Autism (autistic disorder) is a neurodevelopmental disorder that typically appears during the first three years of life. It affects development of the brain which causes difficulty with communication, learning, and social interaction. It is one of several autism spectrum disorders or ASD that include Asperger’s disorder (syndrome) and pervasive developmental disorder not otherwise specified (PDD-NOS). Recent 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. Over the past 10 years the rates have steadily risen, from one in 150, to one in 110, and now to one in every 88 children. This represents a 78 percent increase in the number of children identified with an autism spectrum disorder (ASD) over the past decade.
Despite this dramatic increase in prevalence and the explosion of information on the Internet about autism, the disorder is still often misunderstood by many outside the autism community. As part of a recent campaign to raise awareness about autism, the May Institute polled families served by Institute centers and schools about their experiences raising a child with autism. Parents of children with autism enrolled at the 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. Results of the poll reveal feelings of isolation, a sense of being judged, and a significant lack of public understanding and sensitivity. The following are tips on “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.”
Parents were also asked about what they believe most people “don’t get” about autism. The following are factual information points that families of children with autism want others 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.
Community and educational resources are needed to provide support for families of individuals who have autism spectrum disorders (ASD) and the professionals who work with them. Helping professionals and the general community develop a better understanding of the challenges of persons with autism and their families is critical. 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.”
American Academy of Pediatrics. Understanding Autism Spectrum Disorders [pamphlet]. Elk Grove Village, IL: American Academy of Pediatrics; 2005. <http://www.pediatrics.org>
Autism Society of America <http://www.autism-society.org>
First Signs. <http://www.firstsigns.org>
May Institute <http://www.mayinstitute.org/>
National Autism Center <http://www.nationalautismcenter.org/>
National Institute of Child Health and Human Development Autism Site <http://www.nichd.nih.gov/autism>
Organization for Autism Research (OAR) <http://www.researchautism.org/>
The National Autism Center is May Institute's Center for the Promotion of Evidence-based Practice. It is dedicated to serving children and adolescents with ASD by providing reliable information, promoting best practices, and offering comprehensive resources for families, practitioners, and communities.
Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers.