16 Years of ABA Come to an End

By Sarah Ziegel

Our youngest son, Marcus has just finished at mainstream primary school where he has been for the past 5 years with 1:1 ABA support. Prior to that, he started ABA at just 2 years old before he even got an official diagnosis. So that’s 7 years clocked up for him alone.

His older three brothers all did full time (35 – 40 hrs. a week) ABA from their diagnoses. The twins, now aged 18, started at just three years old. Their younger brother, Hector, was six months old at the time. Two years later, he was also diagnosed and started ABA too.

For many years , I managed three full time programmes concurrently. A neat sentence to write which conceals eight very long years of incredibly hard work. It was hard work for me to manage it all. We had three tribunals to win funding along the way. It was hard to recruit tutors over the years – the hardest bit of any programme. It was hard to have people constantly in our house, in our space and it was hard to find the funding to pay for it all. At times, we had two lodgers living with us to fund it but that shows just how much we believed in it.

And, if it was hard work for us, it was equally hard work for our boys who had to learn to speak and to do so many daily activities that they were previously unable to do. Sometimes, simple things like getting dressed could take hours to teach. The boys had to get used to having someone who was not ‘Mummy’ with them for hours at a time. Sometimes, I felt compelled to let tutors go if I felt they were not compatible with my children. After all, the boys couldn’t express in words if they were not happy but their behaviour displayed their thoughts at times.

I needed to be an advocate for them in so many ways. Choosing the tutors, choosing schools and nurseries and managing it all. It was a privilege in many ways to be allowed that level of control, to have a say in who I chose for my children. I was recently told by another mother that I have a reputation for only employing really good tutors. I am very proud of that, even if at times, it meant we had no tutors while I hunted for replacements. I feel my boys always deserve the best I can do for them.

ABA worked best with people who had an open mind. Those who didn’t necessarily follow all the rules. The ones who had the imagination to realise that a great social interaction in the playground between one of the boys and an unknown child took priority over learning to read. After all, those skills are the ones we most want for our children. Social inclusion is vital and needs to start at an early age. I have written before about how, when the twins were diagnosed at age three, my wish for my boys one day would be for them to be able to go into a pub with friends and order a drink. Thomas achieved that this year. I did not wish for academic success, that was too tall an order but I did wish for them to be happy in social settings and we have managed that over and above my expectations.

It also worked best when everything taught was meaningful. Why would a child wish to know the names of kitchen items? If they wanted to know the names of every Thomas the Tank engine, that was what they learnt to begin with. In doing so, they learnt that language benefited them, it was worth learning. After a few years, we could teach them the labels for less preferred things, like items of clothing, still meaningful and useful but not quite so desired.

Without ABA, my boys would not be the socially able, happy and positive boys (or nearly men) that they are today. We were helped by the fact that we found a fantastic, inclusive primary school where they were allowed to fully integrate. They learnt academics but most importantly, they learnt to mix in mainstream society which has set them up for life.

I have never counted how many tutors we had over the years but there are many who have left an imprint on all our hearts, who we will forever be grateful to. Those who truly cared about our boys and their possibilities. Many of them we are still in regular contact with, many of them still visit the boys and the boys are so glad to see them again. They miss them still, which just proves how they felt those people were their ‘friends’ and not just tutors. We count those special tutors as friends too. In many ways they are like a second family for our boys.

Do I regret any of it? No. I just wish there had been more help in finding and recruiting and training tutors. I also wish that there did not need to be the battles that also accompany running programmes. The unnecessary tribunals. For those who cannot afford to run a programme themselves for the time it takes to get to tribunal, life is hugely unjust and unfair.

We have living proof in all our boys of how life changing ABA was for them all. Happily, we are not part of a control study which might show how they would be without having had the benefit of it. I will never stop saying how important early intervention is and how we, as parents, should be allowed the choice to do therapies such as ABA.

Sarah Ziegel is a nurse and mother of four children with autism. She and her husband live near Richmond, Surrey, England.

You can follow Sarah’s blog at https://sarahjziegel.wordpress.com/blog

Reprinted from https://sarahjziegel.wordpress.com/2017/07/23/16-years-of-aba-has-come-to-an-end/ (C) Sarah Ziegel

Citation for this article:

Ziegel, S. (2017). 16 Years of ABA Come to an End. Science in Autism Treatment, 14(4), 3-4.