A Word on Words

The words we choose create understanding, and in turn they build connections and lead to community. They are most people’s primary means of interacting with others in the world.

I’m a word nerd. I love language and the ways that different words can be used to convey precise meanings. I try to choose my words carefully and to remember that they represent me, my character, and my intellect.

For those reasons, I am changing some of the terminology I will use to describe Cheeks, his autism, and other autistics like him. It doesn’t come from a need to be politically correct, it’s about being both accurate and respectful in the way I use my words.

I will not say that Cheeks has “special needs.” Instead, I will say he is disabled. His needs are no different than anyone else’s needs. He has a need to be loved, educated, and understood. Nothing about that is special, it makes him exactly like everyone else. Describing him as having special needs is suggesting that his needs are outside the norm. He does however, have a communication, sensory and motor planning disability that requires support in order for him to fully access the world around him.

Perhaps just as importantly, having “special needs” does not provide him with any of the legal protections he may require in his lifetime. Being “disabled” does.

I will not say he, or any other autistic, is “nonverbal.” Instead, I will say he is unreliably speaking, while others may be nonspeaking or minimally speaking. The word “nonverbal” means to be without words. If Cheeks or anyone else is described as nonverbal, that means he has no capability of understanding language. Let’s say you had laryngitis and suddenly couldn’t speak. Does that mean you no longer understand when someone talks to you? Of course it doesn’t.

That’s because the part of the brain that controls speech production (Broca’s area) and the part of the brain that allows us to comprehend speech (Wernicke’s area) are separate, and represent two completely different neural functions. They aren’t even the same type of function, one is motor and the other is cognitive. Calling someone “nonverbal” because they can’t speak is both incorrect and derogatory. Remember when we called people who could neither hear nor speak “deaf and dumb?” That’s similar to saying nonverbal.

I will not say his autism is low- or high-functioning, or describe his autism with words such as severe, aggressive, or disruptive. Instead, I will discuss him only as the complex, multifaceted individual that he is, and I will use respectful language.

I’ve written more about high- and low-functioning here. It reduces a complex individual to a summation of how well they meet an arbitrary standard of normalcy. Even being placed at the perceived high end of that yardstick still means you are being publicly offered up for the world to assign a label to your capabilities.

There is also nothing about the adjectives above that someone would want used to describe their personality. Better to use the terms significant, complex, notable, compelling, meaningful, etc. The word used should be one that doesn’t insult him.

I will not call him “a person with autism”, I will say he is autistic. (For now.) This is another one I have discussed before, you can read that here. Some segments of the disability community do prefer person-first language, while others prefer identity-first. Mostly, the autism community leans toward identity-first, or “autistic person.” But any community is comprised of individuals with differing opinions, and so it’s not a universal preference. Ask, if you can, what someone prefers. One day, when Cheeks has more open communication, I will explain the difference to him and ask what he prefers.

And lastly, I will not condemn those who use the words that I won’t (mostly). It’s not my goal to tell anyone they are wrong with the words they choose. I’ve used all of these terms at one time or another, some recently. My goal is and has always been to educate, and to represent Cheeks in the world as accurately as possible. I say “mostly”, because Mama Bear sometimes shows up when Baby Bear is being inadvertently disparaged.

Language paints a picture, and it’s important to me that his picture is true and authentic. For now, I am both his advocate and his voice; so I have to get it right even more for his sake than for my own. And I believe that as the accepted language changes, so will the world’s perception of our autistic friends and family members.

 

 

 

Sh*t People Say, Homeschool Edition

Want to see an awkward moment? Tell someone you’re homeschooling. Usually the response is a polite smile and nod, sometimes with wide eyes or a raised eyebrow. When questions do come up, this is what they have been:

“Why?”

It was never something I wanted to do, but the gap between Cheeks’ abilities and the education he was getting at school had become too wide. I advocated within the system for years to correct that, knowing that he was surrounded by people who wanted to see him succeed. But there was no getting around the fact that the system measured his success by teaching him to behave and learn the way other students do. I don’t think that will ever happen. And even if it did, at best we were looking at a lot of time, effort and emotion to get there. The likely result would be him aging out of school before getting the chance to learn all that his peer group did.

