So you think we're 'too high-functioning'?

Too often, when we autistic adults try to challenge the treatment given to autistics, we get a set of stock responses from some parents of autistic kids. They’re all variations on ‘you’re too high functioning to understand these people/the low functioning’, or ‘you’re not really autistic, because you can write/talk/live independently/have a job/blah blah blah’, or even ‘you’re not autistic at all, because you’re not like my kid’. Just about every autistic who challenges the treatment of autistics gets handed one of these dismissals sooner or later.

But, quite apart from the whole issue of functioning levels being nonsense anyway, there’s an entirely false bunch of assumptions wrapped up in this. So I have some questions for all those so quick to dismiss us and what we have to say as ‘not relevant’.

1) You’re sure we’re so ‘high functioning’? 

You see our writings, and jump to conclusions. But you can’t see behind the computer screen. You can’t see if we’re oral speakers or not, whether we need help to write or not, whether we use AAC or not. You can’t see how, even if we can talk, we may struggle to do it, or get ‘lost’ trying to talk to people because of auditory processing issues, or how stupid, alone or ashamed it makes us feel. You can’t see how we may need aides, or a lot of family support, just to get through each day. You don’t even know if we’re toilet-trained, or only partly so, or still struggle with knowing when we need to ‘go’.

Even if we do live ‘independently’ (or what looks like it), you can’t see behind us, to our executive dysfunction - the unwashed dishes or unvacuumed floors, the piles of stuff we don’t know how to sort, the struggles with getting to school or work on time, the jobs lost or the courses dropped out of – or the absolute rigidity we sometimes force on ourselves to prevent all this.

And even if we seem to ‘have our lives in order’, you can’t see if we struggle with anxiety or depression or other mental health issues. You can’t see if we have withdrawn from attempting to ‘do’ relationships, or hold down jobs, or do many other ‘normal’ things, because they’re just too overwhelming and difficult. You can’t see the times we retreat from public places because of sensory overload or too many social challenges. You can’t see the late-night crying jags, the pacing or frantic stimming or self-harming, the banging-the-wall meltdowns, the self-hatred or suicide attempts.

Or maybe you think if we have a job, or a relationship, or are attending regular school, then we ‘obviously don’t have any problems’? You can’t see the sheer lack of understanding from others that constantly fouls up our lives. You can’t see our co-workers or bosses ridicule, snub, manipulate, bully or simply fire us. You can’t see other students and even sometimes teachers reject, pick on or bully us at school. Or how we’re sometimes beaten up in the street, or abused by a partner, or by our supposed caregivers. You can’t see how often this ill-treatment happens, simply for being autistic. You can’t see how we lack the social skills or knowledge to prevent these things, or get out of them.

In short, you can’t see anything of our lives, or how well we may or may not ‘function’ in any given area of our lives. You don’t know us, you don’t know what struggles we’ve had or continue to have, so don’t judge us, or jump to conclusions.

2) You’re sure your kids will never be like us?

A mistake many parents of autistic kids make is assuming that because their kid can’t do ‘x’ by a certain age, that they’ll never do it. Or that they’ll never be independent, or have a life of any value if they aren’t ‘normal’. 

But this is simply not true. Not only is every child on their own developmental journey, regardless of their neurology (would you expect an NT three-year-old to live independently?), but we are often slower to mature than our neurotypical counterparts, which is no indication of our intelligence levels. We may not start talking till we’re twelve – and then go on to do public speaking about our journey. We may never speak, but learn to communicate in other ways – if those around us are listening. We may not get to higher education till we’re 25 – and then do very well at it. We may not live independently till we’re 30, or need to live in a group home, or be able to work with the right supports. Maybe we’ll even get married, have kids, a career, but just a little later or slower than others. Or maybe we’ll only do some of these things - but have lives worth living anyway. You can’t predict. So stop assuming they will never be like us.

3) You think we were never like your kids?

