Such attitudes are, I believe, the result of young autistics growing up receiving negative messages about autism (communicated openly or not) from those around them. Some have had years of ‘special’ education and ‘treatments’ and being told or having it assumed what they “can’t” do, rather than being encouraged to explore what they can do. Others are newer diagnosed, but still accept the ‘doom and gloom’ image of autism. They’ve all come to believe that being autistic is an affliction that will ‘ruin’ or at least constrict their lives. In consequence, it’s like they give up on life before they’ve even started.
We older autistics have a certain advantage here – going through life without the benefit (or drawback) of a diagnosis, we were simply expected to get on with things, and so we did. We got educations or training, worked in various jobs and careers, travelled and saw the world, had relationships, had kids and raised them, joined churches, community organisations, social and political movements, did volunteer work and a whole heap of other things - in short we just got on with our lives, and participated in the world, to the best of our abilities – and frequently beyond them.
And yes, it did come at a enormous cost – massive confusion, anxiety and stress, frequent meltdowns or shutdowns, depression, self-hatred and low self-esteem, often leading to physical illnesses or even suicide attempts, not to mention suffering the frequent anger, rejection, ridicule, derision, bullying, abuse, exploitation, etc of others, without having the slightest idea why we were being so harshly treated, or what was ‘wrong’ with us.
BUT. (And it’s a big BUT.) But we also achieved much, learnt much, accumulated a great deal of experience - and came to understand ourselves a lot better, and to know exactly what our real capabilities are. We know that we can do much more than autistics are ‘supposed’ to be able to – because we’ve done it! (And when people try to claim that “proves” we “can’t be” autistic after all, we can only roll our eyes.)
Yes, I know it’s easier said than done – and that at least some young autistics don’t do anything much because they simply don’t know how, or where to begin. Ignorance of the world and how it works is a huge problem for young autistics. I remember it was for me. So here’s a possible plan of action for them.
1) Accept your autism. Embrace it. You might as well, because you can’t get rid of it. [Don’t hope for a ‘cure’. Those working on ‘curing’ us are either a) working on methods to suppress all outward signs of our ‘deficiency’ – meaning they want to force us to hide who we are – or b) working on ways to eliminate us before we’re even born.] Find your true peers, ie other autistics, and you will begin to see in them the beauty that is also within you. We have problems, yes, but we also have great strengths. Develop them, use them, grow into the fullness of your true autistic self.
2) Know yourself. Know your personality, how your autism manifests, what you are as well as being autistic. Many young autistics (including me when I was young) don’t really have a great deal of self-awareness, and hence can’t decide what to do with their lives. Whether online or in books, do personality tests, IQ tests, aptitude tests, ‘the right job for you’ tests, etc, etc. Scour the library and the internet, read anything that might enhance your self-knowledge. Yes, most of what you read will be NT-orientated, but that doesn’t mean there’s nothing helpful in it. Take what is relevant to you, and discard the rest. The point is to increase your self-awareness, not to dump on yourself for not being ‘normal’.
3) Work on your obstacles. Don’t let ‘autistic things’, eg a tendency to meltdowns, stop you. This is where other autistics can really help – we have a pool of knowledge that can help you figure out your triggers, recognise your warning signals, cope better, ask for accommodations or changes, etc, etc. And if one thing doesn’t work, do try another, and another, and another. Don’t just give up, and let these problems stand in the way of a fuller life. There’s a way round everything.
4) Formulate goals. Once you know yourself a bit better (and this is usually an ongoing thing), you can begin to figure out what you want to do. List what you know you can do well, or like to do – even if it’s only looking after your pet, making cakes, and playing computer games. Fancy being a baker? A vet? A computer games designer? Don’t let your imagination be limited by what you think you ‘can’t’ do, or have been told you’ll ‘never’ be able to do. Figure out ways to do it anyway – eg, if the idea of studying long years to become a vet is too daunting, what about being a vet nurse instead? A cattery or kennel assistant? Or working in a pet shop, or even as a volunteer at an animal shelter or SPCA? It could be the first step to a rewarding, fulfilling career. Go for it.
