You may have noticed that I missed World Autism Day as well as the kickoff for Autism Awareness Month 2012 – my daughter got quite sick and we actually spent two nights in the hospital. I’ve spent the last week trying to get everything in gear – it is crazy how two nights away from home can wreak havoc for a full week. While I’m working on getting my life (and her life) back in order, here’s some great advice from the May Institute, 10 Things Not to Say to Parents of Children with Autism.
People can be cruel even when they don’t mean to be. A disapproving look, careless reference, or impatient gesture directed at an individual with an autism spectrum disorder (ASD) or a member of their family can be as painful emotionally as any physical injury sustained. Yet, despite the explosion of information on the Internet about autism, the disorder is still often misunderstood by many outside the autism community. New and sobering statistics from the Centers for Disease Control and Prevention (CDC) indicate that one in every 88 children in the U.S. has an autism diagnosis.
Autism is a developmental disability that typically appears during the first three years of life. It is a neurological disorder causing difficulty with communication, learning, and social interaction. There is no known cause of autism and there is no cure.
To help inform the public during National Autism Awareness Month in April, parents of children with autism enrolled at May Institute’s special education schools were asked to identify hurtful or insensitive remarks that have been directed at them and their families. They also shared suggestions for how the community can be more supportive.
What not to say:
- “What’s wrong with her?”
- “Why do you let him do that? He is scaring my child.”
- “You know, there is no cure.”
- “Have you tried ……? If you did, she would be more normal.”
- “I don’t know how you do it.”
- “Is she getting any better?”
- “Why don’t you just leave your kid at home? It would be so much easier for everyone.”
- “My child doesn’t know how to play with your autistic child.”
- “Funding would be better spent on normal children.”
- “Don’t worry – he’ll be okay.”
“Autism is a very complex disorder. These comments typically come from having a limited understanding of what autism is and what it isn’t,” says Hanna C. Rue, Ph.D., BCBA-D, Vice President of Autism Services at May Institute and Director of Evidence-based Practice at the National Autism Center. “Take opportunities to learn more about autism and other developmental disabilities. Reserve judgment of parents and caregivers who are trying to raise their child on the spectrum in the best way they know how. And remember that individuals with autism have the capacity to feel joy and sadness, and share the need for emotional bonds and connection to others.”
What families want you to know:
May Institute also polled respondents about what they believe most people “don’t get” about autism. Here are facts that families of children with autism want you to know about the disorder:
- Autism is a spectrum disorder – each child is uniquely affected.
- Autism is not the result of bad parenting or lack of discipline.
- Autism can “look” like your daughter, son, niece, or grandchild.
- Parents of children on the spectrum are not paranoid or always overwhelmed with grief.
- Just because a child with autism is non-verbal 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.
- Don’t treat kids with autism as if their diagnosis is contagious.
- Many people with autism are social and want to interact but don’t know how.
- Please don’t reference anyone – be it an individual with an autism diagnosis or any other diagnosis – as “retarded.”
- Be kinder than you need to be, because just about everyone is battling something you know nothing about.
- 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.
People can make a difference when they know how. In the words of one parent, “We need our community to support us. Help us not to feel isolated. Everyone can help in their own way, and everybody’s contribution is appreciated.”
Update: I’ve created an easy-to-share graphic with this list – 10 Things Not to Say to Parents of Children with Autism [Graphic]