The Perfect Mother For An Aspie

Those of you who know me through Facebook will know that my mother passed away recently. It's been a great loss to me and my family, she was our gentle matriarch, our anchor, our centre and guiding light. But much of our grieving is a private thing, and it's not that I want to talk about, but rather about how she was as the mother of an aspie.

When I was a child, my mother, in an era when autism was barely heard of and Aspergers never heard of at all, seemed to recognise that I needed a little extra help with life, and it was just instinctive to her to give it. She guided, helped and supported me right all through my life, long before either of us knew about my Aspergers. Right up till the end, for instance, even after spending decades learning how to read people, I would still often turn to her to check on my perceptions, asking her things like "Did So-and-so seem __ to you?", and she'd say "no, I don't think so", or "Oh, yes, was she ever!", and so on. I'd ask her how to go about things, and she'd give me advice, in the calm, thoughtful manner that was typical of her.

In fact Mum was always very even-tempered, I rarely heard her raise her voice, except perhaps to call to someone in another room. She did get angry now and again - her lips would press tight and her eyes flash, signals even as a child I was able to recognise! But I don't think I ever saw her totally lose her cool. This composure helped me in turn, when I got agitated about 'little' things. Throughout my life, she was able to calm me down and prevent an incipient meltdown simply with a few quietly reassuring words and a pat on the shoulder or back, etc. She never assaulted my ears by yelling, and was always willing to adjust things to my sensory needs whenever reasonably possible.

My mum was intelligent but never intellectual, she operated from the heart far more than the head. This was a much-needed counterweight to my tendency to go off too much into my head - and though I never thought about it consciously at the time, I'm sure she influenced my realisation, in my late 20s, that the best path for me was a balance of heart and head.

She helped me in practical ways too. When I first learnt to drive, for instance, I was very nervous of driving at higher speeds, and when we went on long trips together she'd wait till we got somewhere less busy and then get me to drive, giving me patient advice like "it's best if you keep an even speed", or "turn the wheel more gently". I remember one day she reached over and patted my hand, and said "relax your hands, Pen, you don't need to grip so hard," and I realised I was clutching the steering wheel like it was a life raft and I was drowning! Like many aspies, I have my difficulties with driving, but I definitely became less tense and more skilled as a driver, thanks to her quiet help.

She was also a role model for me in many ways. While, like many on the spectrum, I've always had trouble expressing (NOT feeling!) qualities such as empathy, a lot of what I have learnt to do is through following my mother's example. Her entire life was centered around caring for people and helping them, particularly family, but also anyone else in need she encountered. She would always lend a compassionate ear to other's woes, as long as she felt they were genuine. Her generosity was legendary, and I was a frequent recipient of it. Her paid work was always in one helping profession or another and she was involved in a long list of charities over the years. She never made a big deal out of it, or indeed about any of her values and beliefs, rather she simply lived them. I absorbed much of this, at first without consciously realising it. Like her, I believe in helping others, and in doing my bit to make the world a slightly better place, even if the way I do it is different.

She also modelled courage and determination. After years of enduring an increasingly unhappy marriage to my father, in her middle years she divorced him, a thing almost unheard of for women of her generation and background, and launched into a new career as a social worker, making new friends, travelling the world (my mother saw much more of the world than I have!) and having all sorts of adventures. She even went paragliding - at eighty!! Many a time I've thought "well, if my mother can do 'x' at her age, I can do such-and-such at mine!"

Mum was always willing to try something new, find out new things. I know that if she and I were fifty years younger today, or if the diagnoses and information that's there now was around when I was a child, that she would have been researching and reading everything she could on autism and Aspergers. As it was, if she saw a magazine article or TV program about autism, she would always point out them out to me, and ask what I thought of them. She read my blog whenever I showed it to her (the Internet was always something of a mystery to her, tech-savvy she was not!), and was really supportive and interested in the column about disability issues I recently started in the local paper. She sometimes asked me how I perceived something, or why I had difficulty with something. Though she sometimes had difficulty understanding me, she always tried to, she always kept an open mind.

