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  • Posted on October 21, 2013 at 10:00 AM

I’m testing a theory. The school psychologist who observed Alex speculated that Alex’s pinching is about predictability and attention-seeking. The team discussed how pinching may be avoided by withdrawing attention from Alex, which was sparked in part by something I talked about doing.

You see, Alex has a tendency to pinch me when I’m occupied doing something else. That happens a lot, by the way. When it happens, I tell him, “No pinching.” And I keep doing what I was doing. Then, I give him attention when I’m done.

So, I tried to make these efforts more immediate and purposeful. When Alex tries to pinch me (or anything else) I look away from him, say, “Stop,” and disengage. He stops. Then, I give him the attention he wants before I go back to whatever I’m doing.

It’s working, for the most part. Now, he sometimes goes to pinch or something and stops himself. When he does that, I give him the attention he wants right away. Other times he pinches anyway, especially when I just get home. It’s an on-going experiment. So, we’ll see how we both do at it and whether or not it’s time to get other family members in on the action.

Meeting Results

  • Posted on October 16, 2013 at 8:00 PM

The meeting was a success! There, I saved you some suspense. Now, let’s take a look at what made the meeting a success.

Unlike a typical IEP meeting, we didn’t spend a lot of time going over what we knew. We met, conversed cordially until everyone got there, and then dug right into the new data. The school psychologist was the one to collect the new data. I worked with a different psychologist with Willy, but this was someone new, someone not familiar with Alex and his interactions.

The pinching that she observed was consistent with the normal behaviors we’d seen before. In other words, Alex didn’t attack anyone, which is what he’d done to start this process. So, for the first part of the meeting we concentrated on strategies to address these typical behaviors with the hope of extinguishing them.

In other words, we followed the data we had and came up with solutions using that data to:

  1. Determine the additional data we needed.
  2. Use what we currently knew to re-address our strategies.

After listening to the input from a variety of the specialists present at the meeting, a new approach became clear in my mind:

  • We know that Alex engages in pinching at times of apparent disorder.
  • We know that Alex tends to target certain individuals and we speculate that this targeting is due to the specific, predictable responses he receives.
  • We also know that Alex needs copious amounts of positive sensory stimulation to stay regulated and that Alex responds negatively to normal classroom sensory stimulation (different sensory stimuli in each case).
  • We know that Alex now receives positive sensory stimulation in response to pinching and we speculate that this has reinforced the pinching behavior.

From this, we concluded that Alex craves more predictability than he is currently being provided with and that we could provide this predictability by increasing the structure in his school day. We also recognized that Alex’s attention span doesn’t last a full hour, so the structure we add needs to be a shorter cycle than the typical way the school segments time. We also wanted to provide Alex with more consistency, sufficient positive sensory stimulation, modeling of appropriate behaviors, and opportunities to improve his communication skills.

A two-fold approach resulted from these conclusions:

  1. We would create a repeating cycle of predictable events that Alex can rely on. The cycle will be flexible, both progressively and functionally. This means that the same cycle will be used throughout the day, regardless of what the academic or therapeutic expectations are. It also means that the cycle will expand and contract according to Alex’s needs. For example, he’ll have shorter periods of sensory stimulation and longer periods of academic work as needed.
  2. Staff schedules will be managed to provide Alex with consistent adult support, so that the same people will be made available to Alex from day to day.

These two approaches answered the question, “How are we going to provide what Alex needs while we shape the behaviors we want to see.”

These conclusions updated the behavioral intervention plan that we had been using to better meet Alex’s current needs. There was a celebratory atmosphere for a moment. We were confident and enthusiastic about our new solutions. But it seemed premature to me. We still needed a third component to break the current pattern, and we needed it to be something that could address the more extreme situations, should they reoccur, like the one that made this meeting so urgent.

The vice principal had been silent throughout the meeting. He was there as an authority of the school’s and he hadn’t contributed yet. It was at this moment, when we had determined two of the three components I felt were necessary, that he spoke up to remind everyone why we were here. His voice was like a dash of cold water on the team.

I wish I could quote him, because he spoke very well. He approved of our strategies, but reminded us that Alex lived in a larger environment that included people who would not be as understanding or appreciative of Alex’s unique needs. After the severity of the last incident and previous relatively minor incidents where Alex sought out strangers to pinch, his concern was that there could be potential blow-back and that the school had to demonstrate a level of responsiveness to this aggressive behavior that had not yet been addressed.

