Autism is a growing epidemic. My son is just one boy with autism. He is now nearly seventeen years old. For all but the first fifteen months of his life he has had very severe, non-verbal autism with severe learning disability and associated sensory problems. He also has many of the chronic physical health problems that are often associated with autism such as extreme gut sensitivity and acute intolerances to foods, environmental chemicals and pharmaceutical medicines, to name but a few.
My son has improved radically in his teens but this belies the fact that he effectively lost his childhood, not primarily to his autism, but to the mishandling of his autism. I do not make this statement lightly nor do I make it with blame. It is just simply a fact that virtually every encounter that either my son as an individual, or we as his family, had with the whole panoply of provisions and services that were ostensibly there to help us made both his condition and our situation very considerably worse throughout the whole of his childhood.
Clearly this was never the intention of any individual or institution working with us so an outcome such as this indicates that something, somewhere in the processes of approaching severe autism was very wrong.
There have been two occasions in my son’s life where I have withdrawn him as far as feasibly possible from the system of provisions that are supposed to help people like him and us, and both these withdrawals halted and reversed regress and instigated and sustained progress.
From the age of fifteen months, when he began to decline into autism, I was continually alerting a variety of GPs to the links between his behaviours and certain dietary and gut-related factors. I was consistently ignored and over-ridden until at the age of three I took matters into my own hands by researching the relationships between diet, antibiotic use and autism. By removing what I could clearly see were problematic foods from his diet and by instigating an anti-candida regime his drastic decline was almost immediately halted and significant improvements quickly became apparent. My ‘lights-on-but-no-one-at-home’ son regained eye contact, facial expression, interaction and reasonable sleep, to name but a few.
Between the ages of four and seven I worked with him educationally at home, where he improved to a point where entry to school seemed to be a feasible option.
From the ages of seven to ten, during which he attended an autistic school placement, he again declined radically. By ten he was an unhealthy, anxious wreck and I made, for the second time, the decision to withdraw him as far as possible from the mainstream service system by teaching him at home and reducing his contact with multiple professionals to just one service, psychology, where our psychologist effectively became his service key worker.
Under this regime he improved quickly and dramatically and has moved slowly but steadily forwards ever since.
The passage of so much time has now enabled me to have some distance from the worst of these experiences and to look back with an analytical eye at the factors and patterns that led to them, which I present below. My son is just one autistic person and my observations are drawn specifically from our own individual experiences but they may be useful to the understanding of a broader range of autistic persons and autistic issues.
These observations fall into a matrix of ‘As’ and ‘Is’, although this is a coincidence rather than a deliberate composition. These mnemonic factors encapsulate all of my son’s prime difficulties and also explain the acute problems he had in fitting into existing ‘boxes’ of educational and service provisions. These six key factors are...
Autism
Intervention
Agency
Interaction
Anxiety
Inhibition
Each one of these factors leads directly on to the next and, at any given stage, the mishandling of one leads directly to a negative consequence within the next (with the converse, of course, also being true). In my son’s case the effect was like dominoes going down, leading not to improvement but to the collapse of his physical and mental wellbeing.
Autism.
There is still so little known about autism, specifically in the way that it impacts so differently on individuals, that it is surprising how categorical systems of provision are in the way they deal with it. Right from the beginning of my son’s decline into autism there was a pronounced correlation between the fluctuating condition of his gut and the fluctuating appearance of his autistic symptoms. These correlations are described in three articles on my website entitled Gut Reactions I, II and III so I won't go into them in further detail here. See....
http://www.gaiacharis.com/site/index.php/disability
On a recent visit to my son’s consultant gastroenterologist he said that my son was one of the first children he had ever seen where a parent had described the specific behavioural connections between gut sensitivity, diet and behaviours that I had but that over the ensuing years numerous similar cases had presented to him. The recent publication of gastroenterologist Dr. Andrew Wakefield’s book ‘Callous Disregard’ evidences the same pattern and numerous parent-led organisations have done the same for many years.
But in my son’s early years the information I was giving was wholly disregarded throughout our encounters with a wide variety of professionals and my son went on getting sicker and sicker and more and more autistic. Being an ex-Special Needs teacher I worked with my son to try to keep him ‘with us’ but this wasn’t effective because a major underlying cause was not being addressed and we made no progress until I took action to improve his extreme gut problems.
The reality was that what I was reporting with regard to him did not fit into any existing frameworks of conventional professional understanding and so the blanket response was to discount and ignore my ‘knowledge’. No-one seemed able to genuinely, openly listen and assess what was actually happening in its entirety.
It’s a strange form of denial and the seriousness of it becomes especially apparent if we ‘turn things around’. Anyone who has read my ‘Letters from the Frontline of Autism’ will know I am a great fan of this process as a sure-fire method for the exposure of faulty thinking.