Despite all this, in her final illness, Mum said to me that she'd sometimes felt "helpless", to know how best to help me with my AS. I said to her that she didn't need to have done anything, that simply being herself was enough. We were interrupted then, and I never got back to the subject, but I would have gone on to tell her just how grateful I was for her total acceptance of me as I am. She told me once that when I was a child, yes, I had my "funny little ways", but "that was just you, it was just how you were, all my children had different personalities, I never thought twice about it." So much so in fact that when I first told her I suspected I had AS, she pooh-poohed it, even laughed. But then, ever open to new ideas and listening to people, she stopped and asked me why I felt that way. So I explained, and she listened, and finally said, "well, it doesn't matter, you're still my daughter and I still love you." And gave me a huge hug! I wish that I'd been able to tell her just how much that meant to me.

My being "different" never seemed to bother her. She teased me sometimes, true, but it was always done with affection, and that total acceptance. One of the final things she said to us was "no judgement, don't judge people". I never saw her judging people because of race, gender, sexuality, religion, disability or whatever. Family meant everything to Mum, and she also gave me the gift of a loving, extended family, always fostering my connections to them, drawing me into the circle, even when my social skills were pretty minimal.

Perhaps most importantly of all, I felt safe with my mother. When I was a child, she provided clear structures and routines, with fairly simple rules and expectations, yet all of it practised with love and patience. And throughout my life, I knew that I'd always have a place to stay with her if I needed one. I will miss many, many things about my mother, from the companionable dinners eating fried rice in front of the TV (often followed by 'naughty' chocolate!) to her wicked sense of humour, from her gentle wisdom to the trips we took together, and much more, but I think possibly I will miss that feeling of safety most of all. I don't know that I'll ever have that again.

For an aspie of my generation - indeed, any generation - she was the best mum ever. I wish that all autistics could have a mother like mine.

Things I Don't Understand - Number Seven

I don't understand greed.

I don't mean being greedy for food, I do sometimes want to gorge myself on food that tastes really good, eg Christmas dinner, though I've learnt to restrain myself, as the results are not good! No, what I mean by greed is financial greed, the urge to accumulate more and more money, gather more and more of it into one's hands, or bank accounts.

I'm thinking here of how, when a reporter once asked an extremely wealthy man what he wanted, he replied "more money". He already had more than most of us could spend in a lifetime, yet he wanted more. And I suspect there are many out there like him.

Greedy people have always been amongst us, and there have always been disparities of wealth, though till the Industrial Revolution only royalty and the most powerful nobles could hope to live truly extravagantly. The resources and the material goodies just weren't there. And there have also always been those opposed to anyone having such a lion's share of the world's wealth, especially if it's at the expense of others (and it usually is). And during the middle decades of the twentieth century, it truly did seem that the world's wealth was becoming more evenly distributed, at least in the Western part of the world.

Now, however, it seems the wealthy are gaining the upper hand again. I read somewhere recently that in the 1960s, the USA's richest men had about thirty times the income of the poorest. These days, the richest are worth around three hundred times the poorest. (I don't have the reference handy, but it was something like that.) With this sort of concentration of wealth in the hands of fewer and fewer people, is it really so surprising that even the middle class are struggling, while the truly poor increasingly go to the wall? I think not.

Even in New Zealand, a country traditionally without this kind of financial obscenity, we are beginning to see such differences. In the same week that Campbell Live, a NZ current affairs programme, campaigned to raise money for Kids Can, a charity that feeds kids in poor schools, one of the wealthiest men in NZ launched his new yacht in Norway - worth around $NZ 78 million. The Campbell Live campaign raised around $NZ 800,000. This means that for less than one seventy-eighth of the value of his yacht (and he already has two others), this wealthy man could have provided breakfast and lunch for hundreds of hungry kids from poor families.

There are of course plenty of other obscenities of wealth out there. The movie stars who think nothing of spending thousands on a handbag or scarf, or tens of thousands on 'therapy', while just a few miles away homeless people are rummaging in bins to feed themselves. The huge houses of the rich, while down the road kids go barefoot and hungry to school. And no, I'm not talking about third world countries, but countries like New Zealand, Australia, the UK and the USA. 'First World Poverty' is very, very real, and becoming more so.

Don't get me wrong - though I would be deemed at least 'left-leaning' by most standards, I'm not any kind of communist, in fact I dislike communism as a system. And life's luxuries are very nice, I wouldn't deny that. I like decent cars and a nice house and smart clothes as much as the next person. I also know that many of the richest do give substantial amounts to charities. Though perhaps not all - a recent magazine article here in New Zealand asked if being rich made you nasty and selfish - and it seemed that sometimes, yes, it does. A typical example they quoted was how street charity collectors often get a better response in poorer neighbourhoods than they do in rich ones, that in fact the rich often ignore such collectors. The phenomenon of the rich attitude that the poor are 'just lazy', and should 'pull themselves up by their bootstraps' is also very real too, according to that article - which of course totally ignores the fact that a) not everyone has the entrepreneurial ability to become rich, and b) they've left a lot of us without any metaphorical 'boots'.

