10 Things People With Autism Wish You Knew
Autism is a neurological disorder that affects an individual‘s ability to speak and understand language as well as their comprehension of social situations and norms. Present from birth, it is a lifelong condition with no known cause or cure. It is poorly understood—medically and socially.
1. I Am a Person First
I have lost count of the number of times a therapist, friend, or family member has said, “Your son has autism? He must love swimming.” My son hates the water. This has been going on for 23 years, so I hold no hope that anything will ever change. He is a person first and foremost. He likes girls, being invited to parties, cycling, reading, playing Clash of Clans, traveling, and dining out. This all seems pretty typical to me.
I don’t know why we as a society tend to see people as their disease rather than as an individual. I think it helps us understand things that are intellectually and emotionally difficult to process. My son is as similar to other people who have autism as are two diabetics. Similar symptoms? Yes, but he is still a person like everyone else.
2. My Senses Can Be Out of Whack
So much of my son’s unusual behavior results from a neurological system that processes stimuli incorrectly. Odors—from perfume, to foods, to plants—can result in nose-holding and nausea. My son is also particularly sensitive to sounds like static from radios, the noise of high winds, and off-key singing, which actually cause him pain. The texture of rough clothing, like jeans, can hurt. Textures of certain foods can cause gagging. Lights, like bright sunshine, can cause pain.
Not everyone with autism has these problems—just like not all people with migraines have the same altered neurological experience. So if you see someone covering their eyes, holding their nose, or covering their ears, they may be having difficulty coping with painful stimuli.
Did You Know?
Boys are five times more likely to have autism than girls.
3. The Difference Between Can’t and Won't
Difficulty with language—both speaking and listening—is one of the core symptoms of autism. Some people with autism also have cognitive impairment. They're often said to be uncooperative because they refuse to “join in." However, people who don’t know how to play tennis don’t ordinarily jump into the middle of a match. People who can’t dribble don’t enjoy taking the ball down the court.
I always operate under the assumption that my son just doesn’t understand what I'm asking him to do if he refuses to comply. We work on individual skills a lot before we put them together to try an activity. Just like any one of us, people with limited comprehension can still feel unconfident in performing a certain task. Once my son has learned the skills required for the task, I then feel comfortable knowing he either doesn’t like that activity or just doesn’t want to do it (think cleaning his bedroom). So many of the problems in life are simply misunderstandings.
4. I Am Literal
Years ago, there was a mad cow disease outbreak, and we decided to temporarily stop eating beef. I explained to him that beef came from cows, so no more spaghetti for awhile. He thought it was hysterical that we had been eating “cow spaghetti”—as if an actual cow was served on a plate.
Euphemisms like “Johnny-on-the-spot” or “kick the can” lead to confusion and endless questions. Where is the spot? Why is he on the spot? Who is Johnny? What kind of can? Did it have food in it? Is it a game? I always try to choose my words deliberately to lessen his confusion.
5. I Am Visual
Eighty percent of the information we take in on a daily basis is visual. It's no different for people with autism. What they have tremendous difficulty with is listening. My son has been reading since he was four, yet his spoken language lags far behind. When we go to the doctor, I bring a pad and paper to take notes for him to read. I want him to understand what the doctor is saying. All our activities are written down so he knows what’s happening when. Closed captioning is always on our TV. When learning a new song, he can’t get the lyrics by listening. We always print out the lyrics for him.
While it may seem like a lot of work, the benefits that result from reduced confusion and lessened frustration are worth the time and trouble. If you do have a conversation with someone with autism, keep your sentences short and concrete. If you are giving directions, write them down.
Did You Know?
The CDC estimates that as of 2018, 1 in 59 children have autism. The rate was 1 in 68 in 2016.
6. Please Focus on My Strengths
We all have weaknesses that we work on. People with autism usually have many. Most of us don’t spend all day trying to ameliorate our shortcomings. It would be demoralizing. We have always tried to strengthen his interests and abilities. It builds confidence and a feeling of self-worth. Zackary loves geography, so we studied all 50 states and then proceeded straight to the countries. He loves maps and is a reliable navigator. We also know that he loves carpentry, so we bought a small vacation cottage that we are rehabbing. He is in heaven.
People with autism don't need to be cured. They are people with some great challenges and unique interests and strengths—just like the rest of us. They deserve to be treated as such.
7. Help Me With Social Situations
When my son was quite young, we participated in a study at the University of Chicago. They were training practitioners to detect the signs and symptoms of autism in the very young. They hoped to ensure autistic children could get help as early as possible. They did a good job. Dr. Catherine Lord, who was heading the project, could diagnose a child as young as 12 months with autism.
One of the activities we volunteered for was a “play session." My son was six at the time, and we were asked to play with toys together while clinicians observed. My son had no inclination to play at that time, so he repetitively stacked blocks into a tall tower and knocked them over again and again. Despite my best intentions to get him to join me in play, I was not successful.
While toys might usually seem like “child’s play,” for my son, they were not. Imagine how much more challenging the social situations must be for adults with autism trying to navigate life after school. We teach and rehearse all anticipated settings. From going to the dentist, to playing board games, to ordering in a restaurant— everything. At least for my son, he needed to be directly taught. We have been laughed at, cursed at, and have had mean epithets hurled at us for our perceived lack of understanding. Instead of condemning us, your help would be greatly appreciated.
8. Be Understanding of Our Meltdowns
No parent is unfamiliar with a temper tantrum. The difference for parents of an autistic child is that the tantrums seem to happen for incomprehensible reasons and can go on for far longer. My son once had a very loud temper tantrum at the checkout of a grocery store (as I’m sure many of you can relate to). While he was throwing his fit, a couple of elderly women were loudly complaining about what a terrible mom I was to have such an awfully behaved child.
Sometimes, the challenges my son faces in life build up and overwhelm him. Should he have a meltdown? No. Can I understand why this is happening? Yes. While we are actively helping him better handle his frustration and disappointment, please be kind and understanding. If you really want to insert yourself into our experience, please simply offer your help and not your condemnation. He is having a hard time coping and so are we. We would greatly appreciate your help.
9. Behavior Is Communication
As our speech therapist always said, “You can’t not communicate.” All behavior is communication. The challenge is trying to figure out what the person is saying and helping them say it.
When my son was little, he loved Cheerios, or so I thought. He ate them for breakfast every day. Every day he would have a fit when he got them. Obviously, he couldn’t say what he really wanted, and I couldn’t figure it out on my own, so I put pictures of his favorite foods on the refrigerator. When he asked for Cheerios, I would bring him to the fridge and have him repeat what he wanted. Naturally, he didn’t want Cheerios. He actually picked a wide variety of foods for breakfast instead of the same thing each day.
Just because a person’s behavior seems “aberrant” doesn’t mean that it is or that you are seeing the situation correctly. Always assume that “what we have here is a failure to communicate.” They may not be able to convey their wants and intentions in a way that is easy for the rest of us to understand.
10. Just Love Me
Sometimes, we parents get so caught up in curing our child that we miss enjoying the present. As worried as we are about their future, our homes become somewhat like basic training—militaristic structure and rules that suck the joy out of life.
Despite their challenges, people who have autism deserve the same love and respect as everyone else. I have seen so many friends not celebrate their child’s birthday with a party, skip vacations entirely, or even refuse to go to the movies until their child was “better."
Autism is a lifelong condition. Love your child and celebrate their milestones and successes—just like everyone else does. They deserve it. It may look different from the picture you had in mind, but don’t skip it. Love them as they are.
© 2018 Chantelle Porter