Autism: All in the Family (b5media Science & Health Channel Theme Day on mental health)

Mental health is the topic for this month’s b5media Science and Health Theme Day, as May is Mental Health Month. I have tended to be wary of discussing autism and mental health, as autism used to be considered childhood schizophrenia and misperceptions of autistic persons as “crazy” persist (which is not to say that you won’t find some good information about autism from the National Institute of Mental Health (NIMH) site). Autism is a lifelong developmental disability, is a neurological disorder.

I tend to shy away from discussing autism in conjunction with mental health because of the history of autism: Autism was once seen as a psychogenic disorder caused by the bad parenting of “refrigerator mothers,” and the work of the self-styled child development expert Bruno Bettelheim had more than a little to do with this. Indeed, research to be published in the May issue of Pediatrics suggests that, far from being “cold” parents who were “withdrawn” from their children, mothers of autistic children report being very close to their children—this is the certainly the case with me and Charlie, with whom my communication is closer than close. As reported in the May 9th Rochester Democrat & Chronicle:

Guillermo Montes at the Children’s Institute in Rochester and Dr. Jill Halterman at Golisano Children’s Hospital at Strong took data from the 2003 National Survey of Children’s Health, in which moms of kids ages 4 to 17 were surveyed. The study, published in the May edition of Pediatrics, said moms of kids with autism also were more likely to report that they had better coping skills.

However, those same moms also said they had more stress and had poor or fair mental health when compared with mothers of non-autistic children.

“This is good news for mothers of children with autism,” said Montes in a press release. “These mothers show remarkable resilience in the context of high stress level and poorer mental health.”

More stress but “better coping skills”: This suggests to me that, while we mothers of autistic and disabled children have a bit more to contend with than many mothers, we have learned—-through experience, through necessity—-to deal with the hand we have been given, so to speak. Our children are in front of us and need us, and we have to help them now.

Another recent research study suggests that family members of autistic children—specifically, parents and sibling who do not have autism—”may have very subtle communication impairments or behavioral tendencies that would be considered autistic only in their most severe forms,” as noted in Physorg post (May 9th) about a study in the April issue of the American Journal of Psychiatry. If one child in a family is autistic, there is a 10 percent chance that a sibling will also have autism.

“Although we once believed you either had this condition or you didn’t, we now know that there’s a continuous distribution of autism symptoms from very mild to very severe,” [John N. Constantino[, M.D., associate professor of psychiatry and pediatrics at Washington University School of Medicine] says.

That means in families where a child is autistic, parents and unaffected siblings may have very subtle communication impairments or behavioral tendencies that would be considered autistic only in their most severe forms. Those traits may indicate genetic tendencies that contribute to autism and now can be measured with a diagnostic interview tool called the Social Responsiveness Scale (SRS), which Constantino developed with his colleague Richard D. Todd, Ph.D., M.D., at Washington University.

Using the SRS to gather data about both children with autism and their unaffected parents and siblings allowed the researchers to take a more quantitative approach to find subtle symptoms of autism that aggregate in families. In all, they used the SRS to study members of 99 families who were part of the Autism Genetic Resource Exchange (AGRE).

“We characterized everyone using the quantitative measures that the Social Responsiveness Scale provides,” Constantino explains. “With the SRS, we looked not just at whether a person has autism but more systematically at the degree of autistic impairment. Then we analyzed their genetic material and found significant linkage to these symptoms on regions of chromosomes 11 and 17.”

Older survey methods also had flagged those regions of DNA, but those studies used samples more than three times larger than this study. Constantino and [Daniel H. ]Geschwind, M.D., Ph.D., and neuropsychiatric and genetics researchers at UCLA,] believe the fact that they identified the same areas of DNA means that their quantitative method can find genes related to autism and that if used in bigger samples, it may be able isolate other suspicious regions of DNA that studies using traditional methods can’t find.

Constantino notes that research into the genetics of autism will find that many genes are involved, and that “scientists may need to find several of them before they begin to understand how genetic variations actually lead to the disorder.”

I find the notion that non-autistic family members of autistic children may have “very subtle communication impairments or behavioral tendencies that would be considered autistic only in their most severe forms” intriguing, as if to say that some things that seem particularly to be features of Charlie’s being autistic may occur in Jim and me, to a much lesser degree (difficulties to attend; a desire for order). Because I do surely have to say: Thanks to Charlie, I have indeed learned how cope much better, how to grapple and manage my own stress, how to stand up for what I believe is true in the face of overwhelming no’s. (As in, “he can’t do this”; “we aren’t seeing him do that in the classroom”; “he just does not do that.”) Life raising an autistic child presents one with a host of worries, but also—-just as Hope was the last to fly out from the jar that Pandora had opened—the means, the tools, to carry on.

I just have to see my boy—my child—clomping down the bus stairs and smiling and I know, things will be all right. And that I am proud to say, he’s a lot like me.