I don't know if my lack of understanding on this is due to my being an aspie or not - I have noticed many aspies do seem to be on the 'left' side of the political spectrum, probably because of our passion for justice, which extends to social justice. Others seem to be totally neutral, either undecided or so turned off by humanity that they don't give a damn, while a few express rabidly right-wing opinions - though I've noticed they also seem to be the ones who have jaundiced, misanthropic views in general, due usually to years of ill-treatment from the world.

I wonder too if my attitude is at least partly due to the family values I was brought up with. These values weren't made explicit, were never lectured to us or pushed on us, but rather simply demonstrated. I grew up seeing my parents get involved with groups such as Plunket committees, school lunch committees, and Lions Clubs. In more recent years, groups like the Child Cancer Foundation, Hospice, Save the Children and others have received the benefits of my family's energies. Moreover, we've all tended to gravitate towards careers and jobs that help, educate or take care of people - nursing, education, social work, etc. Community involvement is almost taken for granted in my family.

This philanthropy goes further back than just this generation - family history research has turned up evidence my ancestors were on church or sports committees, organised fundraising events, or were members of such groups as the Rebekah Lodge, the Hibernian Society and the Druids Lodge.

I've also had more than one discussion with various family members about "what we'd do if we won Lotto". The general consensus was that, after we'd satisfied our own needs, we'd distribute our wealth. 'Paying off our younger generation's student loans' and 'buying everyone in the family houses' featured prominently on that list, and there was a general feeling that beyond taking care of your own needs, it was best to 'spread the wealth' and help as many as possible.

Or perhaps my attitude is because of my own personal experience of all too often having to go without - I've survived, at times, thankfully never for too long, without things that most Westerners consider 'basic amenities', such as fridges, electricity or hot and cold running water; I've also lived (for a few weeks or months each) in a tent, caravan, housetruck and converted cowshed. I've gone without fancy clothes and many material goodies that others take for granted, and had to trim my budget or shopping bill to eliminate anything not absolutely essential to keeping body and soul together. I'm not saying this is a good thing, I'd very much like to not have to do that, but it has taught me you can live without many of the things most Westerners consider necessary to existence. Luxuries are very nice, but they're not essential. Other life-experiences have also contributed to what I can only describe as a feeling that "all things are best in moderation".

And that includes wealth. So I just don't understand greed.

The Suffering of Autism Parents

I hear so much in the mainstream media about the 'suffering' of autism parents (though far too little about the feelings of their children), how difficult' it is to have an autistic child, the trials they go through to 'help' their children, etc, etc. The general feeling of such parents seems to be guilt, for somehow either causing their child's autism (by, eg, exposure to certain things before birth), or not preventing its continuance (because they didn't do this or that therapy, or didn't do it early enough, or enough of it, or the 'right' one, or whatever). They thrash themselves with this guilt, devote long hours to their children's therapy, and/or bankrupt themselves trying to afford all the latest 'treatments'. Or if their attitude is not one of guilt, it's of negativity, of 'fighting' and 'hating' Big Bad Autism. Either way, their lives seem pretty stressful.

Now, I sympathise more than you'd think with such parents - their lives look incredibly hard, and they always seem worn out. And certainly dealing with some autistic behaviours such as meltdowns can be difficult. But I'm also left with the feeling that so much of their suffering is completely unnecessary, based as it is on the idea that their child has to become 'normal', before this weight will slide off their backs. The assumption is that such 'normalisation' is the only goal worth pursuing, when it comes to autistic children. (The assumption also seems to be that their child is 'suffering' just from being autistic, and so to relieve that suffering, the child has to become, or at least seem to be, 'normal'. But I'll deal with that issue in a separate post.) But what I want to argue here is that if such parents are willing to take a different approach to autism, their lives, and those of their children, would be eased considerably.

So here is my advice to them.

First of all, understand that autism is increasingly being proved to be genetic in origin - i.e. nothing you did caused it. It's also now understood as being neurologically based, we have quantifiable and substantial differences in the way our brains work, differences that are fixed, permanent, and intrinsic to our very nature. Our autism can't be separated from us (can you separate your neurotypicalness from yourself?), hence you can't destroy autism without destroying the autistic individual. So don't blame yourself for not being able to 'get rid' of it. Instead, find and read Jim Sinclair's "Don't Mourn For Us". Written in the 1990's, it's just as relevant today, and just as potent, as to what it means to the autistic child when you say you wish they didn't have autism.