5) Find mentors. If there’s one thing I wish I’d had more of when younger, and that I wish for younger autistics, it’s people willing to guide and inform us. We are so woefully ignorant of so much, we need to be told, explicitly, of a whole bunch of stuff, and guided through it till we learn how to do it for ourselves. You will probably need more than one mentor, and to keep periodically finding new ones, as your life changes – someone for educational or career stuff, someone else you can ask ‘how do I do this’ type questions of, maybe someone else still for dating or relationship advice. Look for these mentors amongst your family and friends, your teachers, support people and school careers advisors, but also at disability resource centers, campus disability support services, social services, NGOs, religious institutions… whatever is available in your community.
6) Stretch yourself. Now and again, give your boundaries a little push. Take risks. Maybe the ‘pushing’ has to be well-prepared for, and the risks small, brief and ‘managed’ ones. But you will learn from them, and expand your capabilities. Keep doing this throughout your life – and you will surprise yourself with what you find you’re able to achieve. It will do wonders for your self-esteem, believe me.
7) Above all – be proactive. Take charge of your life – because ultimately no-one else will do it for you. (Even if they’ve done it up till now, they won’t when you’re an adult. Or they shouldn’t, not if you can learn to do it for yourself.) Yes, you will make mistakes, but don’t be too hard on yourself for them, or try to avoid them altogether. Making mistakes is human.
Don’t get me wrong – I’m not saying that it will be easy, or that changes are going to happen overnight. But it’s still worth the effort. And in case you’re still not convinced, let me list what is likely to happen to you if you continue to just sit around and complain about what you ‘can’t’ do.
a) Poverty. If you think being poor sucks at twenty, imagine still being poor at forty. Or fifty, or sixty, when your health, hearing or eyesight is deteriorating and you still can’t afford decent housing or furniture or food, and the prospect of any job has become a mirage.
b) Homelessness. This is a real risk for the poor at any age – and it’s a prospect even less attractive when you’ve got arthritis, a dodgy heart and tired, aching bones. Fancy being a bag lady, or living under a bridge?
c) Institutionalisation. Who do you think will look after you once your parents/caregivers are gone? Siblings and other relatives are often not keen on taking on that burden, financially or otherwise. If you haven’t acquired at least some measure of independence, as an alternative to being homeless, you could end up somewhere really, really horrible. Think the worst kind of old folks’ homes. Think the Judge Rotenberg Centre. Look it up – and be afraid. Be very afraid.
d) Compassion Fatigue. Put bluntly, when you are no longer young, and your life hasn’t changed any despite the best efforts of others, people get tired of trying to help. You could find yourself without any kind of support system at all. You could even end up one of those old people who die alone and friendless, in their tiny flats or apartments, and aren’t found till they’ve been dead for weeks.
e) Boredom and frustration. Doing nothing actually sucks. It’s really, really boring, especially if you do it for years on end. Even if you have a whole heap of special interests, your life may still feel constricted. You might even get so frustrated with it, you do something completely crazy that turns your life upside down, just to break the monotony. The trouble is with these sudden changes is that we’re usually totally unprepared for them, and hence they tend to rebound on us, making our lives much worse.
f) A sense of unrealised potential/life passing you by. It will also suck when you’re old and look back at your life and realise how many things you could have done and didn’t. You’ll feel like life and the years have vanished, while you did nothing, achieved nothing, were nothing. It’s a horrible, horrible feeling. Avoid it. Get off your butt and get out there, in one way or another.
I want to emphasise here than I’m not saying these things to lecture you, but because all of you are precious to me. Yes, there will still be difficulties and trials – they are part of everyone’s life – and of course some of us older auties have experienced the above too. You may endure some of them anyway, even when you’ve put in your best efforts. But it’s pretty much guaranteed that you will (especially e and f), if you don’t take charge of and do the utmost you can with your life. Even if you’re ‘lower-functioning’, and full independence may always be beyond you, nevertheless, you still need to take control of as many areas of your life as possible. Because the alternatives suck, big time. And you deserve better.