Straddling the Autistic/parent divide

The division in the autism community between autistic adults and parents of autistic children is one that I find particularly frustrating, because I belong to both groups and feel allegiance to both.

On the internet, I have encountered some intense hostility from autistic advocates who know that I’m a mother, but don’t know that I’m autistic myself. This hostility was not provoked by anything other than me being an “autism mom”. I support and identify with the neurodiversity movement, I don’t want to eradicate my son’s autism, and I am not seeking accolades for being an “ally.” Incidentally, in these conversations, I do not feel the need to identify myself as autistic or mentally ill or otherwise neurodivergent. I shouldn’t have to disclose my neurology in order to defend myself as a mother.

I have also encountered hostility from other “autism moms” when I objected to attempts to make murders (and sometimes torture) of autistic children somehow about the child instead of about the parent. Fortunately, most of the moms I know both in person and online, are as horrified by these stories as I am; but there are certainly some out there who will try to make it about how hard parenting an autistic child is, instead of the parent being a sadistic person who preys on the vulnerable.

There are things that are worth being angry about – the example I just gave is one. But most of the arguments I see online between parents and adult autistics are not about things like this. I see people from both groups starting out from a place of defensiveness and/or hostility, resulting in conversations where they are talking past each other, with very little attempt to come to a mutual understanding. Example:

Parent: “My son wears a harness that I can grab onto when he bolts during a meltdown.”

Autistic: “That’s horrible and degrading. Your child is a PERSON, not a dog.”

Parent: “Not everyone is as high-functioning as you.”

Autistic: “Functioning labels are ableist!”

The parent comes away from this conversation thinking that adult autistic advocates completely don’t understand what it’s like to parent their child, and therefore their perspectives are not worth listening to. The autistic comes away from the conversation thinking that autism parents believe their children are essentially animals. But from the beginning, both are making assumptions about the other: the parent is assuming that the autistic person is mildly affected and cannot understand their situation, and the autistic person is assuming the worst about the parent’s motivations.

Here’s an alternative version of the same conversation:

Parent: “My son wears a harness that I can grab onto when he bolts during a meltdown.”

Autistic: “Is that really necessary? It seems degrading to me, like you are treating him like a dog.”

Parent: “Yes, unfortunately, it is necessary right now. He’s been almost hit by cars so many times, and I’m not willing to take that risk. Also, he tells me that he finds the harness comforting, like a hug.”

Autistic: “Huh. OK. I still don’t like the idea.”

Parent: “I’m not crazy about it either, but I like it better than the idea of my son being dead.”

Notice how, in the second conversation, the autistic person’s severity level and the issue of functioning labels didn’t come up – because they are, actually, not relevant to the issue being discussed. Shocking! At the end of the conversation, these two individuals may not be in complete agreement, but they each understand where the other is coming from. They don’t come away believing the worst about each other.

Can’t we have more conversations like that?

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Supermom

I have an alter-ego. Her name is Supermom.

Supermom wears makeup, which she compulsively checks in the car mirror because any imperfections in her mask might let her real self show. She dresses nicely. Maybe a little bit too nicely for such mundane occasions as grocery shopping and driving her child to therapy. The clothes are from thrift stores and from relatives who didn’t want them anymore, but you’d have to look closely to see the holes.

Supermom might be tired from getting up at 2:30 AM, but she has her shit together. She keeps detailed medical records and educational records. She makes to-do lists. She’s on time to IEP meetings and parent conferences. Usually. She schedules appointments and keeps them.

Supermom is comfortable with social interaction. Mostly. If she’s not, it’s just because she got up at 2:30 AM and she’s really tired …. It’s definitely not because she’s autistic or struggling with paranoia.

Supermom is mentally stable and does not need medication in order to function in day-to-day life.

Supermom does not have any weird political opinions.

Supermom is an advocate. She argues with doctors. She fires therapists. She files formal complaints. She keeps records and paper trails.

