Before Choosing a Therapy For Your Autistic Child... Consider These Questions

Parents of autistic children are often besieged by people recommending therapies, with all sorts of dire predictions about how their child is ‘doomed’ to an unhappy life, or ‘will always be a burden’, without this or that usually hugely expensive and time-consuming therapy. Overwhelmed, confused and frightened, parents can end up making decisions based on vague, fear-based concepts like “well everyone says you have to do this”, or “the school/professionals/whoever are pressuring me to do it”.

I want to help parents cut through the confusion, and make decisions based on common sense, rationality and what their child actually needs.

So I’ve come up with the following questions parents of autistic kids need to ask themselves, before committing to a therapy programme.

1) What are you hoping to achieve with this therapy?

Many parents are scared into thinking that the only hope for their child is to ‘normalise’ them, ie make them over into copies of non-autistic children. I’ve made no secret that I am opposed to this normalisation, and for good reason. Autism is a neurological pattern, and therapies designed to ‘rid’ us of it actually only teach us to hide it – with great difficulty, and at high cost. There are now young adult autistics with PTSD, low self-esteem, depression and other mental health issues as a result of such un-therapeutic therapy.

It’s usually pretty easy to recognise such therapies – they use catchphrases such as “indistinguishable from their peers”, or “extinguishing all symptoms”. They may even talk of “curing” or “fighting” or “defeating” the autism. Please, for your child’s sake, think long and hard, and watch it in practise, before choosing any of these methods for your autistic child. Which brings me to my next question…

2) Would this therapy be abusive if done to a non-autistic child?

If yes, then it’s abusive to an autistic one too. Forty-plus hours of intensive ‘compliance training’ a week, bleach enemas, heavy regimes of dubious and unscientific ‘supplements’, forcible suppression of every natural movement, painful and distressing eye contact or social interaction insisted on - and this is only the tip of the iceberg – what other young children have to endure this?

Sometimes people get so caught up in fighting against the autism, they overlook that the child is still a young human being, with feelings and thoughts of their own, even if they can’t express them. Let your child BE a child, let them play and explore the world in their own way, even if it isn’t what you think is ‘normal’. Don’t let their life be all about being ‘treated’, or they will get the message that there is something ‘wrong’ with them.

3) Does my child actually need this therapy/treatment?

Stop listening to the scaremongers. Put your preconceptions and assumptions aside, and take a good long look at your child. Observe them for days, even weeks if necessary, without judging their behaviour, before deciding what they truly need. You may discard some ideas, and consider others.

Some parents are prompted to try gluten-free diets for example, because “they say it helps”, when really these should only be considered if your child has obvious health issues (eg constant diarrhoea, constipation, bulging stomach, ear infections, inflamed complexion, listlessness, etc). But if your child is physically healthy, special diets or supplements are not only expensive, but useless.

4) Is this therapy suited to my child’s needs?

This is an important point. Perhaps you’ve observed your child, and realised they are frustrated by their communication problems. So you think, “oh, they need speech therapy!” But oral speech may actually be too problematic for them. They might do better with something like sign language, PECS, or some form of AAC. NEVER assume that ‘normal is best’. We autistics are different, our cognitive styles are different, and any therapy needs to respect that.

5) What approach does the therapist take?

This is another important point. Even if you’ve decided that a particular therapy would be both good for and needed by your child, the therapist/practitioner may not have the same goals you do. For example, you’ve decided that speech therapy is the right thing for your child. But while you simply want them to be able to express their needs, you find the speech therapist is more concerned with “making them sound normal”. Be very careful about not only which therapy, but which therapist you choose!

6) Does the therapist allow you to be present?

Be very wary of anyone who won’t let you watch, even through a one-way window. What are they trying to hide? What do they tell you about it? What does your child communicate about it? (And I don’t mean only verbally. A child that is obviously unhappy or stressed out after a therapy is a Big Clue.)

Make sure YOU stay in control of what is done to your child. Their welfare is at stake. A therapy that doesn’t suit them, or that has goals you’re not comfortable with or that you can see aren’t helping your child, is one to exit as soon as possible.

I hope this helps.

Autistics and Their Allies Getting Together

We on the spectrum are unfortunately all too familiar with the autism-negative parents and their groups. You know who I mean I’m sure - the ‘curebie’ crowd, the ‘hate autism’ ones, the ‘autism stole my child’ and ‘autism is an epidemic/brain damage/worse than cancer/I’m going to rid my kid of autism come hell or high water’ types. We all know and dread these people.

