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[Lecka]

I have been interested in her book, too.  I am sure I would like it.  

 

I think as someone who does ABA -- I don't like how it used to be done, I don't like abuses that occurred, I don't like negative conceptualizations of autism, that are all part of (as I understand it) the history of ABA and how it was developed and how it came to be something that is available today for me to learn about and therapists to use with my son.  

 

She is someone who is part of the early history of ABA and without her -- maybe the field would not be as far along as it is today.

 

I think that about Temple Grandin and her mother, too -- without them, a lot would be lost from our world and understanding.  

 

Separately -- as someone who has read the book and not just the Amazon review you highlighted, there is a part where she talks about how her son was crying a lot and she did not "do extinction" because she didn't think it was the right thing to do.  She did not do what a behaviorist would do, she chose to do what a parent would do.  So I do not think it is fair to say she "replaced sympathy with discipline" as the review says.  I do not think that is an accurate characterization.  It is true to some extent, but in the section about her son she tells why she went with her mom instinct to comfort her son for that.  So -- it may not be as bad as you think, in that way.  

 

I am also asking myself a little, if this is b/c of how my son did when he started with turn-taking games, aka screaming and hitting when he had to let someone else have a turn, if that colors my impressions of Temple Grandin.  She talks about turn-taking games, and how the nanny played Candyland with her.  For my son -- to have to take turns, to not be allowed to just play with the plastic figurines or the cards, to not be able to slide his people wherever he wanted, etc, it was all very difficult.  Not some gentle, idealistic thing, at all.  I always picture Temple as doing some screaming when she does not want to go along with the nanny -- it is just what my mental image fills in, b/c I picture her like my son.  I also imagine she had to be sitting in a chair or sitting on the floor -- not totally still or anything, but not wandering away whenever she wanted or never even focusing on the game.  

 

I feel like -- it is very similar to me in my own mind.  

 

And I am sure Catherine Maurice would not have started with the sitting-in-a-chair thing if she had known of any other way to do it.  That is what I think the main thing is, where I cannot imagine it, I think it is extremely bad.  There are better ways to get kids to the table now, to sit, to be engaged.  I think Temple Grandin's mother may have figured that out on her own, but for myself, I never figured it out on my own.  I couldn't get my son to sit in a chair, to sit still, to focus on anything, etc, except very rarely, before he started pre-school.  

 

But anyway, I think my son is like her younger son.  It is not an easy situation to not be able to have your child pay attention to you.  With what she had at the time, I don't know what she could have done differently.  If your kids were never this way and would never have needed it -- I think it might seem like just pure torture.  But I think it is pretty bad, but I also can see more of why you do something when you don't know what else to do, and are trying other things (she totally tried holding therapy -- which is very much a "sympathy over discipline" kind of thing, and might be part of what the review is getting at -- the book does compare and contrast to some extent... but it does not mean there is no sympathy -- to some extent it just means the solution that worked was not sympathy).  I hate that she did it, but I think it worked and when nothing else works -- that matters.  

 

She could have kept on doing holding therapy -- but none of the other kids in holding therapy were making any progress.  Just her daughter, and she accidentally let her daughter be a poster child for holding therapy.  

 

Btw this is another reason I can see her staying anonymous.  She got taken advantage of as part of a BBC documentary and pretty badly burned.  And, I think writing the book was partly a need for her to come out and speak up that the way she was portrayed in the documentary were not true.  But also, I think she did not want to have much to do with it anymore, she wants to put it behind her.  

 

I also, while I despise the "cure" language, in her I can see she is fighting against the psychoanalysis, where there is a "complete" child hidden behind a "wall" and just can't get out until the proper psychoanalysis occurs.  She is fighting for the medical model, for there being different wiring in the brain.  I am for the medical model, and the different wiring in the brain.  Today that does not go along with saying "oh and it can be cured."  But within that context -- it makes a little bit of sense.  So that I can see some reasons why people then, coming up against the psychoanalysis thing, might be that way.  But I also think it is sad and such a waste.  But in a very small way maybe it is like a hiccup getting from Point A to Point B, and I like Point B a lot more than I like Point A.  But still -- I think it is sad and damaging for the people who did think that way.  

 

 

 

 

 

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[Lecka]

Thanks for the video!!!!!

 

Oh, no, the video-taped bad therapist is so horrible.  So, so horrible.  It makes me so sad.  The first woman is good.  

