What use diagnosis?

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Why a little knowledge would have helped “Abdul” as he progressed through life

I am a 36-year-old from a middle-eastern Muslim background. I was never diagnosed with anything useful as a child, even though I now know I have dyspraxia. Conditions such as mine were hardly talked about in my community when I was a boy.

Aged nine, I was told I was a clumsy boy, but nothing happened. I had problems with fine-motor coordination and gross-motor coordination. I attended a private school where, even though I am from an educated middle-class family, there were not many people from the same background as me. I did not have the chance to interact with people, making me socially naive. During secondary school, I experienced bullying; during my A Levels, I struggled socially and I felt out of place.

At university, I was not ready socially, emotionally or practically. I experienced difficulties memorising large amounts of information and I had problems due to my learning style. When I studied at postgraduate level, I also experienced problems. I tried to see an educational psychologist but my GP told me that I did not need one, probably because of my high IQ.

At the age of 23, I attended speech therapy and was told that I had dyspraxia. Some people thought I may have Asperger’s syndrome and, in the search for a diagnosis, I had what turned out to be a ten-minute chat with a cold-hearted psychiatrist. He said I had “Aspergers traits” and that they “were not a problem”. The diagnosis was not clear and I had no post-diagnostic support. I now know that “Asperger’s traits” means that I have a borderline case of Asperger’s syndrome.

I thought my diagnoses would help me in my search to obtain a well-paid graduate job but there are barriers; I am not allowed to get support unless the diagnosis is substantial. My diagnosis was not neat and simple. My mother has said that I have never had problems with social reciprocity, but I have had problems as a result of my clumsiness. I learnt about adult dyspraxia in 2008 and I realised my problems were dyspraxic because of my slow reading and problems with short-term memory, multi-tasking, working memory, organisation and perceptual organisations. However, my numeracy skills are fantastic and I have high verbal IQ.

Seeking understanding

I had to obtain the diagnosis privately, not knowing what to expect and how it would benefit me. My diagnosis at the age of 33 explained my difficulties to an extent and there were some intervention techniques suggested, but I did not feel I was treated like an individual. I have been told that my diagnosis of Asperger’s traits might not be diagnosed as anything by some psychologists. Indeed, the psychologist who diagnosed me with dyspraxia said it was “not massively severe” but that it is problematic.

A lot of people do not know that they have a condition; information is primarily targeted at children and  symptoms can be explained away by a related condition. How does a person obtain a diagnosis, especially as an adult, and what is the purpose of a diagnosis?

People need to be treated like individuals. They need maximum support to achieve their potential but they also need information. I have suffered low-self esteem, anxiety and depression because of my undiagnosed dyspraxia. I have a degree and postgraduate and professional qualifications. What might I have achieved if more information on my condition had been available to me? Neuro-diverse conditions affect people of all ages and from all cultures, classes, races, ethnicities and religions.

There needs to be more research regarding dyspraxia and more about it in the media. It is said that a dyspraxic undiagnosed before the age of fifteen is five times more likely to experience mental health problems than the diagnosed dyspraxic. Surely, through better understanding and better information, we could alleviate or avoid much of this pain and suffering.

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3 COMMENTS

  1. I can relate to this sense of frustration and the challenges experienced. I too was diagnosed late into adulthood (aged 37), by several physicians, a phsychologist and a neuro-psychologist with formal diagnosis of ADD, anxiety disorder and a reading comprehension disorder. I also possess postgraduate qualifications and I am from a minority background being of Indian decent, born, raised and educated in the inner city areas of England. Upon speaking with my psychologist, he explained that the tests especially for dyslexia have a cut off age limit after which it become very difficult to diagnose. I have spent almost £15k and counting determining my diagnosis to date and wish there was greater advocacy and assistance for minorities in our situation. My parents and schools actively avoided giving due attention to my educational needs, which I am still trying to overcome.

    • The author of this article would like to let you know that he received a diagnosis of ADHD in Birmingham in August 2020, aged 41.

  2. Yes, there is a lot to be learned from the research perspective. Awareness and acceptance are very important at the initial stages. Hope your advocacy brings more awareness among the community and the young neurodiverse learners are benefitted.

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