What I Think About ABA & “Recovery”

Applied Behavior Analysis—ABA—has been the core of my son Charlie‘s education ever since we started a home program for him in September 1999 in our living room in St. Paul, Minnesota, with a young consultant and lead therapist, a speech therapist in her first year of graduate school, and four college students (none of whom had any previous experience working with autistic children). The classroom in which Charlie has been thriving follows ABA principles closely, with speech therapy, OT, lots of sensory reinforcement, lots of talking, and P.E. carefully integrated. And so I was curious to read the “hundreds of emails” that Autism Speaks received in response to its query about “‘What Do You Think’ About ABA Therapy?”.

This one from Ann Naffier stood out.

ABA has worked well for my child, but not in the way I thought it would. ABA, when it fails to “recover” a child, can lead to a second round of shattered hopes and dreams. However, once I got over the shattering, I was able to recognize the good that our ABA program had done. No, my child doesn’t converse spontaneously, but he is very good at making his needs and desires known (“I want Star Trek, please!”) I do not believe this would have happened had he not had the ingenious and continuous practice offered by his ABA program.

As I wrote on Autismland on June 6, 2006, in Recovering from Recovery: Autism Now (#346):

Like too many autism parents, I have equated “not recovering Charlie from autism” as a sign of my failure to do enough to help him.

And yet—-the notion of “recovery from autism” always rang a bit false and flat in my ears until it simply sounded—as autism mother Cammie McGovern wrote today in Autism’s Parent Trap—like some mythological concept. Like some autism fiction and here before me, pulling on his pajamas with shower water dripping off his legs (“This is how you dry off, Cholly”; “Dwwy offf! Towel on!”) or being gently reminded not to say “I want ginger” when he really wants to eat more frozen peas and carrots, here before me is my lovely boy, who needs my attention and who needs to be taught where he is so that he can move on and have that “good life.”

Jim and I wake up every day with one goal in mind, to maximize our and others’ efforts to help Charlie learn as much as he can, and to know that just trying—just showing us that he is trying—is more than enough.

……….

Living in Autismland has come to mean not an endless recovery effort, but simply endless efforts to teach Charlie, and endless good times with our sweet, big-hearted boy.

I reiterate: Living with Charlie has come to mean not an endless recovery effort, but simply endless efforts to teach him, however long it takes to learn any particular skill (like reading). A life lived with Charlie can’t be long enough.

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    • Jez Rourke

      My daughter has made great strides with ABA therapy as well. I mean I don’t think there’s any question of the effectiveness of it for enabling autistic children to learn. Every single thing she knows, she learned from ABA. This is fact. Except for the things that seem to be her gifts. She spelled words with refrigerator magnets long before ABA therapy. She plays the piano almost in spite of ABA therapy. She taught herself to read without the use of ABA therapy. Adding and subtracting. She was obsessed with numbers and sequences of numbers before ABA.

      Having said that, she had no language before ABA, no eye contact, no social skills, absolutely ignored everyone and everything. This is really amazing though. My mother has a small dog. She babysat for Jodi for the first two years of her life. She started a not so good ABA home program in my mother’s house where she spent the day. This dog never meant a thing to her. After ABA therapy, when we go to my mother’s house she’s afraid of the dog. It’s weird. It’s almost like before ABA that dog didn’t even exist. I know this is subjective, but prior to ABA she seemed much less engaged in the world. Much less is an understatement. She seemed like she wasn’t even there and when something was thrust upon her like someone saying hello up close that she couldn’t avoid, she’d cover her ears.

      ABA changed all those things in 1 year. When I think about “recovery” in a realistic way I think that she thinks differently than I do. I see how her mind works, like pure logic. In my more analytical and less emotional moments, I’m dazzled by the pure innocent logic of her whole being. And I do question when I think about recovery is it possible to change who a person is? She is who she is which is like the greatest thing in the world. I have trouble believing that anything can really change the core of how a person thinks. So to me, I hope for recovery but I like her more than anyone I know because she is different, because her thinking is more efficient than my own, because she is so interesting and funny, because she is autistic, not in spite of it.

