touch nose. gummi bear: ABA in our family

This will be a series:
Touch Nose.  Gummi Bear: ABA in our Family
Touch Nose.  Gummi Bear:  What is ABA and why does it suck?
Touch Nose.  Gummi Bear:  Why treatments designed using ABA are all the suck
Touch Nose.  Gummi Bear:  If ABA is so bad, why is it used so often?
Touch Nose.  Gummi Bear:  Voices of Autistic Adults.  Adult Autistics who are willing to take a brief survey.  Click here.

The time has come for me to write the dreaded ABA posts.  Dreaded by me because it isn’t the kind of thing that I write well.  Dreaded by some of you because you think ABA is where its at.

I’m compelled to write it because I believe it was one of the factors that contributed to Issi Stapleton’s physical reactions.  I’m compelled to write it because I’ve seen, first hand, the effect it had on my daughter.

If you use ABA, please don’t go into defense mode.  There are some things that ABA has branded as ABA that are not the intellectual property of ABA.  Some of these things, I like and am fine with using as tools for Evelyn.

  • Data Collection–when used as a tool to determine antecedents to meltdowns, seizures, etc.  I do not like data collection to determine if a student has mastered a skill.
  • Breaking down tasks into small steps
  • Visual schedules

Our family’s history with ABA
So, I thought I would start by telling you about our family’s experience with ABA.  When Evelyn was still in Early Intervention, PECS were introduced by her speech therapist.  At the time, Evelyn was probably nearly 3 and was still verbal; however, she was mainly using consistent speech approximations and signs.  She was not yet stringing words together.
I admit to having had a bee in my bonnet about PECS right off the bat.  I was told that when we were doing PECS, we could only honor requests Evelyn made using the picture symbol.  If she signed or verbalized, we could not honor it.  And it was not counted as a success.  I was also told that giving Evelyn access to the PECS was “dangerous”.  It had to be implemented in this very strict way–you know with the trials and the recording of data, etc.  So, admittedly, I didn’t buy into PECS.  I was also at a point where I was obsessed with Evelyn’s verbal communication.
Evelyn stopped speaking and signing shortly after she began using PECS–I’m not attributing this to the PECS in anyway.  She entered Early Essential Education when she was three and continued working on the PECS.  I believe, at this time, discrete trials were introduced and I think I heard about the words “table ready” but didn’t give them much thought.  Evelyn was not making significant progress in any area.  Her EEE special educator suggested that we apply for ILEHP.
ILEHP is, theoretically, a utopian interdisciplinary collaboration–think medical, PT, OT, SLP, social workers, etc.  We were to come up with three questions for the team to answer.  At this point I don’t even remember what the three questions were.  I do remember that I was perseverating on Evelyn starting to verbalize again and was majorly down on PECS.  I also remember that this is the first I heard of ABA.
They showed a video of a young child “working” on this chain of tasks.  She did it with such efficiency and focus, I was truly impressed.  I didn’t ask enough questions or give it enough thought at the time.  Had I really thought about it, I probably would have seen that the child was performing like a robot.  And the tasks were not practical.
During EEE, I didn’t agree with her speech therapist in a lot of ways…and I can see where my thinking was incredibly flawed by my desire for Evelyn to verbalize.  But her SLP and Developmental Educator were totally great.  I have doubt of their respect for my daughter.
Fast forward to Kindergarten.  I believe, at this point, Evelyn started receiving services from the school’s Autism Specialist daily.  I believe I insisted on this.  BIG MISTAKE.  Enter the school’s Autism Specialist–BCBA spending a good deal of time with my child.
And then, where Evie liked school previously, she no longer did.  Coincidence?  I think not.

From an email I wrote shortly after  it started January 16th, 2012.

I am really concerned that it sounds like Evie is biting and protesting (flopping to the floor) so much at school. I think the breaks without stimulation mentioned above will help. I would like to see more data about this in Evie’s daily notes home. I am concerned that she seems to be feeling so frustrated and am wondering how we can make this situation better. Please have S and whoever else works with Evie make a note of what happens and when and I will see if I can come up with any ideas. J mentioned that she has a different theory and approach when Evie flops than we do at home. I can’t remember if you’d already left. J said that you guys make Evie follow through on the request to say wash her hands as she doesn’t want to reinforce the protesting behavior. While I can see where J is coming from, I disagree when it comes to Evie. We find that ignoring the protest for a minute and giving Evie a moment to collect herself works best in that she calms down quicker. I don’t feel that it reinforces the behavior as she still needs to follow through. We don’t like forcing Evie to do anything unless she is exhibiting an unsafe behavior like biting. I am guessing that other children at the school protest occasionally and that they are not physically forced to meet the request of staff. I don’t want that to be different for Evie.

