April 15, 2014 at 11:48 AM ET
We know they mean well. Or at least we hope they do. All of the family, friends, co-workers and even strangers who approach parents of children on the autism spectrum with words that really should never have left their mouths in the first place. Words that often unintentionally hurt or upset family members who are affected by autism.
So, in the spirit of National Autism Awareness Month, some of my friends and clients who have children on the autism spectrum decided to brainstorm a list of statements they wish people would and wouldn’t say.
1. Don’t say: “Is your child an artistic or musical genius? What special gifts does your child have?”
We’ve all seen “Rain Man” and know about the extraordinary artistic and musical gifts that some individuals on the autism spectrum possess. But the truth is that most on the spectrum do not have these gifts. In fact, only about 10 percent have savant qualities.
Do say: “How is your child doing?”
This is what you’d say to the parent of a typical child, right? It’s perfectly acceptable to say this to the parent of a child on the spectrum. They can share with you what’s going on in terms of their child’s treatment and/or educational experience.
2. Don’t say: “You’d never know by looking at her that she has autism! She looks so normal.”
While the speaker might view this as a compliment, most parents of a child on the spectrum would not take it as such. Additionally, in the world of autism, the world “normal” is usually replaced with “typical” or “neuro-typical.”
Do say: “Your daughter is adorable”
Or offer any other compliment that you would use with any typical child.
3. Don’t say: “God doesn’t give you what you can’t handle” or “Everything happens for the best.”
Please don’t use clichés. Unless you’re the parents of a child on the spectrum, you don’t really know just how much there is to handle. Statements like these seem to minimize a parent’s experience by implying that this situation is something that they should be able to handle. Also, while it’s tempting to try to put a positive spin on the diagnosis, most parents of newly diagnosed children don’t feel that the diagnosis is the “best.” Over time, parents come to a place of acceptance, and some even view the diagnosis as a gift or as a way to gain a different perspective on life. But don’t be the one to instruct them about coming to those terms.
Do say: “Is there anything I can do to help you out?” or“I’m here if you need to talk.”
You can offer practical solutions to help a parent handle the diagnosis or the ongoing tasks, like help with grocery shopping, babysitting or other daily responsibilities. Sometimes, parents just need to vent and it’s helpful to have a friend with whom to share their feelings.
4. Don’t say: “I know exactly what you’re going through. My cousin has a friend whose neighbor’s sister has a child with autism.”
It’s human nature to try to show empathy for the family affected by autism, but it’s not right to say that you know “exactly” what parents are going through if you don’t have a child with autism.
Do say: “I don’t know what you’re going through, but I’m willing to listen if you need to talk.”
By honestly acknowledging the gap in your knowledge and offering heartfelt help, you will be a much better support system for the parents of a child on the spectrum.
5. Don’t say: “Do you have other children and are they autistic, too?”
While research shows there is a higher than typical incidence of autism among younger siblings of children with autism, it’s still not appropriate to ask this question. Also, it’s more acceptable to refer to children on the spectrum as “children with autism” rather than “autistic children.” When a child has leukemia, we say the child has cancer, not that the child is cancerous. To many parents, saying a child is autistic defines them only by their autism.
Do say: “Do you have other children?”
Just as you would ask this of parents of a typical child, this is a perfectly acceptable question for a parent of a child on the spectrum.
6. Don’t say: “Why don’t you just try…that new special diet I saw on TV? Or the latest and greatest treatment that was featured in the newspaper?
Please don’t offer unsolicited advice, especially if it’s in the form of a new-fangled or untested treatment for autism. Parents generally go into “research overload” as they try to sort through the myriad of treatments to determine what’s right for their child. Don’t make them defend their choices.
Do say: “I’ve been doing some research on autism and if you’d like, I can share it with you.”
The phrasing of this statement gives parents the option of whether or not they’d be open to hearing about what you’ve discovered.
7. Don’t say: “Don’t you think you’ve put him through enough treatment? Just let him grow out of it.” Or “Just accept him the way he is. Why use treatment to try to change him?”
Children do not spontaneously recover from autism, nor do they “grow out of it.” Parents do accept their children with autism for who they are, but like parents of typical children, they want to give their children every opportunity they can, which often translates into intensive treatment regiments. Research shows the importance of intensive early intervention, and treatment/support usually continues over the lifetime of an individual on the spectrum.
Do say: “What kind of treatment program are you using for your child?” or “What school does your child attend?”
Be careful not to offer unsolicited advice about the treatments or educational choices that have been made, or be overly probing. Take your cues from the parents about how open they want to be about the specifics of their child’s treatment plan.
8. Don’t say: “It’s such a burden to have to drive my kids to soccer practice and ballet classes every day!”or “My kids are talking so much they’re driving me crazy!”
Please don’t complain about all of the “normal” things that bother you as the parent of a typical child -- at least not in front of parents who have children on the spectrum. Most parents of children with autism dream about driving their kids to soccer or ballet, and parents of the 25 percent of non-verbal children on the spectrum dream about their children speaking one day. Be aware of and sensitive to their needs.
Do say: “Can I offer to drive your child to speech therapy or physical therapy?”
Parents appreciate the extra help when it comes to driving their children to appointments, especially if there are siblings at home who need care, or help at an appointment when a child is scared or fussy.
9. Don’t say: “You should really make time for yourself. You need to relax. Maybe schedule a massage?”
Life can be incredibly overwhelming, especially during the months right after your child is diagnosed with autism. Usually, the first thing you want to hear is about everything that you need to know about autism, and the last thing you want to hear is that you should make time for a mani/pedi. Sometimes, as the parent of a child with autism, “me” time is just not realistic.
Do say: “If ever you feel like you’d like to take some time for yourself, I’d be happy to help out.”
Once parents adjust to living with a child on the spectrum and establish a new normal, then it’s okay to offer to take them out for fun, or to stay with their child so that they can go out.
10. Don’t say: “How’s the marriage going? I hear the divorce rate is 80 percent among parents of kids with autism.”
You’d be surprised how many people like to quote this statistic. It’s false! Yes, parenting a child with autism can put additional stress on a marriage, but it seems that the divorce rate is similar among parents with or without autism in the family.
Do say: “Can I offer to babysit so you and your spouse can go out to dinner?”
Parents of newly diagnosed children find it challenging enough to navigate the new world of autism, let alone to find time to have a date night (or trust someone to take care of their child). I went to a benefit for an autism school where the most popular silent auction item was the one for a teacher who offered her babysitting services.
11. Don’t say: “What caused your child’s autism?”
Speaking about the cause of a child’s autism is a particularly sensitive subject because there is no known single cause. There are many theories about the causes of autism, which include heredity, genetics and environmental factors.
Do say: Nothing.
Even if you have a burning desire to ask this question, please don’t. It is both highly controversial and emotionally-charged. Often parents experience guilt around the cause of their child’s autism, and you’d only be adding fuel to the fire.
Here’s a final note to our friends, family and co-workers: Thank you.
We sincerely appreciate your efforts to connect, and hope that you’ll continue to reach out. We really do want your support, and if we don’t always respond the way you wish we would, well…maybe you’ll make up a list for us?
Karen Siff Exkorn is the author of "The Autism Sourcebook: Everything You Need to Know About Diagnosis, Treatment, Coping and Healing—From a Mother Whose Child Recovered" and a board member of New York Collaborates for Autism.