Even if we’re (apparently) ‘high functioning’ now, you don’t know what any of us were like when we were younger. You don’t know if we were non-oral-speaking till a late age, or slow to talk ‘properly’, or had a ton of speech therapy. You don’t know if we were late being toilet-trained, or had frequent huge meltdowns where we damaged things or hurt others, or whether we struggled with school or attended some form of special education, or didn’t even try to connect with other kids till we were teenagers, and so on. Unless you have or had some personal acquaintance with us as kids or teens, or we’ve told you stuff, you can’t tell. And even then, you won’t know the stuff we didn’t tell you. 

You just don’t know – what we were like as kids, or what your kids might be like, as adults. So stop dismissing us as ‘nothing like your child’.  

3) You think that only the most ‘severely’ autistic are ‘really’ autistic?

Even amongst professionals, that understanding has long been superseded and discarded. And we autistics don’t accept it either, because it means both our struggles and our strengths are denied or ignored, and because it attempts to divide our community. Even most of us who seem ‘high functioning’ (and I stress ‘seem’) don’t separate ourselves from our supposed ‘low functioning’ brothers and sisters, or our younger counterparts for that matter, because we see a continuum between ‘what they are’ and ‘what we are’. Any differences that do exist are those of degree, or stage of development, not type. We’re all autistic together.

This is why we oppose ABA. Some of us have already been through it, or something similar, and still bear the scars, and those of us who didn’t empathise with those who did, or who still are. We know how damaging it is, how those doing it to us fail to even begin to understand what autism really is. It’s also why we oppose a lot of other autism ‘treatments’ (e.g. bleach enemas), because we know them to be both a useless waste of money and actually harmful to us, not to mention all of them being based on the assumption that autism is a Big Bad Thing To Be.

And it’s also why we promote autism acceptance, not because we don’t have problems, but because even with all those problems, we can still take pride in being autistic, because, you know, it’s what we are, and why should we be ashamed of it?

So don’t jump to conclusions, don’t write us off as ‘not relevant’ or ‘not autistic enough’, or ‘too high functioning’ to be of any use to you in understanding and helping your child. We want to help, we come to you to offer our advice, and we hope that someday, you’ll be open to listening to us.

Because one day, your kids will be us.

Autistics Who Don't Fit The Stereotypes

We autistics are usually all too well aware of how the public image of autism is grossly inaccurate. The stereotypical autistic is usually seen as either –

a)     The non-verbal or barely verbal young boy, presumed to be intellectually disabled, non-toilet-trained, faecal smearing, constantly stimming, refusing to be touched or cuddled, with frequent meltdowns, and running away any chance he gets;

OR –

b)     The Asperger's-type geeky adolescent male, neck-deep in computers, who can code better than he can talk, with minimal social skills, emotionally cold, uninterested in making friends, and probably with questionable personal hygiene.

The professionals, meanwhile, describe us as being ‘deficient’ in things like theory of mind or empathy, and tell us we can’t imagine what others are feeling, or understand ourselves properly for that matter, or grasp abstract concepts, philosophical ideas, and so on.

We know that these stereotypes are not true, but even amongst ourselves, we can fall into the mistake of over-generalising. We’re much preoccupied with building community right now, searching amongst ourselves for similarities. We’re doing a lot of “Do you feel this, experience this?” or “Does anyone know what I mean by…?”; type stuff in our groups. We share, we support, we revel in our alikeness, after so many years of being always the ‘different one’, the outcast, outsider, weirdo, or reject.

And this is an excellent and much-needed thing. However, there is one drawback to it. And that is in our eagerness to find and share our similarities, we may gloss over our very real differences. Yes, we all have our autism in common, that ‘different brain’, but that can manifest in so many different ways.

Because for every behaviour or response or trait that even we think of as being ‘typically’ autistic, we can find someone on the spectrum who doesn’t have it, or do it.

Some of us, of course, are female, or non-white (a group waaay under-diagnosed), or not even in Western countries. We come from both genders and the inter-gender, all races and nationalities and religions and sexualities, all classes and sub-sections of humanity, and all ages too (you don’t stop being autistic the day you turn eighteen!).

But that’s only the tip of the iceberg. There are autistics, for instance, who are fine with eye contact, extroverted autistics who enjoy other people’s company, and who can do, and sometimes prefer, small talk, and autistics who find routines tiring rather than helpful, or who are comfortable with change and variety, or even crave it, hating being ‘stuck in a rut’.

