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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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.

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.

Pass the acceptance, please

Apparently this Saturday is the beginning of Autism Awareness Month. (It’s also my local library’s spring book sale, but that’s probably not as exciting to you all as it is to me.) Or, better yet, Autism Acceptance Month. Because people are already aware of autism, aren’t they?

People are aware of autism as something so horrible that it’s better to let their child die of measles or be paralyzed by polio than risk the (scientifically dis-proven) vaccine-induced onset of autism. They’re aware of autism as something so horrible that it excuses a parent killing her own child. Does this kind of “awareness” help autistic people function in society, form meaningful relationships, find employment, live rewarding lives?

People are also apparently aware of autism as something that has a particular “look” – hence the often made comments “You (your child) doesn’t look autistic!” (I guess autistic people are supposed to be green??)

Forget about awareness. All it does, as far as I can tell, is make people think they know something when they actually don’t.

You know what I would like? I would like to be able to take my almost-three-year old son anywhere in public and not be glared at, told I shouldn’t be there, or hear muttered unkind comments. I would like to be able to take him to story/craft time at the library and not see him excluded by a particular parent volunteer because she doesn’t understand his behavior.

((Do you know how much it hurts, after a lifetime of being excluded by neurotypical people, to see your son (who is totally sweet and awesome) being excluded before he’s even three years old? It’s easy to say to someone who’s been rejected and excluded by other people, “Well, you’re such a cool person, that’s their loss.” It’s even true, but it’s incomplete. Because when you reject and exclude me, that’s my loss, too. When you reject and exclude my son, that’s his loss. That’s our pain and our anger and our loneliness, every freaking time.))

I shouldn’t have to put a big sign on my kid that says “I have special needs! Be nice!” in order for people to treat him with kindness and respect. Maybe I’m being overly idealistic here, but it would be cool if people could treat him that way just because he’s, you know, a PERSON.

What I want for him is acceptance. Acceptance, understanding, and support. I want people to see his awesome personality AND his differences, his challenges AND his gifts, not one or the other as if they’re incompatible. Because it’s all rolled up in the same human being.

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.

The neurodiversity movement: it’s not what you think

Neurodiversity is short for “neurological diversity.” Basically, it’s the undeniable reality that there are variations in the way that human brains work. These variations can have a strong genetic component, as in the case of schizophrenia, or they can be the result of a traumatic brain injury, stroke, or other event. Some, like Rett Syndrome, result from a de novo genetic mutation.

You will note that all the conditions I just mentioned tend to be disabling – indeed, can be very very disabling. This leads me to the neurodiversity movement and what it does and doesn’t say.

I have, personally, never seen neurodiversity proponents argue that neurological variations don’t bring significant challenges, that they never interfere with activities of daily living, or that all treatment should be eschewed. I consider myself a proponent of neurodiversity, and I would never argue any of those things. These arguments generally show up as straw men being machine-gunned down by neurotypical people who are against the neurodiversity movement. Certainly, any neurodiversity movement that ignores severely affected individuals in favor of quirky geniuses is not worthy of the name; but this appears to me to be the image painted of the movement by outsiders, rather than its reality.

Too often, the positions attributed to neurodiversity advocates by critics betray the critics’ own ableism. For instance, the notion that folks with [the now defunct diagnosis of] Asperger’s Syndrome may be able to justify their social impairments (and thus existence) by being gifted with computers is often presented as the essence of neurodiversity. The critic then moves on to say that there are many autistic people who self-injure and need assistance with toileting,  and who aren’t gifted with computers to make up for that, therefore neurodiversity is bunk. Q.E.D.

That is ableism at its finest.

If you don’t see why it’s ableist, let me break it down. This argument makes the following assumptions:

  • Only people who are mildly impaired, or not at all impaired, by their neurological differences are worthwhile human beings.
  • Any impairment MUST be compensated for by some sort of extraordinary talent, in order for the impaired individual to be a worthwhile human being.
  • It is impossible to accept and embrace neurological differences that interfere with speech or with toileting and other activities of daily living, or which cause meltdowns, rages, self-injury, delusions, and other behaviors that may cause harm or make others uncomfortable.
  • The neurodiversity movement can’t possibly represent the people just described, because their form of neurological difference is clearly unacceptable.

Accepting a reality does not mean sanitizing or romanticizing it. In fact, if you have to sanitize something in order to accept it, then you’re not really accepting it.

I have chronic, recurrent, severe depression. I will be the first to tell you that depression sucks. Depression hurts and can kill. I don’t take psych meds for fun. On the other hand, I used to think that there was nothing good about depression, that it was basically pure evil; ironically, this intensified my sense of doom and self-hatred. I was terrified of the next depressive episode. (Hypomania, though it can be annoying, is much easier to make a case for than depression. Unfortunately for me, I only get hypomanic maybe once a year?)

Now, having lived with this condition for well over a decade, I have more or less accepted that it’s here to stay; that I will get depressed again, and that I will recover; that there will be days I can’t get out of bed, days I can’t talk on the phone, days I can’t see the point of living; that meds help, but don’t eradicate the symptoms; and that it is ultimately impossible to disentangle the depressive aspect of my brain from the rest of it. I like my brain, overall, and it’s quite probable that if I didn’t have a mood disorder, I would be a very different person. I don’t know what the trade-offs would be, and I’m OK with not knowing.

The human brain and mind is very complex. It affects thought, perception, interpretation of reality, sense, emotion, the things that most feel like one’s “self”. This is why people are particularly afraid of mental or neurological differences and disorders – because it seems to strike at the actual self – and also why many neurodivergent folks cannot separate out the things that they like about themselves from their actual disorder. It’s all deeply intertwined. One can want to mitigate certain symptoms without wanting to completely rewire one’s brain and be a different person. One can acknowledge the real challenges – even the accompanying suffering – of a neurological difference without demonizing one’s neurology. And by the way, “disorder” and “disability” are not dirty words on one side of the room, with “neurodiversity” and “rainbows” on the other.

Critics say that the neurodiversity movement wants you to think of Asperger’s Syndrome or mild autism as a positive variation instead of a disorder. Actually, the neurodiversity movement is asking something much more radical – so radical that these critics apparently can’t process it. It’s asking for a world in which AAC is just as valid as verbal speech; in which one can need toileting assistance and still have a right to privacy; in which one can have screaming self-injuring meltdowns and still have valid opinions; in which a schizophrenic homeless person can accept or refuse medication and be housed either way; in which it’s socially acceptable to talk to your voices in a coffee shop; in which it’s socially acceptable to rock and flap in class; in which neurotypical people’s need for you to appear “normal” doesn’t constantly take precedence over everything else; in which functioning without help is not the price of human dignity.

 

Further reading:

A typical critique: https://psmag.com/im-high-functioning-autistic-here-s-what-the-neurodiversity-movement-gets-wrong-b07bca1e2c86#.gjbr2qvwc  (The author describes herself as a “high functioning autistic” but clearly thinks that “low functioning autistics” and people with mental illnesses like schizophrenia are just soooo messed up, and she will tell you why, while attributing her own stigmatizing attitudes to the neurodiversity movement she’s criticizing.)

Refreshing rebuttal to the article linked above: https://autisticacademic.com/2016/05/26/im-a-pro-neurodiversity-advocate-heres-what-our-critics-never-get-right-but-dont-bother-to-correct-either/

A couple pro-neurodiversity parental perspectives: http://www.thinkingautismguide.com/2013/01/why-did-amy-sf-lutz-attack.html and https://adiaryofamom.com/2014/09/04/what-neurodiversity-isnt/