Supermom is involved in all of her kid’s therapies. She also implements the therapies at home on a daily basis, due to her endless amounts of energy and patience and lack of personal needs. She makes visual supports and uses them consistently.

When Supermom comes home, she wipes off her war paint, and there’s just me.

I laugh, I cry, I make terrible jokes, I feel overwhelmed, I struggle to keep my eyes open, I get mad, I yell, I apologize, I hug my son, I make silly faces, I stomp like a dinosaur. I put on a TV show and let him eat 3 boxes of yogurt raisins so that I can sit on the couch playing word games online. I rock back and forth and flap my hands. I take my meds. I grapple with self-doubt. I get worked up about politics. I slack off on therapy strategies. And I really do get up at 2:30 AM to give breathing medications and comfort and love.

I’m not sure how many people my Supermom persona actually fools – maybe no one. But I’m aware that I’m expected to try. At least try to pretend to be superhuman. And how my son is treated, the services and supports and medical care he gets, depends on my trying.

So I do. You’re welcome.

Neurodiversity’s gatekeepers

I read this yesterday, and I want to link it here because it’s so good and so important: Dr. Simon Baron-Cohen Does Not Understand the Neurodiversity Paradigm

Here’s a quote from the article:

“The Neurodiversity Paradigm says that all brains are good brains and no one is disordered or in need of a cure or treatments that work to the detriment of their personhood.” – Max Sparrow

I passionately agree with this interpretation of the neurodiversity paradigm. Unfortunately, Dr. Baron-Cohen is not the only one who espouses the view that if a condition affects one’s functioning beyond a certain point (defined by whom?), it is no longer a “difference” or part of the person’s identity, but a “disorder” to be cured by any means. I hope that the people who see it this way are in a minority, but I don’t know that they are.

Here’s another example of this type of thinking:

“Autism is a natural form of human neurodiversity. Labeling it as a “mental disorder” or a “disease” has no scientific basis, has no benefit for Autistic people or their families, and leads inevitably to stigmatization, shame, and marginalization. Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations. Stop worrying about the latest changes to the DSM’s diagnostic criteria, and just remove autism from the DSM entirely, just like homosexuality was rightly removed years ago.” – Nick Walker (emphasis added)

Ohhh, OK, I get it. Having autism is fine, because it’s not a mental disorder. Better take it out of the DSM so that the stigma from all those mentally disordered people doesn’t rub off on us! And if an autistic person has a comorbid mental illness, we’ll just stigmatize them for that, not for the autism.

To sum it up another way:

Blind = “Hey can you teach me to read Braille?”

Deaf = “I really admire your culture!”

Physically disabled = “Thanks for the curb cuts!”

Autism = “Natural form of human neurodiversity.”

Mentally ill = “AHHHHH HELP THERE’S A CRAZY PERSON SHARING A DIAGNOSTIC MANUAL WITH ME GET ME OUT OF HERE!!!!!!”

I think of people who think this way as Neurodiversity Snobs. They are the self-appointed gatekeepers of the neurodiversity movement. They stand at the gate, checking everyone’s credentials:

“Ah, I see you have a job and you’re married? Quirky but brilliant? Go right in.”

“Wait a minute, wait … this says you’re psychotic and frequently homeless? I’m sorry but you can’t go in. You make a bad impression and … you’re just not really our type.”

“Hi there. Looks like those accommodations in college really worked for you! Well, go in, they’re just serving the cocktails.”

“You’re intellectually disabled? Um … I’m not sure what happened but they shouldn’t have sent you here. That was a mistake. Yeah, just head over there to the Eugenics Division, they should help you out.”

Fuck that. Seriously, fuck it.

I reject any articulation of the neurodiversity paradigm that excludes certain people because they don’t have the “right kind” of neurodivergence.

Sanesplaining

I got into an argument with a stranger the other day on a mutual friend’s Facebook page. It started as a debate over the role of mental illness in the Las Vegas shooting and very quickly became a discussion of whether I was qualified to have an opinion on the matter. My opponent, a white male psychology student, told me “You don’t understand mental health.”

