Hope, Harvey Milk and aspies

 Recently I was watching a DVD of the film ‘Milk’, about Harvey Milk, the first openly gay elected public official in the USA. It’s a great movie, and I’d recommend it to anyone. But what particularly struck me, near the end, were the words that Harvey had recorded on tape, to be played ‘in the event of my assassination’. (Which of course, is precisely what happened.) Anyway, this is what he had to say –

“I ask for the movement to continue, because it’s not about personal gain, it’s not about ego, it’s not about power. It’s about the ‘us’s’ out there. Not just the gays but the blacks and the Asians, the seniors and the disabled. The ‘us’s’. Without hope, the ‘us’s’ give up. And I know you can’t live on hope alone. But without hope, life is not worth living. So you, and you, and you, you got to give them hope. You got to give them hope.”

You got to give them hope. Back then, young (and not so young) gays – and lesbians, and blacks, and all the minority groups - were killing themselves, because they had no hope. Sometimes, they still do. But there’s another group who, unknown to many, have also had a high suicide rate. I mean those on the autistic spectrum. I’ve felt desperate enough myself at times – if I didn’t, it was because of some basic inhibition against it in my nature, rather than because my life suddenly looked like it was going to change for the better.

But it’s not just about suicides, I realized. It’s about what kind of world we want to live in, what kind of values we live by, what kind of people we want to be. Do we want a world in which every person’s human rights are respected? Do we believe every human being is equal, worthy of respect, worthy of being treated like a human being, regardless of what race, ethnicity, religion, gender, sexual orientation, physical disability, mental illness, developmental disorder or neurological difference they have?

Or do we want a world of division, of hatred, of prejudice, of judging and separation, of ‘apartheids’ of all kinds? Do we want a world where people are treated as ‘lesser than’ and abused by individuals or ‘the system’, simply because they are ‘not like thee and me’? Because something about them – whatever it is - is different? Those who have studied history have only to look to Nazi Germany or South Africa, to know where that ultimately leads.

It’s not necessary to join any political or social movements to be a decent person. You simply have to recognise the basic equality of all human beings. Ultimately, in my eyes, this is a spiritual principle, as all humans are beloved equally by The Divine Power, but you don’t have to be a conscious believer in God either to do it. You simply have to choose – do you go for divisions between people, and all the hatred, prejudice and oppressions that follow on from that, or do you go for inclusion and reaching out to those ‘others’?

What kind of person do you want to be? What kind of world do you want to live in? That’s the real question. It’s your choice.

Something That Really Bugs Me About Most Autism Articles in the Media

I've clarified something that really bugs me about most articles about autism in the mainstream media (not our own of course). It's that they never, or hardly ever, interview anyone who's actually got autism. Can you imagine doing an article on, say, living with a kid with diabetes, and not interviewing either the kid ( if old enough) or an adult with diabetes? Or cancer, mental health issues, spina bifida, etc etc? Indeed, just about any condition you name, they will always do their best to interview those with the condition, or, if it's about kids and they're too young, to interview some adults with it. In other words, they go for journalistic balance.
BUT NOT WHEN IT COMES TO AUTISM. The most I've ever seen is the occasional sidebar, usually with someone like Jen Birch. (She must get sick of being interviewed by NZ media, every time autism or aspergers comes up!) Otherwise, it's like there is this great gaping hole in their articles.
I can only presume it's because of the overwhelmingly negative image that autism has, and which they continue to foster. I'm unsure whether those on the spectrum are assumed to be too 'handicapped' to be able to communicate their position (even those who are obviously verbal, and adults), or whether they aren't seen as having a valid viewpoint or position to discuss. Either way, the image presented is either of children who will grow up into remote, uncaring, selfish 'weirdos' and semi-automatons (with spots, BO, thick glasses and pocket protectors perhaps?), or, if 'lower functioning', someone to be put into 'care' of some kind, and forgotten about. Certainly not anyone the average person would want to know, or make a connection with, or learn about the experiences and viewpoints of.
I could say 'well that's their loss', but in truth, it's ours. Through such attitudes being common, and commonly perpetuated by the media, we continue to be marginalised, dismissed, rejected, stereotyped, bullied, harassed, shut out of employment, and generally excluded from so much of life, and the world. We end up lonely, bruised in spirit, often bitter and cynical, with mental health issues like depression and anxiety disorders, not to mention frequently living in poverty, or homeless. In short, we are suffering, and while one article alone doesn't cause this, it certainly won't help either. If only someone would do a REALLY balanced article, one that puts the other side of the story, and starts to demolish some of the myths, eg that we are incapable of love, have no capacity for empathy, and no feelings.
If only. I must confess, i'm not holding my breath waiting.

