Just a Couple of Points

1) After I wrote my recent post on The Autistic Label and Identity, a friend commented that she was “all for embracing or claiming our label... as long as it doesn't include us considering ourselves better than non spectrum people... as I would never want to participate in reverse stigma or behaving in an egocentric manner as to presume our way of thinking is better or superior - as I all too often see in non-spectrum people towards us.” She made it plain that she didn’t mean me, that it was rather in reaction to “some Aspie groups internationally who go to an extreme and do articulate Aspie people as being 'better than' non spectrum people, superior etc.”

For the record, I want to state here that I do not, and never will, consider any group or individual better than another, whether it be on the grounds of race, class, gender, sexuality, ethnicity, nationality, religion, dis/ability, neurology, or anything else. Since I was a child, I have always known that all are equal in their essential humanity, their human spirit, their soul, if that word is acceptable to you. I’ve never spoken of it much, as I lacked the words to explain what I knew, and still can’t really put it into words. Yes, people vary in their abilities, intelligences, education, talents, personalities, strengths, etc. But that doesn’t erase the fact that they are all, at the core, simply human, and equal in that essential ‘human-ness’. Call me a (socially-blind) aspie, but I ‘treat a king and a commoner alike’. Because they are.

I realize that when we’ve constantly been told, and are still being told, that we are ‘inferior’ in some way or another, it’s very tempting to turn the tables and claim “well, humph, actually WE’RE the superior ones, we have these abilities, this outlook, this whatever” – but it simply isn’t true. We have lacks, and strengths. So do NTs. So does everyone. It’s part of being human. That the lacks and strengths are different doesn’t change that.

2) Further to the above, I want to state that my goal has always been, and always will be, the pursuit of truth. If that means uncovering, discovering, discussing or revealing things that are unpalatable, that people (even those on the spectrum) don’t want to hear, then so be it. No-one is served by the suppression of the truth. Suppressing it or turning away from it only corrodes us internally, keeps us small and fearful.

Yes, there are ways and ways to tell the truth, and I’d never want to hurt anyone, or have anyone feel I’ve put them down or told them they are useless, a failure, deficient as a human being, etc, etc – I’ve been told that too often myself. That is not my belief, nor my intention. So call me (once again) a (terminally honest) aspie, nonetheless, I believe we have a duty to ourselves and to those who come after us, to find / reveal / discuss / assimilate / tell ALL the truth, the whole truth, and nothing but the truth.

Because only by facing our truths, can we grow beyond our limitations, develop our strengths, and become all that we are capable of being, both individually and collectively – and that ‘all’ is very much indeed, much, much more than we are now.

The Autism 'Label' and the 'Disabled' Label

Another reason I suspect many on the spectrum reject the ‘label’ of autism, is because of the association with ‘disability’. Much of the little there is about autism ‘out there’ insists on calling it a ‘crippling disability’ – and few like to think of themselves as ‘crippled’, even if they have major difficulties with many areas of life. Their image of ‘crippled’ or ‘disabled’ is perhaps of someone drooling in a wheelchair, having to be looked after by others on a 24/7 basis. Or perhaps a blind or deaf person, an intellectually handicapped one, etc… “Well, I’m not like THAT!” they tell themselves.

It doesn’t help that the ‘disabled’ are often treated as though they are all intellectually handicapped, or incompetent to manage their own lives. For instance, recently two men here in NZ were not allowed to take the plane seats they had booked – because they were in wheelchairs. Not because there was no room for the chairs; rather, they were told, the airline had a policy of not allowing any disabled to fly without their ‘carers’. These were grown men, who simply happened to be paralysed from the waist down. They could take care of their own needs, and in fact were on their way to compete in a disabled sports tournament. They didn’t need ‘carers’, they told the airline staff indignantly, to no avail. They still weren’t allowed to fly. (The airline did later apologise, I must add here, though only after the men contacted the media.)

I have Chronic Fatigue Syndrome, a physical disability, and have had similar things happen to me. I have been patronised and talked down to, especially during the worst phases of my illness, till I sometimes felt like saying “it’s my body that’s weak, not my brain!!” That at times I felt I was probably more intelligent than them, made it even more insufferable.

In fact the disabled often seem to be treated as though they aren’t fully ‘human’, with the same rights and dignity as the ‘normals’. (Does this begin to sound familiar to anyone on the spectrum?) While their physical needs are better taken care of now than they used to be – eg ramp access to public buildings, disabled toilets - their psychological needs are still often brushed aside, at least by the general public. It’s presumed they should be ‘grateful’ and not complain if someone talks down to them, or literally over their head (“Does she need someone to take her to the toilet?”).