And then came the reply from the Autism Specialist:

In my observations, I noted a contrast when staff waited for her to stand up after flopping. If the same direction was given, she would flop repeatedly and become more distressed. In effect, she was less likely to comply with the direction and became more resistant to prompting. Staff rescinded demands a few times. The data thus far indicates that the flopping and biting occur when she is directed to do something she doesn’t want to do or is thwarted in her pursuit of desired items/ activities.

In the field of Applied Behavior Analysis, behavior is treated by it’s function. Rather than a universal response to a developmental age, the purpose of the behavior is used to determine programming. I do believe that the behaviors are being reinforced as the immediate consequence serves the function of avoidance/escape and the behaviors increase in frequency and intensity after (the definition of a reinforcer). In addition to the skill building (appropriate communication, receptive comprehension) and proactive interventions (prevention, reinforcement for following directions, visual supports), it is important to interrupt the reinforcement she is getting for these behaviors. We deliberately implement reinforcement contingencies to teach and strengthen behaviors. Similarly, It is important to interrupt unplanned contingencies that serve to strengthen maladaptive behavior.
Prompting is a large component of the errorless instruction (DTI) that has been successful with Evie. Prompts are used to set her up for success and reinforcement. This is the goal in all learning situations. It is not to force her in isolated situations, but to implement evidence based procedures to teach skills. Data will be collected to monitor progress. I will compose a draft of a behavior plan, including proactive programming, to review with the team.

Several emails later from me:

I never meant that Evie should be allowed to refuse certain requests indefinitely. My experience with Evie is that giving her a second and then immediately transitioning into the activity is very effective. If staff is rescinding requests, even if only occasionally, I believe that does, indeed, reinforce negative behavior.
I do not feel that biting or interrupting the education of other students is ever acceptable. However, I maintain that I do not want my child to be physically forced to comply with other requests at this time before giving her an opportunity to collect herself–like ten seconds is what works at home. I think it is essential that we bear in mind that Evie’s autism diagnosis is a secondary diagnosis to the constant discharges she has in her brain. It was explained to us by the child development clinic (Susie was present for the evaluation and diagnosis) that these discharges cause autism like characteristics. Therefore, the requests that are made of her may not be able to be realistically met–she needs time to process demands. I think we need to start at the beginning–identifying stressors, perfecting the procedure, and collecting enough data to allow an accurate interpretation.
I want to work collaboratively with this team. But I must be honest and let you know that I see a lot of backsliding this year that I can’t help but attribute to the fact that we haven’t stuck with what works with Evie–the schedule, the breaks that her neurologist indicated, etc. In a lot of ways, I am concerned that effective parts of Evie’s program from last year have–aside from speech and language–have been abandoned resulting in a change in her behavior. I feel that further discussion is definitely warranted–I would like to sit down as a team with last year’s team to discuss her program last year and the outcomes of the ILEHP program that we participated in.

That was when it really started to dawn on me.  Something is not right here.  Evie was a happy kid–did not engage in physical aggression at home–or very rarely.  When she started getting ABA’d, the physical reactions started.  As time went on, I became more and more convinced that ABA was at the root of her unhappiness at school and the physical reactions in which she was engaging.

The Autism Specialist and I argued back and forth over this for almost two years.  She made statements that she was “not comfortable authoring a behavior plan” which allowed Evie the space, bodily autonomy, processing time, etc that I asked for.  And that her neurologist indicated was essential with regard to her medical conditions.

Most of our arguments centered around Evie’s autonomy, around the fact that the Autism Specialist repeatedly told me that ABA helped with Evie’s “deficits caused by Autism”, around my demands that she not be forced to make eye contact, and forced to have “quiet hands” or “table ready hands”.  Mostly we disagreed over whether Evie was exhibiting “negative behaviors” (her opinion) or whether Evie was communicated (mine, her neurologist’s, and psychiatrists).  And what on earth was the purpose of ABA—the title of this series:  Touch Nose.  Gummi Bear.

For the longest time, I didn’t really have the words for why ABA was not feeling good.  And then I read this.  And it REALLY didn’t feel good.  I wrote, my most popular post, to date, The Cost of Compliance is Unreasonable after reading Sparrow’s post.  At this time, my Autistic friends found me and rescued me.  After talking with them, I became more and more adament

Then I went in and observed for a day.  And that was point break.  You can read about that here.  To sum up, Evie’s WAS communicating–that she had a psoriasis patch that was itchy, that she was thirsty, that she needed space.  These were communications were ignored because the behavior they manifested in were undesirable.