In short, he was the authority person reminding us of the big picture. At the same time, he asserted himself as a member of the team, as well, by reinforcing that he, personally, was sympathetic and appreciative of Alex. He also said something that suggested he is also the parent of a child with autism. The cumulative result was that, while he was supportive of the work we’d just done, he has a responsibility to ensure the safety and welfare of those Alex might hurt.

I respected his approach. He handled the situation well and successfully got us on a track that made it possible to address the serious concern that brought us to this meeting, even though we didn’t have any new data to use. Everyone seemed somewhat at a loss on how to go from here. Alex doesn’t really respond to traditional disciplinary action. Nobody really wanted the consequence to be Alex being sent home, both because it’s ineffective as a consequence (more of a reward than a punishment) and because it deprives Alex of school time for something he really doesn’t (to our knowledge) understand.

It was a difficult situation. It took me a while to express what I was thinking. As parents, we’d tried so many different discipline techniques and nothing had worked. Well, almost nothing. The one thing that had worked wasn’t something we really used on a regular basis. I tried it awhile back. It wasn’t planned. It was simply necessary. Occasionally, I would use it again when the situation warranted. Attacking someone for no apparent reason we could recognize seemed to warrant it.

Alex likes cars, especially when they are moving. When he was younger, he would walk out into the street to take a closer look if we didn’t catch him first. One time, I got to him just short of the street, took him back to the porch, and sat him down on our steps. With “hard hands,” I put his arms down and made him sit, watching the cars from the safety of the porch. It wasn’t so much a form of restraint as it was firm, authoritative physical contact. When he tried to get up, I said, “No. Stop. Danger.” Short, simple words that I knew he could understand. My face was stern. My voice was firm. It was the closest thing to discipline that ever worked with Alex. And I described it to them in as much detail as I could.

Together, we discussed ways to implement this technique in the classroom. What it would look like (like a time-out within the environment), what Alex’s response would be (yes, he would get angry), and what the result would be (Alex would calm down and would recognize that he had been stopped). We spent time discussing how it would work and recognized that it could be implemented right away.

We had the third and final component. That, along with increased data collection, will prepare us to meet again at the end of this month for his IEP. We’ll see how these strategies are working and we will fine-tune them with the new data we’re collecting. We’re optimistic.

A Scientific Link

  • Posted on October 11, 2013 at 10:00 AM

I’ve listened to many parents and many people with autism describe their experiences. I’ve listened to them describe how and when symptoms first appear. I’ve listened to them ruminate on experiences prior to the recognition of autism, noting that autism symptoms began much earlier in some cases, but not in all. I also recognized that “autism” is a label based on behavioral—i.e. psychological—observations, but evidence indicates that autism is most likely neurological in nature. I deduced that what we call “autism” is probably many different things, with different causes, different treatments, different prognoses, and different complications.

It seems I was right:

People with autism are ?regularly lumped together and treated as a single group. But the world’s largest genetic study of the condition “shows that autism is many different diseases,” says Stanley Nelson, a professor of genetics and psychiatry at UCLA who collaborated on the investigation. “That insight should greatly enlighten how we think about autism and attempt to treat it.”

As the researchers reported last July, the mutations associated with autism fall all over the map. “If 100 different kids with autism walked into a clinic,” Nelson says, “chances are they’d have 100 different genetic aberrations.”

If this doesn’t change how autism research is conducted, then perhaps this will:

  • Dr. Carla Shatz studies neuroplasticity.
  • She discovered that MHC1 is an important protein in brain plasticity.
  • This discovery was made, in part, because she didn’t “know” that MHC1 couldn’t possibly exist in the brain.
  • You see, MHC1 is typically part of our immune response. Immune responses don’t pass beyond the blood-brain barrier in healthy brains.
  • In the brain, MHC1 serves a different purpose, pruning cells as part of neuroplasticity.
  • Imprecise pruning may be a key factor leading to what we call autism.

Research also indicates a connection between immune disorders and autism, and this may be the key to that connection. This might also explain the connection between autism and schizophrenia, both of which seem to involve imprecise pruning of synapses. Dr. Shatz research may lead to the ability to exert external control on how synapses are pruned, which could help people with a range of neurological challenges, from Parkinson’s to Alzheimer’s, from autism to schizophrenia, from stroke to brain injuries.