Well, maybe that’s true. Maybe I don’t understand mental health. But I think I have a decent understanding of mental illness – primarily the depressive-bipolar-schizophrenic variety and PTSD – from having lived with it for most of my life and having lots of contact with people who live with it, treated and untreated. Of course I am always learning more and there is much that scientists don’t understand either; and my knowledge and understanding of things like substance abuse, personality disorders (including antisocial personality disorder), is more limited.

There is no evidence that Stephen Paddock was mentally ill or that “counseling” would have prevented what he did, had he been motivated to seek it out (certainly money was not a barrier for him). He carefully and deliberately planned the massacre over a long period of time in a way that somebody with the cognitive impairments often accompanying psychiatric illness would be unable to do. His preparations included modifying legally purchased rifles to function as automatic weapons and installing surveillance cameras outside his hotel room.

I hold the unpopular opinion that some people simply enjoy hurting others and are basically bad people. You can label that a mental illness if you want, but these people are often very clever, very manipulative, good at hiding at their crimes and appearing charming. They have no functional impairment or apparent distress due to their actions. Very sadly, I have some personal experience with this, too. What do we call these people? What do we call the child pornographers and the serial killers?

That’s the discussion we could have had – the psychology major and I. But the discussion we ended up having, centered on me and how ignorant I am. He picked at my use of words; he was passive-aggressive and condescending. As it happens, I have not been terribly stable lately, and I snapped.

No doubt, the strong and colorful language that I ended up using, completely discredited everything I’d said. But I was discredited in his mind long before then. Why? Probably because I’m female and not a psych student and I disagreed with him. Disclosing that I’m crazy (and using the word “crazy”) didn’t help my case.

What upset me, and left me in a fragile and agitated state for the rest of the day, was not that someone disagreed with me. I actually enjoy debate. It was the way he picked apart everything I said. It was the implicit sneer in his comments. I hate to think that this person may become a therapist. I hate to think that people will go to him for help and that he will impose his preconceived ideas on their realities, then pick at them and condescend to them when they object. We don’t need any more therapists like that. That’s the last thing we need.

Navigating the world with a brain that filters and connects things unpredictably, that turns on you at odd moments, is scary. Depending on how much insight we have into our condition, it can make for a lot of self-doubt and self-questioning. “Are my perceptions here correct? Is this real? Will I look back on this later and realize my thinking was totally distorted? Or am I right this time? I’ve turned out to be right before.” Having a couple of trusted individuals whom one can consult in these instances of doubt is very helpful. But this dependence on others to confirm or dispute our interpretations of our own experiences makes us very susceptible to gaslighting, and to what I’m going to call sanesplaining.

Sanesplaining is when someone who does NOT have a major psychiatric condition themselves, tells someone who does what their condition is “really” like, what they experience or should experience, how they feel or should feel. It also involves discrediting and disputing the person’s thoughts and opinions. I’m going to use an example here from one of my favorite movies, Benny and Joon.

Joon is a highly intelligent young woman with an unspecified mental illness (mostly resembling schizophrenia). She is cared for by her older brother Benny. After Benny finds out that Joon has begun a sexual relationship with their roommate, Sam (who’s also neurodivergent, with a learning disability and some autistic traits), Benny goes into a rage and throws Sam out of the house. At this point, Joon tells Benny, with strong feeling and conviction, “I love him!”

“Yeah?” says Benny. “Well you are crazy.”

There you have it. Sanesplaining in a nutshell.

Our feelings and thoughts are constantly in question. It’s not always that overt. It might be a family member asking “Did you take your meds?” when we’re trying to explain why we’re upset about something they’ve done. It might be a psychiatrist saying “No, that’s not a side effect of this medication”. (Hint: if your psychiatrist says this, FIND A NEW ONE.) Or it might be some douchey psychology major on the internet, saying “You used a clinically imprecise term, therefore your opinion is worthless. Your lived experience doesn’t matter.”

Functioning labels for mental illness?

