A bit ago, I posted a link to a discussion started by Brenda (@mamabegood) and Elise (@RaisingASDKids). I thought the discussion presented some interesting, divergent and meaningful points of view on what creating an equal opportunity for our children on the spectrum means. When I posted the link, my first reaction was that my perception of equal opportunity for my daughter fell somewhere between Elise and Brenda’s perceptions, and while I wanted to share their discussion with others right away, I also wanted to process their thoughts and others’ comments before posting my own.
I’m glad I did for several reasons, but mostly because some folks came out of nowhere with some pretty nasty comments, mostly to Elise. So, I want to start with a disclaimer: You don’t have to agree with me. You don’t have to agree with Brenda or Elise. You don’t have to agree with anyone else who comments on this or another blog. But, you should contribute to this discussion only if you can respect differences of opinion. There are many, many things we can debate about raising spectrum kids, but I hope we all agree that raising a spectrum child is challenging enough by itself. If children on the spectrum and their parents are all challenged by the lack of awareness in society at large about ASD, why would we add to that by community in-fighting? We all ultimately want the same thing: the best life can offer our children. So, attacking each other on this topic (or any other) is counterproductive to that goal. It’s only by creating an environment where we can each share our perspectives without fear of reprisal that we can have a discussion with diverse enough ideas we might find some solutions. There doesn’t have to be consensus; there just needs to be dialogue.
Here’s the bottom line: If you call me an idiot or evil or stupid, I am not listening anymore to what you say next, no matter how valid your point, and I am deleting your post. You will not bring me around to your point of view by verbally beating me (or anyone else) into submission, so take that nonsense somewhere else. No one’s child came with a user’s manual, and we’re all doing the best we can and learning as we go. Mistakes will happen, because none of us is perfect. If you think I made one, say it. But say it nice.
Now, with that long-winded disclaimer …
My ultimate goal for my daughter is that she live as independent an adult life as she can. The road that gets us from today to that day is not mapped for us. Right now, my daughter is in an autism-specific classroom. That seems to work for her in many ways; in other ways, it is not optimal. But, so long as we make forward progress, we will keep on, knowing that there will be forks in the road sooner or later. One fork sure to come is deciding between special education classroom and mainstream classroom. Right now, I see more disadvantages to a mainstream classroom than advantages. So, if forced to make that choice today, we would opt for a special education environment, even if that meant private schooling or homeschooling. But, we don’t have to make that decision today, and the landscape may change dramatically between now and then. That means that the only thing I am certain of now is that the decision is highly individualized and based not only on the needs of the child but the means of the family making it.
For me, though, the decisions about the environment in which my daughter’s education takes place are different from (although related to) decisions about what that education should teach. What I found so intriguing about the discussion that Brenda and Elise started, and which (some of) the comments on their respective blogs furthered, is the underlying idea that what a child learns is a product of the environment in which she learns it. Where I come out on this is here: I think how well a child learns is a product of the child’s learning environment, that it is entirely possible for a spectrum child to learn everything she needs to know to succeed in the broader world without ever setting foot in a mainstream classroom, and that whether education is delivered via mainstream classroom, autism-specific school or your dining room table, the learning is going to have to include some measure of behavioral learning that is indispensable to functioning in the broader world.
Brenda’s observation near the end of her blog resonated with me: Autism cannot be “behaved” away. Autism is a neurodevelopmental disorder with roots in some unknown combination of genetic mutations and environmental factors. No matter how well a person on the spectrum learns to control or redirect his or her behaviors, that person is not cured; she remains on the spectrum.
Where Brenda and I part company to some degree I think lies in the difference between diagnosis and treatment. Autism manifests itself in behavioral ways, so treatment focuses on addressing behaviors that interfere with or preclude daily functioning and that affect social interactions. I absolutely agree and believe that no treatment should ever, ever involve shaming a child — NT or otherwise — into changing behavior. But, I’m not sure that I can agree with an argument premised on the idea that helping a child on the spectrum learn to change or redirect behaviors to better integrate or function in an environment (NT or otherwise) is to simultaneously teach the spectrum child that she is “less than” others not on the spectrum. For example, my daughter stims by running back and forth across a room on her tip toes (which she’s doing now, as I write this). When she’s doing this, she isn’t focused on whatever else needs to happen at that time, whether it’s handwriting practice, brushing teeth, eating dinner or reading a story. If she is taught not to stop stimming but to stim in a way that is less distracting for her and those around her, I don’t feel as though that’s shaming her or teaching her she’s less than her peers. That kind of behavior modification acknowledges the need for the behavior but enables her to direct in a way that improves her own environment and maximizes her chance of successfully completing tasks she must learn to self-complete to reach independence at some point in her life.
