Children with autism thrive when surrounded by supportive families and communities. So, step up with a listening ear, childcare, and even financial support if you can. But hold back the unsolicited advice, says Catherine Lord, M.D., director of the new Center for Autism and the Developing Brain at New York-Presbyterian Hospital.
“Accepting and loving the child with autism—and following the parent’s recommendations—is far more valuable than plying his mom and dad with ideas, contacts, and possible cures,” Dr. Lord emphasizes. Wholesale comments just add stress to parents raising their child the best way they know how.
Researchers believe that lasting differences in the way people with autism communicate and relate to others are linked to brain development before birth. New studies published in the journal Nature now suggest up to 1,200 suspect genes could potentially lead to new targets for treatments.
“There’s no cure yet for autism, but chances are improving all the time for these kids to be independent and have a good quality of life. Families, teachers, and therapists can all make a tremendous difference,” adds Dr. Lord.
Here’s a quick guide to talking about autism from parents of children with the complex developmental disorder enrolled at May Institute’s special education schools.
What not to say:
1. “What’s wrong with her?”
2. “Why do you let him do that? He is scaring my child.”
3. “You know there is no cure.”
4. “Have you tried [suggestion]? If you did, she would be more normal.”
5. “I don’t know how you do it.”
6. “Is she getting any better?”
7. “Why don’t you just leave your kid at home? It would be so much easier for everyone.”
8. “My child doesn’t know how to play with your autistic child.”
9. “Funding would be better spent on normal children.”
10. “Don’t worry—he’ll be okay.”
What the families want you to know:
1. Autism is a spectrum disorder—each child is uniquely affected.
2. Autism is not the result of bad parenting or lack of discipline.
3. Autism can “look” like your daughter, son, niece, or grandchild.
4. Parents of children on the spectrum are not paranoid or always overwhelmed with grief.
5. Just because a child with autism is nonverbal or does not make eye contact, it does not mean he or she doesn’t notice the looks or feel pain from being ignored, bullied, or disregarded.
6. Autism is not contagious.
7. Many people with autism are social and want to interact but don’t know how.
8. It is impolite to reference anyone—be it an individual with an autism diagnosis or any other diagnosis—as “retarded.”
9. It is important to be kinder than you need to be because just about everyone is battling something you know nothing about.
10. Parenting a child with autism is difficult and rewarding, just like it is for parents of typical children. It just takes a little more patience and understanding.
May Institute and the National Autism Center provide educational, rehabilitative, and behavioral healthcare services to individuals with autism spectrum disorders and other developmental disabilities, such as brain injury, mental illness, and other behavioral health needs.