Autism : Love as a One Way Street?

Recently I read an article in the latest issue of the New Zealand magazine ‘North and South’, called “Autism: A Mother’s Story”, also labelled, on the cover, as “Autism: When Love is a One Way Street”, about a young autistic boy and his parents. I was determined not to let this latter put me off – it was obviously done to sensationalise and sell copies, right?

At first, it seems, well, fairly ‘well-balanced’. This is a mainstream NZ publication after all, and the words ‘monster’ and ‘stolen’ are nowhere in evidence. And it’s sympathetic… But. A more discerning read reveals underlying biases: –

1) The sympathy is for the parents, especially the mother. Nowhere is there any sympathy for the child. When the mother explains, for instance, that she thinks his language delays are due to auditory processing problems, nowhere is there any hint that this, or anything else, might be a source of frustration for the boy, or for any autistic person for that matter. It’s all about how hard things have been for the mother, how ‘heroic’ the parents are, etc etc. (I’m not saying that it isn’t difficult bringing up an autistic child, but plenty of testimony has now emerged that life is damn hard for the growing autistic too.)

2) Much is made of the autistic child’s ‘inability’ to show love and affection. (Translation: he doesn’t show it how we expect, so therefore he doesn’t feel any.) Yet despite acknowledging that the boy “is capable of affection and loves hugs and the sensation of skin on skin”, they still bang on about ‘love being a one-way street’, pointing out that he sometimes calls his mother “by the name of one of his therapists as though the distinction between mother and therapist is lost on him”. Or, could it possibly be, that he simply doesn’t understand or remember names too well? And could it be that he does love his parents, but has no understanding that this can or should be expressed, let alone how? The underlying assumption or implication seems to be that autistics don’t have feelings like ‘normal’ human beings do, that they are cold, callous, selfish and uncaring.

3) Autism is still depicted as a ‘terrible’ thing. On the first page, we are told how, when she was told her son had autism, her reaction was that, having as older parents had all the tests to reduce the chance of a disabled child, “now they had a child with one of the worst of all”. Unquote. Sigh.

4) There’s no understanding that things might develop or change as the child grows older. The assumption is that the child will always be this way. (He’s seven!) Yet even a little research would have told the journalists that we on the spectrum are late maturers (often very late), and continue to grow our capabilities well beyond the usual age at which those of NTs become ‘fixed’.

5) There’s also no real understanding that autism is a spectrum varying in its degree of severity or its range of symptoms, and certainly no mention that at least some parents don’t see it as a ‘tragedy’. Or even that some parents are on the spectrum themselves.

6) And of course there is next to no mention of autistic adults. We might as well not exist, as far as this article is concerned, except in the sidebar about a different child, whose father is related to the now deceased author Janet Frame. And there they refer to her probable HFA or Asperger’s as “mental illness”. I kid you not.

This same family were the subject of a previous article in the NZ Listener in 2007, when the boy was only three. It had much the same tone, the only thing really different was that the family were then at the beginning of a whole host of therapies, which, the mother now admits, were “useless” and “a major scam”. (Oh, and the Listener article had a sidebar on Jen Birch, not the media’s first, or last, interview with her. I have immense respect for Jen, but the way the press uses her as a ‘go-to’ person for AS, you’d think she was the only adult on the spectrum in NZ.)

So my overall impression? That it’s ‘business as usual’ in the media regarding autism, it’s still ‘Awful Autism’, autistic children are still ‘cold’ and ‘heartless’, have no real feelings (and therefore we needn’t worry about them), they’re the last sort of child any parent would want, and autistic adults are invisible. Autism is getting ‘air-time’ and ‘page-time’, yes, and that’s good in a way, but there’s still little real understanding of autism, and the perspective of the autistics themselves is still missing, still not valued, not even truly recognised as existing. And this doesn’t look like changing any time soon.

Sigh. And double sigh.

(Quotes from “Autism: A Mother’s Story”, North and South magazine, April 2011 issue.)

Article Number Four!

This one's kind of for fun really, it's about cake baking.

It's at http://www.suite101.com/content/how-to-bake-a-perfect-cake---without-packet-mixes-a358912

Article Number Three

Okay, I'm on a roll here. Article number three went up yesterday. It's about cooking and baking without wheat or dairy, and is the sum of the better part of thirty years experience and experimenting with this. I feel it's something many aspies might be interested in. Note that I'm talking about wheat free, not gluten free, baking.

