“All About Autism” by my 8 year-old son.

Today my son and I have decided to do a blog post together, about autism. This has come from recent discussions on what blogging is and what I blog about (originating from a  discussion about his teacher’s school blog). I figured it’s also a good way for me to gauge where his perceptions on autism currently lie, as well as to share my son with you. This is the result (italics are my questions):

What do you want to say about autism?

Autism can sometimes be better and sometimes be worse.

What do you mean?

Because you can know more stuff, and sometimes you don’t know what to do.

Like what?

Extremely hard maths problems.

But is that because of autism?

I think, I infer.

Do you like having autism?

Yes, sometimes I like it, sometimes I don’t. Autism can be sometimes good for your brain to think, and sometimes you can make a lot of mistakes with your brain, sometimes.

Is there anything else you’d like to say about what it’s like having autism or what you think of autism?

Autism is sometimes cool and sometimes not cool. I wish we had more so I could learn all about autism. It can sometimes be misunderstanding… I was sometimes talking you don’t understand and sometimes talking you do understand, mostly yes, and least no.

[He’s wriggling and flicking his hands.] What are you doing there?

When I flick, when I jump up and down on my bum bum, and sometimes I wiggle my legs, mostly the fingers and leastly the hands.

And why do you do that?

Because that’s what I do when I’m very happy or excited, about half yes and about half no.

What do you mean “half yes and half no”?

Sometimes I can just smile and sometimes I do this.

Do other people do that when they’re happy?

I don’t know, do you know?

When I’m happy do I flick my hands about?

No. Sometimes, about, you should only do that, people with autism should slow down with about a quarter to none… so sometimes you can flick, about the maximum you can do it is a quarter of the time, and the minimum is none of the time.

Why can’t you just do it all the time when you’re happy?

Because it can ruin the chair or the couch.

Any other reason?

Because it can be annoying for autism people, but especially without autism, or for humans.

Why do they find it annoying?

Because it can be just not understand what they want, the parent doesn’t know what they want.

So what’s a good way to let parents know what you want then?

Very very happy.

What are your favourite things?

About the human bodies and space, space about 1% more and the human body 1% less or the space more or a weeny tiny bit more.

And what do you like the least, what don’t you like?

I don’t like [brother] going to my room. Going upstairs, sometimes a bit less, and [brother] going to my room 1% more… no, it’s not 1% more, it’s about 40% to 60% more or a weeny tiny tiny bit more. If [brother] destroys my stuff, I’ll be very very angry or sad.

And what would would you do if you were very angry or sad?

Tell my Mum and ask me to buy a new thing, if she says no I’ll still be very very very very angry or sad, if she says yes I’ll get very very happy or excited.

Is there anything else at all that you want to share about yourself?

No. I want the title to be “All About Autism.”

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9 Responses to “All About Autism” by my 8 year-old son.

  1. Jon Brock says:

    100% brilliant. Thank you for writing this.

  2. Maria Klothos says:

    Thanks for sharing your own thoughts about Autism. I’m going to share this because I think other humans should know All About Autism too.

  3. suburp says:

    Thanks for sharing!
    I read this to my son who is also 8.
    He liked it. 🙂 we talked about how its good to know and to think about one’s autism so you can explain it to others and also understand what is happening to you sometimes. I don’t usually share much blogthings with him so not to overwhelm him but It was great for him to read some words of someone his age !
    We did understand everything but then, we are all different. And we don’t all like maths! 🙂
    great post, thank your son from us!

  4. Thanks for the lovely comments Jon, Maria, and suburp, I’ve read them out to my son and he’s really happy that people like his post 🙂

  5. Marian says:

    So there are se gems in there. And i can hear my son – now 10 – in all that. Like a struggle to find words and there are tangents and cul de sacs and so sometimes we just making words up – but if you care to listen there is quite a lot being conveyed.
    Boyly is a personal fave – not girly….
    Or Babylish – for babies etc…
    Always reminds me that the language part of autism
    Is so significant – it is on our case.
    Thanks for that post – I’d love to hear more from your son

  6. Marian says:

    Also inspires me to approach my son about his autism as I’ve never been through a disclosure process with him

  7. Pavel Kasprzak says:

    Hi!

    Please, excuse me bothering – a bit off topic. I am in need, I feel it is kind of urgent and I think I may share some insights that might be of interest.

