Have you ever found yourself in a situation where you understand every individual word but the sentence still doesn't make sense? Those with experience of building self assembly furniture would probably answer with a resounding yes. Have you come close to tears of frustration when trying to communicate with someone apparently speaks the same language as you? If you have ever had to deal with an overseas call centre the answer is probably yes! For most of us those things may be irritating or even upsetting, but they only happen occasionally and then they are quickly forgotten.
For people with Asperger Syndrome or Autism communication difficulties are a constant challenge. To some extent it is a hidden disability; people with Asperger Syndrome can often be pedantic and obsessive about certain subjects which other people find exhausting or even irritating. They find social interactions difficult because they are not good at reading or predicting situations and they often struggle to interpret emotions or the subtle subtext of what is being said. However these difficulties can be masked to some extent by a wide vocabulary and good linguistic skills, so other people may not realise that the person has not understood. Instead of being understanding, other people can become hostile and angry.
On Saturday I met a 45 year old man who has been the victim of online bullying, because he didn't fit in. He hadn't done anything wrong, he was just a bit obsessive about his favourite subjects which other people found annoying. I felt terribly sad when this chap told me that he knows a lot of people, but he has no friends. We chatted for well over an hour and I realised that he is a very knowledgeable, interesting man who means no harm to anyone. I just want to make a plea from the heart, please don't be too quick to judge people who are a bit different because they may have a hidden disability. It takes all sorts to make a world, and just a little bit of understanding and tolerance makes the world of difference.
A telephone call on Friday afternoon left me in tears, but that is the end of the story, I need to start from the beginning. At 6am on Friday morning Robbie had left for work and I was standing in the kitchen ironing shirts and feeling very apprehensive. Two members of my family had important meetings that day and there was not a thing I could do to help either of them except to iron shirts for my son in the hope that looking neat and tidy would help him to make a good impression.
I have spent my life worrying about him, trying to keep him safe and generally trying to do my best for him, he may be 17 and almost grown up but I still worry and I still do my best to support him. Life is often challenging for people with Asperger's Syndrome or Autism but it can also be mentally exhausting for those who love them. I don't usually write about my son's Asperger's Syndrome because he tries so hard to be just like everyone else. He doesn't want to be labelled, he just wants to be accepted as himself, but in order to achieve that he has had to work hard to understand other people and to understand himself. It has been an up hill struggle, but I am so proud of him because he never gives up, even when things go wrong he keeps on trying.
He had applied for an important role within his school and on Friday he had to attend interviews as pat of the the selection process. We all feel anxious about interviews, but for my son facing people he didn't know, managing to maintain eye contact, to answer questions and (most important of all) to know when to stop talking was a really big challenge for him. I felt apprehensive all morning, and it was a relief to get a text from him saying that the interviews had gone well. He told me that he would know the outcome by the end of the school day, so he still had an anxious wait. I wished him luck and reminded him that whatever the outcome, it is all good experience.
I can't believe the change in him since he moved to that school. They have helped him to believe in himself, to believe that he can do things and to dare to aim high. His old school had high academic standards and he did well there, but I never felt that they cared about him as an individual. His new school had a different outlook and he has thrived.
I watched the clock, 3.15pm came and went and I convinced myself that it must be bad news. Then at almost 4pm my son rang to say that he had been selected as a vice president of his school for the next academic year (boys are not allowed to stand for president because it is a girls school). I was just on my way out to the supermarket when I took the call, I was so please for him and so proud of him, that I sat in the car with tears running down my cheeks. It has done him the world of good going to that school.
When I was a very young child I enjoyed stories about a magical little man called Mr Pink-whistle who had all sorts of adventures because he could make himself invisible. I liked to imagine all the mischief that it would be possible to get up to if I was invisible. In books and comics invisibility is a common theme, from the Invisible Woman, the first female superhero created by Marvel (who just happens to be as old as me) to Harry Potter and his cloak of invisibility, the ability to disappear has brought them power, excitement and adventure. People will tell you that in real life it is not possible to become invisible, but it is, the difference is that in real life it is a very lonely and isolating experience.
There is a dutch artist called Desiree Palmen who creates amazing phots of invisible peope. I like the pictures, because they express visually how I feel sometimes, not exactly invisible, but not quite there, perhaps the right term would be overlooked. An infection in my inner ear left me with balance problems, dizziness and slight hearing loss. It has been like that for years and I cope quite well most of the time, but I don't cope well with crowds or noisy environments. I am used to the dizziness but sometimes in crowded places I feel very unsteady and vulnerable, it is almost like a shrinking feeling. It reminds me of Mrs Peperpot a storybook character created by Alf Prøysen who never knows when she is going to shrink.
The other day a friend of mine asked "if I ceased to exist would it matter?". She was not threatening to end it all, she was just feeling invisible and she was posing a very important question. I know quite a lot of 'invisible' people, people who for various reasons struggle to fit in. For some struggling with a disability makes them feel isolated especially when it is a hidden disability that is not understood by others. Mental health problems can be especially isolating and some people who are weighed down by worries, fears or sadness feel that life is going on around them but nobody knows or cares about them.
We all take life for granted until something puts our future or the future of someone that we love at risk. Then we suddenly review our values and we realise that the things that the world thinks are important don't really matter at all and we learn to value the little things and the things that do not have a price tag such as love, friendship, time, health, warmth, sunshine and freedom. It is true that each life is just a tiny insignificant speck in the sands of time and that when someone dies the world carries on just as before. However the answer to my friend's question is yes, it would matter if she or any of those invisible people ceased to exist.
It would matter to everyone who loves them and cares about them. A person who ceased to exist would live on in the memory of every life that they touched, and most people touch many lives in one way or other. Someone who had hurt or wronged them would never be able to ask forgiveness or put things right and they would have to carry that guilt through life. If someone ceased to exist, the good that they may do in the future would not happen. They could not pass on the wisdom that they had gained from their life experiences or prevent others from making the same mistakes, they would not be there as living proof that you can get through the bad stuff. They could not encourage others or set an example for others. Finally if someone ceased to exist the people who love them would be devastated, they would always wonder 'what if ...' For some it may perhaps be one loss too many and the pain and grief may change their lives for ever.
So why am I writing about this? Partly because April is National Autism Awareness Month. I have close family members with autistic spectrum disorder and I know how confusing and isolating life can be at times. However I also know that he is interesting, clever, loving and very special. Don't miss out, look around you for the invisible people, don't be afraid of difference, please don't pass them by.