In this case I would ask the reader to consider what professional judgement would be made about a parent who continually discounted or ignored adverse symptoms that their child was exhibiting, no matter how clearly or how often they were pointed out to them. They would certainly be deemed to be ‘in denial’ and if they persisted with this behaviour in the face of their child declining they would probably be brought to the swift attention of the Social Work Department, and quite rightly so.
And yet this was exactly the professional response that I habitually encountered regarding my son.
A subsequent diagnosis of autism did not improve things, in fact it made them worse because the label swiftly became prescriptive rather than assistive. To illustrate this effectively we need to look at the next domain of Intervention but before we move on I want to summarise the problem that lay at the heart of all our future difficulties.
This primary problem was that what was happening to my son and the ways it impacted upon him were never viewed in TOTALITY. Whatever fitted within the known boundaries of ‘autism’ was accepted and could be system-processed, whatever didn’t was just left discounted, hanging in the breeze of inconvenience. Because of this, my son’s passage through services and school were doomed from the start. The reason for this becomes clear when we look at the next factor of Intervention.
Intervention.
‘Intervention’ is such a canonical term in autism that questioning it is almost a heresy. But I am going to question it on a variety of counts.
Firstly, because I believe passionately that what we call things really matters because it dramatically influences both our perception of the thing we are naming and also the ways in which we subsequently enact the thing we have named. It also raises the issue of who has the right and the power to define these things.
So with regard to Intervention let’s look at exactly what it means.
‘ Intervention...to take a decisive or intrusive role in order to determine events’.
Collins Dictionary.
Let’s start with the last element in this and work backwards. Clearly in the case of the autistic child the ‘event’ that everyone wishes to determine is that their autism is minimised as far as is humanly possible. This is beyond question. But it is the other elements in the definition that can become problematic if the autistic child’s difficulties are not viewed in totality...someone has to decide exactly how they are going to intrude or intervene in order to determine events. If that someone or someones make decisions based on incomplete knowledge or understanding then the outcomes can go seriously awry, as they did in my son’s case.
In his case there were four key factors that needed to be considered before any strategies of working with him were formulated and most importantly they needed to be seen as intrinsically interlinked. These factors were:
Physical health
Intellectual impairment Social impairment
Coping impairment
The emphasis on assessing and educating a child with autism falls very heavily onto the intellectual and social domains and where physicality is considered it usually relates to sensory issues. But none of this really factors in what for my severely autistic son was, and still is, his greatest problem...his drastically impaired COPING abilities and the interlinking and acute effect that any stress has on his body, particularly his gut. Because his autism flares when his gut is sensitised he can rapidly descend into a downward spiral of regression that can only be halted by the removal of the stress and assiduous management of his gut sensitivity.
On every occasion when he/we engaged with ‘Interventions’, both therapeutic and educational, the focus was entirely on cognitive and/or social advancement. Because these interventions did not acknowledge that he would not learn anything, either intellectual or social, whilst in a chronic state of anxiety they simply didn’t work, regardless of the type of method or strategy being employed. Worse, they made him physically sick which then further reduced his coping capacity, pitching him into the regression vortex.
As his parent I could very clearly see what was going wrong but my attempts to explain this were regularly labelled as ‘over-protection’ or inability to ‘let go’ of my child, problems which I know many other parents of autistic children have encountered.
The whole scenario repeated like Groundhog Day from Nursery through to end-of-Primary until, at age ten, I stopped the cycle by withdrawing him from school...a decision which brought intense adverse pressure onto me from a variety of professionals despite the fact that the school supported my decision.
Throughout the whole of his childhood years there was a generalised approach to him based on the ‘intrusive’ aspect of the definition of Intervention whereby professionals seemed to take the view that if they imposed their determination of outcomes on him for long enough he would eventually accede to them in the form of ‘desensitisation’ or, more colloquially, ‘get used to it.’. He couldn’t, he just was not equipped to do so, and the stress broke both his mental and physical wellbeing.
As a result I have come to question the whole concept of ‘Intervention’. Not the fact that autistic children need help and as much of it as possible but rather the rigid certainties that it is so easy for professionals to bring to what they are doing, especially when dealing with those who are non-verbal, whereby an interventionist agenda is imposed upon the child rather than working from and with the child, recognising that every autistic child is individually affected.
To understand why conventional Interventionist approaches had such a negative impact on my son I will look at the other four factors of...Agency, Interaction, Anxiety and Inhibition.
Agency.
Compliance with the demands of Intervention requires personal “Agency”, the ability to act, to make something happen. A morning’s session in a primary autistic classroom will, for example, be filled with activities based around ‘making things happen’.