Anyway, here it is, at  http://www.suite101.com/content/look-ma-no-wheat-or-dairy-a357450

Aspie Rambling on and on (and on and on...)

It’s been brought home to me lately that we aspies tend to ramble a lot. Someone asks us a question, or makes a comment, and it sparks off a train of thought in our minds, and we’re away. We rabbit on and on. We digress. We ‘perseverate’, we go off on our own tangents, talking about what interests us, what stray thoughts are passing through our minds, and don’t stop to notice the other person’s reactions, consider their feelings and needs, or even whether we’ve really answered the question or not. The result is something like a good friend says -

“Like if someone comes to you and says, “Let's go eat out. Where would you like to go?" Instead of answering that question, which is a basic question, you go on and on about where you ought to not go, and how one time you went to this one place, and it was awful, and you don't like this, or that, and while you're on the subject you don't like this or that sort of activity, either. And really, how important is eating anyway? Why do people eat?
You see, now you're not even on the subject, you didn't answer the question, give any advice, or really share any important info. Your intent was not to upset the person asking you to lunch, but that is what would happen."

The way I see it, there are three types of ‘ramblings’ we tend to do.

1) The ‘TMI’ ramble. In this case, in answer to the above question, we might start out saying something like “Well, ‘X’ café has nice salads…” If we stopped there, things would be fine. But we feel compelled to add “…and restaurant ‘Y’ does nice bagels, but they aren’t gluten-free; that little coffee shop down on the Main Street however does do some gluten-free stuff, while restaurant ‘Z’ has…” and on and on. Though we’re still ‘on topic’, it’s as if we feel we have to give a review of every eating place in town! The usual reaction is a blank stare indicating the other person is overwhelmed, or an irritated “make up your mind!”

2) The ‘Negative’ ramble. The above quote from my friend is a good example of this. We say all the places we don’t like, all the foods they have we can’t or won’t eat, how the music is too loud at one place, and the chairs uncomfortable at another, and yet another the service is bad, etc etc. The usual response I get to this is a grumpy “well is there anywhere you do like?!”

3) The ‘Completely-Off-Topic’ ramble. This is also happening in the above quote. We may start out talking about coffee shops and the like, but then we remember a bad experience we had in one, or a thread of thought we were following the last time we were there, and we’re off. Bunny-hopping from one topic to another, following what seems perfectly logical connections to us, but not to those we’re with. Again, the other person is likely to be overwhelmed, irritated, or even upset. They may even feel like we don’t really want to go to lunch with them, and that this is our way of avoiding it, when we didn’t intend that at all.

I have to confess, I have been guilty of all three of these, and I suspect if we were honest with ourselves, most aspies have been. I believe this phenomenon of ‘rambling’ comes from a capacity within us that can be both an asset and a liability.

It’s an asset, becos it’s the source of much of our creativity and originality of mind. We follow our own path, paying little or no regard to such limitations as fashions, conventions, traditions, getting along with the neighbours, workplace politics, sucking up to the boss to get promotions, or the straight-jacket of the ‘it-can’t-be-done’ mentality. We have a thought of “I wonder if…” or “what would this look like…?” and go with it, for however far or long it takes us, producing amazing inventions or far-reaching scientific discoveries; we listen to the depths of our own souls and minds and produce paintings, books, songs, etc, that come from our unique viewpoints, and not from following what is ‘fashionable’ in the world of contemporary art, literature, or music. We go for what appeals to us, and leave others gasping in our wake.

It’s a liability, however, in the social arena, because it’s the source also of much of our inability to get along with others – even, at times, other aspies. We bore, we irritate, we bewilder and annoy. Occasionally, we infuriate, and people cut off all contact with us. They think us boring, stupid, snobbish, weird, arrogant, rude, and/or selfish. We can be misunderstood even by other aspies, who sometimes aren’t any better at understanding where other aspies are coming from than NTs are, and make assumptions about the motives for this behaviour which would probably astonish the offending one, if they knew them. It is, I believe, the source of a great deal of misunderstandings and quarrels and upsets, in both aspie-NT and aspie-aspie communications.

