That Autism 'Suffering' - Part Three

In this final installment of my investigation into the causes of our suffering, I examine 'external' causes. Not all of us will suffer from all the internal causes, but it's probable we all do, in one way or another, from the external ones. These can be roughly grouped in the following categories -

      i) Other people's attitudes towards us - gross distortions and misunderstandings of what autism actually is, what an autistic child or adult 'looks like', or behaves, or why, or what we're capable of, invariably cause us distress. Hearing all the negative opinions so many have about autism can cause us to feel alienated, self-hating and depressed, especially if it's coming from those closest to us, or from a seemingly ignorant and blinkered media. These distorted beliefs can see us -

- as children, hearing our parents say to others, right in front of us, that they wish we weren't autistic, or that autism is 'dreadful', or that it causes them to suffer, etc, etc.

- having adults refuse to listen when we try to tell them we're being bullied, and/or being told it's our own fault, for 'choosing' to behave in certain ways;

- being criticised for 'attitudes' we don't in fact have, or told we're being something (e.g. rude) we in no way intended, and then not listening when we tell them this;

- being told that we or our child "don't look autistic", or that we're "just jumping on the latest bandwagon", or "making a big deal out of nothing";

- having it assumed we "can't' do" such and such because we're autistic, and then if we show we can, being told that we "can't really be" autistic then;

- having what we say ignored or discounted because we "don't understand" emotions or ourselves or can't do theory of mind, etc, etc;

- having hostile autism parents call us various nasty names, and claim that if we can communicate at all we "can't really be" autistic, and should be ignored;

- having certain autism organisations describe us as 'thieves' of the 'real person' supposedly hidden underneath, or as destroyers of families, or 'brain-damaged', or defective in some other way;

- having people tell us how "weird" we are, or asking "what planet do we come from", and even suggesting we should go back there;

- cringing as yet another autism-negative article appears in the news;

- fearing for our personal safety in the face of some people's hate-filled attitudes.

All of these, and more, are daily examples of how people's attitudes cause us suffering.

      ii) Other people's treatment of us - There are many ways we are actively 'managed' that induce suffering. Among just the most obvious are -

- forcing us to make eye contact or talk or move in 'non-autistic' ways;

- stopping us from stimming or following our special interests;

- suppressing any other facet of our being that is obviously autistic;

- inflicting 'therapy' on us that is boring, meaningless, frustrating or even harmful or dangerous;

- incarcerating us in institutions like the Judge Rotenberg Centre or other psychiatric facilities or even jail;

- forcing us into counselling or psychotherapy that ignores our autism and blames us for our problems;

- abusing or bullying us as children or even adults;

- laughing or jeering at us;

- ridiculing or belittling us;

- rejecting or excluding us;

- firing or refusing to hire us or bullying or harassing us in the workplace;

- refusing to give us the support we need to access education.

      iii) Other people's social interactions with us - Our difficulties interacting with others are the result of the above two 'external' factors - others not understanding us or behaving well towards us - combining with various 'internal' factors such as lack of ability to read non-verbal clues. The results can only be painful. Bewildered and hurt, we often reel away into semi-reclusiveness. Or we are cold-shouldered and excluded from social interaction - which doesn't help at all, we never understand why, and it just hurts.

So in writing this, I've realised that, though there are far more 'internal' causes than 'external', the external ones are SO big, SO influential, they inevitably interfere with the internal ones. People don't understand us, don't provide support or the knowledge or skills we need, leave us to flounder and fail, or treat us in ways that actively make our lives much, much worse. Hence, whatever the apparent cause of our suffering, the primary cause is the attitudes and practises of others. And if these external causes of suffering could be reduced or eliminated, then so much more energy could flow into providing the practical support and accommodations needed to overcome the internal causes of our pain and suffering. It truly is all about attitude, and the behaviour that follows from that.

That Autism 'Suffering' - Part Two

In this next part of my investigation into the 'suffering' of autistics, I look at the things autistics themselves - or in some cases the more objectively observing of their parents - put forward as the actual causes of autistic pain and suffering (as opposed to what many non-autistics believe are the causes), along with possible ways non-autistics can support and help us.