      I don’t know. Is it possible to change the way a person thinks? I have been told by more than one person that I “think funny.” When I ask how I get the same answer. You think in a circle. I’ve thought about it (in a circle) and realized it’s obviously true but I never would have described it that way. I assume other people think in a linear way. I don’t think I can change the way I think. Maybe with a lot of therapy I could learn to think in a more linear efficent way instead of ending up right where I started. But I do think this circular thinking will always be more comfortable and the way that I think when I’m not forcing myself to think unlike myself.

      I know people who speak many languages have told me that they think in their first language.

      So I wonder that about autism. Recovery I think would entail changing the way a person thinks and I do wonder if that’s possible. When I see how strong my daughter is, how hard she works, how stubborn she is, how happy some things make her I see that way she thinks is what makes her “herself.” It’s something I wonder about all the time, like is she going to one day start thinking differently? To me that seems almost impossible. So if that’s how recovery is defined, I don’t see it happening.

      But if recovery is defined as acquiring skills that I never imagined she’d have, she’s recovering nicely. I can’t think anymore.

    • http://autismcards.com Carol

      Nice blog! References to “recovery” & “interventions” have always made me cringe, but I’ve never been able to articulate “why” as well as you have here.

    • Jenni

      I am right there with you guys!!! I have been and am right where you are!!!!!! Wow, it’s great to feel like you aren’t alone.
      “A life lived with Charlie can’t be long enough.” I know exactly what you mean, Kristina!!!! When Mike wakes up in the morning, the sun rises in my house!
      Hugs, Jenni

    • http://www.autismvox.com Kristina Chew, PhD

      There was a time when, to be very honest, we thought that Charlie was “done” with ABA and that he needed something “less structured” and was ready for more “mainstream” teaching. He was 6. For one year, we did no home therapy and tried to do gymnastics classes with typical kids and those kinds of things. I can’t say for sure if it was the lack of ABA, but this turns out to have been the period when Charlie started to have a lot of behavior problems and also to get completely stuck in his academic learning. We started him on some home sessions again when he was 7 but without a consultant visiting regularly, and with his situation at school becomine less and less appropriate, Charlie’s behavior problems worsened—-he had severe tantrums at school and home and his SIBs increased to several times a day.

      We began home ABA, with the Lovaas agency, when he was 8 1/2. I had been feeling critical of ABA when we stopped when he was 6. I wish we had not stopped, but that’s hindsight. It has taken a good year and a half to help Charlie through the behaviors and to begin to teach him where we left out when he was 6, with reading and other skills.

      I did feel we “needed a break” when we stopped doing the home ABA. In retrospect, I realize it was not the ABA that was not working; it was Charlie getting older and needing a different approach and also a new consultant who could see things differently.

    • Another Voice

      Kristina, thanks for posting this. And thank you Jez Rourke for sharing your comments. When I hear the word autism I think of the drills, the small victories, the love to push on after the days without a victory, the extra celebrations after the days of multiple victories.

      This to me is reality. Not the ranting of people who were ill prepared to be parents in the first place. Not some newspaper reporter twisting numbers to sell a book.

      Each day the children say “here I am”. Each day the parents respond by making today better than yesterday. That, in my book, is the reality of autism.

    • http://www.autismvox.com Kristina Chew, PhD

      Jez, Carol, Jenni, Another Voice: thank you—ABA has meant a lot to our family, not so much for the “science” of it or for anything about “recovery”—-it has just been a good way to teach Charlie by looking carefully at who he is.

    • http://autismcrisis.blogspot.com/ Michelle Dawson

      An autistic who teaches herself (it looks like, very early) to read and spell–has “no language” and totally ignores everything?

      And she doesn’t just teach herself to read and spell, but plays the piano (in spite of ABA–because ABA won’t allow her to learn how she learns well), teaches herself to add and subtract, etc?

      And this girl is oblivious? And since when does written language mean “no language”? And how does a girl who is totally oblivious (according to the above, “She seemed like she wasn’t even there”–the usual description of us as not really existing because we orient atypically to stimuli) teach herself how to read and spell, etc.?

      Even when autistics demonstrate clearly that there are ways in which we learn extraordinarily well (including learning language), because the way we learn is atypical, this is written off as “she wasn’t even there” and “she had no language before ABA”. Therefore, she has to be completely altered by ABA programs, in order to persuade her entourage that she is “there” and that she can learn.