But a Facebook post not long ago, by the mother of an autistic child, who’d been ejected from an autism parents online group for taking a more positive approach to autism, and the response from some similar-minded parents, made me aware of something that’s been growing in me for a while. Namely, the feeling that there are far more ‘autism-positive’ parents out there than most of us are aware of. Some of these parents are on the spectrum too, but not all by any means.

I have encountered such parents now and again, over the last several years, but they always say things like “well, I’m a rare breed”, or “I’m in a tiny minority”. And given that most of the noise about autism is being made by those negative types above, or a misinformed and/or seemingly tame media, it’s understandable why they think that.

But I no longer believe they are. I think they exist in far greater numbers than either they, or we, suspect. They don’t usually seek the limelight, or go on ‘crusades’ about (against) autism, so it’s easy to overlook them. They accept their kids as they are, and don’t make a huge drama of their autism, to them, it simply is.

They may use various techniques, therapies or supports to help their kids grow and develop, but they don’t bombard them with the kind of harsh therapies we all deplore, or even too many of the not-so-harsh ones. They are simply quietly bringing them up in an autism-positive environment. And they are really, really refreshing to meet.

They’re open-minded and willing to listen to adult autistics, in fact it’s often their doing that which has helped them to become what they are, and to have the courage to shun the mainstream mindset on autism. Others seem to have come to it by themselves, with the words of autistic adults just confirming their ‘gut feeling’.

I believe it’s time for all these autism-positive parents to join together, to form groups both online and in real life, to share their different mindset and support each other, to liaise with adult autistics and advocate whenever they can for a more positive approach to autism and the elimination of such atrocities as bleach enemas.

To present, in other words, an alternative to the usual rubbish we see out there on autism, for the general public, the media, and other parents - who might be new to all this ‘autism stuff’, and really struggling, or who have been in it for a while, and are unhappy with it but don’t know of anything better.

In fact, it’s already started happening. As a result of the post I mentioned above, that mother decided to start her own group on Facebook. It’s called Autistic Allies, and it’s a place where autism-positive links and references to websites etc can be posted. There are also some other groups intended more for support, and parents actively working to see the whole bleach horror, for instance, made illegal. And whether these parents are NT or autistic themselves doesn’t seem to make much, if any, difference to their approach.

Let me be clear here – in promoting these groups, I’m not saying autism-positive parents should be thrown out of the ‘mixed’ groups that already exist on Facebook, where parents and autistics already meet and give each other advice and support. I see them as an adjunct to them, not a substitute.

So what do these groups look like?

They of course have to be careful not to be taken over by the ‘other’ sort of autism parent, so their ground rules have to be ultra-clear from the beginning.

THOSE WHO AREN’T WELCOME IN SUCH GROUPS

- anyone supporting Certain Autism Organisations (you know the ones I mean!). Initial ignorance of their true agenda might be accepted, but if they continue to support them AFTER being informed, out they must go.

- anyone espousing a ‘cure’ for autism, or posting links that lead to pages or organisations promoting it, especially those involving bleach and the like.

- anyone who advocates ABA or similar therapies.

- anyone who is into ‘pity parties’ or the ‘poor me’ thing, for having an autistic child.

- anyone who insists on normalisation or ‘being indistinguishable from their peers’ as the only worthwhile goal for their autistic child/ren.

- anyone who is negative about autism in any way, eg referring to it as a disease.

THE POSSIBLE OBJECTIVES OF SUCH GROUPS

- supporting each other in their autism-positivity.

- working on ways to get the autism-positive message out to the general public.

- working on ways to enable their autistic children to be the best damn autistics they can be, ie the ‘maximisation’ approach.

- whenever possible, reaching out to ‘new-to-autism’ parents who may be confused as to what is the best way to help their autistic child/ren.

And of course, last but certainly not least -

- listening to autistics, both adult and if possible teens and children on the spectrum, with an open mind, and liaising with them wherever possible.

Up till now autistic advocates, even collectively, have felt like a lone wolf crying in the wilderness, while the autism-positive parents have largely kept their heads down, perhaps not wanting to attract negative attention from the ‘other’ type of parents, or just getting on with their lives.

But autism-positive parents and adult autistic advocates are natural allies, and I feel it’s time to more and more actively work together, in order to change the public ‘conversation’ about autism, to change government approaches to autism, to change EVERYTHING about how autism is talked about, thought of, approached, ‘handled’ and dealt with, in every sphere of life.

