Autism

10 Things A Person With Autism Wishes You Knew

cropped-img_05221.jpgI’m Still A Person

“Autistic people love to swim”. I have heard this from special ed teachers, aides, speech therapists and family members. My son hates the water. This has been going on for 23 years so I hold no hope that will ever change. He is a person first and foremost. He likes girls, being invited to parties, to bike, to read, to play “Clash of Clans”, to travel, and dine 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 an individual like everyone else.

My Senses Can Be Out Of Whack

So much of my son’s unusual behavior results from a cropped-img_0061.jpgneurological system that processes stimuli incorrectly. Odors, from perfume, to foods, to plants can result in nose holding and nausea. My son is also particulary sound sensitive with static from radios, the noise of high winds and off-key singing actually causing pain. The texture of rough clothing, like jeans, hurts. Textures of certain foods can cause gagging. Lights, like bright sunshine, can cause pain.

Not everyone with autism has these problems just like people with migraines do not 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.

The Difference Between Can’t And Won’t

Difficulty with language is one of the core symptoms of autism, both speaking and listening. Some individuals with autism, will also have cognitive impairment. Often people with autism are labeled as uncooperative because they refuse to “join in”. 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 doesn’t understand if he refuses to comply. We work on individual skills a lot before we put them together to try an activity. People with limited comprehension can still feel inadequate to the the task just like the rest of us. Once he has learned the skills required for the task, I then feel comfortable knowing he either doesn’t like that activity or he just doesn’t want to (think clean his bedroom). So much of the problems in life are simply misunderstandings.

I Am Literal

Years ago there was a mad cow outbreak and we decided to temporarily stop eating beef. Scan 26I 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 “kicked 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 keep my language as exacting as possible to lessen his confusion.

I Am Visual

80% of the information we take in on a daily basis is visual. People with autism are no different. What they have tremendous difficulty doing 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.

Please Focus On My Strengths

All of us have weaknesses that we work on. People with autism usually have many. cropped-img_0887.jpgMost of us don’t spend all day trying to ameliorate our shortcomings. It’s 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. He loves carpentry so we bought a small vacation cottage that we are rehabbing. He is in heaven.

People with autism aren’t diseases that need to be cured. They are people with some extreme challenges and unique interests and strengths just like the rest of us. They deserve to be treated as such.

Help 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 children got help as young as possible. They did a good job. Dr. Catherine Lord, who was heading the project, could diagnose a child as young as 12 months as having autism.

One of the activities we volunteered for was a “play session”. At the time my son was six and were were asked to play with toys together while clinicians observed. My son had no facility for 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 seem like “child’s play” for my son they were not. Imagine how much more challenging the social stiuations 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, for my son at least needed to be directly taught. We have been laughed at, cursed at, and have had mean epithets hurled at us for our lack of understanding. Instead of condemning, your help would be greatly appreciated.

Meltdowns

No parent is unfamiliar with a temper tantrum. The difference for us is that they can go on for far longer and for what seems incomprehensible reasons. My son once had a very loud, and as I’m sure many of you can relate to, temper tantrum at the checkout of a grocery store. 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 to handle frustration and disappointment better, please be kind. 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.

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 help 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 and 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 it is or that you are seeing the situation correctly. Always assume that “what we have here is a failure to communicate” what they want or mea in a way that is easy for the rest of us to understand.

Just Love Me

Sometimes we parents get so caught up in curing our child,

DSCN0471
Zack’s 21st birthday celebration in Vegas

worried as we are about their future, that 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, or skip vacations entirely, or 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.

Ā© 2015 Chantelle Porter

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3 thoughts on “10 Things A Person With Autism Wishes You Knew

  1. What a great post. You had me hooked with your first sentence -all autistic people love to swim. I have a daughter who is 7 and a son who is 5, both autistic and I’ve lost count of the number of times I’ve been told that going to the pool will be therapy. They love the water but hate the echo of the building – the noise just seems to carry and drives them mad. My son would spend his time in the water flapping his hands and repeatedly counting. Not so much of a therapy! In fact every point you made I can relate to with both of my children. I’ve learned not to make my sentences too long and detailed (especially with my daughter – she struggles with language) and to not say things that are easily misunderstood. I know when my son refuses to change out of his pyjamas it’s because his regular day clothes will irritate him and I can spot a sensory overload meltdown a mile off. My daughter’s life is ruled by her anxiety and it’s sad to watch.

    I love that you are able to support and encourage Zackary on his interests and celebrate all the things in between. I’m getting there slowly but it’s been a steep learning curve.

    Liked by 1 person

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