This still leaves us with the question: How much of this should we try to do? Just because we can, doesn’t mean we should. More on this next week.

While I was napping…

  • Posted on October 2, 2013 at 10:00 AM

During my last post, I talked about my sleeping challenges. On Thursday, it became a problem, but only because a much bigger problem occurred while I was napping. You see, I stayed up until the wee hours of Thursday morning, slept for a while, got up, got the boys off to school, and then went back to bed to catch a quick nap before I started in on my work for the day.

While I was napping, Ben’s teacher and/or aide tried to take him to the bathroom. I don’t know what he was doing before they left or how they transitioned him, but it didn’t work. He threw a fit on the stairs. He ran into another room. He ran outside. He ran back into another room. He ended taking off all his clothes and his diaper. They couldn’t get him back into his clothes. Eventually, he urinated on the floor. He definitely walked through his urine. Someone claimed he rolled around in it, too.

I’m not sure when the calls started: when they couldn’t get him dressed or after he’d urinated on the floor. But they called the house once. They called my work number once. They might have called the cell, but it was turned to silent and I don’t have voicemail set up. Mark and I were both sleeping and we continued to sleep through these calls. Then, they called my mother at work.

By then, Ben had urinated on the floor. He still wasn’t dressed. She specifically told them to leave him as he was. By the time she got there, Ben was dressed and happy to be escorted out to meet her.

First Down

  • Posted on September 23, 2013 at 10:00 AM

It’s always a guess who’s going to get sick first and how soon it will happen and how quickly it will spread. Alex was our first one down and it was a lingerer. He was sent home last Tuesday because he’d thrown up in school. Our Autism Waiver case manager was coming that day and she was just as skeptical as my husband and I about the legitimacy of this illness until I showed up with Alex. He was obviously lethargic and had been since before he threw up.

He only threw up that once, but for the next few days he was slow to eat, even slower to drink, and very warm, though not dangerously so. He was fighting it off, but it took all week for him to really get his energy back.

Alex is going back to school today. I slept more to keep from being knocked down with it. It took away from my productivity during a busier-than-usual week, but it had to be done. Mark got away with a “tickle” in his throat for a day. Ben was down for a while, missed a day of school, but rebounded before the day was half over. Willy was “doing great” all the while.

It’s always a little heartbreaking to see how fragile Alex’s immune system can be. It’s awful that the most difficult one of us to help is the one who bears the brunt of whatever’s going around.

Where Legislation Ends…Social Advocacy Begins

  • Posted on September 6, 2013 at 10:00 AM

I was chatting with one of my online friends (she’s in Australia) about why neither of us identify with the feminist movement, despite being personally empowered as women.

Being older than me, she grew into the person she is in a different time than I did. Being Australian, she also grew into the person she is in a different place. Therefore, she had different reasons.

My friend explained that she just never got how you can legislate an attitude. What good could their efforts do if they were focused on changing the laws?

I explained that legislation doesn’t change attitudes, but it can change behaviors. In comparison, I said that if there were not employment laws protecting the interests of employees with disabilities, then we would have even fewer people with disabilities employed. We knew this, because when we didn’t have those laws, few people with disabilities could obtain employment.

I also explained that where legislation ends, awareness and advocacy begins. In the case of feminism, when I was growing up the most prominent feminists seemed adamantly anti-male. And I couldn’t align myself with that.

There are factions within the neurodiversity movement that make the same mistake. Because they’ve been belittled and made fun of, they in turn belittle and make fun of others. Perhaps they think that if they portray “normal” as flawed, then people will be more able to see the value of being different. Perhaps they honestly believe they are superior to others.

Either way, it amounts to building oneself up at the expense of others. If this doesn’t sound familiar, it should. That’s what bullies do.

Social advocacy and social change can certainly be built using bullying tactics. Feminists have succeeded in introducing a belief in the inferiority of males into our culture. But those tactics and those beliefs don’t solve problems and they don’t create functional communities. They entrench opposite sides in conflicting beliefs, reinforcing negative stereotypes of both genders.

