Springingtiger's Blog

Mature Autism – The Speech I would have made.

After writing my last blog I had a dream. I dreamed that my old school had invited me to give out the prizes and make the key-note speech at the annual Speech Day. It would never happen as I am neither rich, famous nor a leader in any field of human endeavour. It would never happen, but if it did this is – I think now – the speech I would have given.

“Headmaster, governors, OGs (Old Giggleswickians), parents and members of the school, in which I include all who are actively involved in the life of this school whether pupils, teachers or any of the many essential support staff who enable the place to function. You probably have no idea who I am because I am not famous nor a leader in any field, but that I am not rich or famous is an important part of my story, so make sure you are sitting comfortably and I’ll begin.

The first thing I should tell you is that I was –at the age of fifty-seven – diagnosed with Asperger’s Syndrome or to put it another way I have an Autism Spectrum Condition. To put that in a numerical context ,possibly one in one hundred children will be born with an ASC whereas one in ten people will have a psychiatric illness at some point in their lives. Statistically some of you here will be affected by autism, you may be a parent of a child with autism, you may teach someone with autism, perhaps you have autism yourself. Don’t think you would necessarily know, I didn’t. Of course when I was a child very little was known about autism. Before I alarm anyone further I should say that “autism” is a not entirely useful label as it covers a wide spectrum of conditions including dyslexia and ADHD, but also more extreme non-communicative states and a whole range in between. Temple Grandin described being autistic as being like an anthropologist on Mars, we are the one’s trying to negotiate our way through society without the in-built map that normal people have– we generally use “neuro-typical” rather than “normal” because we are normal too but our normal is different. It is almost inevitable that you know someone on the Spectrum, you may even be related to them.

It is possible that had we known more about autism in the Fifties and Sixties I might now have been famous enough for you to have heard of me, perhaps not. The sooner someone gets a diagnosis the sooner they can begin to receive the support they need to function optimally in society. I must say now that I was very lucky I was sent to Giggleswick. People with autism generally need – and I do mean need – structure, routine and discipline, all of which were provided to me by Gigg’. So my first two pieces of advice be aware of autism symptoms and get an early diagnosis, secondly if your child is reasonably high functioning send them to Gigg’ – or a similar establishment. Coming here enabled me to get the structured education I needed while not being excluded from the company of normal or neuro-typical people. Yes my social skills may have been impaired, but the school provided a structure that enabled a degree of interaction I would not voluntarily have sought. Another advantage of a school like Giggleswick in my day, was it’s abhorrence of bullying, yes bullying happened, but it was actively discouraged and when discovered punitive action was taken. Giggleswick provided a comparatively secure environment without the excess of stimuli to be found in the city.

I chose to compare figures of mental illness and incidence of autism for a reason. People too often think autism is a mental illness, it is not. It is a spectrum of neurological conditions, not a disease, not an illness, you cannot catch autism. The only similarity autism and mental illness share is a totally unjustified stigma arising out of people’s ignorance. We are not to blame for the neurology with which we are born. People are not to blame if they contract an illness and a psychiatric illness is just an illness, not a cause for guilt or shame. A person with autism may sometimes have a psychiatric illness just like any “normal” person. People with Autism Spectrum Conditions are individual and different, it is impossible to generalise about the behaviour of people with ASCs from the behaviour of a sample. Parents do get upset and some, guilty when their child is diagnosed with autism. There is no justification for guilt and there is certainly no cause for despair. We are not defective but we are “differently effective”, by understanding autism and the interventions available for the child with autism parents and educators can enable a child to harness and develop his or her abilities. No matter how severely autistic a child may appear at the start, I believe that in time with support they will improve. Do not impose your expectations and values on your child, instead support them to be themselves. Do not assume they think and feel as you do or you may well feel an upset for them which they do not share, support them in living their own joy however idiosyncratic and strange it may appear to you. Remember no two people’s happiness is the same. My advice to parents, educators and people with autism is the same, learn who you are, make the most of your abilities, discover your own path, realise your own joy and help each other to the best of your abilities to do likewise. There is no cause for guilt, shame or regret, treat this as an opportunity to discover new and exciting things. We are each of us as we are and we each develop and grow in our own way, it is neither right nor wrong so just embrace each other for whom we are.

Things began to go awry for me when I left school and went to University, primarily because suddenly all the structure and discipline was removed from my life. I must admit to making bad choices and not being able to project consequence from action – hindsight is a harsh teacher! Today there is support to enable people with autism to successfully undergo Higher Education, so I repeat to you, early diagnosis is essential to ensure that people get the support they need. However in the absence of dedicated support make it a rule to discuss projected action with those resources that any University provides whether Student Counsellor, Tutor, Advisor of Studies or possibly a Chaplain. There are always people you can talk to. I wish I had put this rule in place before I went up to university, I didn’t and it cost me. More advice, don’t make decisions without discussing the possible consequences with a responsible adult.

It has not always been easy to maintain employment, to some extent because of the Asperger failing of not being able to connect action with consequence and to some extent an inability to understand the rules governing society. Today support is available for people with Autism Spectrum Conditions to help them find useful employment and retain it, so diagnosis is important. While the employment rate among people with autism is comparatively low employers who make proper provision for people with ASCs are generally pleased with their commitment and ability to focus. In today’s society many employers still think that if they’ve provided a ramp for wheelchairs and a disabled toilet they’ve made adequate provision for all disabled people. Every employee is different and an enlightened employer provides an environment that enables all their employees – whether disabled or not – to flourish, that means drawing out individual strengths and talents and making adequate provision to enable each employee to give of their best and feel it is worth their while to do so. Unfortunately most employers do not take into account the needs of their employees, I have sensory processing issues which make the noise and excessive heat in my workplace difficult to handle – does an office really need to be heated to over 80 degrees C? – the lighting is appalling and there is no quiet place available for taking breaks. My employer is better than most, at least they will consider requests for adaptations. At least with a diagnosis and understanding the person with autism can take action to minimise environmental problems at work and can make requests for necessary adaptations.

I may not be in a particularly good job, I may not have earned the qualifications of which my IQ might suggest I am capable, but in many ways I have a very good life. I have been married for thirty years and I have grand-children. I have leisure pursuits that fulfil me. I have no complaints. It is true that my life could have been very different had my autism been diagnosed half a century ago, but I’m not sure I would really want it to be very different, although more money would be useful – I think most people would share that opinion.

You have opportunities I never had and you should seize them! We live in a diverse society, if you need support to participate fully get that support. Parents of children with autism seek out and secure all the support you can. And to those of you who are not directly touched by autism I say, “Understand, we bring gifts for you too. Use those gifts, if you allow us to participate it is your business that will benefit from our peculiar abilities. Understand, let us past your barriers and we bring personal qualities that can support you and make your life more interesting and amusing. OK I admit sometimes we will drive you to distraction but bear with us, we have a lot to offer!”

So now you know why you don’t know me. You may never see me again, but people like me are all around you. We may sometimes behave as if we come from another planet, but don’t be afraid of us, we come in Peace. Thank you for your time, Live Long and Prosper.


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