 

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[mingmama]

I really like the Social Thinking line of curriculum - it addresses broader issues than conversation, but works on a lot of the skills necessary for social interaction of any kind.  In our area there are a variety of social skills groups available which use this curriculum.  My 6yo attends a social skills group using this approach, and it has been really fantastic!

 

"Thinking About You, Thinking About Me" is kind of the general overview. 

 

http://www.socialthinking.com/books-products/products-by-age-range/k-2nd-grade

[mingmama]

To include an example of an exercise they use in the Social Thinking program:

 

They ask kids something along the lines of  "How much do you like...cheese pizza?" on a scale from 1 to 5.

 

Going around the room, some kids like cheese pizza a 5.  Some like it a 4.  Some like it a 1 (don't like it at all).

 

For my son, it was a totally new and freaky concept that, while he loves cheese pizza (a 5), some kids don't like it (a 1).  The social skills group will then continue to work on perspective taking and gathering information about other people in order to predict likes and dislikes...which is an important skill to have for conversation!

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[mingmama]

Yes, all this was done in a social skills group setting.  There are four kids in the group, age ranging from 5-7.  Much of what they are working on depends on group game playing, and I don't think you could do it one on one.  Two siblings might work, though! 

 

I'm not sure which book in their product line would lend itself best to a home group type curriculum.  I have "Thinking About You, Thinking About Me," but it isn't a curriculum - more of an overview of the method.  I also have "You are a Social Detective!" which is a simple book with lots of visual elements and cartoons, kind of an introduction to social thinking.  What they are working on in the social skills group is much more comprehensive.

 

Is that $1,800 for the entire school year/36 weeks of classes?  If so, that's not too bad a deal!  Our group costs $85 per hour session.  We're signed up with a charter school independent study program, which picks up the tab.

 

 

[Lecka]

That sounds like a great group!

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[Lecka]

For the BBC thing.... she did not start out convinced that she should use ABA.  She listened to people who told her maybe she was just a bad parent, and in that vein she tried holding therapy.  For a while she believed holding therapy was working.  Partly, because the director held out promises to her of other children who had made progress.  Later on she became disenchanted and believed that all her daughter's gains were from ABA.  

 

But, in the meantime, she agreed to be part of a documentary, later aired on the BBC (so I am calling it a BBC documentary, but maybe it was not made by the BBC), that implied that her daughter's progress was due to holding therapy.  In her comments she talked about ABA, too, but her comments were not included in that way.  In the program it was presented like her daughter's progress was a result of holding therapy.

 

Then -- she felt really guilty, like she was misleading parents.  She looked into hiring lawyers (again she is a wealthy New Yorker), but decided it would detract too much from her family if she pursued it.  

 

So, I think her book is partly an attempt to keep people from trying holding therapy like she had, and let them know what did work with her daughter, and what led to her daughter's progress.

 

Then for context -- I think a lot of it is that in reading an excerpt, her voice would seem to be directed towards the reader.  Why would the reader deserve to be spoken to that way?  What has the reader done?  Nothing.

 

But, she is not writing, in my opinion, to air her grievances or exercise a public vendetta against people who have wronged her.  If, that is how it comes across.  

 

Instead, she is writing to an audience who she expects are having the same conversations with doctors.  Who are being told there is no hope for their kids.  Who are being told that ABA is not a good treatment and they shouldn't pursue it.  She is sharing her response, and it is intended to help other moms to advocate for their kids and not listen to doctors who tell them their children will never make any progress.  

 

I find her blunt, but it is a good blunt to me.  She needs to be blunt.  Blunt and harsh are pretty similar, just if you think it is justified to speak that way.  

 

When I read the views of people who are critical of her and who are supposed to be guiding her to appropriate treatment and support, and they are NOT guiding her to that, I think that is a time to be blunt in explaining her reasoning.  B/c I think it is appropriate for her to convince her audience that it is worth it to believe their children can make progress and to try the controversial treatment of ABA.   

 

I think it is an appropriate tone for someone who is trying to convince her audience that they don't have to accept the doom and gloom they may hear from experts they have taken their children to see.  

 

I also am not a fan of the medical model, with the implication that there is something broken.  But, it is an improvement over the psychoanalysis thing.  It was a big deal that she thought it was a problem based in a brain difference, and not something where there was no brain difference, the child was just choosing not to communicate because of the mean parents.  It is a step in the right direction to me.  It is also something where a lot of people did not agree with her.  To me -- I think it is acceptable for her to be blunt in explaining her reasoning in that area, for why her kids need to be taught things, instead of assuming they already know them and are just waiting for the right psychoanalyst to reach them and establish trust with them.  

