12 Things You Should Never, Ever Say to an Autism Parent
These comments may seem innocent enough, but they can strike a nerve with those who have children on the autism spectrum
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How to speak to the parent of a child with autism
If you’re the friend or relative of a parent whose child has autism, it can be helpful to learn more about the developmental disorder. (Like the fact that ADHD and autism are two different disorders.) It’s also important to know how to be supportive—and you can start by learning the appropriate things to say to parents of children with autism.
That’s normal for his age
Parents of children with autism face a plethora of issues every day with their kids, from refusing to eat certain foods to having a meltdown because a tag from a T-shirt touches their skin. Although such behaviors can sometimes mirror what we consider “normal” behaviors in other children, they are usually much more pronounced. The parents of a child with autism are often the only ones who see their child’s struggles every day. To an outsider, it can be easy to pass behaviors off as “normal,” but to those who live it daily, it’s a much different situation. Dan Jones, author of Look Into My Eyes: Asperger’s, Hypnosis and Me, has spent the past 20 years working with children and adults with autism, and their families. Jones himself has Asperger’s, a high-functioning form of autism. “People still say everything I’m describing [about Asperger’s] is just normal, but I feel better with a label I can explain things through, where I can describe clusters of things under the label, rather than the one bit someone is focusing on,” he says. Here are 18 autism myths doctors wish you’d stop believing.
Here’s what to say instead: Can you tell me a little about the things that affect him most every day?
I’m sorry—it must be so hard
Autism parents already know how difficult the condition can be, but not just for them. They see the struggles their child goes through, and that’s where the real difficulties lie. Most parents of children on the spectrum don’t want sympathy. Instead, they want to know that others won’t turn away from them when they need them most. They may need a shoulder to cry on, or a friend to give them a few minutes to get comfortable and breathe to reduce stress. Here are some tips on how to learn healthy breathing.
Here’s what to say instead: I can see how stressed out you are. What can I do to help?
I know someone with autism, so I understand
If you know one person with autism, you know one person with autism. In other words—as most people on the spectrum, or people who work with those on the spectrum, will tell you—there is no set standard for what autism looks like.
“Some people with autism have little language and require constant support, whereas others have excellent language and are highly skilled and independent,” says Geraldine Dawson, PhD, professor of psychiatry and director of the Duke Center for Autism and Brain Development at Duke University School of Medicine in Durham, North Carolina. “In all instances, however, people with autism have difficulty navigating the social world and have some type of repetitive behavior. Common social impairments across the spectrum include making little eye contact, difficulty reading social cues, and having trouble with forming social relationships. Common repetitive behaviors include motor mannerisms, sensitivity to sound and light, and preoccupations with specific topics and interests.” Here are 8 autism symptoms every parent should know.
Here’s what to say instead: I know autism can be so different in people. Can you tell me about how it affects your child? I’d love to know more.
Autism wasn’t as common a few years ago
It’s true that autism is more commonly diagnosed than it was just a few decades ago. According to the Centers for Disease Control and Prevention (CDC), autism was diagnosed in about 1 in 150 children in 2000, compared with 1 in 59 now. However, it’s far from a made-up disorder. “More research certainly led to a better understanding of the condition,” says Oksana Hagerty, PhD, an educational and developmental psychologist who serves as a learning specialist at Beacon College in Leesburg, Florida. “But social relativity also plays an important role as better economic conditions elevated the perception of the status of neurodevelopmental disorders such as autism spectrum disorder (ASD) and specific learning disorders (SLD).” In other economically disadvantaged countries, these types of disorders are considered “luxury-level disabilities,” says Hagerty, because they aren’t equipped with the resources necessary for diagnoses.
Here’s what to say instead: I’ve heard autism is on the rise. I’d love to help you bring awareness to the disorder so more children and adults can get the help they need.
That’s why I don’t get my child vaccinated
The possible link between autism and the vaccinations children get before the age of 5 began because of a fraudulent research paper by Andrew Wakefield. Since then, many parents have elected not to vaccinate their children, for fear of vaccinations raising the risk of their kids developing autism, and some are quick to pass judgment on those who do. According to the CDC, however, there are legitimate studies conducted that conclude no link between vaccines and the development of autism. The studies have looked at everything from the antigens (the compounds that sort of poke the immune system to get a response) to the ingredients in vaccines, and the results have been the same. Here are other common myths related to vaccines.
Here’s what to say instead: I may have different beliefs about vaccines, but I know every parent has a responsibility to do what he or she feels is best for the child.
Are you sure?
The diagnostic criteria for evaluating individuals for autism, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM–5), is extremely comprehensive. It involves paperwork from parents, teachers, and specialists, thorough observations of the individual, play-based assessments, and more. Still, autism comes under fire often as a disorder that is too easily diagnosed, leaving some to question the accuracy of the diagnostic process, sometimes even accusing parents of pushing for a diagnosis. Amy Hess, program director at the Center for Autism Transition and Services (CAST) at The Ohio State University in Hilliard, Ohio, admits that the evaluation process for her son was extremely difficult for her. “To see our son fail aspects of the ADOS (Autism Diagnostic Observation Schedule), as well as other tests, was heartbreaking,” she says. “We challenged the results, reviewed the data and had difficulty accepting the diagnosis, mainly because we did not want the diagnosis.” In other words, it’s not something most parents take lightly, and it’s certainly not something they wish for their children. Here are 13 things experts wish people knew about autism.
Here’s what to say instead: Can you explain more about the diagnostic process? I’m interested in knowing more.
You should teach him some manners
It can be incredibly difficult to teach a child on the spectrum manners, such as saying “please,” “thank you,” or even keeping his or her elbows off the dinner table. “Usually, social skills are picked up almost unconsciously because our brains are wired to be sensitive to social cues, such as facial expressions and gestures,” says Dr. Dawson. “Even young babies will respond differently to a smile versus a frown. People with autism missed these cues, making it hard to understand and interpret the social world.”
