When did it become passé for parents to be the focus of their child’s treatment? While it seems like such a long time ago since Dr. Ivar Lovaas began his ground breaking work, but it really wasn’t. When he was treating children at his clinic at UCLA and the children were making good progress, I’m sure he and his staff were very pleased. The issue was that the parents were not so thrilled. Why? Because their children with autism would be doing well in their treatment at the clinic and then coming home and showing little of the skills that they were acquiring in treatment.
What was the solution?
Dr. Lovaas moved the treatment into the children’s homes and began training the parents to work with their children and be part of the treatment team. Eventually, parents were so well trained that they became the lead therapists. This created a total therapeutic environment…every waking hour for their learners were opportunities to shape up appropriate behavior and in turn reduce inappropriate behavior.
I have had parents say to me, “I don’t want to be his therapist. I just want to be his mom (or dad).” I have heard this enough times that I feel comfortable saying, “I get it.” With that said, I have to stress the very plain fact that the children I have worked with over the last 20 years that achieved a best outcome only achieved so much because their parents were immersed in the treatment, were equal partners in the decision making and the focus was not on acquiring skills for school or according to some pre-made plan, rather the focus was on how to teach children how to engage with their parents and siblings and become integral parts of their families and well rounded individuals.
Can a therapist teach a child to engage with their siblings and parents? Maybe.
Really, the therapist can only teach the skills that the child would need in the context of some specific engagement. For example, why do therapists teach children to answer WH questions? Well…this is a critical prerequisite to having more complex social interactions. Now, the therapist leaves the house or the child leaves the clinic or school (wherever they are receiving treatment) and then the parents are now “not in the loop” and the only person the child practices answering WH questions with is the therapist. Who do you think is going to get the best responses? Not the parents.
I know that we can inform parents that their son or daughter is working on “WH questions” via a communication log, or even by telling them. Unfortunately, there are little to no specifics regarding what questions, what responses, how to teach, how to correct errors, how to shape, how to provide differential reinforcement, how to use both response and stimulus generalization to avoid rote responses etc. Parents only learn these skills when they are immersed in the treatment and are equal partners in the decision making and learn how to engage their learners in therapy. Through repetition and many sessions with their children, parents get into a mode where they are automatically evoking appropriate behaviors and extinguishing behaviors that do not help the child interact appropriately.
Look, I know that we all have a lot on our plates. And if you are a parent of a child with autism, you have a plate that is over flowing! Again, I get it. The bottom line is this, it is up to the professionals working with your children to bring you into the fold and not shut you out. YOU are the critical deciding factor in your child’s success, not the consultant or the therapists. Because, when we are not there…there is only you with your child and I want you to be confident that if you have to go to the store, you can because you have the tools to manage any problem behavior that occurs, if you are taking all of your children to the playground, you have the tools to shape up appropriate social interactions between your child with autism and their peers, or if you just want to sit for five minutes and take a breather, you know what your child can do on their own to keep themselves occupied so you CAN sit for five minutes!
I feel like I can go on and on. I think you get the point that in the same way Dr. Lovaas recognized that it was the parents who had to be partners in the treatment of their children with autism; it is time once again for all professionals to start thinking the same way.
To the professionals that go the extra mile to work with parents and teach them what they need to know to help their children…thank you!
To the parents who trust us to provide appropriate education and treatment to their children with autism…I am constantly in awe of what you can accomplish over the course of the day! THANK YOU FOR YOUR TRUST!