At the end of the 2012/2013 school year, Evie had not made meaningful progress.  Again.  We asked that the Autism Specialist be removed from the team.  We were left with a team of people, with whom we don’t alway agree, but are willing to forgo the parts of ABA that are harmful, look at Evie’s behaviors as communications, and explore other ways to help Evie make educational progress.

We’re still waiting to see how she progresses educationally.  BUT, Evie is so happy this year.  The child that we see at home, is also the child that they see at school.  I have no doubt that the fact that she is not being subjected to ABA is the driving reason for the change in her temperament.

K. from Radical NeuroDivergence Speaking is, coincidentally, doing a similar series which I encourage you to read.  Indistinguishable from Peers-an Introduction.

26 thoughts on “touch nose. gummi bear: ABA in our family

  1. I have to say that for some kids who are entirely nonverbal at the time, PECs when used in conjunction with other communication can be a great transition We started using them with our son when he was 18 months and had requested a banana by whacking me on the knee with a banana puzzle piece and pointing to the kitchen door. The SLP of course said it was too early. The SLP of course said that 18 month olds cannot determine that a picture stands for an object. I of course would not change course. And in our case as we did not insist on only one communication method, there was a pretty smooth transition after our son decided he WANTED to use speech. (That was when I showed him an alterative communication device of some type, when he was about 3 and a half, and asked him if he wanted it to help talk to us….his response: “No, I want to talk.” after which he did not for about another year. Now he talks constantly, at almost 16 years old.

    • Jane–I can totally see where PECS would be helpful for some kids. However, there has to be some flexibility in implementation. It didn’t work for Evie–we tried for 4 years with no progress. But I was very wrong to prioritize verbal communication over all other types.

      • I think PECS is great, but the way it’s taught is completely out to lunch. Behaviourists have no clue how language learning works – one of the important death knells for behaviourism as the dominant model in psychology was Noam Chomsky’s review of BF Skinner’s Verbal Behaviour. (Background: Noam Chomsky is a well-renowned linguist, BF Skinner is the founder of behaviourism, the theoretical model underlying ABA. Verbal Behaviour was a behaviourist account of language learning, and Noam Chomsky pointed out how the actual data on children’s language learning doesn’t fit that account in the slightest.)

        I haven’t been involved in planning how to teach a nonverbal child top communicate, but I have been working on helping my pets (who are also nonverbal) communicate more effectively with me. It’s important to build on what they already have, instead of jumping in to replace it with what you want. I really like for this purpose, because it gives you a really good picture of what they’re already doing.

  2. This is a wonderful post for those who feel guilty not subjecting their children to hours and hours of programming every day because the “experts” say you should. Don’t get me wrong, I am in awe of parents who can keep marathon schedule like that going, with everything else that is involved. Right or wrong though, I couldn’t do it. My daughter started with Infantile Spasms, the hospital telling us that she couldn’t learn a thing until the EEG was cleared up (didn’t happen until age 7!), and the therapists telling us we had to get her into a strict “autism program.” Thank goodness we didn’t listen to either. If we would have waited until age 7 to try to teach her anything she would never developed, and after looking at the programs I thought, it looks more like they’re breaking their spirits and training a dog than teaching a child! Everyone told me I “had” to have staff come to the house 30 hours a week, and after the first year and a trip to the psychiatric hospital because she was throwing her furniture at the therapists, I could not even justify her being in school all day and being expected to be in therapy the rest of the evening! My heart hurts thinking about what she must have gone through not being allowed the time to be a child.. The truth (to me) is that the programs only try to train our children to act like someone else, instead of looking at the CHILD and how and what they can learn. BTW, we had the whole PECS system set up and never used it, she began to pick up signs and said her first word when she was 5 and finally put two together at 7, and we were thrilled. It wasn’t our way, it was hers, and she’s 20 now and we wonder if she will ever stop talking! And what she can’t do we still work on, in our own way. 🙂

    • I can so relate to what you are saying. My daughter is 21 now and has been through all the training and I’ve repeatedly have said they are not training a dog, that she is a beautiful unique individual who needs to be treated with respect. She is now so prompt dependent it is sad. She knows how to do things but will only do them after she is told to. She too used to love going to school but with all the ABA, DTT and low expectations she hasn’t learned very much from school except for training that doesn’t help her in everyday real life. We are trying to transition her this last year of school to an adult center and just like the rest of the years, the school is making it harder to do what needs to be done and could be done with a lot less stress and frustration but it has to be their way. I am so angry with these schools and so called professionals. You have people who do not know my daughter who come in for an hour and then precede to tell us what she needs and most of what they suggest is what puts her into meltdown mode. The sad part is years ago I was for ABA until I saw what it did to my child. It may help some but it is NOT a cure and it can also be damaging if not done right and I have yet to see a school system use it correctly.

