A parent asks: We have an eight-year-old daughter with autism. We’ve always agreed on our approach to parenting her, and we have no trouble loving her just the way she is. She gets speech therapy and other interventions through her school, which have helped her progress in her schoolwork and with interacting with her classmates. We’re new to the community, so I joined a parent support group. Every day brings dozens of messages from the many people in the group who spend thousands of dollars every month in hopes of curing their child’s autism, putting their kids through test after test and dosing them with drugs, supplements, injections, restrictive diets and treatments that sometimes sound just bizarre. They view celebrities I’ve never heard of as authorities on autism parenting.
The most disconcerting about these messages is how they challenge the way we deal with our daughter’s autism. Could we really cure our child if we poured all our money into these treatments, or would we just incur a massive debt of disappointment and lost time? How much stress does it impose on the child?
You seem like a sensible person who understands our special children. We want to stay the course, loving our child unconditionally, instilling good eating and self-care habits, and making sure she has access to the kind of education she needs. How do we know if this is enough? Do we need to do more?
Ellen answers: It doesn’t matter what I or anyone else thinks; the opinion that matters most in this is your own. Your letter has all the hallmarks of parents who are on a meaningful, productive track. You love your child just as she is, rather than sending her the subliminal message that she is somehow broken. You’re finding your school’s interventions effective; you characterize the messages from your group as disconcerting. What does your instinct tell you? You may have already answered your own question.
The celebrity culture in America is pervasive . . . and irrelevant. Celebrities are only flesh-and-blood parents like ourselves, the difference being that they have more money to pour into various treatments, care situations, etc. Their parenting experience is one experience with one child. There’s no substitute for knowing your own child, keeping an open mind as you listen to others, reading and exploring possibilities, but knowing that it is just information, not a mandatory call to action. What does your instinct tell you?
Debate churns continually about whether we can “cure” our kids of their autism. I refuse to engage. I want my son to be as functional, happy, productive and independent as he can be. That’s the goal, regardless of what label we attempt to attach. It’s the same goal every parent wants for every child. In this, our kids are no different, but we do not call it “fixing” so-called typically developing kids when we try to teach them the skills they need to succeed. Our autistic children have a tougher path to tread than their many of their peers. Why make it even harder with incendiary language and expectations?
What does your instinct tell you?
I can’t fathom why a parent group would feel it’s their place to challenge your parenting style. Even they have a 100% success rate for their methods—do they?—it’s central to the understanding of autism that “if you’ve met one child with autism, you’ve met one child with autism.” If any “cure” had achieved statistically significant success, we would all know about it.
As a twenty-something, my son enjoys many aspects of adult independence without ever having been “treated for autism.” When he had gastrointestinal problems, seizures or food sensitivities, we treated those. His language deficits and sensory integration issues were addressed through school-based therapies. He pays close attention to his nutrition and holistic wellness. His doctors and therapists have always pointed out that they have many more patients and clients with these ailments or conditions who do not have autism than do.
Parents must aggregate information and experiences, and decide what is best for their child. It’s smart to examine and consider the views of others, but know that their experiences aren’t have-to’s for your family. You’re the authority on your child.
What does your instinct tell you? Trust that.
Those other parents are out of line and are also following a pseudo scientific cult that tries to cure autism, rather than excepting autism as a neurodiversity that has unique and special qualities. They sprout useless diets, and detoxification for made up toxins – they don’t follow the evidence-based research, and they promote dangerous and useless interventions such as chelation (for the non-existent heavy metal poisoning) and they say that vaccines cause autism – which is NOT true and a meta-analysis of over a million children shows there is no connection. They are wrong, wrong, wrong and they lead parents of children with autism down an expensive path that does nothing to help their children, and which stigmatizes their children (as they say their children are toxic and need to be cured). All the money and time they waste on these so called biomedical interventions to cure autism is diverted from interventions that actually work.