A Personal Perspective
by Guy Shahar
14th January 2017
I usually try to keep these posts focused on general issues faced by parents of autistic children, and to avoid getting too personal, but at this anniversary time, I thought I would make an exception and give a very personal perspective on the past year. Within it can be found the genesis of The Transforming Autism Project.
In fact, it is only from a very personal perspective that this is anything like an anniversary at all. For me, the story of the Transforming Autism Project began long before it was conceived of as any sort of project – before it even so much as had a name – back on 14th January 2016.
I was at work, sitting in one of those generally purposeless and depressing meetings that I had grown used to, with a colleague who felt the same. We ended up talking instead about my son and about our journey of discarding the medics’ prognosis of a life of severe disability, and finding a different course that would give him the possibility of leading a fulfilling life.
She told me that I should write a book about it. I very quickly put that idea to bed. I explained to her that I couldn’t write a book because I didn’t have enough of a clear memory of each step in the process to produce anything coherent. Anyway, we were still in the middle of our journey – he was only 6 and we had many years to go – I might think of writing an article or something perhaps 10 years down the line when the final outcome was clearer. And anyway, on a practical level, I didn’t have the time even to read a book, let alone write one. It was a totally impractical suggestion.
I had thoroughly dealt with that idea – at least for a few hours: later that evening, sitting at the computer, I was surprised to find myself involuntarily tapping out an introduction to the book, not really understanding what I was doing or why. It took on a life of its own after that – the words just kept coming. Before work in the mornings and after work in the evenings, when I’d previously not had the time or energy to do anything, more and more of the book started to come out, until within about 6 weeks, I had nearly 50,000 words.
The process of writing seemed to completely bypass my conscious mind. I did little planning for each chapter beyond briefly revisiting our notes and various reports from the period I was writing about and quickly trying to organise the information into something vaguely coherent. The details and memories that appeared to have been lost magically filled themselves in once I started writing, and it was often the case that I’d write something, and the fact of having written it then evoked the memory of what I had written about (which I hadn’t been conscious of when tapping the keys…)
There was a serious change in my health during that time, too, perhaps as a result of this unusual process. A few days after starting to write, I felt suddenly as if I had been poisoned in some way. My heart started thudding fast all the time, and I felt as if I had a serious case of flu, though without any sinus issues or anything I would normally expect. It lasted a couple of days, and I then returned to work, but never fully recovered, and about 10 days later, immediately after writing Chapter 4 (which is summarised in the article, What is Autism, Really? and developed further in my later TED talk), I became totally wiped out, barely able for several weeks even to walk freely around the house and needing to take more than 3 months off work. I rarely left the house and felt to lie down all day, not even capable of focusing on reading or replying to an email. Yet, still, the book kept writing itself – as if it was coming from a completely different place. I was often knocking out a couple of thousand words in a day.
Within 6 weeks, the book was virtually complete. My health seemed to be past its worst by then, though not consistently. I was as surprised as I had been to be writing the book to find myself then starting a blog of articles about autism, which are now incorporated into the Transforming Autism website, but I still didn’t have much idea about what direction this might all be going in.
My health didn’t reach anything like a full recovery until late-Summer (aided, I think, by huge doses of nascent iodine and a drastically changed diet, of which more later), and by that time my employment contract was coming to an end. They were probably delighted to see the back of me, given the amount of sickness I had taken (which, by co-incidence, had started just days after my probation period had ended and I had become eligible for sick pay) and how I was still needing to take things easy. And I myself was also feeling more strongly than ever that staying in this job was the wrong direction for me. So my contract was ended in September, and I decided to take it as a positive opportunity.
But it still wasn’t clear what exactly it was a positive opportunity for. Something to do with autism, yes. Something to develop on the fact that the book was complete, yes. But what? I had the idea for a short time of working privately to support parents to implement the sort of programme we had used at home to transform our son’s life, and I did this sort of work on a very small scale for a while. But although the results were usually excellent, it didn’t feel that it was a sustainable way of making a living; and beyond that, there was something about that sort of setup that just didn’t feel right. I wasn’t sure what it was, but it felt somehow that it brought many limitations that wouldn’t otherwise be there. However, even though this was a clear feeling, I had no idea what limitations these might be.