There are autistics who have never had a meltdown, who are hypo-sensitive to sensory input, especially pain, whose stims are non-existent or kept very quiet and private or non-obvious, who have no particular ‘special interests’, or who are hopeless with maths and/or technology, preferring the social sciences or the arts or just about anything but computers.

There are whimsical autistics, and those who are totally serious. Many of us have a good sense of humour, although there are a few who must have been behind the door when they were handed out. There are autistics who can handle and even do sarcasm and metaphor, and those who can understand and use abstract or figurative language and/or philosophical concepts just fine.

And while many autistics struggle with friendships and/or relationships, choose not to try for them, or truly don’t want them, many others are able to build long-lasting connections with others, even marrying and/or having children. There are also many autistics who have no problem with physical or verbal affection, including to their children, though they vary a lot as to who with, and how and when, they express it to adults.

There are even autistics who can read facial expressions, though usually after many years of deliberately studying other people, while others are still on the beginnings of this process, or find themselves incapable of even beginning it. Some of us have learnt social skills to the point where we’re actually quite socially savvy, and some are just naturally ‘social beings’, and can work well in team or group situations, including workplaces.

There are also autistics who don’t have autism as their main identity, not because they view it negatively or reject it, but because other factors dominate their lives far more. These factors can include mental health problems, physical health problems, a racial, ethnic, cultural or religious identity, or indeed just about anything that they feel has shaped their lives far more than autism has.

There are even autistics who do (seem to) fit the popular stereotypes, though I personally feel that this is more superficial than real – there’s probably a good intelligence behind at least some of those non-verbal/barely verbal fronts, for instance, if the examples of autistics like Amy Sequenzia, Carly Fleischmann, Ido Kedar or Tito Mukhopadhyay are anything to go by.

This list could probably be even longer, but you get the picture. My point here, is that every time we say “autistics have/do…”, rather than “many/some autistics have/do…” we risk isolating those who differ from our type of autism, leaving them feeling left out and more alone than ever. Sometimes an autistic is rejected or attacked by others as ‘not properly autistic’, on precisely these grounds. And yes, that can and has happened, and it’s often very distressing to the individual concerned.

We need to be conscious that although we all have the different neurology that is the core of our autism, everyone expresses that neurology differently, and will have many other defining characteristics as well. We need to remember that our autism is only our autism, not everyone else’s.

And we all have the right to be whatever type of autistic we are, even if that doesn’t fit the majority view of ‘what autism is’, even in our own communities.

Normalisation vs Maximisation

A while back, I posted a piece on 'Normalisation' vs 'Teaching of Skills'(here). At the time, I knew that the latter wasn't a very good or even inclusive way to describe what i meant by this, but I couldn't think of a better word. Now I have. I've decided to call it 'Maximisation', as I feel this fits best what I mean. This is how I see the difference.

Normalisation is when parents (for instance) reject the child's autism, and see it as a 'tragedy', and become hell-bent on eliminating it, or suppressing all sign of it, no matter what the cost. While I am sure they (usually) mean well, it's my contention that they are mistaken in their belief that the autism can and should be eliminated (as opposed to specific problems, such as communication difficulties, lack of toilet training, etc). We all know instances of the horrors this approach can lead to, I'm sure.

Maximisation, on the other hand, is when parents (for instance) totally accept the child's autism, but want to maximise their child's happiness and chances in life as an autistic person, through various therapies, whether they be physical, social skills, biomedical, whatever. And it's my feeling that many parents are quietly going about things in exactly that way, despite the 'doom and gloom' messages being trumpeted by the big autism organisations.

I guess there are no prizes for guessing which I feel is the best approach, and the one most likely to lead to both the autist's happiness, and that of the parents, in the long run (less stress and expense).

Autistic Low Self Esteem and the Autistic Community

When some adults make the realization that they are on the autistic spectrum, instead of feeling liberated, it can plunge them into feeling even worse about themselves than they did before. Before they knew what they were, they could tell themselves they just weren’t trying hard enough, or the right way, or they were just stupid, or imagining it, or it was other people’s fault, etc, etc. They had hope, in other words, that someday they would find a way out of their difficulties, and become ‘normal’. Being told you have autism, then, destroys this hope. It can feel like being told you’ve been sentenced for life.