I don’t know if this is a recent development or if I’ve only recently noticed it, but for the past year or so I’ve been seeing lots of articles using the terms “high-functioning” and “low-functioning” to talk about psychiatric conditions like depression. Apparently, using them for autism wasn’t bad enough. The autistic community has addressed, many times, the problems with these terms in the context of autism; I want to discuss them in the context of mental illness.

Many of the points to be made are the same as for autism. We all function differently at different times and in different circumstances. The resources available to us – which include money, supportive family, good quality therapists – can make a tremendous difference. A person can have multiple mild comorbids that, together, severely impact functioning, which makes terms like “high functioning depression/autism” linguistically imprecise and misleading. (I don’t have a problem with severity labels. While functioning labels describe the person, severity labels describe the condition. Important difference.) Finally, dividing people into “high” and “low” diminishes the challenges faced by one group and the autonomy of the other, and tends to create division rather than alliance.

There is one big difference from the discussion surrounding autism: mental illness can be medicated. Not always successfully – and medications bring their own problems. But it introduces yet another variable.

One person might be “high-functioning” on medication and “low-functioning” without it. Someone else might be “low-functioning” on medication because of treatment-resistant symptoms. Another person might be “low-functioning” without medication but unable to take medication because they previously developed Neuroleptic Malignant Syndrome, or unwilling to take it for various reasons. And yet another person may be “high-functioning” without medication and choose not to take it, even though it could potentially resolve their symptoms, either because of previous side effects or they just don’t like the idea, etc.

Personally, I function pretty well ON medication … when it’s working. By functioning pretty well I mean I get the necessary things done. My son gets his medicines and his food and his diapers changed, and he gets to school and therapy and medical appointments. Those are the most important things, so I make sure they happen. I make myself acceptable-looking in public even if I haven’t showered in a couple of days. Things like cooking, cleaning, talking to people, those often take a back seat when my mood dips. I don’t always have the energy to brush my teeth, or to walk across the room for something that isn’t an emergency. I do my best though and I have enough good days to make up for what I’ve let slide on the bad days.

Again, this is ON medication. I am also aware that my current medication regimen won’t work indefinitely.

I’ve read too many articles where people who identify themselves as “high-functioning” anxious/depressives don’t even address whether or not they take medication, or why/why not. But if we’re going to talk about functioning, medication matters, because one of the primary purposes of medication is to restore/increase a person’s ability to function in society. It matters, regardless of how you feel about medication. It has profound implications for society, for how we think and talk about human value, work, autonomy, responsibility.

 

Catching octopuses, or, my love-hate relationship with the DSM

When I was in my teens and early 20s, both during the period when I read the DSM like a Bible of self-knowledge and during the anti-psychiatric period where I rejected the DSM altogether, I took it for granted that the diagnostic categories in the DSM reflected actually distinct disorders. I know now that the correspondence is much more complicated.

Here’s a metaphor. A mental disorder is like an octopus. It has eight tentacles, wiggles around, squishes to get through tubes, and changes color. The diagnoses in the DSM are like little cardboard boxes. Now imagine that an octopus is falling through the air (don’t ask me why, it just is) and you’re trying to catch it in a relatively small cardboard box. As it falls, the octopus keeps changing shape and color, and when you finally catch it, three tentacles are sprawled over the edges of the box. Oh well, at least you got most of it, right? I mean, until it crawls out.

That’s basically what psychiatrists are doing when they diagnose: trying to catch an octopus in a box. The actual condition, this complex reality that starts in our brains and is intertwined, whether we like it or not, with our personalities and experiences and interpretations of the world, is too big and shifty and multi-tentacled to fit neatly into a box. Sometimes though, diagnosticians can catch most of it, treat accordingly, and it all makes sense for a while … until the octopus moves. Which it will eventually do, because it’s a living thing.

