I write this blog to share a personal story of some of my experiences and knowledge gained after a later life diagnosis of Dyslexia and Asperger syndrome in Cambridge.
What does Neurodiversity mean?
A recent research paper published by ACAS on, ‘Neurodiversity at work’, by Bewley, H. and Anitha, G. (2016) state that ’Neurodiversity refers to the diversity of the human brain and neurocognitive functioning’. It expresses neurodiversity as the umbrella term to encompass neurotypical and neurodivergent. The neurotypical brain is associated with what is considered ’normal’ functioning, whilst the neurodivergent differs from this ‘norm’. The report suggests that, ‘The neurodiversity paradigm embraces all neurocognitive functioning equally and that, the individual minority types are natural human variations, which are authentic forms of human diversity and self-expression, rather than pathologies’.
Neurodivergent encompasses cognitive differences including; dyslexia, dyspraxia, and dyscalculia, ADD/ADHD, Autism Spectrum conditions including Asperger syndrome, OCD and Tourette’s syndrome. The British Dyslexia Association (BDA) highlights that, ‘there are more people with Dyslexia/neurodiversity than all the other disabilities put together’, yet little publicity is given to them.
The social model of disability, which is supported by the Equality Act 2010, states that, ‘It is the way in which society organises itself that creates disability’. The infrastructure required to support neurodiversity needs to start with education for all, so that policy, practice and procedure can be inclusive, in every facet of life. It is not the Neurodivergent individual who needs to be squashed through society’s one-size-fits-all hoop, rather it is society that needs to be educated to provide a choice, to allow everyone a hoop of their choice.
Cambridge is a magnet for neurodivergence, because of the, mathematical, high tec. and research industries in the region. This is further reinforced by Roelfsema et al (2011) who identified that there are significantly more children with Autism in IT rich regions and Wei et al (2003) who suggests that Autism Spectrum Disorder (ASD) students are more likely to choose STEM subjects. In addition, research by Julie Logan on dyslexic entrepreneur’s highlights that in the UK 20% of successful entrepreneurs have been identified as dyslexic and in the US the percentage is 13% higher. I would argue that the reason for this higher percentage is that the US are more open and forward thinking in the field of neurodiversity, resulting in this population flourishing.
The government has identified a goal to halve the disability employment gap by 2020. There is already legislation, indicated below, that should accommodate inclusion for this population. However, the lack of education in society does not allow this to follow through in practice.
- 2006 The Public Sector Duty
- 2009 The Autism Act – It is identified that just 16% of Autistic adults are in full-time paid work and overall just 32% of Autistic adults are in some kind of work. (NAS) A talent pipeline waiting to be tapped.
- 2010 Equality Act.
It is my passion to communicate to the employment world the extreme lack of healthcare, education and diagnosis of dyslexia and Asperger syndrome in the UK and more particular in Cambridge. It is difficult to deal with a problem until you accept that it exists. There is no diagnosis for adults with dyslexia and no support except in the private sector. For the last eighteen years, the NHS have contracted Cambridge Lifespan Asperger Syndrome Service (CLASS), to diagnose Aspergers in adults, but there is no help or support after diagnosis. As a result there are no doctors in Cambridge who have any knowledge of dyslexia and Asperger syndrome in adults. This creates two issues 1) that they cannot diagnose and do not know how or where to provide support and understanding to improve the quality of life and 2) they do not know the effects on an Asperger person so do not know how to change their behaviour and comply with Public Sector Duty. This is not the case in other Cities.
You may ask me how, I came to connect with dyslexia /Asperger syndrome as a mature adult. Well, I have spent a lifetime trying to find out what my differences were, with unaware doctors in the NHS and the education system. This is the story of many adults in the UK. It is so sad because we have lost a life of achievement. By the age of 7 a child knows that they are different from their peers, but they do not understand why and cannot express it. They then have to spend a lifetime hiding it, because education and employment condemn a person to believe that they are not bright, or good enough. I am sure you may know the saying ‘If you ask a fish to climb a tree it will believe that it is stupid for the whole of its life’. It is not the dyslexics who are stupid, it is society who is unaware of the challenges they face.
My first step on the road to diagnosis was in recognition of the difference between the wealth of knowledge in my head and the content of language that came out on paper or verbally. This recognition led me to question a friend on how she thought. I was aghast as she told me about a tick-a-tape of words running across her head. I could not comprehend that and I explained my own experience of visualising a beautiful, illuminated image with smaller detailed images springing up simultaneously within the main image. I don’t need words, I just know. However, the problem lies in when you have to tell other people what you know. The amount of information in my head at one moment in time, far exceeds my friend’s tick-a-tape of words, yet she would be regarded as brighter than me because she could just repeat a tick-a-tape sentence in an instance and I would struggle to be succinct. This is the story of a dyslexic. We are often highly intelligent, creative 3D thinkers who see the bigger picture. We have a different way of doing things and in seeing the world around us. It doesn’t make us dense, it makes us valuable. If you have a problem or a policy that is not working, find a dyslexic because their bigger picture thinking will provide a prompt, creative solution.
Dyslexia is about a spikey profile where some of your profile maybe in the 90 percentile whilst one or two may be in 30/40 percentile. The gap between the spikes is what dyslexia is. The low spikes tend to be in working memory and processing speed. In the non-dyslexic all the profile points would tend to be roughly along a straight line. In order for a person to understand their level of Dyslexia, an assessment needs to be performed by a trained expert. These are not provided free on the NHS or in education. Instead they have to be paid for privately. The cost is prohibitive at around £500-£600 per report. As they are in the private sector there is no standardised monitoring and critical research came out last year highlighting the poor performance of assessments.
