What Not to Say to Parents of Children with Autism
With the rapid rise in the rate of autism, even if you do not have a child afflicted with a disorder on the spectrum, chances are you will meet one through a friend or family member. It is certainly natural to be curious and want to be helpful, but unfortunately some comments are taken as hurtful or inappropriate. Experts from the May Institute share tips for those who meet families dealing with autism or another disability.
Because the CDC has reported that today one in 88 children are estimated to be diagnosed with autism, it is imperative that every become familiar with exactly what autism is and what it isn’t. 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 – although scientific research has helped in pinpointing factors that make the risk of developing autism higher - and there is no cure, but with therapies many children will improve over time.
Autism is not mental retardation or lack of intelligence. People with autism may have a coinciding learning disability, but the variance in intelligence levels is the same as it is in the normal population. However, their difficulty in communication and social situations can make intelligence harder to discover.
Autism is also not Obsessive-Compulsive Disorder, although there are some characteristics that are similar. People with autism often have ritual preoccupations and repetitive behaviors but these are different from those with OCD. Tammi Reynolds BA and Mark Dombeck Ph.D describe the difference like this: “OCD compulsiveness appears to be motivated more by anxious attempts to self-sooth, while autistic compulsiveness may be motivated by their need to self-stimulate. At any rate, the disease process that creates obsessions and compulsions in OCD appears to have a different mechanism than the one responsible for autistic deficits.”
If you encounter a family with a child with autism, here are some comments you should avoid along with alternatives to help build understanding:
• Do Not Say: “What is wrong with him?” This seems like a simple statement, expressing a curiosity about a child’s health and well-being. Unfortunately, it is often construed as being judgmental. Instead Say: “Your son appears to have difficulty with communicating his needs. Is there anything I can do to help?” 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."
• Do Not Say: “Why do you let him do that? He is scaring my child.” Or "Why don't you just leave your kid at home? It would be so much easier for everyone." It is natural for you as a parent to want to protect your children, however so does the parent with autism. They want to protect their child from being ostracized and hurt as well. 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. Individuals with autism have the capacity to feel joy and sadness, and share the need for emotional bonds and connection to others. Instead Say: “Susie and Johnny seem to have trouble playing together. What can we do to help?”
• Do Not Say: “You know, there is no cure.” Parents of autistic children are well aware of their diagnosis. However, they should be encouraged to focus on positive solutions rather than the negative. In this case, it really is best to say nothing at all.
• Alternatively, Do Not Say, “Don’t worry, he’ll be okay.” False hope is not the answer either. Also, parents of children on the spectrum are not paranoid or always overwhelmed with grief so comments such as this really aren’t necessary. Parents of autistic children want the best for their kids, just as you do. Instead, you can start a conversation about parenting in general, with each of you learning a little about each other’s family dynamics. Just about everyone is battling something you know nothing about – even parents of “healthy” children.
• Do Not Say: “Have you tried____? If you did, he might be more normal.” First, Autism is a spectrum disorder – each child is uniquely affected and no two children have the same symptoms. What may have worked for one child may not work for another. Second, special diets, certain drugs, or internet-promoted unapproved “therapies” are often suggested by those who simply may have heard about them in passing but do not have evidence to back up the claims. Instead Say, “I’m interested in learning more about the therapies offered for children with autism. What have you tried and what has worked for your child?”
• Do Not Say: “I don’t know how you do it.” 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. 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 says, "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.”
Source: May Institute and the National Autism Center