So ‘disabled’ is seen as ‘lesser than, weak, inferior’, and who would want to identify with that? This sometimes extends to not wanting to identify even with those on the spectrum who seem to be more obviously ‘disabled’, ie the ‘non-verbal’, non-toilet-trained adolescent or young adult, or anyone else obviously more ‘severely’ autistic or ‘low-functioning’. Some aspies or HFAs seem to draw a line between ‘them’ and ‘us’ – the ones who can ‘function’ in the world (albeit with difficulty), the ones who can go to school, hold down a job, start a family, hold a conversation (of sorts), etc, etc. “We’re not like them either”, seems to be the thought/feeling. (I would hasten to add here that not ALL ‘higher functioning’ autistics see things this way.)

But that line is proving more and more of an artificial one, as more and more of those once thought ‘severely autistic’ reveal themselves as capable of communication, even if it’s only on a computer keyboard or similar device. Moreover, my feeling is that the difference between ‘them’ and ‘us’ is one of degree, not kind. To draw such a line is to abandon our ‘less-able-to-pass-for-normal’ brothers and sisters. They need us, and we need them. We are all in the same boat, and what affects one ‘type’ of autistic, affects us all.

Moreover, I don’t feel there is any shame in admitting that we are ‘disabled’ in some areas of our lives. In fact, to be autistic means being disabled, at least to some degree, and in some areas of our lives. I would certainly admit to being ‘socially disabled’, and that this affects my ability to have relationships, make friends of anyone not also on the spectrum, and to relate to co-workers. I also have had major difficulties learning what are now termed ‘life skills’, which has also handicapped me in many employment situations, and I struggled for many years with ‘executive dysfunction’, until I learnt some pretty rigid ways of organising myself and my daily routines. I don’t feel ‘lesser than’, in saying this, nor do I feel my intelligence is demeaned, or my essential ‘personhood’ somehow diminished. I’m still ‘me’, and as worthy of respect as anyone else. As are you all, including those of us who are labelled ‘lower-functioning’, and as are all those people in wheelchairs, or with intellectual disabilities, or blind, or deaf, etc, etc. And the ‘normal’ people too.

We are all equal in our essential humanity, all worthy of respect as people, whatever our individual diagnoses or difficulties – or lack of them. It’s a point worth remembering.

On the Autistic 'Label', and the Autistic Identity

Lately I’ve heard a lot of autistics say they ‘don’t want to be labelled’, that they dislike labels. A lot of people seem to see a label as being the same as an insult, stereotype, or name.

A label is a simple description, like a label on a can or food jar (eg Baked Beans), or a physical diagnosis (eg heart disease), or a neurological diagnosis (eg Aspergers Syndrome). It only acquires meanings (negative or positive) in the mind of the speaker.

An insult of course is just plain negative. A label can be turned into an insult, eg when people turn ‘Aspergers’ into ‘ass-burgers’; or it can just be negative from the start, such as ‘weirdo’. Just about every Aspergers or HFA adult has heard these insults, many a time. Unfortunately.

And insults, in turn, can lead to stereotypes, where a ‘label’ is presumed to mean certain characteristics, usually negative, and insults such as ‘geeky’ or ‘weird’ are presumed to be true descriptions.

A name, on the other hand, can be either derogatory or flattering. “She’s a real go-getter”, is vastly different from “she’s a bitch”. “He’s a computer expert” is not the same as “he’s a total geek”. Thus a name can be either a compliment or an insult, and can either build someone up, or tear them down; make them feel good about themselves, or diminish their self-esteem.

And all of these are different again from an identity, which can also be positive or negative. Once, being female, non-white, non-heterosexual, etc, usually meant a negative identity. Various social movements turned that around, and now many are proudly gay, black, a woman, etc. Room has been created (often forcibly) for it to become a positive identity.

We on the spectrum have not yet established that positive identity, we have not yet created the room for it to happen, except in our own small enclaves – and sometimes not even there. And the rest of the time, we are abused, bullied, rejected, ridiculed, patronised, laughed at, yelled at, told how stupid and useless and hopeless we are, etc etc - and meanwhile the images of autism that are ‘out there’ are totally negative, and difficult to identify with - is it any wonder so many want to reject the label of autism altogether?

Yet a label and the new identity that comes with it can also mean a burden lifted, being freed from a tangle of low self-esteem and feelings of failure. It was certainly so for me when I discovered Aspergers Syndrome. For the first time, I had an explanation for what I had seen as a deficiency in myself. To find that there were others like me, that I wasn’t a ‘lemon’ on the human production line, was a revelation and a liberation. Yes, I had to battle through a lot of negativity in the material written about autism and Aspergers, but I began to see that though I lacked certain skills, I had other attributes which were actually plusses. My new friends, also on the spectrum, have helped me to see myself very differently. I have learnt to love my autism.