And of course, in its origins, it all boils down to one thing – that old lack of ‘theory of mind’ - ie, how much (or more likely, how little) we understand about how others feel or think, what their likely reactions are to what we’re saying, in short ‘where others are coming from’, and being able to ‘put ourselves in their place’. We all suck at this, it’s part of being aspie, though some of us get better as we get older. I’m feeling more and more that the theory of mind issue is our biggest problem, and the one that most gets in our way in our dealings with others. It is, I feel, at the base of many of our social interaction struggles. Some seem to think it’s our lack of social skills, but if we don’t have theory of mind, we struggle to understand even why we should develop those skills. We don’t ‘get’ superficial conversation, or the rules of ‘politeness’. We don’t need them, so we struggle to see any point to them, and hence struggle to develop them. Some point-blank refuse to even try. To us, it might as well be hieroglyphics (in fact, many of us would be more interested in the hieroglyphics!). Yet to others, strange as it may seem, they are both necessary and wanted.

So here is my thought – that we allow ourselves to ‘go for it’, when alone, when working, when ‘doing our own thing’, and being creative. BUT when trying to ‘socialize’, to communicate and interact with others, we follow one basic rule – DON’T RAMBLE. Say something brief – and then SHUT UP. If the other person needs or wants more info, they’ll ask.

If you want to take it a step further, and hone emergent social skills, ask yourself one simple question – did I actually answer their question? Or, if it was a comment or general conversation, was my comment actually ‘on-topic’? It’s possible, in this way, to pay attention and stop ourselves when we feel that we’re about to ‘go off’. Generally speaking, if we’ve spoken for more than ten seconds in response to another’s question or comment, we’ve probably gone on too long, and it’s time to stop! This can apply online too – before posting an answer on Facebook, Twitter, a forum or message board, etc, go back to the original comment, question or post, and ask yourself – have I answered it? Or have I waffled on about something else entirely?

The rules of social interaction are too complex and too ‘non-verbal-cue-dependent’ for us to ever truly and entirely ‘get’ them, but I believe it’s possible to improve at least a little, or at least not to seriously bore, overwhelm or irritate others, through using simple rules like these.

ASD Reactions To Drugs

A recent discussion at my local aspie gathering, and a lot of anecdotal evidence, suggests that we on the spectrum react very differently than NTs do, to a lot of medications. Sometimes we don’t react at all to a drug. Some drugs we react strongly (and negatively) to, and with yet others our reactions are totally different, even the reverse of, what’s ‘expected’, eg drugs given to calm us, making us more ‘hyper’ than ever. We often require much lower amounts than what is considered the ‘normal’ or ‘standard’ dosage.

Some doctors and psychiatrists, those who specialise in or have experience dealing with those on the spectrum, are apparently becoming more and more aware of this, and take it into account. But your average GP, especially if they have little or no experience with or awareness of people on the spectrum, will often express disbelief or even scoff at the idea that a particular drug could cause a certain reaction, or need to be lowered in dosage, simply because the patient is on the spectrum.

For instance, one man, used to taking a very low dose of a particular anti-depressant overseas, found when he first moved to New Zealand and asked his new doctor for a similar prescription, the doctor expressed disbelief and amazement that such a low dosage could have any effect at all – it being half what he considered the ‘absolute minimum’. Yet this man had found through experience and the support of a former doctor, that this was all he needed to keep himself emotionally stable.

Yet when you think about it, it makes perfect sense. It’s now a proven fact that we have a different neurological pattern, our brains work differently to those of NTs. More often than not, we have a high degree of sensory sensitivity, and many of us have multiple food sensitivities or allergies, and highly sensitive digestive systems. In short, our brains, our bodies and biochemistry, are different, so why shouldn’t we react differently to what’s put in them?

My own list of ‘no-no’ drugs is moderately long – aspirin, morphine, Tramadol, anti-histamines, codeine, prednisone, amitriptyline, sleeping tablets, Lipex (for high cholesterol), and the anti-inflammatory Diclofenac, aka Voltaren. All of these I have had negative, sometimes extreme, reactions to. Others report even longer lists, and even more extreme reactions.

So please, those on the spectrum, and/or who have children who are, don’t let doctors or indeed any so-called ‘expert’, bulldoze you into accepting dosages of any medication, for you and/or your child, that you don’t feel are ‘right’. If you can educate them, do so. If you can’t, stand firm anyway. You know yourself/your child best, not them.

And doctors/psychiatrists, please listen to your patients on the spectrum, when they tell you that a particular drug doesn’t work for them, or a parent of an autistic child tells you this. Consider prescribing much lower doses than usual, and proceed with caution. Be prepared for some medications not to work at all, to have the opposite effect to that intended, or to have ‘side-effects’ way beyond or different to ‘the norm’. It might be a good idea to record the different reactions you encounter, for future reference.

In short, everybody take care. Medication is a minefield for those on the spectrum.