But what happens if you are cripplingly, devastatingly afraid of making things happen? Look at it this way. Imagine your worst fear...spiders, rats? Now imagine that every day, every single day, someone much bigger and stronger than you arrives at your house, gags you and takes you to a place where you are forcibly put into a closed room filled with whatever you are most afraid of. Imagine that no matter how terrified you become, no matter how unable to cope you are, no matter what you do to signify your terror, that big, strong person guards the door and won’t let you out. And the big, strong person believes that if you just keep coming back to that room every day you’ll eventually get used to those rats and spiders, or, in the case of severe autism, you’ll get used to ‘making things happen’...but you don’t. In fact, you go on getting more and more terrified and every day when you wake up you know it’s going to happen again.
How does it feel?
Now let’s take a look at Interaction.
Interaction.
Now please imagine that as well as being afraid of making things happen you are also overwhelmingly, panic-inducingly afraid of other people, especially if they are large, noisy or unpredictable. In the light of this let’s look at an autistic classroom again...where there might be half a dozen other children who move impulsively or who may scream without warning, sometimes right in your face and on top of those there is one big person for every small person so the room is really pretty full of this other thing you fear....but remember you can’t tell anyone and those big people don’t let you leave, no matter how scared you get.
When we put the systemic demands of Agency and Interaction together we get ‘Intervention’ as my son experienced it. Intervention premised on an assessed need for cognitive and social input but with no equivalently rigorous assessment of his ability to actually COPE with the environment that was supposed to stimulate his intellect and sociality.
My attempts to convey this problem to a variety of educational and therapeutic professionals were thwarted by comparisons to those other mild to moderate autistic children in the class who could cope, or at least cope better than he did, leaving us stranded once again on the shores of pathological parenting as the only system-accredited explanation for his difficulties. Again, I am not alone in this experience. For a further elaboration please see my recent review......
This is what very severe autism is like and the approaches used with my son were clearly not an effective way to go about alleviating it. They were, however, the right way to go about making his autism a lot worse. The mechanism by which such a situation can occur can be seen in the last two factors...Anxiety and Inhibition.
Anxiety.
Through the years of my son’s school-attending attempts he never once managed to stay in the classroom for longer than an hour and a half and only once did he manage to maintain this from Monday to Friday because by Thursday, or sometimes even earlier in the week, he was in such a state of anxiety that it was impossible to get him either out of the house, or through the school gates if we made it that far. He always improved marginally at weekends and significantly in every holiday, only to plummet backwards once school started again.
Prior to his entry to school I had warned his teacher that if his anxiety rose too high he would respond by regressing. It had become apparent from Nursery age onwards that if he was pushed beyond his coping capacity (which was very minimal) then he would retreat to the only safe space available to him...inside himself. I had specifically requested that this not be allowed to happen as the results were devastating both for him and for me, who would be left picking up the pieces.
The anxiety situation came to a head when one of his class-mates came up to him, grabbed him by his clothing and screamed protractedly directly into his face. This, in an autistic classroom, may be unavoidable but what happened next was not. In direct contradiction to my advice he was forced to remain in the classroom to ‘get over it’. After some time it became apparent that he wasn’t going to and was brought out to me in an appalling state. He went into a drastic regression where he became totally withdrawn and stopped eating, sleeping and toileting...exactly as I had warned he would and it took two months of him being at home to pull him out of this.
Thus far there had been only my son’s anxiety to deal with. When I went to one of our group-practice GPs to register what was happening the utter insanity of a professional paradigm that can only operate from within its own closed confines and which appears wholly unable to process anything outside of it became apparent yet again.
The GP said firstly that he couldn’t understand why my son was having so much trouble at school when the other autistic children didn’t. He then said that my son should be medicated in spite of the fact that I had continuously reported his extreme adverse reactions to pharmaceutical medicines since he was a toddler. I patiently reiterated these reactions which included the appearance of a grey pallor to his skin, dark rings under his eyes, extreme digestive disturbance, the sudden appearance of bizarre behaviours, and on some occasions, his eyes rolling upwards as if he were about to fit. I emphasised the fact that medicating him would actually make my son worse by loading his body with substances that it couldn’t cope with.
In spite of this I was told I had no choice. I refused to medicate him, citing the fact that his consultant clearly stated that stress was the cause of the problem and that appropriate stress management was the way to deal with it because he couldn’t take medication.
Once again I’d like to reverse the perspective on this to get a clearer picture. Let us imagine that either I was administering some substance to my son that was producing these kinds of reactions or that I was allowing some third party to do so without doing anything to prevent it. This would clearly be child abuse and my son would be removed to safer care. And yet this was exactly what this Doctor was pressuring me to do.
