Open letter to the Lancet Commission on the future of care and clinical research in autism — Neurodivergent Rebel

Up until very recently, autistics have been excluded from the field of autism research apart from being subjects. Research by, and input from autistics has largely been ignored, and the interpretation of research data has been largely in the hands of non-autistic researchers. Gradually, ever so slowly, there’s the beginning of the realisation that neurodiversity is not a pathology, but part of the natural diversity of the human species. And in this respect it’s pleasing to see the Lancet Commission on the future of care and clinical research in autism is recognising that autistics should be collaborators instead of just subjects.

However the Global Autistic Task Force on Autism Research (a committee comprising autistic advocates, researchers and representatives of organisations by and for autistic people) has identified areas where there are shortcomings leaving autistics marginalised once more. I thank Lyric for bringing this to my attention, and I urge everyone to consider carefully the concerns expressed by the task force. I will do my bit by letting the Lancet commission know my views.

I STRONGLY URGE others to publish, share and cosign the original message below as I have done, as well as send a message to Lancet. We wish to address the Lancet Commission on the future of care and clinical research in autism on behalf of the Global Autistic Task Force on Autism Research, a committee comprising autistic…

Open letter to the Lancet Commission on the future of care and clinical research in autism — Neurodivergent Rebel

WHAT IS AUTISM?

In yesterday’s post I quoted from and linked to an article that argues that the pathology paradigm is a cultural value judgment and not a objective scientific conclusion. So if autism is not a disorder, what is it? Most online scientific and medical literature still use the pathology paradigm, as do most sources within the autism community^(a) and so are of little help when looking at what autism really is.

To gather a more accurate description one needs to look at the literature from the autistic community^(b). The “problem” with following this course of action is that most descriptions are based on personal experience and are therefore subjective in nature rather than being objective in a scientific vein.

^(a)Autism community: allies of autistic people; caregivers of autistic people; extended family of autistic people; professionals who work with autistic people; anyone who thinks they know anything about autism.
^(b)Autistic community: autistic people.

And here’s why it’s a problem: The experience of every autistic is different. The picture I paint to describe what autism is for me will be different from the picture painted by another autistic about their experience. Some of my experiences might event contradict those of another autistic. Many non-autistic people have an issue with this. They see inconsistencies, discrepancies that they interpret as “nonsense”, “bullshit”, “you’re making it all up”. And we’re the ones who are supposed to have rigid forms of thinking??

Comprehensive descriptions that include autism in all its variations and follow the neurodiversity paradigm are few and far between, but I find the following from the NEUROCOSMOPOLITANISM blog one of the better descriptions of what autism is.

Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.

According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.

What Is Autism? – NEUROCOSMOPOLITANISM, March 1, 2014

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…

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.

You make doomsday predictions about your child’s future

Point 5 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 already wrote a post about this. (Click Here) There’s also a great post from Luna Rose at the fantastic Autistic Dreams blog on this subject (Click Here)

But the gist is, parents often make grand doomsday predictions about their young autistic children. “My child will never drive a car. They will never speak. They will never get a job, or fall in love, or live independently.” And they say this about their three-year-old.

I’m sorry, who has the crystal ball? How can you possibly make this prediction about your child? Autistic children, like all children, grow and develop throughout their lives. There’s no telling what they will or will not do. My parents were told, by multiple school counselors, and therapists and social workers, that I would never graduate from high school. And yet here I am, an honors student in 12th grade currently applying to colleges. My heart hurts for your child when you limit the potential of your child.

You parrot myths about autism

Point 4 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 have seen it written on these autism parenting blogs things like “autistic people lack empathy” or “autistic people have no imagination” or “autistic people have no theory of mind” and even “autistic people don’t feel emotions.”

And it’s frustrating to know they think this about their child and other autistics because they’re all totally wrong. Any autistic person knows this. Many autistic people could tell you this, and we’ve been saying that these myths are wrong for decades now, and yet nobody will listen. The ironic part is, though, that the opposite of these myths is actually true. Autistic people feel emotions and empathy as being more intense. Autistic people I’ve found to be typically more imaginative, and outside the box thinkers. And, no, autistic people do not lack theory of mind, I assure you we are aware that other people have minds that are distinct from our own.

The difference is in expression. We express emotions and empathy in different ways, but this doesn’t mean we don’t have them. Nor does different mean broken. Autistic kids may not have tea parties with their stuffed animals, but this doesn’t mean they have no imagination. Lining up toy cars may seem mindless to you, but it’s not a display of a lack of imagination. It’s different. But different does not mean wrong.