There are quite a number of them, and in this post I'll look at the 'internal' causes, those  that arise out of our 'different' way of being, and/or are closely associated with autism.

      i) Communication problems - especially if we're non-verbal, but even those who can speak sometimes have difficulties. We might 'lose our words' under stress, not be able to find the right ones, struggle to process and respond quickly in conversations, or just find it so much easier to write than speak. The use of computers, other communication devices, sign language or writing, along with simple patience on the part of others, would go a long way to help.

      ii) Auditory Processing Disorder - This is part of i). If what we hear sounds distorted or garbled, and it takes us ages to 'decode' what's been said, then we can feel stupid, embarrassed and hurt by others' reactions to this. Others can help us by speaking clearly, minimizing background noise, and waiting patiently for our responses.

      iii) Executive dysfunction - basically, we can't get our lives together. The results can be disastrous, and extremely distressing to us. We will flounder through life and ultimately fail at it - or at least feel like total failures - unless those around us help us learn how to organise ourselves. This is important not just for children, many adults on the spectrum could also do with such support.

      iv) Emotional Regulation - Many autistics have difficulty identifying, expressing and/or controlling their emotions. This can cause a great deal of suffering, especially if it triggers public embarrassment or hostility. There are various methods of helping autistics with our emotional states, including emotion charts, meditation or medication, but needed first is an understanding that this isn't a case of us just being 'spoilt brats' or 'cold and unfeeling', but a real and often painful challenge.

      v) Fear of change - Just about every autistic I know gets distressed by change. Something about our minds is too rigid to cope with it. Visual aids of various kinds are helpful, as is lots of preparation and planning beforehand, and being taught the 'Plan B' approach. Ultimately though, only repeated experience will help us develop the skills and maturity to get through changes.

      vi) Lack of social skills - Our lack of any 'intuitive' knowledge of how to interact with others, combined with inability to read non-verbal clues, means frequent social blunders. The resulting hostile reactions often cause us considerable distress. If others grasped that we are socially 'blind', and certainly don't intend to offend, and instead of condemning us quietly advised us on what, and what not, to say or do in situations, and (most importantly) why, it would assist us a great deal.

      vii) Poor Impulse Control - Impulse control seems to be a problem for many autistics, and can cause much suffering, whether it's through rushing headlong into possible danger, saying things without thinking, being unable to restrain ourselves from 'compulsive' behaviour, or even 'burning our bridges' because we've made too many mistakes, or plunging into disaster in some other way. Self-regulation is a very important skill, and one we usually need help in learning. It's difficult to learn it without such support - I speak from personal experience here.

      viii) Sensory overload - this one is tricky. The immediate causes are outer - i.e. the sensory input - but the ultimate cause is internal, i.e. our senses turned up to the max. The difficulty with managing it is twofold. One, heightened senses can also be wonderful, such as when listening to our favourite music. Two, not all the sources of over-stimulation can be avoided. It's pretty hard, for instance, to stop birds tweeting, dogs barking, or babies crying. Much relief can be found however. For example autistic students and employees could be allowed to wear sunglasses, caps, etc, in the classroom or workplace, lighting can be adjusted, and so on. Acceptance by others of the desperate need for such accommodations is crucial.

      ix) Meltdowns - These can cause us a great deal of suffering, both in the lead up to them, and in the actual experience - not to mention other people's unsympathetic or hostile reactions. We don't want them to happen, but can't always prevent them. If others understood the difference between meltdowns and tantrums, and did their best to assist us in eliminating the causes and creating safe, quiet places we can go to be alone and recover, it would go a long way to alleviating our suffering in this area.

      x) Gut/dietary problems - A lot of us have sensitive digestions. If an autistic person is having lots of diarrhea, constipation, etc, and constantly feeling or seeming unwell, then it may be worth trying different diets. Note though that even that if we don't eat, say, gluten, this doesn't mean we will magically not have autism anymore. It just means that if we're not sick, we will have more energy to deal with life and its challenges.

If my solutions to our suffering seem glib, I don't mean them to be. I know that they usually entail a good deal of hard work, on the part of the autistics themselves, and/or their parents. But what does strike me is that a change of attitude combined with practical help will alleviate our suffering far more, and far quicker, than any hyperbaric chambers or bleach enemas or worms or any of the other and often ridiculous 'cures' being touted by the autism industry.

In my next post, I will examine the 'external' or 'outer' causes of our suffering.