    • Re ‘training a dog’ – I have a 16 week old chocolate Lab, and while I’ve used a few behaviourist strategies to great effect with her, there’s no way I’d consider subjecting her to 40 hours a week of training to teach her to act completely differently. I want her to sit when I tell her to sit and to not jump all over me, but I still want her to be free to be a dog. I’ll give her walks and chews, not eliminate the behaviour that tells me she needs exercise and oral stimulation. I’m her boss and she loves to please me, but she still has her own needs that I must ensure are met.

  3. When i was young I had a session, not ABA, speech therapy, where I had to pick the right picture for cookie, soda or cracker. If I did it right I could get the real thing. But the real cookies were on the other side of the room and instead of the pictures, I would go for the real thing. I failed the test, according to the therapist. She said I could not understand.
    As for ABA I was denied food because I was “non-compliant” when asked to get up and go to the table. My body does not work like this. I still need, many times, someone to touch my shoulder, to count 1,2,3, or offer me a hand. But this could not help because they wanted me to be compliant and “learn”. I knew what to do, I just couldn’t.

    • Amy, I am so sorry you and many others had to go through this. As a parent of a young adult with DS/Autism, HOH, sensory and so many other dx’s I have seen my own child go through this and it makes me sick. I lost faith in the very professionals who claim to have my child’s best interest in mind. No, they don’t. I see the damage that ABA has done to my child and also because it was not implemented in the way it should have been. There was no fading of prompts so she became more and more prompt dependent, they do not use her communication as it should be used and just ignore the things they don’t understand. I have now a young lady who is aging out of school into the adult world and who has not been prepared for it at all.

  4. Reading those email exchanges was very intense. The coldness of the language. I have said this before…I am so thankful that we couldn’t afford/didn’t have access to ABA from the get go. I figured it out pretty quickly that it wasn’t for us, I can only imagine what might have happened had we gone that way. ((Hugs)) Thankful for you and your honesty.

  5. I’m a young adult woman with ASD. I was under the PA Adult Autism Waiver for about 18 months and I had a behavioral support staff who used ABA principles to modify my behavior. I have anxiety-driven self-injurious behaviors, which I was and am very open to finding ways to change, but they were focused on my stimming behaviors that made me stand out. They didn’t want me to use fidgets because it was not age appropriate. They used videos and TV shows to work on identifying emotions, but they were very focused on only watching “age appropriate” shows, which were often laden with dirty jokes… not a fan. I found the whole thing very disrespectful to me as a PERSON.

    • I am so sorry that happened to you. I hate that word “appropriate.” When I watch so many children and teens, and even so many adults and parents, who swear and bully, make messes, and suffer from greed and bigotry, and who are supposed to typify normal, I can’t find a reason to try to train my daughter to “fit in” with society. She doesn’t act like them, why is that a bad thing? I really loved reading your comment, and thank you for sharing that. My daughter is 20, but she can’t tell me everything she is feeling or wanting or needing or remembering. Every little glimpse into her world is so important to us!

  6. Very interesting post. I’ve been reading a lot online since I heard about the Stapletons. I also keep thinking about a local family that has 5 children with autism. One child is severely disabled and might end up having to leave the house due to his extreme behavior, although it sounds like the parents really don’t want this. I am a therapist in a special education program (that does not use ABA), but I am somewhat aware of how ABA works. The child in the family I mentioned was going to another school in the area that does use ABA, but even that school feels like they have gotten to the point that they can’t help him anymore. I really feel bad for him and his family and what they’re going through. You can read more about them here: Your post has been enlightening. Thank you!

  7. Well said…such a breath of fresh air to read what I feel on a daily. The lack of continuity between medical diagnosis and treatment and educational treatment with our ‘free and appropriate education’ is not even close to being right. They say the parents have the voice yet muddling through the legislative and political nonsense is overwhelming! Awesome job in sticking to your guns and advocating for your daughter!