Secondly, armed with this knowledge of autism's fixedness, think what it means to your autistic child to constantly receive the message that something so intrinsic to their very nature is 'bad'. Understand that suppressing autistic behaviour and mannerisms is NOT the same thing as 'getting rid' of the autism. All it means is that we've managed to hide this 'badness'. I leave you to imagine what that does to your child's self-image, in the long run. I have seen countless autistic adults who suffer with low self-esteem, depression and other mental illness, even alcohol or drug addictions or suicidal urges. I've also met or heard of many younger autistics, now coming into their late teens or early twenties, who believe that because of the 'curse' of their autism, they're not able to have anything like a normal life, so they sit back and refuse to even try. Is this really the kind of life you want for your kids?

Thirdly, understand that your child is not 'lost', but simply different. They will have different needs, behave in different ways, communicate in different styles, and so on. Remember too that all behaviour is communication. Yes, even those meltdowns. If you can let go of the idea that your child 'must' be normal, or at least aiming for normal, and stop worrying about the approval of others (who usually don't know or understand your kid or family anyway), you can then see, and embrace, where your child is actually at. And embrace their real needs - not for 'normality', but for understanding and practical support.

Fourthly, entertain the idea that there may be nothing wrong with the autistic mindset in itself. That many of the difficulties that beset us are caused by other people's attitudes to us (eg judging us as 'rude', when we are actually just honest), lack of specific supports (eg visual aids, communication aids), or the world simply not being congenial to us (eg things that cause sensory overload). In other words, change their world, rather than waste energy trying to futilely change your child. Understand also that your child is not giving you a hard time, they are having a hard time. If the pressure to be 'normal' was removed, their load would be lightened along with yours.

Fifth, read everything you can lay your hands on written by adult autistics, and I don't mean just Temple Grandin either (though that's a good place to start). Accept that we are what your child will someday become, their future peers and role models, and that we have a viewpoint worth listening to, not to mention help in understanding your child, why they might be behaving or reacting in certain ways. But understand too that we are human beings, and don't want to be treated solely as a resource.

Sixth, do your best to find parents who have accepted, even embraced, their child's autism. You will find (as I have) that their lives are much less stressed than the 'normalising' parents. These parents still have problems, and issues to deal with, but they seem to me to be far more relaxed (and also not so financially stressed). They focus on particular issues - eg toilet training, dietary problems, communication difficulties - and deal with them one at a time, rather than trying to 'eradicate' the autism wholesale. This approach is one I call maximisation, i.e. they try to help their child become the best autistic they can be, rather than forcing normality on them. Consider becoming one of them. And watch the stress drop away.

Last but not least, understand that if you've been caught up in the whole 'hating/fighting autism' thing, you have to some extent been 'brainwashed'. Not intentionally, but the weight of all the negative media images of autism, the attitudes of other autism parents caught up in the 'fighting', the promotions of autism organisations often run by such parents, their vehement criticism of adult autistics who speak out, not to mention the entire autism industry telling you how 'sick' your child is and claiming they have the 'cure', etc, etc, well, it can all be overwhelming, filling your thinking to the point where you've possibly lost sight of your real needs, and those of your child. Try letting go of all that angst and hatred and 'fighting'. You might even begin to enjoy life again - and you can get to enjoy your children too, instead of constantly 'working on' them.

I know that it won't seem easy, especially if you've been really caught up in the frantic struggle to destroy Big Bad Autism. And I do understand that most parents who are, are simply trying to do what they think is best for their child. All I am saying, is that there is an easier way, one that will de-escalate your stress, relieve your bank account - and your child. And change your life.

The People of the Eye

Lately I’ve been reading a very interesting book called ‘People Of The Eye’[1], a collection of life-stories by New Zealand deaf people.

Due to a family connection, I’ve known a deaf woman since I was in my teens and she was a child. Communication with her and her younger sister (also deaf, who tragically died in her twenties), though limited to interpretation through their mother, gestures, lip-reading and the few signs I know, soon showed me that ‘deaf’ did not mean ‘dumb’. They were lively, intelligent girls, with a great sense of humour. On one occasion, for instance, the younger girl asked me through her mother what I’d had for dinner. I couldn’t remember the sign for chicken, so instead bent my arms and flapped them like chicken ‘wings’. They almost rolled around the floor laughing! I also knew, through overhearing conversations between our mothers over the years, some of the deaf ‘issues’ of the day.