Whilst the BDA currently advertise that 10% of the population has dyslexia, this was a view gained from the 1960/70s when a number of research documents were averaged. However, the government do not diagnose and there are many people who have dyslexia, but have not been diagnosed. So there is no capability to accurately identify the number of dyslexics in the UK.
There is a petition https://petition.parliament.uk/petitions/168137 which is trying to get a diagnosis for dyslexia carried out by the NHS. This is where it should be diagnosed because it is about a brain difference. The government’s response may claim that they already fulfill the diagnosis need because they already diagnose in schools and produce education reports for diagnosed children. However, these education reports are not acceptable in a court of law and the government will not accept them when allocating Disability Students Allowance. An expert’s assessment is required. Indeed, one education authority will not accept the educational report of another, so where is the value?
I feel that the symptoms of dyslexia are similar to the early symptoms of Alzheimer’s and I asked the research charity if there was a correlation. I was told that someone in Canada found a gene in dyslexia and Alzheimer’s but they would need funding to do the research.
I soon realised that dyslexia did not cover all my problems and started researching on the internet. I came across Asperger syndrome and believed I presented with its symptoms. I found CLASS and downloaded all the information to take to a GP to request a referral. I was refused an assessment by CLASS because my parents died when I was teenager. CLASS was set up by researchers who needed a population for their research. They wanted an outcome of Asperger syndrome or High Functioning Autism and therefore developed their assessment tools to meet those requirements. The difference is that someone with High Functioning Autism may not begin to speak until later childhood e.g. 9/10 or later, whilst an Asperger person would speak at the normal childhood rate. They recommended I approach Leicester NHS for an assessment. It took me over a year to obtain a confirmation that I had Aspergers syndrome. I have spent over 40 years in the NHS with doctors who were unable to consider Asperger syndrome because of their lack of education. A copy of the report was sent to my GP and Cambridge and Peterborough Foundation Trust. (CPFT) with a request to provide a care package. They responded by stating they did not deal with Asperger syndrome and from this point my years of struggle with all the public sector in Cambridge began.
Legislation states that the NHS and local authority have a legal duty to provide an assessment of needs for a vulnerable person and this has been the case since 1990. Yet, the statements that came flying at me from the NHS/Local Authority were ‘They would not deal with me because I had an IQ over 70’, ‘they have no doctors who have any knowledge of Asperger syndrome’. I was denied counselling because ‘I was no different to anyone else with the same condition’. This was all very disheartening because had I lived in Leicester I would have readily been provided with help and support. A diagnosis as an adult in both dyslexia and Asperger syndrome is a life changing experience and to leave someone with no support and understanding is quite shocking and a damming indictment on Cambridge for failing to comply with their legal duties. Over the years nothing has changed, they are just pretending to address the issue, to tick the boxes.
Why is understanding neurodiversity so important to the present and future of Cambridge?
The failure to address late diagnosis clearly has an effect on the economy, health and judicial system, but it also affects the talent pipeline for business in Cambridge. There are no programmes in the DWP/Job Centre to provide support for this population in getting into work, however, if you are lucky enough to secure employment, there is ‘Access to Work’ from the DWP, which will help initially, in funding for technical/support equipment and training for the team. This is helpful, but what we need is ‘education for all’ to transform the culture and behaviour within organisations. Business has a right to expect that corporate and local taxes will ensure that Cambridge is one of the most neurodiverse knowledgeable cities in the UK. We have a rich supply of talent in Cambridge and many international employees will always want to have Cambridge on their CV. Would someone for Silicon Valley want to come and bring their family to Cambridge knowing there was no support in this area? Dyslexia is hereditary but the question is out on Autism. We have a responsibility to grow the seeds and nurture the neurodivergent population, whilst it is with us. How can organisations address Wellbeing and stress if they don’t address dyslexia and Asperger syndrome first? The NHS, Education and employment do not yet have the knowledge and skills to accommodate this, but must develop the enquiring mind to do so.
We are competing in the global market place for talent, but are those who manage the recruitment and talent pipelines educated and sufficiently accommodating, to be inclusive of the neurodivergent population? In the world outside Cambridge, many organisations are recognising and targeting this population. Cambridge is being left behind. In the US Microsoft https://news.microsoft.com/stories/people/kyle-schwaneke.html and in Europe SAP http://www2.cipd.co.uk/pm/peoplemanagement/b/weblog/archive/2016/05/16/sap-recruits-100-autistic-employees-in-three-years.aspx have been developing specific recruitment programmes for the autistic population. This is now being introduced in the UK in London https://news.microsoft.com/en-gb/2016/02/26/microsoft-extends-autism-and-inclusive-hiring-programme-to-uk/#sm.000qz6289173fd8ipv019xb9yiyky#ETprW4ZalYCh0gvk.97. GCHQ specifically recruit from the dyslexic population. http://www.dailymail.co.uk/news/article-2764078/Government-intelligence-agency-employs-dozens-dyslexic-spies-special-skills-help-crack-codes.html. What is Cambridge doing?
Cambridge Neurodiversity Hub
I want to help Cambridge build a bridge into my world, so that you too can see and share the quality skills of the neurodivergent population. Cambridge Neurodiversity Hub, aims to educate and facilitate learning for Business in Cambridge. We are looking to create a membership organisation and seeking four founder members to guide its development.
To provide a step into learning, Neurodiversity Educational Workshops will be held in Cambridge in the near future.
Written by Carol Fowler, Learning and Development Manager and Cambridge Neurodiversity Hub.
The One Nucleus blog is written by individuals and is not necessarily a reflection of the views held by One Nucleus.