The Real Housewives of Autism
Giving Hope and Help to Families of Children with Autism Spectrum Disorders
Posted Jun 12, 2012
I often have the privilege of meeting parents of children with autism spectrum disorders through my research, from personal contacts (“Do you mind talking to my sister who has a son recently diagnosed?), and at professional conferences. After more than 30 years in this field I can say with some authority that the parents of these children are extraordinary people but at the same time represent an incredibly diverse group. On one end of the parenting spectrum I see what I call “ȕber parents.” These are mothers (and sometimes fathers – divorce rates are much higher in this group) who seem to handle the trials and tribulations of parenting a challenging child with incredible grace and determination. At the same time, many of these mothers are quite conversant in the latest autism research (“Have you seen the article in the recent issue of the Journal of the American Medical Association on the SHANK3 gene?”), plan activities to raise autism awareness (“I organized a 5K race and we raised $7,500.”), and sometimes even contribute to the field by presenting their views and stories at regional and national conferences. It’s not that these mothers do not struggle on a day-to-day basis. However, for whatever reason they have the confidence and emotional reserves to persist in the face of extremely daunting obstacles (e.g., their child screaming in public, battles with schools for appropriate treatment, etc.).
On the other end of this parenting spectrum I also see mothers who struggle just to get to the end of the day. They labor to get their child through all of the necessary daily activities without major meltdowns and at the same time feel bombarded by people giving them advice (“Why don’t you just discipline your child?”) and their own thoughts about their abilities as a parent and their future. Often even close friends and relatives become part of the problem and do not provide the social support they need. A mother-in-law criticizes a grandson’s diet not understanding how picky an eater he is and how difficult mealtimes are each and every day. A spouse undermines an attempt to teach their son to go to bed without crying by letting him fall asleep on the floor in front of the TV. It makes sense that research indicates that mothers of children with autism have stress levels that are similar to combat war veterans and parents who have a child with cancer!
We just completed a series of major studies of this latter group of parents – those who have considerable difficulty helping their child with autism. Our first study was conducted in both Florida and New York and targeted families who had a child with severe behavior problems such as aggression and self-injury (Durand, Hieneman, Clarke, Wang, & Rinaldi, in press). These parents often expressed thinking that their lives were out of their control, that other people judged them negatively, and that they sometimes doubted their own parenting abilities. In our study we assigned families to one of two groups. In one group, parents were taught how to help their child behave better at home and out in the community. In the second group we taught them the same parenting skills but added “optimism training.” We taught them how to be aware of their interfering thoughts (e.g., “He’s screaming at the store and I know other people think I’m a bad mother.”) and how to interrupt or replace them (e.g., “He’s screaming but I know how to handle it and I have a plan.”). We found that this “optimistic parenting” helped them improve their child’s behavior. Additional research (presented at the 2012 annual meeting of the Applied Behavior Analysis International conference in Seattle) is finding that these parents are better able to get their children to engage in sometimes unpleasant tasks and routines and this helps the “optimistic” parents feel less stress and more in control.
My new book (Optimistic parenting: Hope and help for you and your challenging child) describes how parents can carry out these techniques on their own and help them feel better about themselves and their child. Our goal is to help the “real housewives of autism” lead better and more satisfying lives.
Durand, V. M., Hieneman, M., Clarke, S., Wang, M., & Rinaldi, M. (in press). Positive family intervention for severe challenging behavior I: A multi-site randomized clinical trial. Journal of Positive Behavior Interventions.