I am not usually stuck for a quick response to a question but this week I hesitated. Whilst out on a walk, I had a casual conversation with a stranger who was asking me about Lucie, I mentioned she was an assistance dog and worked with my son. The next line was 'Why? What's wrong with him?' I suppose a perfectly logical question but it caught me out. My gut reaction was to say 'Nothing's wrong with him. Why? What do you know that I don't!?'. Which in my eyes is true. But this of course is not what he meant, even though it was phrased in a direct way. So I gave the standard answer...'He has autism, etc etc.....blah blah blah'....
I walked on thinking about that question - 'What's wrong with him?' There is a lot to think about with those few words. The first to me is about disability and how we treat it. I have never thought that there is anything 'wrong' with Alex because he is disabled. In fact in my head, I think of him as just a bit broken, like your favourite teddy that has an eye missing, but you still love so much. It works, its just different. But its an interesting word - wrong - does that mean a disabled person is wrong, and the rest of us are 'right'. Maybe this is where society is slowly trying to drag itself forward. I think a lot about labels and classifications we apply to people, and what it all means. Parents feel very strongly about this issue, some battling like mad to avoid a label or diagnosis being slapped on their child, and others fighting like mad to get that diagnosis and label to help them. And all the time it battles with our concept of what is 'normal', 'typical', or any similar term you may prefer. It is a long way off but I will cherish a time when society moves to a point where we are not 'wrong' because we have additional difficulties. It seems to me at times we are going in the opposite direction, where the gap is narrowing of what we classify as 'normal'.
And at what point do we become 'wrong' - I suppose what I mean is what makes us 'disabled' - at what point is there something wrong with us - when it is significantly impacting on our life? Well that would then mean extreme shyness could be debilitating. Is it when we get diagnosed and are given an official label? Is it a life long permanent condition? We don't think of a broken leg as a disability. Is it when we need additional help - drugs, interventions, assistance - when we can't function alone...maybe that is where society defines us as disabled. I am sure there is a legal definition, but I think the reality is a blurred line, and we all have moments when we can't function, in a minor or major way. For me, I have my own minor stuff, it is when anxiety kicks in and I can't function, most often in a supermarket (I blame Tesco for having too much choice - just one type of baked beans is required - give me 26 varieties and my head explodes). I can't breathe, my throat goes tight, and my chest feels compressed when I am anxious. I often leave, feeling teary and unable to complete the task. (Discovered solution is a shopping list!) Simple anxiety, and so common. But apparently I am normal. The one thing I have learned on my journey is we all have something going on. I am not in fact telling you anything majorly personal by saying I struggle with anxiety, because as you read this I guarantee you can think of something you struggle with - social, emotional, physical - we all have stuff. So ability/disability I am not sure there is anything less black and white. It in itself seems a spectrum we are all on, so not sure there is ever a ' them and us ' - its just the impact on our lives.
I think the other reason the mans question hits my buttons, is because it raises a whole lot of feelings around how to answer it. I have lived my life with two children with an invisible disability. It has really opened my eyes as to how people are treated differently whether we can see their issues, and if we 'accept' what we see. Even the NHS, Social Services and Education are guilty of predjudice between more physically evident disability over other equally serious conditions such as mental health conditions, Alzheimers and so on. It has been a fascinating change for me this month to have a physical sign of disability, an assistance dog. It has launched me from the silent lonely world that we have functioned in, to high profile disability, where the public can see there are issues, even if it is not evident what they are. I have been treated like a VIP in these last weeks, being helped, smiled at, offered assistance, all because of Lucie. This is in the same places I could go in the past, where I have felt isolated, embarrassed, stared at and self conscious, trying to deal with our challenges. I don't mean to imply that a person with a physical sign of disability gets treated well, I am sure, sadly, it can often conflict that. But a four legged cute furry sign apparently is changing how we are treated. Maybe it is the confirmation that as a public we are kinder to animals than humans! Paws for thought. Maybe if we all walk round with assistance dogs, we will get treated better - despite 'what is wrong.' I would be fascinated to hear how people with other disabilities have found their treatment in public after having a dog. Is it the ice breaker to bring the 'able and disabled' worlds closer together?
And to be fair I should answer the question - What is wrong with Alex - simple answer - he has autism. But here's the thing - 600,000 people in the UK have an Autism Spectrum Disorder, around 1 in 100 people. Yet how many people know what that means? I still struggle to explain it. There are text book answers, there is the media perception, where 'Rainman' or Savants (gifted autists) spring to mind - but the reality is much more complex. Autism affects every individual so differently, so the answer to what is wrong is individual to each person.
The textbooks tell you that a person with autism has difficulties with communication, social interaction, imagination (routines and rigidities) and sensory challenges. But our kids don't read textbooks, and they all have unique personalities which gives them each a very special version of their own.
For Alex, oh - I've just realised I don't want to share this bit - it seems a negative view of him. I'll type quickly....
- Alex has very limited speech, and understanding
- He is often in his own world, with limited interaction
- He has extreme sensory issues, with global sensory processing affected (complicated, I'll cover sensory issues another day!)
- He relies on routine and rigid behaviours to cope, and needs repetition
- He has sleep disturbance difficulties
- He has mobility challenges, toe walking, bolting, obsessed with moving vehicles (grabbing them!)
- He has a limited diet - and only eats cornflakes, rice crispies (both dry), gluten free toast, hovis biscuits, and on prescription a fruit compote and food supplement shake.
- He wears nappies
- and so on!
What I really want to share is his smile, his giggle, his amazing skills on a computer, and the fact he is the heartbeat in the family that can make us all melt in a microsecond. His singing makes me stop and listen wherever I am. His ability to get away with murder with a cheeky smile is legendary. He makes us proud, humble, and always in pure admiration of his achievements.
There is nothing wrong with Alex. He is just perfect.