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.

ONE DAY...

ONE DAY.... One day, the very idea of 'un-selecting' any egg, embryo or foetus solely because of its actual or perceived 'risk' of the consequent child being autistic, will be as anathema as the idea of such selection on the grounds of race, gender or sexuality would be.

ONE DAY... Parents will never again grieve because their child is autistic, but rather accept it as simply another variation on human, albeit one that needs more support and understanding than most.

ONE DAY... no autistic will grow up hearing or thinking they are worthless or 'deficient' or 'terrible', or feeling they are a 'burden' on their parents, because of their autism.

ONE DAY... Parents of autistic children (and everyone else) will understand that their child is not 'lost' or 'stolen', or 'in their own little world', but right here in this one, just focussed on different things, and having different priorities.

ONE DAY... Those parents will never be frantic, overstressed and continually anxious or burdened with guilt because they didn't do this or that, or enough of this or that, or at the 'right' time, to 'treat' the autism. They will enjoy their autistic kids.

ONE DAY... It will be accepted as a given that every autistic child is intelligent and aware of their surroundings, whether or not they can speak, unless there is strong evidence otherwise (that's not an IQ test, which many autistic children don't perform well at).

ONE DAY... There will be an end to 'normalizing' autistics into some kind of pseudo-NT state. We will be allowed to be who we are, with a focus on enhancing our lives as autistic people, not squeezing us into a narrow concept of 'normal'.

ONE DAY... One day, there will be an end to harmful and hugely time- and energy-wasting autism 'therapies'. The 'autism industry' which now leeches vast sums of money from overwhelmed and desperate autism parents will go stony broke.

ONE DAY... It will be considered a normal educational practise to work with autistic children's special interests, focussing and building on their strengths, rather than viewing these interests negatively, and/or denying the child time with them so they can 'concentrate on therapy'.

ONE DAY... Stims and other autistic mannerisms will be simply accepted as normal variations on human behaviour.

ONE DAY... Social skills classes will teach autistic kids and adolescents what they really need to know, eg how to recognise, avoid and report bullies and abusers.

ONE DAY... It will be normal practise for every autistic person to have their own mentor or mentors, from school age till well into adulthood, with the right to such mentoring at any further time, if the autistic adult feels in need of it.

ONE DAY... Accommodations such as closed offices or workstations, the wearing of caps and/or sunglasses inside, etc, will be regarded as 'normal practise' where autistics, both children and adults, are concerned.

ONE DAY... Autistics of any age will no longer be murdered simply for being autistic. Or beaten up. Or locked up in mental hospitals, or fired, or jailed because we didn't look some cop or judge in the eye, or any of the other things that currently happen all too often.

ONE DAY... There will be public awareness campaigns based on how we really are... And this autism awareness will be taught as a matter of course, in all schools and workplaces.

ONE DAY... The current treatment of autistics will be looked back on the way we now regard slavery, apartheid, the Holocaust, or the treatment of gays and women before gay liberation and feminism.

ONE DAY... These and many other changes in attitudes to autism will happen.

...One day.

I hope I live to see it.

Autistic Pain

I've written before of autistic shame, but it seems to me there is a deeper emotion running beneath or parallel to that shame, and that's our autistic pain. As individuals and as a group, we are hurting, and hurting badly. Just about every aspie/autie I know has expressed this pain sooner or later, in one way or another, including the younger generation as they grow old enough to express it.

To know the source of this pain, we only have to look at our lives. We struggle daily. We endure frequent sensory assaults, and then feel shame and embarrassment for our meltdowns or shutdowns. We bang up against our social awkwardness and communication difficulties, suffering social isolation, loneliness, depression, low self-esteem and/or anxiety. We run headlong into the knowledge that the world's values are not ours, and that its rules make no sense to us, but we're expected to follow them anyway - and then we get cold-shouldered or criticised or jeered at if we try to be our true selves. We struggle with our relationships, which all too often fail or turn toxic or just never start. We wrestle with our executive dysfunction issues and our inability to 'handle life', feeling like worthless failures, and then are refused the help and support we so desperately need, or get given the wrong sort of 'help' that isn't helpful at all, and sometimes actually makes our lives worse. We get abused or bullied or made scapegoats for others' tensions. And then we're told it's 'our own fault', or 'for our own good', or that we're 'making a fuss about nothing', or 'not trying hard enough', or 'don't have the right to complain', or get asked 'why can't we just be normal?'.

We must exist in a world that doesn't understand us, that often refuses to even try, or to make even the smallest accommodation for us. A world that barrages us with negative messages about autism, making us out to be mentally ill or intellectually deficient; a scourge or disease or epidemic; a 'thief' of the 'real' individual supposedly 'buried' underneath our autism; or anti-social 'weirdos', geeks and loners, possibly even criminals and mass murderers.

Why wouldn't we be in pain? But the biggest and deepest pain, is, I believe, the one that is the sum of all the individual hurts, and yet more. It's the one that comes from our agonizing 'ill-fit' with the world. We are square pegs in this round-holed world, and we so know it. It's a constant abrasion at the nerves, sapping our strength, our hope, our faith in ourselves, our self-esteem, sometimes even our will to live. For me, this pain has always been intrinsic to my very existence, long before I had a name for it, or understood its roots. Some days, some times, it's closer to the surface, only taking a sad song, a soppy movie, or even just a stubbed toe, to make it spill over. Other times, it runs more deeply, like an ache in the bones, or a weariness of the soul. But it's always there.