“How has it been going?”

For me, it’s like having a newborn baby again. I’m isolated, overwhelmed, exhausted and confused. But I’m also discovering a whole new relationship, I’m giving him something only I can give him, and there are many moments of immense gratitude. Cheeks is happier than he has ever been, and focused on learning instead of compliance.

“How do you know what to teach?”

There are many curriculum packages available to the general public, and numerous web-based educational resources. But for now, I’m not using a curriculum guide. I want Cheeks to enjoy the process of learning again, so I’m temporarily allowing his curiosity to take the lead. All I have to do (for now) is offer a variety of topics and see what captures his interest. I have confidence that anything he learns during this adjustment period is more than he would have in school. I’m researching curriculum packages and plan to start using one at the end of summer.

I’m not under the illusion that it’s easy to acquire the skills of a trained educator, but I also don’t have to learn how to teach all kids – I only have to learn how to teach mine.

“Did something happen that made you take him out mid-year?”

Yes, but it wasn’t a one big thing. It was several small things.

First, I tried to show Cheeks’ IEP team what he can do when provided with the right academic tools. I brought them videos, books and news articles regarding his method of spelling to communicate. There was some interest in learning more, but not much. The district-based administrator on his team wouldn’t even take a copy of one of the articles I brought, much less read it.

I also offered a demonstration of how Cheeks spells; provided by Cheeks’ and his therapist, and done at our expense. I was flatly denied, and told that such demonstrations are considered training and therefore are not allowed. Privately, I offered his teacher to come see it unofficially and on our own time. That was months ago and the invitation has not yet been accepted.

The last straw came from a behavior therapist on the IEP team. I had often reminded the group to interact with Cheeks in an age appropriate manner, and presume his competence to understand. When we got to the part of our meeting where we would discuss how to reinforce his preferred behavior, one of the team members described a suggested example of what that might look like. She said in a sing-song voice, “Yay! You had quiet hands, buddy! Good job! High five!” Once again, I kindly reminded her that he is on the back half of 11 years old. Did she think maybe he knows her expectations of him are low when she speaks to him like that? She replied, “I talk to all the kids in his classroom that way.” The fact that I didn’t face palm right then and there is a testament to my self-control.

Regarding the middle of the school year, Cheeks’ educational programming is largely dependent on his IEP dates. Those occurred at least once annually, sometimes more often, but were not scheduled relative to a school year; rather, they were planned based on the elapsed time since the previous meeting. We had just finished his most recent IEP cycle when the decision was made. Being in the middle of the school year suggests that we take into consideration things such as grade-level curriculum, field trips, project-based learning, standardized testing, etc. When you have a student who is not included in these elements of a typical school year, then “mid year” becomes an arbitrary guideline to follow.

In short: it was because when you finally figure out what you’re supposed to do, you want that to start right away.

“Will he get socialization opportunities?”

This question presumes that Cheeks was getting socialization at school in the first place.

He was in a self-contained autism classroom with two other students, who were also nonspeaking. The playground where he spent his recess was the fenced-in one reserved for special education and kindergarten classes, not the one where the other fifth graders were. He had an assigned table in the cafeteria at lunchtime, which he shared with only his nonspeaking classmates and two adults. If there was an assembly, he sat in a chair at the back with his teacher, not on the floor with other students, in case he made noise or movements that could disrupt others. He usually sat alone on the bus to and from school, and no one has ever invited him to a birthday party or play date. He did have some times during a typical week when he was included along with other classes, but it wasn’t much and it was not social time. So I’m not too concerned about taking all that away.

At home, he’ll get facilitated activities, outings with other homeschoolers, or even just trips to the community pool. That’s already more than he got in school.

“I could never do that.” 

I think when people say this, it’s code for a mixture of respect for my choice and an underlying suspicion that I’ve lost my marbles. I used to think the same thing about homeschooling. I didn’t want to have to do this. I never aspired to it, or believed myself called to it. In fact, I fought it as hard as I could. But if, like me, you were also faced with no other good choices… you would figure it out, too. I’m glad you don’t have to.