    My little over a year old son has just been diagnosed with autism and I myself struggle trying to understand what is really happening inside that little head, before the therapists lay their hands on him. Digging through the literature (and I try to read professionals) I find it confusing. It seems autism is not only not understood (this is what everybody admits) but also ill described or perhaps misunderstood. For me there is lot about mistaking sheer correlations with causes and effects. The therapies follow this conceptual mess and focus mainly on shallow behavioristic approach (easy to measure in research and evaluation – this is one of the reasons, I guess), not even trying to touch the “nature” of the thing – whatever it might be and regardless how far we are from understanding it. Well, we should at least try before we start curing it. Otherwise we could easily end up like treating homosexuals with electric shocks (which worked sometimes by the way). I did try and what I found out makes me scared of the therapies proposed for my son.

    They say for instance this and that part of autistic brain is underdeveloped. Few of those findings (if any at all) describe newborn infant’s neural structure, nothing (to my layperson’s knowledge) is known about prenatal stage. Most of those observations (if not all of them) were done on persons whose autism had already been diagnosed. This recently published research concerning eye gazes of infants 2 trough 6 months old who were later on diagnosed autistic is an outstanding exception. Well, if to picture a child being from birth kept in some dark cellar, completely isolated from just any sensory stimuli, it is easy to imagine the child would develop “abnormally” (if it really could survive). It is also quite natural to expect this “abnormality” would be observed morphologically as neural structure altered some way; because we know well enough that such changes may occur and are visible for instance in the brains of intensively practicing musicians and even London taxi drivers. They do not become taxi drivers because their hippocampuses are lager (which was observed) – it is rather the other way around. Similarly to this dark cellar situation many of the morphological features of autistic brains can just be results of this sort of sensory dysfunction autistics suffer from – even while some of them probably cause that dysfunction. We do not know which is which. I am not trying to suggest autism can really be compared to a dark cellar and total sensory deprivation. I do not have the slightest idea actually and, as I read, nobody does. I just think it is quite possible autism is about some twisted sensory perception being to some extent comparable to that cellar. I think that might easily explain morphological changes in neural structure and as Ockham’s razor principle suggests we should rather not make any unnecessary assumptions if this one seems enough. We do not have any proofs that what we are dealing with is massive and broad damage in neural structure that affects social behavior, empathy and all other things described as autistic.

    Autism psychologically is seen as kind of a social disorder. Autistic kids prefer objects than living persons, they do not communicate, sometimes they do not talk etc. They have those weird gestures and other things. This is described as “the nature” of autism. I do not buy this description at all. The reasons are pretty much the same as described above. I think this is yet another effect erroneously seen as the cause. The thing is my no doubt autistic kid shows something quite the opposite. But of course the therapists know better. Here is one of the situations.

    The kid is watching a piece of video. It does not happen often as we ourselves do not watch tv at all and we definitely do not want our kids, “normal or autistic”, to be exposed to it. Anyway, the kid is watching a nice and – I would say – soothing cartoon. His eyes and face “absent” in this typical autistic way – just staring. I keep trying to add some “human factor” to it and from time to time I would point at things on the screen saying something like “look, what a nice little puppy!” The only effect is I simply disturb, so the kid slightly moves his head to see well. An obvious idea had once crossed my mind and I grabbed a camera and filmed his mom – looking at the camera lens, calling his name out, jumping into the field of view, making faces and so on. We played it back to see our autistic son all of a sudden “normal” – smiling, looking straight into his video-mom’s eyes, laughing, reacting more emotionally than “typical”, non-autistic child would do. I would say he just saw his long not seen beloved mom. To make things weirder, his real mom sat in front of him, close to the screen, doing exactly what she did on film – and the kid would never even gaze at her.

    I have a plenty of other examples like the above. This single one – in my opinion – well enough falsifies the view that my son prefers objects and does not react to living people. He clearly fancies mom way more than anything else – if only it is on the screen. There are also other ways to “reach him”, but this one is best and might be enough. I could design some videoconferencing system to communicate and I bet we would be both satisfied. However the therapists say no – for them “video-mom” is not a real one and that means end of discussion. Normal reality is the concept, which is at stake here. I of course do share the therapists’ understanding of normality. The thing is my son’s reality is not this way. What is normal for me, seems equally weird and abnormal form him as his behavior looks weird and abnormal for me – this is the only thing I know for sure. His reality is different in a way that I do not understand, but am willing to respect rather than to risk making harm to the kid.

