Autism and the Pathology Paradigm

I was late in being diagnosed as being on the autism spectrum – I was 60 years old at the time. At first I tried to prove that I was not autistic, but when that failed I reluctantly accepted that I had a disorder. It took quite a few years to realise that autism is no more a disorder than diversity in sexual orientation or gender identity are.

The following paragraphs from Autism and the Pathology Paradigm summarise my current understanding. You can read the full article by clicking the link in the citation at the foot of the quoted text below.

The choice to frame the minds, bodies, and lives of autistic people (or any other neurological minority group) in terms of pathology does not represent an inevitable and objective scientific conclusion, but is merely a cultural value judgment. Similar pathologizing frameworks have been used time and again to lend an aura of scientific legitimacy to all manner of other bigotry, and to the oppression of women, indigenous peoples, people of color, and queer people, among others. The framing of autism and other minority neurological configurations as disorders or medical conditions begins to lose its aura of scientific authority and “objectivity” when viewed in this historical context – when one remembers, for instance, that homosexuality was classified as a mental disorder in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) well into the 1970s; or that in the Southern United States, for some years prior to the American Civil War, the desire of slaves to escape from slavery was diagnosed by some white Southern physicians as a medical “disorder” called drapetomania.

At this time, sadly, the pathologization of autistic minds, bodies, and lives still has not been widely recognized – especially not within the academic and professional mainstream – as being yet another manifestation of this all-too-familiar form of institutionalized oppression and othering. The academic and professional discourse on autism, and the miseducation on autism given to each new generation of professionals, remain uncritically mired in the assumptions of the pathology paradigm. And since bad assumptions and unexamined prejudices inevitably become self-reinforcing when mistaken for facts, this entrenchment in the pathology paradigm has kept autism-related theory, praxis, and education stuck in a self-perpetuating cycle of ignorance and bigotry.

Autism and the Pathology Paradigm – NEUROCOSMOPOLITANISM June 23, 2016

They Were Wrong — Speaking of Autism…

Too often, those who are neurodivergent are written off and denied the opportunity to shine. It takes an exceptional amount of determination and good fortune for most autists to break through the barriers that society, in its ignorance, places in front of them. Success stories are rare, not because it’s an innate characteristic of autism but because society has decided to write off autists as failures, rejects, and broken, even before formal education commences. So I rejoice when a kindred spirit is able to demonstrate how wrong the system is. Here is the success story of one autist who, with just the right amount of determination, support and happenstance, has proven that the system and society are indeed wrong.

Congratulations Quincy!!

Well, folks, it’s official. I am a high school graduate! Well, technically I’ve been “graduated” since May, but the school held the actual ceremony this week. Despite the delay, I walked across the stage and got my diploma last Thursday on the school’s football field. I think that for everyone a high school graduation is […]

They Were Wrong — Speaking of Autism…

Ways society gaslights and stonewalls autistic people #4

Taken from 50 Ways Society Gaslights and Stonewalls Autistic People. Visit Neuroclastic if you prefer to see all 50 ways in one bite. Otherwise, expect to see one more way in which we are gaslighted each day over a period of seven weeks.

Autistic people, adults and children, are infantilized, gaslighted, and manipulated regularly by society– individuals and institutions.

Gaslighting is a form of psychological manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the victim and delegitimize the victim’s belief.

Wikipedia

Note: Some of these may overlap, and some may not fit squarely within the definition of gaslighting; however, all contribute to the way in which society functions like a narcissistic parent with regards to how autistic people are perceived and treated.

4. ABA “therapy”

When ABA therapists claim that ABA therapy for 40 hours is not exhausting for small children because it’s “just play,” when social play can be beyond-exhausting over extended periods of time for autistic kids.

Neuroclastic

Just because Autistic kids often don’t play in a way non-autistic kids do doesn’t mean they’re not playing. And by being forced to “play’ in a way non-autistic kids do – especially social play – it is no longer play. It becomes hard work and eventually beyond endurance. Such treatment of a typical child would be considered abuse, but somehow it’s okay to subject autistic kids to this sort of treatment.

Ways society gaslights and stonewalls autistic people #3

Taken from 50 Ways Society Gaslights and Stonewalls Autistic People. Visit Neuroclastic if you prefer to see all 50 ways in one bite. Otherwise, expect to see one more way in which we are gaslighted each day over a period of seven weeks.

Autistic people, adults and children, are infantilized, gaslighted, and manipulated regularly by society– individuals and institutions.