That about covers what I have heard so far. If you’re thinking something and I’ve left it out, feel free to ask. I promise not to make it awkward.

 

Let’s See Who You REALLY Are…

I have recently started homeschooling Cheeks. The main reason for this is that the public school system refused to accommodate Cheeks’ spelling to communicate, because it is not yet an evidence-based academic methodology. This created numerous disparities in what they believed to true about his cognitive ability; and in turn, how they taught him.

We know that Cheeks is intellectually competent to be just what he is, 11 years old and learning at a 5th grade level. In school, he was being taught at approximately the 1st or 2nd grade level based primarily on his inability to speak or write correct answers. His most recent work samples sent home last month had him writing the words hot-pot-robot; answering reading comprehension questions from a three sentence paragraph; and doing two-digit addition and subtraction.

In our lessons at home, we are jumping in at a 5th grade level in most subjects. Core subjects such as history, science, and language arts can all be taught starting with any topic; and presenting the lesson at a 5th grade level of complexity. As it turns out, Cheeks loves to spell long, challenging words: his recent vocabulary in home lessons has included “hieroglyphics”, “archaeologist”, “xylem”, and “anesthesia”, among others. (Note: I was a state-level spelling champion in sixth grade, but spell check had to correct two of those words for me as I typed this post. He got them right on the first try.)

The exception in terms of the difficulty level I present to him is math, because the concepts build on one another as you progress through the subject. If you’ve never had 3rd grade math, you can’t really jump in at 5th grade. So for that area alone, I was preparing to teach at a more basic level. I spent the last three weeks researching methods to teach math facts in a fun way: one that would allow him to learn what he needs to know but did not teach it in a way that would talk down to a 5th grader, who in ordinary circumstances would have learned them much earlier. I bought and borrowed books, read lesson plans, and studied everything I could find.

Screen Shot 2017-05-20 at 2.27.07 PM
Me, planning to teach Cheeks’ his multiplication facts.

Two nights ago at bedtime, on a whim, I decided to ask Cheeks if he already knows his times tables. He answered yes. I was surprised, but his speech can often be unreliable, and he says things that are not what he means to say. So I didn’t know if his answer was intentional. The next morning I still had all my books and lessons ready to go, and we sat down to start learning multiplication.

I warmed up his motor skills by giving him some of his beloved long words: “multiplication,” “accelerated addition,” and “mathematical.” I switch to the number board and this followed:

Me:  What’s 4×4?
Cheeks:  (body language reflecting total confidence)  [points to 1, then 6 on the board]
Me: (thinks to self “What the…? Must have been an easy one for him.”)  OK, what’s 7×5?
Cheeks: [points to 3, then 5]
Me:  (???????)  What’s 9×9?!
Cheeks: (looks at me as if I have three heads)  [points to 8, then 1]
Me:  ~laughs like a giddy little girl~
Cheeks: Can I be all done now?
Me: (still giggling)  Yes buddy, you can be all done. You’ve earned the day off. I’m sorry I didn’t understand when you said you already knew all this.

Screen Shot 2017-05-20 at 2.25.02 PM
Me, after realizing I didn’t have to teach him.

It felt a little like that moment in the Scooby Doo cartoons when the characters say, “Let’s see who you REALLY are” before pulling off the ghost’s mask to find Old Man Jenkins up to a nefarious scheme.

I have never been so happy about the massive waste of my time all that lesson planning turned out to be. And I shouldn’t have been surprised by this. I am being reminded every day of how much he does know, and after all, he told me he knew this too. I just thought since it had never been expressly taught to him, how could he know it? There should be a name for how a person feels when they are both surprised but not surprised. Maybe I will ask Cheeks what that word is, he’s clearly more likely to know it than I am.

In the meantime, I caution those reading this to assume that he’s extra-smart in math simply because he’s autistic. Maybe he is, or maybe he’s not. That assumption is based on stereotypes that have actually inhibited our understanding of him until now, so let’s reject those. Better to presume his competence, provide his tools, and then get out of his way while he shows us who he is.

