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 spectrum.
That’s normal for his ageNicole Fornabaio/Rd.com, enterlinedesign/shutterstock
Autism parents deal with a plethora of issues every day with their children, from refusing to eat certain foods to having a meltdown because a tag from a T-shirt touches their skin. Although autistic behaviors can sometimes mirror what we consider “normal” behaviors in other children, they are usually much more pronounced. The parents of an autistic child 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, 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.”
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 hardNicole Fornabaio/Rd.com, enterlinedesign/shutterstock
Autism parents already know how difficult autism 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’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 understandNicole Fornabaio/Rd.com, enterlinedesign/shutterstock
Outsiders to autism often believe that autistic individuals are, generally very similar, or exhibit similar behaviors. However, 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. Maureen Lacert, a behavior analyst, special education teacher, and Director of Nashoba Learning Group, told boston.com, “If you know one person with autism, you know one person with autism. They’re all such unique individuals. They’re unique in their learning. They’re unique in their behaviors. It requires a unique approach in order to best teach any individual on the spectrum.” These are common signs of autism to look for in a child.
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 agoNicole Fornabaio/Rd.com, enterlinedesign/shutterstock
It’s true that autism is more commonly diagnosed than it was just a decade or so ago. According to autismspeaks.org, autism was diagnosed in about 1 in 166 people a decade ago, and is now diagnosed in 1 in 68. However, it’s far from a made-up disorder. Dr. Oksana Hagerty sheds some light on this topic, as an educational and developmental psychologist who also serves as a learning specialist at Beacon College in Leesburg, Florida. “More research certainly led to a better understanding of the condition. But social relativity also plays an important role as better economic conditions elevated the perception of the status of neurodevelopmental disorders such as ASD and specific learning disorders (SLD).” Dr. Hagerty explains that, in other economically disadvantaged countries, these types of disorders are considered “‘luxury’ level disabilities” 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 vaccinatedNicole Fornabaio/Rd.com, enterlinedesign/shutterstock
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 children developing autism, and some are quick to pass judgment on those who do, especially if their child has been diagnosed on the spectrum. However, the Centers for Disease Control and Prevention counters that there have been 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?Nicole Fornabaio/Rd.com, enterlinedesign/shutterstock
The diagnostic criteria for evaluating individuals for autism, according to the DSM-5 (which is like a handbook for doctors), 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 Wexner Medical Center and an autism parent, 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. We challenged the results, reviewed the data and had difficulty accepting the diagnosis, mainly because we did not want the diagnosis,” she says. In other words, it’s not something most parents take lightly, and it’s certainly not something they wish for their children.
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 mannersNicole Fornabaio/Rd.com, enterlinedesign/shutterstock
It can be incredible difficult to “teach” a child on the spectrum manners, such as saying “please,” “thank you,” or even keeping his elbows off the dinner table. As Jones explains in his book, Look Into My Eyes, “Social skills are something that most people learn unconsciously as they grow up, through copying parents and older siblings.” Children on the spectrum don’t typically have the same ability to mimic social skills as others do. Rather, they have “very limited awareness that there are different ways to treat people, or that different behavior has different meaning.” 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 eatNicole Fornabaio/Rd.com, enterlinedesign/shutterstock
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. A clinical study focused on sensory processing and eating problems in children on the spectrum estimates that about 80 percent of children with developmental difficulties, including autism spectrum disorder (ASD), struggle with selective eating. 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.
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 behaviorsNicole Fornabaio/Rd.com, enterlinedesign/shutterstock
Autism is a clinically diagnosed disorder. Many parents of children on the spectrum may explain certain negative behaviors, like aggression or meltdowns, as autistic behaviors, 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. Dr. Hagerty explains that seemingly simple, every day tasks for other children can be extremely challenging for those on the spectrum. “Parents should choose their battles. Avoiding the word ‘bad’ and sticking to the word ‘fair,’ instead, will save a lot of energy for both the child and the family.”
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 socializationNicole Fornabaio/Rd.com, enterlinedesign/shutterstock
Socialization is a touchy subject for many autism parents. Although they know the importance of socialization for autistic individuals, it can be heartbreaking to witness a child’s struggles with socialization. It’s just not as simple as giving the child more socialization opportunities. Hess says that autistic individuals typically enter into social groups led by therapists. These groups give social opportunities, while allowing the therapist and other participants to guide individuals to pick 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 controlNicole Fornabaio/Rd.com, enterlinedesign/shutterstock
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. Dr. Janet Lintala, 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. Lintala explains, “Our autistic children 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.” According to Lintala, there are a vast number of therapies available that can help children on the spectrum, and their parents, work through negative behaviors, like 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 meNicole Fornabaio/Rd.com, enterlinedesign/shutterstock
Lintala admits that, as the mother of a child on the spectrum, this type of comment not only makes her feel awkward, but it makes her embarrassed for the person saying it too. As a clinician, she handles these types of comments very 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?’ This leads to a sincere exploration of their concept of autism, and gives me the opportunity to gently break down stereotypes.” 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 autistic individuals. In other words, there is no true 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.