Autism 911 and missing gaps

Five days of ABA: it's just a start.

A piece running on CNN this week details the 13-year-old Marissa Bilson’s autism and the family’s “transformation” after undergoing a 5-day intensive in-home ABA therapy program provided by Autism Partnership (and paid for by CNN, in exchange for taping the family).

As those of us who live with autism in their lives, the familiar scene of tantrums and repetitive behaviors strikes a chord. But the piece misses some key take aways.

Firstly, Marissa was diagnosed “as a toddler” as documented by CNN, but roamed without any boundaries or limitations around her home. She had free reign for her thirteen years – which of course severely impacted the family’s dynamics, from her parents to her two siblings. It was only recently, during the CNN-sponsored week-long therapy session, that Marissa underwent intensive ABA therapy during which time the therapist established ground-rules and initial performance incentives.

It is well documented that early therapeutic intervention plays a key role in helping build the tools for children with autism to interact more fluidly in mainstream society. But one must wonder, what kind of guidance did the family pursue over these years to inform the parent’s decision to “let her do whatever she wants”?

Secondly, there is no magic intervention that after five days miraculously produces a “normal” child where there once was a child with ASD. As a way of perceiving the world, those with autism can be guided to understand social rules, improve speech where there may be delays, helped to greater independence and reduced anxiety. But all of this is hard work, and the product of years of consistent and combined effort on the part of therapists, school personnel and – most importantly – the family.

The piece does note that now it’s the parent’s turn to “be in charge” and follow the ABA regimen, and that there has been improvements in behavior. Fantastic, the family is empowered now to help do their part in guiding their child. Beyond the 3-minute “human interest/feature” segment for television, this marks a beginning -- and only a beginning -- of what will need to be a concerted and consistent effort that involves family, school and therapeutic support.

For those with a younger child with autism, or suspected of having autism, securing a formal diagnosis and securing services early (often offered through public health and/or public education channels) is a step no family should ignore – and merely a step in the long road of autism support.

Brian Field is the co-founder of the Autism Support Network