As I write this entry, the events of my life together with how it has affected my mental health during July 2017 have been consistent with my experiences of living with Asperger’s Syndrome both pre and post-diagnosis, extreme ups and downs.
At the start of July, like many other people in the UK, including many also on the autistic spectrum, I experienced the disappointment of being turned down for Personal Independence Payment (PIP) at a Tribunal after my Disability Living Allowance (DLA) had ended in December last year. As obviously disappointed as I was with the decision, what was most upsetting for me though was the stress of the tribunal. After the agony of a six month wait, at the Tribunal I felt more like a defendant on trial in a court of law than a claimant who had been unfairly treated.
|Dave Johns as Daniel Blake|
Contrary to what certain sections of the media and some politicians will have you believe, Ken Loach’s film I, Daniel Blake, about the bitter struggle of a man (played by Dave Johns) who is denied employment and support allowance despite being declared by his doctor as being unfit for work, is not an exaggeration. As well as the obvious financial difficulties that removing benefits from some of society’s most vulnerable people, an even bigger danger comes with the unmeasurable emotional costs that it will no doubt bring, including depression and even suicide. Not only will this put more strain on services that society’s most vulnerable depend upon, but will also impact heavily on their families and carers.
|Angelo, played by Tyler Butterworth, prepares to make an 'explosive |
impact' with his power blaster!
Like others affected, I am not immune to the stress and trauma that the process has brought for many. After coming away from the Tribunal hearing traumatised, the first thing I did, and something that the age of YouTube has enabled, was take solace in one of my favourite shows as a child, Mike & Angelo! After often having had a day having to deal with school bullies, I would find solace in television. But whereas then, you were restricted to the tea-time hour set aside for children’s television, now one can select what was their favourite show to watch back then on YouTube providing someone has uploaded it. For those unfamiliar, Mike & Angelo was a hilarious comedy about a young American boy called Mike who came to live in the UK with his mother Rita, but their world was turned upside down when they from they had a lodger from another dimension, Angelo! Able to walk on the ceiling and do all kinds of hilarious stunts, Angelo quickly became one of my ‘imaginary friends’. His hilarious mishaps, especially when all his inventions kept going wrong, gave me an anecdote to what I had often been suffering from being bullied at school. To my delight, I found my favourite ever episode had been uploaded when Angelo entered a TV talent content and his home-made electric guitar blew up the studio, making a rather ‘explosive’ impact!
In my more recent past, what has often helped me come out of downward spirals, is giving talks and training on Asperger’s Syndrome. As well as obvious life experience of Asperger’s Syndrome pre and post diagnosis, the experience that I have gained from giving talks and training on living with the condition throughout the fifteen years I have been doing it I feel has also enabled me to grow and develop as a person, to the extent that I can give a bit a little of myself to who I am speaking to, which has greatly enhanced the personal joy I gain from it. And not long after such an awful experience, I had the opportunity to do what I felt was the talk of a lifetime.
| Rickleton Primary School, Washington, Tyne and Wear, |
where I attended between 1982-1988
Though I have had the privilege to speak with the likes of Tony Attwood, Temple Grandin and a few others, what justified this as the opportunity to give the talk of a lifetime was that it was at one of my former primary schools, Rickleton Primary School in Washington, where I attended from 1982-1988 until year five before being moved to Sunderland. Rickleton Primary School opened in 1980 as a new build in what was then a new town, Washington in Tyne and Wear, so I was one of the school’s first pupils. It was the first time I had been back to the school since I had been a pupil there in what was an era largely unrecognisable from now, when mobile phones were a brick-sized status symbol and modern conveniences of smartphones, iPads, whiteboards (we had chalk and blackboards back then) and instant electronic communication that was only largely seen in the sci-fi films and cartoons of the time. Returning to Rickleton after so many years away, it felt like physically that the school had shrunk when the tables and chairs seemed to be so small, and even the classrooms themselves seemed smaller. Remembering what I did of the school as a pupil, being not too different in physical size and shape to the other children and then seeing it as it is now, not only did the pupils and teachers seem younger than they were during my time as a pupil at the school, but the parents coming to collect them also seemed younger than back then! Revisiting my memories stored in my collective un-conscious of being of a pupil at the school and then bringing myself back to the present, it almost felt like being beamed forward into the next century!
Despite the social challenges and difficulties I faced, academic and social, as a pupil with undiagnosed Asperger’s Syndrome at the school, I do also have some very positive memories of my time there. I recalled some of these during my talk, including playing the part of a Weatherman called ‘Michael Trout’, (a parody of former BBC Weatherman Michael Fish) forecasting a dull day explaining the old BBC Weather symbols we had learned about in class, the magnetic ones Michael Fish himself used to use that kept falling off! Back when I was a pupil at Rickleton, Autism was barely known of, not just Asperger’s Syndrome, but it was through observations that my former teachers made of me as a pupil that would lead to my diagnosis when I was 20-years-old. Some of these observations made back then are still partly true of me now, especially my pastime of reading and retaining volumes of information which I have a tendency to go on and on about and also that one of few situations where I was able to work effectively with others was in drama, as the other roles I was acting masked a lot of my difficulties. But what myself and my parents are grateful to the school for to this day was the way that they persisted with, even when I was being very difficult as we were with the other schools I attended. As such, I emphasised the importance of early diagnosis, as it can potentially help to reduce a lot of misunderstandings, especially as many of my former teachers often felt more frustrated with themselves, rather than with me, not knowing what to do to get through to me. After stepping back into my past, when arriving home I almost expected to see Stu Francis presenting Crackerjack on television, which I used to rush home from school to see! Especially then as we had to make use of the tea time slot children were largely confined to for entertainment!
Just like they had in my past, watching Mike & Angelo and giving a talk about Asperger’s Syndrome has helped me out of a downward spiral. I had been thinking about postponing it, after not immediately feeling up to such a thing after the Tribunal experience. Regarding my situation, I will admit that I am fortunate in that I have the security of a very supportive family, but there are undoubtedly many who will be so much worse off due to the controversial government policy of the move from DLA to PIP. Sadly, many affected by the stress that has come with having to go through Tribunal over rejected PIP claims are giving up their fight. This disgraceful change to policy has largely come about due to misconceptions about the level benefit fraud portrayed by sections of the media, whom I will not name specifically, only interested in what makes good copy that is likely to ‘rile’ people who put it at over 20 per cent while government statistics show that it is less than one per cent!
What I have experienced over the past two weeks as I write this entry is very like periods where I have gone through a pattern of ups and downs, where the downs have become ups after giving Asperger talks. Speaking to students and their parents/carers at the Education and Services for People with Autism’s (ESPA) Annual Graduation Ceremony, I mentioned that what we learn from coping with such negative experiences can often making stronger. To enable this, most importantly it helps us to face up to difficulties and challenges we face once we feel ready to do so. Once we are able to do this, rather than making life difficult, challenges can make the lives of people with Asperger's Syndrome both interesting and hopefully fulfilling.
Huge thanks to Colin Lofthouse, Head Teacher at Rickleton Primary School for inviting me back to Rickleton to speak. Special thanks also to my former Year 1 and 2 teacher Miss Anne Hutchinson, who helped me so much as a pupil as well as my brother and sister and parents, and who is retiring after 37 years of service to the school from when it opened back in 1980. I wish her well for her retirement.
Thanks also to Paul Cook, Principal at ESPA College for inviting me to speak at the ESPA Graduation. Paul is leaving ESPA. He will be a huge miss to ESPA, but we wish him well in his next adventure.