A Restless Spirit

This is going to be a more personal blog post than I usually do, and I’m uncertain how many others on the spectrum, if anyone, would identify with some of this.

Anyway, what’s been happening for me lately is the return of a perennial problem – a kind of deep-down restlessness. It’s afflicted me many times in the past, from childhood on, but I’ve never figured what it is I really want. I’ve tried assuaging it with this and that, speculated on what it might be from – winter blues, needing to be more creative, meditate more and better, go for a trip somewhere? - but with never any real answers.

I do know, or at least think, that it arises out of a kind of split or duality in my nature, two forces pulling me in totally different directions – and that have also been there my whole life.

On the one hand, is the side of me that likes order, tidiness, regularity, routine, everything fixed in its place, my life lined up like centimetres on a ruler. This side of me, as you might guess, is intrinsically linked to my autism. It’s the force that sees me religiously keep to my daily rituals, tidy my drawers so neatly that my mother once joked “are you sure you’re my daughter?”, and clean so hard it’s a wonder I don’t rub the pattern off things.

It’s also the part that gets flustered if things don’t go according to plan, or if something is out of place, the part that gets upset, or even panicky and close to meltdown, if there are serious disruptions to my routines and order. In recent decades, it’s the force that has driven me towards a semi-reclusive lifestyle, shying away from the world and curling in on my order like a wounded creature crawling into shelter. And in a sense, I was, and am. The world is messy, chaotic and unpredictable, and not nice to autistics. I’ve been damaged, as many autistics have been.

I’d be willing to bet many autistics, by this point, are nodding their heads and going “uh-huh, yep, I so know what you mean!”

But there’s another side to me.

It’s the side that craves stimulation, excitement, variety and yes, even change. That, every now and again, longs to break out of the box I’ve created for myself, this half-life that isn’t really a life at all, grab a few essentials, jump in my car and drive somewhere I’ve never been before, visit towns or even countries I’ve never been to, see sights I’ve always longed to see (Eiffel Tower, anyone? Stonehenge? No?), and do things the orderly side of me would look at in horror.

It’s the side of me that even remotely contemplates a relationship, even if it’s at some distant time in the future – something my other side shies away from like a nervous horse. It’s certainly the side of me that wants to see more of my aspie friends, be more ‘sociable’, have more of a life, in short.

It’s also the force that compels me to write, the side of me that, more and more, wants to grab the world by the throat, yell “listen to me!”, and tell them what it’s really like, being autistic. That wants to shout from the rooftops the truth of my life, and that of others on the spectrum. That wants to go back out into the world as a strong, independent and authentic aspie, and tell the world to Deal With It. Whereas my other side would prefer to stay cowering in my little cocoon of safety, hoping no-one will even notice I’m here.

The tension between these two forces within me is powerful. My orderly side would be quite happy living a near-monastic existence on some remote hilltop or plateau. My excitement-seeking side, however, would prefer the beating heart of a city. Tugged this way and that, by this need and that, I lurch from isolation to interaction and back again. I go away for a few days, enjoy myself, but then gratefully flee back home into my orderly little shelter. (Or should I say shell?) I go to an event, and then come home and crawl into bed for a couple of days. And so on.

At different times in my life, one side or the other has ruled. In my younger years, for example, my more adventurous side pushed me into social movements like feminism and anti-racism, fighting for the principles I believed in. I waved placards, chanted slogans, marched and demonstrated to stop the Springbok tour, defeat sexism, deny nuclear ships a welcome on our shores, return Maori land, and generally demand a better, fairer world. I was an ‘angry young woman’.

But then I started getting sick, and disillusioned, and heartbroken. So the ‘order’ side of me began to assert itself in a slow withdrawal from the world. And since exiting a very toxic relationship nearly twenty years ago, it’s been winning hands down. But now I feel like I’m stagnating… so the other side of me is breaking into flower again.

Overall, it’s definitely time for a weather change in my life. My autism and my CFS do pose limitations, it’s true, as does my sheer lack of funds. (Guess Stonehenge will have to wait a while.) But I do want, somehow, to have more of a life, live more authentically and more vibrantly. Somehow, I have to find a way to do this.

Watch this space.

THE AUTISTIC BILL OF RIGHTS

THE AUTISTIC BILL OF RIGHTS

by Penni Winter

It being self-evident that all autistics are human beings, we are entitled to enjoy, in full, the same rights as other human beings, including but not limited to the following –

1) The right to exist. We have the right to enter and stay in the world on the same terms as anyone else, and to not, at any stage of our existence, be subjected to any form of genetic testing, sperm or embryonic selection, abortion, murder, euthanasia or other types of genocide, solely on the grounds of our presumed or actual autism, or the alleged ‘burden’ we place on our families and caregivers.

2) The right to be our true selves. At all ages and stages of our existence, we have the right to be openly and thoroughly autistic, including the right to stim or exhibit other obviously autistic behaviour, without punitive suppression, harsh ‘treatments’ designed to ‘therapise’ our autism out of existence, or pressure to adopt a futile and taxing façade of ‘normality’.

3) The right to respect. We have the right to be treated with dignity and respect at all times and in all places, regardless of our age, perceived intelligence, level of functioning, ability to communicate, or any co-existing conditions we may have; and to not be the recipient of any form of violence or abuse whatsoever.

4) The right to a positive self-identity. We have the right to reject the concept of autism as a ‘tragedy’ or ‘disease’ in need of ‘cure’, to celebrate being autistic, to define our own autistic identity, and to assert being autistic as a healthy, valid alternative way of being human, no matter our age, functioning level, etc, as above.

5) The right to independence. We have the right to enjoy as much independence as we are individually capable of, to whatever extent and in whatever manner we choose, to have all necessary supports to enable this, and to not be incarcerated against our will, except where and until when a non-autistic would be incarcerated under the same circumstances.

6) The right to gather. We have the right to associate with other autistics on our own terms, to exclude non-autistics from those gatherings if we so choose, and to develop our autistic culture, without scorn, censure, interference or ‘management’, however well-intentioned, from and by non-autistics.

7) The right to political expression. We have the right, if we so choose, to advocate for these and further rights for all autistics, and to challenge the prevailing attitudes and practises around autism, without being patronised, ignored, excluded, scorned, attacked or told we are ‘not autistic enough’, on any grounds whatsoever.

8) The right to be included. We have the right to demand inclusion, in more than token numbers, on and in all and any decision- or policy-making bodies or proceedings about the status, rights, treatment or care of autistics, both in general, and in relation to any autistic individual or individuals.

“Nothing About Us, Without Us!”

About Those Functioning Levels

One criticism that frequently gets flung at us ‘higher-functioning’ autistics, especially autism advocates, is that we are “not really” autistic, because we are “not like” the non-verbal, faecal-smearing, constant-meltdown-throwing ‘lower-functioning’ ‘real’ autistics. I am personally becoming more and more uncomfortable with this criticism, and the division it seeks to encourage, for several reasons.

