrifically interesting thing to see, to feel, and to meditate on, very fascinating and calming and centering, on all levels. i don't think it's only the territory of the autistic. and i think pulling a child away from that comes from fear. the child is doing nothing wrong.

i think good teachers are good teachers. they can come from every background and discipline. it's a gift.

my issue with behaviorists is that they are often overly preoccupied with extinguishing behaviors that they judge, out of fear, out of misunderstanding, out of ignorance. all behavior is meaningful and therefore, communication. it takes confidence and experience and sensitivity to be willing to LISTEN to what is being said by what is being done. i'm all for listening. pulling a child away aggressively like that ex-therapist did with adam is akin to telling him to shut up and what an odd way to draw someone out, to get to know them so that deeper understandings and learnings may bloom.

10:06 PM  
Blogger Ryn Tales said...

I just found your blog through special education law blog (love those guys). All through your post I was so agreeing with you and have experienced similar things with therapists being physically hard on my daughter from their behaviorist approach. She does not have autism but is non verbal and has cerebral palsy and gets really frustrated when people don't understand her. She calms down just like Adam when I say, I see you want this or that. Your post was really validating for me and how I parent my daughter. Also, it gave me some graceful examples of how to deal with teacher/therapists types who take a different approach.

I admire you cool head in those situations. when I witnessed a therapist meanly forcing Ellie to color by jerking her arm back and forth with a frown on her face I was so stunned I didn't say anything for a second until I finally blurted out STOP!

Great blog. Thanks for this post. Adam is a lucky kid!
Kathryn

7:15 AM  
Blogger A Bishops wife said...

I am looking for the "Right way to do things"

I have two on the spectrum and feel like I know nothing. How do all of you get so smart about everything?

I am a mommy in meltdown right now.
It is getting to the point that I hate myself because it seems I do not know or do enough, of what ever it is I am suppose to do in the way I am suppose to do it. I have never felt more inadaquate in my life.

My kids are the best in the world and I love them so much. How do I do all of this correctly and perfectly.

8:17 AM  
Anonymous Rachel said...

Personally, I have an "ABA" background. And I'm glad to see parents and others talking about the good parts of autism. I see the children I work with as beautiful intelligent beings that have a lot to teach the rest of us. We can learn a certain innocence. And we can learn to be flexible, people see autism as being rigid, but our society's unacceptance of autism is equally rigid.

ABA has gotten a bad rep. Behaviorists didn't necessarily try to steal rewards and punishments, they merely uncovered the workings of behavior. And all therapies seek to elicit some behaviors and keep them, while decreasing others. This is reinforcement and punishment. The difference is in what behaviors are looked at and how they are brought about.

I love the comment about putting more emotion and caring into the work. Every behavior has a meaning (like your son's crying for his video because he was tired). I teach all my therapists, and the parents I work with, that everything the child does is communication, and that the communication, the purpose of the behavior is always valid, and as the others in the environment, we have to acknowledge the validity of what they are doing (even if we don't like the behavior).

Anyway, I have rambled on enough. I'm glad to see discussion like this and I only wish our society at large would listen. I get so frustrating with CAN and Autism Speaks, portraying autism as nothing but devastation and something to be wiped out. Thank you for the blog!

3:23 AM  
Blogger Nicky Palmer said...

I agree that we do need to critically examine what we are doing to children on the spectrum. What is the purpose of our interventions and what are the outcomes of these interventions? Respecting and building trust need to be central to therapeutic work with any person. I imagine your sensitivity has really assisted you to build a wonderful connection with your child.
Nicky Palmer M.S RDI Consultant
www.asdhelp.com

7:45 PM  

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