The irony, of course, comes with the definition of feminism that prompted my response to my friend. My friend was discussing feminism on a discussion board (I was just looking, not lurking), and a feminist defined feminism as believing in the equality of the sexes.

That may be what feminism should be, just like neurodiversity should be believing in the equality of neurological differences; but that’s not how feminism and neurodiversity are being practiced in reality. Check that. There are people who do practice that, but there are also prominent segments in both groups that practice supremacy of their disadvantaged type instead of equality of all types.

As long as self-advocates rely on bullying to achieve their goals, they will ensure there is a battle to be fought. You cannot bully others into changing their attitudes in positive ways.

Sexual Tension

  • Posted on August 19, 2013 at 10:00 AM

It’s perfectly natural for us to want to protect our children from sexual misconduct—whether our children are kids or adults. We don’t want our children to be victims of someone else’s sexual misconduct, and we certainly don’t want our children to be perpetrators of sexual misconduct.

When our children have developmental delays, it can be easy to see our children as perpetual kids. And kids, we’d like to think, aren’t sexual beings. Therefore, in our minds, our children aren’t sexual beings.

We like to think this because it’s easier than dealing with uncomfortable realities, like our children’s sexuality.

After all, sexuality is difficult enough to deal with when you’re a typically-developing adult. And the sexuality of our children is difficult enough to deal with when you’re the parent of a typically-developing teenager. Add in an individual with developmental delays and a continued fascination with child-like interests, and it can be very difficult to even acknowledge our children are also sexual beings, let alone talk to them about it.

But this willful ignorance comes at a cost.

Most people with developmental disabilities, like most people without developmental disabilities, express their sexuality in more or less acceptable ways, all things being equal. A few people with developmental disabilities, like the few people without developmental disabilities, engage in sexual deviance that is predatory in nature. Contrary to recent hype, neither quality has anything at all to do with whether or not someone is developmentally delayed.

But people with developmental delays are at a disadvantage, because all things aren’t equal. Society—including many of the people who exert control over the lives of people with developmental disabilities—have actively repressed their sexuality for decades. And we’re still doing it!

My mom used to work at a group home for people with developmental disabilities. They were housed in homes called CBRFs, which was basically a bridge between “normal” living and institutionalization. Some of the people she came to know had been forcibly sterilized. Others engaged in uncontrolled masturbation.

One of the group homes she didn’t work at specialized in housing sexual predators. These were people with uncontrollable sexual impulses who were “allowed” to prey on each other, because at least then they weren’t preying on those who didn’t share their compulsions.

So, the question is this: Are these people natural, normal predators? Are they so profoundly broken that they couldn’t possibly control their sexual impulses? Or is our denial of their innate sexuality part of the problem?

Sexual mores are learned. They are taught by society and the people in society. They change over time. Once upon a time, having an affair with a married man would make you a social outcast. Now, casual sex is tolerated, even encouraged. At least, for typically-developing individuals.

Granted, our sexual history is more complex than that, but when you compare sexual practices across cultures and over time it becomes apparent that sexual mores are learned. And this means that if we want people with developmental disabilities to know them, then we have to teach them. If we want people with developmental disabilities to abide by them, then we have to acknowledge that they do have sexual impulses. We have to give them safe, responsible ways to express their sexuality—which may or may not include abstinence—based on shared mores. In short, we have to educate them and then give them opportunities to choose for themselves, which is the same thing we should do for everyone else!

Burying our heads in the proverbial sand because we find it discomfiting is not a solution. It simply creates more problems and denies the people we love and care about one of their basic human rights—to be masters of their own bodies and to make informed choices about their own sexuality.

What We Want

  • Posted on August 16, 2013 at 10:00 AM

If you’re even marginally involved in the greater autism community, then you probably know that our community is as polarized as American politics. We tend to get so caught up in the how that we fail to see that, when it comes right down to it, most of us want the same things.

We want people with autism—both as children and as adults—to be able to live happy, healthy, fulfilling lives.

If you recognize this similarity, if you agree that this is the real goal of everything you do, then why not reach across the aisle and cooperate with others who want the same thing?

We can work together. We can achieve our common goals. We can find ways to compromise so that we can share a vision of the reality we seek.

We can, because we have to. If we don’t, we’ll fail.

It’s as simple as that.

The Employment Conundrum

  • Posted on June 12, 2013 at 10:00 AM

If you’re paying attention to the world of employment, then you might think the tide against homogenous thinking is turning. Maybe it is.