Firstly, because it discredits our experience, belittling all the struggles and hardships and misery we have suffered and continue to suffer, effectively saying they don’t exist or ‘aren’t all that bad’. It also flatly ignores the findings of a whole generation of researchers, scientists, doctors, psychologists, psychiatrists, etc, etc, who have clearly defined that autism is a wide-ranging spectrum, with a whole range of manifestations, all of which set us distinctly apart from neurotypicals. We have more in common, in a whole range of ways, with the so-called ‘lower-functioning’ than we do with these neurotypical critics who are so eager to exclude us right off the spectrum and back into the “no-person’s land” of the undiagnosed, that so many of us wandered lost in for much of our lives.

Secondly, the critics often ignore that they are talking about children, many of them very young children at that. They somehow assume that ‘low-functioning’ children will never become more than what they are now (or will only do so with heaps of expensive, time-consuming and often harsh ‘therapy’). But it’s impossible to say how much or in what way an autistic child will develop in the future, any more than you can fairly say what a young NT child’s true potential is. You can only allow and assist the child to grow, to develop their full potential, whatever that proves to be.

Moreover, the division between ‘high-’ and ‘low-functioning’ is really not as clear as they think. There’s no neat and tidy demarcation line, the one side of which we are ‘okay’, and on the other – something else ‘not quite human’. Many an adult autistic would have been classed as ‘low-functioning’ as a child, if a diagnosis had been possible then, or in some cases actually was. Some were non-verbal, late to speak or to speak properly (including me), weren’t toilet-trained till way past the ‘normal’ age, or were in other ways ‘behind’ in their development. Some are still non-verbal, or sometimes use communication devices, or have other communication problems. Some still have problems with toileting, self-care or ‘life skills’ and need daily support, or they have dietary, sleep and/or executive dysfunction problems, or they may look independent but in practise (as I do) rely heavily on their family for ‘interpretation’ of the world, and/or practical assistance. Many adult autistics still stim (if only in private), or find it an almost daily challenge to prevent or control their meltdowns. Most of us just struggle with life, period. We all feel the need for more support, even the ‘high-functioning’. Just because a person can join social media, write a blog, or even a book, doesn’t mean they are ‘fully independent’ - whatever that means anyway, in a world where we are all to some degree ‘inter-dependent’. Autistics like Amy Sequenzia, Amanda Baggs and Carly Fleishmann are prime examples of supposed ‘low-functioning’ autistics proving that just because someone is non-verbal, or only partially verbal, this doesn’t mean they are lacking in intelligence. But these critics see our writings out there, or in some cases hear us speak, and assume we are fully ‘independent’ and ‘high-functioning’, and always have been. Not so.

But my biggest problem with people trying to drive a wedge between low and high functioning is that when they say things like “Oh, but you’re not like those kids”, or “but those autistics have real issues that have to be dealt with by intensive therapy”, what I hear is “It’s okay for us to abuse those autistics, pour bleach down their throats, give them dangerous chelation therapy or electric shocks, forcibly suppress their stims, make them spend all day in strict ABA therapy with hardly a break, tie them down or lock them in small cupboards for hours at a time, etc, etc, because they’re not real people, therefore it doesn’t matter what happens to them, so you better not identify with them, or by golly we might just have to re-classify you…” It’s a silencing, a forced and arbitrary separation, a ‘divide and rule’, a not-so-veiled threat to keep out of the way ‘or else’. Or else we might end up being treated the same as those ‘not-functional’ others, the ‘worthless’ or ‘not-truly-human’ ones.

But too many of us already HAVE been treated ‘like that’. We have been institutionalised, had our hands forcibly held down, punished for ‘weird’ or ‘anti-social’ behaviour, given electric shocks, been bullied and abused, been forced into various and sometimes harmful ‘therapies’, been scolded, yelled or laughed at, or simply ignored when we tried to communicate our reality and experience. And some of us have seen it happen to younger versions of us, as Amanda Forest Vivian did when she interned at a school for autistics. In the Loud Hands anthology[1], she tells how she watched uncomfortably as autistic children, some verbal, some not, consistently had their autistic behaviour suppressed and punished. One boy, for instance, when he stimmed watching TV, would be hauled into an office and have his head held down while mouthwash was forced into his mouth. Others were grabbed and scolded when they attempted to skip, hop, jump or do anything but walk in a stiff, rigid line. They were told their hand movements were ‘silly’. Those who could talk but didn’t do so ‘appropriately’, were scolded for this too. And so on. As she finally concluded, “Autistic people do not get abused because they are low-functioning, they get abused because they do weird things.”[2] (My emphasis.)

We are ‘weird’ by ‘normal’ standards, and therefore vulnerable. We are ‘different’, and therefore vulnerable. ALL autistics are vulnerable. All of us have far more in common with each other than we do with NTs, no matter what our supposed ‘functioning’ level. As Amanda further points out, “If you were in the wrong place at the wrong time, the wrong age, the wrong functioning level, this could be your life.”[3]

And if we do not stand in solidarity with the voiceless, if we do not protest their mistreatment, it’s likely no-one will, and their abuse will continue unabated – because they are, and will continue to be, seen as ‘worthless’. And no-one will then protest our treatment either, if we should happen to have a breakdown or burn out, or simply get ill, and can’t ‘function’ as well as we used to. As long as ANY autistic is treated like this, is classified ‘not properly human’, we are all at risk.

But we should protest their oppression not only because it might include us. We should protest it because inside each so-called ‘lower-functioning’ individual is a human being, with their own thoughts, feelings, wants and desires, which we can understand better than any NT ever can. These are human beings who have the right to be themselves, to be respected, and to be treated with humanity and dignity. Let’s not forget that, or let others ever forget it either.

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[1] Amanda Forest Vivian, ‘They Hate You. Yes, You.’ Pgs 124-127, Loud Hands, Autistic People Speaking, ed by Julia Bascom/ASAN, 2012, The Autistic Press, Washington DC, USA.

[2] Amanda Forest Vivian, as above, page 127.

[3] Amanda, page 127.

A Review of the Loud Hands Anthology

I’ve been slowly working my way through the Loud Hands anthology, and I have to say, it’s pretty good. Some might be thinking, of course you would say that, your writing is in it! Well I leave it up to others to judge my writing on its own merits or lack of them, what I want to talk about is the other writings in the book.

There are so many good pieces here, I hardly know where to begin. Jim Sinclair’s historical and ground-breaking piece, ‘Don’t Mourn For Us’ (p13),  forms a good intro - written in the early 1990s, yet it’s just as relevant today. Then there’s his other seminal piece, ‘Why I Dislike “Person-First” Language’ (p152), also from the 90s, and also just as relevant.

There’s also Ari Ne-eman’s retrospective on how ASAN got started (p 66), where he states that one of the reasons for its beginning was that “good intentions and love were quite frankly just not enough… When people that you talk about, or set policy on, or conduct research regarding, are not in the room, even good people feel licensed to say horrible things. You cannot help people through pity and fear.” (My emphasis, as it’s something we should never forget, or let others forget.)