 

If I was having that conversation with someone, I might be blunt.  But I would be blunt in advocating for my child, and for HOPING that maybe other children could be helped if you shared the information with other parents.  

 

But that is where -- if you are only reading her quotes without the context of the situation in her town, not just HER situation she is complaining about, but that exists for other parents like her -- such that she is trying to share information to help other parents, not just vent against people she didn't like.  

 

So I think out of context it might seem like just venting/complaining, but in context, I think it is a road map to help other parents like her who are trying to figure out the best thing to do with their kids.  

 

I also think she is a strong role model in her outspokenness.... b/c she is clearly a woman who respects authority and wants to go along with authority.  And, she writes to an audience that may be that way also.  But she has found that in this situation the voice of authority did not lead her in the right direction.  And, she feels some disappointment and even bitterness about that.  I can understand that.  But -- she does not wallow in my opinion, she does what she thinks is best.  But at the same time -- it is difficult for her b/c she would rather go along with "what everyone knows."  That is something that means a lot to me, also.  In that sense I think she is a great role model.  And -- I think that it is great when there is no need to be blunt or disagreeable, but sometimes the need is there and it becomes necessary.  Even though it is not polite or maybe socially acceptable.  I think her model of someone who is fighting for her kids against a backdrop of people who do not think she should be fighting for her kids, is one that would make sense to others who are in a situation where other people are acting like "there is no big deal, why is the mom making such a big deal, why does the mom want to fight for more, why isn't this good enough" as well as being in a situation where there is a miasma of suspicion that everything is the mom's fault, there is no difference with the child, it is just bad parenting, the mom has some flaw that is causing the child's problems.  B/c she struggles (which is a downer) but she also does keep going and come to trust herself and trust that she is a good parent and that her kids have a brain-based difference and that she wants to help them to learn and make progress.  So in that sense it is uplifting to me -- there is a lot of downer on the way to that point and a lot of downer still, but she is a good role model to me for that reason, and it helps that she is honest about her low points, b/c I have low points to, and I have wondered if other people have been right who say "don't worry" or hint that it is something that is really probably a result of my parenting.  

 

She is really villified in ways for choosing ABA -- that is a lot of the context.  And, villified by people who believe it is a fault in her own parenting that leads to autism.  And -- when women are wondering if maybe those people are right -- I think it is good for there to be a voice that is blunt in responding to those critics.  B/c in her audience there are women who are wondering who they should listen to and who are believing the worst.  

 

 

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[Crimson Wife]

I actually ended up tracking down the source of the controversy and it appears to be this article:

 

http://www.sentex.net/~nexus23/naa_aba.html

I had to stop reading it because the author keeps using "autistic" as a noun. My daughter is not "an autistic" but rather a person with autism. Autism is something she HAS, not something she IS.

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[Lecka]

I am subscribed to Diary of a Mom on facebook, and she has started using autistic.  She has a post about it.

 

I am unsure of my opinion on the usage.  But, I think there are good points on both sides.  I won't quit reading something because it uses the word autistic, though.  

 

I am also in favor of ethics, and I agree there have been ethical lapses in the past.  I think every person deserves ethical treatment.  

 

I think the whole "cancer" thing is a poor argument.  When I have heard this argument, it is presented as a way to get insurance coverage for ABA.  The reason is, that here insurance companies do not have to pay for "educational" treatment."  So then there used to be a push to classify autism as a "medical" condition so that insurance would cover it.  I think this is not really how the debate is anymore.

 

But I do not criticize a person so much, for making a comparison with the intent of helping parents to receive therapy services for their children.

 

But then the other side -- I think it is a bad thing to say, and offensive.  

 

But I think it is something where, again, it is more understandable if there is that bit of context, for "why" it would make sense to make that comparison.

 

It is not something where I think "oh, that is so awful, it negates anything else that person might say, and any experience that person might share."  I think it is not the best thing to say, and that the author of the article has a good point.  But I also think the author of the article does not go into all the context.  

 

But I also think there is a good point, that the comparison just should not have been made, no matter the context.

 

But I think it is one thing to say "autism is like cancer -- a medical condition requiring treatment -- and therefore insurance should pay for its treatment" and another thing to say "autism is like cancer -- you know, this horrible disease that kills you slowly from the inside."  And I think it is true, that saying the first thing partly implies the second thing.  But saying the first thing is also not equivalent to saying the second thing, in my opinion.  