Some try to deny this, and adopt an attitude of ‘Okay, now I know what’s wrong with me, I can fix it’ – only to find there is no ‘cure’, no magic pill or surgery or treatment to make them ‘normal’, no ‘social skills training’ that will transform them. Or they can become depressed and self-punishing (or more so, if they were already), plunging into even lower depths of self-hatred than they already were in, because ‘now I’m really fucked!’ Some end up trying even harder to be ‘normal’, and dreading anyone finding out about their ‘terrible disease’.

All of this, of course, is connected to their low self-esteem, which in turn is connected to both the highly negative public image of autism, and also to how they have been treated by those around them – regardless of whether others know they are on the spectrum or not. When you’ve had a lifetime of being laughed at, yelled at, sneered at, scorned, scolded, ridiculed, condemned, rejected, ignored, bullied and harassed; of being told you’re useless, not good enough, a failure, a loser, stupid, weird, crazy, anti-social, cold, arrogant (to list but a few of the many insults commonly thrown at us), when it’s been made abundantly clear that who and what you are is not valued in the slightest, it’s really hard to have a good self-esteem. Then you add on top of that the images of autism and Aspergers that are common in the media and the public perception – cold beings with no emotions, no interest in other people, incapable of love or empathy or caring for others, obsessed with weird things, lost in their own private worlds, often incapable even of speech; or (if a little more ‘higher functioning’) semi-robotic geeky computer nerds with no manners or social graces, no sense of humour or imagination, again no emotions, and probably with poor personal hygiene as well. It’s not a pretty picture, and why would anyone want to identify with that, or be identified with it, in other people’s minds?

The only way out of this hell of self-hatred is to find your own kind. Only in doing so, can we ‘compare notes’, discover what strengths and weaknesses we really have, start destroying the myths and the negative stereotypes (at least in our own minds), and form a truer image of what it really means to have autism. We can find support, friendship, understanding, and acceptance. We can look at other autistics and see, hey, they’re not so bad, maybe I’m not so bad either… No, we probably won’t get along with or even like every other autistic person we meet, and we may even meet some who seem to come close to the stereotypes. But the aspie/autie communities are still the only place we have where we can be ourselves, and find others like ourselves, and even more importantly start undoing the damage a harsh, unaccepting world has done us.

Because it’s time to start undoing that damage. Time to throw off society’s negative image of us, time to start believing in ourselves, to start feeling okay about our autistic selves, to realise that while we have our problems, there is nothing wrong in itself with being autistic. This is hugely important, so I’ll repeat it – THERE IS NOTHING WRONG IN ITSELF WITH BEING AUTISTIC. I doubt I could say this enough. In the past few decades women, gays, people of colour, and all manner of groups have rejected the usual negative images of them, and, believing in themselves, formed new, positive images, that in turn changed society’s image of them, and consequently how they were treated. We can do the same. But first of all we need to start with what’s in our own heads.

I’m not saying it’s easy, I know (oh, how I know!) it isn’t. And my heart goes out to all those who still suffer from poor self-esteem because of their autism/Aspergers, especially those who haven’t yet found any others like themselves, or who have (online perhaps), but are still in their day-to-day lives socially isolated and/or stuck in negative environments where they continue to be badly treated because of their autism. I know how it can be a huge struggle just to get through each day, and emotionally limp home to recharge your batteries for another round tomorrow; and how being part of some neurodiversity movement can just feel like an added burden, or as impossible as flying to the moon. I know that feeling, only too well. But even if we can’t get ‘out there’ and be some hotshot activist, we can still change in ourselves. We can reach out to others like ourselves, we can reject other’s condemnation of ourselves, we can change the image of autism in our own heads. We can realize that’s it’s okay to be different, that ‘normal’ is over-rated, that we are okay just as we are, as our truly autistic selves. We can love ourselves, and each other.

Because if we don’t, for sure no-one else will.

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.

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.

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.

First Responder Training in Autism

One thing which has been on many aspies’ minds as a result of the Arie case is the need for police and other ‘first responder’ training in how to recognise and handle autistic people.

