How to be a friend to someone with a mental illness

 

I don’t have many friends. The friends I do have, I value highly; so it makes it all the more painful when they walk out the metaphorical door. I’ve lost several friends in the past couple years, and recently upset another. If I believe their version, this was because I am a lousy friend. Sadly, these are friendships I cared deeply about, into which I put real effort, and my efforts still were not enough.

There are two sides to every story; mine is that those things which they took as evidence of me not caring about them were actually misunderstandings caused by my autism and, to a greater degree, my mental illness. I have received advice on how to be a good friend to neurotypical people; I would like to return the favor.

Being friends with someone with a mental illness (such as depression, bipolar disorder, schizophrenia, borderline personality disorder, or any combination of these) is probably more work than being friends with a neurotypical person, which raises the question: why bother?

Well, because we are people, and we have other traits too. Maybe you and your friend both share a passion for music, or for books, or for horses or cats. Maybe you grew up together, or went through college together. Your friend might have a wonderful ability to make you laugh, or to see the world differently. Your friend might be an amazing artist, or a deeply empathic listener. And one thing that all of us crazy folks have in common is that we have suffered; which means that when you’re suffering, we are unlikely to throw out platitudes like “God doesn’t give you more than you can handle!” We already know, from personal experience, that that’s not true.

So, here we go …

1) Be the one to reach out. Both people have a responsibility to keep a friendship going, and you shouldn’t be the one reaching out every single time; you should, however, expect to reach out more than you would with a neurotypical person.

This may sound unfair – both people should be reaching out equally, right? But the fact is, when you have a mental illness, there are many internal barriers to reaching out. We have a tendency to get trapped in our own heads, for various reasons. We might be depressed, or we might be spiraling into psychosis. We might be so disorganized in our thinking that we just don’t think of it, or we can’t figure out how to put the words “How are you?” together. Or, we might not reach out because we’ve decided, for some reason, that you hate us.

So when we overcome all of these barriers and reach out to you, you should see this as the equivalent to a neurotypical person reaching out 5 times. It’s the same amount of effort, the same degree of motivation to know how you’re doing or spend time with you. Really!

The flip side of this is that, at times, we may seem “needy” and be messaging you more than you like. If this is the case, it’s OK to let us know. Please just be nice about it.

2) Don’t take it personally. We forgot your birthday? We said we were coming to your party but then canceled last minute? Before you interpret these things as a personal slight, check in with us to see how were doing. These things are probably signs that we’re struggling, not signs of malice or indifference directed at you.

3) It’s OK just to BE together. Neurotypical people like to get together and do things. I like to do that sometimes, but often I don’t have the energy or resources for a highly stimulating activity. You will be able to spend more time with your neurodivergent friend if you’re comfortable just hanging out with them, not trying to cram endless activities into a two hour slot. Sit around, talk, go for a walk, play chess, do a puzzle, have coffee. If that requires too much energy for them, watch a movie at somebody’s house. (Movie theaters cause anxiety and sensory overload for me, personally. This may not be true of your friend.) Sit on a park bench together and space out. It’s all good!

4) Don’t invite them over and then, when they show up, have four other people at your house. Neurotypical people love to do this for some reason. Just because I have the energy to spend time with you, does NOT mean I have the energy to spend time with you and all your other friends. Sorry. Also, letting me know five minutes before I get to your house that other people will be there, isn’t any better.

5) Forgive them when they screw up. Forgiveness does NOT mean you stay in an abusive friendship, or that you tolerate endless amounts of hurtful behavior. It does mean that if you have a basically good, caring friend who does something crazy once in a while, you stick with them.

For example, let’s say your friend goes into a paranoid rage one day and lashes out with curse words in a manner that is out of character for them. OK, they shouldn’t have done that, and they should apologize. And when they apologize? FORGIVE THEM. I know, it’s easier said than done. But I have forgiven neurotypical friends for some pretty hurtful things, so I believe it’s doable.

And if all of this just seems not worth it to you? Well, then it’s not. But if you care about someone with a mental illness and you think they are worth the effort, I hope that these tips are helpful to you.

 

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I’m paranoid, how are you?

As the title of the post suggests, I’ve been dealing with some paranoia on and off for the last couple of months, which means med changes a.k.a. being a pharmaceutical guinea pig. The paranoia flared up again last week so I’ve been thinking and reading a lot about psychosis, and it’s something I feel should be talked about much more openly. We can’t humanize or destigmatize something if we don’t talk about it. Of course, this is an anonymous blog – but hey, it’s a start. I promise I’m a real person.

