Updated May 25, 2014.
A while back, I wrote about a study that finds that raising kids with autism is more stressful for moms than raising kids with other developmental issues (dads were not included in the study). The researchers suggest that the "special" issue involved with autism relates to "autistic behaviors," which can really send parents over the edge.
A Q&A with the researchers on the New York Times site added a little more grist to the mill.
After reading the article, though, I had to think that the researchers asked the wrong questions. While the study looked at autistic children as the cause of stress, it may be that the kids themselves (in most cases) are only a part of the equation -- and a relatively small part, at that!
What's stressful about raising a child with autism today? Sure, raising a child with a disability is hard and thankless work -- and that, in itself, is stressful. It's particularly stressful for families with children whose symptoms are very severe. But that group is relatively small.
Here's my list of what REALLY causes stress for most parents with kids on the autism spectrum:
Is autism stressful? Absolutely. But the idea that autism-related stress is the direct outcome of a child's behaviors -- and nothing else -- is just plain short-sighted!
A while back, I wrote about a study that finds that raising kids with autism is more stressful for moms than raising kids with other developmental issues (dads were not included in the study). The researchers suggest that the "special" issue involved with autism relates to "autistic behaviors," which can really send parents over the edge.
A Q&A with the researchers on the New York Times site added a little more grist to the mill.
After reading the article, though, I had to think that the researchers asked the wrong questions. While the study looked at autistic children as the cause of stress, it may be that the kids themselves (in most cases) are only a part of the equation -- and a relatively small part, at that!
What's stressful about raising a child with autism today? Sure, raising a child with a disability is hard and thankless work -- and that, in itself, is stressful. It's particularly stressful for families with children whose symptoms are very severe. But that group is relatively small.
Here's my list of what REALLY causes stress for most parents with kids on the autism spectrum:
- Money. Even as some insurers are stepping up to the plate with some support for some treatments, others are running as fast as they can in the other direction. Families are spending far more than they can afford on autism treatment. That's some pretty significant stress for you.
- Guilt and Anxiety. There's plenty of info on the web that suggests that parents are in some way responsible for their child's autism, could have prevented, could cure it, or should provide more and more and more treatments for their child. No one can do it all -- but that doesn't mean you don't feel you should. Talk about stress!
- Red Tape. If the researchers have never dealt with the special education system or state healthcare systems, they have no clue what stress looks like.
- Uncertainty. Few parents of autistic children have any useful information about what will help their child the most, how far their child will come, or what sort of outcomes to expect. Which of many available therapies is best for your particular child? No one knows. Will he or she learn to speak? Make friends? Graduate high school? Go to college? Get married? Hold a job? No one can tell you, so it's impossible to plan or even think intelligently about the long term future.
- Relationship Issues. Mom wants to send her autistic son to a special private school. Dad is gung ho for public school and inclusion. Bingo: stress. Dad is too busy at work to take his autistic daughter to therapies, so Mom winds up cutting down on her work hours and missing out on career opportunities. More stress!
- Extended Family. At every visit, Grandma has another pile of "useful" articles about "magical" treatments for autism. Meanwhile, Grandpa has no clue how to interact with your child, and does his best to avoid interactions of any kind. Your sister has great advice for how to raise your child on special supplements, while her husband is worried that his baby will "catch" autism from your son. Sound like a fun family gathering?
- Other Autism Parents. Every support group for parents of kids with autism includes at least a few vigilantes who are determined to indoctrinate all the other parents in their point of view on autism. Just coping with their onslaughts is tough enough -- even tougher is resisting their sales pitches and guilt trips.
- The Media. Every day there's a new story about causes and cures for autism. Which bandwagon should you jump on? Is there a conspiracy to injure your child? Should you sue the vaccine courts? Will this or that new finding change everything? There's nothing like uncertainty to induce stress.
- Loneliness. Parents of kids with autism are forced to the sidelines in so many ways. No, their kids aren't on the soccer teams, performing in the dance recitals or inviting friends for play dates. No, they can't hang out with other moms while the kids "play." No, they can't attend big, loud family events and expect a fun, low-key experience. In short, it's lonely and alienating to be the mom who is never able to just say "yes" to fun and friendship.
Is autism stressful? Absolutely. But the idea that autism-related stress is the direct outcome of a child's behaviors -- and nothing else -- is just plain short-sighted!
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