Nick Walker’s ‘Throw Away the Master’s Tools; Liberating Ourselves from the Pathology Paradigm’ (p 156), is a little more ‘academic’ or ‘intellectual’, and some may not like it for that reason, but as someone who came out of the feminist and anti-racism movements in the 80s, ‘the master’s tools’ is a phrase that has great resonance for me. It’s basically about how we need to step out of the dominant mentality, in this case the ‘autism as pathology’ mind-set, and create a new frame of reference, and new language, to describe our reality. Language is power, and changing the language is the way to empowering ourselves. I feel it’s a very important piece of writing.

Julia Bascom’s ‘Quiet Hands’ (p 119) is another important piece – even though I’ve read it before on her blog, it still gets me every time. Her ‘This is Why’ (p 134) also moved me to tears, as did Amanda Forest Vivian’s ‘They Hate You. Yes, You” (p 124). They also left me feeling angry and anguished about what’s been done to us, what’s still being done to us, as did Julia’s ‘Grabbers’ (p 137), and Shain Neumeier’s ‘Inhumane Beyond All Reason’, on the terrible things done to autistics and other ‘different’ people at the Judge Rotenberg Center. There’s so much out there that needs changing, and Zoe Gross’s ‘Killing Words’ (p 163), is a potent and chilling reminder of why we need to change things.

The most important thing about this book, however, is not so much the individual pieces, fine as they are, but what the whole book represents. Most autism books I’ve seen or heard of so far are either autobiographies by autistic people, books for parents of autistic children, or ‘self-help’ books for autistic people, often by those who are on the spectrum themselves. There’s nothing wrong with any of these, but I do feel Loud Hands goes a step further than all of them. More obviously ‘political’, It collects and collates important existing advocacy pieces, brings in new ones, and presents a vision of where we are, where we’ve been, and where we are going. It’s a new type of writing ‘about’ autism, one which has been slowly nurtured in blogs and social media groups and forums for quite a few years now, but this is the first time it’s all been put into a book, and published, and put ‘out there’ for all to read, and in doing so, it makes a powerful statement about us.

I believe that this book is our ‘Declaration of Independence’, our Communist Manifesto, our Long March, our October Revolution, our Stonewall Riot, our Our Right to Love, our The Female Eunuch, our ‘burning’ of bras (actually just publicly dumped in a trash can at a protest outside a beauty contest, but the media has never let feminists forget it), our Sisterhood is Powerful, and any other powerful event or book or document of liberation or explosion of collective frustration that you can name, that started some ball rolling, outlined some group or movement or country’s priorities, allowed one oppressed group or nation or another to redefine themselves, and get, or begin to get, their oppressor’s foot off their neck. I believe that some day Jim, Julia, Zoe, Amanda, Nick, Ari, et al, will be seen as our George Washington and Founding Fathers, our Martin Luther King and Malcolm X and Audre Lorde, our Shulamith Firestone and Robin Morgan and Germaine Greer, our Susan B. Anthony and Kate Sheppard and Pankhurst sisters, our Gandhi and Steve Biko, our Harvey Milk and, well, anyone else you can think of that did so much for their people, their brothers and sisters, their race or gender or sexuality or nation.

It’s that important. Read it.

We Are No-one's Responsibility

We autistics fall through the cracks, when it comes to ‘The System’. We are no-one’s responsibility, there is no agency charged with our care, no Autism Minister in Cabinet, no Department for Autism, no anything – in any country in the world, as far as I am aware (if I am wrong, please correct me!).

To some extent, this is because of our ‘newness’ to the scene, and our not fitting into existing categories whose care has long been the province of one government department or another. Those with mental health problems, for instance, have for centuries been taken care of by various institutions, and more recently by mental health agencies – whether or not the care has been the best is debatable, but nonetheless it has been there, from the days of ‘Bedlam’ (Bethlehem Insane Asylum) onwards.

In much the same way, those with neurological problems, whether genetic (eg Parkinson’s), age-related (eg Alzheimer’s) or acquired (eg brain injury), are the province of scientists and doctors specialising in their conditions, and also (in NZ) the Neurological Foundation. Those with physical disabilities are taken care of by various Disability or Health agencies, as well as in many cases also having well-established associations or foundations, all of which function within the ‘mainstream’ of society, and excite little or no controversy.

We don’t have this. But we nonetheless have our needs, and so there’s a gap[1]. And in this gap two things have flourished –

1) The parent-led autism groups, which range from the reasonably good to the absolutely diabolical. Not naming any names, but we all know who the latter are!

2) The ‘autism industry’, ie all the ‘quacks’, hucksters, ‘cure-peddlers’, scare-mongers and parent-fleecers, basically anyone who is trying to make a buck out of scared and overwhelmed parents.

For the most part, neither of these two groups (as we adults on the spectrum know all too well) want to listen to autistics, or let us participate in any but a token way, or meet our real needs, or even just rethink their stance on autism.

So whose responsibility should we be? Who should take care of us, meet our real needs, advocate for us, make submissions to parliament, etc, etc, for us?

There can be only one answer. We will have to do it for ourselves. There is no-one else that can do the job, no-one with the willingness or the depth of understanding of our needs and viewpoints, no-one else who has the mandate to express our views and agitate or advocate for us.

Yes, I know that it is hard. Very hard. I know that we all have our battles, and that many of us are barely getting by, struggling to stave off job loss or homelessness or daily sensory stress or breakdown of relationships or the hostility of those around them. I know how hard our lives can be, oh how I know!

But we have to do it nonetheless. We really don’t have a choice, given the state of our lives. We need to organise ourselves, formulate our agendas, define our most pressing problems, and make our voices heard – through whatever medium, and in as many ways as possible. Our lives are shitty precisely because we have no voice, our needs are not catered for, we are grossly misunderstood, etc. Anything and everything we do to try to change that has to have a cumulative effect – a bit like chipping away at a brick wall – eventually, it will start to crumble, and then collapse. The wall is our own personal Berlin Wall, behind which we are trapped and silenced, and it’s time for it to come down.

How we go about it will naturally largely depend on the abilities, inclinations and resources of both the individuals and the groups they form. Some of us would be good at, say, writing letters to the Editor of a magazine or newspaper, or writing books, or creating photos, paintings, posters or even movies that will raise public awareness. Others will want to tackle petitions or submissions to government, or public speaking, or research. Or liaise with the media, maybe even convince them to do a ‘TV special’ on us. Yet others will prefer to help in other ways – making banners or placards, raising funds, offering a bed or a meal to advocates/activists from out of town, or organising transport to get to a meeting or presentation. Some will simply get up the courage to speak up and challenge the ignorance of those around them, or to ask for accommodations at work, or for their autistic students or patients. There are many, many ways we can take part, no matter what our circumstances, or level of ‘functioning’. We need to just start from where we are, and see how our role develops. But be assured, we all have one.

Autism ‘Awareness’ Day is coming up in April – I suggest we use that as an opportunity to do something, however small, that will help our cause. That is my challenge to all of you – and I include myself in that too, of course. I would love it if 2013 was the beginning of real change in our lives, both individually and collectively. I know we can do it.

Maybe someday, there will be ‘Ministers for Autism’, government departments whose charge we are, agencies that can truly help us, truly meet our needs. Maybe. But until that day comes (and I’m not holding my breath waiting, given the current economic climate), we are on our own, and we have to do it for ourselves – and for the future generation of autistics coming along behind us.

