After more than a decade in a clinical setting spent testing, assessing and diagnosing children with a variety of disabilities, life sent me and my wife one of it’s more ironic twists. Our second child, Ross, was diagnosed with autism. He is non-verbal and on the more severe end of the spectrum.
Having sat on both sides of the diagnostic table, as a health professional and as a parent, provides a unique perspective into the misconceptions that so much of the population seems to have regarding autism. With the relatively recent elimination of the previous subtypes of autism, we’re left with a broad definition of what autism is and how it looks.
People are often inquisitive because there’s so much they don’t understand about the disorder. Rightfully so, as there’s plenty even professionals still don’t know. But well-meaning questions or statements can actually be quite hurtful for parents going through a diagnosis or treatment process.
To avoid putting your foot in your mouth, here are nine tips on how to talk to a parent of a child with autism.
1. “Are you sure he is autistic?”
Most parents have struggled with the difficulties that their child is going through and have been as thorough with their child’s care as they can be. Their child sees psychologists, pediatricians, occupational therapists, physical therapists, speech and language pathologists, audiologists and more. Instead of questioning whether they’ve done due diligence, ask instead about the diagnostic process. Who did the child see and how long did it take?
2. “But he looks so normal” or “She’s so pretty, it’s hard to believe.”
Parents of any child with a disability have already had to deal with the “death of their imagined child,” the one they spent the entire pregnancy discussing, envisioning and planning to watch grow up. What activities would they do? Where will they go to college? Then they start to realize that some, if not all, won’t happen. It’s a difficult time and the last thing a parent needs to hear is their child doesn’t “look” disabled.
3. “What caused it?”
As a psychologist, this one doesn’t bother me, but several parents I’ve talked to are very irritated by this question. Because we don’t know what causes autism, parents second-guess everything they did during the pregnancy. Every decision is replayed. Until there’s a definitive answer, those questions never go away and parents needn’t be reminded of them.
4. “Does he have any special gifts?”
Fortunately this question isn’t asked nearly as often as it used to. Only 10 percent of children with autism have splinter or savant-like skills. Most of the time, asking this just hammers home how very impaired their child is.
5. Avoid clichés.
Saying, “You are so strong” or “God doesn’t give you more than you can handle” really only gives the speaker the illusion of being supportive but the parent is still left with nothing. Instead of clichés, ask if there is anything you can do to help and provide something of substance.
6. “I know what you’re going through.”
Unless you have a child with the exact same characteristics as mine, you have no empathy to give. Each child is so unique that even parents who also have a child with autism can’t always relate easily to other parents.
7. “Remember to make time for yourself and spouse.”
This sounds like good advice except parenting a child on the severe end of the spectrum is a never-ending job. If you’re going to mention this, be the mechanism that allows it by offering to babysit and providing some of that elusive respite yourself.
8. “I’m sorry.”
This statement is meant to deliver sympathy, but many parents aren’t seeking sympathy. They don’t have time for it. A better way to deliver a similar thought is to expand on it. “You have a lot on your plate and your friends and family are aware of it. If there’s anything I can do, please let me know.”
Not saying anything is the worst of them all. Parenting a child with special needs can be very isolating. Don’t ignore their children or pretend they don’t have any when you talk to parents. They’d rather you say any of the well-meaning (but off-putting) statements above than just avoid us altogether.
Clearly, there’s a theme to much of the advice above. Be proactive instead of passive. If this is a friend of yours, volunteer to help rather than remaining ignorant and inadvertently being part of the problem.