A Bed of Roses Still Has Thorns – On #Autism and Cures

A Bed of Roses Still Has Thorns – On #Autism and Cures

As an autistic woman, would I want to be cured?

It’s a valid question, and one that I believe is worth exploring in depth because its simplicity hides a host of unspoken assumptions, assumptions that differ depending on who you ask.

What Is Autism?

Autism is not just a medical diagnosis based on a set of clinical observations, even though that’s exactly how it’s defined in manuals such as DSM and ICD. Those are just the outward tell-tale signs of a brain that works a bit differently from most.

I don’t pretend to understand how my brain works or how an autistic brain is different from a non-autistic one: I don’t know what exactly makes somebody autistic. I do know I can relate my experiences very strongly to those of many of the autistic people I know personally. I know that almost all my friends are autistic and that I have more trouble establishing close relationships with non-autistics.

One of the reasons that an autistic culture has arisen, especially since the growth of the internet made long-distance and alternative–not face to face and largely written–communication so much easier, cheaper and faster, is that so many of us relate to each other on levels that we can’t reach with non-autistics: this is a consequence of the double-empathy problem where each group has difficulty relating to the other.

Where you have a culture, you have an identity associated with it. So you often find autistic people speak about autism as an identity–a cultural identity–much more than as a condition or diagnosis. This phenomenon of autism as cultural identity is why so many of us feel a strong preference for referring to ourselves as autistic and not “people with autism”.

Neurodiversity

The concept of neurodiversity is strongly associated with, although by definition not restricted to, autism. In simple terms it is the idea that autism, ADHD and other neurological differences are all part of the normal variation of human brains. It’s the idea that these are differences, not faults.

That’s not to say that we don’t recognise the ways in which our differences can present obstacles in daily life. Some of these can be disabling, especially in a world that is largely shaped by and for the neurotypical majority.

The problem with the medical definition and view of autism is that it’s entirely based on deficits, on aspects that are seen as inferior when compared to the predominant neurotype. It’s like the old saying, “When all you have is a hammer the whole world looks like a nail”: when you always frame neurodivergence as a collection of faults, you only see it as something to be fixed.

Support Needs versus Quality of Life

So we come to one of the key points: many neurodivergent people have non-trivial support needs in their everyday lives. Many of us need assistance in one form or another, whether it’s with communication, mobility, tasks such as washing, dressing or eating.

Many people who don’t require such support would equate that with a poor quality of life but that’s not true. They assume that needing assistance means you lose autonomy, the ability and right to make decisions about things that affect you. The opposite can be true with the right support: it can enable someone to do things that they would otherwise be unable to.

Requiring support, even for basic tasks and activities, does not mean having a poor quality of life. Encountering prejudices and having support restricted or denied, on the other hand, does severely reduce the fulfilment in one’s life. There’s no scale from having a good life at one end to having high support needs at the other: it’s possible to have both.

Cure = Reducing Support, not Needs

This idea that requiring more assistance and support means that one has a worse life–because that’s the assumption made by people who don’t have such needs–is a key motivation behind much of the search for autism cures. There’s certainly money to be made for the corporations and medical professionals offering these treatments too, which is always a consideration.

The problem with such an approach is that it largely ignores the needs of people today, and the cure agenda is pursued instead of investing in support services. It’s a “jam tomorrow” scenario, made worse by the priority being which “jam” they feel will offer the best return on investment and not which one those receiving it might be asking for.

There is a history of research priorities being set without the input of those the studies are focused on, leading to unmet needs and a growing disenchantment with and mistrust of the medical establishment.

When this happens against a backdrop of cuts to social services and increasing barriers to access what remains, it’s no wonder that there’s considerable scepticism among autistics whenever some new prospective cure is announced. Indeed there’s growing anger that our priorities are routinely ignored or overridden.

Cure = Eradication

Some treatments are aimed at reducing or eliminating already-present aspects of autism–things like “improving” our social interactions or our ability to act “normal”. Others, particularly involving genetic manipulation, are intended to prevent autistic traits arising at all.