Be strong, my friends.

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[1] In some countries, or parts of countries, we get some, usually grudging, partial support from disability agencies or government departments, which we are often clinging on to by our worn-down fingernails. But on the whole, they don’t really know much about us, or want to, or want to properly cater to us. Some doctors, scientists, psychologists, etc, are doing research on us, but as most of this study takes the ‘pathological’ bias as its starting point (ie they start by assuming our way of being is ‘wrong’, and the NT way ‘right’), it tends to just fuel the autism industry.

The Role of Non-Autistic Allies

Recently I’ve been reading a very interesting book, called ‘Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum’[1]. Edited by Stephen Shore, it’s a collection of essays on advocacy by autistic writers like Stephen himself, Roger Meyer and Lianne Holliday Willey. It’s well worth a read, if you can get hold of it. However it was one essay in particular, entitled ‘Building Alliances: Community Identity and the Role of Allies in Autistic Self-Advocacy’, by Phil Schwarz, which really got me thinking. Most especially, one sentence towards the end, where he says –

           

“There is one thing that is really important about being an effective [non-autistic] ally… That is the essential and critical quality of a true ally that an ally does not serve as an effective ally by implementing his or her own agenda or ideas about what people on the spectrum need. Rather, a true ally implements the agenda of the people to whom they are an ally.” (his emphasis)

Let me repeat that – a true ally implements the agenda of the people to whom they are an ally. This means that any non-autistic individual, or autism group or organisation who tries to impose their agenda on us, is not a true ally. Any group or individual or organisation which purports to ‘represent’ or ‘care’ for us, but which does not listen to us or consult us, which (literally or metaphorically) pats us on the head and says (directly or indirectly) “we don’t need your input, we know what is best for you”, is not a true ally. Any autism organisation which will not allow us a voice or membership on their boards or committees or panels, or which lets us in but then tokenises or sidelines us, or in any other way renders us impotent or silent, is not our true ally. Any individual who smiles patronisingly while we speak and then goes on talking as if we hadn’t spoken at all, is not our true ally.

I’m sure we can all think of prime examples of all of these. The question then becomes, what do we do about it? The above essay gives some really good ideas about how to build relationships with those who are our true allies, and it’s well worth a read. My concern right now though is, what do we do about the organisations who have already proved they are not our true allies?

It seems to me there are several options. We can ignore them, and/or work with other organisations who are more amenable to the autistic point of view. We can try to ‘take them over’, and convert them into true allies. We can pressure them into changing, from both inside and outside. We can build our own organisations, which will work to ultimately change public opinion so that the worst of these organisations (the ones we are unlikely ever to win over) will become impotent and sidelined themselves.

Which path we choose, will depend on each autistic individual or group, their abilities and inclinations, the situation from country to country (because this is a world-wide phenomenon), and even region to region, or year to year. (Changes in leadership may render an organisation more approachable, for instance.) We all have the right to choose which path we think is most likely to work for us as individuals and as a group. I would ideally like to see all of these tactics taken by different autistics and/or autistic groups, as a multiple approach/attack is likely to succeed better than a single one. We can and must all work in our different ways, to achieve what is really a single aim – that of the implementation of OUR agenda, and the full realisation of our human rights. We still have a very, very long way to go before that is achieved, and whatever path we take, it has to lead to the same place in the end.

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[1] Stephen Shore (ed). (2004) Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum. Kansas, USA: Autism Asperger Publishing Co.

We Are The Last Group That Will Be Liberated

We are the last group that will be liberated. The last ones that will have their oppression lifted, their plight seen for the travesty of justice it is, their status as fully equal human beings asserted. The last two centuries have seen just about every other group or minority move out from ‘sub-human’ status and into being redefined as within the range of ‘normal’ or ‘acceptable’. Now it must be our turn.

Once upon a time, the ‘norm’ was defined, at least in the Western world, as white, male, middle-class, heterosexual and of course sane, able-bodied and of normal intelligence. The attributes of this group were the standard against which all others were measured, the yardstick ‘everyone’ should ‘naturally’ aspire to, the best that any human could be. And if you weren’t all of these, you were somehow inferior. To a large degree this wasn’t even discussed, but simply assumed. It was the ideal pattern, the superior state, and that was that. In English-speaking countries, you could add ‘Protestant, of Northern European, preferably English, ancestry’ to that list, or, as the Americans call it, a ‘WASP’.

And then the challenges started. Women got uppity, demanding the vote and a decent education and all the rest. The lower classes formed unions and agitated for change and ‘one man, one vote’. Even ‘coloured’ people, once the shackles of slavery had been removed, began to slowly organise and strive for something better for themselves. And as the twentieth century moved on, the agitation only increased. Socialists came to power in some countries, or formed Labour Parties and got into Parliament in others. Formerly subject peoples threw off their colonial masters, and began to govern themselves. Those ‘coloured’ people started calling themselves Black, or African-American, and refused to sit in the back of the bus and accept second-class citizenship anymore. Women soon followed their example, for a second round of ‘uppity’ behaviour, and in the late sixties gays and lesbians began their own revolution.

The result is that over the last thirty to forty years, there has been a change in how such groups are regarded, with a consequent change to the common idea of the human ‘norm’. Publicly ‘out’ gay figures, mothers working full-time, women and dark-skinned people in prominent and powerful positions - even President of the US - are no longer seen as unusual or something to automatically reject even the idea of. In New Zealand we have gay civil unions, and have had two female Prime Ministers, one female Governor-General and two who are of non-white ancestry. And the sky hasn’t fallen yet.

And along with all this, there have been changes for other formerly powerless groups. Patients now have the right to be consulted and to choose their health care, where once they were simply passive recipients of ‘treatment’ from the Doctor Gods On High. Mental health patients have undergone a similar empowerment. The blind, the deaf and the intellectually handicapped, once powerless and marginalised into institutions, now enjoy a much better position and quality of life. The physically handicapped have also acquired ‘rights’, to accommodations such as disabled toilets and to being seen as fully human, even if in practise they are sometimes still treated as ‘not all there’. Nonetheless, it’s seen as ‘not nice’ to refer to ‘crips’, to laugh at someone because they can’t walk properly, or to talk down to/ignore someone just because they’re in a wheelchair – any more than it’s socially acceptable in most circles to call non-whites ‘niggers’, ‘chinks’ or ‘wops’, or to tell women they can’t do a particular job just because they’re female, or to say that lower-class or Black American accents are not acceptable on mainstream television.

That’s not to say that racism, sexism, homophobia, classism or even ableism, have all been eliminated. Far from it. But my point is that the idea of what constitutes the ‘norm’ has changed. All these groups are now seen as having fully human status, as being worthy of being treated well, even if they sometimes aren’t.

We are not.

It’s still okay for people to say in our hearing that we are ‘mistakes’ that should never have been born, or ‘thieves’ that have stolen away people’s ‘real’ children, or tragedies and burdens that have destroyed our parents’ lives.

