Hidden disabilities

It’s a profound difference in neurotype – the way the brain is wired. It is present from birth and cannot be cured, since it is not an illness. Psychologists define it as a “spectrum disorder”, meaning that it has many characteristics, such as social and communication issues, repetitive behaviours, and sensory challenges. However, the language of “disorder” and “deficit” is resisted by many autistic people, who prefer to see it in a more positive way. Our different perceptions of the world can mean that we have great focus and attention to detail and are often highly creative and original thinkers who are generally very clear and direct. Being autistic does not necessarily mean you have a learning difficulty, but many autistic people do have an array of other conditions as well. Our understanding of autism is evolving all the time. It has had a chequered history since it was first identified around a century ago. There have been many misconceptions about it and its true extent is only now being fully appreciated.

“Spoons” is a way of describing energy loss. You start the day with, let’s say, ten spoons. Various activities take spoons away, until you are left with none. The trick is to manage your spoons through the day. It’s not easy to get it right.

Read the full interview (PDF, 795kb)

I was diagnosed in 2018 at the age of 60. My hearing loss was diagnosed in 2009 and was part of the consequences of Ménière’s Disease, a balance disorder that also affects hearing.

As a child I became very interested in music as an alternative means of expression. I loved words and read voraciously, but at the same time I was aware that there were things that I could not express verbally. I now know this is called alexithymia, which many autistic people have: a condition in which one experiences emotions but has difficulty understanding what they are. So, I think music taught me about emotions. My interest in composing developed out of a childish obsession with the avant-garde and atonal music. As a teenager, I loved dissonance and wanted to create my own original sounds. That interest has evolved, but it remains a key impulse.

I was invited to do some lecturing in Music in 1986 at what was then called Leicester Polytechnic. I ended up getting a full-time lectureship and it all developed from there.

It provides me with a structured world within which I can pursue my ‘special interests’, because they are not seen as a problem but rather a strength! I enjoy the interactions with new ideas and the constant sense of discovery. I also love having the resources of a university available to me. I am very good at my job too, which helps. I have had numerous awards for excellent teaching and research.

By understanding the rules of the game. Academic interactions are generally purposeful and structured, even when they appear playful and unpredictable. What I cannot abide are random, inconsequential encounters.

Back in 1999 I was asked to help design a digital gallery at Phoenix. What I created, unwittingly, was an autism friendly space. Over the past year, they have invited me back as part of a group of disabled people to help design their new extension. It’s well worth a visit. I’m delighted to say that it is really autism friendly, with low stimulus colours, clear signage, beautiful acoustic design, appropriate lighting, and much more.

Most autistic people get overwhelmed by too much or confusing information, bright lights and uncontrolled sounds, certain smells and textures, unclear signage and bewildering spaces, and so on. Really it is a question of thinking through every aspect of the space from an autistic perspective and designing accordingly.

They don’t “have autism”. It’s not a disease. They are autistic. Accepting that is a good first step for any parent. In fact, it’s all about acceptance really. Accepting the reality of their autism and understanding how to make their lives better, rather than trying to ‘correct’ their behaviour. I recommend highly the book Avoiding Anxiety in Autistic Children, by Luke Beardon.

It is completely overwhelming. I have many sensory issues, and the combination of loud sound, unexpected demands and, usually, flashing lights, means that I go into a ‘shutdown’ and cannot move or speak. It’s very dangerous.