Parents of children with Autism Spectrum Disorder (ASD) get a rough deal. The only people who are really on our side are other parents of children with ASD, and even then there are opposing views on how we should help our children. Schools don't want our kids. Just try getting your child with ASD into a government school. Family members often point the finger at you because you seemingly can't discipline your child, and adults with ASD criticise you for trying to get help for your child because they say ASD is part of who your child is and you shouldn't try to change that.
It's a case of picking who you want to offend the least. Any decision you make is going to get someone's back up. The reality is that we as parents and families of children with ASD are also affected by the condition. People who have ASD don't experience it in a vacuum. Its impact is concentric, starting in the middle with the person with ASD. The first shock wave hits the parents, then the siblings, the grandparents, extended family, and friends. On the outer circles are schools, sports clubs, and medical facilities, followed by the general public. The least affected, with the smallest ripples, are the government policies and policy makers who currently don't serve the needs of our kids on the autism spectrum.
So what is a parent to do? Who should we listen to and how do we know what is best in terms of support for our children? Sooner or later, as ASD parents, we all come to the same realisation: we will be dead one day and we will no longer be there for our children with ASD. No longer there to fight their cause, no longer there to protect them, no longer there to be their voice, and no longer there to provide for them. All too soon our children grow up and, unless we have considerable resources to pay for long-term care for our children until the end of their natural lives, our most reasonable plan of action needs to be equipping our children with independence.
Nic was really doing well after 1.5 years of behavioral support, also known as Applied Behavioral Analysis, or ABA. He had moved from being a non-verbal, difficult-to-manage child whose constant stims blocked any form of learning. From stimming the majority of the day, he progressed to a child who was talking in 10-word sentences and reading grade 1 books. He was attending a mainstream preschool and participating in class with his peers.
As with most children with ASD, as we head towards new goals both socially and developmentally, our children resist. Change is hard and giving up what is known and comfortable is never attractive. Nic was at this stage and his parents felt the program wasn't a good fit for him, so they decided to move Nic to a special needs school. The school was a welcoming place where the children could set their own pace.
I saw Nic incidentally at the new school a year later while attending a meeting. Nic had lost all his speech. He was sitting at a desk blankly staring ahead. He didn't recognise me and was no longer reading. My heart broke for him as he was neither happy nor achieving his full capacity. Now while some may think this is all he was capable of and we shouldn't change who he really is, having worked with children with ASD for many years, this is not the case. All people with ASD are capable of learning.
Consider Ravi. He started off much the same as Nic: non-verbal, strong behaviors, high stims, and low learning. His family stuck with the ABA program as they saw change. They trusted our experience and expertise. Ravi is now in grade 2 at a mainstream school. He leads the class in maths and reading and has an insatiable desire to learn. He loves doing class presentations and, truth be told, we have to ask him to stop talking at times. His affection is real and warms our hearts. Now while Ravi will always have social challenges and behavioral quirks, the difference between his path ahead and Nic's is sadly worlds apart.
So what is behavioral support? It is an evidence-informed approach for ASD which works on trying to bridge the developmental delays those with the condition have. Quite often, due to limited communication skills, children with ASD have strong behaviors because they are frustrated. Once we assist children in developing speech, we see a marked drop in tantrums and outbursts.
Behavioral support, like many long-standing approaches, has some rather rough roots, but it is not what it was in the 1960s at its conception, when children were physically punished and harmful methods were used. The lack of awareness of what ABA is today can prevent parents from pursuing a tried and tested method to help their children progress.
That being said, however, there are low quality ABA services in South Africa. People pose as behavioral professionals while working without an approved ABA curriculum and without supervision. I would caution all parents to do a thorough investigation before embarking on an ABA program, as not all support plans are equal. Ask to see relevant credentials, not only facilitator or consultant wording. Be wary of providers who are going solo, as ABA involves multiple instructors per child and supervision at all levels.
Also be cautious of ABA programs which do not include social skills, attention to sensory issues, self-regulation of behavior, or developing communication skills. Attention must always be given to understanding why a child with ASD is doing what they are doing. It is never a case of the child just being naughty.
Parents often say, "You and your team have changed my child's life." I have to reply that the child has changed our lives too, as each one is unique and each one has something to offer our world.