Profoundly Severe Autism Level 3

*tap, tap, tap* 

Is this thing on?

I haven't written on this blog in literally (the real literally, not the fake literally) years, and you know there is only one thing that could get me back here. That's right, folks, it's another autism community controversy.

This time it centers around whether people at the more extreme end of the autism spectrum, those with high support needs, challenging behaviors, and intellectual disability, should have a separate label of "profound autism." I'm not going to spend any time on the word "profound." It could be "severe" or "extreme" or something else entirely, but the idea is to provide a different diagnosis for that—our—population.

After the last update to the Diagnostic and Statistical Manual of Mental Disorders (DSM), to version DSM-5, the designation of "Asperger's syndrome" was removed in favor of a single autism category, with three levels. Someone with level 1 autism would require fewer supports, where someone at level 3, would require high level of support.

I have long believed that the type of autism Moe struggles with, and yes, suffers from, has very little if anything to do with the type of autism that most autistic self-advocates hold as, if not always a gift, a part of their very identity. These are people who can talk (or otherwise communicate), read, live at least somewhat independently, hold jobs and post on social media. Moe can't do any of that. Not even a little bit.

This debate has appeared periodically on social media, with one side saying you can't be more severely autistic any more than you can be extremely pregnant. You are or you aren't. Those of us caring for people at the severe end of the spectrum know that isn't true. I find it, in fact, ridiculous. This discussion is getting more attention lately because the journal The Lancet published an article called "A way forward to improve the lives of autistic people" that advocates for a designation of "profound autism." The don't go so far as to propose a different diagnostic category, though I think that would be a good idea. Following that article, autistic author John Elder Robison posted a few well balanced and thought out threads about this topic bringing even more light to it.

Some of the critiques I've heard:

"A new diagnosis would separate those categorized as "profound" from other autistics, the people who are like them and can best provide insight and support." I'm not sure how, but I suppose the idea is that they would no longer be at the same schools or other programs. But they aren't now. Moe isn't exactly attending happy hours with other autistic people. Further, the group making this particular argument is notorious for bullying parents. They don't want us sharing our most challenging stories at all, claiming to want to protect the dignity of our loved ones, while actively working against programs and policies that would provide our kids that dignity. They fight against, for example, funding for residential facilities ("institutions"), even though larger residential settings are exactly right for people like Moe. When I expressed that I'm further and further convinced that the disorder Moe has has very little in common with the autistic people in that thread, I was told that's because I "haven't been listening." But who exactly am I supposed to listen to? Someone who tells me they know my kid better than me because they are "Actually Autistic" (even if self-diagnosed), but don't actually know him at all?

"A different diagnosis would mean even fewer services." I can understand the worry that our kids would fall into a category of "unteachable" so they wouldn't get as many special education services and I do see how the school districts would try to hold a diagnosis against them. I'll never forget one school administrator, as I was pointing out all the ways their program was inappropriate for Moe, tell me "maybe that's just his rate of learning." On the other hand, Moe, and kids like him, aren't getting appropriate services now. The Regional Center, the administrative body responsible for providing services to people with disabilities in California, has offered us a lot of services that don't actually exist, like so much vaporware. Respite providers can't manage Moe, there are no group homes available at all (let alone appropriate ones), crisis intervention programs are useless, and short term stabilization facilities are also full. But because they can serve those with less extreme needs, the regional center, and DDS by proxy, can still claim success. You see, they are only failing the most challenging cases.

"This is a parent led initiative, not coming from autistic people themselves" Nothing about us without us and all that. It's important. But this isn't about them. It's about Moe and people like him. Of course this is coming from parents. Who else? Moe literally cannot speak for himself. Moe doesn't talk, or type or use a letter board or anything else. He can use his AAC device to ask for food, or water, or to go for a walk, but he doesn't know how to count, let alone advocate at an IACC meeting. He can't even tell me when his stomach hurts (though believe me, mine does). The "about us" in this situation has to include me and Jeff.

