Christina Adams says when her son Jonah's diagnosis was confirmed around the time of his third birthday, her life changed forever. In an instant she was transformed from the mother of a bright but somewhat "different" little boy into the mother of a child with autism.
"It is a terrifying, horrific time when you realize that your life is never going to be the same again," she tells WebMD. "But it is also a watershed moment when your love for your child becomes more than you ever dreamed it could be."
New research into the coping skills of mothers of autistic children confirms that they are more likely to report "poor or fair" emotional health and mental health than other moms. But they are also more likely to show "remarkable strengths," the study's lead researcher tells WebMD.
The findings come from a nationally representative survey of almost 62,000 mothers of school-aged children, including 364 mothers of children with autism.
Mothers of children with autism were just as likely as other moms to report having a close relationship with their child (89% vs. 87%) and five times as likely to do so as mothers of children who had other developmental problems.
And there were few reported differences between moms of autistic kids and other moms in their frequency of being angry with their child or in their perception of their coping skills. About half of the mothers in both groups reported that they were "coping very well with parenting."
The study appears in the May issue of the journal Pediatrics.
"In general the survey shows that mothers of children with autism are doing well," says researcher Guillermo Montes, Ph.D., of the Children's Institute in Rochester, N.Y.
"They were certainly under a lot of stress, but the mothers in this sample were also able to establish close relationships with their [autistic] children, and they felt competent in their parenting and coping skills."
The findings are not meant to minimize the challenges of parenting a child with autism, Montes says. But they do suggest that mothers with autistic kids may have something to teach moms of children dealing with similar developmental struggles.
"The [autism] moms reported being angry at their children less often, and they seemed to have much closer relationships with their children than mothers of children with other social skills deficits," Montes says.
Adams tells WebMD that parenting a child with autism is more than a full-time job. Alison Singer agrees. Singer's soon-to-be 10-year-old daughter Jodie was diagnosed with autism at age 2 1/2.
Moms who work outside the home are often forced to quit their jobs to take care of their child's needs, as both Adams and Singer did. Autism treatment programs can call for 40 hours a week or more of one-on-one behavioral intervention.
"I used to call myself the CEO of Jodie Inc., because managing her life was like running a very time-consuming business," Singer tells WebMD. "I had to organize her therapy, hire the therapists, train the therapists, buy the supplies, and go to battle to get [insurance] coverage for her treatment."
Adams, who lives with her son in Orange County, Calif., describes a similar
scenario. In her book, A Real Boy: A True Story of Autism Early Intervention
and Recovery, she says many women in her situation end up becoming what she
calls "autism super mommies."
"You take on all these roles. You become an expert on diet, on treatments, on all kinds of things, and you end up fighting battles all the time on your child's behalf because the support systems, which are supposed to be in place to help, aren't there."
But both moms agree that the payoff comes from the special bond they have with their children and the joy they take in every hard-won developmental accomplishment.
"My plans included having kids, being a college professor and writing novels, and then it all came apart," Adams says. "But having my son made me a much more empathetic, totally realized human being. There is no question about it."
Singer, who lives in Westchester, N.Y., recalls marveling recently as her daughter boarded the school bus by herself — a task that used to terrify her.
"I started by walking her to the bus and then standing there until it was gone," she says. "It took about two years until she was able to make the full trip from my front door, down the driveway, to the bus. As a mother I have learned to appreciate the things that I probably wouldn't appreciate if I hadn't seen my child work so hard to achieve them."
By Salynn Boyles
Reviewed by Louise Chang, M.D.
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