None of that is to say, however, that leveling the playing field or creating an equal opportunity to learn for my daughter or any other child on the spectrum inexorably leads to a mainstream classroom. Believe me, her stimming is just as distracting to her Autistic peers as it would be to a room full of NT children. But, her autism-specific classroom teachers and staff are far better equipped to respond to stimming and other Autism-specific behaviors. There are nine children in my daughter’s class and four adults. The whole curriculum is geared toward and built around how children with Autism learn. The kindergarten teacher down the hall, as lovely and good as she may be, is not well equipped to deal with my daughter stimming up and down the rows of desks or the fact that she’s not yet toilet-trained while contending with 29 other kids. So, my daughter is learning a lot more in her current environment than a traditional classroom would allow. It is, however, an imperfect solution. My daughter is particularly sensitive to crying. If a fellow student in her class has a meltdown, my daughter is intensely distracted by it, and often becomes upset herself. Her teachers are working with her to redirect her attention, but I wonder if they are asking too much. Anyone who’s been on an airplane with a crying toddler can attest to how hard it is to tune that out. Yet, just as we must learn to “deal” with crying babies at 35,000 feet if we want to fly, my daughter and others like her are going to have to learn to deal with that kind of distraction (or annoyance), too.
This brings me to where Elise’s comments resonate with me. Everyone of us has a gift – a talent or ability – upon which we can capitalize in a personal or professional way. (Both, if we’re lucky.) I’m good with words, but not with numbers. So, I chose a path for myself that allowed me to emphasize my strength and minimize my limitation. My son is musically inclined and very math-brained, but writing frustrates him. (Making homework so much fun …) It makes sense to me that his future path will lead him toward a career or personal activities that allow him to pursue what he does well and avoid what he does not. For me, “equal opportunity” or a “level playing field” for my daughter is nothing more or less than the ability to find and pursue her talents and minimize her limitations. I never expected the world to accommodate my inability to understand math, and I don’t think it’s wrong that anyone expected me to try to understand it. I don’t think anyone should accommodate my son’s intolerance of or disinterest in writing essays, and I have problem leaning on him to accept that’s part of the deal when he goes to school. By the same token, I can’t expect the world to allow my daughter to become something she has neither the skills for nor interest in becoming. What I can do — what I do — is make sure she has the opportunity to try — to explore as many things as possible so that she can find what she loves and what she’s capable of doing. And, if creating opportunities for her to try something means helping (and, if appropriate, pushing) her to adapt to the environment she wants to explore, then that’s what we will do. Conversely, if there is a reasonable way to adapt the environment to her, we’ll do that, too.
But, I do mean changing the environment and not the basic skills required for what needs doing. For example, to work as a UPS driver, you must be able to bend and lift up to 70 pounds. If you cannot do this, you either need to improve your physical condition or find different work. It is not reasonable to ask UPS to change the entire way it runs its operations so that a person who cannot perform these essential skills can work as a UPS driver. There is a serious, important and legitimate difference between setting expectations and putting up obstacles. A level playing field is not one free of expectations; it is one free of obstacles for the player.
In our quest to honor diversity — which is an important undertaking — sometimes we become less tolerant of it. When we say that we are all created “equal,” we are acknowledging that we are all – as human beings – entitled to the same basic rights. It is not an edict that we all be allowed to do or be capable of doing the same things. Would Adele be as remarkable if everyone had her sultry, smoky voice? Would Nolan Ryan have been as remarkable had everyone his pitching arm? Would Marlee Matlin be as remarkable if every deaf woman could act as well as she? Would James Durbin be as remarkable a member of the ASD community were he not so gifted a vocalist? Conceptually, we don’t seem to have a problem understanding and even glorifying diversity of talent. But, the same logic that applies to diversity of talent — which is certainly a spectrum — can apply to diversity of ASD (or nearly anything else). In the comments on Brenda’s blog, Maureen Mitchell wrote that people on the spectrum are like “snowflakes.” True — very true — but that analogy applies to us all as human beings. Equal opportunities and level playing fields are not about making all the snowflakes look alike. They are about letting the flakes make up the snow, wherever it may fall.