When we hear talk like this about “curing” autism it comes across as a desire to eliminate us as a people, destroy our culture, remove the core part of our identity. Eradicate that which makes us who we are, and so eradicate us. This is why there’s such strong opposition from autistic people to research into what from our point of view is no different from eugenics or genocide.

Would I Want To be Cured?

After all that, back to the question I started with. For me, being autistic is not something I can separate from how I see myself: it’s an intrinsic part of me, one of the aspects that makes me uniquely me. Without it I would not be me.

I feel at home in autistic culture, among people I can relate to and identify with. My people.

Anything that threatened to break the affinity I feel, that risked severing my feeling of connection to these people, would feel like it threatened my very life. Maybe even worse than that, because I would go on, cut adrift from the tribe that feels like home to me and I would be keenly aware of the loss.

But there are things I struggle with. I sometimes become overwhelmed by emotions and/or sensations and unable to express myself verbally, either in speech or even writing. I misunderstand people–neurotypical people especially–because I expect them to respond the way I or another autistic would. I have sensory processing and executive dysfunction.

Would I like to never again feel overwhelmed and disoriented by complex noise or too-bright lighting? Would I like to be able to remember what I came into a room looking for? Would I like to be able to keep my apartment organised?

These are areas where I want assistance. If there was a way to “fix” them while leaving everything else intact would I be interested? Maybe, but I’d need to be sure the cure wouldn’t have unintended consequences: side-effects.

So there’s my answer: a definite maybe, if it’s not too much trouble and it wouldn’t do anything I didn’t want it to. I’ll take help if it’s going, I might consider limited treatments, but I would never want to not be autistic. I don’t want to be “cured” because although I accept that I’m disabled, I don’t see myself as broken.

Being Disabled – #Autistic December 1/31

Being Disabled – #Autistic December 1/31

A close-up of a UK disability Blue Badge showing the white on blue disabled symbol on its lower left corner

I never imagined when I used to see or hear about disabled people that one day it would include me. I don’t think anybody does: unless you are disabled yourself it’s always something that affects other people. Less fortunate people.

Be honest: that’s how you think of us, isn’t it? You feel glad–lucky–that you’re not disabled. Because that would be awful. Am I right?

That right there: that’s stigma. You feel sorry for us, pity us, hope you never become one of us. You see us as damaged people. You can’t believe it’d ever affect you, that you could ever become disabled yourself.

I know, because I used to feel that way. Disabled people were some other group, over there, not like me. There was a difference, a gulf that could never be crossed: that could never be me.

I had no instant of revelation, no light-bulb moment. The idea that I was disabled myself took time to sink in. I spoke the words long before I accepted the truth and believed them; I denied it to myself. I worked full-time, had my own home: how could I reconcile that with being disabled?

What I felt was internalised ableism: I had become accustomed to equating disability with failure. Really accepting that I was disabled meant confronting my own prejudice, admitting it existed, and then unlearning it.

That journey has been a hard one. It’s more than uncomfortable to admit that you don’t live up to your own moral standards, but faced with a choice between denial and change I realised I had to change if I was ever going to accept myself for who and what I am.

I am disabled: that means there are things I can’t do and situations I can’t handle. It doesn’t mean that I ought to be able to do those things, and it doesn’t mean I’m a failed human being: I’m not. And I accept that.

This is the first post in Autistic December, a daily series about the impact on my life of being autistic.

Perfect storm. #autism – by Sonia Boué (reblog)

Perfect storm. #autism – by Sonia Boué (reblog)

Historically I’ve not often reblogged posts by other writers — in fact it’s probably only about 3 times in all the years. And that’s because I wanted the focus of this blog to be me. But now, with the “rebranding” and relaunch as My Autistic Dance I feel I want to expand what I publish here to include links to other posts that are insightful and illuminating, and principally about autism, such as this one by my dear friend Sonia.

