There's no doubt that autism can be a very isolating disorder. A child with an autism spectrum disorder may make it very tough for families to engage in ordinary activities, from Thanksgiving with the grandparents to soccer with the community. What's more, parents may feel that their friends and family are uncomfortable with their child, critical of their parenting, or deliberately clueless about what it means to raise a child with a developmental challenge.
In theory, autism parents should be able to turn to other autism parents for help, support and understanding. Sometimes, this works out well. Often, though, there are serious splits within the autism parent community itself - and those splits can create an even greater sense of isolation. And, as blog commenter Gretchen notes, "Feeling isolated within an isolated community sort of sucks."
What causes the splits? Sometimes, it's the reality that autism is such a broad ranging diagnosis. It's hard indeed for parents of children with severe intellectual, behavioral and speech issues to connect on a practical level with parents of children with mild or non-existent intellectual, behavioral or speech issues. The fact that all these families have kids with social/communication delays becomes insignificant when one parent is worried about potty training a sixteen-year-old while the other is working on college prep and independent living skills.
Perhaps even more significant are the controversies over treatment. Yes, all parents of kids with autism are looking for effective therapies for their children. But tempers flare when parent X insists ABA is the key to success while parent Y advocates for Floortime and parent Z is certain that only special diets and biomedical intervention can make a significant impact on autistic symptoms.
With autism, the arguments rarely end with a smile and a "well, we all do what we feel is best for our kids." In part this is because each group really, honestly believes that their approach is far more likely to be helpful - and in some cases parents feel that different approaches can actually be hurtful. Few parents feel comfortable saying, in essence, "well, that's great, you should go ahead and provide your child with a treatment that won't make a positive difference and could actually be harmful."
In practice, while parents can work together on specific projects (walks for fundraising, advocating for better adult services, etc.), it's common indeed to feel isolated on a personal level from other autism parents.
Do you feel isolated from other autism parents? How do you cope?
- How Can Families with Autistic Children Find Support?
- How Do I Get the Support I Need from My Family?
- How Can a Family with an Autistic Child Find Support and Friends?
- When Friends or Family Members Have an Autistic Child
Autism Parents: Are You Alone Among the Lonely? originally appeared on About.com Autism on Friday, September 3rd, 2010 at 09:25:59.