First let me clarify what I mean by paranoia. For me, at this time, it ranges from “that person hates me and wants to harm me somehow” to “the government is watching me every time I leave my apartment.” The first could potentially be true. The second is less likely to be true, although let’s face it, the government does have the capacity to watch us, so it’s more a matter of whether the government actually cares about me in particular, which it probably doesn’t. A lot of my paranoia centers around law enforcement, which was triggered by an actual (recent) bad experience with a police officer, and is also grounded in the reality that mentally ill and/or autistic people are more likely to be harmed in encounters with police than the average person because their behavior seems “suspicious” even when all they’re doing is talking fast or stimming with a piece of string (does that make the police paranoid?).

And that’s what I really want to talk about: how these delusions can be grounded in real and legitimate fears. The popular view of psychosis is something totally irrational and arbitrary. Well, it is irrational, but I don’t believe it is arbitrary. I just recently read Elyn Saks’ memoir The Center Cannot Hold (which I highly recommend). Elyn Saks is a professor of mental health law who also has schizophrenia. She has benefited from medication, but also from psychoanalysis that was not afraid to address the content of her delusions. Traditionally, psychiatry has treated the content as irrelevant.

There is definitely a distortion that goes on in my paranoid thinking – what are the chances that my husband is accessing a secret database of information about me for nefarious purposes? not great – but the underlying psychological impulse can be rooted in reality. I mean, in this example, the internet does have a scary amount of information about us, which can be misused. It’s just unlikely that my husband will be the one to misuse it.

My experiences with other people have not been overwhelmingly positive. Thanks to my social awkwardness, misleading body language, and emotional instability, I have the distinction of turning lots of people off. I look angry when I’m not. I say the wrong thing, or neglect to say the right one. As a child, I was a magnet for bullying from peers and psychological abuse from adults who didn’t like me. Sometimes the peers and the adults collaborated.

So when someone passes me in the hall at my son’s school and I think they are giving me strange, hostile looks – how much of that is real, how much is me misinterpreting their facial expression, and how much is mild paranoia? It’s tough to say.

I crave friendship, human connection. I want to believe the best of people. But over and over, they hurt and disappoint me. That is not conducive to trust.

There are a few awesome people in my life who get me, who have stuck with me through thick and thin. They are the reason I’m not homeless or continually in and out of mental hospitals. They are a very small and vital minority.

I guess I’ll stop there, since it’s a semi-positive note. I don’t want to give too much away, in case someone from the government is reading.

(Just kidding! Or am I? *cue suspenseful music*)

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.

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.

My autism is not my son’s autism. Or is it?

When I was in college, I became friends with a fellow student who was diagnosed with Asperger’s Syndrome. I started reading about Asperger’s and was struck by how much it sounded like …. me. I’d been searching for years, my whole life really, for some kind of explanation as to why I felt so different from everyone around me, had so much trouble making friends, and was always offending people without understanding what I’d done wrong – and here was the first explanation that really seemed to fit. It also fit with the sensory challenges I’d had all my life, with my intense obsessions, my physical awkwardness and clumsiness, my need for routine, and the various self-soothing behaviors that I now know are forms of “stimming.”

I told my parents and they said “No way.” Then they read some books about Asperger’s, called me back and said, “Never mind, you definitely have it.” They consulted my old psychiatrist, who said something along the lines of “Oh, that explains a lot!” And so I embraced the notion that I was indeed on the spectrum.

Until I got a job working with autistic adults.

These adults were at the other end of the spectrum from me, to the extent that the spectrum has “ends.” (I think of it more as a scatter plot.) All the scariest-sounding behaviors people think of when they think autism, these folks displayed. They needed 24/7 supervision and maximum support. I liked them; I liked working with them. But it put my own challenges in perspective.

And then the DSM V came along and Asperger’s was no more. I continued to think of myself as having some autistic traits, but not really actual autism. I didn’t dare lay claim to the same label that, for my clients, was so encompassing, so disabling. In some ways, I related to them and felt that I understood them. At the same time, there was plenty that I didn’t understand; and my own great privilege in having a husband, a job, and the ability to more or less communicate my thoughts, was very very evident to me.

