Growing up with an autistic sibling can be tough, but through the best and the worst of times, 17-year-old Mimi never lost faith in her sister Lucy
Having a sister who has severe learning difficulties is way different to what most people would imagine. As the younger sibling, I have never known anything else and I have never wished for anything different. People often say things like: “I’m amazed you never sound frustrated” or “Why do you go home from boarding school every weekend?” Of course, I do sometimes feel frustrated, but never for long enough for it to stick in my memory. I am incredibly close to Lucy and I hope that this article will give you a glimpse of what it has been like to grow up alongside her.
Lucy is 21 and I am 17. Lucy has severe autism as well as multiple disabilities but she does not have an exact diagnosis. She has very little understanding but has an incredible memory, so she recognizes everyone and everything she has seen before, knows everyone’s name and has a very broad vocabulary. This often makes her appear much more able than she actually is. She needs 24-hour care, she cannot wash or dress herself and she is dangerously obese – through no fault of her own.
At the start, I wasn’t really questioning about Lucy. I never fully realised that she was different. Sometimes, we would have to return home early from holidays as she was anxious, or hospital trips would be made as she had had a seizure. All in all though, we had fun together, we drew pictures together and we went swimming. We were like any other siblings at my school.
My parents had the balance just right; Lucy and I were treated as equals but had our totally different needs catered for. Lucy listened to loud music with the blinds drawn to hide her from the ever-menacing weather that she feared so much, and I had my animals that kept me busy for hours on end.
As I got older, I started to think it all through a lot more. The realisation hit me when my new housemistress for senior school asked me: “how will you tell your new friends about Lucy?” It had never occurred to me before that I would have to explain things to people; at my prep. school, everybody knew and loved Lucy, so it was not an issue. The idea of telling my new friends was daunting, as I wanted to explain Lucy just right; I wanted to portray her in the best light. Suddenly I became very protective of her.
As I made new friends, explaining about Lucy was the hardest thing. When was the right time? It would have been easier to have had a sign on my head that said “I have a severely mentally handicapped sister. I love her but it does mean my life is different. I do not need pity but I do need understanding and acceptance.” My friends are amazing, though, and Lucy loves to feel she has friends in them too. It’s great when she drops me off at school and comes into the boarding house to say hello to everyone; the whole house becomes a warmer place once she is there.
Keeping it real
Our lifestyle is tailored around Lucy; my parents need to be highly organised. Every day is a challenge for Lucy as she suffers from huge anxiety of the unknown and the weather too. Everything has to be put away; Lucy might easily call 999, draw on my homework, try makeup on the furniture or cut clothing to shreds. These are only puerile issues but they emphasise Lucy’s lack of understanding. She does not do such things maliciously; she is simply trying things out.
As a child, I was devastated to walk into my room to see my new skirt cut up or my book torn. Really, though, such occurrences have taught me a lot about life. Trivialities like this really do not matter, especially when measured against the distress of sitting in hospital waiting for Lucy to wake up from a traumatic seizure.
Lucy has made our family so close and we support each other so much. Now that Lucy is older, we understand the sort of care she needs. We used to try to encourage her to fit in as “normal”, as we thought this would be best for her. Looking back, though, I believe that this is why she would cut or tear things up – she would be confused, frustrated or frightened. She cannot express her feelings appropriately, so she needs us to root for her all the way. She needs to be understood and to have advocates fighting for her in this hostile world; this is what she has how.
I started to board at school last year, as I really needed to concentrate on my A levels. I found it tough to settle in because I have always loved to be at home. It is a safe place with no judgment, where Lucy is happy and where we can be a family. I would go home every weekend and, in truth, I think one of the main reasons is that I missed Lucy and my parents.
People often tell my parents that they must “let Mimi be free and have a life.” But they have never held me back. It has always been my decision to come home in term time. I will always want to go home and I will always be there for Lucy, as she is always there for me.
I believe that what is needed now is a convergence of compassion and science. We need to understand more scientifically about complex mental disabilities so that we can be better equipped to follow a process of thinking. I often cannot work out how Lucy feels and I know that how I care for her is sometimes not the best method at all. I still want to learn.
I know for certain, though, that compassion and patience are needed. At a societal level, awareness needs to be raised and campaigning must go on. Lucy is particularly lucky as she has two loving parents, and me too, who will always fight for her. Some people with learning difficulties are not so fortunate and their best interests may not always be considered. Those who cannot fight for themselves need us to fight for them. They deserve it just as much as anyone else but they cannot do it alone.
At the request of the author, all names have been changed.