Gaslighting is a form of psychological manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the victim and delegitimize the victim’s belief.

Wikipedia

Note: Some of these may overlap, and some may not fit squarely within the definition of gaslighting; however, all contribute to the way in which society functions like a narcissistic parent with regards to how autistic people are perceived and treated.

3. Empathy

When they claim to have empathy and that we don’t, but then only measure empathy in NT ways like eye contact or understanding NT behavior.

Neuroclastic

Ways society gaslights and stonewalls autistic people #2

Taken from 50 Ways Society Gaslights and Stonewalls Autistic People. Visit Neuroclastic if you prefer to see all 50 ways in one bite. Otherwise, expect to see one more way in which we are gaslighted each day over a period of seven weeks.

Autistic people, adults and children, are infantilized, gaslighted, and manipulated regularly by society– individuals and institutions.

Gaslighting is a form of psychological manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the victim and delegitimize the victim’s belief.

Wikipedia

Note: Some of these may overlap, and some may not fit squarely within the definition of gaslighting; however, all contribute to the way in which society functions like a narcissistic parent with regards to how autistic people are perceived and treated.

2. Late blooming

Not acknowledging that many of us grew up in environments that weren’t conducive to fostering our talents ended up as late bloomers, then assuming we’re Né’er-do-wells or we’re unmotivated or unambitious. We just haven’t bloomed yet, and it’s a profound difference… but when we do bloom, look out.

Ways society gaslights and stonewalls autistic people #1

Taken from 50 Ways Society Gaslights and Stonewalls Autistic People. Visit Neuroclastic if you prefer to see all 50 ways in one bite. Otherwise, expect to see one more way in which we are gaslighted each day over a period of seven weeks.

Autistic people, adults and children, are infantilized, gaslighted, and manipulated regularly by society– individuals and institutions.

Gaslighting is a form of psychological manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the victim and delegitimize the victim’s belief.

Wikipedia

Note: Some of these may overlap, and some may not fit squarely within the definition of gaslighting; however, all contribute to the way in which society functions like a narcissistic parent with regards to how autistic people are perceived and treated.

1. Sensory differences

Telling us that our sensory differences are “no big deal” and that we just need to “be resilient” and learn to deal with it. They assume their brains are the same as ours and assume we can habituate when we can’t, so instead force us to be in awful environments to try to “habituate us” to the stimulus. Which is just further traumatizing us. Thinking they get to decide what is loud, bright, painful, or tastes funny.

Neuroclastic

You share intimate and private details about your child…

Point 9 from Sometimes my Heart Hurts for your Child

Over on Speaking of Autism… Quincy has written a heartfelt piece aimed primarily at the autism community, but it is also relevant to the wider neurotypical (non-autistic) community.

The article is quite long (approximately 9 minutes reading time), and each of the points Quincy makes shows how much the autism community fails to understand the autistic community. For this reason, I’m re-posting each point as a separate article here, because each point is important.

Before I start, I feel I need to explain the difference between the “autism community” and the “autistic community” The autistic community consists of people who are autistic, whereas the autism community consists mainly people who are directly or indirectly involved with autistic people (typically family members and those involved in the “treatment” of autism), but are not typically autistic themselves.

Each of Quincy’s points illustrates just how far the autism community and the wider community has to go to meet the autistic community even part way.

You share intimate and private details about your child without obtaining their consent.

There has been a trend by which people detail very private and personal information about their autistic children publicly online. They film meltdowns and post the videos. They post their child’s toileting habits and potty charts. They share all of their diagnoses and medical histories. All without any semblance of an OK from their child. And it needs to stop.

Can’t we have some semblance of empathy? Would you want someone to post such details about you on the internet, open for everyone from friends to future dates to future employers to see? No? Then why are you posting this about your autistic kids? Some will defend this practice, saying it’s for “awareness,” and others unapologetically do it to try to gain sympathy for how “hard” it is to raise an autistic child. I don’t believe either of those are anywhere close to valid reasons to expose your child like that, but either way, intent does not erase harm.

You describe your child as a mystery…

Point 8 from Sometimes my Heart Hurts for your Child

Over on Speaking of Autism… Quincy has written a heartfelt piece aimed primarily at the autism community, but it is also relevant to the wider neurotypical (non-autistic) community.

The article is quite long (approximately 9 minutes reading time), and each of the points Quincy makes shows how much the autism community fails to understand the autistic community. For this reason, I’m re-posting each point as a separate article here, because each point is important.

