This week, as I've been using Autism Society of America's magazine, Autism Advocate, for inspiration on my series of parental support. The most current issue, on my lap at the moment of typing, is mostly about Applied Behavioral Analysis (ABA), but what really caught my eye was quotes and/or articles about parental support. It's hard for me think about the benefits of ABA as the therapy was simply not available in my area when my son might have benefited from the therapy as an early intervention. My guy, C1, is ten now and ABA is still not widely accessible in Central Michigan, a mostly rural area.
So no, I'm not writing about ABA today. Sigh. I'm focusing on a quote that the authors Edward G Carr, Doreen GranPeesheh and Lee Grossman include in their article "The Future of Applied Behavior Analysis in Autism Spectrum Disorder." They are citing M.J. Weis, who published an article on parental support in the journal Autism in 2002. Here it is:
"Mothers of children with ASD perceive less availability of emotional support and friendships than both mothers of typically developing children and children with mental retardation."
In critiquing the use of the quote, two factors jump out at me. The first is the word "perceive". Does that mean that mothers may have more emotional support than they actually realize, or are their perceptions accurate? The second factor that jumps out at me is the year 2002.
A lot of developments have occurred since 2002. There has been an increasing amount of awareness of autism with more people recognizing the disorder than ever before. Also, there are more opportunities offered to families who have a family member with ASD, than there was even six years ago.
In six years, more opportunities have become available even in an area as rural and somewhat remote from big cities as mine. No, we don't have ABA, but we do have a summer camp for children with Asperger's Syndrome that began the summer of 2007 and a support group for parents who have children with autism that began four or five years ago. A small group of us are also in the process of getting an ASA chapter up and running. So yes, there is support on the community level. Whether or not there is support or not on an individual level is completely relative. It depends on the circumstances surrounding each family.
Delving a little deeper, it doesn't surprise me that mothers of children with mental retardation might perceive more support because people with cognitive impairments, in many cases, have a set of social skills that make him or her easier to understand on a social level. People with autism have social impairments and, as a result, can seem difficult to reach or understand.
While mother of a child with autism, may understand her child on a deep level, a person on the outside of that two-person circle may have trouble looking beneath the surface of stims, unusual behavior, and the avoidance of eye contact. In short, it's unfortunate, but if a friend or family member feels intimidated by the social behaviors of the child with ASD, they may become less socially and emotionally available to the mother. It helps if a mother tries to bridge the gap between the child with ASD and those people around her, but sometimes she is so overwhelmed with raising the child that she doesn't have the time and energy to build the bridge.
Also, as autism is a spectrum disorder, it's possible that the level of support may be altered, for example, by whether or not the child is severely impaired and also the amount of social skills the parent, who may or may not have a form of autism or may or may not be dealing with a personal issue such as depression, has. A lot of factors that are too numerous to mention specifially can influence the level of support for mothers and/or fathers (marital status is a big one) of children with ASD. Even though Weis had the words today's featured quote published in 2002, I can see that those words can ring true for many moms and dads. What do you think?