Now some might think, “oh, why should they get special treatment?”, but the issue is not ‘special’ treatment so much as appropriate treatment. Imagine, for instance, that a police or ambulance officer sees a person staggering down the street, maybe falling down, twitching and shaking, slurring their words. Their first thought is likely to be “hmm, got another drunk or druggie here!” But if they then found out that the person was actually a diabetic in dire need of insulin, or an epileptic on the edge of a seizure, their whole approach would of course change.

And so it is with autism. Use your imagination once again, and visualise a police officer who encounters a person who ‘walks funny’, who makes inappropriate eye contact or none at all, who ignores social niceties; flinches from bright lights and the clanging of steel doors, seems confused under questioning, gives ‘strange’ answers, or asks lots of ‘strange’ questions themselves; someone who perhaps rambles on and on about things that have no relevance whatsoever to the situation (in the police officer’s eyes anyway), or at any point suddenly ‘shuts down’ and refuses to talk anymore, or insists on using a communication device that the police don’t understand; or suddenly goes into a huge ‘tantrum’, throwing objects, screaming and shouting, or bursting into a sobbing fit, perhaps banging their head against a wall.

If this hypothetical officer had no experience with autism, and no knowledge of it, wouldn’t they likely think the person was drunk, drugged, a psychiatric case, or guilty of something (“He won’t look me in the eye”), or just ‘faking it’ (“She could talk just fine half an hour ago!”)? But a basic knowledge of autism would enable them to see that the person is simply frightened, confused, overwhelmed, and probably experiencing the breakdown or loss of what few social skills they possess, not to mention sensory overload; and that further pressure will only worsen the situation. They could dim lights, provide a less noisy environment, etc etc, and above all not assume the person is ‘guilty’ simply because they don’t respond ‘appropriately’.

This is not ‘special treatment’, but simply common sense, once you understand just how differently autistic people experience the world around them. It’s similar to how knowledgeable individuals interact with people of different cultures. In Samoan culture, for instance, you always put yourself physically ‘lower’ than someone who is above you in status, and staring someone right in the eyes is considered rude. Thus a Samoan, intending to be polite, will immediately sit down, and won’t meet your eye. If they didn’t know, a ‘Palagi’ (white person) might think the Samoan was being rude or evasive. Many other cultures have similar rules. It’s generally only in Western cultures that looking someone straight in the eyes is considered a good thing. This is just one small example of how things can seem very different, once you understand the person you’re interacting with, and where they are ‘coming from’.

Training in awareness of autism for police and emergency personnel isn’t about ‘special treatment’, but rather about understanding and helping all members of the community, in the best way possible.

Justice for Arie - Part Four

It’s said that every cloud has a silver lining. Just last year, at an aspie gathering, we were talking about how we on the spectrum have been slow in building a really solid ‘neurodiversity’ movement similar to the feminist, gay and black liberation movements. This is because our very nature – individualistic, eccentric, lacking in social networking skills, executive functioning skills and sometimes even social inclinations – means such a ‘social’ movement has been hard to get going properly. Not to mention the fact that simply surviving in an NT world is struggle enough for many of us without being politically active as well. (I do respect the neurodiversity activists everywhere, who have done their best to create such a movement. It’s simply that most aspies/auties are not in touch with this, or able to participate, for all the reasons I’ve said.) I remember remarking that we needed some kind of a ‘cause célèbre’, to bring us together, fire us up, the way that the gay liberation movement for instance was started by the Stonewall Riot in the late 60s, and further fueled by the murder of Harvey Milk.

Well, now we’ve had one. This doesn’t mean for one moment that I would have wished on Arie and Michael, or anyone else, the troubles they’ve had. I simply meant that lacking such a case, we would remain largely fragmented and isolated. Arie’s case has brought Kiwi aspies and their NT friends and supporters together in ways nothing else has before, organised and galvanised spectrumites like never before.

Let’s not let this impetus subside again. Let’s use it to, for instance, get some real training for police and other emergency staff, as to how to recognise and best deal with those on the spectrum. Let’s use the contacts forged with the media, to take the next steps forward in bringing our issues before the public eye, and in increasing understanding of those on the spectrum – and perhaps finally ending at least the worst aspects of our long, lonely, marginalised and invisible existence.