      My view is that ABA “works” when autistic children are totally written off (“not there”, oblivious, “no language”, etc). In this case, at least ABA will demonstrate to parents that their child exists and can learn–by giving the child “right” non-autistic behaviours, and eliminating “wrong” autistic behaviours. This is even though the “wrong” autistic behaviours previously resulted in extraordinarly learning by this child. This is even though the child learns with much greater difficulty in ABA, and in a much more limited way, than she would if provided with the materials and opportunities to learn how she has amply demonstrated she learns best. But even though this use of ABA “works” (see above–after ABA, the parents notice that the child is present and sentient, and then they credit all progress to ABA), this is fundamentally unethical. A child should not be put in a program to compromise her learning (how she learned to read, spell, do arithmetic, play the piano, etc.) in order to deal with parents who, against all evidence, decide she is oblivious because she is not like them.

    • http://www.autismvox.com Kristina Chew, PhD

      Thanks, Michelle. I really appreciate you critiques of ABA on your blog and take them into consideration as we continually try to discern the best educational options for Charlie.

    • Another Voice

      M. Dawson,

      There are many parents who utilize ABA, not because they feel their children are oblivious or have written them off in any way. I do not look at ABA as the sole activity to be employed. However, you are sadly mistaken to imply that it is a course of action taken after giving up.

    • Jez Rourke

      Hi Michelle,

      Thanks for your comments. I appreciate them. I never said Jodi was “oblivious,” I said she ignored everyone and everything. If she was oblivious she’d have no need to purposely shut everythinig out. Clearly she has sensory issues and more than likely was overengaged in everything around her. Yes it is true. Jodi is an amazingly gifted child. Absolutely brilliant and make no mistake I am the biggest fan of who she is right now, yesterday, tomorrow.

      I have no issue with the fact that she’s not like me. She’s better than I am in almost every way. Braver, stronger, smarter, more talented, and much better looking. And I have no problem meeting her in her comfort zone and playing with her the way she likes to play and writing words in chalk on concrete while she spells them for me. I love this child more than life itself. I don’t need her to be “like” me. I embrace her differences.

      I also appreciate the fact that in this world, the one she has to live, there are skills that will make her more comfortable and better able to navigate her way through the educational system and through her life. It would be negligent of me as a parent not to fight to give her every opportunity to learn skills which will help her function in the world she lives, just as it would be negligent of me not to nuture who she came to me as: a non-verbal, spelling, reading, piano playing, scientist. All of those things are who she is. And I celebrate them all equally. Appreciating her difference AND enabling new learning at the same are not mutually exclusive.

      And I do appreciate your insight. Your comments are thought provoking and appreciated.

    • http://autismcrisis.blogspot.com/ Michelle Dawson

      I was directly responding to what was written. E.g., “absolutely ignored everyone and everything” and “prior to ABA she seemed much less engaged in the world. Much less is an understatement. She seemed like she wasn’t even there” and “Every single thing she knows, she learned from ABA.”

      Those are really common descriptions of autistic people, by parents (in the media, in books) and also sometimes in the scientific literature, by various kinds of scientists (I’ve now blogged about this), some of whom directly quote parents like Catherine Maurice.

      There’s also the further assumption that if you don’t have eye contact, if you don’t orient typically to stimuli, if you don’t learn the right things the right way and in the right order, then you are doomed.

      It’s interesting that we don’t put non-autistic kids who can’t do what Jez Rourke’s wonderful daughter can do in ABA programs (to give them every opportunity, etc). This is just to point out the obvious: it is possible to create a world which only values one kind of person and one set of abilities. And this is what’s happened.

    • http://autismcrisis.blogspot.com/ Michelle Dawson

      I forgot to add, re “Appreciating her difference AND enabling new learning at the same are not mutually exclusive.”

      “New learning” should not be prevented by assuming that an autistic can only learn (“Every single thing she knows”) in an ABA program.

      That assumption is so clearly wrong when an autistic child is able, before she starts ABA, to learn–on her own–to read, spell, do math, etc.

      I’m (scientifically) interested in how she accomplished this (as opposed to denying that this is learning, as happens in the ABA literature), so that this kind of characteristically autistic learning can be encouraged (e.g., by providing opportunities and materials) as much as possible. And as I wrote above, this kind of exuberant autistic learning is associated with those “wrong” autistic behaviours that are extinguished in ABA programs.

