This is Autism

This post is for the This is Autism flash blog, Monday, November 18, 2013. I encourage readers to submit their own posts about hope and positivity through this link:

This is my daughter Beth, 5.5 years old, who has autism:

Beth as a Farmer, Halloween 2013

Beth as a Farmer, Halloween 2013

Beth is a warm, sweet, and fun little girl. Autism in our family means Beth:

  • is a sensory kid, who is integrating her senses in her own time
  • understands more than she can speak, including empathy
  • needs support to learn new things, but with the right supports can learn almost anything
  • shows us her unique developmental path, when we look for subtle non-verbal readiness signs
  • is growing more independent and developing every day, especially when we allow her space to grow and foster her interests
  • has her own ideas about the world, when others have the patience to wait, observe, and listen
  • likes to stim (flapping, vocalizations, watching movements such as spin) and it helps her relax, and lets me know when she is uncomfortable
  • loves her family and friends, and shows it by smiles and wanting to “just be” with them
  • is my daughter, but she is also my greatest teacher

Autism in our family means the above and much more.  But it does not mean the panic, hopelessness, and fear that Autism Speaks wishes to spread in order to fund their agenda. Autism Speaks does not speak for us.


5 thoughts on “This is Autism

  1. I agree about Autism Speaks.

    And, HOLY SMOKES is she CUTE! WOW!

  2. Pavel Kasprzak says:

    I am new to the topic and I need help with understanding the basics. 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 behaviorist 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 behaviorist 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.

    Both ABA and Early Start Denver Model seem to share approach like described. Is there any other real choice?

    • grahamta says:

      Yes there is. Floortime through Play Project or RDI (relationship development intervention) are different approaches, and we use a bit of both and it worked to get the back and forth interaction going and help her initiate. Not cheap though. We actually do use ABA in that we use what motivates her, but for for a long time we gave her 2, then 3 choices randomly mixed to help her get the words out in naturally motivating situations (best tip we ever got was to do choices and it came from a floortime therapist, not aba). Music worked too, so we used that for imitation, getting attention, working on songs (which she eventually sang in their entirety after doing fill-ins for years) and that helped with clarity of speech. Basically, learn all you can about floortime, rdi, and anything else you can get your hands on. Then use your gut and change when things are not working. As for what your child is thinking, it became clear for us what she was thinking years later when she got the words out. Asking to watch videos over and over was because she was memorizing them, and now that she has done that she will allow us to ask her questions for a speech lesson. Tantrums to leave places were a combo-overwelmed sometimes, but also the inability to tell us what she needed to help her relax. Now she can tell us better and we can get a bit of negotiation going…okay, I know you want to go in the car, but we will do this and that first. She accept it now. Many of the behavior issues worked themselves out with time. Many of the perplexing things became clear with time. I believe you need to start with their interests, whatever they are, and figure out how to let them enjoy those interests as either a break from demands, or as a springboard for eventual growth (which may take years). The sensory stuff does chill with time and they learn coping mechanisms. I view my role as supporter for the anxiety and sensory issues on outings and in social situations. Read Judy Endow, Painted Words…she describes her unique sensory experience and what she was doing when she seemed to zone out as a young child. It was enlightening. My kiddo is repeating experiences from when she was as young as 2 now…she remembers, they are not lost….they have a totally different developmental path and take longer to work out the sensory issues (like staying in baby stages with sensory exploration for a long time). Best of luck. It is a hard road, but keep thinking, reevaluating…you will do great, I can tell from your thought process in this comment.

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