“The multinationals [SAP & Freddie Mac] both say they hope to harness the unique talents of autistic people as well as giving people previously marginalized in the workforce a chance to flourish in a job.” -- Fox News

For those of us who have people with autism in our lives, this may be seen as an opportunity. If you’re an adult with autism, there are people out there who value your unique qualities as employable assets. If you’re the parent of a child with autism, your child might have an employable future. This should be seen as good news, right?

I’ve read a variety of articles that communicate a changing trend. I’ve seen universities, employers, and other organizations all expressing their perception of the value of people with autism. As a neurodiversity advocate, this seems very much like what I’ve been working for, hoping for, fighting for. But then I remember that what I really want is a chance for my children, and everyone like them, to be valued for who they are.

You see, there’s a problem with all of this. I feel it like a shadow creeping up behind me. I feel it like slimy fingers along my spine. I feel it like the brush of coarse fabric against my skin.

Is valuing someone because they are autistic any better than NOT valuing someone because they’re autistic? Either way, it’s judging someone’s value based on a preconceived notion of who that person is and what they can or should be able to do. In other words, it’s prejudice.

I get the same creepy crawly feeling when I hear affirmative action expressed as a good thing. I’m sorry, but how is judging someone favorably for their race any less an act of racial prejudice, especially when it means judging someone else unfavorably for their race?

On the one hand, if we do nothing, then people with autism will still be marginalized. On the other hand, if we convince people in power that people with autism have a peculiar set of traits that can add value to their workforce, then…people with autism will still be marginalized, but at least some of them will be employed.

Practically speaking, I recognize that there is a real-world trade-off going on here. I recognize that, as abhorrent as the practice may seem to me, affirmative action serves a purpose. I recognize that marginalized but employed is better than marginalized and unemployed.

But, aside from these practical realities, the truth is this doesn’t change anything. The real problem isn’t simply that people with autism are unemployed or that people who are not white are less favorably employed than people who are white. These very real, life-altering hardships are symptoms, both of them, of a much bigger cultural disease.

Prejudice is alive and well in our cultures. Prejudice has a deep, lasting, traumatic, and obviously negative impact on the lives of real people. The cure to this cultural disease, the cure to prejudice, is not to tweak prejudice to be more favorable. The cure to this cultural disease is for everyone within the culture to open their eyes and see a fellow human being—not a white male or a black female or a black male autistic or whatever other boxes you might put a person in.

I don’t care what your skin color is, what your diagnosis is, or whether you have a diagnosis. You have value. You have something you can contribute to society. You have a reasonable expectation to earn a living contributing in some fashion to society. When applying for a job, you should be judged solely on whether or not you can do the job that needs to be done.

Granted, in certain cases, designing jobs that meet organizational needs and yet accommodate for existing weaknesses is a very good thing. I’m all for it. Until you stick a label on it. As soon as you designate that job to a certain label, you dehumanize the people who can do the job with the accommodations in place. The fact is there are people who are similar to people with autism who do not qualify for or do not have access to an autism diagnosis. Some of them have other diagnoses. Some of them have none. Can they do the job? Can they benefit from the accommodations? Does a label really matter? The fact is that the label only matters in a world where prejudice reigns.

Change and Predictability

  • Posted on June 5, 2013 at 10:00 AM

Sometimes we know the change is coming. We can plan. I’m big on planning. We can foreshadow. The boys are big on foreshadowing. This is something we can handle.

Sometimes we don’t know the change is coming. Sometimes it just hits. No plan. No foreshadowing. Mark used to describe these situations as duck-and-cover moments.

Lately, we’ve experienced a lot of slow, known changes. Gentle shifts are easy to handle. Some of these are cyclic. The boys like those best.

For example, on school nights Willy usually only gets one reading or it takes too long to get him to bed. On non-school nights Willy gets two or more readings. This helps him to adjust to the change in his routine, because there is a predictable shift in the routine itself.

This is the last week of school for the boys. It’s a predictable change. We are foreshadowing. We are adjusting our plans. And we are building predictable shifts into the changing routines. The boys seem to be looking forward to the end of school. Their routines are shifting and changing, but the predictability of it is familiar and comfortable.

This too is a skill to be cherished.