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.

What I believe about Autism

I figure I might as well lay out my beliefs about autism from the start. Note I include Aspergers here as well.

1) Autism is genetic. Period. Even if there’s no autism in your or your spouse’s family (have a lot of techies and engineers in the family? A few ‘eccentrics’ or loners?), it’s still genetic. It’s not caused by vaccines, mercury, bad parenting, damage in the womb or at birth, or any other environmental cause. The most I will accept is that something might trigger the autism that is already there. As for the ‘autistic collapse’ which so many report, read Charlotte Moore’s book ‘George and Sam’. She goes into a lot of depth on her two autistic sons’ collapses, on how the signs of autism were nonetheless there from birth, subtly but unmistakably. She also postulates that these ‘collapses’ might be due to how, while we expect little social or linguistic interaction from babies, greater expectations in the infant’s second and third years (typically) overload and cause a withdrawal on the part of the young autist. To which I would add probable sensory overload as well.

2) Autism is not a monster. My autism is me, and I am my autism, it affects every part of my being and my life, and while I’ve never been any angel, I’m certainly not a monster. There is no ‘normal’ person underneath the autism; it is not a ‘layer’ hiding the ‘real’ person. Our ‘true selves’ were not ‘stolen’ by the ‘monster autism’. What you see is the real person. We’re autistic all the way through. Deal with it.

3) Autism is not a tragedy. It can be difficult, yes, even arduous, raising a child on the autistic spectrum, even one with the ‘mild’ diagnosis of Aspergers. But it’s only a tragedy if you make it a tragedy. Attitude is what counts. Go around boo-hooing about how hard your life is now, lamenting that your child is ‘not normal’, and you will make your life infinitely harder than it need be. (And for those who think, “oh well, she’s obviously on the ‘higher-functioning’ end of the spectrum, she doesn’t know what it’s like raising a severely autistic child”, I would say here that I worked with such children back in the 1970s, before modern understanding of autism. Also a good friend of mine has a child who is severely autistic and developmentally delayed. I know what I speak of.) Read Jim Sinclair’s essay ‘Don’t Mourn for Us’ (at http://www.autreat.com/dont_mourn.html ), grieve for the child you thought you had that wasn’t born, and then deal with the child that you have. Love them as they are. They will need it.

4) Autism is a disability. Now this one is tricky, and needs to be qualified. It hasn’t been (in my opinion) adequately separated out what about autism truly causes the person to be ‘disabled’ or ‘lesser-abled’ – such as our executive dysfunction, lack of innate social skills, inability to read body language instinctively, or developmental delays – as opposed to those traits which are simply signs of our different thinking/reacting to the world – eg our stimming, our visual thinking, or our ability to thoroughly absorb all there is to know about our favourite subjects. The first, we need help for, yes, the latter, I don’t see need to be ‘corrected’ or ‘squashed’ at all. Sometimes, it seems even those on the spectrum aren’t too clear about this distinction.

5) Autism’s different mind-set is NOT a disability. This follows on from the last, really. We have a lot to offer, if the world would truly listen to autists themselves (and I don’t mean only those who are ‘higher functioning’ either). For instance, our thinking isn’t bound by the usual conventions, prohibitions, and restrictions. We cut through the bull, the ‘beating around the bush’, the little dishonesties that rule most people’s lives. We call it how it is – even if it’s nonsense (to use the polite word). We’re truth-seekers. Some actually like this in us. And if the world would only give us a chance, they might find much more to value in our ‘different’ ways of thinking and reacting to the world.

6) Any therapy for autistics must take the above into account. There is a belief out there among some parents of autistic children that we adults on the spectrum are against all therapy for autistics. Not so – or at least not the ones I know. What I (and i suspect many other autistics) would like to see is that before undertaking any therapy, parents ask themselves – what am I hoping to achieve? Do I want to give my child specific skills that will help them in life – or do I want to eliminate all signs of their autism? The first is the help your child desperately needs, the second is not, and may even be harmful. Read the following, which explain this better than i can, and in more depth - http://www.adeepercountry.blogspot.com/2010/11/autistics-speaking-day-post.html

Okay, that’s it - for now.