Let’s start writing – more blogs, magazine and online articles, plays, books, TV and film scripts, etc, etc, etc, and populate them with realistic, fully-rounded (for once) autistic characters. Let’s paint and sculpt and create music, and do whatever else we want, in ways that express our autistic reality. Let’s stop being ashamed of and hiding our real selves, and let them out, in all their stumbling, rambling, quirky, eccentric, but magnificently unique glory.

And let’s start insisting to government departments and the like, that they change what my friend John Greally of Aspergers Syndrome New Zealand calls their “old deeply flawed premise that ASD is something to fix/therapise/eliminate/ex​terminate”, and instead insist on policies that can offer real help. Let’s transform the question, as he puts it, from "what are we [NTs] going to do about ‘their’ behaviour" (ie fix the broken) to "how can we appreciate them more for being who they are" (love the gift)”. Let’s get out there and create some real, and long overdue change.

And let’s see the light bulb, not the puzzle piece, become our symbol. Let us ensure a light bulb of awareness goes on for everyone.

The Spoon Theory, CFS and Aspergers

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/comment-page-19/#comment-86592

I found this website through a link on a Facebook group, and it’s well worth a look, especially if you have a long-term, ‘invisible’ illness or disability – or if you haven’t, as it will give you some idea of what it’s like to live with one.

I contracted Chronic Fatigue Syndrome in my late 20s, though it took another ten years, and a severe relapse, before it was diagnosed. Back then, it was a ‘new’ disease, and just as is starting to happen with Aspergers now, many of us who had it were derided as ‘riding on the bandwagon’ of something ‘fashionable’. We were sometimes told “it must be nice to just lie around and rest!” But believe me, there was nothing ‘fashionable’ about it (it was actually being diagnosed as far back as the 1920s, under different names). Nor was there anything ‘restful’ about being so weak I could barely walk, or lying awake well into the night sobbing because of the pain in my muscles, or being unable even to read or watch TV or have more than the briefest of conversations, because the mental effort was just too taxing.

I have long measured my illness in elephants. Years ago, I read somewhere (sorry, I can’t remember where, so can’t credit it), that having CFS is like having an elephant sit on you. I can personally testify that yes, you do feel that ‘crushed’ and broken. When my illness was at its worst, ‘elephant days’ were pretty much constant, thankfully they are now few. Many days are ‘elephant-free’, though I still don’t dare overtax myself. And on yet other days, the elephant sort of …hovers. Those days, I must be especially careful when I ‘measure my spoons’, when choosing what and how much to do.

There are of course many parallels between CFS and Autism, and the spoon theory will resonate with many on the spectrum. We on the spectrum must also calculate what’s within our capabilities. If we go out shopping in the afternoon, we may not have the mental, physical or emotional capacity to do anything ‘social’ in the evening. If several hours of our work day are taken up by a meeting, we may be too ‘empty’ to interact with a partner later. And so on. Even the simplest things take so much more of our time and energy, we have a social ‘thimble’ rather than a social ‘cup’, and we must be careful not to stress ourselves to the point of meltdown or shutdown.

And like so many with invisible illnesses or disabilities, we get little sympathy, because no-one can SEE our pain, our suffering, our exhaustion. Or not until we totally freak out or collapse or go into meltdown. And even then, we can be judged, told we are ‘making a fuss about nothing’, or ‘being a drama queen’, or to ‘pull yourself together!’ Etc, etc, etc. If you’re on the spectrum, and/or have a major ‘invisible’ disability, you’ll know the sort of thing I mean. It’s things like this, that see so many on the spectrum identify with other disabled, and some even join the disability rights movement. Personally, I don’t have the energy. (Calculating those spoons, those elephants, again.) But I do understand why.

So give it a read. Let me know what you think. And if you don’t have a disability, and/or aren’t on the spectrum, then maybe, next time someone who is, or who has one of those ‘invisible’ disabilities, tells you they can’t do something, believe that they really, really, can’t do it.