Since children on the spectrum don’t typically have the same ability to mimic social skills as others do, most “learn social skills in a more rule-based fashion and benefit from social skills training in which they are provided with explicit instruction for how to interpret and respond to others’ social behavior,” says Dr. Dawson. Although consistent therapies can help some children on the spectrum develop manners, there is no one-size-fits-all approach.
Here’s what to say instead: What should I do to help him develop manners? What are you doing at home that works?
He won’t be so picky if you make him eat what you eat
Autism and picky eating usually go hand-in-hand, but it’s caused by much more than a parent simply not making a child eat certain foods. “Picky eating is very common among individuals with autism,” says Dr. Dawson. “It can occur for different reasons, including disliking certain tastes and textures, preference for routine and sameness in their diet, or difficulty chewing and swallowing certain foods.”
Developmental delays can impact the ways in which children on the spectrum view, and enjoy food. For some, extremely limited interests can make every single meal a battle. Sensory processing difficulties can make a child on the spectrum feel as though a well-balanced meal is a punishment, rather than a pleasurable, nutritious experience. Speaking of picky eaters: Your kid only wants to eat pasta? Here’s why it’s actually okay.
Here’s what to say instead: What foods are her favorite? Maybe I can give you some new ideas of ways to prepare them that she might like.
Autism is an excuse for bad behaviors
Autism is a clinically diagnosed disorder. Many parents of children on the spectrum may explain away certain negative behaviors, like aggression or meltdowns, as common among people with autism, because they absolutely are. It doesn’t mean that they are trying to downplay their severity, though. It’s easy for parents to feel helpless when it comes to challenging behaviors in children on the spectrum. Seemingly simple, everyday tasks for other children can be extremely challenging for those on the spectrum. “Parents should choose their battles,” says Dr. Hagerty. “Avoiding the word ‘bad’ and sticking to the word ‘fair,’ instead, will save a lot of energy for both the child and the family.” Check out the 8 ways you can ease your anxiety when you send your kid to kindergarten.
Here’s what to say instead: I’ve heard that autism can present a lot of challenging behaviors. If you ever want to vent, I’m here.
She just needs some more socialization
Socialization is a touchy subject for many autism parents. Although they know the importance of being around others, it can be heartbreaking to witness a child with autism struggle to socialize. It’s just not as simple as giving him or her more opportunities to do so. Hess says that people with autism typically enter into social groups led by therapists. These groups give social opportunities while allowing the therapist and other participants to guide people in picking up on important social cues and use proper social techniques within a group. It’s all about giving those on the spectrum opportunities for navigating social scenarios, but doing so at their own pace so as not to overwhelm them by triggering anxiety. Read what it’s like to live with crippling anxiety.
Here’s what to say instead: I can tell she has a hard time in social situations. What can I do to make it easier for her?
Her behavior is out of control
Parents of children on the spectrum are well aware of the consequences of their children’s behaviors. But, it takes time to address those behaviors due to underlying health conditions that so often come along with the disorder. Janet Lintala, DC, author of The Un-Prescription for Autism: A Natural Approach for a Calmer, Happier, and More Focused Child, and founder of Autism Health, is an autism mom herself. Children with autism “aren’t giving us a hard time, they are having a hard time, and more understanding of how overwhelming their world can be is needed,” says Dr. Lintala, adding that there are a vast number of therapies available that can help children on the spectrum, and their parents, work through negative behaviors. Those therapies include applied behavior analysis, cognitive behavior therapy, and social role-playing. However, it can be a long process, especially when many sensory issues often have to be addressed before other therapies can begin to make progress.
Here’s what to say instead: What do her therapists think about her progress? Have they suggested anything new to try?
He looks completely normal to me
As the mother of a child on the spectrum, Dr. Lintala admits that this type of comment not only makes her feel awkward, but she’s embarrassed for the person saying it, too. As a clinician, she handles these types of comments sincerely and uses it as a teaching opportunity: “I keep my voice calm and non-judgmental, and ask a simple question like, ‘What were you expecting?’ or ‘What do you think autism looks like?’ ” she says. “This leads to an exploration of their concept of autism and gives me the opportunity to break down stereotypes gently.” Dr. Lintala says that new breakthroughs in genetics are revealing that, perhaps, those on the spectrum are simply just on one side of the “normal” spectrum, with a wide range of health issues that present the challenges we see in people with autism. In other words, there is no definition of “normal,” and there is also no reason to ever consider a person on the spectrum as anything but.
Here’s what to say instead: I admit I don’t know much about autism. I’d love to learn more whenever you’re able to talk about it.
- Dan Jones, author of Look Into My Eyes: Asperger’s, Hypnosis and Me
- Autism Society, "Asperger's Syndrome"
- Geraldine Dawson, PhD, professor of psychiatry and director of the Duke Center for Autism and Brain Development at Duke University School of Medicine in Durham, North Carolina
- Centers for Disease Control and Prevention, "Data & Statistics on Autism Spectrum Disorder"
- Dr. Oksana Hagerty, an educational and developmental psychologist who serves as a learning specialist at Beacon College in Leesburg, Florida.
- Indian Journal of Psychiatry, "The MMR vaccine and autism: Sensation, refutation, retraction, and fraud"
- Amy Hess, program director at the Center for Autism Transition and Services (CAST) at The Ohio State University in Hilliard, Ohio
- Janet Lintala, DC, author of The Un-Prescription for Autism: A Natural Approach for a Calmer, Happier, and More Focused Child, and founder of Autism Health
- Autism Speaks, "What is Applied Behavior Analysis?"