I’d like to make a few comments and observations on autism and Asperger’s. After six months of discussion and investigation with my doctor, and a self-diagnosis that pointed to a likelihood of ASD on my part so clear as to be near certain, I asked the doctor for a referral. This was done without hesitation and I now await notification. I’m not sure about the terms. There is controversy over the name ‘Asperger’s’ for a number of reasons. I use the term Asperger’s Syndrome Disorder (ASD) for the reason that it is familiar and people have some understanding of it. At the same time, I see AS as a condition rather than a disorder. If there is a disorder here, it is one that exists in an AS person’s environment as in his or her character traits.
I do not write on AS as an expert by way of professional training and education. I do read the views of these experts and see much that requires qualification and greater nuance. I am expert by way of inside knowledge.
My observations here are based upon a recent study:
Mônica R. Favre, Deborah La Mendola, Julie Meystre, Dimitri Christodoulou, Melissa J. Cochrane, Henry Markram and Kamila Markram. Predictable enriched environment prevents development of hyper-emotionality in the VPA rat model of autism. Frontiers in Neuroscience, 2015 DOI: 10.3389/fnins.2015.00127
I nearly always run as far as I can from research which involves rats. I respond more positively to this study for the reason that its observations ring true from my experience as an odd, eccentric human being trying to negotiate the complexities of the human world. So I reserve the right to edit and adapt the study for my own ‘expert’ purposes.
I was recently asked, by one who seemed not quite convinced by my claims to have AS, about what I feel in dealing with the world around me. I immediately replied that I have no filters and see EVERYTHING AT ONCE. It’s like entering a building and switching the light on and immediately every light in every room comes on. That leaves you with the problem of having to find, in an instant, the room that you should be in. The person querying me is normally sceptical and contrarian and prone to carry on with a query. This time he immediately recognized that I ‘had hit the nail on the head.’ I know. I should know. I have been living like this my entire life, having to control a deluge of information that comes my way in ordinary life. In personal interaction it leaves you with a head of several things at once, exploding exponentially into many more things. In conversation you are forever facing the problem of having to identify and retain the most relevant piece of information, whilst resisting the temptation to jump in whilst someone else is speaking, at the same time trying hard not to hear and respond to the extra information said person is presenting to your already overloaded senses.
This recent study purports to show that it is social and sensory overstimulation that drives autistic behaviors. That’s an important claim given previous understanding of autism as a retardation. The study examines known risk factors to humans to support the unconventional view of the autistic brain as hyper-functional. This is important in that it challenges the view of the autistic brain as ‘backward’ and ‘retarded.’ The very opposite may well be true. Individuals with autism and Asperger’s are often highly sensitive to their environments. The research raises the possibility of a therapeutic emphasis on evenly-paced and non-surprising environments which are tailored to the person’s sensitivity so as to enable them to be well-functioning individuals.
Sensitivity to environment will mean very different things to different people on the spectrum. In general, though, we can say that people on the autistic spectrum have unusually delicate sensory systems which those not on the spectrum will struggle hard to understand. It’s ‘not normal.’ I know. That means that the senses of those on the spectrum can easily become overloaded, causing meltdown. That refers to problems with sight, hearing, touch, smell, and taste. That involves a life of constant challenge and difficulty. Even more problematic, people on the spectrum find it extremely hard, often impossible, to filter sensory information as it comes in. You cannot ‘just ignore’ it, as about a million well-meaning people have advised me over the years. It’s like being engulfed in endless waves. I would describe this indescribable condition this way. You can be listening to a song and enjoying it. Then another song starts to play over it, and you hear the notes and words being laid over the initial song. Then another song is overlaid, then another, and another, until there is nothing but this indiscriminate noise and you want to put your hands over your ears and shut it all out. When you cannot there is a crash, you simply cease to function.
In contrast with individuals with typical sensory systems, individuals on the spectrum may not be able to, for example, notice neighbours doing DIY, dogs barking, music being played, alarms going off, engines being run, and decide not to listen to it. The noise is an interference that cannot be switched off and shut out.
Sensory Challenges in Autism
There are any number of environmental challenges that can negatively impact people on the autism spectrum. These include:
Florescent lights which flicker and/or buzz;
Persistent sounds such as lawns being mown, banging, sawing, drills being used, car alarms, ticking clocks, dogs barking outside, dripping water, car alarms, traffic, neighbours banging doors (or just being alive and showing signs of movement in their house);
Smells from cleaning supplies, new carpets, newly washed clothes, perfumes, certain foods, and cologne and aftershave;
Fluttering curtains, posters, and other wall hangings;
Foods and materials with specific textures.
There is a contrast between sensory ‘regulation’ and sensory ‘dysregulation.’ Sensory "regulation" describes the feeling that one is experiencing just the right amount of sensory input. This regulation is important in securing physical and psychological comfort for the individual. Without it, life can be an ordeal, a hell even, when it leads to sensory dysregulation. Studies show that sensory dysregulation is one of the major reasons why people on the autism spectrum, even those at the high functioning end who show the ability to handle many forms of stress, find themselves unable to cope in situations which strike others as perfectly normal and ordinary and hence tend to meltdown. It has happened to me several times, leaving those who have witnessed the meltdown totally perplexed. They don’t see anything wrong in the environment and struggle to see that anyone, including themselves, has said anything wrong. They don’t understand.
What should be fairly easy to understand is that everyone has their sensory limits, and not just people with autism. A report published in JAMA Pediatrics in 2018 stated that one in six children has sensory processing difficulties, causing frequent meltdowns that can be easily mistaken for tantrums or bad behavior. I don’t react with anything like the extreme emotionalism as I used to. To those who do not understand, my reactions could have looked like tantrums. They were meltdowns. And frustration born of being at cross-purposes and being misunderstood. I can confirm 100% that even making a determined and conscious attempt to filter out stimuli I can often be overloaded and overwhelmed. In a social environment, you cannot control and regulate people and events as you would like. Life has a habit of pressing points and issues that you would prefer to leave to another day. The only way of avoiding this is to cut people out, hence the pronounced tendency to withdrawal.