It’s still okay – even commended – for people to say in our hearing that they ‘hate’ the autism that is the very core of who we are, without regard to the psychological damage that might do us.

It’s still okay for media to portray us almost entirely in a negative, patronising or pitying light, and to report unopposed the views of those who say that murdering us is ‘understandable’ and a ‘mercy killing’.

It’s still okay to force us into ‘treatments’, therapies or ‘restraints’ that can do us real harm, while denying us the support that actually could help us.

It’s still okay to refer to us as ‘retards’, ‘losers’, ‘geeks’, ‘nerds’ or ‘ass-burgers’.

it’s still okay to exclude us, reject us, laugh and jeer at us, bully us even as adults, deny us employment, and generally dis-empower us.

It’s still okay to demand that we suppress and deny our true selves and natural behaviours such as stims, even if they aren’t hurting ourselves or anyone else.

And it’s still okay to take it as a given that our ways of being are automatically inferior to those of neurotypical ways, and any difference between us is a ‘defect’ on our part.

Most of all, it’s still okay to see us as ‘not fully human’, as somehow lesser than the ‘normal’ people, as Not Good Enough to have rights just like any other human.

Because we are not seen as fully human, and we have no rights.

I’m not wanting to minimise any group’s struggle here, but it’s nonetheless true that even the blind, deaf, intellectually and physically handicapped, and those with mental health issues, are seen as more ‘normal’ than us. Unless they are also on the spectrum, there’s a shared outlook, a body of shared assumptions and attitudes, a natural facility with all the things we so struggle with, that they all have in common.

We don’t share it.

We are the ultimate ‘other’. The furthest ‘out there’ group, the last frontier of what it means to be human. Having spent time in the feminist and anti-racism movements of the eighties,  I believe our struggle will prove to be the hardest, the longest, the loneliest and the most complex of all.

None of which means we shouldn’t try – rather, it means it becomes all the more imperative, all the more needed, all the more necessary, that we do. And when we consider all the above treatments we are on the receiving end of, and the damage they are doing, all the more urgent. We have to do it. We have no choice. Because we are human, and it’s time to step forth and declare it, and take our place in the world.

How Much Is Our Autism A 'Socially Constructed' Disability?

I haven’t written much here recently, as I've been working on several other projects, including a submission for the Loud Hands anthology. During the writing of that, I did a lot of thinking about how autism/aspergers is perceived. Then ‘Autism Positivity Day Flash Blog’ happened on April 30th, in response to someone doing a Google Search on ‘I Wish I Didn’t Have Aspergers’. I also recently read a piece written by an autistic person who feels autism is a devastating disability that has ruined their life, and who rejects the idea of autism as ‘social construct’. All this got me wondering – how much is our autism a ‘real’ disability, and how much is it ‘socially constructed’?

Firstly, what exactly constitutes a ‘disability’? My Concise Oxford defines it as a “thing or lack that prevents one’s doing something… physical incapacity caused by injury or disease”. So for us to be ‘disabled’, we must be defined by our ‘lack’ or ‘incapacity’, by what acts as a ‘barrier’ to our doing or being the ‘norm’. (The assumption here of course being that the ‘norm’ is something we all ‘naturally’ want to do or be.)

Secondly, what is meant by ‘socially constructed’? It seems to mean two slightly different things. Firstly, it means if society accepts and caters for ‘differences’, eg if there are wheelchair ramps, ‘disabled’ toilet facilities, etc, in all public buildings (as there largely is in New Zealand), the ‘disabled’ will cease to be prevented or disbarred from many normal human activities – ie no longer ‘dis-abled’. Regarding autism, this could mean (and I wish it did mean, but alas not so, or not yet) accommodations being made for our different perceptions, eg separate offices with doors instead of open cubicles. Secondly, and on a deeper level, it refers to attitudes towards and assumptions about people with all kinds of ‘disabilities’. Specifically, for those with autism, it means that many of what are currently defined as our ‘lacks’, could be re-interpreted as simply different ways of perceiving or interacting with the world, and just as easily seen as a ‘plus’ or advantage.

My feeling is that the latter has a lot of merit, but can be taken too far. There are some aspects of autism that are indeed ‘disabling’. But what exactly are these aspects? One thing I have noticed is that many of the things autistics – or their parents - complain about tend to be actually either –

1) The ‘co-morbid’ conditions or factors - alexithymia, sensory processing disorder (and consequent sensory overloads), executive dysfunction, dyspraxia, etc;

2)  ‘Outer’ factors, eg difficulties or delays in communication or toilet training, or;

3) Their social difficulties interacting with, understanding or relating to others.

Thus parents will say things like -

- “I’m exhausted by my child’s constant meltdowns.”

- “I wish he could tell me why he’s so upset.”

- “She doesn’t seem to get why she should do it only in the toilet, and not her pants.”

- “The house always has to be locked up like Fort Knox.”

- “If things don’t happen exactly to schedule, she panics and screams for hours”.

- “He won’t play with other kids, unless they do things exactly his way.”

And autistics themselves say things like –

- “I wish I wasn’t always so disorganised.”

- “I’m tired of being overwhelmed by noises, smells, and bright lights.”

- “I hate being so clumsy, I’m always injuring myself and looking like a fool.”

- “I never seem to know what I’m really feeling till it’s too late.”

- “Why can’t I ever make real friends?”

- “I’ve never had a decent/any relationship.”

- “I can’t seem to get along with co-workers/bosses or hold down a job for long.”

By contrast, I haven’t really heard/seen anyone complaining that they hate what I regard as the inner ‘core’ of autism, ie our neurologically different way of thinking, feeling, processing, interpreting and reacting to the world. Perhaps they have, or perhaps they do feel this way, and I just haven’t seen it, or understood it. Perhaps. What I do hear/read is people saying things like “I hate how I can’t do this/always do that/how people treat me… but I love being me, the way I respond to nature/animals/art/music/etc, I like the way I look at the world…” Even many parents say things like “he can be so lovely, so innocently joyful and playful”, or “she’s so refreshingly honest, I’ve never heard her lie”, etc.

So we need to ask ourselves: how much – and which parts - of our autism constitute a ‘real’ disability? And how much – and which parts – are a ‘socially constructed’ disability, that would change or even disappear, if people’s attitudes changed? I feel the answer to that is probably both broad and differing somewhat for each autistic person. And also that this is a conversation we really, really need to have. Because how can we ask for assistance on the one hand, and yet promote ourselves as ‘simply different’ on the other, if we’re not ourselves clear on what is ‘disabling’ about autism, and needs special support or accommodations, and what is simply a ‘difference’ to be accepted? Not to mention the ‘autism rights’ movement is alienating some parents and even some autistics, who do feel their/their child’s autism is a major disability, and that this is being ignored by more (apparently) ‘higher functioning’ autistic adults.

And if proper assistance, early intervention, appropriate and truly helpful and focussed training and support (for parents, autistic children AND adults) was automatically provided, if suitable adaptations were not just ‘allowed’ but mandatory in schools and workplaces – what then would be people’s attitudes, to their own or their child’s autism? Would we still hear people saying they ‘hate’ autism? Would autism still be seen as – or be - a ‘devastating disability’?