It became clear a week after leaving work. I had taken to visiting business networking groups to connect with more people and explore possible ways to move forward. One meeting was particularly fruitful. It was at a group called Fabulous Women (they add “and Marvellous Men” in small letters at the end). When talking about my situation, one of the people there suggested that I set up Transforming Autism as a charity. The idea had previously occurred to me in passing, but during this meeting, the option began to make much more sense, as the potential of what could be achieved in terms of redefining how autism is perceived and providing the means for real meaningful life-transformations on a much larger scale started to become clearer to me.
Critically, at the same meeting, by co-incidence, I ended up sitting next to Gilles Pelenc. I knew nothing about him at the time, but as he also had 2 autistic children and we had both had the good fortune to intervene at an early stage of their development with significant results, we arranged to meet and discuss further.
It turned out that our thinking about autism, and about many other things, was astonishingly similar, and this has been of huge importance in our success to date. He joined me in taking the Transforming Autism vision further, and in setting it up as a charity. He brought many ideas with him, and the concept of the Hub, the visual materials, and the eventual focus we will give to autistic children’s transition to adutlhood were all projects that he had been developing his thinking about before we met. Our similar thinking has led to a very smooth formulation of the aims, objectives and values of the Charity.
And in the final quarter of the year, our vision has continued to evolve and the foundations have started to be laid for achieving them.
Within just 3 months of leaving my job and starting to work seriously with Gilles on the Project, we have achieved the following (in addition to the book, which was already avaiable). At times it has felt as if things have been moving frustratingly slowly, but when we put it all in a list, it feels more remarkable:
– A clear definition of what we are about as a charity (our aims, goals, vision, values)
– A new more professional website (as opposed to the original blog) with more clarity about us and good substantial editorial content.
– A logo that clearly reflects our objectives.
– A TED talk that lays the conceptual framework for what we are about
– Advanced stages of registration for charity status and towards getting a charity number
– An agreement with the Mifne Centre in Israel to bring its pioneering and transformative Reciprocal Play Therapy to the UK with a Transforming Autism Mifne Centre here.
– The beginnings of recruiting a really good team of highly skilled volunteers who are committed to our purpose and dedicated to working with us to move the project forward.
– We have begun looking to recruit a board of substantial trustees who will be able to propel and steer us as we grow.
Before the end of the month, we will be bringing together some of these key volunteers to begin to seriously plan for an official launch and an awareness campaign on the power of early detection and intervention in autism. It will also explain more about the Mifne clinic that we plan to set up here, and to begin to engage potential staff to work there.
For me, the year has been dizzying and, although at many times bewildering and even frustrating, deeply satisfying. To see such a project really starting to take shape, and to glimpse the very real changes that we have the opportunity to bring about, is a wonderful feeling. It has been a year of incredible and sometimes astonishing developments, surprises and changes of direction.
And for anyone interested in such things (it seems there are many), alongside all of this there has been a fascinating journey for me around food, which I see as part of my recovery and of the same personal process that brought the book and then the charity about!
I have had issues around food all my adult life, with the list of foods that I can comfortably eat becoming smaller and smaller. Aged 27, after an elimination diet, I cut out gluten, and over the following years slowly phased out dairy, and finally (and importantly), sugar. This improved things a lot, but didn’t totally get rid of the constant heaviness and bloating I felt, which sapped my energy, made me irritable and weighed me down in many other ways.
Towards the end of 2015, I decided to try to incorporate more raw food into my diet. I had heard about this way of eating before, and had even tried it for a while, but the much-hailed raw puréed soups and so on just seemed to make things worse. So this time, I had the more modest goal of eating simple raw food for one of my daily meals – either sprouted beans/lentils for breakfast, or a big salad for dinner. That would be enough. But as soon as I tentatively started to do this, I craved more and more of this sort of food and less and less of the cooked food – even plain old steamed vegetables slowly phased themselves out over the ensuing months. And my body seemed to need less food as well, so the amount of food I ate decreased too without my ever feeling hungry. Within little more than a year, I had gone from a restricted but full and fairly healthy diet, to a much lighter one, where I am now eating pretty much only raw fruits and vegetables, vegetable juice, spirulina (which, unusually, I love) and sprouted legumes – along with healthy oils – and only during a 3-4 hour window in the afternoons, with just water outside that window. And I feel much better for it, much lighter and could probably comfortably reduce it even further if it weren’t for my long-standing habit of eating for comfort….
