Learn From My Mistakes 

Friday, September 14, 2012 Autism Speaks View Comments

This is a blog post by Marianne Sullivan, RN, MN, the Assistant Director of National Outreach and Resources at Autism Speaks, and the mother of an adult with autism.

My son Hunter is a 20-year-old adult with autism. From age two when he was first diagnosed with autism, his language development was extremely limited. This has continued throughout his life, so his inability to express his needs and feelings frequently leaves him deeply frustrated, which, in turn, gets expressed by challenging and aggressive behaviors.

Because of this, so many parts of his life have been negatively impacted; his education- teachers spent much of their time focused on managing difficult behaviors; finding the right physician to work with us-we weren't able to take his blood pressure until he was 11-years-old. Dental work was even more difficult; we had to admit him to a hospital and use general anesthesia to take care of his dental needs. We weren't able to take advantage of community recreational activities such as summer camps, after school programs, etc. Once we did enroll him for swimming lessons at a local health club, but that instructor immediately gave up and offered a refund.

Hunter's physical aggression resulted in physical injuries to others, so finding aides to work with him became nearly impossible. There were several severe episodes that resulted in the police using physical restraint in public. As a parent, these episodes left painful emotional scars.

Plain and simple, many mistakes were made because I didn't know what to do. On-the-fly behavior management backfired and the aggressions would escalate. Like any other parent, I would be in denial at times or minimize a situation. Not knowing what to do, or blaming others for their incompetence, compromised my ability to get the help that Hunter needed so desperately.

When Hunter was 16, we were told he must leave a school because of his physical aggressions. Overwhelmed by this, I had a sense of disbelief, especially since staff was trained as behavioral specialists. And before I could catch my breath, the school district and regional center wanted to place him in a residential program away from his community and family. My denial was confronted in a shocking, dramatic manner. No longer could I assume Hunter's behavior was because of the weather, poor sleep, or inability of his teachers to respond appropriately.

From that time forward, we have managed to get the right behavioral supports in place for Hunter. Behavior management will always be our focus, but he has made some remarkable gains by working with the expert staff at the Coryell Autism Center. Last year he was able to move to a new home in our community with Supportive Living Services, provided by the California Regional Center.

In many ways, I have learned a lot and clearly Hunter has benefited. When your child is experiencing challenging behaviors, seek out professional help immediately! I am sharing this hard-earned wisdom, so that you might be able to intervene faster with better outcomes for your child. Getting immediate help from the right professionals is essential! 

The new Autism Speaks Challenging Behavior Tool Kit offers practical support, information and resources to help you and your family manage difficult situations. It will assist and guide as you care for and support your child on the road to independence!

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