The Potential Trust Potential Stories.

Potential Stories about individuals with High Learning Potential and Dual and Multiple Exceptionality (High Learning Potential and Special Educational Needs and/or Disabilities)

Why telling real stories is so important.

Children, young people and adults with High Learning Potential and Dual and Multiple Exceptionalities (DME) should have their gifts and talents as well as the challenges they face recognised and supported in an inclusive society. However, they are often not easy to identify and their needs even harder to determine both inside and outside the classroom. Amongst other things, their abilities can be hidden or even masked by their special educational needs and/or disabilities. They can ‘disappear’ in the system; they can be misdiagnosed or labelled as lazy, as badly behaved or as troublemakers or they can develop a range of social, emotional, mental health and other problems which provide the focus for intervention without looking at their holistic needs as a child or young person with HLP and DME.

Every child is an individual and their abilities and needs even more so. To best illustrate the characteristics and potential of those with HLP and DME, The Potential Trust is seeking stories about these children and young people including their journeys, how their needs are met and what happens to them at home and in their learning.

If you have a personal story about DME which you would like to share with others, please email this to potentialtrust@gmail.com Please change the names and details to preserve anonymity. The Potential Trust reserves the right to edit the story or not to publish it on our website. Sending us your story implies consent for us to send it out on social and other media to raise awareness and support others in this important area of work.

Simon’s story.

As a child I was quite anxious. This was not always apparent from the outside because I internalised it.  I could also become angry because what was obvious to me was not necessarily obvious to others, although I didn’t understand that at the time.  My showing of anger was not acceptable to my parents, which added to the anxiety that I experienced.  The internalisation of my anxiety and the frustration of me being unable to express my anger, resulted in me suffering from  physical ailments such as constipation, acute stomach cramps (which was diagnosed at the age of 8 as colic) and severe irritation of the scalp amongst other things.

This anxiety and the problems associated with my anger made me feel that there was something wrong with me.  This sense of there being something wrong with me was compounded by the attitude of my parents and people in authority who considered me to be bright but lazy and prone to playing the fool too often.  I had learnt early on that humour was a good way to get a positive reaction from people.

I was a tall child, reaching 5ft 8” when I was 12 years old.  This size and the obvious discomfort I felt about myself predisposed me to being bullied, sometimes by pupils and sometimes by staff.

In one episode early on in my time at senior school, I returned home with a black eye. When my parents enquired what had happened, I broke down and told them that it had been going on for weeks and included senior boys putting a scarf around my neck and pulling it to see what colours I would go.  The school and my father were pleased that they had suspended one boy and expelled another to solve the problem.  I returned to school to find that rather than having a few boys on the bus targeting me, I had most of the 5th form.  I was actually described in one school report by a teacher to be an oaf. 

My anxiety levels were such that any cognitive ability I had, I found difficult to access. This resulted in me leaving senior school with 6 “O” Levels and Technical College with “O” grades in my “A” Levels, even after taking an additional year to complete them. My teachers thought I was either lazy or not bright enough and my parents thought the same.

I decided I needed to leave home and enter the world of work. I started as a management trainee spending time at 3 different businesses and learning the ropes within a large multi-national group. One of the companies I was with wanted me to work in their business in Holland and the Holding Group wanted me to go to Australia.  I felt uncomfortable within the business and didn’t feel I would cope if I went abroad so I decided  to change tack.

I applied for insurance broker positions at Lloyds Insurance brokers.  Most wanted applicants with “A” Levels but I managed to obtain a position as an Aviation Reinsurance broker.  My bosses were pleased with my progress but I was uncomfortable there and within 6 months I had my first breakdown at work.  I was in floods of tears and was signed off work.  I was so ashamed of myself and I swore that I would not let this happen again. My father was also ashamed of me.  

Having returned to work, I knew of another company which was looking for a young broker it could train up for the future. I accepted the position of Marine Reinsurance Broker. Everything started well and I was commended for my work by the chairman to my colleagues.  Nine months later, I had another breakdown and was written off work.  I was struggling within this environment but I went back to work  to try again. Within a year it was all too much and I decided I would commit suicide. I didn’t want to die but I was just not coping with life.