Come to think of it, that’s pretty much what all parents and teachers should do for their kids, autism or not. Imagine that.

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Why I Reject Autism “Awareness”

Each year, the month of April has been designated as National Autism Awareness Month, and the date of April 2nd is World Autism Awareness Day. These events have been brought into being by various autism support organizations, such as the Autism Society of America; and they aim to promote awareness, inclusion, and self-determination for autistic people.

I’m preparing now for my social media feeds to fill up with messages exclaiming support by wearing ribbons, installing blue light bulbs, and telling feel-good stories about instances where a neurotypical person or group found a way to include someone with autism in their world.

I appreciate the inteScreen Shot 2016-03-29 at 12.44.12 PMntion these people have when they declare their appreciation. I know they mean well. But each year I grow increasingly uncomfortable with the disconnect between these messages and the true understanding of what it means to have autism in one’s life, whether that is yourself or someone you love.

First, the whole “Light it Up Blue” campaign by Autism Speaks is a branding campaign aimed at serving that organization, and not a cooperative effort at true understanding. Autism Speaks has spent multimillions of dollars to identify the needs of the autism community such as the lack of inclusion, the financial impact, and safety issues. But they spend nothing on direct support to the community. The say offensive things about autism (For example, “These families are not living. Merely existing.” – Suzanne Wright, co-founder of Autism Speaks). I appreciate their legislative advocacy work and the role they play in funding research; they also have some good tools on their website for identifying resources and understanding the diagnosis. But many autistic individuals have trouble identifying with Autism Speaks’ mission because of their funding choices and their focus on neurological “deficits”, “cures”, and the “global health crisis” that is autism, suggesting a lack of acceptance on their part of the community of autism.  Out of respect to those with autism who feel that Autism Speaks does not speak for them, I choose not to “Light It Up Blue”.

Next, let’s discuss the feel-good stories. You know the ones… maybe the popular high school girl invites her autistic classmate to the prom (here’s one of those stories, and here’s another, and this one from a few years ago; and here’s one about homecoming, it’s evidently pretty trendy to do this). I also see stories about autistic teens being allowed to play in their first organized sport—usually the last game of the season, or the last few minutes of a game when the outcome is already clear—and to everyone’s surprise or as a result of their collusion, they score (read some of these stories here or here). These tales, while enjoyable to read, are also patronizing. They are only news because of the assumed inability for autistic individuals to access their world fully without neurotypical peers making exceptions to their usual choices.

Here’s the reality of autism. In the last year alone, my experiences parenting a child with autism have included the following:  Sitting on the floor in Target for almost an hour while Cheeks screamed, punched, and banged his head out of frustration and anxiety; and only one person in that time asked me if I needed help (it was not a staff member), although probably a dozen people entered the aisle and walked away in avoidance. Spending thousands of uninsured dollars on therapy, tutoring, and legal support to provide Cheeks with the same opportunities as his peer group. Studying special education law and individualized education plans for hours upon hours in order to provide Cheeks with the “Free Appropriate Public Education” (FAPE) guaranteed to him under Federal law, but which is not easily obtained without constant vigilance. And in recent weeks, I am investigating why Cheeks has not been invited to participate in field trips and other educational school activities offered to the rest of his grade level, which is leading to increasing isolation and self-containment in his school environment.

Awareness should have been established by now, so let’s agree that it’s not the right word for April at all. Acceptance and appreciation are the true goal. My wish for those goals is that we stop marginalizing our autistic students, peers, and community members. Stop seeing them as incapable or cognitively impaired. Realize that communication comes in many ways other than verbal, and seek to understand in those ways. Offer empathy rather than sympathy. Realize that their needs may be different from yours, but that a level playing field can be offered. Fair is not when everyone gets the same thing, but when everyone gets what they need.

If you agree with my goals, start by asking an autistic person or their caregiver something about their experiences so that you can begin your journey toward true undersScreen Shot 2016-03-29 at 12.11.40 PMtanding and appreciation. Ask me here, I’ll answer or I’ll ask Cheeks to answer. I promise you that autistic people and their allies are some of the most amazing individuals you will ever meet, because they face an intolerant world on a daily basis and usually keep their humor, hope, and joy of life anyway. A lot could be learned by most people from that, wouldn’t you agree? We welcome all of you into our community in the same way we want to be welcome anywhere. Come join us, we’ll leave the porch light on for you. But it won’t be blue.