That Autism 'Suffering' - Part One

A while back, a friend of mine was sent an email by an autism parent, angrily reproaching him for trying to stop autism parents doing certain treatments on their autistic kids. He claimed, as many such parents do, that he and others were simply trying to "stop their pain and suffering".

This idea of autistics ‘suffering’ is something that bugs me. I feel it needs more attention. It's a big issue, I've realised, so I'm going to split it into three parts.

In this part, I ask what is it that parents (and all the autism 'experts' and autism industry that caters to them) are seeing, when they say their child is ‘suffering’? (And please note here, I am NOT talking about those who use various therapies in service of what I call the 'maximisation' approach, but rather those who form what is not-so-fondly known as the 'curebie' brigade, who take the opposite or 'normalisation' approach.)

Firstly, there seems to be an assumption on the part of these parents (and others) that simply being autistic means an individual is ‘suffering’. Sometimes they appear to think this is so through having observed some aspect of their child's behaviour, e.g. frequent crying, meltdowns, or the child's frustration when they can't communicate. So they think, "well, this is caused by my child's autism, therefore if I can get rid of the autism, I will relieve their suffering." That autism is fixed at the genetic and neurological level either isn't understood or isn't accepted, nor do they seem to consider that there might be specific, removable causes for that behaviour, i.e. some other (and easier) way to alleviate their child's difficulties that doesn't involve attempting to remove their autism wholesale. They 'have' to eliminate the autism, they believe, and so anything and everything that might achieve this is okay. Some of what they do is patently useless (hyperbaric chambers? worms? really?), other stuff alleviates some distress in some cases, e.g. gluten free diets (though only, it seems to me, where there are definite physical signs of ill-health), but don't rid us of our autism, per se. Yet other treatments, such as bleach enemas, are exponentially more harmful. Parents who take this approach often seem to feel either that a 'temporary' suffering is necessary to a long-term 'solution', or - more drastically, in some cases - that they'd rather see their kid dead than autistic.

More often, however, the underlying thinking seems to run like this - "If I was autistic, I'd be miserable. Therefore, they must be too, and I have to do everything possible to eliminate the autism, so they can be happy." The parent thinks, for instance, that a child who spends a lot of time alone must be miserable, because they would be, if they had to be alone that much. That we might have different needs, that we might not only be perfectly happy alone, but in fact need large chunks of solitude in order to 'recharge' our emotional /social/ physical batteries, so we can go out into the world again, never seems to occur to them. Or if it does, they take that somehow as further 'proof' of what's 'wrong' with autism.

These above beliefs, in turn, combine with another belief - or simply an assumption -namely that autism itself is a bad state. It's 'abnormal', and therefore 'of course' those with it 'must' want to be relieved of it. Because being 'normal', i.e. NT, is not merely superior, but the only 'right' way to be, and only 'normal' people can be happy. Right?

Wrong.

And yes - before anyone points it out - I do accept that many of these parents are simply ill-informed, tragically caught up in the whole 'defeat autism' thing, and are genuinely just trying to do the best they can for their child. I know this. Nor am I denying that being autistic often means experiencing pain, frequently, and rather a lot of it. I wrote a post  here on just that recently. However, I believe that our pain is not through being autistic per se (i.e. the different way we think, feel and react to the world, which forms the core of our autism 1), but through difficulties that arise out of that different perception, or 'co-morbids' associated with autism, and/or - most especially - other people's reactions to our autism. Yes, it can be difficult to separate out all these things, but I'd like to try, so as to tease out the real causes of our 'suffering'. They seem to fall into two main groups, and in the next two parts, I will examine those.

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1 It has been said (though I can't remember by who) that left alone in a room, our autism 'disappears'. That is, we're okay until we have to interact with the world. It's then the pain and suffering starts.

