Student Mimi explains at how looking after her autistic sister is a duty she and her family are happy to accept.
Two years ago, I wrote an article for SEN Magazine about my relationship with my sister Lucy, who has autism (A tale of two sisters, SEN67, Nov/Dec 2013).
I am now 19 and I’m starting to be questioned by others about the way I feel about my 23-year-old sister, whom I love dearly. So I would like to continue our story and try to explain how our relationship works.
Two lives
I have just completed my first year as an undergraduate reading Molecular and Cellular Biochemistry at Trinity College, Oxford. My elder sister Lucy, however, is still living at home and I hope, for her sake, that she will continue to do so indefinitely.
Her needs are great; she requires 24-hour care, love and support to help her cope with everyday tasks, severe anxiety and her debilitating fear of weather. Autistic traits dominate her character, yet she has a remarkable ability to pierce deep into your soul with her beautiful eyes, which immediately masks the enormous learning difficulties that hinder her profoundly in life.
We have an amazing mother and father, who routinely bear the weight of the world upon their shoulders to make sure that Lucy and I have the most fulfilling lives we could possibly have. For that, we are so very lucky.
Togetherness
When I was young, my parents tried to protect me from the reality of our family, to enable me to live my own life and be free from the worries that Lucy brings – the fear that she is not happy, the worry of her being ill, the exhaustion of being a carer, and the sadness and concern that her obesity brings (her medication makes her put on a lot of weight and her disabilities mean that she cannot exercise properly).
They now realise that all I want is to be part of their dream team; our goal is always to seek and provide the best for Lucy, and for all of us as a family. Ultimately, we have Lucy to thank for who we are; our empathy, our sensitivity and our drive all stems from the way in which Lucy has made us lead our lives. Although the care of Lucy is a huge responsibility, this should not be viewed with negativity and pity. Lucy is my dear sister whom I would, of course, be devastated to have taken away from me – just like anyone who is close to their neuro-typical sibling. Therefore, just because she is a hundred times more needy than my friends’ siblings, there is no reason for my feelings towards her to be clouded with a “responsibility” label that brings with it negative connotations. I love caring for her and I love spending time with her. For example, it was the best thing for me when I passed my driving test and we could go off in our little red car, just the two of us.
Family values
For many people, your family is your haven, filled with unconditional love. Indeed, your family is one of the most important things in your life, whether there are lots of difficulties involved or not. It gives you the solid grounding you need to define who you are; therefore, for someone as vulnerable as Lucy, family love is the best thing that I can give her. One day I aspire to show scientifically how love is so important for an individual. It’s so exciting that the “love hormone”, oxytocin, is potentially being used to help with conditions including autism, depression and anorexia – although nothing beats the real thing.
I frequently find myself having to justify to people why I have decided to put my family first, why I always have my phone on me (just in case), why I choose to go home so often when Oxford is a great place to be, and why I rarely have a lie-in. On the other side, I think I get credit for things that I really shouldn’t be praised for: “you’re so good to your family” and “it’s amazing that you look after Lucy”, people often say. For me, though, I find it difficult to comprehend why the things that I do for my family seem so unnatural for people. Isn’t caring for one another supposed to be in our DNA? Surely, if you truly love someone, wouldn’t you do anything for them?
Supporting difference
Of course, in an ideal world, Lucy would be fit and healthy and living away from home, perhaps with a stable job or in higher education at the age of 23. But, due to a conglomeration of genetic abnormalities within her genome (which I hope one day will be sequenced along with mine), she cannot and will not do these things. Does that make me love her any less? Should I love her less? No. It makes me realise that Lucy needs a lot more love, support and acceptance; for her, simply getting up in the morning is a massive challenge. Imagine that!
I often think about dementia patients, even though I have not had much first hand experience of this, and how traumatic it is for the family and the individual to go through such degeneration of character. As I understand it, people living with dementia may face these key questions: is it a loss of mind and is it a loss of self? Those with dementia return to a state in which many characteristics obtained through cognitive development are lost. Arguably, they “lose their mind”.
But what about those who are never able to go through certain stages of neurological development? Have they never had a mind? What I ask you to think about is what it would be like to be in a constant child-like state, in terms of cognitive abilities, but to no longer be in a child’s body and to no longer have their fearlessness built-in to you. What do you think it would feel like never to have thoughts beyond basic ideas, never to understand the wonders of the world, never to be independent, never to be on your own, make decisions or chose relationships. I’m not trying to compare autism to dementia, but I think considering these conditions in parallel draws attention to the fact that just because you never had something it doesn’t necessarily mean it is any less frightening or painful to be without it; it may simply mean that the suffering is for life rather than just being for the final stages of life. And if you believe that those with developmental disorders such as autism have a mind, which of course they do, the term “loss of mind” for a person with dementia needs to be re-thought.
Would you find yourself saying that your parent or you sibling suffering from dementia was not your responsibility. I think not. It’s not ideal, but as a very wise teacher of mine once told me, you have to play the cards you are dealt to the best of your ability. I think this is a wonderful motto to take through life as, although you may not be dealt the ace, you haven’t lost the trick before you’ve played. There is no point in asking “why me?” or saying “it’s not my problem”. That will get you nowhere. To quote business leader Dame Gail Rebuck, “My definition of success is to leave a place a little bit better than when you got there”. Before I was born, Lucy didn’t have a sister to love her. Now that I’m here, she does.
Challenging opinions
If for some reason a person’s mind is not as able as most people’s from the start, the goal for me is to try to make the life that this individual leads as fulfilling as possible. Help from us can facilitate this. I also believe that every mind is as interesting as every other one. Everyone has a spark of brilliance inside; it just may not follow the usual patterns. Everybody is worth our time and attention.
I think I will always be on a mission to challenge the stereotypical view of a carer’s responsibility. I’m also on a scientific mission to try to gain understanding of conditions such as autism at the molecular level. Truly, I don’t believe that there will ever be a “cure” for autism and learning disabilities; the conditions are far too complicated and the reality is that the phenotypes that manifest themselves are what arguably define the individual as who there are. Therefore, ethically, in my opinion, the situation is complicated. Who is to say that the neuro-typical mind is superior? I definitely have some autistic traits and my father most certainly does. What I do think is important to try to target, though, is how we can provide better care and developmental therapies which could greatly improve the quality of life for individuals with autism. For this to happen, a greater scientific understanding of the condition is needed.
I recently heard autism campaigner and philanthropist Dame Stephanie “Steve” Shirley talk about the issue of brain banking, which I found inspiring, as she is the only person who has made me seriously consider donating my own brain to science. Before hearing her speak, I was, to be honest, very squeamish about the idea. I introduced myself to her at the end of the talk and told her briefly about Lucy. Part of her reply was: “you must remember that she is not your responsibly”. Although I realised that she said this to look out for me, it spurred me on to write this article to show that I would never want to be free from my Lucy.
I often feel as if my family is an army, fighting for Lucy and those like her, as they cannot make their way through life on their own, nor should they have to. Lucy is my sister and my friend; it will continue to baffle me whenever my love and devotion for her are ever questioned.
Further information
At the request of the author, the names of the author and her sister have been changed.
Author: Mimi .