Julia, the Autistic Muppet

Last week, Sesame Street announced that it is introducing a new Muppet-style character with autism. I love this for many reasons, one of which is because they are making her a girl (named Julia). That’s a deviation from what would be expected, since autism is five times more common in boys than in girls. Creating this character as a girl challenges what people think they know about autism, and about who they think may be autistic among people they meet.

Read the story here: http://autism.sesamestreet.org/storybook-we-are-amazing/
Read the story here: http://autism.sesamestreet.org/storybook-we-are-amazing/

I think many people, upon hearing the news, were under the impression that Julia would be seen on the popular PBS show we know and love. In fact, there are no current plans to put her on TV. She’s only featured in one digital story book, called “We’re Amazing, 1, 2, 3!” If you were under the impression that Elmo was getting a new autistic friend in any recurring way, that’s still unclear. Although I wish we could anticipate more visibility for Julia, she’s still part of a great library of online resources designed to celebrate amazing qualities in all children.

The most intriguing reaction to the news of Julia’s character that I found was an article in the New York Times, which suggests that unbeknownst to us, The Muppets already had an autistic character. If you know The Muppets at all, you definitely know this one. He can’t figure out what his audience will find funny, he often misunderstands metaphors, and even has a verbal tic (wokka wokka wokka). You guessed it… Fozzie Bear. Read the article, and more about the writer’s theory, here.

When I read this column, it made so much sense to me. I’ve known lots of autistic kids that interact with others in a similar way as Fozzie. But the best part of all is that no one ever thought to label Fozzie as autistic. As part of The Muppets, he’s just another lovable character among many, all of whom have their own oddities. Fozzie may fit the diagnostic criteria of autism, but he’s not an autism character, or any kind of stereotype. He’s comedic without being a caricature.

Autism acceptance is not simply passive tolerance. It’s not just about finding ways for kids with autism to learn, play and function alongside their peers. And it’s not just about teaching typically developing kids to understand their peers that have differences. At it’s best, and the goal, is to make it about allowing people with neurological diversity to be just people, and not be defined by what society deems to be a disability.

I celebrate this new character of Julia. But at the same time, I just crave more Fozzie.

Autistic, or Person with Autism?

quotescover-JPG-46I swear to you, this post is not going to be about political correctness. While no one should knowingly be rude to another, I prefer to believe that most of us have the best of intentions at heart in our communications.

On that note, I’d like to discuss whether people who have a diagnosis on the autism spectrum should be called an “autistic person” or a “person with autism”. Most disability advocacy organizations recommend that anyone with a disability should be referred to as a person first, and reference made to the disability second. That’s called “person first” language. There’s a growing contingent within the autism community however, that prefers to be called “autistic person”, or simply “autistic”. That’s called “identity first” language. And it has become a hot button issue for many.

As a writer, I know that even slightly changing the phrasing of words can subtly alter their connotation—even if the words’ literal interpretation means the same thing. And people with differences are so often marginalized in our society, that it’s important to me to refer to them in a way that makes them feel respected. Allow me to explain the difference between person-first language and identity-first language within the autism community:


The Case for Person-First Language

A disability is only part of who a person is, it is not the whole person. Mentioning the disability first is using the disability to define someone, and placing who they are as an individual in a secondary position. A disability is nothing more than a medical diagnosis. You wouldn’t say “cancer person” or “wheelchair person”, you would say “person with cancer”, or “person in a wheelchair”. Mentioning a developmental disability should be handled the same way.


The Case for Identity-First Language

Autism is not something you can separate from the person, it is at the center of who a person is. While there are aspects of it that might be considered disabling, it is not a disease nor a physical limitation. Personality traits are typically used as adjectives, such as calling someone a generous person. Autism may be only one personality trait, but it’s a fundamental one. For example, you wouldn’t say “person with Catholicism” or “person with Americanism”, you would say Catholic or American.


