The Denver Autism Wheel

Posts Tagged ‘understanding

It’s a pet project of mine to learn more about the creative writing process (I’ve been a journalist, a blogger and a technical writer many years, but I have not tried my hand at fiction), so I got a book on writing believable characters based on personality profiles, and amongst them, I found a profile for a person with autism and nearly swallowed my gum when I read some of the assumptions (the book was written by a writer who is also a psychologist, BTW).
Now, before I elaborate on these assumptions, it is worth noting that the copy of the book I have was published in 1999. This was the year before Chris was born, and I say with some pride that a lot has changed in that time, regarding theories of parenting children with autism, psychological approaches to autism and our medical and scientific understanding of what it means to live with autism in a predominantly neurotypical world. However, there is a long history of research into autism which has confused the lack of ability to communicate effectively with the lack of desire to communicate effectively. These are historical misunderstandings about autism, and history is tough competition.
Assumption 1: the person with autism dislikes social rules, behaves disobediently and defiantly. It has long been my experience that it is quite the reverse. Individuals with autism appreciate social rules and try very, very hard to follow them. Rules make unpredictable social moments more predictable. And it’s that effort to adhere to social rules that often makes teens with autism the target of abuse and bullying because they don’t know that their peers expect them to follow adolescent rules that dictate they defy the adult rules. My retake on the assumption is this: the person with autism relies on social rules to help establish context but can behave unexpectedly if the rules he understands come into conflict with one another.
Assumption 2: the person with autism is not deterred by fear. Studies have established that a staggering majority (over 80%) of adolescents with autism also suffer from anxiety and/or depression. A lot of the anxiety I’ve seen 12 year old Chris display has to do with misunderstanding context or nonverbal cues. He has always hated attracting negative attention to himself, and that includes becoming a spectacle because he’s having a tantrum. It’s humiliating to him to lose control of his emotions in front of others. So again, it is my experience that the standard is actually the opposite of the assumption: the person with autism is routinely deterred from expressing himself or engaging with others because of fear.
Assumption 3: the person with autism is mistrusting and untrustworthy; lies. Chris does not lie. There are really good reasons for it. 1) Lying is breaking social rules, 2) Lying requires an understanding of what makes a plausible lie, and he lacks that skill (he tries to lie sometimes, and it’s completely apparent that he doesn’t know how to make a lie work), 3) Lying does not make logical sense; it requires a moral flexibility that is way too much work to be practical for him. And as for trust, he has to trust people to be honest and kind to him. It takes an act of deep betrayal to teach him not to trust a person, and most people don’t have the heart to do that to him. So, again, the observation that belies (hee hee) the assumption, is this: the person with autism is genuine, trusting others even to his own harm.
Of course, it was telling to read this profile, offered by a mental health professional over a decade ago. Keep these facts in mind:

  1. 1 in 88 children is affected by autism
  2. Boys are 4 to 5 times more likely to be affected
  3. If you know 7 people, the odds are that one of them is personally connected to autism

Part of the revelation to me was that these assumptions might still sound reasonable to the other 6 people who aren’t personally connected to autism. Considering the coverage of a recent school shooting, where reporters bandied the idea autism was a contributing factor, misinformation still abounds. Fortunately, our community of self-advocates, parents, providers and educators stepped up to dispel those myths. Individuals with autism are far more likely to be the victims of premeditated acts of violence than the perpetrators. Period. One of the reasons I keep writing and posting and acting as an advocate for Chris is to try to change these mistaken assumptions. We are all on a similar path, and the more we are able to reach out to others, the greater our understanding.

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I had a really great conversation this week with Lorri Park at the Colorado Autism Society. We know that we must approach our auties with compassion and no small amount of patience. But she said that our compassion must extend in all directions. We have to include everyone in our capacity to be patient and understanding. This is going to be a bit of a rant, so bear with me.

We must be patient with our auties. We must understand that, just because they view the world through a different set of glasses, their view is no less valid, nor is their desire to connect with it. We must involve them in the world, provide opportunities for interaction, connection, contact. And, yes, compassion for them includes letting them fail sometimes. Chris still doesn’t have a fantastic facility for maintaining conversations. That doesn’t mean I hide him from them. On the contrary, I try to find honest (and sometimes “safe”) forums for him to practice.

We must be patient with ourselves. The families of autistics are often spectacles. That’s just a fact. Autism can make us want to give up human contact ourselves because it can be so darn difficult to enjoy a nice meal in a restaurant when you have to calm somebody who gets anxious and has outbursts in unfamiliar places. What’s the solution? Go out more…not less. Start in safe places, like Beau Jo’s pizza. The Autism Society of Colorado has a Beau Jo’s night the first Wednesday of every month. They expect families with autism. It’s safe, and it’s a way to start making connections (you included) with people in a safe environment. And we must realize that, just because we do what we have to do because this is our beloved child/sibling/spouse, we are not saints, perfect or robots. As much as we love them, we’re not specialists in intervention therapies. We’re parents, siblings, caregivers. We are human. We have a list of people and facilities in the sidebar to the right who can help provide a sanity check. Use them: the Autism Society, the ARC, Club 4 Kids. If you have others and want to share, leave a comment and let us know! It’s OK not to know everything, it’s OK to lose your patience, it’s OK to lose your marbles for a minute or two. No, seriously. Think about what you’re up against. It’s OK. Check out the Gimme a Break program at the Autism Society. Have a movie night while somebody trained in autism respite care watches the kids. I promise, the house will still be standing when you come back. Or bring them to Club 4 Kids (they’ve made it plain to me that they welcome kids on the Spectrum). Let them enjoy a safe evening with other kids while you recenter yourself. It’s OK. Nobody should expect to be able to hold back the floodwaters 24/7/365.