I sat down with some pills to end it all.  In sitting there, I realised that the will to live was stronger than the will to die, therefore I had to find another way.  As a child and teenager I had always enjoyed being on my Uncle’s farm and from the ages of 13, 14 and 15 I worked for the whole of harvest period, shovelling grain, stacking bales, painting gates.  I didn’t have anxiety during those periods and it was the anxiety I wanted to get away from.  

I decided to go into farming and enrolled on the National Certificate in Agriculture course at a county agricultural college.  I couldn’t enrol on a more advanced course because I didn’t have “A” Levels and I couldn’t face doing my “A” Levels again.  The lecturers on the course told me that I shouldn’t be on that course because I was too intelligent.  My anxiety was still with me.  In one early exam my brain was not working, I could not think of simple answers to questions. The frustration I felt was immense.  My anxiety would tense my body and create pains where there was no reason to have pain.  Things were not working out as I had hoped.  I had appointments at the Royal National Orthopaedic Hospital in London about the pain I was experiencing in my lower back. They could not find a reason why I was experiencing pain. The last consultant I saw, suggested I went to see a “Faith Healer”. I wanted to punch him on the nose.

Having left college with a distinction I started a harvest job on a large Estate with other college students, with a view for one or two to stay on full time.  I was asked to stay on.  My anxiety was not going away. All along I was being medicated for my depression which my family were embarrassed about and I was not getting any better.  I couldn’t stay there as I was too uncomfortable.  I found another job on another farm and managed to make an appointment to see a psychiatrist.   

This job was no better.  There was a clear pattern emerging, my anxiety was following me around.  I was feeling uncomfortable in settings other people were not.  The psychiatrist told me that there was nothing wrong with me yet I was suffering from anxiety and depression.  This was not making any sense.  In simple terms there had to be something wrong with me or something wrong with the rest of the world.  I couldn’t believe that the rest of the world was at fault and so therefore it had to be me.

I had to earn a living whilst I tried to solve this problem so I moved jobs and areas.  I was continually struggling with my mental health. One day a new employee joined a company I was working for. She was the personal assistant to the Chairman and I was assistant to the Chairman so we were working closely together.  Fairly soon we had gone on a date. Within a week I knew I wanted to marry her and within one month she had agreed. Why? Because she didn’t make me feel uncomfortable. She didn’t try to change me. She accepted me for who I was as did her parents.  37 years later we are still together, happily married and still have the support and understanding of her parents.

Following me meeting my future wife, I had periods out of work, periods doing menial jobs, periods doing more challenging jobs most of which ended with me breaking down and having to leave or at least having time off work. I got married along the way.

With the support from my wife and her parents I managed to keep going for longer periods and eventually set up my own business. Customers would buy from me because of my knowledge and understanding of their needs and they trusted me.  It was my suppliers I had problems with.

Eventually it all became too much for me and in 2006 I couldn’t take it any more. I had not been able to find the answer to my problems and I found the world too difficult to be in.  I had a fantastic wife and two wonderful sons but I was absolutely distraught.  I couldn’t leave the house.  We lived on our savings for 2 years without any other income.  Most doctors just gave me pills, most psychiatrists just made me feel worse. Most therapists were nice but didn’t understand what I was talking about until I met one who saw something different in me.

She arranged for me to be seen by Ivan Tyrrell and Joe Griffith of the Human Givens Institute in a session in front of 200 students.  I was wired up with a microphone and filmed during the consultation in which I was asked questions.  This consultation resulted in a diagnosis of “Very high functioning Asperger’s Syndrome coupled with an extreme intelligence” and that I should read the book “Unstoppable Brilliance – Irish Geniuses and Asperger’s Syndrome”.

This diagnosis of Aspergers Syndrome astounded me because most people had told me I was good with people, that I read their emotions and that I acted appropriately.   I was embarrassed by the “Extreme Intelligence” part as well.  I thought I was reasonably bright but felt inferring that I was a genius was stretching things a bit.  More research was needed.  

I came across the book “The Essential Difference” by the world renowned specialist on Autism, Professor Simon Baron-Cohen.  This book discusses how different brain types interact with the world around them.  It includes quotients for Autism, Empathy (how well you understand and relate to people) Systemising (how well you understand and relate to things).  By completing these quotients you can get a measure of how you are in relation to others in the general population.  