I would really like the chance to find out.

On A Sense Of Dissonance

I know I haven’t written anything here for ages. I’ve been busy with an art project, but also I’ve been wrestling with something that I’ve become more and more conscious of lately, which is my sense of dissonance re the world. My Concise Oxford defines ‘dissonant’ as “not in harmony, harsh-toned, incongruous”, and that about sums it up. It’s the sense of ‘jarring’ or dislocation, of striking a bum note, whenever I bang up against the stark fact of my ‘difference’ from the rest of the world. From what other spectrumites have written and said, this is a given for pretty much all of us on a daily basis, even if the individual doesn’t have a word for the feeling, and it can have devastating effects.

It’s not just the sensory overloads, though that’s bad enough, but rather the attitudes behind the constant presence of the things that set off the sensory overload. It’s the constant bumping into a whole mass of assumptions, attitudes, expectations, demands, habits, beliefs and practises, etc, etc, that just feel alien to us. We confront this every time we read a book or newspaper or magazine, turn on the TV, look at advertising, walk out our front door, catch a bus or drive a car, go shopping, go to work or school, deal with government departments or the law, talk to others… in short, pretty much any and every interaction with the world.

I wish I could claim that we simply live in a parallel reality. But ‘parallel’ implies a ‘separate-but-equal’ status, something like the bars of railway lines – both bars are equally important and valid. But our reality is NOT seen as valid, or in any way equal to that of NTs. We’re told our feelings and thoughts are wrong or not good enough or simply ‘can’t be’ (“Nobody thinks like that!”), our opinions and viewpoints are ignored or denigrated or simply laughed at (“You are soooo weird…”), our sensory overloads are treated with impatience (“Stop making such a fuss about nothing!”), our needs seen as not real (“Why on earth should that matter?”), our stims suppressed (“For God’s sake, sit still!”), and we’re told that we must become ‘normal’, or at least present a façade of it, in order to be considered even halfway acceptable (“Why do you have to be so DIFFICULT? Why can’t you just be like everybody else?”). We are bullied, abused, reviled, rejected, excluded, ignored, snubbed, scorned, laughed at, shouted at, fired, locked up, and even killed, because what we are is seen as worthless - ‘worth less’.

I believe it’s this sense of dissonance that is largely responsible for so much of the depression, anxiety, stress and misery we feel (as well as the specific sets of experiences that create it of course). It’s what causes us to withdraw from the world, to quit jobs or study programs, to give up on relationships and/or friendships, to hide in our rooms or our houses and become sad, bitter, resentful, angry and jaundiced with the world. Its values and practises so often seem crazy to us. Its rejections hurt us. Its assumptions make us feel invisible. Its demands and expectations stress us to breaking point. We feel the world has no place for us and doesn’t value or want us. It can lead to addictions of various kinds, and even in some cases to suicide.

And many days, the weight of this feeling of dissonance threatens to tear me apart. Except in this blog, I haven’t really ‘gone public’ with my autism. I’ve been waiting till I can (afford to) get a ‘formal’ diagnosis of my Aspergers, feeling like I needed an ‘official’ stamp of approval before daring to call myself an Aspie/autie. But I can no longer wait. There’s too much misinformation out there that needs correcting. There’s too much hostility, too much ignorance, too much of everything bad vibrating around the very word ‘autism’, too much harm being done. And it’s in line with my greater spiritual goal of bringing more Light and Truth into the world. But none of these are the core reason I’ve decided to risk being more ‘public’ with my autism.

It’s because otherwise I feel like I can’t breathe. Depression tightens its icy grip on my heart, and my mind threatens to fracture into a million tiny pieces, leaving me feeling like I’m nowhere and nothing, like I don’t exist, don’t have any right even to exist. I feel crushed under the weight of a world that doesn’t allow for my different way of being. I feel alienated, invalidated, weak, and powerless. Meditation, the support of others, and the exercise of my creativity goes some way towards alleviating these feelings and preventing a downward spiral, but ultimately if I want to take charge of my life, own my personal power, I’ve realised I have to be openly, powerfully, fully and freely autistic.

I’m not saying that I think simply changing my attitude means that the world will just roll over, say “oh, of course!” and accept our reality - not even if every aspie/autie in the world did the same. We will still have to do the hard yards - enlightening when we can, educating if we must, and insisting anyway, any chance we have, on the validity of our experiences and our viewpoints, our needs and our ways. The way I see it, I, and we, don’t have a choice. I/we have to insist. I/we have to be “authentically autistic”. I/we have to continue the struggle, because the present situation is untenable, and its cost has already been way, way, way too high. For all of us.

'That' Type of Autism Parent, and their Criticisms of Us

 A while back, I wrote in praise of the ‘other’ type of autism parent, the ones who DON’T subscribe to the ‘autism as tragedy’ etc viewpoint. But today I’d like to examine the ones who do, especially those who claim that we adults on the spectrum, especially the activist ones, are, (in my friend John Greally’s words, from the type of emails he gets several times a week) “nothing but a pedo nanny-state interfering molester trying to get at their kid's life and wreck it, to stop the parents grieving their child to death with therapy and crap, to restrain them from lovingly ripping their child's autism mask off, the asshole who caused autism - or if not - the asshole who stopped him getting treatment by whingeing and confusing people, an obstacle stopping funding or taking funding, a fake malingering foil to his child's wellbeing, the distraction from his sons serious needs, the coward hurting his brave son's interests..."

I could go on, but I think you get the picture. But let’s examine these beliefs, one at a time.

1) That we are ‘against’ all therapy, and just want the child to ‘vegetate’ in their autism. Not true – rather, what we challenge is -

            (a) the GOALS they hope to achieve through therapy - ie are they trying to ‘normalise’ the child, to ‘eradicate’ their autism - or to teach them practical skills and knowledge that will help them function in the world as an autistic? (I will talk about ‘normalisation’ vs ‘skills-teaching’ in a further post.)

            (b) The TYPE of treatment or therapy they use – we have serious concerns about many of these. Some are punitive, a lot are overly demanding of time and energy, most are expensive, many are useless (and hence a rip-off), and some are just downright dangerous.

This DOESN’T mean we are against therapy altogether. See my earlier post about ‘cure’ vs ‘healing’ for more on this.

2) That we want to ‘wreck’ their children’s lives. Again, not true. These children are future members of the adult autism community, our successors in effect, why would we wish to harm them? This seems to be an extension of the belief we are against therapy, but also I believe it results from our statements that autism is not the ‘Big Baddie’. To them, it is, and so they interpret what we say as ‘condemning their child to a horrible life’. I really wish I could find a way to communicate to such parents that being autistic doesn’t necessarily mean having a terrible adult life – that there are good things about being autistic, that even the ‘worst’ features of it (meltdowns, communication difficulties, etc) can be ameliorated or minimized without eliminating the autism itself, and that other negative factors are the result of social attitudes which can be changed, just as attitudes to gays, people of colour, women, etc have changed. Life as an adult autistic is different, sure, but not a death sentence.