You may notice that both explanations make a persuasive case for using that particular methodology. Both want to emphasize the value and worth of the person. So which is the right one to use? Unfortunately, there’s no clear answer for that. Self-advocates (the appropriate term for people with autism who have reached the developmental ability to speak for themselves) are split, but I personally believe that the majority is in favor of using “autistic”.

For myself, I make a conscious effort to use the terms interchangeably. And when Cheeks is able to understand the difference, assuming he cares one way or the other, I will follow his lead and use whichever he prefers. If you know him, then you know that the best thing to call him is by his name (“Cheeks”, “Ball of Smiles”, and “sheer awesomesauce” are also acceptable terms). And I am hopefully raising him to believe as I do, which is that even if people get their words wrong, they are generally doing so with good intentions.

The Case for Unconventional Therapies

Cheeks' receiving traditional behavioral therapy in social skills and following directions.
Cheeks’ receiving traditional behavioral therapy in social skills and following directions.

There are lots of reasons why parents of autistic children might pursue unconventional therapies. One of them is because the concept of proof—or lack of proof—can be transient, things that are at one time believed to be proven can be disproven (bloodletting, anyone?). For the purposes of this post, I am using the term “unconventional” to mean treatments that are backed with less or inconsistent scientific evidence. Rather, they are supported by smaller studies, anecdotal evidence or personal accounts.

Unconventional treatments for autism range from the innocuous (such as a gluten-free, casein-free diets), to the illegal (such as stem cell treatments which must be delivered outside the United States). Some of the more extreme treatments I have learned about include:

  • Parasitic Worms. Introducing parasites into the intestine on a short-term basis to boost the immune system.
  • Bleach. Diluted bleach ingested orally or via an enema, multiple times a day, to eliminate bacteria, parasites, yeast, or heavy metals in the digestive tract.
  • Lupron. A testosterone-inhibiting drug. Based on the belief that testosterone magnifies the toxic effects of mercury in the bloodstream.

These are just a few examples, there are many more. In the abstract, this list probably seems pretty horrifying and unconscionable. I chose the items on this list specifically because they seem horrifying, most alternative treatments are not this scary. We have not tried these therapies on Cheeks, although we have tried things that are less invasive than those listed above. But would we ever try something more extreme?

Consider this: your child is diagnosed with a life-altering disorder. He or she spends their days in physical discomfort, filled with frustration, and without personal safety. He or she is unable to access things that typically bring joy, such as friendship and education. No one can tell you why this is, and no one can give you a clear treatment plan that will help. Every solution you pursue comes with little or no change, and even when you see progress, it comes in small steps that are painfully slow to arrive. It’s all enormously expensive, and even those treatment options that are mainstream are still not covered by insurance. Everyone in your family is affected on profound levels, whether financially, emotionally, or socially. At the same time, your peer group that is facing similar challenges tell stories of success with treatment plans that your doctor never offered you. You easily find supporting evidence of these stories, even though the studies may be small ones. Can you say with certainty that you wouldn’t act on this information?

quotescover-JPG-15We follow certain rules when choosing new therapies for Cheeks. One is that we must first be as sure as possible that they will not harm him, physically or emotionally. The other is that we only try new things one at a time, so that we can tell which interventions are working and which are not. Furthermore, I believe that any unconventional therapy is best served in conjunction with more thoroughly tested options.

I also don’t believe that every symptom of autism needs to be “fixed”. Cheeks is already perfect the way he is, I am reminded of that every single day. There is greatness inside of him, I know that for sure. I don’t want to alter that as part of shaping him into the kind of person the world expects him to be. I, like any other parent, only want him to be able to live a happy, healthy life.

But seeing your child sad, in pain, or hurting himself daily—these are the things that make parents desperate for help. Desperate people do desperate things. And sometimes, desperation is the motivation needed to make a difference.