    • Anne

      “Every single thing she knows, she learned from ABA. This is fact. Except for the things that seem to be her gifts.”

      She seems to have a gift for learning, actually. It seems like what she got from ABA was everything she knows about accommodating non-autistic people. While that is not an unimportant skill, Jez, I think your description of what ABA did for your child is somewhat inflated.

      I think it is possible to change how a person thinks about themselves.

    • http://www.autismvox.com Kristina Chew, PhD

      Thanks, Anne. I do have to thank Jez for writing so honestly about her experience with ABA and her daughter, and I really appreciate the discussion going on here. ABA has its limits and also its benefits, and it is very good to know what these are.

    • Leila

      ABA has its limits as much as the regular school curriculum has its limits. There’s no perfect way for teaching a child, because the systems are devised looking at the “general population”, not at individuals. So we as parents need to find the best schools/teaching methods available, and then complement that with our daily opportunities for teaching and relating to our kids.

      My son is like Jez’s. He knew how to spell and count at 2 years old without his parent’s help. Except, hey, he learned it from VIDEOS that he played over and over. Sesame Street. So of course I’m proud my son has this amazing skill, but it will be even better for him to learn how to share more joint attention with people and later be able to learn more things from live people as well, converse, share, engage. It would be easy for me to get a bunch of videos and let my son learn all academic subjects by himself, but that would not help him much in REAL LIFE experiences where he has to interact with 3D people and an unpredictable environment.

    • Leila

      Just to finish my previous comment… My son has opportunities to shine on his ABA sessions too because of his abilities. He learns fast, he makes associations. However ABA is helping him to carry those skills over to community life. And of course I don’t stop with ABA. I do Floortime, Hanen Centre techniques. My son LOVES everything, he even thinks his tutors are part of his “family” in his own words. He is not being “changed” by ABA, he is just learning how to use his own skills in a way that will help him coexist in society.

    • http://autismcrisis.blogspot.com/ Michelle Dawson

      What is being overlooked is what autistic children would accomplish if they were encouraged (e.g., by providing materials, information, and opportunities) to learn how a lot of science demonstrates they learn well.

      Instead, it is being assumed that this kind of learning, because it is not how non-autistics learn, is useless and unwanted in “real life” (where apparently everyone is supposed to learn the same way). Also, it is being assumed that if this kind of learning at one point involves videos (because, of course, these videos are freely available and contain certain kinds of information), then that is all it encompasses. Instead of building on this kind of exceptional learning, it is assumed that there is nothing of worth to build on, and that there is only one “real” way of learning.

      Programs that mix ABA with contradictory approaches like Floortime have been deemed by behaviour analysts to be ineffective (there are now three published papers claiming to show this).

      There often seems to be a lot of joy in how autistics learn well; there is a gorgeous account of this, and of how this leads to spontaneous social engagement on equal terms, in Miller (1989; this is a scientific, not a popular-level, book).

      Instead, autistic children now learn that their way of learning is inadequate, inappropriate, unwanted, wrong, etc., and that they instead will be lavishly praised and reinforced if they learn the “right” way–which is more difficult, dependent and limited.

      There is evidence that in ABA programs, autistic children get very enthusiastic about (as one child put it, after 6 years of ABA, while testifying in a legal case) getting rid of all their autism. There is evidence that autistics learn from ABA that being autistic (autistic learning, autistic intelligence) is wrong. And autistic children can become very happy that they are praised for no longer being the wrong kind of person they were before (there is evidence for this also). This can also result in problems when autistic children who “succeed” in ABA and are therefore mainstreamed, but fail to pass for normal. In an NYT article one such child cries, “What’s wrong with me? Why am I like this?”. This is an article which concludes (in the absence of any science, because there is no science about what happens to these kids–those in non-aversive early ABA/IBI–after age 7) that mainstreaming is an unrealistic goal for all but a very few ABA “successes”.

      I’m very grateful that when I was young (long, long ago), it was okay to learn in atypical ways. It was even kind of cool. Independence and originality in learning was valued and encouraged. Social pointing (as in joint attention) was considered rude, rather than the apogee of human social achievement. The work I do now is 100% dependent on my ability to learn in atypical autistic ways. In this area, I have not yet had any work rejected on the grounds that how I learn is useless in “real life”.