For those of you who have no idea what the hell I’m talking about, let me be more concrete.  It’s not uncommon for a diagnosis of major depressive disorder (MDD) to change to bipolar II when hypomania emerges among the recurring depressions; for bipolar II to change to bipolar I when the person has their first full manic episode; or even for bipolar I to change to schizoaffective disorder when hallucinations persist outside of manic and depressed episodes. I’ve personally observed these progressions in my own family. Was the initial diagnosis wrong? Not really; the symptoms changed, the presentation developed.

Furthermore, I know a lot of people (most notably myself!) who have outlying symptoms, symptoms that don’t quite fit the diagnosis that seems most appropriate for them. A good example of this is someone with a bipolar II diagnosis who’s had one full-blown manic episode in 50 years. Does that one episode make her bipolar I? The flavor of her disorder is definitely more depression/hypomania. The people I know who have schizoaffective disorder probably fit their diagnosis the best, but schizoaffective disorder is a controversial diagnosis that some psychiatrists want to get rid of, so that just kind of proves my point.

Lately I’ve come to believe that there’s a multidimensional spectrum of psychotic/affective disorders, similar to the (also very complex and multidimensional) autism spectrum.*** And where you are on the spectrum can shift over time, in more than one direction.

Refreshingly, I am not the only person to think this way. There’s even actual scientific evidence for it. The “Kraepelinian Dichotomy,” which made a hard distinction between mood disorders and schizophrenia, is being called into question. (I’ll post some links below for those who want to dig deeper but are too clinically depressed to google.) Let me just state here that in one study, 45% of patients with psychotic disorders did not fit a diagnosis of bipolar or schizophrenia, but had elements of both. That’s almost half.

Here’s a little graph to illustrate how I kind of envision the spectrum:

mood spectrum (2)

 

The Y axis is mood, ranging through shades of depression, hypomania and mania. The X axis is psychosis, ranging from no psychotic symptoms through fluctuating paranoid delusions to round-the-clock hallucinations with anosognosia. Then there’s the Z axis coming out towards you, a third dimension, for anxiety.

You will notice that I took a shocking liberty and put “negative symptoms” (of schizophrenia) on the mood axis, although schizophrenia is not supposed to have a mood component. Well, I may be wrong, but do a google search and you’ll find articles in medical journals trying to figure out what the difference is between negative symptoms and depression. There must be a difference, because the Kraepelinian Dichotomy says these are totally distinct disorders, right? And then you will find stupid answers being proposed such as that depression is different because depressed people feel “sad” and schizophrenic people don’t.

Sorry to break it to you but I don’t feel sad every time I’m depressed, nor is sadness required for a major depressive episode in the DSM. Often as not, I just feel sort of bored and disgusted with everything (anhedonia), and like I’m moving through molasses (psychomotor retardation). My body aches, my brain feels slow and stuffed with cotton, everything takes more physical and mental effort. My speech slows down and I have flattened affect. These are all considered mood symptoms in my case because I’m diagnosed with a mood disorder. However a schizophrenic person could have the same symptoms, and their anhedonia, psychomotor retardation and flat affect would not be considered mood related. So are they really inherently mood symptoms, or do they only look that way in a certain context? And what about psychosis – if I become psychotic during a depressive episode, does that mean psychosis is a mood symptom?

Anyway. Back to the graph.

Coordinates represent a point in time. A person might cycle between two or more sets of coordinates, or move steadily in one direction across the graph. Over the course of a lifetime, some people will have a dot here or there (an isolated episode of psychosis, for instance, or postpartum depression) while others of us will have a big old winding road-map of places our brains have been.

It’s OK to come up with official names (diagnoses) for the most common patterns on these road-maps, as long as we don’t let them limit and distort our perceptions of them. Diagnostic labels are useful mainly for medical professionals and researchers; understanding the particular dimensions and coordinates of one’s own condition is much more useful and empowering to those of us actually living with it.

