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Chantal Sicile-Kira


Autism Awareness Every Day: Preparing for Real Life

Autism awareness and the transition to adulthood.

Jeremy and Chantal Sicile-Kira

Often, when parents and educators discuss transitions, we talk about how challenging these transitions are for our loved ones on the autism spectrum. Rarely do we acknowledge that transitions are difficult for us as well.

The parent-child relationship is one of the most enduring social ties that human beings have. Over time, as most neurotypical child matures, the relationship shifts and progresses and eventually the parent stops being responsible for them and their actions. Not so for many parents of children on the autism spectrum.

Research shows that mothers of children with an autism spectrum disorder (ASD) are worrying across their child’s lifespan, particularly at that time of transition from public education services, and worrying more than other families of young adults with disabilities. Mothers of teens and adults on the spectrum in particular experience chronic stress comparable to that of soldiers in combat, struggling with frequent fatigue and work interruptions. Researchers found that a hormone associated with stress was extremely low in these moms, consistent with people experiencing chronic stress. Ongoing stresses include that of managing problematic behaviors, and dealing with the losses of expectations associated with having a child whose development is not neurotypical.

Having an adult child with autism creates more financial stress for families. Parents of children on the spectrum tend to have nearly one-third less income than those with typically developing children. These families of children with ASD tend to only have one breadwinner because mothers of children with autism are less likely to work and when they are employed, these moms tend to earn less than others.

As parents, we are facing transitions in other areas of our lives. Some of us are having to care for our elderly parents. For those whose children are still living at home and requiring 24/7 support, it can feel like we spend our life sandwiched in between caring for our parents and caring for our children. Some of us are going through our own midlife crisis. Yet even though we need some space to figure things out about ourselves, we find our children need us more than ever.

It is important to note that the stress we feel as parents is not generated by our adult child with autism, but rather from the failings of the systems in place that are supposedly there to help us. There are caring people working in the systems, yet often the lack of options and foresight and inability to really plan ahead or provide options for our loved ones is often accepted as normal or acceptable by the systems in place.

Recently I asked Temple Grandin Ph.D. to write the foreword to A Full Life With Autism, the book I co-authored with my son, Jeremy. Temple is the subject of the Emmy-award winning HBO documentary Temple Grandin, a professor at Colorado State University, bestselling author, consultant to the livestock industry on animal behavior. Temple is also a very successful person with high functioning autism and in preparation for an upcoming Q & A, on Autism College, I asked Temple her thoughts on reaching adulthood:

"One of the most difficult times for many individuals on the spectrum is making the transition into adulthood. This is an area that is sadly neglected despite the fact that it is hugely important. I have had teachers and parents tell me many sad stories where a young adult loses a job or drops out of college because they were not prepared for a world away from home."

As in all times of change, preparation is key.

In my next post I'll share some tips on how parents can prepare for their child's transition out of school services and into adult life.