There are of course no quick fixes for our pain. I'm not even sure in some cases the source of the pain can be eliminated. (How, for instance, would we rid the world of all sources of sensory overload? And should we, when some of those same sources – eg music - can also result in some of our most beautiful sensory 'treats'?) But other sources of pain, however, such as the distorted and mistaken attitudes and actions of others, can and must be eliminated. The pain and the damage being done is so immense.

One thing I do want to stress is that our pain is legitimate – despite what we are all too often told, we are entitled to our pain, entitled to express it, to share it with others on the spectrum who will understand and sympathise - and also entitled to do whatever we have to do to minimise it, stop it, or escape it – up to and including the right to change the world to accommodate us better.

If you recognise this pain in yourself, know that you are not alone. Know that only other aspies/auties will understand it. And that only as a group can we relieve it. We're in this together, my friends. And only together can we stop it.

A Review of 'The Spark'

Lately I've been reading 'The Spark', by Kristine Barnett, about her autistic son Jake and his genius. Some of you may have heard of them (the link to news stories about her and Jake have been doing the Facebook rounds), and even read the book. It tells of how, when her son was three and his special ed teacher told to stop sending her son to school with alphabet cards, because he'd 'never need the alphabet', she refused to accept that he had such a limited future, and set out to prove it. In time, young Jake proved to be something of a mathematical/scientific genius, with an IQ so high it's almost unmeasurable. It's a stirring story, and one that I loved reading... and yet. And yet. Sigh. I have mixed feelings about this book. She did so many things right, and one Big Thing wrong.

The things she did right were -

- Closely observing her son with a realistic eye – and thus coming to recognize that the traditional 'therapies' for autistic children were not helping her son at all.

- Realizing also that during his 'free time', his whole manner was different – purposeful, deeply engaged with the world around him, and in fact “like someone who was lost in very important, serious work.” (pg 41)

- Refusing to accept that her child (or any other child for that matter) should be 'written off' as 'beyond hope' at the tender age of three.

- Believing in her son's intelligence, and that he was capable of far more than the 'autism experts' and his special ed teachers were telling her he could do.

- Trusting her own intuition that she needed to take her son out of the special ed pre-school he was attending, despite the opposition of just about everyone around her, including her own husband.

- Asking herself, “Why is it all about what these kids can't do? Why isn't anyone looking more closely at what they can do?” ( pg 56)- Engaging the child where he was at, by harnessing her child's 'special interests' to help him learn, encouraging rather than suppressing them – even if they seemed incomprehensible, frightening or 'weird' to her and others.

- Understanding intrinsically that other skills will emerge or improve if a child is encouraged to do what they love, and that you can connect best with them through this.

- Insisting that Jake be allowed to have 'time out' and a 'regular' childhood – i.e., to not spend his every waking moment being 'therapised'; a right all too many autistic children are still denied.

- Recognising that “people with autism are in our world. They're just not thinking about the things we want them to think about.” (pg 77, my emphasis added)

- Taking the methods that worked so well to encourage and support her son, and extending them to help other autistic children as well, including some profoundly autistic children that were thought 'unreachable' and 'unteachable'.

And the one Big Thing she does wrong?

She demonises autism.

Yes, even though she is a lot more accepting of autistic 'quirks' than many autism parents, she still says flat out “Autism is a thief. It takes your child away.” (top of page 30, if you're interested). She refers several times to feeling she was 'losing' her son to autism (actually, he seems to me to have been mostly retreating inside his head out of boredom, or perhaps sensory or social overload), she refers to his autism in terms of 'impediments', etc, etc. In other words, she still has a lot of the 'Big Bad Autism' mindset. This even though it's obvious to anyone who knows autistic people that a large part of what makes young Jake special is his autistic traits. Autism isn't responsible for his phenomenally high IQ, but it is almost certainly responsible, for instance, for his ability to focus intently on his particular interests, going deeper and deeper into them, for long periods of time, not to mention his ability to perceive patterns far better than most people can. In other words, he's not a genius because he's autistic, but he uses his genius in an autistic fashion.

To give Ms Barnett her due, she also states that she eventually came to understand (pg 95) that “curing autism would be the same as 'curing' science and art”, and that her “beloved boy hadn't been missing after all. He'd just been working”, and “how fortunate it was that [they] hadn't taken away everything he'd been using for self-stimulation in those early days.” (pgs 93-94). Nonetheless, she still refers several times to people 'losing' their children to autism, and autism itself as a 'locked-in' state. There are mixed messages all the way through this book.

It's a shame that she comes so far, understands so much, does so much that is absolutely fantastic, is so revolutionary in her approach... and yet fails to take that one little step further, that would take her over the 'hump' of attitude change, and into seeing that much of what makes her son so special is his autistic traits, that autism is not a 'tragedy' or a 'thief' or a 'monster', or in any way 'bad', it simply is. Another way of relating to the world. Another way of being. Another way of being human.

This is still however an important book, and I can sum up its essential message in no better words than Ms Barnett's herself, in the postscript, where she says... “This is how far we've come, from the special ed teachers who didn't believe Jacob could ever learn to read, to [his] university physics professor who sees his unlimited potential. That's the kind of ceiling I want my son's teachers to be setting for him. More important, it's the ceiling I want teachers and parents to set for every child, and for all of us to set for ourselves... I'm not suggesting every autistic child is a prodigy, or every typical child for that matter. But if you fuel a child's innate spark, it will always point the way to far greater heights than you could ever have imagined.”

Quite.