 

But it is fine, don't read her book -- it is not a must-read or anything.  But since I have read her book -- I can respond to some things.  

[Lecka]

http://adiaryofamom.wordpress.com/2012/07/07/person-first/

 

This is a post where this mother explains why she uses autistic and not with autism.  

 

I think it is a good explanation for why some people choose that word usage, right now.  

 

For an old book -- I think that is just the word people used at the time, I doubt Mrs. Maurice made any kind of informed choice in her word usage.  

 

The author of the article may have been making a kind-of intentional political statement with her use of the word "autistic," it is possible.  If I knew/read more about her I would probably have an opinion on whether she is making a point or not.  The point she might be making is -- autistic is a proud identity, and/or it is a full part of a person not something separate that can be removed.  As far as I know -- those are the connotations I might have, at least, if I read/knew more about this person I would start to form a judgment this way.  

 

Also, the purpose of the article, to me, is to criticize ABA.  Mrs. Maurice is brought into it because she is in favor of ABA.  

 

I am sorry that ABA is part of the whole construct of "people with autism are broken/damaged."  I don't think that is necessary.  I don't see it that way.  But I think this article is equating ABA with that viewpoint, and against ABA as part of being against that viewpoint.

 

And so -- that is why Mrs. Maurice is being brought into it -- as a supporter of ABA and (in my mind -- unfortunately -- b/c of the context I see) the broken/damaged model (which -- I think this is a problem with the "medical model" but is that a reason to be against ABA?).  

 

I do not get the broken/damaged vibe in the book -- or if I do, it is something I overlook as using language common at the time, that would not be used today.  

 

I can also see myself, at the time, in making an argument for insurance coverage, comparing autism to cancer as something insurance should cover.  And then -- realizing that was a really poor analogy.  B/c -- I know about myself I am a good person -- I think Mrs. Maurice is a good person and deserving of the benefit of the doubt.  

 

If I had additional information about her making me think she was a bad person, she would not get the benefit of the doubt from me on this one.  

 

I can see others not wanting to give her the benefit of the doubt, but I do give it.  I am not as offended by the analogy b/c with the context I think it was made in good faith -- but I also see why it is found to be offensive and unacceptable.  

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[Lecka]

I think it does sound really bad out of context, my heart stopped when I saw she compared autism to AIDS (in your post).  It seems like it is going to be a really negative comparison, and I was thinking "oh no, I don't remember this part."  I am glad it makes sense with the context.  

 

Thanks for looking into it more, I appreciate it very much.  

 

 

[Crimson Wife]

Crimson Wife, you do realize that the term autistic persons, autistic children etc. is all over Let Me Hear Your Voice, also!

 

I don't know that it really makes a difference quite honestly! I am pretty certain I have read Temple Grandin say she is autistic. Also, you say someone is a diabetic, yet diabetes is something that someone has.

I have no problem with the term "autistic" being used as an adjective. Sometimes I use it myself as a shorthand. I just have a problem with it being used as a noun. Someone with autism is autistic but not "an autistic". Just like I might describe my daughter as disabled but never as "a disabled". She is a person, not her disability.

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[Lecka]

Okay, that makes sense.

 

I think there are many unethical practices that happen and have happened, related to ABA.  I think she is right.  I just don't think this means that ABA is inherently a flawed therapy and that its goals are inherently flawed.  

 

She is right about the history of aversives, I think.  I also think that if she mentions (I don't know if she does) that at the same time Lovaas was doing anti-gay experiments, and did therapy on a little boy to make him not be effeminate, and this boy commited suicide as an adult.  

 

I think it is like -- yeah, there is a deeply flawed history here.  Lovaas is not a saint.  I am grateful that he thought to try behavior methods with children with autism, though.  

 

BUT am I an evil person, out to destroy my child, b/c I am using a therapy that has this flawed history and abuses associated with it?  And I say, no I am not.  But if someone wants to look at all these bad things and then let that be the whole picture, then that is what they will do.  

 

But yeah -- the Feminine Boy Project happened, I do not attempt to defend it.  Aversives have been used, I do not attempt to defend it.  

 

She is setting the terms of her argument, I think, it is a hard kind of thing to rebut.  

 

I read the beginning of a book about ethics for BCBAs.  It was extremely disturbing and I had to quit reading it.  All about abuses that had occurred with the use of behavior modification in the past.  Really pretty disturbing stuff.  

 

But that does not mean I am doing anything like that.  Or my son's therapists or his school.  

 

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