(This is a guest blog from my dear friend David Henderson on an important topic which I suspect will interest every reader – I don’t believe the 1 in 100 are affected statistic for a moment!)
Autism is difficult. It’s difficult to describe, difficult to categorise, difficult to support, difficult to live with – and most of the time, difficult to see.
In this article I’ll provide a limited description of autism together with how I discovered that I am autistic. This will, I hope, help the reader towards a better understanding of autism.
For me, ‘Autism’ (in full ‘Autistic Spectrum Disorder (ASD)’) and to a lesser extent ‘Asperger Syndrome’ were conditions that I had heard of but knew nothing about until, just over three years ago at the age of 67, I was diagnosed with Asperger Syndrome. Since then I have tried to find out as much as I can about both, although as far as I am concerned, Asperger Syndrome is simply a specific form of Autism.
According to the National Autistic Society, Asperger Syndrome was introduced to the world by British psychiatrist Lorna Wing in the 1980s. The term derives from a 1944 study by Austrian paediatrician Hans Asperger (new evidence about his problematic history has recently been revealed and provoked a big debate). Many people who fit the profile for Asperger Syndrome are now being diagnosed with Autistic Spectrum Disorder instead. Each person is different, and it is up to each individual how they choose to identify. Some people with a diagnosis of Asperger Syndrome may choose to keeping using the term, while others may prefer to refer to themselves as autistic or on the autistic spectrum.
For the purposes of keeping this article as simple as possible, I will simply merge ‘Autism’ and ‘Asperger Syndrome’ as ‘ASD’.
ASD is a spectrum condition. All ASD people share certain difficulties, but being autistic will affect them in different ways. Some people with ASD also have mental health issues or other conditions, meaning people need different levels and types of support. Data suggests that 7 out 10 folk with ASD have mental health issues. People with ASD see, hear and feel the world differently to other people and also think differently. If you have ASD, you have it for life – it is not an illness or disease and cannot be ‘cured’. Often people feel that ASD is a fundamental aspect of their identity.
People with Asperger Syndrome don’t have the learning disabilities that many autistic people have, but they may have specific learning difficulties. They may have fewer problems with speech (many autistic folk are non-verbal) but may still have difficulties with understanding and processing language.
Latest data suggests that 1 in 100 folk in the UK have ASD. However, as ASD is often hidden, it is believed that there is significant underdiagnosis amongst our population, especially amongst women and older folk.
Because ASD is a spectrum condition, each individual with the condition is likely to manifest the wide range of characteristics very differently, both in terms of the presence and weight of each characteristic. The characteristics include communication, sensory, emotional and relational aspects. Many of these are very difficult to identify and to assess, often because those with ASD have limitations in their self-awareness and also in communicating their symptoms. In addition, many with an ASD have so-called ‘co-morbid’ mental health conditions which may be confused with ASD eg anxiety, depression, psychosis. This can lead to misdiagnosis.
And, because folk with ASD see and experience the world differently from others, they also have different personal ‘strengths’ and ‘weaknesses’ from others. Examples of some of the strengths are strong focus, attention to detail, and problem-solving through complex pattern recognition.
So readers will understand why it’s difficult to describe, difficult to categorise, difficult to support, difficult to live with – and most of the time, difficult to see!
My Asperger Syndrome assessment was made in early 2017, so it’s still quite recent. It was my counsellor who first suggested the possibility, although by his own admission he’s not an ASD specialist, so his suggestion was tentative. It took a lot of persuasion of my GP to agree to referring me for assessment, but he did eventually. The outcome was a major shock for me. I had no idea of what ASD was beforehand, as I had never had reason to explore or try to understand it. My late wife Anna wasn’t as surprised, although she hadn’t suspected it either before my counsellor suggested it. So it took me a year or so to learn more about it (and I continue to do so), and in the process learn more about me.
The assessment makes lots of sense to me now about events and behaviours in my life to date, much of which I had either ignored, suppressed, repressed or been wholly unaware of – childhood behaviour, absence of small talk, discomfort in busy social situations, missing non-verbal cues from others, the huge amount of time spent on my own preparing for events where I needed to work out what could happen so that I would be prepared for it as I couldn’t react easily to situations in the moment. But the biggest learning for me was that the ‘mask’ that I had unconsciously developed through my childhood and teenage years so that I could cope with the world at large was a mask that fooled even me – I believed that the mask was who I was.
Since I retired from full-time employment in 2010 God has clearly had a plan to help me finally accept that the person that He created is not the person I thought I was. Anna had known this for years and had tried to both help me realise this through her own loving challenge and encouragement and also to seek professional and spiritual help from others. But I had constantly brushed this off, citing my work as being so challenging and time-consuming that I couldn’t spend the time needed to explore this with her. As you may imagine, my refusal to explore and change caused us many challenges and much pain. But I retired from my workaholic lifestyle in 2010. And that surfaced rocks that I had only dimly been aware of before. The first of these was my anger outbursts, which I now recognise more generally as autistic meltdowns. I agreed to attend a CBT clinic, which helped me hugely in identifying anger triggers and finding ways to respond differently when I was aware of them. This, together with Anna’s promptings, led me to recognise the need to self-examine and to become more self-aware. Through a time of real challenge, I then sought the services of my Christian counsellor with whom I have worked now for a number of years. And then Anna introduced me to a Centering Prayer group which added the meditative spiritual dimension I was missing and which has helped me so much in moving on in my Christian journey. Shortly after that came my Asperger Syndrome assessment. So God had put all of these pieces together, along with Anna’s amazing and continuing love and that of many friends as well as my loving family, in order to help me to both find and also to accept my real self. And in the process I have felt released from so much baggage and wrong-thinking that I now feel free to be me and to carry on my life, my voyage of exploration, thinking, sharing, laughing and rolling with the downs as well as the ups.
I hope that my case study, even in summary, has helped to flesh out some of the realities and practicalities of ASD, reflecting that ASD can be both a disability and a difference.
Please feel free to contact me if you want to discuss any of this article further.