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.