    • Jez Rourke

      Hi Everyone,

      Of course it is difficult for me to sum up my daughter who is a unique and complicated person in these few paragraphs. Suffice to say, she is the most gifted peron I’ve ever known. She continues to surprise me every day.

      It’s just a guess because she’s never told me how she learned to spell and add. She watched a lot of videos. She has a photographic memory. The first time she sat on my lap while I was working on the computer it may have been for 15 minutes and she was about two and half. She had already been diagnosed. I mentioned her interest in letters and numbers, so she had access to lots of letters. She was playing with her letters in another room and when I went in she had laid out the letters to match a QWERTY keyboard.

      I saw it on the floor upside down but immediately recognized it. I was stunned. I took a photograph of it. And she walked away. I switched the “E” with the “L”. Ten minutes later she walked in the room looked at upside down, switched the letters back and walked away. She didn’t see me move the letters and she didn’t look at it for longer than 5 seconds.

      This is clearly astounding to anyone, mostly me. I bought her a laptop computer and she was able to use it almost immediately. She surfts the web, makes bookmarks, prints coloring pages. She’s better on the computer than most reasonably intelligent adults I know.

      She is a superfast learner. But she needs to be engaged to learn. When she’s interested in something, she’s engaged. So the computer allows her to do all the things she likes to do, hence she learns quickly using it.

      There are reasons this child needed ABA therapy. Like for example, ABA engages her and she learns really quickly skills that she has no interest in. Like playing with other children, like talking, like communicating all of which she now loves and I don’t believe she would have acquired without a good ABA program. She was not interested in learning those things. Now she plays board games with other kids and loves it. If she didn’t like it, that would fine too. But she does and I do believe it pushes the boundaries of her comfort zone and she is more comfortable and happier doing more things. Without ABA therapy this child would not ever have stepped on the grass, she would not touch sand (her favorite thing is to write letters in the sand now). She would not have ever made eye contact without it, I seriously doubt that she’d be speaking without it. She’s learned to swim using ABA therapy and no longer fears water. And she loves it. She says I swim like a mermaid. These are without question valuable skills not because I value them because they enable her to communicate easily her likes and dislikes. She can tell me she wants 4 chicken nuggets instead of 3 which is nice so I know she’s not hungry. A valuable skill for her to communicate her need for food. Perhaps the most wonderful moment was a Saturday that she woke up and said, “I don’t feel like following rules today.” A wonderful skill that she aquired directly from ABA therapy. The ability to communicate that she needed a break. With an ABA therapist she goes dancing school. She’s the only autistic child in the school. Again, something she never would have done and she loves it.

      She has perfect pitch so she likes to sing, and of course play the piano. She cannot be in a typical classroom because she sings quietly all the time. She’s just started a typical preschool three mornings a week.

      The way I look at it, I am trying to give her every opportunity to grow into the person who she is. If I believed ABA was taking something away from her, I most certainly would not continue with the program.

      But that has not been my experience. I have seen tremendous strides in what she can accomplish with the use of ABA therapy. I’m not an ABA therapist. I used some techniques consistent with ABA therapy and she was toilet trained in one weekend at 2 and half years old.

      It’s still OK to learn in atypical ways and I most certainly encourage and support her individuality. And I am sure she will learn much much more in her life in atypical ways. But she will also learn to play the piano better with lessons she just started taking from a classical pianist who is also an ABA therapist. If fact, since lesson one she’s incorporated her pinkies into her playing. This does not harm her, it helps her to play better, which SHE likes.

      I have one chance to give this child an … the education she deserves. ABA therapy is tool in this goal and it’s tool that has proven to be invaluable.

    • http://www.autismvox.com Kristina Chew, PhD

      The kind of teaching my son receives via his ABA program (school and home) would have to be considered “atypical” in comparison to educational programs for non-autistic children, due to the way it is structured and so forth. I’m not sold on ABA for the “science” behind it, but for the learning we have seen in Charlie. As he has grown older, we have ourselves become more and more aware of how he has, as Michelle points out, his own ways of learning. I have had to learn this from him. I would also note that Charlie has had recurrences of difficult behaviors including SIBs throughout his life (before he ever did any therapy of any kind) and ABA seems to, in his case, to have offered the right kinds of solutions.

      But it is by no means a perfect system, and a good teacher, or therapist, understands how to change their teaching methods and philosophy to help a student.

