The False Dichotomy – “High” and “Mid-to-Low” Functioning

I get to be reminded of this quite often. This false dichotomy between those with “high functioning autism” and those with “mid to low functioning autism.” Why? Because Daniel, to those who split things down those lines, is considered “mid to low functioning,” and to those who split things down those lines consider Stephen to be “high functioning.” I’ve been accused of having nothing but “high functioning” kids because of my expectations and the way I frame their skill sets.

But when you meet them, you can see the types of supports my children need. I don’t even go through a lot of those supports here because I respect them enough to not be so cruel and share their most intimate struggles with the world. (Yes, I know I share a lot more than other parents do, but it’s far less than I could. I try to find my balance.)

But here’s the problem. Today, I got to see this false dichotomy again.

We moved back to Texas. We have started at a new school. And to completely understand how the dichotomy is created, you need not look further than what is occurring right now to us.

You see, on Friday, I have two IEP meetings to go to. For one meeting, (Stephen’s) I will be going in alone. I feel safe and secure doing this. In fact, I have already been able to talk to the case manager about the few changes I’d like to make to the draft IEP and she has agreed with those changes. For the other meeting, (Daniel’s) I’m already forced to bring an advocate with me. This is our first official IEP meeting before our stay-put is up. I do not feel safe going into a meeting alone.

What’s sad is that over the years, we’ve had to do this over and over and over again for Daniel’s IEP meetings. We’ve had to bring advocates and attorneys. We’ve had to fight for his rights as a student to a “FAPE in the LRE.” For Stephen, we haven’t had to. And usually the difference between the initial team with Stephen and Daniel are 2 people. The Special Educator and the General Educator. Even then, when you take the same SpEd and they go from Daniel to Stephen or Stephen to Daniel, we still have the problems. So it can’t even be said to be a problem with any individual SpEd.

The difference was and is and will be Daniel and Stephen. Not surprising since they aren’t the same people that they have different support needs. I am not comparing and contrasting them. I stopped that long ago. But it’s clear that people’s opinions of Daniel are completely different than their opinion of Stephen. Their expectations of Daniel are completely different than their opinion of Stephen. Yes, I know, they are different children and they have different support needs. This says to me they need different approaches. But that does not mean that the expectations should change.

Yet, time and again, the expectations are what’s different. This is about presumption of competence, partially. But it’s also about what people see as “workable” and “fixable.” The occasional outburst is “workable” and “fixable.” But the frequent outburst, possible daily outburst, is maybe “fixable” but it’s definitely not “workable.”

The fact that one of my children lets things explode, while the other keeps it in. The fact that one looks “normal” while the other doesn’t. One sounds “normal” while the other doesn’t. At some point, people give up on trying to “fix.” And at that point, they find excuses to allow the child to undergo their easy alternatives. Sometimes it comes in the form of restraint.. or seclusion.. or removing from the “normal” kids. But never does it respect that child and their needs.

And so the dichotomy is born. It comes from the attitude that kids must be fixed to look normal. But it’s also about what each school employee is willing to work with. And what their expectations are for their ability to work with that child. And if they don’t expect to be able to fix that child, then that child is hidden away. Sometimes it’s in small doses, but often times they’re hidden away all day.

They learn none of the skills they need to be productive. They are never given the chance to enhance their already strong skills. So those skills are wasted. And slowly the divide gets wider and wider. Not because the “mid to low functioning” child is not capable, but because their lives are sacrificed. Meanwhile the “high functioning” child, workable, they get to increase their skills. They get to gain new ones. All because people had expectations for them.

And it’s never been more apparent to me than it is today. As I go into Friday with eagerness and fear.

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