Before we deep dive into this subject, I want to alert you that this is going to be a long read. It will be better with a cup of coffee or tea perhaps! I will start with a refresher on the phrase “carrot and stick”. In our growing up years, I think we got a lot more stick from our parents than carrots when it came to being productive at school work or other tasks that required us to be fruitful! Ring a bell? Yes, carrots = rewards and stick =punishment! I think parenting has evolved to be more mindful and sensitive about the exposures that children have these days when compared to earlier. So, as parents we walk on a delicate balance of managing rewards and enforcing consequences (the word punishments seems so archaic now). We are mindful of our children’s interests and desires. We try to inculcate good healthy practices so that children are motivated from within to do everything right! However, that’s an ideal scenario and every day is not going to be ideal isn’t it? So, may I say we still resort to the carrot and stick principle as it gets us through the day?
With that perspective, let’s dive into ABA or Applied Behavioural Analysis Therapy. It is one of the evidence-based therapies that has existed for a long time. Simplistically speaking, it is about teaching the autistic child the skills that they are lagging in, with respect to their peers. They include every skill you can think of-fine motor, gross motor, visual tracking, cognition, comprehension, executive skills and many more. In our case they even taught my son to gulp down capsules and from then on there were no more struggles when it came to administering fever meds or supplements.
Some of the skills are taught at school by teachers too, so why is ABA required? Firstly, this is a one-on-one therapy and mostly requires a lot of ‘repetition’. Every little thing taught is repeated till its ‘mastered’. So if the child has very weak fine motor skills, the therapist will begin teaching in small steps with different ‘prompts’ as in first by helping completely-say hand on child’s hand, then slowly just having hand on child’s arm and then may be just put the hand on the shoulder and then just no help at all or ‘fading out’ the prompt completely. This is sort of like how you will aid a one-year old child to walk. But for every step above, the child will do multiple repetitions and for every good attempt or a set of attempts as the case may be, will get a ‘reinforcer’. Yes! Reinforcer= Carrot which is basically anything the child loves most at that point in time. ABA is based on the premise that reinforcement of the correct behaviour will increase the occurrence of that behaviour. Why all the repetition? Its not because our kids aren’t intelligent but their grasping power has been affected by various underlying conditions that would best be addressed in another blog!
Can a parent be an ABA therapist? Sure why not! If the parent understands the importance of structure, is well-versed with the techniques of ABA like token systems that help obtain your child’s compliance, has plenty of patience, can devote a good amount of time, is able to make the required resources which include all kinds of visuals and aids, is ready to get work done even if the child is having a bad day and has the tool enlisting the comprehensive age related skills you need to teach the child, it is definitely possible for you to turn therapist. I somehow couldn’t see myself justifying that role, so we took help from an academy which provided therapists trained in ABA.
ABA status in our household. Before we started ABA intervention, when our son was 5 years,we had approached a premier school and the admission was denied with a suggestion from the principal that we should try a remedial school first but we were not in favour of a remedial setup and we began ABA instead while he still attended the preschool near home. Within 8 months into ABA, I again requested the principal to consider my child and he and the counsellor were very surprised by the growth. They were doubtful but decided to take my child into KG, and asked us to have the ABA team facilitate him in school and it’s been 3 years since. There has been tremendous growth; this year in Grade 2, when I saw him comfortably multiply with 2-digit numbers, I was reminded of the days when he struggled to use his fingers to do simple addition in Grade 1. There are areas of concern but he can now work independently and facilitation in the classroom is slowly being faded out.
Our concerns about ABA 1:Initially I found it difficult to trust the process and the therapists. 2: I felt it was crazy that my child had to be given lollipops or smarties (something like M&M) for say, just writing a letter A. Will he be always dependent on external motivators? 3: I was afraid they will fail to see my son as an individual. He may be a child on the spectrum but the autism spectrum disorder is as broad as the number of different children diagnosed with it so each has a unique personality.
Measures taken. While I write about what measures we took to address the concerns, I thought it would be nice to blend in some ABA jargon as well. (For concern 1) I talked to the therapists constantly and it got easier to trust them with my child. The client- therapist relationship was more on paper and we worked like a team. The supervisor of the team was an incredible young lady with good amount of experience and an expert at her job. She recommended the website- Institute for Behavioural Training (https://www.ibehavioraltraining.com/ibt/parentelearning). Completing the online training modules, not only helped me understand autism and ABA better but how my son needed things to be. It helped me understand and gain confidence in what the therapists were doing with my child, how they set expectations with him and handled him. I ensured that my husband and I will provide a sense of sameness by following similar strategies in our day to day interactions with him. It is important to note that most kids on the spectrum love structure, pattern, routines and rules. They thrive well if things are familiar. They feel safe and self-assured if they know what to expect. After doing this training,I got myself a printer and laminator and we had reminders and visual schedules all over the house. There was an automatic decline in tantrums and as parents we felt we were back in control. The team lead would always give me a quick tip or two whenever she frequented my home. While, I could approach the team for advice, my suggestions were also well received. With regards to using the stick, they followed guidelines and always kept me in loop if they had to bring in a ‘consequence’. A full update on what happened and activities done, was communicated after every session. This helped because in the event of my son losing his reward, we would need to be prepared for all kinds of unregulated behaviour. ‘Response cost’ a technique where rules and tokens are set; child loses tokens if rules are broken and if tokens are still remaining on completion of task, the child gets his reward. I saw this as a beautiful visual indicator for my son on how his actions can take his reward away and conversely how his actions can get him his reward. We must remember that these techniques cannot be seen as merely training a child to react but being a visual indicator, this technique aids the child. Our children with autism spectrum disorder have challenges with auditory processing – either they can’t follow multiple instructions or they tune out information. So, if we go the usual route- constantly giving reminders about rules to work efficiently or even talking a lot while teaching can actually burden the auditory related processing. So, these consequences help get more compliance and children learn more quickly.