    • http://autismcrisis.blogspot.com/ Michelle Dawson

      Sorry, I still disagree that autistics cannot communicate, etc., or learn in general, outside of ABA programs. I don’t see what is wrong with learning the way autistics learn well, except that there seems to be a strong prejudice that this kind of learning is inferior or useless and instead of being encouraged, must be replaced.

      In the Auton Supreme Court of Canada process, the applications for leave to intervene included a letter from a behaviour analyst claiming that musical ability was useless in autistics–unless we are taught compliance, etc., in ABA programs. This is a grossly anti-scientific and prejudicial position.

      I also have problems with parents predicting the futures of (I am guessing) very young autistic children (I’ll blog about the science of this some day soon I hope). The usual “she will never do this, will never do that”, is adjusted in this case to claim that without an ABA program “she would never do this, would never do that”.

      I believe it’s necessary to respond when it is claimed that autistics cannot learn except in ABA programs. Left unchallenged, this has the effect of ensuring that autistics who do poorly in ABA programs (which, according to the science, is most of them) remain in them indefinitely.

      This also has the effect of writing off most autistics, because we are too old to have undergone ABA programs from an early age. If it is impossible for autistics to learn outside of ABA programs, than none of us older autistics has learned anything at all. Even if I didn’t know a lot of quite brilliant older (and come to think of it, younger) ABA-deprived autistics, the peer-reviewed science demonstrates that autistics learned well and achieved a great deal long before Ivar Lovaas set up shop.

    • http://www.autismvox.com Kristina Chew, PhD

      Thanks, Michelle—I’ve learned a lot from reading your critiques of ABA on your blog and here. The type of ABA that Charlie has received as changed a lot, which is not to say there is still much room for improvement. And, I am very suspicious of any use of the words “never” and “always” when it comes to educating autistic children.

      Jez, I can’t think you enough for sharing so much about your daughter. Through whatever way, or combination of ways, she has learned—hope to hear her playing the piano some day.

    • http://www.rettdevil.com Kassiane

      I don’t understand why eye contact is so important.

      In my 24 years I’ve made under 1 minute TOTAL of eye contact, near all of it with autistic kids who were recovering from classical Lovaas programs and requested that I look at them. In spite of this ‘deficit’ I’ve held jobs, and not ever been fired.

      ABA has useful techniques for some kids, autistic and NT. I used the one known as chaining for teaching NT kids complex gymnastics moves. But it isn’t the only or best way for teaching all, or even most, autistic kids. I’ve found Miller Method techniques to be Good Stuff as far as engaging a kid so I can TEACH them, I teach advocacy skills. Happiest kid I had in autistic gymnastics had Floortime education (he was 4, learned to talk during our 10 week session).

      So ABA for all, I don’t buy it. Sensory needs are ignored too often, naturalish interaction, lots of stuff that I can’t put into words…and of course no one is going to be following you around in the real world giving you a skittle.

      (Doesn’t help that my adoptive dad was traumatized in the early UCLA experiments. He can pass, but at a HUGE cost, thanks to aversives & 40 hrs a week. *twitch*)

    • Jez Rourke

      Kassiane,

      I loved the point you made about NT children and ABA. I have three “typical” nephews around the same age as my daughter and I think they would greatly benefit from a little ABA.

      You know I don’t mean overestimate or make predictions etc. The point being I have this child who I love who has special needs. I’ve investigated everything I could find in an effort to make her life more comfortable and to give her the possibility of going wherever it is that she can go.

      To be brutally honest, I thought ABA therapy was the worst possible thing a person could do to a child when I first delved into it. I didn’t cry over her autism diagnosis. I cried when I had to make the decision to try ABA therapy. It went against everything I believe as a human being. I was afraid that it would do the worst possible thing I could imagine. I was afraid it would break my child’s spirit, that it would extinguish the very things that made her herself. And I do believe that to be the saddest, blindest offense a person can inflict upon anyone, much less the person they love most in the world.

      So believe me, it was with much anguish and education on my part and baby steps to ensure the safety of my daughter’s spirit, her heart, her soul, that I approached ABA therapy.

      Her first team was provided by the state and I they were a “not so good” ABA team. I didn’t know that when they started working with her but I do now. All I knew was she was not responding well to her therapists and I didn’t trust them. I threw the whole team out of my house and looked for something better.