My attitude to the range of foods I am able to eat has also changed – no longer seeing myself as restricted to an ever reducing list of foods with all the inconveniences that brings, but rather identifying what I CAN eat, and emphasising how easy that is to cater for. As long as I avoid too much comfort eating, my stomach issues are vastly improved and since the summer, the more I have eaten like this, the more my overall levels of energy have also improved.
But – and this is where my personal health issues become relevant to The Transforming Autism Project – as one health issue recedes, it tends to be accompanied by an intensification (or at least stubborn persistence) of problems elsewhere. My long-standing migraine has continued to worsen, leading to stronger more intense headaches and to more of the sort of heaviness, lethargy, lack of focus and irritability that the reaction to food used to be responsible for. This has always been worsened by the sort of sensory stimulation that is fine for most people, like bright lights and air-conditioning, but which has always made office work almost impossible for me and compromised my standing amongst my colleagues, many of whom could never understand how my productivity could be affected by such innocuous factors and often assumed I was “trying it on” to avoid focusing on my work. It is also triggered whenever my hair gets wet or cold – which means that even washing my hair results more often than not in days of severe migraine symptoms. Perhaps most inconvenient of all is that I remain deeply over-sensitive to any sort of interpersonal hostility or unpleasant or even slightly unclear or ambiguous interaction – however subtle and unremarkable – which can leave me debilitated and out-of-action for hours or days, and which the other person involved can have no idea about whatsoever, and would be stunned if they did. The difficulty does not occur, as many would expect, on the mental or emotional levels – of beliefs, expectations and judgements (even unconscious ones) – but on a deeper more systemic level over which I have far less leverage.
All of this is hidden from the sight of pretty much everyone I interact with. It means that I am in some way below par probably well over 80% of the time (perhaps less during the summer).
Whether this is down to the remnants of any autism or autistic traits that I have or had myself (I was never diagnosed), I don’t know, and isn’t really that important. When I was 27, as well as dropping the gluten, I also began HEARTFULNESS (Sahaj Marg) meditation, which I’m sure was responsible for massively increasing my capacity to live and function in this world, and without which, I know I wouldn’t have made it to 2017, and certainly wouldn’t be in a position to hold down a full-time job, have a family or to launch anything like The Transforming Autism Project. So, things are much improved since that time, and such things have gone from being totally inconceivable to actually happening.
Even so, to lead a new charity through its formation and growth while dealing with all of this behind the scenes is, to say the least, a major challenge – especially when exposure to the triggers is much more plentiful when engaged in this relatively more public role. But at the same time, it serves the valuable purpose of keeping me perpetually on focus through constant appreciation – even to a tiny extent – of the sorts of difficulties that autistic people have to deal with every moment in every situation, whilst being judged against the same criteria as everyone else in the things they find difficult (and often meaningless) and ignored for the immensely valuable contribution they have the potential to bring in other areas. This focus will ensure that our original intentions are safeguarded and continually reinforced in all our activities and in every area of our expansion. It will also ensure that when we start to take people on as employees, we strive to become a truly autism-friendly employer.
And this is critical as we proceed into 2017 – a year of anticipated major growth for us – and actively work towards the establishment of a Transforming Autism Mifne clinic in the South East of England, as well as seriously embarking upon our other areas of focus around Early Intervention Awareness, a comprehensive One-Stop Hub to provide direct support, resources and referrals for all issues that parents of autistic children could face, and starting to develop our own visual materials and other aids to support children. We are likely to start to become an employer during 2017, too, and this will force us to give some serious thought to the next phase of our roll-out, which will be about how to support autistic children as they approach adulthood, with meaningful guidance and facilitation in all forms of relationships, including with employers, to ensure the most comfortable and sustainable integration possible into the wider world.
Although this article is entitled One Year of Transforming Autism, in reality, this is the inception. Everything up to now has been a remarkable preparation for what we are about to begin. May 2017 be even more remarkable, bringing very significant growth towards meeting our goals, and the serious establishment of The Transforming Autism Project as a substantial force in the empowerment of people with autism to be recognised for and to live to their true and full potential!