(For concern 2) The biggest concern was regarding the premise of ABA which is the use of external reinforcers like 10 min of favourite videogame or cookies or a lollipop or chocolates as rewards for doing tasks. Will he ever be motivated to do a task without rewards? Will he ever do anything without wanting rewards? This is also what the ABA controversy is about -Are they training our children like how one may train a dog to do tricks? What kind of individual will my child grow up to be- someone who looks for constant external motivations to do tasks? I choose to talk about this with only my child’s experience as a reference. The team of therapists we had, were trained from an academy that complies with the C.A.R.D (Center for Autism and Related disorders) rules. It is an organisation that ensures therapists don’t just do their own versions of ABA rather stick to the guidelines. This team of therapists was able to win my child’s trust and mine. They continuously brainstormed for reinforcers that were healthy for his growth. They also did their bit in weaning-off the reinforcers that I wasn’t comfortable with. They used his obsession for a toy ladybug to teach about ladybugs, they made token systems and games around ladybugs. They used baking, board games and fun physical activities to teach language and academic skills. Today, especially after the COVID situation, where I have to help my son finish his school work, I can safely say that he is not dependent on rewards(carrots!!) to do tasks. Like his peers he is motivated by his interests and has the urge from within to do better.
(For Concern 3) Our child means the world to us and we want everyone to see him that way too. We want that his individuality is not compromised irrespective of what the guidelines of any therapy is. I believe that any form of therapy cannot be bigger than who it is meant for. So, if something needs to be bent/ customised to my child’s needs then it should be. At least that’s how my thinking is. The supervisor tailored my son’s learning program to cater to the demands from his school while still keeping sight of the gaps in my son’s growth and development. Even though team members changed, I made it a point to let them know who my son was. I created a document that I call “team induction bootcamp” that they got to read before they worked with him. I feel this helped them understand my son’s personality and get onboard quickly. They also taught skills on the go. It wasn’t like my son was always seated on a chair to be learning! Infact it wasn’t just the “classroom” but our entire home and its premises that were used to run sessions. It wasn’t easy days but in retrospect it helped the therapists do their task with a more compliant child. They were flexible enough to give him some control on how a session would play out like he could say the order of the activities and the breaks. It is possible that not all ABA therapists are as accommodative and flexible to the way you want your child to be dealt with. We got lucky with our team of ABA therapists who were very loving and caring and that’s why I say this- ‘Our tryst with ABA’! An effective intervention is one that doesn’t use the one-size-fits-all appoach.
There are some concerns raised around how ABA tackles kids who stim (flapping of hands, spinning objects or other repetitive actions). We didn’t have to deal with this aspect as our child didn’t stim. However there was a point where my child’s obsession for a particular button-sized ladybug toy was hindering his ability to focus and when the therapists were trying their best to keep it away during the sessions with timers or ignored his repetitive talk about bugs, I did intervene and asked the team if we could indulge in his obsession instead, -basically acknowledge everything about the bug-talk and move on with the task. I was reading the book “Autism Breakthrough” by Raun K Kaufman at that time. This gentleman has been cured of his autism by the interventions used by his parents who later went on to develop the Son-Rise program. This program is for parents who want to learn how to manage their child’s autism. They believe that by indulging and truly enjoying what the child loves to do (even if it’s the most ridiculous thing) you will be able to find a way into the shell that your autistic child has created around himself and from there you can lead him out into the typical world. Basically, it focuses on building a relationship with your child. Their premise is that a child’s learning can take place only in a safe and fun place within the context of a social relationship. I realised that the more we indulged our son’s perseveration or obsessions the more he engaged with us, the more he communicated and eventually the obsession lasted for a lesser period of time. I think this was because he felt reassured that he was being heard and we took interest in what was important to him. In all autistic children some aspect of their social skills is not developed. If it is not developed naturally, to teach it would be a herculean task. So for those parents who don’t see eye-to-eye with ABA, I suggest looking up the Son-Rise program at https://autismtreatmentcenter.org/ as well.
Controversy or no controversy, I believe that it is not the means (ABA or the Son-Rise or Floor-Time or Play therapy) we use but it is how we execute it that matters most. Are you just going to be a bystander expecting the therapists to do their job and you do nothing beyond their sessions? Then you will also see that the progress is limited. The more actively you participate -time wise, emotion wise, information-wise; the more will be your returns.