10 Things Not to Say to Parents of Children with Autism

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:

  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 ……? 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.”


“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]

About Melissa

Melissa is the mother of two children on the autism spectrum and strives to provide information about all aspects of autism through her blog, The Autism Education Site. Follow Melissa on Twitter. Like me on Facebook.

© Melissa Hincha-Ownby and The Autism Education Site, 2008-2014.

Comments

  1. As a single parent of three teenagers all of whom have varying degrees of autism / disability, I’m about to verbally “punch” the next person who says “you must have the patience of a saint!” My response? “NO, I don’t. I’m HUMAN!”

  2. Melissa,

    Thanks so much for your wonderful articles. It is very helpful to hear about the issues within autism from a parents perspective. Sometimes as professionals in the field, we forget about the entire family and just tend to focus only on our specific client. This blog will be enlightening and I’m going to bookmark it for my reference. I also blog on issues within autism but from a behavioral point of view. If you’re interested, you can check it out at http://www.autismbehaviorbox.com. Again thanks for the wonderful article.

    Take care,

    - Christina

  3. motivatedmum says:

    Great articles..left a reply on linked in but thought I would put it here too!
    My experience of what not to say …Most peoples comments that hurt are down to their own ignorance. How can we expect them to fully understand unless they have walked in our shoes for a week! After 13 years of comments I have given up being upset by them but only feel sad that they are not privileged enough to understand. It is true you that you really do find out who your friends are and whilst it hurts at the time it is the start of some beautiful friendships with those that do stick around!
    I guess the thing I found the hardest was the implication that it was something I had done, or was doing wrong that was either the cause of my sons difficulties or making it worse! That is not good for self esteem especially when it comes from family members. It took me ages to build my confidence back up after that! I get frustrated when ‘non- medical’ interventions are dismissed especially when it is so obvious how they help. There are many ‘experts’ out there who claim to know how to help but with all their knowledge forget that we (the parents and closest to our children) are the experts. I wholeheartedly recommend only dealing with those that understand this. Of course we don’t always have a choice who are children come into contact with but we can protect them and ourselves by limiting the damage.
    BTW a great thread – thanks for starting it! I blog occasionally on the Brainchild blog if anyone wants to read more of my ramblings! and yes I do believe that reflex/sensory integration has a huge part to play in the holistic support that we should all be receiving early in our children’s lives. All of the above holds true for our ‘normal’ children – if there is such a thing!
    Take care,
    Amy

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  1. […] provides educational and other services to children on the autism spectrum, published a list of 10 Things Not to Say to Parents of Children With Autism to support Autism Awareness Month 2012. That post is one of my most shared posts here at The Autism […]