 

Further reading:

With his book “Why am I still depressed?”, Dr. Phelps helped me begin to reconceptualize my own recurrent depression as a form of bipolarity. Since I have double depression (probably the reason I don’t experience clear hypomania very often), the chart on this page made a particular impression on me:  http://psycheducation.org/diagnosis/bipolar-diagnosis-spectrum-or-yesno/

I totally geeked out over this article. This is the source for the 45% statistic and the whole thing is just super interesting:  A dimensional approach to the psychosis spectrum between bipolar disorder and schizophrenia: The Schizo-Bipolar Scale

This scientific editorial concludes: “Moving to a spectrum concept (be it with categories or dimensions) with recognition of overlapping pathogenetic factors and varying expression (dependent upon both genetic risk and environmental exposure) would allow a confident and clear diagnosis to be offered (perhaps ‘psychosis-spectrum illness’ or ‘ mood–reality disorder’), with a clear explanation that some specific tests and a period of observation will help to clarify the likely course of illness and response to treatment. This would be greatly preferable to the current situation and the inevitable consequences of damage to the therapeutic alliance caused by diagnostic revisions.” If you agree with me that that quote was awesome, and are now meditating on the implications of a term like “mood-reality disorder” (but what is reality??? feeling philosophical now), you’ll enjoy the whole thing: The beginning of the end for the Kraepelinian dichotomy

***Random footnote: I’d like to see a graph with the same concept for the Autism Spectrum, with dimensions including social and sensory components and whatever else autistic people jointly decide is most important.

“Least restrictive”? Disabled spaces and reverse inclusion

This post is not about parking spaces (sorry to disappoint). It’s about education, and also adult social life.

Under IDEA, mainstreaming of disabled students in regular education classrooms is seen as the goal of special education. As much as possible, students are to be educated in the Least Restrictive Environment. (The least restrictive is a general education classroom, followed by a mixed or inclusion classroom, followed by a “self-contained” classroom in which all the students are disabled.) Similarly, organizations that work with disabled adults at least pay lip service to the notion of including them in community life as much as possible.

Regardless of practical shortcomings, the goal of inclusion is obviously a HUGE step forward from where we were only decades ago, when disabled people were placed in crappy institutions, often denied an education, and in other ways automatically segregated from mainstream life. And the risk of going back to that is frighteningly real. There is plenty of push-back right now from people who would like to see disabled students out of regular classrooms (for example this Alabama board of education member or our current attorney general); and cuts to Medicaid services like home nursing, which allow disabled people to live at home and in their communities, could potentially force many into institutions.

So before I go further, let’s get one thing straight: Inclusion in one’s nondisabled communities is a human and civil right for disabled people of all ages. PERIOD.

Now that that’s clear … I have some problems with inclusion as it’s currently conceptualized.

First of all, I don’t think the language of “restrictiveness” is a helpful or accurate way of looking at different educational placements. I understand where it came from historically, but I think we can do better. Instead of talking about a classroom of disabled students as a place where they are restricted or restrained, why not speak of it in terms of support and environmental modification?

The preschool Monkey attends is described on the district website as “the most restrictive” option for his age group. That’s because the majority of students who attend have IEPs. In Monkey’s class, there are slightly more kids with IEPs than typical peers. All the students are taught by a special education teacher and aide.

I really have no idea what is “restrictive” about any of this. Class size is smaller than the equivalent Head Start classrooms, meaning it’s quieter and the kids get more one-on-one attention. The school facility is quite nice, with big outdoor and indoor play areas and lots of fun sensory toys. There’s a full-time nurse just down the hall with his medications on hand, and individual and group therapies taking place in the classroom or OT/PT gym. I don’t see any of this as restricting Monkey’s freedom or ability, but the opposite: it’s supporting those things. (He loves it, by the way.) So why don’t we call it “the most supportive environment” or “the most accommodating environment”? Does that not sound negative enough?

I’m not advocating for euphemisms here. I’m just wondering how, for example, self-contained classrooms might look different if we conceptualized them in terms of “most accommodating” instead of “most restrictive”. Providing the necessary amount of accommodation for an individual student – not restricting them in some way – is what a self-contained classroom should be for. It should be for students whose needs can’t be accommodated in regular classrooms. If a student can function and learn with accommodations in a regular classroom, then they should do that. They should learn in “the least accommodating environment”! Hahahaha. (Seriously, though, I went through mainstream public school and “least accommodating environment” is a pretty good way of describing it.)

