A Parent Reflects on Their Child’s ABA Journey: Part 2

Diagnosis

Our daughter received a diagnosis of autism spectrum disorder and developmental delay shortly after she turned 2 years old.

The diagnosing doctor was not a developmental specialist but was a well-known and highly regarded general paediatrician. Notwithstanding this, he used functioning labels and didn’t think that children with a high IQ could be considered autistic. He noted that some children can “grow out” of autism, although “many still have problems”. He recommended going doing two years of applied behaviour analysis (“ABA”) at an intensity of 20 hours per week.

Information session at an ABA centre

In December 2015, my husband and I attended an information session at an ABA centre. At that session we were shown a very old video of two children, both of whom did ABA, one of whom “recovered” from autism, the other who “remained” autistic and largely non-verbal.

The presenters said it is highly variable who will “recover” but that intensive early intervention is the only evidenced based therapy that gives children a chance at recovering. And even if they don’t “recover”, they will be far better off doing ABA therapy.

They said the 20 hours is a “therapeutic dose”, and whilst it is expensive, “it is only 2 years of your life” and after that period, some children need no therapy.

False and misleading statements were made during the session, including:

• “We have 100% success rate for toilet training.” They did not have this success rate.
• “There is no excuse to be violent or to not to be toilet trained.” The implication was that children will not be violent and be toilet trained if they do ABA, although we knew children who spent years at the centre who were both violent and not toilet trained.
• “Get them while they are young and before they develop bad behaviours.” The implication was that autistic behaviour is bad behaviour.
• “You have a small window of time.” This statement put pressure on families to make immediate decisions about ABA.
• “I deal with adults who are not toilet trained and who are violent. Trust me, you don’t want your child to turn out like that.”
• “You may think this is too hard for your family. But we tell you what you need to do, not what you are capable of doing.”
• “Be careful of the neurodiversity movement. They are high functioning adults. They don’t deal with kids – or adults – who are violent and aren’t toilet trained like we do.”
• “ABA therapy has 40 years of research to support it. It is the only proven treatment method.”
• “We have highly trained specialists.” This statement may be true, but most of the therapy is provided by unqualified “therapy assistants” who have done a very simple 3-day ABA course.

Experience at this ABA centre

Very early on, it became apparent that the staff largely comprised of young, inexperienced staff with very simplistic ideas about behaviour, child rearing and development. Notwithstanding this, many parents were very scared and concerned and did what the therapists said, although they frequently had to solve “developmental” problems themselves and remained very concerned about the therapy and their child’s development.

“Parents were encouraged to become therapists themselves and to be ‘therapists all the time’. There was no consideration or acknowledgement that this approach could be damaging developmentally to children or impact the family wellbeing.”

In fact, if the family’s wellbeing was impacted, programs were adjusted to teach the child to “comply” with what the family wanted. In other words, the children were always seen as the problem to “fix”.

Questionable practices were utilised. “Extinction” (making the child scream and scream until they complied with what the therapist wanted, often in developmentally inappropriate ways) was almost a prerequisite to engaging with children. For example, our 2.5-year-old daughter was expected to colour in and play with toys she wasn’t interested in for the entire 2-hour clinic meeting we would attend. When she started tantruming 1.5 hours into the meeting, our senior behaviour therapist (someone with 2 years of ABA and no child developmental experience) told us we had to “extinguish” that behaviour.

Inappropriate rewards were extensively used, for example, chocolate, ice blocks, lollies, were used in every session, with up to 10 sessions done per week.

Negligent advice was provided. For example, our program supervisor said to stop our daughter repetitively watching Peppa Pig as it was a “rigid behaviour”. In fact, this advice was antithetical to the that of speech therapists since Peppa Pig was a way in which our daughter was trying to learn to communicate. Such repetitive viewing is now known to be an effective method for some children to learn verbal communication.

Stims were interfered with and developmentally inappropriate programs were implemented (for example, the expectation to draw images at 2.5 years old). Despite claims of a “highly personalised program”, when we compared our daughter’s program to programs other families were given, most of them were almost identical, some children just went through the programs faster than others.

The program supervisor didn’t understand the purpose of some of the programs. For example, there was a matching program of related items (such as pen to paper). In speech therapy, such matching is to aid communication by linking related concepts. Our program supervisor (who had a BCBA qualification) said it was to ensure our daughter wouldn’t draw on the table, showing a basic misunderstanding of the purpose underlying activities.

Lastly, there was very little consideration of the child’s rights. When our daughter was clearly exhausted and dazing out, the program supervisor recommended clapping in front of her face.

Experience at another ABA centre

Eventually we moved to another ABA provider in because I found the therapists’ explanations at the first ABA centre unsatisfactory.

Our daughter seemed to initially do well at this second provider, probably after the break, but that ostensible “progress” unwound when she began preschool. When our new program supervisor visited our daughter’s preschool she came back and said, “I didn’t realise what normal children are like. They are so far ahead in terms of speech and play”.

For months we were prescribed behaviour management plan after behaviour management of plan, wasted tens of thousands of dollars with no skills learnt, and experienced an unacceptable and extreme level of stress on our child and our family. This program supervisor seemed very clearly out of her depth.

At the end of 2017, we changed to a new program supervisor who had worked extensively with speech therapists and occupational therapists, and we cut therapy to around 6 hours per week.

Our daughter’s behaviour immediately improved, and our supervisor asked what we are doing that led to this improvement. I replied that we had “reduced therapy”.

Despite being a BCBA, this program supervisor quickly abandoned traditional ABA principles with my permission. She allowed my daughter to stim and put in place flexible and developmentally appropriate programs with significant input from me. She asked about strengths and considered how we could include those in our sessions. She drew on her general and extended experience working closely with speech and occupational therapists, and had a strong intuition with young children. In fact, when hiring therapists, she advised against highly experienced ABA therapists and said people with a lot of experience nannying usually do better.

I would consider this program supervisor an outlier, and someone who did very well despite her BCBA qualifications, not because of them.

Despite the positives of this individual program supervisor, at both ABA Centres, we were never:

• told to reduce therapy, even when it clearly wasn’t working (in fact, we were encouraged to do more therapy when things weren’t working);
• referred to any advocacy organisations to help navigate inclusion in everyday life (in fact, our daughter was often seen as a problem to fix rather than someone to be included for how she is);
• consulted about the negative effects the therapy was having on our quality of life;
• told about the concept of inclusion and citizenship (rather, we were told that they would help teach our kids skills they needed to “fit in” to society), or
• told to contact autistic adults (we were instead actively told to be wary of them).