We must be patient with teachers and special ed staff. Think about what they’re up against: increasing class sizes, job insecurity, parents yelling on one side and the principal yelling on the other, low wages, long hours of teaching and planning and grading and conferences and field trips and meetings and ongoing training. Yet somehow, we all remember at least one teacher whose dedication sparked for us the love of a subject we never thought we’d love. They have a gift, a passion to reach out and touch the minds of their students. With shrinking education budgets, they often buy their own paper, chalk and tissues for the classroom (on a teacher’s salary, mind you). They work tremendously hard to make a difference in our kids’ lives.

We must be patient with strangers. We’ve all seen the air quotes around autism. We’ve seen the rolling eyes, heard the indignant humphs and the “why can’t you control your own child?” comments. Yes, it’s shortsighted, thoughtless and inconsiderate, but if you think about it for a minute, how much of their outbursts are just as socially inappropriate, reactionary and fearful as the stuff your child does? They don’t understand, either. There’s still a lot of misunderstanding about autism, what it looks like and what it means. Unfriendly strangers deserve the same patience and understanding we extend to other people. Remember, we must expose people to our kids with autism as much as we must expose our kids with autism to people. We have to get used to each other. The learning opportunities abound (she says, waving her arms). Change is scary, but that doesn’t mean it must be avoided. Everybody has to learn to live together. It’s a small planet.

Chris knows he has autism. He’s known almost as long as we have. I don’t think we spent much time worrying he’d use it as an excuse to be lazy in class. He had been receiving services as a “preschooler with a disability” since age 3, and it hadn’t occurred to him to milk it then…

Add to that the competitive nature of his NT younger brother (for whom being the younger brother always seemed like evidence of the Universe’s cruel sense of humor). He doesn’t much want to have autism because it complicates things and slows him down where it doesn’t slow down his peers (or his competitive younger brother).

So Chris knows his brain is different, that it processes information in a way that typical people’s brains don’t. That means it’s hard for him to follow conversations, stay focused in class and sometimes even finish a meal sitting down. He’s used to it. But it’s not so simple as accepting who you are and working to understand other people’s perspectives.

He seems to have gotten used to the idea that things can’t be as easy as they look. He’s used to not trusting his own judgment. He’s used to assuming that his first reaction to just about anything is going to be wrong or inappropriate. And that is a huge problem. How much self esteem and confidence can you have if everything you do turns out to be wrong, even if you’re right about something (read: “wrong about being wrong”)? That pop you just heard was the sound of my brain exploding. No wonder depression and anxiety are so common among individuals with autism!

And then something happens to make me realize just how powerful Chris’ brain is. I’ve mentioned before that he doesn’t lie very often because he is bad at it (no innate sense of what makes a lie plausible, and deficits in short term recall of who he told what make it pretty futile). Add to that his “tells.” Ask him to run lines from cartoons, and he’ll have you in stitches. He has the lines, voices and inflections down cold. Ask him to do times tables, and his nose plugs up. He actually starts having allergic reactions to schoolwork, including congestion, watery eyes, sneezing fits… Now, the mind is a powerful tool, and he does suffer from seasonal allergies, but I started to notice that they got exponentially worse as the homework got rigorous. Hmm.

So I did a little experiment. I mentioned to him that it seemed his allergies got worse when he had to do something he didn’t want to. He had no idea that’s what was happening, which I don’t doubt, but he’s also remarkably in tune with his own body. I tell him that he doesn’t have to sneeze, and if he stops, he’ll get a reward (nothing major, just wanted to see what would happen). Lo and behold, the sneezing stops like that [I’m snapping my fingers ;-)]. I wait. No sneezing. I wait a little while longer and then mention it to him. I remark that he hasn’t sneezed in quite a while, but his homework is about done. What a remarkable reaction: he was thrilled. Positively thrilled. He didn’t realize he could control his psychosomatic reactions. I don’t think he’d realized until just then that he had that decisive kind of control over his own mind and body.

I tell him there is nothing wrong with his brain. Yes, memorizing times tables takes longer for him than for classmates. Yes, he needs questions repeated. But he has a beautiful, perfect, powerful autistic brain in his head and can do anything he wants to if he wants it enough and works at it. I don’t think he put “beautiful,” “powerful” and “autistic” together until last night when he stopped his own sneezes.

It’s funny what it takes sometimes, but as one of his favorite Beatles, George Harrison, insists, “It’s all in the mind, ya know.” I hope it helps him find some more confidence in himself and his judgment. Like all moms, I know my kid can do whatever he wants to do if he puts his mind to it ❤


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