Frequently Unasked Questions

Occasionally I get a question about Cheeks that is asked delicately, as if it needs to be approached with extreme care. I understand the impulse, but in my case it’s unnecessary to hesitate. It also occurs to me that questions are like pests. For each one I hear, there are likely many more that I don’t. For that reason, I’m going to use this space to publicly answer those sometimes-tentative questions. I’m calling it my Frequently Unasked Questions (I was tempted to use the acronym as is done with FAQs, but decided against it).

Today’s question: “What is Cheeks’ level of functioning?”

I think this question gets asked because people are seeking an easy way to summarize Cheeks in terms they can understand. However, as is the case with most labels, it doesn’t capture nuances. I usually answer by saying he’s moderately functioning. I do that because it’s like calling someone middle-class, it allows for a lot of unstated interpretation. It’s concise, but it doesn’t really answer anything.

The whole answer is, in some diagnostic criteria he measures on the low end, in others he measures on the high end. In order to answer the question fully I would have to break his individuality down into symptoms, which I won’t do.

A little background on the diagnostic criteria of autism: When Cheeks was diagnosed, it was under the terms of the DSM-IV. That’s a manual published by the American Psychiatric Association which classifies mental health disorders. That publication included a variety of named diagnoses within the autism spectrum, such as Asperger syndrome or PDD-NOS. It was superseded in May 2013 by the DSM-5, which is currently in use. The DSM-5 eliminated the varied labels in the spectrum, referring instead to anyone meeting the diagnostic criteria as simply having autism, and then separating by degrees of severity. That means there isn’t anything called Asperger’s anymore (although many within the community still prefer to identify with the word).

This is relevant information because historically, the term “Asperger’s” was used interchangeably with the term “high functioning autism” (HFA). HFA was never a diagnosis, it was a colloquial term that meant Asperger’s. The main difference between HFA/Asperger’s and other forms of autism was speech skills. It didn’t address any other symptom. Someone with Asperger’s could still have other, more severe symptoms than someone who was described as lower functioning on the spectrum.

quotescover-JPG-97There are several symptoms commonly seen with autism, but not all of them are present in every individual. They may include a lack of understanding of social cues and nonverbal communication, stereotypical behaviors (think obsessive and repetitive), speech impairment, hypo- or hyper-reactivity to sensory stimuli, inflexibility about routines or rules, etc. That’s not all of them, just some examples.

Cheeks does speak, but with significant impairment. He’s very empathetic, but social cues are hit-or-miss. He doesn’t really have repetitive behaviors, but he does develop focused obsessions. His self-injury and tantrums can be severe. He makes great eye contact and he’s affectionate. I could go on, but you see the disparity I’m demonstrating.

I also have to consider the message that labels like low and high functioning send. If I call Cheeks high functioning, I’m disregarding the very real and significant difficulties he has. And if I call him low functioning, I’m disregarding his current and constantly developing skills.

There’s no quick yet descriptive way to label anyone on the autism spectrum. In fact, there’s a growing resistance within the autism community about whether to use labeling terms at all. If you’d like to know more about that, you can read a good explanation here.

What I am most mindful of is that these are real, multi-faceted people, and we’re trying to use one term to describe all of their skills and deficits. That sounds like the results of a Facebook quiz, not a genuine and appreciative way to discuss a person. It’s better just to say to me, “tell me about Cheeks”. I promise not to spend hours on the answer, as much as I’d like to. And in return, I’d love to hear about someone you love, too.

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The Problem With Play Dates and Parties

downloadWhen my older son was Cheeks’ age, we had plenty of opportunities for him to socialize. That doesn’t happen for kids who have autism. A few months ago I came across a story titled, “The First Time My Son With Autism Got a Birthday Invite I Didn’t Have to Decline“, and I only got as far as the title without feeling that familiar kick in the gut over the ways my son doesn’t get included. By the end of it I was a puddle. Cheeks turns 10 in a few weeks, in those years he has only ever been invited to one birthday party. He’s never had one of his own. There are many heartbreaking stories that I have seen about other families having painful experiences when they have tried, so we’ve just had to take a nontraditional approach to throwing parties.

Until a few days ago, Cheeks had also only ever had one play date. That was with a neighbor’s son, who was asked to come to the house under the supervision of Cheeks’ behavioral therapist, to assist him in learning how to play with new friends. Since it was technically a therapy session for Cheeks, I’m not even sure it counts as a play date.