Then I had a baby. And that baby had all sorts of medical problems and delays. And then my baby grew into a little boy and was diagnosed with autism.

Around that same time, my therapist suggested that I’m also on the spectrum, and I had to confront, again, from a new perspective, just what exactly that means.

Only time will tell the level of support that my son needs long-term, but I know this much: he has challenges that I never had as a child. I was not delayed in speech or self-help skills. I didn’t leave buildings by myself, bolt in front of cars or wander into bodies of water. I was sufficiently aware of my body’s boundaries not to injure myself and others on a regular basis. I didn’t lose skills, become so anxious I’d stop eating or drinking for days, or have insomnia and GI problems that required medical management. On the other hand, my son already at the age of 3 has more language than my adult clients had, and many other skills are incipient or emerging.

Some people, often parents of individuals with severe autism (i.e. those that need maximum support), feel that we need different names for the mild and severe ends of the spectrum. I completely understand where they’re coming from; I feel the same way at times. The problem is all the people, like my son, who are somewhere in between those ends. Not only are they in between the extremes, but they are all over the map in that in-between area. That’s why I think of it more as a scatter plot than a spectrum. And if that’s the case, if there are points all over the map, then where do you draw the dividing line?

I do believe that autism is an umbrella term. There are autisms. Similar behavioral profiles with various etiologies and various degrees of disability. Genetic causes (including some known chromosomal anomalies), environmental causes, combinations of the two. Comorbidity is characteristic of autism, which adds further variation.

Rett Syndrome used to be grouped together with autism spectrum disorders; now it’s understood to be a distinct disorder. That may very well happen with other developmental disabilities that are now grouped under “autism.” But until it does, until we can scientifically sort this stuff out, it seems better that instead of fighting with each other, we use our commonalities as a starting point and try to learn from the huge variety of experiences on what is currently the spectrum.

That goes for both parents and autistic individuals. Autistic adults who need only some minor accommodations to live independently, and who want to dispute that autism is a disability in any but a socially constructed sense, need to pay attention to those who are undeniably disabled by their autism. (None of that “It’s not the autism that’s disabling, it’s the comorbidities.” That’s a cop-out.) And parents of nonverbal autistics need to listen to those at various points on the scatter plot who are able to communicate verbally (not necessarily vocally!), and have their assumptions about their child’s inner life continually challenged. (No, I’m not saying that inside every autistic person is a hidden genius. But there are parts of every person that are unknown to their parents and caregivers. Profoundly disabled people are no exception to that.) Most of us, whether we’re autistic or parents of autistics, are hurting, which makes it hard to be open to others. Even so, let’s try to listen to one another’s experience without discounting it.

It’s OK to make distinctions between severity of symptoms and levels of support needed, as long as we don’t use those distinctions to set up opposing camps. Lines can divide, but they can also connect and become beautifully complex shapes.

‘Atypical’ looks pretty typical

Netflix Instant is basically my cable TV, and they emailed me a trailer for their show that’s being added next week, “Atypical.” It has an autistic main character, which immediately gets my interest because I have an autistic child and I’m working on accepting that I’m autistic (which I’ve sort of known since college but then I was in denial but then my therapist told me for the second time that she thinks I am and then my son got diagnosed, it’s a long story) as well as crazy (which I’ve accepted for years).

So anyway, I watched the trailer. I’m not excited.

Is it just me, or is every single autism story-line on TV exactly the same? Let’s see …

White male? Check.

Needs minimal supports? Check.

Played by non-autistic actor? Check.

Parents having trouble coping? Check.

Show has compulsive need to educate audience about stereotypical traits of autism? Check.

Seriously, folks. IT’S BORING.

Show me a female character who’s autistic. Show me an autistic character from a racial or ethnic minority. Show me an autistic character being raised by a single mom working low wage jobs, or a mom with a history of mental illness (which is statistically common since there’s a genetic link), or for that matter, a mom who’s single and working low wage jobs because she has a history of mental illness. Show me an autistic character who has comorbid conditions – epilepsy, OCD, intellectual disability, Tourette Syndrome, a vision impairment, a hearing impairment, impaired mobility, selective mutism, anything. Show me an autistic character who’s gay or bisexual or asexual or transgender or gender nonconforming. Show me an autistic character who challenges functioning labels. Show me a plot that isn’t all about the character’s social awkwardness.

Somebody needs to do for autism what Margarita with a Straw and Speechless have begun to do, in different ways, for cerebral palsy. It’s not about political correctness; it’s about reflecting reality.

