Beyond THE FUTURE: Kristina Chew at Autism Vox

Thank goodness for RSS feeds because Kristina Chew at Autism Vox is one prolific blogger. Also a college professor and mom to 11-year-old Charlie—a charming, sushi-loving boy I enjoy cheering on every time I read about his many triumphs—Kristina provides ongoing, fascinating insights into her life with a dynamic child with severe autism.

In a Good Morning America feature that ran earlier this week, Kristina was interviewed regarding her “controversial” choice to accept Charlie as he is. Some parents, Kristina notes, do not believe vaccines cause autism and prefer to concentrate on helping their children and advocating for others rather than placing blame. While I enjoyed seeing Kristina in the interview, I was miffed at the GMA stance (voiced by Diane Sawyer at the end of the piece) that Kristina’s point of view may simply be an out-of-touch option for coping with heartbreak.

All of Kristina’s writings are very practical and her points are based on scientific studies rather than celebrity-fueled emotions, but the interview sections that were aired did not cover any of this. I have no trouble with the longer schedule of vaccinations in babies and young children proposed by those in the Green Vaccine movement, but I’m very fearful the simmering anti-vaccine frenzy is already resulting in a return of various awful diseases such as measles, diseases that children in this century just should not have to worry about or endure.

Rather than representing a “controversial” point of view in the face of calls for green vaccines and autism cures, Kristina presents a calm call to attention. What we need now, she asserts, are programs and services designed to help parents of children with special needs, help these children enjoy and reach their potential in school, and provide adults with autism and other special needs safe living arrangements with proper care as well as occupational opportunities that challenge their abilities and contribute to their overall well-being. That all makes perfect sense to me.

Kristina has been writing more lately about her concerns regarding Charlie’s future, when her boy has grown into an adult and she and Charlie’s dad are no longer able to care for him. I wish the folks at Good Morning America had opted to emphasize her overall message of the dire need for more attention and resources directed at the lack of services for adults with autism in most states as well as the lack of training in our schools for teachers and other caregivers. Kristina advocates for caregivers who are “properly trained and supervised,” for an emphasis on the proper use of “non-violent methods” to keep a child and those around him safe; for increased understanding of the need to understand why certain kids might get upset and to work with them “with dignity and compassion” so injuries to any child’s psyche or person can be completely avoided. I found this late 2007 Autism Vox post especially revealing:

“Teachers used a basket hold frequently when Charlie headbanged and they were trying to stop more headbanging—but their efforts often only made things worse. The teachers had been insufficiently trained in this sort of crisis management, and had little support from anyone with any expertise. There are simply better ways to help a child at such moments; best of all is to teach a child when he or she is not upset about dealing with feelings of anxiety and frustration.

“Strategies that Charlie’s teachers now use [include] teaching him to ask for breaks before he gets upset and knowing where there’s a mat in the classroom that he gets out on his own to lie down on when he needs to. The teachers themselves know Charlie and how he communicates [my emphasis; this is so, so important] very well from careful and thoughtful interactions. They can sense him getting upset, and accordingly change the pace of how they are teaching. They remind him that he can ask for a break (there is a flashcard on his desk that he can point to). These teaching methods communicate some important messages to Charlie: (1) We believe—we know—that he can learn ways to let us know how he feels; (2) We’re not afraid of him getting angry or mad or crying out; we know he knows how to help himself; (3) We can help him do this in ways that are minimally physical and maintain his dignity as much as possible.

“I’ve come to think that the basket hold and other restraint procedures are overused because of fear. There is fear that ‘I won’t be able to handle this large child;’ there are wishes that a child was a young toddler and something like regret gets communicated to the child that he or she has gotten bigger. To me, this is an unfortunate message: Of course our kids get bigger. Of course they grow up and become pre-adolescents, teenagers, and adults. I understand why people have their fears but I think these can lead to mistaken practices like physical restraints and to the overuse of physical restraints.

“Steady and patient teaching—…always with an emphasis on flexibility, on building an interpersonal relationship between Charlie and the therapist, and on the belief that he can learn—has taught Charlie to communicate his anxieties and worries more and more.”

“Acceptance, to me, is the beginning of hope,” Kristina is quoted as saying at the end of the GMA interview. Why acceptance, understanding, and compassion are considered controversial, I’ll never know. Maybe they simply aren’t trendy enough.

Photo of “Merrill’s Autism Service Dog, Hunter” © Tihea on Flickr