Traditionally, autism has been viewed as a form of mental retardation, a brain disease that impairs the ability to learn, feel and empathize, leaving those so afflicted disconnected from the complex and ever-changing social and sensory environment of the normal everyday world of everyday folk.
Viewed from this perspective, therapeutic intervention in autism has been directed towards engaging the child in order to revive brain functions believed to be dormant. This traditional view of autism is misguided and is being challenged.
The study completed by researchers at the Swiss Federal Institute of Technology in Lausanne (EPFL) demonstrates that unpredictable environmental stimulation drives autistic symptoms at least as much as an impoverished environment does, and that these symptoms can be prevented by predictable stimulation. The study provides evidence to support a drastic shift in the clinical approach taken to autism, away from the idea that the autistic brain is damaged brain and requires extensive stimulation. The new understanding holds that autistic brains may be hyper-functional and therefore require enriched environments that are non-surprising, structured, safe, and tailored to a particular individual's sensitivity. That makes complete sense to me, having spent a lifetime building that enriched environment for myself, at a safe distance from the mad, unstructured, uncertain world around me. It is often said that AS folk live in a world of their own. That’s a typical view of those who are trying to make sense of a condition they know little about and understand even less. It’s a view I have heard many times and it has only ceased to be incredibly annoying through now coming to know that I have AS, and understand what that condition entails. With self-knowledge comes greater self-confidence. People who say annoying things don’t actually know a great deal.
To cut to the chase, the research scientists show that persons raised in a home environment that is calm, safe, and highly predictable with little surprise, whilst still rich in sensory and social engagement, they do not develop symptoms of emotional over-reactivity such as fear and anxiety, nor social withdrawal or sensory abnormalities.
Well I never! That sounds precisely like the ‘happy habitus’ I have sought to define in my written work. A conclusion like this would not surprise those who argue for socialism. Or ‘rational freedom’ as I call it. I don’t like surprise and excitement in fast-paced, endless changing environments. I like the familiar.
"We were amazed to see that environments lacking predictability, even if enriched, favored the development of hyper-emotionality in rats exposed to the prenatal autism risk factor," says Henry Markram.
The study offers research which shows that in certain individuals, non-predictable environments lead to the development of a wider range of negative symptoms, such as social withdrawal and sensory abnormalities. Symptoms such as these serve to prevent individuals from fully benefiting from and contributing to their surroundings. That is the story of my entire life. I have always been at odds with my surroundings and the people in them. I may, therefore, be what the authors of this study identify as a target of therapeutic success.
I read that the results of this research study have been received with enthusiasm by members of the autism community. Knowing only too well the pain and frustration caused by high sensitivity to change and to sensory stimulation I also responded positively to reading these conclusions. They ring true.
The study identifies drastically opposite behavioral outcomes depending on levels of predictability in the enriched environment, and suggests that the autistic brain is unusually sensitive to predictability in rearing environment, but to different extent in different individuals. The study supplies strong evidence for the Intense World Theory of Autism, proposed in 2007 by Kamila Markram and Henry Markram, neuroscientists who are also co-authors of this study. I’ll just quote the scientific theory behind this: ‘This theory is based on recent research suggesting that the autistic brain, in both humans and animal models, reacts differently to stimuli. It proposes that an interaction -- between an individual's genetic background with biologically toxic events early in embryonic development -- triggers a cascade of abnormalities that create hyper-functional brain microcircuits, the functional units of the brain. Once activated, these hyper-functional circuits could become autonomous and affect further brain functional connectivity and development. These would lead to an experience of the world as intense, fragmented, and overwhelming; while differences in severity between persons with autism would stem from the system affected and the timing of the effect. The authors acknowledge the need to test these ideas in humans.’
It follows that if persons on the autism spectrum are indeed more neurobiologically sensitive to their social and physical surroundings than others as a result of early brain hyper-function, then their quality of life would be improved by a predictable environmental stimulation which is tailored to a person’s individual's specific hyper-sensitivity so as to prevent or ameliorate the debilitating autistic symptoms of sensory overload and anxiety or fears, and allow the child to flourish. Are those successfully adapted to the ‘normal’ world prepared to be so accommodating though? Do they see the need to make the necessary changes?
"A stable, structured environment rich in stimuli could help children with autism, by providing a safe haven from an overload of sensory and emotional stimuli. In contrast, an environment with many unpredictable, changing stimuli could make their symptoms worse, raising anxiety and fear and making these children retract into a bubble," says Kamila Markram.
"Importantly, such constructive interactions with a safe and predictable world at key developmental sensitive periods early on could enhance coping and succeeding in subsequent less structured or unfamiliar contexts, and give place to a harmonious individual development," says Monica Favre, first author of the study.
This breakthrough study holds out the possibility and hope that if brain hyper-function can be diagnosed then at least some of the debilitating effects of a supercharged brain can be prevented or ameliorated, if not by environmental enrichment as such, then by the creation of highly specialized environmental stimulation that is safe, consistent, controlled, announced and only changed very gradually at the pace determined by each individual according to his or her needs and sensitivities.
Journal Reference:
Mônica R. Favre, Deborah La Mendola, Julie Meystre, Dimitri Christodoulou, Melissa J. Cochrane, Henry Markram and Kamila Markram. Predictable enriched environment prevents development of hyper-emotionality in the VPA rat model of autism. Frontiers in Neuroscience, 2015 DOI: 10.3389/fnins.2015.00127