How many parents have heard: “He’s autistic? But he acts so normal!” Many respond this way to hearing a parent reveal a diagnosis because they think it would be considered a compliment. This statement emphasizes how someone looks a certain way and doesn’t address or acknowledge the state or experience of being autistic.
As psychologists learn more about the symptoms of autism and how they manifest themselves, the public, in turn has better recognized those affected, and more people are talking about it. Despite this increased “awareness” of what autism looks like, many people still fail to understand how the full range of symptoms affects how autistic people experience the world.
A lack of understanding can lead to unintentional offensive responses when first hearing about someone’s autism diagnosis. Much has been written by parents of autistic children trying to raise awareness of what these inappropriate responses are and how they make the parents feel. I’d like to approach this topic from a slightly different angle and explore how these inappropriate responses make the autistic child or adult feel and how we can best discuss autism with and among autistics.
What Not to Say When Hearing About Someone’s Autism Diagnosis
Below are several examples of what you might hear after explaining to another adult that your child is autistic.
“Does your child have a special talent?”
Not all autistic people have special savant-like talents. The media has helped perpetuate this stereotype (most notably with Rain Man) creating an unhealthy pressure for people on the spectrum who perhaps are trying to live up to what many people may believe is the only redeeming quality of autism. Asking about special talents can sometimes make parents and their children uncomfortable. It also makes the asker appear as if that is the only thing he or she is interested in, as if the autistic child is a curious specimen for examination and evaluation of how he measures up to their preconceived notions of what autism should look like, rather than a human being.
“I never would have guessed, he acts so normal. He must be high functioning.”
I’ve written about the problem with using labels like high and low functioning before. Simply put, the terms aren’t as descriptive as people like to assume when they use them. Many people tend to label autistics as “high functioning” if they are verbal and appear “normal” at first glance (displaying no obvious, regular stims). This label unfortunately allows people to dismiss more hidden, but still significantly disabling symptoms. It also makes autistic people feel as if they are “close,” but haven’t quite yet made it into the exclusive neurotypical club of humanity where everyone is “fully functional” (Read about Ben discussing how these labels make him feel).
Furthermore, using words like “normal” when referencing nonautistic behavior is never a good idea. It can be offensive to both parents and their autistic children and interpreted as a constant reminder of how society tries to measure them up against what is typical. They understand that normal is whatever typically happens in their household and that loving each other and developing their human potential is the most normal thing humanly possible. It’s not necessary or always helpful to constantly compare autistic children to neurotypical ones, and using the “N” word forces this comparison.
An extremely common response upon first hearing about someone’s autism diagnosis is to say “I’m sorry.” Many autistic self-advocates have spoken about why this response is very hurtful. Imagine overhearing someone tell your mother or father that they were sorry you were you. It’s wearisome to hear the public act as if who you are isn’t good enough, that there is something fundamentally wrong with you. The apology response typically comes with good intentions of offering sympathy for a situation they know little about and they assume must be difficult; however, I would remind people to be aware of the autistic individual and your role in shaping his or her understanding of how the world interprets autism. It would be great if after an “I’m sorry” response, parents would reply, “Don’t be. We love our son/daughter as an autistic person, not as a person hiding underneath the cloak of autism.”
“I know someone who had autism but was cured with a special diet.”
Offering parenting advice can be tricky regardless of whether or not the child has special needs. However, unsolicited advice about raising autistic children from parents who don’t have a child on the spectrum is often poorly received. One of the reasons for this is because most parents of special needs children are already plugged into all of the personal and professional channels they think will help their child. Secondly, because autism is such a complex and diverse condition, each person on the spectrum has unique combinations of needs. While there is a small chance the advice will be useful, it probably won’t be, and they have likely already investigated it.
Again, when looking at how this sort of reaction might be interpreted by the autistic, it’s important to avoid words like “cure.” Advice aimed at trying to cure autistic children perpetuates the idea that there is something wrong with them that needs fixing. Rather, let’s work for ways to help them cope with the most disabling symptoms of autism while supporting an authentic autistic identity.
Talk to the Child Rather Than About Him
If the child is old enough to understand what autism is and can communicate with adults, it may be appropriate to address him or her with any questions or comments directly. This is especially important if the child or adolescent will overhear and internalize the conversation. If a child hears you speak negatively about autism or act as if it must be hard for his or her parent to raise an autistic child, this can damage their self-esteem or confuse them. This can also be subversive to a parents’ efforts to promote confident autistic identity development. In general, people don’t like others to talk about them when they are in the same room. Don’t assume that autism disables a person from hearing and understanding negative expressions.
Appropriate Responses Upon Hearing About Someone’s Autism Diagnosis
Some people may be very aware that there are plenty of inappropriate ways to react to someone else’s autism diagnosis, but they don’t know alternative ways to respond. Here are some ideas:
How is he/she doing?
This is a common question asked of neurotypical children and is appropriate for autistic children as well. This allows parents the opportunity to open up about specific strengths or weaknesses, if desired, and encourage their children to discuss their lives as well.
How can I help?
When people let the parents direct when and in what form the help comes, the efforts are much more fruitful than unsolicited suggestions. This question allows parents to discuss specific accommodations others can make in their own homes or wherever they interact with the autistic child. This may include environmental changes to accommodate for sensory sensitivities or behavioral changes to help improve communication and general comfort whenever they are together. This discussion can give families more safe options for socialization.
He/She Appears to Do “X” Very Well.
This is another observation people typically make of nonautistic children and offer as a compliment to both the child and parent. It’s also another way to allow parents to open up about other specific strengths or obstacles. There is enough negative information about autism available in the media, so it’s nice to see people outside of autism families noticing positive traits in autistic children.
How We Talk About Autism is Important
The language of autism can have a profound impact on society perception and the self-confidence of autistic people. Parents of autistic children and autistic self-advocates have been speaking about this for years. As autism rates increase and the public becomes more aware of the prevalence and symptoms, it will be important for unaffected families to understand the impact of how they talk about autism. Autism presents many challenges for families, but embracing autistic people and celebrating and supporting their worthy humanity is crucial for individual and societal development.