The context for my poem Perfect storm is the research for my Arts Council Funded project – The Museum for Object Research. It isn’t about any one person or conversation, but more about my growing understanding of the ways in which I am disabled – despite being a competent human – by ingrained assumption and the double empathy bind.

Source: Read the whole post on The Other Side here

Listen

Listen

Imagine you couldn’t speak, couldn’t sign to communicate with other people. How could you let them know when you were feeling discomfort or pain? Whether you wanted to go some place, or simply be left alone where you are?

How would you feel when doctors decided you were not competent to make your own decisions about your life? When they took you away from the places and people you were used to? When they denied you access to the tools you use to communicate?

How would you like to be medicated against your will when your distress is interpreted as non-compliance and “bad behavior”? To be punished–hurt and abused–when you are simply acting in a way that is natural for you? To be incarcerated, institutionalized and denied your freedom because somebody believes that not speaking means not thinking?

This has happened to many, many people who are autistic or have other neurological conditions affecting their ability to communicate in conventional ways. It is still happening today. Places like the Judge Rotenberg Center in Massachusetts inflict pain and fear in an attempt to force compliant behavior; instead they cause long-term harm including PTSD.

Sharisa Kochmeister was denied the right of access to her communication devices, deemed not competent and made a ward of Jefferson County, Colorado. She has been removed from her home and family, and they have been prevented from contacting each other except for a very few highly-constrained supervised visits.

What will it take for all of us to live secure in the knowledge that we will not face such arbitrary denial of our rights? That we will not be detained against our will? That we will be presumed competent regardless of our means of communication?

Compassion: An Obituary

Compassion: An Obituary

Dole scrounger. Benefits cheat. These are familiar epithets, catchy soundbites that stick in the memory. Beloved memes of modern day society, and a symptom of the loss of compassion for others. I’m very sorry to tell you that following a long illness compassion has died.

Here in the UK there is still pride when people recall times such as the Blitz. The popular image of people coming together, helping each other. Children evacuated from areas most at risk of bombing being taken in by strangers, being welcomed and cared for. It wasn’t true in all cases, but that’s the image people have when they think about it. That was compassion.

On to the 80’s: I grew up in the North of England during the miners’ strike, near Wigan. I can remember the familiar sight of the towers of winding engines at the pit heads, now long gone with nothing to mark where they once stood. Wigan wasn’t nearly as badly affected as other towns, having other industries besides mining. But for some communities the coal mines were the only significant source of employment. As the strike went on month after month those communities were reduced to poverty: the fight to preserve their way of life ultimately hastening their end. And yet up until the desperate end there was a camaraderie among the strikers, a willingness to share what little they had, compassion for each other.

Still in the 80’s, that was when I first encountered the term “dole scrounger” applied by the lower echelons of the press to those caught up in the mass unemployment that characterised the Thatcher years. It was the era of the yuppie and the movie Wall Street, when capitalism and self-interest became the new gods and a belief took hold that anybody who didn’t profit did so because of moral failings. Those unable to work, or unable to find work at a time with millions unemployed were portrayed as burdens on society, leaching money from those who were more fortunate.

Selfishness as a virtue dealt a killing blow to compassion, although it would linger on for decades. The final nail in its coffin has been austerity, a set of policies introduced following the global financial crisis. Deflecting blame from those whose greed triggered the collapse, the focus has been on those who are deemed a drain on society’s resources. Those who find themselves at the bottom of the heap, looked down upon and neglected by those higher up on the social scale.

The “dole scrounger” of the 80’s has been replaced by the “benefits cheat” of today: the semi-mythical fraudster who lies and cheats their way to a comfortable life by exploiting the welfare system. The small number of actual examples doesn’t prevent the media from painting a picture of an endemic problem sucking billions from the welfare pot. They cast doubt on the legitimacy of all who claim benefits, building a case on the flimsiest of foundations for tightening the rules, chasing the chimera of a perfect, foolproof system that would prevent 100% of false claims.

