Understanding autism isn’t something that everyone is going to be good at. Many of us have known of its existence for some time but weren’t necessarily impacted by it or had much contact with the subject save for an acquaintance or two. In our family we welcome questions with open arms because we know that learning isn’t done without some guidance, and what better guidance than those with intimate knowledge of the subject itself? Asking questions to gather information is one thing, doing what these next few people did is an entirely different story. In the effort of dispelling some myths or misnomers, here is a list of what not to say to anyone with a close connection with autism.
1. “But he seems so smart!”
This is a rather common exclamation, usually done in disbelief, that many parents of autistic children hear. Aside from the sometimes rude inflection of this sentiment there is an underlying issue with the fact that it implies that those with autism have an intellectual disability, which they do not. Autism itself is a developmental disability which dictates how children and adults process the constant flow of stimuli from the outside world. It in no way harkens to their intellectual abilities, even those that are nonverbal have been found to have an average or above average intelligence level. For example, Carly Fleischmann who is nonverbal, has gone off to live in dorm housing as well as written a book and started an online talk show where she has interviewed the likes of actor Channing Tatum. She uses a speech aid, is quick as a whip, and breaks down many of the stereotypes people have about those with autism and its varying degrees of “disability.”
2. “But he doesn’t look autistic.”
This is yet another exclamation usually made in disbelief which is often times followed by an intense look at your child. There is no “look” to autism and there never has been, this is just one of those thoughts that really has no merit. Stimming, or self-stimulation, is a sensory seeking technique used by many on the autism spectrum as a way to cancel out the sensory input they are receiving at that time. Humming or guttural noises may be a way for a person with autism to control the noises around them and can be used to self sooth. Flapping or the petting of something soft, often a blanket or special stuffed toy, are also ways of stimming and controlling the input they are receiving from the outside world. As one can imagine these behaviors might draw the eye of passers by but they are in no way implemented by everyone on the spectrum and are not necessarily an identifier of the capabilities of that individual.
3. “But he makes eye contact.”
Children and people with autism can and do make eye contact, they just feel uncomfortable doing so. Eye contact use to be a deciding factor in the diagnosis of autism but it isn’t anymore, the avoidance or dislike of eye contact is still noted in the evaluations though. While eye contact is a known part of nonverbal communication it isn’t understood by many on the spectrum and causes them to feel uncomfortable or even anxious. My son will make eye contact but if we ask him why he does it even though we know he hates it he tells us that it’s because he knows it is what’s expected of him. His eye contact, and that of anyone on the spectrum, does not mean they are less autistic in some way. It just means that they have conditioned themselves to do something that they aren’t particularly fond of.
4. “Does he have any special abilities?”
While I may view my son’s autism as a super power, one that allows him to see the world in a way that others may not, it doesn’t actually give him any super human ability. He has a fixation with math and is advanced for his age but autism hasn’t made him some sort of super genius at 5-years-old. Think of it like anyone else, we all have something that we are really good at or really focused on. With autism that fixation might become more of an obsession but it often times stops there. The fixation will be lived out, either in part or throughout their entire life, and can lead them to gain high marks in school or choose a job in that field. My kid might do the mathematical calculations for NASA launches some day or he could become an accountant but it isn’t all like Rainman or A Beautiful Mind.
5. “Where does he fall on the spectrum?”
Autism doesn’t really work like that, there isn’t a linear graph that depicts the curve or autism and where each person fits on it. It’s more like a color wheel in regards to the fact that each person can have many different characteristics of autism to varying degrees and have varying difficulties associated with all of that. Someone who is verbal may be severely over stimulated by loud noises or bright colors and thus have a harder time with being outside than someone who is nonverbal but who doesn’t have a particular aversion to sounds or colors. It’s all about the individual and how their autism affects them and the way they interact with others and the world as a whole.
6. “So is he high functioning/low functioning?”
There has been some debate as to whether the terms high functioning and low functioning are correct in their usage. The autism community seems to be leaning away from their use and in turn are using terms that are not ability based. High functioning and low functioning do no properly describe people with autism and have driven wedges within the community itself as a way of distinguishing which children need more care or which children aren’t “autistic enough” (yes, we have had that thrown at us on a number of occasions). Functionality is like the spectrum, it isn’t linear and can fluctuate from day to day or hour to hour. My son was completely fine with having a water balloon fight the other day but did not do well with it the day after that. He couldn’t handle the cold water or the way it felt running down his back and out of his hair. He stopped talking for a number of hours and just pointed and grunted when he wanted something. He was so overstimulated that he stopped being able to fully communicate, but that was just for a time. Some other children have been known to be nonverbal but then say “mama” or “no” and that’s it for that day, or that week. It’s such an individualized thing that functionality doesn’t even begin to encompass all that goes into how a child processes things.
7. “So, you’ll be caring for him his whole life?”