Recently, I took Monkey to the “sensory-friendly” time at a children’s museum. He enjoyed it and I did as well. There weren’t many people, they did something to the lighting to make it less annoying and there were little soothing “sensory break rooms” you could creep off to. Monkey was able to borrow noise-reducing headphones, which helped with all the white noise from the exhibits and from people walking and talking in echoey hallways. (I seriously considered borrowing a pair myself. Next time.) And all the other families had autistic members or a related disability, so we didn’t get any weird looks or feel out of place at all. It was awesome.

(But maybe I should say “restrictive” instead of “awesome”? I mean, the whole environment was modified to accommodate disabled people and the people there were either disabled or supporting a disabled person, so really … restrictive.)

What I’m trying to get at is that there are often ableist assumptions in the way we talk about inclusion. Aside from the “restrictive” language, a situation can be created where a person thinks “Hurray! I’m almost normal. I get to be with normal people.” I suspect this is especially an issue when the disability is developmental, intellectual or psychiatric, as opposed to a physical disability. If you hang out with developmentally disabled people, you can see this internalized ableism in the way they compare themselves to other, “more disabled” people in their own class or group home or community center. The hierarchy of “less disabled”/”more normal”=better is imported into the disabled community.

But if we’re not allowed to have a disabled community, a positive disabled identity, then we’re stuck with – at best – the almost belonging of being the not-too-disabled person in a room full of typical people. Which is why, while exposure to and interaction with nondisabled peers is important (after all, there are more of them, and they’re always going to be around, and some of them are even pretty cool), I think we should also encourage the formation of disabled groups and spaces, where disabled children can feel a sense of safety, pride, ownership and unequivocal belonging, where they are not the odd ones out. Ideally this would include teens and adults with disabilities, as well as younger children. And then, once this space and this community is established, there is the potential for reverse inclusion: bringing nondisabled/neurotypical peers into the disabled setting.

I’ve been in reverse inclusion settings, where I’ve been in the “normal” minority. I toured a living history museum with a group of students from the local Deaf school. I’ve been to a dance that was for adults with Down Syndrome, cerebral palsy and related disabilities (most fun dance I’ve ever been to) and other similar events. In high school I sometimes would hang out with a friend of mine and her boyfriend who were both intellectually disabled; that was an informal instance of reverse inclusion. Let me tell you: your mindset shifts when you’re the minority; when you’re not the one including them, rather they are including you.

Imagine this: what if parents wanted their typical children to get a spot in their neighborhood school’s autism classroom because it was just so great? “It’s small, the teacher’s wonderfully patient, the students all get individual attention, they have lots of hands-on learning. Oh and you should see all the cool OT equipment! I sure hope Maria gets into the reverse inclusion program!” Wouldn’t that change the way we all think about special education and disability?

I have more thoughts on this subject but I’d better stop for now. I’ll end with a quote from Ian Brown’s beautiful book The Boy in the Moon. Brown’s son, Walker, had CFC with very significant intellectual disability. The first half (roughly) of the book is memoir. The second half is really a philosophical exploration of disability, especially developmental and intellectual disability. In his attempt to understand Walker and to get inside his world, as well as to find the best residential placement for him, Brown went to France to stay in a community for disabled people called L’Arche. He also visited a similar community in Canada. Towards the end of the book, he writes:

“These days, I have a fantasy of my own. In my fantasy, Walker and people like him live in a L’Arche-like community with the help of assistants. It’s a beautiful place, in a beautiful spot, with a view of the sea of the mountains, because for once, in this place, it isn’t just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful […]. In my fantasy, it is the rest of us, the normals, who have to be ‘integrated’ into their society, who have to adapt to their pace and their place.” (271)

I share that fantasy.