Do these groups represent a turning of the tide on autism? I believe so. I hope so. I believe we can do this, and we will do this. Together, we can change the world!

That Autism 'Suffering' - Part One

A while back, a friend of mine was sent an email by an autism parent, angrily reproaching him for trying to stop autism parents doing certain treatments on their autistic kids. He claimed, as many such parents do, that he and others were simply trying to "stop their pain and suffering".

This idea of autistics ‘suffering’ is something that bugs me. I feel it needs more attention. It's a big issue, I've realised, so I'm going to split it into three parts.

In this part, I ask what is it that parents (and all the autism 'experts' and autism industry that caters to them) are seeing, when they say their child is ‘suffering’? (And please note here, I am NOT talking about those who use various therapies in service of what I call the 'maximisation' approach, but rather those who form what is not-so-fondly known as the 'curebie' brigade, who take the opposite or 'normalisation' approach.)

Firstly, there seems to be an assumption on the part of these parents (and others) that simply being autistic means an individual is ‘suffering’. Sometimes they appear to think this is so through having observed some aspect of their child's behaviour, e.g. frequent crying, meltdowns, or the child's frustration when they can't communicate. So they think, "well, this is caused by my child's autism, therefore if I can get rid of the autism, I will relieve their suffering." That autism is fixed at the genetic and neurological level either isn't understood or isn't accepted, nor do they seem to consider that there might be specific, removable causes for that behaviour, i.e. some other (and easier) way to alleviate their child's difficulties that doesn't involve attempting to remove their autism wholesale. They 'have' to eliminate the autism, they believe, and so anything and everything that might achieve this is okay. Some of what they do is patently useless (hyperbaric chambers? worms? really?), other stuff alleviates some distress in some cases, e.g. gluten free diets (though only, it seems to me, where there are definite physical signs of ill-health), but don't rid us of our autism, per se. Yet other treatments, such as bleach enemas, are exponentially more harmful. Parents who take this approach often seem to feel either that a 'temporary' suffering is necessary to a long-term 'solution', or - more drastically, in some cases - that they'd rather see their kid dead than autistic.

More often, however, the underlying thinking seems to run like this - "If I was autistic, I'd be miserable. Therefore, they must be too, and I have to do everything possible to eliminate the autism, so they can be happy." The parent thinks, for instance, that a child who spends a lot of time alone must be miserable, because they would be, if they had to be alone that much. That we might have different needs, that we might not only be perfectly happy alone, but in fact need large chunks of solitude in order to 'recharge' our emotional /social/ physical batteries, so we can go out into the world again, never seems to occur to them. Or if it does, they take that somehow as further 'proof' of what's 'wrong' with autism.

These above beliefs, in turn, combine with another belief - or simply an assumption -namely that autism itself is a bad state. It's 'abnormal', and therefore 'of course' those with it 'must' want to be relieved of it. Because being 'normal', i.e. NT, is not merely superior, but the only 'right' way to be, and only 'normal' people can be happy. Right?

Wrong.

And yes - before anyone points it out - I do accept that many of these parents are simply ill-informed, tragically caught up in the whole 'defeat autism' thing, and are genuinely just trying to do the best they can for their child. I know this. Nor am I denying that being autistic often means experiencing pain, frequently, and rather a lot of it. I wrote a post  here on just that recently. However, I believe that our pain is not through being autistic per se (i.e. the different way we think, feel and react to the world, which forms the core of our autism 1), but through difficulties that arise out of that different perception, or 'co-morbids' associated with autism, and/or - most especially - other people's reactions to our autism. Yes, it can be difficult to separate out all these things, but I'd like to try, so as to tease out the real causes of our 'suffering'. They seem to fall into two main groups, and in the next two parts, I will examine those.

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1 It has been said (though I can't remember by who) that left alone in a room, our autism 'disappears'. That is, we're okay until we have to interact with the world. It's then the pain and suffering starts.

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.

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.

Normalisation vs Maximisation

A while back, I posted a piece on 'Normalisation' vs 'Teaching of Skills'(here). At the time, I knew that the latter wasn't a very good or even inclusive way to describe what i meant by this, but I couldn't think of a better word. Now I have. I've decided to call it 'Maximisation', as I feel this fits best what I mean. This is how I see the difference.