3) That we want to stop them ‘ripping the autism mask off’ their children, and thus ‘saving’ them from Big Bad Autism. There’s some truth in this – to the extent that we know that the autism is NOT a mask, not a ‘layer’ superimposed on an otherwise ‘normal’ child. It’s an integral part of their/our being, their/our identity. Attempts to ‘rip it off’ usually only result in the child realizing that this core part of themselves is Not Acceptable to those around them, and so they learn to hide it, to suppress their reactions etc, to their detriment in the long term. Depression and low self-esteem are huge problems for adolescents and adults on the spectrum. Is this really what these parents want for their kids? I know that most take this approach out of love, but it’s a misguided attitude, just the same.

4) That we are standing in the way of their kids getting funding for help and support. There have been a few instances in the States where autism self-advocates have opposed laws that would force health insurance companies to, for instance, pay for therapies like ABA. They’ve done so out of concern that these therapies are not the best way to help autistic children, or that such programs might de facto become the only ‘approved’ way to do so, and other, better ways might not be allowed as a consequence. Perhaps these instances are the source of this belief.

Or perhaps they think that if ‘higher-functioning’ adults get support, it will mean less of the government funding ‘pie’ for things like teacher aides or other support for their kids in school. Or maybe the mere fact that adult autistics exist and are speaking up to say ‘being autistic is okay’, in their eyes is somehow ‘dooming’ their kids’ chances of getting those things?

Whichever, it’s a false belief. The amount of help or support available to anyone on the spectrum, adult or child, is minimal to non-existent. It needs to be increased sizeably for EVERYONE.

5) That we are ‘fakes’ determined to distract attention away from their child’s serious needs. This is actually extremely insulting, not to mention based on false (and outdated) ideas of what autism truly is, namely –

(a) That only the most ‘severe’ or ‘classic’ autism, often now called ‘Kanner’s Autism’, is ‘real’ autism. This ignores the increased understanding of autism we now have. Do these parents just not know about this (which seems unlikely), or do they really think that all of the doctors, scientists, psychiatrists etc, who have been at the forefront of this change to a ‘spectrum’ view of autism (and that’s without mentioning the adult autistics themselves of course), have got it totally wrong?

(b) That the adult autistics now speaking up, simply because they have the ability to communicate, must therefore have no other problems or difficulties – and thus that we don’t have any ‘right’ to complain. It’s the “If you can speak, you’re not autistic” attitude. This is ludicrous. Firstly, many spectrum advocates aren’t in fact able to speak, or to speak consistently – they communicate wholly or partly through communication devices. Secondly, the ability to communicate, verbally or otherwise, is no guide to where the autistic person is in regards to the rest of their life. Autistic adults vary greatly in their abilities, degree of independence, etc, but even the most ‘self-supporting’ and ‘normal-appearing’ ones have major issues in a world that all too often doesn’t understand, tolerate, accommodate or accept them. And THAT is why we speak up!!

Sadly, the incorrect beliefs of these autism parents stop them seeing the things we are, at least potentially, in agreement on. I would really like to say to them –

“Please know that we too have the best interests of your autistic children at heart, even if we differ in what that ‘best’ is, and what is the ideal way to go about getting it. We have more in common than you think, and despite all the rhetoric and insults that have been tossed around to date, I still believe we can and indeed must work together in the long run, for the good of all autistic people.”

If only this message could get through, then a lot of totally unnecessary aggro could be avoided. Imagine if we all worked together to change government policy and social attitudes, instead of warring against each other. Imagine the power that would be unleashed, instead of it being wasted in mutually destructive conflicts.

Imagine the power we could have together. Imagine, and weep.

Some More Thoughts on 'Labels'

As I’ve said before, a diagnosis and the label that comes with it can mean the lifting of burdens, in the form of the freeing of a person from a tangle of low self-esteem, feelings of failure and being ‘stupid’ or ‘bad’ or ‘not good enough’.

But I have to acknowledge that this does depend on the social context in which the person experiences the ‘labelling’. When I accepted that the ‘label’ of Aspergers Syndrome applied to me, it meant (admittedly gradually, as the implications sank in) an end to feeling that I was somehow simply ‘wrong’ or ‘defective’, a sort of mistake on the human production line; certainly inferior, my ‘difference’ something to be ashamed of, and to try to conceal from others. I wished I had known years earlier, and could have gotten help and support instead of being reproached and condemned for my ‘errors’. I have learnt to love my autism, and embrace it as a liberation and a positive identity.

But the aspie/autie community was the deciding factor in this. If I had listened to and read only the ‘experts’, or how autism is commonly portrayed in mainstream media, or even the ‘hate autism’ people, I would almost certainly had my low self-esteem reinforced, seen my ‘difference’ as even more of a ‘deficiency’, a ‘wrongness’, something to be eliminated at all costs. I’d probably have ended up suicidal. But luckily I found instead a supportive and accepting community, people who not only thought, felt, acted and reacted as I did – and who said there was nothing wrong with that, nothing intrinsically wrong with being autistic, while also acknowledging the very real problems we do have.

The era we ‘come out’ in has an influence too. I’ve tried to imagine how my life might have gone if I had been diagnosed with some form of autism as a child, in the 1950s or 60s (possibly ‘mildly autistic’ or ‘with autistic tendencies’). The chances are I would have been viewed as at least borderline ‘mentally handicapped’, and shunted into some sort of ‘special education’, which would have been a gross insult to my intelligence. At the very least, I would have been excluded, pitied, and had it assumed I could achieve nothing worthwhile in life. Opportunities, education and employment that I did later take up, would have been denied me. I would possibly never have got married or had a child. How much more damage this would have done to me, than simply struggling through life on my own the way I did, trying to be ‘normal’, I don’t know. I suspect quite a lot. So the label helps me now, but probably would not have in a less enlightened era, when there was no ‘autistic community’, no ‘neurodiversity movement’, no ‘nothing about us without us’, etc.

This doesn’t apply only to autism. Take for instance my daughter’s years of struggle with maths, which caused her a lot of difficulties in school. It wasn’t until her adult years she discovered she fit the criteria for a condition called ‘dyscalculia’ (I’m not totally certain of the spelling on this word), which is the numbers version of dyslexia, and now a recognised learning disability. It was a relief to her that she hadn’t been imagining her problems. Had she had this diagnosis when younger, and been given suitable help, how much frustration and confusion could have been avoided. At the very least, teachers might not have spent years reproaching her for “not trying hard enough”, or telling her “but you’re intelligent, surely you can figure this out!”

On the other hand, even if she had had this ‘label’, she might have been treated as those with dyslexia were treated then – it’s only fairly recently that the NZ education system formally recognised that dyslexia even exists, and I’m not certain as to the status of dyscalculia. She might have had scorn poured on her, told she was ‘making excuses for laziness’, etc. Her school years might have been even more difficult. She might even have been shunted into a ‘slow learners’ class – which she most definitely was not. So once again, the social context makes a difference.

