More Challenged Than Challenging, part 1

“That cat just scratched/bit me out of nowhere!” is a complaint I’ve heard many times. And on occasion, it’s true. A startled cat may injure you in a panic, especially if you are trying to stop it from running away. And some cats have the cat equivalent of serious mental health problems.

But most of the time, when someone says that, what really happened is that it wasn’t “out of nowhere” at all. The person just didn’t know enough cat body language to see the signs that the cat was getting ready to attack, either in play or out of annoyance. They didn’t notice the slight change in the angle of the ears, the rise of the shoulders, the increased motion of the tail. Or they noticed but misinterpreted. If you’re used to dogs, who wag when they are happy, you might not realize that a cat’s tail moving back and forth means something very different.

[Note: I always hesitate to use animal metaphors when talking about people with developmental or intellectual disabilities. I want to be very clear: people with these disabilities are no more animalistic than any other humans. However, the comparison between cats and dogs has so many parallels with the comparison between autistic people and neurotypicals that it is incredibly helpful in making certain points.]

I bring this up because I also hear, heartbreakingly often, that a lot of people with intellectual disabilities, particularly those who can’t speak or have very limited language skills, “become violent out of nowhere/with no warning.” Again: it’s true that this can happen. Some people (disabled or not!) really do go “from zero to sixty” in a heartbeat without provocation or warning. But it’s rare, and if you think it’s not, please read on.

What’s much, much, much more common is that these seriously disabled people spent most of their time so frustrated, stressed, or overwhelmed that they are very close to the breaking point. When people are very stressed (this is true for non-disabled people too!!), they have very short tempers. They overreact to the little things. They blow up, melt down, or fall apart over minor issues. And those around them are often bewildered when it happens, because they didn’t see the storm brewing beneath the calm surface.

Again, this isn’t some weird quirk that comes along with developmental disabilities. Think of a time when something stressful happened while you were hungry, exhausted, sick, or already in a bad mood. Think of how differently you’ve reacted (internally or externally) to a similar problem when you were calm and well-rested. That’s the difference I work towards with my client families, finding ways to keep my client’s general stress level as low as possible. That way, when something upsetting happens, the disabled child (or adult) is dealing with it from the best possible starting point, and is least likely to express their reaction through physical violence.

Neurotypical humans tend to hide symptoms of stress on purpose, for various cultural reasons. But often, autistic or otherwise neurodivergent people (especially as children) aren’t hiding the signs of their distress at all — it’s just that many of their caregivers can’t read autistic body language very well (I keep mentioning autism because it’s my area of specialty, but some of my clients have other developmental disabilities). The result is lots of “out of nowhere” outbursts that have actually been building up for some time. This is where it is so important for caregivers to seek input from adults with similar disabilities but who use language more clearly. Many disability rights advocates essentially work as translators between disabled people who can’t use words well (or at all), and neurotypical people who don’t understand most of what the nonverbal person is communicating nonverbally.

Often, parents argue that these autistic advocates who use language fluently aren’t “disabled enough” to have insight into the experiences of nonverbal autistic children. But some of those eloquent adults were once nonverbal children themselves. Others among them can imagine, all too clearly, how they would feel and behave if they were dealing with an inability to communicate in words on top of all the problems they already cope with.

[Another Note: Autism is not a tragedy, and neither is disability generally. People with severe disabilities can have rich and meaningful lives without the ability to hold a job, live alone, or do many of the things that typical people assume are necessary for happiness. But no one ever said that being profoundly autistic is easy, especially in childhood. And since some medical problems are more common among autistic people than non-autistic people, autistic kids may also be dealing with pain from a condition that hasn’t yet been diagnosed and treated. Dr. Clarissa Kripke, MD, FAAFP has written eloquently about how often behavioral problems, including aggression and self-injury, are the direct result of a specific medical issue.]