On 'Soul Loss'

Recently I was (re)reading one of my favourite books, Julia Cameron's 'The Vein of Gold', and happened upon a passage about a psychological phenomenon called, in the shamanic tradition, 'soul loss'.1 It happens when we are the recipient of various kinds of negative experiences, especially of the more insidious kind, such as the harsh criticisms designed to squash any creativity or non-conformity in children. Given various labels (dreamers, flaky, unrealistic, even selfish or stuck up), or simply having our talents denigrated and belittled, we set aside our dreams, and lose touch with those parts of our true selves. And it can often be difficult to get them back; every time we think of doing something creative, the voices from our childhood surge back up - "You think you can draw? (Or sing, or write, or dance, or...) Who are you kidding?" Paralysed by this internal critic, we're not able to believe in ourselves or our creativity, and so it's suppressed, souring our lives. If the belittling or sidelining of one's talents has continued into adulthood, eg from unsupportive partners and friends, it's even harder to believe in your own abilities, and stay in touch with your creativity. Many try to 'fill in the gaps' in their sense of self with various substitutes, including drugs, alcohol, sex, relationships or workaholism, or they take out their frustrated desires on those around them. The main object of Ms Cameron's books is getting in touch with that creative self again, and healing it.

But on reading her words, it occurred to me that we autistics must also experience soul loss. Think on it. We are routinely denied a full and true expression of our autistic selves. Autistic children frequently have their stims and other openly autistic behaviours suppressed, often ruthlessly. Even as adults, our mannerisms are often made fun of. Both as children and as adults, we are forced into the straitjacket of 'normality', and are robbed of any authentic sense of self as autistics. Not to mention that almost daily, we hear the messages that autistics are terrible in one way or another. Words like 'epidemic', 'stolen', 'tragedy', 'brain-damaged', etc, are used to describe us. The media regularly publish or broadcast articles and news items that, whatever their actual words, almost always convey a message of fear and loathing for the 'modern scourge' we represent, usually with a heaping of sympathy for the 'poor parents' who have to 'put up' with us. Professionals regularly release news that they have found yet another possible 'cause' of autism, and/or discuss us using the language of pathology and disease, all the results of their research being structured so that we are the ones with the 'lack' of something 'normal' people have. Commonly repeated ideas of autistics include that we lack any empathy or sensitivity, that we 'don't want' the company of others, and are incapable of love. Or that we are lacking in intelligence and awareness (if classic or 'Kanner's' autistic), or are all computer nerds and hackers, if Aspergers.

We are put through 'treatments' that would be considered abuse if done to anyone not autistic, incarcerated, or abused outright (that is, without even the excuse of 'treatment'), and even murdered, for the 'crime' of being autistic. And even if our abusers and murderers are brought to justice, they either get off with the proverbial slap on the wrist, or all the sympathy is for them, not us. We are laughed and jeered at, isolated and rejected, yelled at and criticised, bullied and told in a million small and large ways that we are worthless or inferior in one way or another. We are, even now, after years of autistic activism, routinely not consulted, even as adults, on what we want, and often not included in running autism organisations that supposedly are 'for' us. In short, we are treated as if we're not quite human, not entitled to even the most basic of human rights, fit only to be 'treated' and 'managed' by the 'real' humans, and ultimately to be eliminated.

So why wouldn't we experience 'soul loss'? How, really, could we avoid it? Over and over again, I hear/see autistics talking of their pain, their confusion, their floundering through the world, their feeling of 'lack' or 'wrongness', their struggle to achieve some sense of self-esteem or even self-coherence. They daily dump on themselves, wonder if they'll ever 'get it right', hate themselves for not being able to do what 'everyone else' can do with such ease, for having to struggle so hard with just about everything in life. Sometimes they believe the negative stereotypes for lack of any better information, but just as frequently it seems the state of their lives, their lack of a coherent sense of self or even a sense of purpose, is to blame. For many of us, private tears and shame are an almost daily experience. I have seen so many autistic individuals broken by their experience of life, wondering why they should even bother to continue, or trying to 'fill those gaps' in one way or another.

The only way I've seen this even begin to be overcome is by these individuals meeting and talking (even just online) with other autistics with a more positive view of themselves and of being autistic. Not everyone needs to be some hot-shot autism activist or advocate, but we can all extend a hand of sympathy, and frequently do. I have seen autistics come into groups flagellating themselves, and within a relatively short while, having experienced the help and support and understanding of others, they move towards a more positive outlook, or at least stop whipping themselves so damn hard. Even those who've been part of that support and community for ages can be in need of reinforcement when life assaults them particularly badly, as it does to all of us now and again. Community is not the whole answer of course, but it's a very important beginning. I firmly believe that it's only by way of our autistic communities that we can reclaim those bits of our true selves shattered by 'soul loss', and begin to heal.