However it wasn’t till reading this book that I began to understand the depth of the problems deaf people in NZ (and elsewhere) have faced over the past century, and continue to face.

Briefly, the story is this. In 1880, the International Congress on Education of the Deaf passed a resolution to stop using signs to teach Deaf students. Being deaf was considered a ‘deficient’ or pathological state, and it was decided it was best for deaf children to learn to lip-read and talk, ie make them as ‘normal’ as possible. Speech, they declared, was vastly ‘superior’ to signs, and therefore the latter must be eliminated.

As the first School for the Deaf in NZ didn’t open till that same year, this approach, known as ‘oralism’, was used from the start. Older generations of NZ deaf were punished for using signs, and made to feel ashamed of it. Nonetheless, those children who did know some signs taught each other when teachers weren’t looking. As you might expect, the most profoundly deaf never learnt to speak well (my family friend included) as they simply can’t hear what they are supposed to be reproducing. Eventually as adults they began to form their own Deaf communities, where signing was the main method of communication, as this was the one most natural to them.

The deaf being considered to be ‘incapable’ of any work other than the most menial, vocational education was the focus in their schools, and this, together with the huge amount of time spent on oral speech training, meant the standard of education suffered. Many older Deaf people have been limited in their academic abilities and achievements as a result of this, and it’s only in recent decades that some younger Deaf people have made it to university. (I speak here of the NZ situation of course, this book makes it plain that this doesn’t apply in other countries, especially the US, and many NZ Deaf in this book express amazement and envy of the support American Deaf enjoy, and their educational achievements.) From the 1960s on, many deaf children began to be mainstreamed in regular schools, which was done with good intentions, but as few teachers had any idea how to support their deaf students (eg by simply remembering to talk facing them), and they had no interpreters, their educational achievements remained, not surprisingly, generally low.

It wasn’t till 1979 that a form of signing was allowed in deaf schools – and even then, it was not NZSL, but a method known as ‘Signed English’ or ‘Total Communication’, which corresponds ‘word’ for ‘word’ with spoken English. This method however is not natural to the Deaf, true sign language being vastly different to spoken English. NZSL interpreters didn’t begin to be trained till 1985, and the number of them is probably still small. NZSL was finally allowed in Deaf classrooms in 1993, the first Deaf teacher of the Deaf qualifying in 1992. Things are slowly changing, but many Deaf people still feel far more comfortable with other Deaf, simply because communication is so much easier. They have their own clubs, social events, sports, and even Deaf Games; in short their own culture and community, and most definitely do not regard themselves as ‘disabled’ or ‘handicapped’. The Deaf people in this book express pride in their way of being, see nothing ‘wrong’ with being Deaf, and were not bothered at all when some of their children turned out to be Deaf. They are proud, self-reliant, and amazingly strong, worthy of admiration and respect.

The ‘pathologising’ of one’s condition, one’s difference seen as ‘inferiority’, attempts at a forced ‘normalisation’ or at least outward elimination of this ‘inferiority’, restriction of hand movements, being educated in a way that is inharmonious or injurious, being treated as though one is ‘stupid’, insistence on communication by methods foreign and unnatural to one’s being, and which moreover in most cases can never be fully learnt, the slow forming of communities ‘away from normal eyes’, the equally slow formation of culture and pride in one’s own natural way of being….

Does any of this sound familiar to you spectrumites?!!?

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[1] Rachel McKee, People of the Eye – Stories from the Deaf World, 2001, Bridget Williams Books, Wellington, NZ.

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’.

Be Kind to Yourself This Christmas

The festive season is a difficult time for just about all on the spectrum, and I want to urge all spectrumites to be kind to themselves this year. Most of us get stressed out to the max. Some struggle to understand the whole point of it all. Others feel even more lonely and isolated than they do the rest of the year. Those who do throw themselves into participating, can fall into the trap of trying to have, or thinking they ‘should’ have, the ‘perfect’ Christmas, just like in the Christmas movies or in TV programmes or ads.