So let’s embrace our ‘label’ or identity as Autistics, because only then can we turn it around to become a positive thing, firstly amongst ourselves, then in the world at large. Because I want an end to the crippling self-hatred, low self-esteem and difficult lives of ALL my fellow autistics - to lift us out of the old ways of being autistic in a world that doesn’t understand us or want us. No minority group has ever changed the public image of their identity or ‘label’ by rejecting it, hiding away, or claiming to be ‘free spirits’. It’s time to change, to love our autism, to embrace a positive autistic identity. For all our sakes.

We Need Two New Words

I said in a previous post that we need to invent a new language for ourselves. I feel we are in particular need of two new words – words which could also help us to change that deadly negative image of autism, by defining the oppression inherent in it.

Let me digress for a minute. Back in the 70s and 80s, in the lesbian-feminist and gay rights movements, we coined a word - ‘homophobia’ - that aptly described loathing/fear/hatred of non-heterosexuals. Gays and lesbians also often had ‘internalised homophobia’. This came from being gay/lesbian in a world that largely disliked and feared us, and which was still only one step away from the ‘bad old days’ when homosexuality was regarded as ‘pathological’, a ‘sickness’ to be ‘cured’. Growing up in such a world, it’s hardly surprising that so many of us learnt to hate ourselves simply for being gay, and often even after we ‘came out’ and embraced ‘gay pride’, some of that still lingered within. On the one hand, it drove down our self-esteem, as we continued to hate those ‘obviously’ gay/dyke parts of ourselves. On the other, it meant we feared/avoided/looked down on others who, in our private view, were ‘too out there’, too ‘obvious’, too ‘different’. Thus internalised homophobia kept us powerless as individuals, and fractured as a community. These things still exist today, in spite of changing attitudes – many still believe homosexuality a ‘perversion’, and raise their children to believe this too. And if some of those children turn out gay….

At around the same time, various social movements were also coining new words – such as ‘ethnocentric’, which puts a certain race, usually white, at the centre of the universe. The implications of this throughout history have been many – slavery, colonialism, and the wholesale theft or ripping away of land and resources from ‘natives’. The excusing of killing of those ‘natives’ by whites, because they were ‘only natives’, and ‘doomed’ for extinction in the face of a ‘superior’ culture anyway. Native languages and culture being seen as ‘inferior’ and ‘savage’, and harshly repressed or even outlawed. Ways of life that had existed for centuries or even millennia destroyed, tribes and families broken or obliterated, rebellions cruelly put down. Etc, etc. And like homophobia, this attitude still exists today, even if the worst excesses of colonial power/racism are safely in the past. It surfaces every time some indigenous person dares to suggest that their different viewpoint should be taken into consideration on some issue. There’s still an implicit attitude that ‘white is best’, that European culture is superior, and everything else should take second place – or third, fourth, or last.

So we need two new words that describe these same attitudes towards us on the spectrum. One that describes the fear/hatred/loathing/rejection of the state of being autistic, and of autistics themselves; and the negative attitude many autistics have towards themselves as a result. ‘Aspie-phobia’? But not all of us fit the definition of Aspergers, or want that label. ‘Autistic-phobia’? Too long, and a bit clumsy, as is ‘autie-phobia’. Another alternative is something along the lines of ‘misogyny’ or ‘misanthropy’ – mis-autism? Hmmm… Maybe not.

The second word we need is one that describes the ‘neurotypical-centric’ view of the universe that currently prevails, and which is responsible for autism being seen as ‘lesser than’, an ‘inferior’ or ‘wrong’ state to be obliterated or cured as fast as possible so that all those poor autistic people can be just like the ‘normals’. And so those ‘normals’ never have to confront the ‘different’ ones, or accept that the culture of the ‘inferior’ ones might have any validity whatsoever, or that there might be anything good about being ‘different’. ‘Neuro-centric’? Sounds like a brain disease. ‘Neurotypical-centric’? Too long again. ‘NT-centric’? Most people outside the autistic community won’t know what NT means.

I’m out of ideas, so I’m throwing the field wide open. Any ideas, anyone??

It's Time to Change the Negative Image of Autism

It’s time to change the negative image of autism.

We see it everywhere – anywhere autism is mentioned you can almost guarantee, if it’s not written by autistics themselves, then the image of autism is overwhelmingly awful. It’s a ‘tragedy’ and a ‘burden’ on parents, or a ‘monster’ which ‘steals’ children away and turns them into cold, unfeeling automatons, spinning or flapping objects and ignoring people; it’s  something that should be ‘cured’ or ‘therapied’ away, gotten rid of, by whatever means possible, and as fast as possible. And the picture of adults is in some respects even worse. We are either totally non-existent and hence invisible, or we’re ‘institution material’ - little better than zombies to be ‘tidied away’ somewhere out of sight of ‘normal’ people, pitied perhaps, but never the equals of those ‘normals’. Or at best, we are personal-hygiene-challenged computer geeks, with zits and zero social skills, necessary perhaps but again, hardly fit company for ‘normals’.