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1 Pgs 78-79, The Vein of Gold, by Julia Cameron, Pan Books, London UK, 1997.

Things I Don't Understand - Number Six

I don't understand prejudice. I really don't get why someone thinks they are better than another, because of their race, religion, sect, gender, sexuality, nationality, tribe, language, culture, sub-culture, educational qualifications, social class, neurology, degree of able-bodiedness, or whatever. So nor, consequently, can I understand or support all the 'isms' that arise out of such prejudice, when one group gets power over another.

Sure, people vary in their size, their physical strength, intelligence, education, wealth, etc. Another person's culture, language or appearance can be very different, and seem strange. They may do things you don't approve of. They may even have 'isms' of their own within that culture you'd like to see eliminated, such as women being oppressed. But to say that because of that, the members of that group/culture/etc are somehow 'inferior', and deserve a lesser status than you and/or the group/culture/etc that you belong to, is nonsensical.

I've somehow known all my life, long before I was able to put it into words (and I'm not sure I can totally do so even now), that every human being is essentially equal. Not exactly the same - we differ of course, as I said above. But beneath all that, is something, a spark, a common thread, a 'human-ness', whatever it is that forms the nucleus of our being. I tend to call it the human spirit or soul, but others will call it by other names. And we all have it, without exception. Even the ones thought 'unreachable', or 'too damaged', the ones who seem a threat, or 'too different to understand'. I've looked into the eyes of many considered 'other' or 'undesirables', and it's there. (I've also looked into the eyes of the dead, and seen that essential spark gone, but that's another matter.)

Perhaps it's the aspie in me - from just a young child, I paid little attention to such 'unimportant' things like peoples' status or position. There were undoubtedly tons of little signals which I missed, and which helped others to locate themselves in the social matrix, to know who they had to kowtow to, and who they could lord it over. Children, especially girl children from families of no great social status like myself, were pretty near the bottom of that matrix. I was oblivious to all that. I protested the privileges my brothers and father got. I couldn't for the life of me understand why everyone thought boys were so wonderful. I didn't think it remarkable that some of my cousins and schoolfriends were Maori, or think they were somehow 'lesser' human beings for it. And while I understood that adults had power over children, and knowledge and experience I lacked, I didn't see them as intrinsically superior to me because of it. And so on. I have met many other aspies/auties who share the same lack of awareness of social distinctions, the same lack of prejudice.

Or perhaps it's because I'm of the post-war generation. Growing up, the Holocaust and its horrors were very recent history to me, a glaring example of racism gone mad, and of how thinking oneself 'superhuman' actually made people behave in subhuman ways. I'm also old enough - just - to remember President Kennedy, how wonderful everyone thought he was, the hope for a new world he engendered, and the shock of his assassination, which reached us even here in little ole 'Godzone' at the bottom of the world. The 'revolutionary' events and phenomena of the 60s - the Vietnam War and anti-war protests, the civil rights movement and Martin Luther King's assassination, and even the music of pop groups like the Beatles, were the background to my childhood, while events like Watergate and movements like feminism and gay rights and the 'flower power' of the hippies influenced my adolescence. When I was about fifteen or sixteen, I wanted nothing more than to grow up to be a hippie, and when my father sneered at my 'tatty' jeans, I didn't get why. The prevailing idea was that our generation was breaking down old structures, and creating a 'brave new world'. Prejudice was anathema, to be discarded along with other 'old fogey' ideas and social structures.

Or perhaps it's both of these factors acting together - or neither, but simply something that's part of me, of who I am. There are plenty in my age group, and younger, who didn't get the memo about the revolution, and who are as racist, sexist, homophobic, etc, as any of the older generation were. And I know that there are aspies/auties out there who are prejudiced, and who spout that prejudice at any opportunity. I've met some online (thankfully only a few, in a forum I no longer visit) who rant about Obama and immigrants and blacks, or see being gay as a 'sin', etc, etc. They do exist.

So I don't know why it is, exactly, I lack any ability to feel prejudice. All I do know is, I don't understand it, I don't understand anyone thinking themselves a superior type of human being, and I will never, ever, ever support it or knowingly perpetuate it. Ever.