Today I am ashamed that I let my son suffer as long as he did before I withdrew him from school and gave him a chance to heal. I feel I let him down. But the truth was that I was afraid of the consequences of defying this system that was palpably destroying him because my refusal to make my son sicker than he already was impelled this Doctor to set off a chain of events which exponentially increased our anxiety load by bringing us under the surveillance of a social worker. Recalling the fate of the O’Hara family, whose children were forcibly removed from them as a direct result of their constant advocacy in the face of an autism-blind system, illustrates that my fear was not unfounded.
It was not until I accessed my son’s files from all sources under Freedom of Information rights that I realised that the Social Work department’s presence in our home was never legitimate, which they well knew.
I cannot begin to describe the appalling toll that those years took on my son, on me and on my daughter also.
On the day I finally removed my son from school I took the photograph of school from the picture board that I used to communicate with him and brought him with me as I put it into the bin. Within months he was calm, happy, healthy and making daily progress.
Inability to see any other viewpoint, adherence to rigid and habituated responses, excessive systematization, inability to ‘listen’ and process new information...all these things are autistic symptoms.
How can an ‘autistic’ system possibly help a severely autistic child? And perhaps more pertinently why did all those people not see how both they and the framework they were operating in was, in its own manifestations, as ‘autistic’ as its clients?
After my son left school a NEPS psychologist advised the Dept. Of Education that my son should be returned to his placement because his school report showed ‘signs of progress’ and part of that report was cited to support his assertions.
His teacher had written that my son was always happy to leave the classroom and go either with her or his assistant to walk through the empty corridors and into the main hall which was light, spacious and deserted. Given that my son was chronically anxious inside the classroom this opportunity to escape hardly constituted ‘progress’.
My son doesn’t know about NEPS or systems or expectations. He can only go as far and as fast as his own coping abilities will allow and strengthening and improving that ability is a delicate business. If he is pushed too far or too fast his own coping mechanism will immediately engage....the mechanism of Inhibition, whereby he shuts up shop and retreats into the safe space of himself.
Inhibition.
Parenting and home-educating a severely autistic child has more than a hint of Zen about it. Most people have heard of the famous Koan ‘What is the sound of one hand clapping?’
Well, in our house, the equivalent would be, ‘What is the shape of non-learning learning?’
School didn’t work for my son and neither did conventional types of intervention because they are overt, visible and identifiable, all of which are anxiety-triggering and all of which will cause him to inhibit his responses to a greater or lesser degree, ranging from looking dreamingly into the distance to extreme and protracted withdrawal (although it should be noted that he never suffered any further devastating regressions after de-schooling and de-systematizing). Once he decides to inhibit nothing and no-one will stop him as he has no interest in rewards or inducements. Keeping him ‘present’ is best achieved by appearing to make no effort to keep him present, getting him to learn is best achieved by having no apparent learning agenda and progress is best achieved by appearing to have no desire for progress at all.
This is usually the point at which professionals and layfolks alike think I’m a trendy-lefty, tree-hugging, nut-cutlet educationalist. Far from it, it’s just the way it is. A decade of conventional approaches achieved nothing positive. Seven years of one-hand-clapping, non-interventionist, non-learning learning have achieved slow, steady and consistent progress with no regression. Either it happens this way or it doesn’t happen at all.
How we non-learn is never going to make it onto the school curriculum but then those autistics who can cope with more direct learning approaches probably don’t need it anyway.
We non-learn by making learning naturalistically part of everything, all the time. Admittedly it does involve a flair for improvisation not unlike that of stand-up comedy ( and sometimes it might look like it ) but once you get into it you realise that learning is everywhere, all the time. And it’s really not that difficult to access...a bit like letting it soak through the pores of your skin.
If I bring an identifiable learning activity to my son he will inhibit and so we utilise anything and everything as it naturally arises and at any time, we don’t non-learn by rote or timetable and best learning is often done in pyjamas at times when he is most relaxed and ‘open’.
‘Talk-about’ is everywhere, all the time. Motor skills are in the food cupboard and the garden shed. Songs and sounds come out of nowhere. We make sounds from the sea and songs from the songs of birds accompanied by spontaneous percussion with whatever is to hand. Socialising occurs as a natural part of life and so he’s happy to go with the flow. And it’s almost impossible to inhibit while you’re laughing so fun is a must in the facilitation of a non-learning learning day.
My son is just one boy and he is very severely autistic but I know from my contact with other parents both nationally and internationally that he is not unique in the extent of his difficulties. I have written this paper because I hope that analysing what went so very wrong for him may prevent other autistic children from suffering as needlessly as he did, and as we have as his family.
My son is now a happy and slowly blossoming young autistic person but the scars of what we have endured will never leave us. The examples I have included here are a very small part of our story which I continue to chronicle in ‘Letters from the Frontline of Autism’.........
http://www.gaiacharis.com/site/index.php/disability/81-letters-from-the-frontline-of-autism
Gaia Charis,Oct.2010.