Five Things We'd Like People to Know About Adults on the Spectrum

Paula Jessop, a Kiwi aspie and friend of mine, was preparing a presentation on ‘Adults with ASD’ recently, and asked us aspies on Facebook, what were ‘The Top Five Things We Want People to Know About Adults on the Spectrum’. The resulting discussion set me off thinking, and I’ve formulated my own list - with contributions from Gabrielle Hogg, Karleigh-Jayne Jones, Rebecca Lumsden, and Leith McMurray.

Anyway, here’s my five things :-

1) That we are human beings first and foremost. We have wishes and dreams, hopes and ambitions, experience love and anger and happiness, the same as NTs do. We may experience them differently, or have different dreams, but the similarities are often stronger than the differences. Sometimes it’s too easy to perceive our behaviour solely through the distorting lens of ‘they’ve got this Condition’. As Rebecca puts it – “Not ALL our behaviour is autistic, sometimes I’m just having a bad freaking day.”

2) If you’ve met one person with autism, you’ve met one person with autism. “Every person with autism is an individual, our autism is expressed differently for each of us.” (Rebecca) Autistics are not all maths geniuses (I’m certainly not!), computer nerds, train-spotters, and/or lovers of fantasy/science-fiction. Nor are we all (or even mainly!) recluses and obvious ‘oddballs’, social rejects with no sense of humour and a lack of personal hygiene. Many hold down jobs, or are married and/or raising children. Some of us have become very good at concealing our autism to ‘fit in’ (it’s still there underneath of course). And some of us are female. As Gabrielle points out, “ASD looks different in women.” A stereotype is just that – a stereotype.

3) Autism is a Developmental Disorder. Our development is delayed, meaning that we often can’t do things at the 'normal' age, but this doesn't mean we will never be able to do it. It might just take us a whole lot longer. “Adults with ASD still may need help in independent living skills… [and some] may need help with communication issues… having a communication device may help them to become more independent!” (Gabrielle) Nonetheless, we are capable of much more than people think. “Don't underestimate us cause with the right support, we can do awesome things.” (Karleigh-Jayne)

4) Many of us have other, ‘co-morbid’ conditions as well. (Gabrielle)This of course complicates the individual picture! These ‘co-morbids’ can include any or several of the following:-

Dyslexia, dyscalculia, dysgraphia, dyspraxia, hyperlexia; ADD/ADHD, sensory processing disorder, auditory processing disorder, prosopagnosia, executive dysfunction, communication difficulties; bipolar syndrome, depression, anxiety disorders, social avoidance disorders, alexithymia.

All these also occur without autism, but there is a high correlation. Most we are born with, but some are acquired through living in a world we find confusing, overwhelming, discouraging and unaccepting, eg depression. But never assume that a difficulty you have with an autistic person is due solely to the autism – it may be because of the ‘co-morbid/s’. Sensory issues especially “can make life hell!” (Gabrielle) Autism can also occur with unrelated conditions – I have heard of autistics who are blind, deaf, Downs Syndrome or physically disabled.

5) Autism means a different ‘mindset’. We act differently because we think, react, and feel differently to NTs. This different mindset is ‘hardwired’ into us, and can mean -

i) A focus on things rather than people, especially our ‘special interests’.

ii) An often extreme perfectionism, and rigidity of routines - “Please don't make plans and change or complicate them at the last minute! Make sure that your aspie friend knows exactly what to expect at an event/appointment etc.” (Leith).

iii) A lack of any instinctive ability to ‘read’ other people, which can make us appear ‘rude’ or ‘arrogant’. “Bluntness in speech may cause offence, this is not malicious… It is quite ok to point this out to an aspie (politely) and suggest it be re-phrased or recognised and apologised for… Emotion neutral is the way to raise problems with an aspie.” (Leith)

iv) Social difficulties and sensory overload means we can get overwhelmed easily, which leads to shutdowns or meltdowns. This is often beyond our control, so, as Leith points out, “Quiet and patience are the only tools to use, and it may take a couple of days for us to fully recover!”

And above all, remember – “We may not appear stressed, but interacting with NTs is way more stressful than they might imagine.” (Leith) A spoonful of simple kindness goes a long way.