It’s important to remember that even NTs find Christmas a stressful time. There’s a reason why domestic violence statistics shoot up at this time of year, for instance. Many NTs also have dysfunctional families that make Christmas gatherings a nightmare. And then there’s the financial stress of gifts and extra travel and special foods, especially this year when even your average middle class person is struggling to make ends meet, and those on the breadline (which includes many of us, with our high unemployment rate) are beyond struggling and into desperation. So don’t think you’re alone in finding this time difficult.

There are practical things you can do to reduce Christmas stress. For gifts, avoid the nightmare of large department stores – instead try small speciality stores, or do your shopping online or through catalogues. Visit a farmer’s or craft market if there is one near you, they’re often great places to find that special and/or ‘different’ gift at a moderate cost. Alternatively, people are usually thrilled to get homemade crafts or baking, if you have a talent for these. If you have kids, or are buying for kids, don’t get caught up in thinking you ‘have’ to buy them expensive toys etc. Kids are often surprisingly content with less expensive items, especially those which involve crafts or physical activity – or that make a lot of noise!!!

Food-wise, stick to your normal types of food as much as possible, throughout the season. If you’re gluten or dairy free for example, make sure others who are doing any of the Christmas cooking know this, and ask for at least some of the food to be ‘okay’ for you. Make suggestions or give recipes if need be. At the very least, ensure you take some food that you know you can eat. And don’t be tempted by the sumptuous display on the table into eating what you know will mean you suffer later, or let yourself be nagged into it by inconsiderate or well-meaning but ignorant relatives. If you’re doing the cooking, keep it as simple as possible – you really don’t need to provide six different and elaborate main dishes and three starters for example. And ask others to cook/bring some food, eg a dessert or salad each, or some drinks. (Oh, and limit or stay off the alcohol if possible, it tends to make things get out of control very quickly.)

If you’re celebrating at your own home, it’s perfectly okay (even a good idea) to have a gathering of only those people you actually care about and want to be with on the day itself – whether this is a partner, your kids, friends or whoever. If you must have or go to a larger family gathering, or you want to, then ensure you have frequent ‘time out’, by going to another part of the house, or your room, or outside, for a walk if the weather permits it in your part of the world. As my family lives not too far away, I simply go home and rest for a few hours in the middle of the day, for instance, between the morning brunch/present giving and the Big Dinner in the evening. Have your own transport if you can – it makes getting away much easier. There is no need to make elaborate excuses when you do this by the way – if any explanation is necessary, then simply say you’re tired/overloaded/peopled-out, whatever works for you. If they don’t accept this explanation, say ‘I’m sorry, but this is what I need’, and do it anyway. Your own needs must come first, not the opinions of relatives.

If you have no-one to get together with, for whatever reason, and especially if you don’t have a lot of money, consider going to a community or charity dinner, if there is one near you. Better yet, volunteer at one. You get to very gently socialise while you peel potatoes, stir gravies and dish up Christmas puddings. If this is not your thing, then do make some effort to make something special to eat, it doesn’t have to be ‘Christmassy’ foods – perhaps your favourite food is oysters, or bananas! Also do something a little different, maybe play all your favourite songs or movies, play all your favourite computer games, or go for a walk in your favourite spot – whatever will make you feel like you’ve ‘celebrated’ in some way.

And let go of the idea of the ‘perfect’ Christmas. The movie/TV version is a commercialised, sentimentalised version meant to either sell the movie, or get people to watch the programme, or buy the product advertised. It has very little to do with the reality of most people’s Christmas – which more often involves things like kids running around screaming and bouncing off the walls because of over-excitement or too much Christmas sugar, Uncle George getting drunk on the sherry, Grandma falling asleep face down in the trifle, and at least one sibling or cousin having a Huge Fight with someone else and storming out vowing Never To Speak To That Bitch/Bastard Ever Again. (Okay I exaggerate, but these things do happen!)

Do what works for you, not what you think you ‘should’ do. If you have negative or confused feelings about the whole business, acknowledge them as valid, even if it’s only to yourself so as not to spoil things for those around you. It doesn’t mean they are any less valid or real. If you have to go through at least some of the rituals and palavers associated with the season, just grin and bear it with as much good grace as you can. Remember it’ll soon be over, and sanity return!!

And above all, be kind to yourself. Don’t thrash yourself trying to fit into a mold that is not you, and/or not right for your family and close ones. You have the right, even the duty to yourself, to celebrate exactly how you want to celebrate, and not how anyone else tells you, or tries to pressure you, that you ‘should’.

Because you’re worth it. Season’s greetings my friends. Have a good Christmas.