As I’ve mentioned in a previous post, this is what my friend John Greally calls the belief “that ASD is something to fix / therapise / eliminate / exterminate.” Furthermore, he comments, “If I am broken, then lay me down, drug me, benefit me, patronise me, glint at my least achievement and parade me. And by existing standards we are all broken.”

Compare this to, for instance, the current approach to mental health. Paula Jessop, another aspie friend, has commented that people she talks to in the mental health field are amazed at the treatment of autistic people. They have said to her that autistics are in the position that people with mental health issues were in some twenty or thirty years ago, of being ‘acted upon’, rather than being encouraged to be in control of their lives/condition. And there are certainly many similarities between the old and often harsh treatments (shock treatments, incarceration in mental asylums, ‘zombie’ drugs, etc) once given to mental health patients, and the ‘therapies’ now being inflicted on many hapless and helpless autistics.

Remember those mental health ‘know me before you judge me’ ads? And John Kirwan, the ex All Black and hard man, talking about his depression? Perhaps we need a similar set of ads, and/or some prominent person to come forward and tell the public – we are not Bad, Wrong, or Retarded. We are simply Different.

Because the outcomes of the ‘broken’ or ‘deficient’ viewpoint can be, and all too often are, catastrophic. Children being dragged through harsh ‘therapies’, which can involve physical violence, punishments, denial of food, denial of stress-relieving stims or suppression of even the slightest ‘autistic behaviour’. All sorts of weird and not-so-wonderful ‘treatments’ inflicted on their young bodies, which in some cases have even killed autistic children (better dead than autistic, some parents seem to believe). Parents being told that there is no future for their child, that their child will never love them back, and suffering agonies over the diagnosis. Or spending fortunes on those therapies and treatments, exhausting themselves and their bank accounts in the process, or spending their days fighting ‘the Big Bad Enemy’ of autism. Some of those same parents talking in front of their children about how ‘terrible’ autism is, how much of a ‘burden’ it is, and how they want to ‘get rid of’ the autism, at any cost. Autistic children growing up knowing that their parents reject the core thing that defines who they are. Young autistic adults who refuse to identify with autism, even if it means they deny themselves support and what little services exist for them, because they have so thoroughly absorbed the ‘autism is bad’ belief. Or adults who do accept their autism, but spend their lives feeling bad about themselves, and wanting to be somebody else – anything else, but autistic. And yet other, older adults, who have managed to stumble through decades of adult life somehow, always knowing they are ‘different’ and anguishing over it, but never thinking to identify with autism/Aspergers, because, well, it’s those ‘weirdos / geeks / retards’ over there, right? Not them. Rock-bottom self-esteem, self-harming, depression, suicides, hospitalisations, stress-related physical ailments, high rates of unemployment or under-employment amongst adult autistics, and more. And more. Wasted talents, wasted lives, wasted money, wasted potential.

Demonizing the autism helps no-one, not the parents, not the autistic children, not the adults they will become, or the adults that already exist, nor even society in general. We have real talents and abilities that could be utilized for the benefit of all, which are being ignored. Instead of being considered a problem, we could be seen as a resource and opportunity.

This isn’t about denying the real difficulties we have, or the difficulty parents have in raising autistic children, especially the more ‘severely affected’. Rather, it’s about affirming that the image is wrong, not the autistic person. That to reject the autism means rejecting the autistic. Let me repeat that, so there is no misunderstanding. Rejecting the autism means rejecting the autistic person. Anyone who rejects their child’s autism, or their own, rejects the child, or themselves. Autism is not a ‘layer’ that can be peeled off to reveal the ‘real’ person underneath. Nor is it something that has ‘stolen’ your ‘real’ child. It IS the real child – or your real self. And it’s not bad, mad, a tragedy or a monster. Unless someone makes it into one, in their minds. It simply is. A different way of being, but not necessarily a lesser one – again, unless it is made so in someone’s mind, and then in their lives.

Perhaps we need our own ‘autistic pride’ movement, similar to that of the ‘Gay Pride’ or ‘Black Pride’ movements of the past. Certainly, the time seems right to push for more realistic images of ourselves in the media, to ‘come out’ as autistic whenever possible, to get the facts about what it’s really like to be autistic ‘out there’, to the media, the justice system, health professionals, the education system, etc etc. Indications are that at least some are willing and indeed even eager to listen and learn. I won’t say we have nothing to lose, that would be foolhardy, but haven’t we’ve suffered enough? Hasn’t there been enough pain, enough trauma, enough of everything?

So let’s do it. Let’s get out there and do whatever we can, in whatever way we can, to change how autism is portrayed, to put an end to those harmful negative images. I believe it’s the single most important and liberating thing we can and need to do, for all our sakes.