Before I start, I feel I need to explain the difference between the “autism community” and the “autistic community” The autistic community consists of people who are autistic, whereas the autism community consists mainly people who are directly or indirectly involved with autistic people (typically family members and those involved in the “treatment” of autism), but are not typically autistic themselves.

Each of Quincy’s points illustrates just how far the autism community and the wider community has to go to meet the autistic community even part way.

You describe your child as a mystery and long to know what their world is like, when I know exactly what their world is like.

So many describe autistic people as mysteries. Parents say they long to know what’s going on inside their autistic child’s head, that they could understand.

Well, I have good news: there is a way you can see your child’s perspective! You ask other autistic people! It seems so obvious, yet so many neglect this. Despite the fact that the autism spectrum is broad, I am convinced that there really isn’t a fundamental difference between different autistic people.

I can relate to every autistic person I have ever met on an autistic level, even the ones who superficially “aren’t like” me. I find my autistic experiences bring the same as their autistic experiences, and I can use the fact that I’m also autistic to help you understand your child. Now, many parents do listen to other autistics, and to all those that do a sincere thank you.

Yet so many parents don’t want to listen to autistic people. They may read something written by an autistic, momentarily think “wow, that was profound, I’m glad I read that,” and then move on prioritizing non-autistic voices on autism over those who literally live autism. Or, at worst, they get belligerent. “Not like my child” is the commonly repeated phrase. But the thing is, we are like your child.

That doesn’t mean everyone is a carbon copy clone of your kid, or that we have all the same struggles, or all the same co-occurring conditions, or are equally as disabled. But we are both autistic. And like I said, there’s not a fundamental difference between other people’s autism.

We do understand your child from firsthand experience. Plus, many of us literally were just like your child. The non-speaking kid who has a meltdown every time he hears a hairdryer and needs prompting and constant aid to do the basic things? For many of us autistic adults, we were exactly like that at that age. We lived exactly that. So give us the benefit of the doubt and let other autistic people help you understand your autistic child.

You don’t recognise the sensory pain your child is in

Point 7 from Sometimes my Heart Hurts for your Child

Over on Speaking of Autism… Quincy has written a heartfelt piece aimed primarily at the autism community, but it is also relevant to the wider neurotypical (non-autistic) community.

The article is quite long (approximately 9 minutes reading time), and each of the points Quincy makes shows how much the autism community fails to understand the autistic community. For this reason, I’m re-posting each point as a separate article here, because each point is important.

Before I start, I feel I need to explain the difference between the “autism community” and the “autistic community” The autistic community consists of people who are autistic, whereas the autism community consists mainly people who are directly or indirectly involved with autistic people (typically family members and those involved in the “treatment” of autism), but are not typically autistic themselves.

Each of Quincy’s points illustrates just how far the autism community and the wider community has to go to meet the autistic community even part way.

I see the sensory pain your child is in, but you don’t recognize it

So often I see kids who are having a hard time making it day to day, and I can almost guarantee the issue is their sensory input is not regulated. Their schedules and environments are not suiting their neurologies. The problem is so obvious to me, and yet the parents are completely oblivious to it.

They say “little Johnny has a meltdown every morning while I put his clothes on him. It’s so haaaaaaaard being an autism parent,” completely neglecting the fact that maybe those clothes you’re making him wear feel like cactus spikes pressing against his skin? Or that you touching him is causing overload? Or that that fluorescent light in his room literally hurts to look at?

You don’t know how to listen

Point 6 from Sometimes my Heart Hurts for your Child

Over on Speaking of Autism… Quincy has written a heartfelt piece aimed primarily at the autism community, but it is also relevant to the wider neurotypical (non-autistic) community.

The article is quite long (approximately 9 minutes reading time), and each of the points Quincy makes shows how much the autism community fails to understand the autistic community. For this reason, I’m re-posting each point as a separate article here, because each point is important.

Before I start, I feel I need to explain the difference between the “autism community” and the “autistic community” The autistic community consists of people who are autistic, whereas the autism community consists mainly people who are directly or indirectly involved with autistic people (typically family members and those involved in the “treatment” of autism), but are not typically autistic themselves.

Each of Quincy’s points illustrates just how far the autism community and the wider community has to go to meet the autistic community even part way.

I see your child working so desperately against their uncontrollable body to communicate with you but you don’t know how to listen.

This goes back to taking the autistic perspective. Not all communication comes in neurotypical form. Behavior is communication. Listen to what your child is saying beyond just words. Consult autistic adults and bloggers if you need help understanding your child. Because the chances are we can help you speak autistic.