Over the last thirty or forty years, due to the efforts of the various ‘liberation’ movements, things have changed radically for those who are gay, women, or people of colour. No longer is a black person seen as only fit for menial work, or women fit only to raise children and serve men, and gay people are no longer considered (by most anyway) ‘sick’ or ‘perverted’. But autistic people (and disabled people, and even to some extent many of the ‘learning-disabled’) are still seen as ‘lesser than’, to be pitied, patronised, patted on the head, and – if we do dare try to speak for ourselves - told we should simply shut up and accept what is done ‘to’ and ‘for’ us, because ‘we know what’s best for you’.

It’s now our turn, our time. Time to assert ourselves, to say well actually no you don’t know what’s best for us, to affect a paradigm shift in the public perception of those on the spectrum. To make ‘room’ for ourselves in the world, as other minority groups have done, to create the space for us to be ourselves, in all our glorious idiosyncrasy, and still have meaningful roles to play in the world alongside our NT peers. To be equals, though never, ever ‘indistinguishable’ from those peers.

Let’s do it.

'Speaking Autistic'

I think just about every Asperger’s Syndrome or Autistic person has experienced the frustration of struggling to communicate their reality to someone not on the autistic spectrum, and failing. It’s my feeling that there are a lot of different reasons for this.

Sometimes the NT simply fails to understand what we’re trying to communicate. Some people are too impatient to truly listen to anyone else, and just dismiss our explanations before they’re halfway out of our mouths. Others just seem baffled, staring at us in blank confusion. Some, however, seem to get it, saying brightly, “oh yes, I understand!” - and then following this up with something which reveals that no, actually they don’t. I believe this is because, despite NTs’ supposedly greater empathy, they often aren’t able to ‘put themselves in the other’s place’ if that other’s ‘place’ is too radically different to their own.

At times, if we try to explain further, we hit another barrier – that of refusal to understand. If what we are saying can’t be even remotely fitted into what the NT considers ‘normal’, they reject it, telling themselves - or us - that this “can’t be” correct, that “no-one could ever think like that”, or even that it’s “proof” of something seriously “wrong” with us. (I kid you not, it has happened to me.) Dialogue usually ceases at this point.

But as well as all this, we often fail to express our truths clearly. For some, this is due to difficulty with the physical act of talking, or with organising or ‘translating’ our thoughts/mental images into words, especially under stress. Many of us have also been made to feel so much shame about our ‘difference’ that we’ve become unable to talk about it. And some of course don’t yet know or are still in the process of understanding that they’re on the spectrum, and thus of understanding that anyone else feels the way they do, and which they’ve been told forever is ‘wrong’.

But I believe there is a deeper problem – that of the language itself being inadequate to communicate the truth of our autistic lives. Too often, even those who are skilful with words, like myself, when we attempt to describe something from our reality, are told “but everyone feels like that occasionally”. This is like saying that because most everyone has felt breathless now and again, they know what it’s like to have asthma. Or that because they’ve  had a rash, they know all there is to know about living with eczema. The words of the English language (and possibly all languages) are somehow too ‘weak’, too bland or limited in meaning to convey the totality of what it means to live with autism.

Many people, for instance, suffer from a degree of social anxiety, due to lack of social skills and/or general shyness. But most wouldn’t know what it feels like to have to struggle hugely to take in what someone is saying (due to auditory processing challenges), consciously (if we can) work out any hidden meaning and try to ‘read’ the other person’s body language, block out multiple other sensory inputs – and then work out how to respond, without too much of a time lag – all at the same time. For your average NT, all this is done without thought. For those on the spectrum, it is hard work, and difficult enough with one person. With a group, or in a noisy setting, it becomes near impossible. We invariably miss so much that many of us just give up, and end up dropping out of most social activities altogether. ‘Social anxiety’ is a pale term for the potent mix of fear, hurt, shame, embarrassment, anger, avoidance and low self-esteem that results from a lifetime of such experiences.

Some words seem to mean different things to NTs than they do to us – the word ‘meltdown’, for instance. For many NTs (in terms of behaviour rather than nuclear power stations) it means a huge tantrum. But to someone on the spectrum, it means an agonizing breakdown. Many of us on the spectrum have attempted it, but it’s very difficult to express how it feels, for example, when you’ve spent too long in a crowded shopping mall, and all the noises, smells, and visual stimulations which up till then you’ve been successfully blocking or managing to ‘mute’, suddenly can’t be blocked any longer and hit you with full force, crashing down and drowning you under an intolerable weight. How your heart starts to pound, your breathing speeds up, thinking becomes incoherent, speech impossible, and all you want is to leave - NOW. And how, if you can’t leave, or people get in your face demanding “what’s wrong with you”, or start yelling at you, you can end up screaming, crying, or even throwing things, in sheer overwhelming panic and agony, all of which is misinterpreted as a mere ‘tantrum’. Either we re-define ‘meltdown’, or we need a new word.

Some words which have been coined to describe specific problems we have are just too clinical or detached. A typical example is that of ‘executive dysfunction’, a label for autistics’ difficulty with organising their daily lives. It sounds like a boardroom out of order, or a quarrelling committee. It certainly doesn’t seem to describe the extreme state many of us are familiar with. Typically, it means that we don’t really know how to organise ourselves, and when we do try, it just seems to make things worse. Our minds reel from one tangled skein of thought or haphazard activity to another, tasks are half-done or done badly and then abandoned, schedules and appointments are not kept, and we can end up standing in the midst of an overwhelming mess, reduced to tears and on the edge of that meltdown. Others tear us to shreds for our ‘failures’, we feel like failures, and struggle to just get through each day without disaster. Imagine a life where this is a frequent occurrence, and ‘executive dysfunction’ doesn’t even begin to cut it.

And we know that there are many, many more autistic experiences or states of mind for which there are no words at all, not even inadequate ones – there are only chaotic feelings, images without words to match them, or happenings which cannot be described – they can only be lived through.

Thus whenever we try to share our truths, we’re trapped and limited by these lacks in the language. Combined with NT inability or refusal to understand, and problems organising our thoughts into words, it is little wonder then, that we autistics feel as if we are “using the same words to speak a different language” to the NTs around us, and that we have ‘disabilities’ in the area of communication skills.

And no ‘social skills’ class is going to remedy that, nor can we expect NTs to change the language for us  – we have to find our own words to describe our own experiences, as have so many ‘disadvantaged’, ‘downtrodden’ or ‘minority’ groups before us. We’re only at the beginning of the process of change for us, and it’s obvious to all of us that there’s a lot of work to do. Finding - or creating - the words to express our reality is just one of those tasks, but I believe an urgent one.

Yes, I know there are some who, even if we do find the ‘right’ words, will never change their attitudes, or only very slowly – just as there were men who rejected the demands of the women’s movement, or white people who scorned the anti-racism message. (Having taken part in both these movements, back in the 80s, I can see a lot of similarities between them and the neurodiversity movement.) Nonetheless, without even the beginnings of a ‘language of our own’, we can’t begin to communicate our truths to even those NTs who might be receptive, and they can’t begin to understand, or to change their attitudes to, or practises towards, us. And until they do, we will continue to be misjudged, misunderstood, mistreated, excluded and marginalised. And I don’t know about you, but I’ve had quite enough of that.