The short answer to this is maybe but that’s technically the short answer for every parent out there. No one knows what their child will be capable of and a child with autism is no different in that regard. Every autistic child has their own threshold for what they can accomplish and that threshold will change with age and therapies. We don’t know what our son will be able to do as an adult but we do know that there will be nothing that keeps us from helping him reach his full potential. We’ve been told that we are lucky because he’s verbal and interacts with the outside world. What people don’t see is that his verbal skills rest almost solely on echolalia, the act of repeating nearly anything heard, and that his interactions cap out at about an hour on a good day before it’s meltdown city from over stimulation. This may last his entire life or we may be able to get him into a therapy situation that teaches him coping mechanisms and self soothing techniques. As mentioned before, Carly Fleischmann is nonverbal but has branched out significantly due to her parent’s focus on therapies and helping her find the outlets she needed.
8. “He probably won’t be able to hold down a job, right?”
Again, this is one of those questions with a short answer but this one is I don’t know. No one knows what any child will be capable of in the future so I can’t answer that question for anyone. I do know that Carly Fleischmann has a talk show, Daryl Hannah and Dan Aykroyd are both very successful actors, Marty Balin helped found the rock group Jefferson Starship, and Lewis Carroll was a world renowned author. While these are all examples of well known individuals and not everyone, regardless of their diagnosis, can become so well known these are examples of what someone can do if they just set their mind to it. With the proper support system in place we have no idea what our children can accomplish.
9. “Can’t you control your child’s tantrums?”
Tantrums and meltdowns are two totally different things. A tantrum is categorized in child psychology as a want based outburst that has a specific outcome in mind, i.e. getting a toy at the store after being told no. A meltdown is a reaction of a child being over stimulated, as with autism, and having no other release valve but to essentially emotionally implode. With a tantrum you can usually end it by taking the child out of the situation as they will no longer have that specific outcome in front of them anymore. A meltdown doesn’t subside with a change of scenery, though it will benefit your child regardless, and can last for hours while exhausting the child and over stimulating them further. The best method of attack for a meltdown is to watch for signs of overstimulation and focusing their attention on something else or leaving that particular situation before the meltdown can start.
10. “They just need a good spanking.”
Aside from the fact that parenting is hard enough without the unwanted opinions of others, spanking a child with autism will not remedy the situation. Regardless of someone’s stance on the usefulness of spanking, autism isn’t something that you can “spank out” of a child as it isn’t a want based reaction that is causing the issue. There isn’t much else on that topic other than to just not suggest it because it honestly isn’t our place to tell another person how they should parent their child.
11. “It’s just an excuse for them not to do something” (i.e. grow up, deal with life, clean up).
This is a fundamental untruth and belittles the fact that autism is a developmental disability and changes how the child or person deals with the outside world. My son can dump a bunch of blocks on the floor and if I ask him to pick them up he will have a meltdown, not because he doesn’t want to clean up but because he literally doesn’t know where to start. He sees all of the different shapes and colors and can’t choose a starting point and becomes severely overstimulated. Having too many options is something that many on the spectrum have to deal with on a daily basis and this can cause extreme mental and emotional fatigue. Having fewer options or giving them a starting point, like telling my son to start with the blue blocks, can be the difference between getting the blocks picked up and not being able to function for the rest of the day.
12. “My aunt’s/cousin’s/dog groomer’s/sister’s/friend’s/nephew’s kid has autism so I know all about it.”
I can assure you that you in fact do not know all about autism though I’d like to know how you remembered the lineup of all those people. On a more serious page, none of us “know all about it” when it comes to autism, there’s just no way to know it all because each person with autism is so different. Autism is a spectrum disorder and everyone with it falls on that spectrum at a very specific place and there isn’t anyone else out there that’s just like them. We have a favorite saying in our house, once you’ve met one person with autism then you’ve met one person with autism. Don’t just assume that you know what brand of autism my son has because you’ve met someone who knows someone who has a similar brand to my kiddo. They are all different, they are all unique, and they are all individuals.
13. Not speaking to the person or acting as if they aren’t there.
This one isn’t necessarily something that is said to those with autism but actually something done to them. Many people on the spectrum, often those that are nonverbal, are spoken about rather than spoken to. This often relates back to people thinking that autism is an intellectual disability rather than a developmental one but it has been challenged on more than one occasion. Carly Fleischmann’s parents even talk about being horrified when Carly started typing to them as a means of communication because they realized that she had understood everything they had said in front of her. They hadn’t realized that she could understand what they were saying and often times talked candidly about her diagnosis and abilities while she was in the room because they had no way, at the time, of truly understanding her intellect and her abilities. It doesn’t matter if a person with autism doesn’t make eye contact, is nonverbal, and rocks in the corner away from everyone else, they should be treated just like any neurotypical person when in regards to communicating with them. Ask them questions, you might not always get an answer but that just means that there is too much going on for them to be able to verbalize themselves.
While most of these questions and interactions aren’t meant to be invasive or downright rude it is important to note that these things do come off in that manner. Rather than phrasing the question like “he probably won’t ever hold a job” ask about his interests instead. Ask about hobbies or a book they might be reading. Ask about school and if they like any one particular subject over the others. Engage the child and the parents rather than alienating them. Don’t focus on what they might not be able to do and instead ask about all the things they can do and have accomplished. The tone of the question will set of the tone of the conversation so keep that in mind and realize that some of these statements can come off as accusatory or hurtful because of the negative connotations that the stereotypes might invoke. Above all just remember to be polite and to ask questions with respect and an open mind.