 

Why Johnny Doesn’t Flap: a problematic parody

I came across this book in the children’s section of the library last week. It’s called “Why Johnny Doesn’t Flap: NT is OK!” The authors, Clay and Gail Morton, have a son with autism and are self-described members of the neurodiversity movement.

My first reaction to this book was delight. It’s a pretty clever parody of books that attempt to get neurotypical/abled children to be accepting of those who are different (a worthwhile goal but usually condescending in its execution). It’s refreshing and funny. It takes the point of view of the autistic child, a welcome perspective shift that needs to happen a lot more. Here are a couple snippets so you get the idea:

“Johnny has problems with communication. He will say that a math test was ‘a piece of cake’ when he really means that it was easy.”

“Johnny watches the same television shows that I do, but he never recites the opening credits word for word. In fact, I’m not even sure he has them memorized. He sure picks funny things to focus on, but that’s OK.”

There is also an entertaining “Note for Parents” at the end, which informs the reader that “According to the Centers for Disease Control and Prevention, as many as 67 in 68 children may be neurotypical.”

Despite my giggling, something niggled at me. I wondered if it would be possible to write a parody that similarly shifted perspective, but took the point of view of an individual who (for example) uses an AAC device to communicate and needs assistance to use the bathroom. I got particularly stuck on this line, when the narrator laments his friend’s lack of interest in hydraulic forklifts:

“He might never be a real expert on anything, but he’s a good person, so that’s OK.”

I thought a lot about why this line bothered me and finally determined that it’s because it attempts to subvert the ableist paradigm while still accepting it. There’s an implication that the autistic character’s value is shown by his expertise in a technical subject. Intelligence justifies his divergent neurology. Where does that leave autistic individuals who are intellectually disabled?

There are definitely connections between various forms of neurodivergence and certain strains of intelligence and creativity. This is part of the beauty of neurodiversity – of the wonderfully intricate, fragile human brain in all its variation. At the same time, these connections do not appear in every individual. Not every person with schizophrenia is a math genius. Not every person with autism is a programmer. Not every person with bipolar disorder is an artist.

The individuals who have divergent neurology without associated gifts are part of the pattern in the human race that produces those gifts, produces science, poetry, etc. But that is not the substance of their worth as human beings. For that matter, it’s not the substance of worth even for people who do have those gifts. It took me a while to learn this, because for a long time I thought that my literary abilities justified my mental illness, that my value as a person depended on how smart or gifted I was to balance out my impairment. Once I realized that that wasn’t true – that I have as much value as the Nobel Prize winning novelist, and also as much value as the homeless man who recites his poems in coffee shops, and as much value as the nonverbal intellectually disabled woman who’s never written anything at all, because each of them has the same damn value – I was able to enjoy writing for the first time in years.

But back to the book. I was curious what exactly the authors’ take on neurodiversity was, so I googled and found this interview , in which they are quoted as saying: “Why do people with high-functioning autism have a disorder while non-autistic people are ‘normal?'”

Note the deliberate exclusion of “low-functioning” autistic individuals from arguable “normalcy”.

In my opinion, this is the major issue that the neurodiversity movement needs to tackle right now. There are advocates who say “The neurodiversity paradigm is for everyone, no matter how affected and impaired; it’s for those on disability benefits, it’s for those with aides, it’s for those who communicate by nonverbal means”; and there are others like Clay and Gail Morton who say, “Neurodiversity means that mildly affected individuals should be fully accepted because they don’t really have a disorder.” Those are very, very, VERY different stances.

I have major problems with the second approach. It’s actually deeply ableist (I explained why in this post). It’s exclusionary. It’s also, I think, a teensy bit delusional. (If you really can’t figure out what you have in common with those “low functioning” autistic people, then maybe stop describing yourself as autistic?)

A neurodiversity movement that excludes those who are most impaired by their neurology is just another form of elitist garbage, and I don’t have time for that.

The neurodiversity movement that I embrace, that I want to be reshaped by, that I want to tell others about, is expressed by autistic activists like Amy Sequenzia (who is nonspeaking) and Lydia Brown. Instead of seeking inclusion as neurodivergent people within the dominant, able-bodied, neurotypical paradigm, they simply reject it. They refuse to be defined by it. Anything less than that, no matter how clever or well intentioned it may be, falls short.