  8. ILEHP. A VERY strange coincidence, Our son, Eric was diagnosed PDD NOS, at about 2.8yr, then Autism. He spoke, then regressed. We moved to FL to live near a “Defeat-Autism-Now” physician, because many were still ignoring the exponential rise. He had a colonoscopy later in life and diagnosed with a disease, ILNHP Illeal (?)lymphoid nodular hyper plasia (all one word). His gut had inflammation and tests showed sensitivity to wheat, cow’s milk, carrots, other high-oscelates, nuts,…watermenlon, beef(not bison), turkey(notchicken)…he’s 15. Did well wil ABA, but boys and girls are different. But he is low-verbal, he can understand a lot, still likes Teletubbyvideos inserts with the kids.

    • Lisa–I am not seeing the coincidence. ILEHP stands for Interdisciplinary Leadership Education for Health Professionals here in VT. It isn’t a disease. Also, I also find DAN doctors to be dangerous, misleading, and offensive. I agree that food can affect other comorbid conditions. And I disagree that boys and girls are different in anyway related to ABA designed treatments being ethical or appropriate for them.

  9. I have read this with tears of sadness that so many of our children are being subjected to ‘systems’ which only appear to ‘control’. Ticking boxes and form filling take precedence over our children’s feeling and attempts to communicate. We have just made the biggest decision for our child and rescued him from an education system that tried to control him and ‘teach him to do what he was told. We are now educating him at home. I can’t describe the change in him. We now have the happy quirky adorable little person that we knew back again. He is learning that life is good and that he can make decisions for himself rather than blindly following others. So delighted to have found this community. C now uses Gummibear (the song) to dance and have fun and that’s living!!

  10. This may well sound a bit strange. I’m trying to get this straight enough to communicate it in writing.

    1) ABA is ‘invasive, aggressive, and designed to instill great fear. It is predicated upon punishment.

    The above is the ostensible, visible portions. There is more, a lot more, most of it less-visible, and all of it darker in tone.

    The first of these deeper and darker matters is the enthronement of the ‘therapist’ as all powerful (in regard to those being ‘straightened out’). Quote, supposedly from Lovaas hmself:

    “You see, you start pretty much from scratch when you work with an autistic child.
    You have a person in the physical sense — they have hair, a nose and a mouth —
    but they are not people in the psychological sense.

    One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”

    Deeper still: the unconscious notion, manifesting as magical thinking (ala Shamanism): “as you behave today, you will become tomorrow. The principle is more or less identical to what shamans do when they dress up as animals with masks and skins.

    Deepest of all, however, is the following: in doing this, the ‘therapist’ is seeking to create a permanent (magical) attachment between himself and the targeted individual.

    The whole matter of radical behaviorism is essentially that of ‘magic’ – as in it reduces people to behaviors, and renders behaviors meaningless save as a means to the ‘theraprist’s’ ends, much as if he or she were engaging in ceremonial magic(k) and creating a *homunculus*.

    If the above sounds weird, that’s because it’s an attempt to describe what is actually happening at the unconscious level in the mind of the ‘therapist’. Most people doing that particual ‘work’ will deny all of the above, much as they loudly speak of all behaviors being learned, and that by conscious choice – as doing so increases their status.

    In order to effectively stand against this kind of evil, it is neccessary to comprehend its motivations. Ignorance more or less guarantees failure in this kind of warfare.

    • forgive the necro-post:

      as an asd trans person, with a background in psychology… and training in ABA (i figured i needed to have some more inside training before i tore the house down) i can assure you that lovaas did indeed say those things. i can dig up my text books and provide you with direct quotes if you like even.

      but lets not forget that lovaas is also the founder of the equally ignoble anti-lgbt ex-gay movement. which is essentially nothing more than ABA for the queer community. this man has been destroying neurologically diverse people from beyond the grave for years without end, all the while his disciples smugly sit around and tell us that they are doing it for our own good.

      i have found however that they are invariably authoritarian personalities whom are driven to find situation where they are placed in power over the most helpless and vulnerable among us. punishing small infractions against social norms with punishments that are indeed aversive no matter what they rationalize it to themselves as (the one i most often hear is that if it is not aversive to the ABA practitioner than it is not considered an aversive). some of which can be torturous ( others fatal… (

      end rant.

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  12. Pingback: Let’s Talk about the Autism “Puzzle Piece” | Celebration Generation: Food, Life, Kitties!

  13. Regarding ‘as you behave today, you will become tomorrow’ (the sense I had, anyway): seems ‘the great Lovaas’ spat out a statement that more or less ***said*** this precise thing! I’ll try to find the exact Urlacher so you-all can see for yourselves.

    As per usual, I’m quite surprised when one of my ‘hunches’ turns out to be correct. Gaslighting tends to do that, and as a then-undiagnosed autist (formally diagnosed some years ago) I ended my share.

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