      It’s worked out well for her and she’s never had a skittle in her life (no sugar, dairy, gluten). That made me laugh Kassiane…. wouldn’t it be nice if someone followed you around giving you a skittle for everything you do that’s good? I think my boss should give me a skittle for every five minutes I can stay off the phone. I deserve a skittle. we all do!

      So, lest ye think that I placed my beautiful daughter into the hands of the unknown just because it was an option I most certainly did not. It was more like breaking every one of my fingers to let her go and try every possible opportunity to allow her to blossom.

      And she does. Maybe I place too high a value on the ABA, maybe I place too little value on it. I don’t know. I do know that an excellent ABA program it has enabled her to learn things and do things I’m pretty sure she wouldn’t be doing.

      Thank you all for making me think.

    • http://autismcrisis.blogspot.com/ Michelle Dawson

      While the science supporting non-aversive early ABA/IBI programs is weak when it comes to short-term child outcomes (and non-existent re longer-term outcomes), the science showing that parents are delighted (no other word springs to mind) with ABA programs is more impressive. More than once in cases where ABA programs did not result in any measurable progress in children, the parents were delighted anyway.

      The problem is that strong parental devotion to all kinds of autism interventions (including extremely dubious and harmful ones) is a common and repeated finding through the history of autism-as-a-condition. The famous behaviour analyst Tristram Smith has long written and spoken about this (e.g., Smith, 1988; 2006). I was somewhere in the room when he described this problem–virtually every marketed autism intervention acquires devoted advocates–at his special symposium presentation at IMFAR last year.

    • http://www.autismvox.com Kristina Chew, PhD

      I think parents feel like they, we, just have to do something—–and we fear to err on the side of doing too little.

      And sometimes, then, we may do too much.

    • Jez Rourke

      Definitely Kristina…..

      You get one chance at this which gives it a real sense of urgency. There’s a lot of pressure to DO SOMETHING. And I don’t think this is unique to the issue of autism. Being proactive FEELS a lot better. It’s empowering. The alternative, crossing your fingers and hoping makes you feel like a victim. So, given the alternatives…. we choose action which is probably better.

    • Rochelle

      Thanks for sharing your experiences with ABA, Jez. My son was diagnosed at 5 with autism last May and, I’ll admit, I’m new to the “autism reality show.” It’s interesting and insightful to read about someone else’s experiences, for good and bad with different therapies and approaches.

      My son gets ABA therapy somewhat at school, but we don’t have “formal” ABA sessions at home after school. And, I often feel guilty that I’m not doing enough or that I need to do more, but I reconcile that what “when you see one autistic child, you’ve seen one autistic child.” We do what works for us. A little ABA at school, a little “one-on-one-with-mom time” at home, and a little Blue’s Clues for good measure. He’s so wiped out from school, I think his head might explode if I tried to do anything formal with him afterward. He needs his own private, decompression time.

      My son is doing relatively well and I’m enormously proud of him. And, I appreciate that you shared your experiences here, especially since they offer a unique and valuable insight.

      I wish both you and your daughter well.
      R

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    • http://autismspectrumdisorders.bellaonline.com Bonnie Sayers

      I got to this too late and all the links no longer work, except the one for lonely boy, which actually takes me to the new post on groceries.

      I like how NY Times keeps their links, as I have some from many years ago that still work as I checked them recently for an article.

    • M’s Dad

      Our 11yo daughter is autistic and severely intellectually impaired. She is also a sweet,sensitive, kind and shy little girl. She was having trouble meeting the academic demands at her school and would sometimes cry, or crumple paper worksheets when frustrated. The special ed staff labeled these reactions as tantrums and destructive behavior. The principle asked us if she could “pick the brain” of a wonderful person that “knew allot” about autism. Three months later, after picking her up sobbing every day we found out that the school had hired an ABA “Therapist” to work with our child! NO IEP, No Team Meeting, No CONSENT or even the courtesy of a note in her daily communication book. This ABA “therapist” didnt think he needed to involve family because the problems were happening at school! Neither the therapist or school think they did ANYTHING wrong! We are disgusted with them, but especially with the BCAB “certification board” that refuses to do anything about it! There may be good ABA therapists, but the field is a loose cannon with NO oversight or accountability. Beware if they come near your child.