On autism, art and my sister Lucy

Autism Acceptance Awareness week, (27 March to 2 April) (and its theme this year of colour), is particularly poignant for me as 2 April marks exactly four months since my sister Lucy died (unexpectedly but peacefully), and the day before her birthday.

Lucy had an exceptional eye for colour in the various designs which she created, such as the couple I’ve included here.

Lucy had some health difficulties as a child and adolescent, and as an adult was diagnosed with Schizoaffective disorder (which has symptoms of schizophrenia and bi-polar disorder). But only three years ago, thanks to my eldest sister Liz who had thought Lucy might have autism and introduced her to a psychologist, she was diagnosed with Autism Spectrum disorder.

For Lucy (and our family) this knowledge was like a lightbulb being switched on and, for her, a welcome diagnosis. She said ‘it felt like the bricks in the wall are starting to come down’. Some of the things that had been put down as mental health challenges suddenly made sense.

Coming from a big and close family, there is real regret that we didn’t realise ourselves (and earlier) that she was autistic – how did we miss it? But society has come a long way in its understanding (and acceptance of) neurodevelopment disorders since Lucy was a child in the 1970’s and 1980’s. From an early age, Lucy struggled and needed support but, when my parents took her to a paediatrician at an early age, the focus was on physical issues and their concerns weren’t listened to, even though my mother was a nurse with three other children.  And school was no better.

At the local (good) comprehensive school that she and I attended in Edinburgh, Lucy was immediately put in the ‘remedial’ class (as it was then known), she told me she was made to feel stupid, and it was a long time before she was diagnosed with dyslexia. Lucy’s experience at school, socially and academically, was the polar opposite from mine - whereas I had a group of close friends and got into university, Lucy was bullied, not unusual for neuro-diverse children especially several decades ago, and left school with one O’Level, Art.

I now realise what a struggle Lucy had as a teenager and since then as an adult.  She always had to work hard in social situations and worried what to say (or what she had said), which must have been exhausting for her. However, like many autistic people, she was very good at ‘masking’ and fading into the background, especially within the dynamics of a big family where discussions at meal times could become quite heated!

In the process of sorting out Lucy’s flat, I came across some of her writings (one of her local disability groups was a creative writing group).  One of them read ‘Friends is a difficult thing to have in my life. I had issues at school. Somehow friends were hard for me and I ended with none. I became close to the family and their friends. All I say now is that friends are much needed for everyone’.  So true, and something to which all of us can relate.

Lucy’s mental health issues really came to light in her 20’s when, for the first time, she had her first breakdown and attempted to take her own life. And then, as we know is common for those on the autistic spectrum (especially undiagnosed), her challenges were seen purely as a mental health issue,  managed with long stays in psychiatric hospitals and lots of medication.

As autism research charity Autistica have reported, seven out of ten autistic people have a mental health condition and this is no surprise given that autistic people can struggle to fit in to the world in which we live, and due to the lack of understanding which can lead to discrimination or stigma at all levels.

One of my regrets is that Lucy’s life might have been very different had she had a diagnosis earlier on. While of course autism is a spectrum and no two autistic people are the same (and a diagnosis is not right for all), I believe it would have led to a better understanding (and patience) from all those around Lucy including family, friends, medical professionals and former work colleagues. And it might have encouraged all of us to try and have an idea what it was like for Lucy to get through each day.

As a natural fixer and a doer, I was constantly encouraging her to attend the various mental health groups recommended to her (or even to leave her flat where she lived alone),  and got frustrated with her when sometimes she would go to ground and avoid people.  

Liz and I lived close to Lucy and she was a huge part of our and our children’s lives. Like it is for many siblings, it was a reciprocal relationship. For example, Lucy came over to our homes for regular meals, we would each help her with her paper work or sorting out her flat while she would babysit or dog sit. And, provided she had advance warning – you couldn’t really ask at the last moment - she never let me down.  

While I know visits to my home were an important part of Lucy’s weekly routine, I regret that I didn’t spend enough time just talking to her, trying to understand her conditions, even since she was diagnosed with autism.

This was reinforced when I recently watched the brilliant Chris Packham BBC documentary, ‘Inside the Autistic Mind’, a must see for all. While it was quite triggering for me given how recently Lucy died, the first episode where the female comedian ‘unmasked’ herself to her mum (to whom she was close and who thought she knew her daughter well) was incredibly powerful.  

I’m also aware that, in our day to day language, we often compliment those who have conditions such as autism when they manage to achieve something that the neuro-typical majority, in our day to day lives, value or think is essential to fit into society. This can just encourage such masking (and exhausting) behaviour. The programme is a good reminder to all to accept those with autism and their characteristics without any positive or negative spin.  

Over the years, I’ve had clients who have been on the autistic spectrum and it’s important for us as lawyers, or for other professionals (and judges),  to make time to understand their particular challenges and needs.  For example,  for some clients entering into mediation, face to face meetings or giving evidence in court, or even just receiving our call without any prior warning, can be overwhelming.

One outcome of our increased awareness of neurodiversity is the understanding of the positive aspects of those on the neuro diverse spectrum, not least their different outlook. Lucy was incredibly talented at art, could pick up on the good and kindness of people, had a great sense of humour and an incredible recall for dates, family events etc, just like my father to whom Lucy was close and who sadly passed away less than a year before Lucy. We’re going to miss their joint recollection for family stories.  At Dad’s funeral,  Lucy told us that Dad had said to her years ago, ‘you are capable of so much’ and I think of those words when I think of the challenges that Lucy faced and regularly overcame. 

I have hanging in my home,  from an exhibition put on by Lucy’s local charity ‘Art and Soul’, some of her and her friends’ beautiful pictures. For them, the art they exhibited and the colours they used, enabled them to shine.

So let’s use this week as a good reminder to accept and respect all our differences.