    I see many evidences suggesting something is really weird with my son’s perception. I once saw him getting quite heavily burned by the fireplace – he did not react to it at all. We got scared thinking he actually does not feel pain and this suggested some severe damage in his neural structure (the therapists of course node their heads hearing it – yeah, this is typical for autistics). We now know – we see it daily – that he feels pain “properly” but sometimes (quite often as a matter of fact) he does not “pay attention”, whatever it means. When he gets focused on something – some toy for instance – he sort of cuts the background off, concentrating on his main task (foreground process) so much that he is unable to perceive any other stimuli. I also guess (although it is way harder to establish for sure) that the same happens while he is in what seems to be as sensory “overflow” when he withdraws completely. Well, he might be actually busy with some thoughts and not overwhelmed by chaotic noise, which I myself suspect. This is what my autistic friends often suggest as an explanation – I just do not know, I only have this overflow impression. Many other things look weird, like his peripheral vision etc.

    So I guess the thing about mom on video vs. the real one is some sensory problem. Something makes it hard for him to tell the real mom from a real environment, while the same task is way easier on the screen. My understanding is that he sort of sees “pixels” instead of composed images, so to speak. The chaos he perceives might sometimes be a source of real pain and definitely makes it difficult or even impossible to function “normally”. I try to picture a brain trying to deal with such chaos – possible workarounds similar to those blind people develop to handle somehow. For me many autistic symptoms are just things like that – learned workarounds and not “the very nature” of the syndrome. I also guess the more my son fails to communicate in real environment today the more likely he is to loose interest in such communication tomorrow – finally he is going to end up as completely developed and mature autistic to satisfy the scientists and therapists diagnostic schemes. So far though – in his rare moments when we can really reach him (using video or other tricks) he demonstrates genuine joy of communicating, interacting, living with etc. For me then it is sort of a race against time – because I know what is going to happen if I fail to find good ways to reach him in his mysterious, unknown, I think chaotic world. If I fail to do it early enough.

    The gestures he makes. I watch them closely. They make no sense and are seen again as evidences of severe neural damages. Well, it is only for me that there is no sense. I just do not get it. The kid does this, anyway, so for him there must be some sense to it – otherwise why would he do? What makes it more no-sense than my bad smoking habit for instance? I can see the patterns. For example I see he does it when there is noise around. So there is not only a reason but also a purpose for him in doing so – it clearly has a soothing effect on him. Most of those gestures involve hugging his ear against his arm. This I know – it is simply a physical pleasure for him. Whenever I put my hand on his ear he grabs it and holds hugging. I do not know what matters – a touch or this white noise he can hear then as if from a seashell. It only takes a while before he starts looking into my eyes, still holding my hand and he could actually hold it very long. This scene does not look weird, sick and unnatural anymore. It is a scene of tenderness – especially beautiful because clearly mutual tenderness is here. The gestures – by the way – are really elaborate and he keeps developing them so that following a set of few distinct scenarios they become more and more complex. He executes them really carefully. This is what he invented on his own and – I would say – created. It is “choreography”, a dance – a genuine art as a matter of fact – a piece of art involving tools and means that he can have on his disposal, being just one year old.

    Now, I am being told to try and turn his attention to something else, whenever I see those gestures. What?! For what purpose, to start with? Because it is “abnormal”? Even if it is – so what? Plus – imagine having an alcohol hangover: headache, dizziness, fears perhaps etc. The last thing you need then is extra sensory experience, right? Now, picture someone trying to turn your attention by playing drums… I believe many of the therapies might as well be simply cruel. They might be tortures as a matter of fact.

    Most of the therapies are focused on shallow behavioristic effects. Do not leave toys within the kid’s reach – I am being told for instance. Make him – force him, to be a bit more specific – to ask whenever he wants any. Well, this can work, I know (as electric shocks did). But this leads straight to that sort of well known “autistic speech” – no emotion, elaborate, monotonous, as if second language, always practical. An autistic friend of mine recalls talking to his mom as really unpleasant experience. He learned to do it as an acceptable price for getting his favorite pancakes. He remembers his mom – he puts it this way – as an interface to a frying pan. However in those rare moments, when we can reach our son, we see him communicating for the sheer joy of it. It is yet another thing that is also ahead of him – to be trained to communicate in order to get things. It will happen for sure if things go as the therapies suggest. Or he might as well end up as mute autistic as one third of autistic population do – no matter, cured or not.

    I will be more than grateful if someone points at some other way. Is there a help we could get? Any ideas? Any known “tricks”? And I would like to warn the others – we can hurt our autistic kids trying to help them. Observe closely, do not trust experts who do not observe or even listen while daring to say they know better.

  8. pavlakess says:

    Thank you for sharing this very interesting post. I know many people who flick their hands when they are happy, and sometimes when they are not so happy. I’ve tried it once, but it made my hands tired. So I only smile, when I’m happy. This post was a brilliant idea mum and son!

  9. Pingback: First blog at the age of 40 | Biracial life, kids, hair, food

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