Cheeks and Music Man, hanging out together. Or rather, alongside one another.
Cheeks and Music Man, hanging out together. Or rather, alongside one another.

A few days ago, we tried the play date thing again. This time, with a boy—whom I will call Music Man—from Cheeks’ classroom. Cheeks was so excited, it’s all he talked about from the moment he got off the school bus until we were ringing the doorbell at Music Man’s house. That’s a Very Big Deal, because talking can be such a chore for him. Music Man’s mother and I were hopeful about it going well, but I think we were both a little anxious as well. On the one hand, I was afraid Cheeks would be triggered in this unfamiliar environment and have one of his epic tantrums, complete with the usual self-injury. On the other hand, if there were any safe place for that to happen, it would be at the home of another special needs family.

The play date was kept short, and both boys seemed contented enough. They tried to do a few things together, but they were struggling with the new experience and not knowing what the expectations were. These humble results were deemed a success by both myself and Music Man’s mom.

It took about ten shots to get both of them almost smiling. I love this picture a whole lot.
It took about ten shots to get both of them almost smiling. I love this picture a whole lot.

If they could tell us, I believe that both Cheeks and Music Man would explain that they want to connect, but they don’t know how to do that. They want to be welcomed by other kids, but they don’t know how to behave when it’s offered. They want to play with their new friends, but they get easily confused by social rules and manners. They want to enjoy the time they spend with others, but anxiety is a part of everything they do. Most of all, they are constantly looking for people and places where these challenges don’t stop them from finding friendship.

If you are lucky enough to have a child with a social life, be grateful. Having friends is one of the great joys of life. And maybe ask your child to invite someone over who sits alone, acts funny, or doesn’t always seem like he or she is listening. That small act might just be the first time another child gets included.

Presume Competence

One of the most common questions I get about Cheeks is “does he understand____?”, and the answer is that I don’t know for sure. In theory he can talk and explain for himself, but in practice, speech is so difficult for him that he has learned to not depend on being understood. Therefore he often remains quiet when people interact with him. But we live in a highly verbal world, especially within the education system. As such, the measurement tools that are used to identify learning are flawed. Of course, that happens with neurotypical kids, too. So… what does he understand?

I attended an educational session this summer in which a newly minted Ph.D. presented the dissertation paper that earned her the degree. Part of her research depended on demonstrating to neurotypical kids how a child can be a competent learner and yet still be unable to comply with the way a test is presented. To do this, she administered an Australian intelligence test to her American students. (I have no idea if this test is authentic, but it demonstrates the point.)

Einstein
It’s likely that Einstein never said this. But the words are relevant anyway.

Why couldn’t they pass the test? It was presented in their native language and they were given whatever accommodations they needed in order to complete it. Because it was created with a particular audience in mind, and they were not that target audience. The same is true of tests created for a verbally-based educational system when given to non-verbal or semi-verbal students.

When Cheeks’ had his most recent intelligence testing done, he tested as having an IQ of around 70. That score is two standard deviations from the mean, which in layperson’s terms used to mean labels like moron, feeble-minded, or retarded. I am not making this up. The standard disclaimer language that I was presented when told of Cheeks’ score included the warning that his score was unlikely to change much in his lifetime. So that was fun.

But I do not believe it. I know there is a whole world locked in there, waiting to be released. I believe in his abilities not just because I’m his mother, but because I see evidence of it every single day. Have you ever had that dream where you are calling to someone who should be able to hear you, but for whatever reason they can’t? I think that is likely the world Cheeks lives within.

Every day, we are chasing down ways to allow him to be heard. Until then I will speak to him as the 9 year old he is, and presume until proven otherwise that he has the ability to understand. There is nothing wrong with his hearing, and I would be crushed to learn later in his life that he didn’t know why we were always talking down to him.

I understand why people talk to Cheeks as if he is a much younger child. And I appreciate their desire to connect with him. But please, don’t interpret his lack of appropriate responses to mean a corresponding lack of understanding.