The Issues of Older Autistics

Recently one of my favourite bloggers decided to stop writing her autism blog. Her reasons are many, but one of them is that she feels the autism rights movement is too youth-orientated, and that as an older autistic woman she is unable to identify with the issues that currently preoccupy the movement.

Her reference is to the US situation, and I don’t feel autistic advocates here in New Zealand are quite so focussed on ‘youth issues’, yet in the wider ‘autism community’, it certainly seems to be like that. Children used to be, and to a large extent still are, the focus of parent-led groups, government agencies, the education system and the media. But now as the supposed ‘tsunami’ of autistics are coming into adolescence and young adulthood, the focus is also on such issues as transitioning to high school, or from there to university or polytech, social and relationships skills, how to conduct oneself at interviews, flatting etiquette, budgeting, etc.

Now I don’t want anyone getting me wrong. I’m not saying that young people on the spectrum don’t have major issues that need dealing with. Quite the contrary. But the issues of older people on the spectrum are largely being overlooked and unaddressed, in fact not even acknowledged. The prevailing thought (if any thought is given to us at all) seems to be “well they’ve managed up till now, so they must be all right”. Not so.

Some time ago, another autism blogger of the ‘older’ generation was saying how a friend had referred to her as ‘the last of the wild autistics’. By this she meant those of us who grew up in an era when there wasn’t even the diagnosis out there to find. Who experienced decades of adult life lost in a kind of howling wilderness, being misunderstood, rejected, reviled, pushed into at least pretending ‘normality’, and generally dumped on for being ‘different’. Who agonised and stumbled and bumbled their way through that wilderness somehow, learning a lot along the way, but paying a dreadful cost for it. And now we find ourselves in a peculiar situation, one that may never be repeated. We’re too old for, and usually don’t need, the kind of help being offered to younger autistics. But that doesn’t mean we don’t have other problems. The following is an attempt at listing what I see as the issues facing older autistics.

1) Emotional ‘Baggage’. We may have gained at least some social skills and awareness, but we all carry scars from having learnt them the hard way. Decades of ill-treatment, for instance, and/or of not recognising that we are being ill-treated till it’s too late, have often left us so hyper-sensitive, we see insults and rejections even when they aren’t there – or rather, we’re so unsure whether they’re there or not, we angst over it endlessly – sometimes for years afterwards. Which adds layer upon layer of confusion, bewilderment, shame, embarrassment, anger, resentment, self-hatred and low self-esteem to the pain we already feel. Some of us have become semi-recluses because of this. Others just go through life with a ‘chip on the shoulder’, which others don’t understand, blaming the individual, when in fact it’s the decades of undiagnosed autism that is the problem.

2) Health Issues. Like NTs of our age group, we are ageing, becoming infirm, developing health issues. Unlike them, we struggle to communicate to doctors and nurses our special needs, how we are hyper- or hypo-sensitive to pain or touch, for instance. Or how we just can’t eat certain foods, no matter how many times we are told it’s essential for our health to have them, or that the tests say we ‘don’t have an allergy’. Or our trouble with auditory processing issues, which for at least some of us seem to worsen as we get older, or how our ‘co-morbids’ complicate our lives. And our health issues are often worse than people our age, due to the severe levels of stress (and poverty) we’ve experienced. And then there’s the thought of what will happen to us if we reach a point where we can’t look after ourselves anymore. My own personal nightmare is the thought of being forced into some old folk’s home – where I would have no room to paint or write, and no solitude to do it in, and would be expected to interact with others all day, every day. It makes me shudder even to write about it.

3) Employment Issues. Employment is a big issue for many older autistics. We may have learnt how to conduct ourselves at a job interview, but chances are our employment history is chaotic, spotty or almost non-existent, we may have trouble getting on with our bosses or co-workers (often due to that unresolved emotional baggage I mentioned above); or perhaps our educational history is as confused or lacking as our work history. We may feel we could do a particular job, but don’t have the ‘right’ qualifications, and it’s too late to spend years more getting them. We are often poor, marginalised, un- or under-employed, and lack hope of ever getting out of that situation. Or we’re employed, but have struggled through years of feeling lost, and overwhelmed by the social demands of the job. This latter has lead to early ‘retirement’ for some, and/or major health issues.

4) Family Issues. Some older autistics have good connections to their family (I count myself as one of the lucky ones, in this respect). Many, however, are alienated from their families, who didn’t understand that their behaviour was due to undiagnosed autism, and not to the individual simply being a jerk, an arrogant bitch, or a deliberate pain in the posterior. Or family members are hostile, hypercritical, judgemental, and unsupportive. The result for an ageing autistic is that they are often left to deal with life on their own. When you add in that this group is likely to have few or no friends, to possibly not be part of any social network like a church, to be poor, and to have health issues related to their decades of undiagnosed autism, the prognosis for a comfortable ‘senior citizen’ phase of their life looks very poor indeed. These are the sort of people who stand a high risk of not being found till several months after they die, alone, in their tiny, substandard living accommodations.

5) Relationship Issues. The same things that happen with families of origin, are likely to happen with marriages and/or children. Our history of adult relationships can be messy, confused, patchy, non-existent, and/or we’ve left a trail of angry, confused people behind us. Some have been, or still are, victims of abuse in those relationships. Some are even alienated from, or have only distant relationships with, their own children and/or grandchildren. Some of us have given up on the whole business of sexual relationships or marriage, it’s just too much hard work. Which is our right, but once again leaves us alone, and without support, as we age and become more infirm.

This is only a rudimentary attempt at defining what older autistics need, and not intended to be the ‘final word’ on the subject. I hope that others will develop and continue the discussion. What I do know is that we don’t need – or want - our hands held, or patted “there, there dear”, and we’re past the stage of needing social skills classes or ‘transitions’. What we want is what anyone else in special circumstances wants – recognition, understanding, respect, support and practical assistance. The exact shape of the latter has yet to be defined, and will probably differ from one older autistic to another anyway. What is important however, is that we should not be disregarded, just because it looks as though we are ‘managing’.

We Are The Last Group That Will Be Liberated

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

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

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

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

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

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

We are not.

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

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

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

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

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

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

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

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

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

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

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

We don’t share it.

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

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