I just read an excellent article using a soup and salad bar as a metaphor for neurotypes, where neurotypicals are people whose meal consists mainly of bowls of soup, while autistic people’s experiences are like a meal that’s mostly from the salad section. Two different plates of salad (two autistic people with very different needs and abilities) might not resemble each other very much, but they still have many commonalities that soup doesn’t have at all. Research on autistic people has traditionally focused on the trouble autistic people have understanding and relating to non-autistic people, but people are finally starting to realize that the misunderstanding goes both ways, and how important it is for non-autistic people to learn more about relating to autistic people. So often, autistic children are trying very hard to communicate to their neurotypical parents in ways that the parents simply don’t recognize. Is it any wonder they often end up resorting to violence when their every other attempt at communication has failed?

There are many things caregivers can do to reduce the overall stress level of the people they are caring for, and one happy result of this is much less aggression from the disabled person. I speak from my experience of 8 years as a respite caregiver for a number of young people with assorted developmental disabilities, most of whom are nonverbal or minimally verbal, and some of whom have profound intellectual disabilities as well.

The wonderful thing about being with someone a few hours each week for many years is that you can really see the changes over time, as a family fine-tunes their way of life to best meet their child’s specific needs. With such a long-term relationship, I get to know my clients very well. But because I have some distance from the situation, I can sometimes see patterns that the immediate family are too close to notice. This puts me in a unique position to provide the occasional helpful insight, and when I can identify a change that will improve someone’s life, even a little, it makes my entire career feel truly worthwhile.

But making these improvements takes time, effort, and some outside-the-box thinking. Sometimes, problems and their solutions are neither obvious or immediate. I’ll give you an example (the story below is true, the name is fake).

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In his early teens, Mike sometimes literally went directly from hugging me to hitting me, seemingly without warning or reason. But with careful observation, his family and I unraveled this problem. First, we realized that both sudden violence and requests for physical affection happened most often when Mike was tired.

So we learned to watch for the early signs that Mike was getting fatigued, before it got to the stage where he was emotionally volatile. That allows time to leave an event, or get him ready for bed, or provide things that calm and sooth him, such as music. If I know that Mike is tired, I give him space as much as I can. If I’m standing right next to him, it’s easy for him to lash out at me before he can think better of it. If I’m across the room, he’s got more time to catch himself between impulse and action. A little behavior change on my part does a lot to improve the whole situation.

The second part of the problem was that Mike didn’t have a good way to let people know when he was ready for something (like a hug) to end, or wanted someone to go away. And when Mike doesn’t know what to do in a situation, he gets upset, and then he gets aggressive. Mike has a severe speech impediment, but with help from his therapy team, he learned to say “leemeelo” (“leave me alone”) to let us know when he’s getting frustrated and needs someone to back off until he calms down.

He’s 18 now, and he hasn’t hit me in several years. Of course, he hasn’t become perfectly nonviolent — this is a story about improvement, not a fairy tale where everything ends up perfect. He does sometimes hit his immediate family members, but don’t we all get angry with family more easily than we’d like? Mike also still throws things when he’s very upset, but they usually aren’t breakable and aren’t aimed at anyone. He’s still someone with limitations that frustrate him unbearably at times, and he still doesn’t have the emotional maturity of most people his age. But he is also much less prone to violence than he used to be. I think that’s definitely worth the effort!

I didn’t say we can make aggression disappear completely (isn’t the same true of neurotypical people?) — but we can make it less likely, less frequent, and less intense. Some of Mike’s improved self-control, I’m sure, is due to the fact that he is growing up. But I doubt he could have made so much improvement without the supports we provided. In addition to this specific solution to this specific trigger, we’ve done a lot of things to help Mike’s life become more orderly and predictable. As a result, he’s generally a happier and calmer person, and slower to anger than he used to be.

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Most of this is actually just the lead-up to what I intended to write tonight, but it’s already gotten longer than I’d prefer. I will have to make this a “Part 1” and continue in another post.