Empowering Parents

Parents of individuals with autism are the single most powerful agents of change in their lives. Unfortunately, many professionals take the power away from parents rather than empowering them. When children are first diagnosed parents are many times stricken with grief at the loss of what they hoped was going to be a “normal” and “perfect” child. They receive the diagnosis and then are shoved into a complicated network of doctors, therapists, OTs, SLPs, schools and other related services. It is all very confusing for anyone who is new to the system, not to mention someone (the parents) who has just been informed their child has autism which is a life-long neurological disorder with unknown causes, no known cure and a plethora of treatment options.

Parents are many times at risk for being taken advantage of because professionals who offer services claim their treatments have the best outcomes but many times at a very large out of pocket cost. Many families are unable to afford the services of these individuals and therefore their child may go untreated. Some families may assume that treatment can only be administered by a professional to be effective so when they are placed on a waiting list they child ends up waiting for intervention. When a child becomes eligible for services through their school at age 3, many times children are sent off to school and there is little to no follow up at home with the parents. Again families are many times under the assumption that their child is receiving all the help they need at school from the professionals because they haven’t been told anything differently.

I’ve been thinking about this dilemma for a while now and reading up in the literature about parent involvement in treatment and have come to the conclusion that every family upon diagnosis should be given an intensive workshop which covers autism, treatment, what services are available and how to access them, and hands-on training regarding how to best support the language and social development of their child. I’m not just talking about a 2-hour overview. What I’m proposing is an intensive, interactive class series which involves assessments, education and feedback sessions. There are many places around the country which provide these types of services, but there are far to few of them. In an ideal world, these services would be provided by the school system upon a child entering the school system or by the Department of Developmental Disabilities.

The is research which supports parent training and empowerment in regards to raising and working with their child with disabilities; it leads to positive outcomes in the child. If parents feel helpless and unsupported they are not likely to engage with their child. The less a child is engaged, the less they’re going to develop. It seems to me that providing these intensive services up front would help families, help children and help the system as a whole because the power would finally be put where it belongs: in the hands of the parents!! There would be fewer people down the road who are more severely impacted solely because they were not provided intensive services from the get go.

Something in the service delivery model needs to change, and that change needs to start with how parents are treated upon receiving the initial autism diagnosis for their child. When parents are finally empowered to be a part of the solution for their child by being given all the necessary information and proper training, then I believe we will start to see drastic changes on a systemic level. Parents are vital components in a child’s life. When they are given the tools to help their children, only good things can happen.