Normalisation is when parents (for instance) reject the child's autism, and see it as a 'tragedy', and become hell-bent on eliminating it, or suppressing all sign of it, no matter what the cost. While I am sure they (usually) mean well, it's my contention that they are mistaken in their belief that the autism can and should be eliminated (as opposed to specific problems, such as communication difficulties, lack of toilet training, etc). We all know instances of the horrors this approach can lead to, I'm sure.

Maximisation, on the other hand, is when parents (for instance) totally accept the child's autism, but want to maximise their child's happiness and chances in life as an autistic person, through various therapies, whether they be physical, social skills, biomedical, whatever. And it's my feeling that many parents are quietly going about things in exactly that way, despite the 'doom and gloom' messages being trumpeted by the big autism organisations.

I guess there are no prizes for guessing which I feel is the best approach, and the one most likely to lead to both the autist's happiness, and that of the parents, in the long run (less stress and expense).

Behavioural Therapy - 'Normalization' vs 'Teaching of Skills'

Parents who are considering behavioural (or any) therapy of any kind for their autistic children need to ask themselves a crucial question – what is my motive for this therapy? What is the goal I want to reach?

There are basically two approaches to therapy, and hence two radically different goals: -

1) NORMALIZATION. This approach takes the view that autism is something terrible, a scourge, a deviation from the norm to be eradicated at all costs. All outward manifestations of it must be somehow ‘scrubbed’ from the child’s behaviour, so that the child at least appears normal, and ‘indistinguishable’ from their peers.

To effect this, the goal is to get rid of anything that ‘looks autistic’, in one way or another. This includes the repression or denial or ‘therapising away’ of such things as toe-walking, hand-flapping, monotone voices, long periods of time spent in special interests (categorised as ‘obsessions’, and therefore pathological), long periods of solitude (categorised as ‘anti-social behaviour’, and therefore again pathological), symptoms of sensory overload, the lining up of toys or other possessions, or indeed any kind of stimming.

2) TEACHING OF SKILLS. This approach takes the view that autism simply exists, and is neither good nor bad, but does present specific handicaps that the child can be helped to overcome, by the teaching of useful skills and knowledge.

These skills can start with things like basic communication and toilet training, and how to feed, bathe and dress themselves. The parents or therapists can then move on to teaching the child such things as how to use visual aids, follow school rules, or play with other children. As the child grows older and into adolescence and young adulthood, further skills can be added – how to manage money, interact with the opposite sex, cope with university/college, or live away from parents… The list could be endless, but the point is that autistic children WILL NOT LEARN these things without help, or will flounder severely as they try.

There are of course people who do both these things, considering the teaching of skills as part of ‘normalization’. Still, the general rule applies – they consider making the child ‘normal’ the over-riding goal, and the ‘skills’ are just a part of that. Whereas those who take the second approach, are very little concerned with such outward manifestations of autism as hand-flapping or toe-walking or stimming, and far more concerned with assisting the child to acquire concrete skills to help them cope with the world.

I also accept that the parents who take the first approach believe they are doing what is best for their child, that they act out of concern. But they are starting with the belief that it’s a terrible thing to be autistic, they generally suppose the child must be miserable simply because of being autistic, and so ‘must’ be happier without the autism. There’s a whole weight of assumptions there I won’t go into, but I would ask such parents to consider this:-

Autism is not a ‘layer’ obscuring the ‘real’ child. It IS the real child. Autism is an intrinsic part of themselves. To teach the child to hide/conceal/suppress/deny this real self and all its outward manifestations, is to force them into a foreign mold of ‘normality’, to feel that their ‘core being’ is rejected by those who claim to love them, and to teach them to devalue and even hate that true self. Low self-esteem, depression, and anxiety are virtually inevitable. Some young autistic adults even fall into alcohol or drug addictions, or attempt suicide, as a result. Moreover, if the emphasis has been too much on ‘normalizing’, and not enough on acquiring those skills and information the child really needs to cope, they can fall into the abyss of executive dysfunction (ie not having a clue how to organise or care for themselves), and their lives end up a mess, with consequent despair and self-hatred. Is this really what you hope to achieve?

Autism is for life. Yes, teach them whatever you feel they need to cope with the world, and to improve their lives. But young autistics also have the right, and the need, to go out into the world knowing they are valued and loved as they are, for all that they are – INCLUDING the autism.

11 April 2012 Footnote :- I have decided to call the 'teaching of skills' approach 'maximisation'. I say why here....