	Autism	Empathising	Systemising
	Quotient	Quotient	Quotient
Most Women	15	47	24
Most Men	17	42	30
Most people with  Asperger’s Syndrome	35	20	45
Simon	20	54	60

Professor Baron-Cohen was good enough to meet and assess me. He concluded that I did not have Asperger’s Syndrome and that I was neurologically atypical with an unusually broad range of capability.

Armed with this I set about testing other people and getting feedback from them on their scores.  I also set about building my confidence to go out into the world of work again.  I did this first through volunteering at the Citizen Advice Bureau, Oxfam and my local Hospice. In all places I was very well accepted by people apart from the odd exception.  I started explaining about brain type and where I was in the scheme of things. Some people were fascinated and said that I had made sense of a relative for them. Some people were lukewarm and some people were down right hostile.

I eventually got back into the world of paid employment but what I found was that although people listened to me, my employers and suppliers were only interested in using my capability for their benefit and not respecting or rewarding me appropriately.  For me a good deal that is sustainable has to be good for both sides.  The people I was dealing with could not see that.  When you have had such a checkered career history as mine, it is very difficult to find gainful employment where I can use the experience and capability that I have.  That is why my wife and I set up our own business so that we can have more control over who we deal with.

For the sake of my mental health I have found it better to separate myself from the world and only engage with it on my terms.  This has helped me make a better judgement when considering the conundrum that has troubled me all my life:  “There is either something wrong with the world or there is something wrong with me”

I now know there is nothing wrong with me.

During my journey I have come across other people who have suffered similarly.  These people are bright, quite often brighter than those around them.  One description I have heard about capable people is:

“Talented people hit targets that other people cannot hit. Geniuses hit targets that other people cannot see.”

If a child is bright and can see things that the influential adults in their life cannot, that child is likely to be confused and the influential adults are likely to be confused by the child’s confusion.

This disconnect is likely to manifest itself in increased anxiety levels and possible anger in the child and frustration in the influential adults.  The longer this goes on the worse it will get for both parties, but the child will experience it worst of all because the balance of power is in the hands of the influential adults.  The child’s behaviour may become erratic and follow patterns that will concern the influential adults who will seek help from “experts”.

“Experts” will invariably assess the symptoms to produce a diagnosis or label based on the displayed symptoms, their experience of people with similar symptoms and the accepted available information about conditions and labels. If the experts cannot see what the child (or an adult for that matter) can see, they will not have any real understanding of why the child is presenting with a certain set of symptoms.  

Part of the diagnosis of high functioning Asperger’s Syndrome I was given by Joe Griffith was because I bit my finger nails.  Nail biting is a symptom of anxiety not of the underlying cause of the anxiety.  

A label often given to someone on the Autistic Spectrum is “Autistic Spectrum Disorder” or ASD.  This label was coined by someone who is not on the Autistic Spectrum and who cannot see the world from the point of view of the labelled person.  This label is highly offensive and very unhelpful to the person labelled so.  People on the Autistic Spectrum do not have a disorder, they have a difference in the same way hair or skin colour is a difference.  Would you find it acceptable to label someone with a darker skin as having a “Melanin Disorder”?

In my view the people who are best able to help the children who are showing anxiety and the inability to fit in with the “norm” are those who have experienced it themselves and understand why they were anxious.  

At 64, I am coming to terms with who I really am and the awful treatment I have received from most people that I have come into contact with.  The awful treatment I received was not because I was bad, difficult, awkward or there was something wrong with me, but because they couldn’t understand me.  The understanding I now have puts me in a very comfortable place. I am writing this with unbitten fingernails!  I would not want anyone to go through what I have been through. What I do want is for my experiences and knowledge to benefit others otherwise the trauma that I have experienced would be for nothing.  For that to happen influential adults have to listen to what I have to say.  Unfortunately of the people I have made contact with in the last 15 years, I am not aware of one influential adult who has listened to me and taken heed of what I have said.

This is a plea to all influential adults for the sake of every talented and bright but poorly understood child, please hear me. 

About Simon.

Simon was brought up by his mother and father and has two sisters. He was educated privately up to the age of 13 then went to a Grammar school until 16, and a county technical college for three years to take his “A” Levels.

Simon is married with two grown up sons. He and his wife now run their own business together. Simon’s strengths are extremely broad and varied, which in themselves are also his weaknesses because others can either feel threatened by him or do not understand what he is talking about.