It’s all misdirection. Stoke people’s fears that somebody somewhere is getting away with it, and keep their attention away from the fact that so many who are in genuine need are denied assistance. That fear has replaced compassion. Instead of caring and ensuring that nobody goes without sufficient means to live, we are constantly being told that the most important thing is that not a single person gets more than their entitlement.

Increasingly restrictive rules deny the provision of basic services and a subsistence income to those who are most in need. People are dying. But then that saves money too. Is the thought of a handful of families paying for luxuries with benefits money obtained through deception so terrible that it justifies a man starving to death because his benefits were withdrawn? Because that’s the society we live in today. And that’s why I say compassion is dead.

Farewell compassion, you will be sorely missed. Requiescat in pace.

Dedicated to my wonderful, compassionate friend Sonia Boue whose post Eugenics in the UK inspired me to write this.

Poisonous Expectations

Poisonous Expectations

There’s a toxic belief permeating all levels of society: that disabled lives are worth less than able ones. In just the last couple of days there has been a political candidate calling for compulsory abortion of fetuses that test positive for genetic conditions such as cerebral palsy, and a columnist in a national (UK) daily newspaper using the phrase “remedial-level dipshit” to describe children with developmental delays.

I have a daughter. I understand having hopes and dreams of what your child may achieve: that’s only natural. What isn’t natural, or at all healthy, is this cultural obsession with perfection. TV, magazines, newspapers are all full of examples of what is deemed to be “perfect” with public shaming and criticism of those don’t live up to this ideal.

Those with physical or mental disabilities are not spared. Portrayed as objects of pity, a modern-day freak show exhibited so that the able-bodied and those without cognitive differences can feel better about themselves, feel thankful that they are “normal”. And don’t get me started on the patronizing “inspirational” bullshit when a disabled person manages to achieve something that the able take for granted.

There is a high level of disability awareness, for all the good it does. A lot of able people feel uncomfortable around the disabled. It would be nice to think that it stemmed from a sense of guilt over that way they treat us, the way they think about us as lesser people, but I don’t believe that’s the case. I believe it’s because seeing us reminds them that we exist in their “perfect” world, They don’t want to be aware of us; they wish we would just disappear and stop disturbing their comfortable illusions.

The majority of language used in depictions of disability is negative: it’s all about deficits, what we can’t do, how we can’t hope to match the standards set for the able. We don’t need to be told: we’re perfectly aware of the areas where we face limitations and restrictions. The thing is, many of these restrictions in areas such as mobility and communication can be overcome to varying degrees by accommodations.

Yes, it costs a bit more to accommodate people who are outside the statistical normal range of ability. But by failing to provide that assistance the message being sent is that we are not worth it. We don’t matter. We’re not even considered a lot of the time, and when we are it’s grudging.

So it’s no wonder, when we face the constant implication that we’re a burden, a tragedy, that so many expectant parents have a fear that their child will be disabled. It’s their worst nightmare: their expectations dashed, their plans in ruin. They’ve been told time and time again about all the problems faced by families in that situation. The fear is overwhelming and colors their feelings towards the child. It fosters resentment — this disabled child took away their dreams of happily-ever-after.

No. The child isn’t the problem, it is their belief in the lies told by the media and self-interested organizations that led them to think that a “perfect” child would automatically bring happiness. The truth is that happiness comes from love and acceptance, from strong bonds and mutual respect. Society has a sick, twisted, poisonous view of what success looks like, and a long record of destroying those who drink the kool-aid and fall short of the unreachable goals.

Acceptance is the only way to go. Acceptance of people as they are, not how you might want them to be. Acceptance of difference. And just as important, acceptance of self: discarding all the baggage of internalized hatred, shame and guilt. All children have potential, all children take effort to raise, all children are different. Instead of judging them, dismissing them as failures if they don’t meet some arbitrary criteria, help and support them to explore and learn what they can do.

Give them the tools, and see what they can build.