"You only want a cure." This is a tough one to argue with because, yes, I do want a cure. I want to help Moe. Anyone who knows him, connects with him, sees his sweet nature, and sees how much he struggles. He hurts himself and others, and that's no way to live, for him or for us. Autistics argue that that part isn't autism, those are co-morbid conditions, like mental illness or something physical. But there's no way to separate those things. It's one thing. It's just Moe. You can't separate the "good" parts and call it autism and the hard parts and call it something autism adjacent. He is a whole entire person and that is exactly the point. Autism research right now is done almost entirely on the non-profound population. They don't want a cure for their autism and I respect that. Cures aside, we don't even know what will help Moe feel better and live his best life. Every change we make, in routine, in school or housing, in medication, is trial and error. There's no other choice. But what if we had better information? There's no guarantee that a separate categorization would suddenly present new interest in this population, but it would mean they wouldn't be lumped in with research focused on autism more broadly. There would be a new category to study and understand.

According to the Lancet:

The past decade has seen major advances in autism research, but this has mainly been focused on basic science and translational research. Strikingly little is known about many fundamental issues of relevance to the care of autistic people. Even the most basic questions, such as which interventions are effective, for whom, when, and at what intensity, remain largely unanswered. Without diminishing the importance and promise of basic science in the future, the Commission argues that governments and funders must also prioritise investment in clinical research that addresses the immediate needs of autistic individuals and their families. Answering these crucial questions would allow interventions to be developed that are scalable worldwide and resources to be allocated more equitably, targeting those who are most likely to benefit.

Designing a Home for Autism

I’ve spent my career working for technology companies in Silicon Valley. But I almost gave it up to become an Interior Designer. In the end, I decided to keep my tech job, but planned to use my skills to make my own home beautiful.

Then we had kids. And one kid in particular, my eight year old, Moe, has influenced my new design style. I use that word loosely. Our home is designed purely to make things easier and safer for Moe. Let’s call it “nouveau practical” or “Moe­nimalist.” (It’s okay to groan.)

Moe’s Room

When we’re out with Moe, we have to hold his hand nearly constantly. So home needs to be the place he can have some freedom. It’s hard to make an entire house safe for Moe, a strong and active kid, with Spiderman­like climbing skills, but little sense of safety or rules. I want Moe’s room to be his sanctuary.

Moe’s room has only a bed, some soft pads on the floor and a big crash pillow. The dresser that my husband painstakingly stained when I was pregnant had to go because Moe was climbing on ­ and jumping off ­ it. We put a tall narrow dresser in the closet instead.

The room, though bare, doesn’t scream “autism!” I even attempted a bit of a retro­-surfer theme, complete with surfboard decal and comforter. But look closely and you’ll see that the surfboard blanket is weighted. The closet that holds Moe’s clothes also contains a diaper genie because he’s still in pull­ups. There’s a drawer dedicated to chewies. And a lock on the closet door. There’s a carabiner hanging from the ceiling so we can hang a swing, a comfortable spot for Moe to use his iPad or look through magazines.

Our most ingenious invention was created to keep Moe from jumping off his window ledge. We were afraid he was going to hurt himself, so we installed a sheet of clear acrylic across the window. This also allowed us to hang blinds, in between the window and the acrylic. Prior to this, he tore his wood blinds down, and we had to put a nearly opaque film on the window so it would be dark in the room at night.

I think Moe really likes his room. When his “motor is running high” he can go there to calm down. He has figured out an ingenious way to spin the swing really fast when he wants stimulation. The walls are dirty from Moe’s feet as he pushes the swing. There are bits of the magazines he likes to tear up all over the floor.

Everywhere else

The rest of the house varies by room. Every door, including closets, is childproofed. A couple of doors have keypad locks so my daughter can get into her room and the bathroom without needing help.

We’ve got a trampoline and locked toy cabinet in the living room and a locked toy cabinet. (The latter more for mess control than safety.) For a while, as part of Moe’s homeschool program, we had little pieces of blue painters tape with velcro on them in front of every room in the house. There’s a baby gate across the kitchen. It doesn’t keep Moe out but it slows him down a little. Some rooms, like our office and master bedroom are full. My daughter has a lot of toys and art supplies that I’d much rather keep in a common play area. Other rooms are nearly empty. There are no curtains in the living room and very few paintings on the wall. I can’t have shelves to display knick­knacks or family photos. Our floors are beat up and need to be refinished. I agonized over which white to choose for our walls. Instead of “Winter White,” I should have found the best paint match for the marks Moe leaves as he slides his fingers along the walls.

I could go on. There are so many ways we’ve altered the design of our house and the design of our lives, to meet Moe’s needs. I’m not always happy about it. My house can feel closed and dark, when I really want open and light. It isn’t beautiful. But Moe is safe and comfortable here. And there is beauty in that.

This post was originally written for Autism Speaks.