One which is very relevant now – in World Autism Awareness Week – 26 March to 2 April 2018
Pioneered by the National Autistic Society (NAS), World Autism Awareness Week aims to draw attention to the 700,000 people living with autism in the UK – both to educate those unaware of the condition, and to help make the world friendlier to those who are affected by it.
Her most recent post was just too wonderful not to share …
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When I cast my mind back to the time of the ‘The Ant Kisser’, when Anna randomly started kissing the ground and I realised that what she was actually doing was kissing all the ants she could see in the cracks on the pavement, it was in that moment that I realised that Anna really does have a beautiful mind. When Anna was very young, I remember commenting that I felt that Anna saw the world in a completely different way to how I did; Anna would notice the tiniest details on things, find the tiniest drop of water hanging off of a leaf, notice the cobwebs in the dew on the grass and when she stood in the wind, feeling it ruffle her hair and having to adjust her stance so it didn’t topple her over, I could see how content she was. Anna seems to be at one in nature, drinking it all in (sometimes literally) and marvelling at the wonder of the smallest little thing.
Very often, when I see something to do with autism it is represented by a puzzle piece, as if to suggest that a part of the individual is missing. When I had the first inclination that Anna was autistic the many articles I read, at the time, seemed to suggest that having autism was an affliction, that the autistic individual has something ‘wrong’ with them, they weren’t ‘normal’ and that somehow, they either needed to be cured or that that individual needed to be lead down a path that taught them how to behave and think like a ‘normal’ person. That type of ethos repulses me because it is damaging on so many levels.
I knew that Anna’s diagnosis would be one of autism long before I attended the appointment so whilst I was prepared for the appointment I wasn’t prepared for the ignorance of the clinical psychologist who said ‘we’re all a little bit autistic really’. I was rather surprised by such an off the cuff comment, because, you see, if we were all a ‘little’ autistic, there wouldn’t be such stereotypes and myths about autism and many autistic people wouldn’t face the challenges that they often do because society would be more understanding . The fact is, each person is unique regardless of whether they are autistic or not.
Anna expresses herself and shares her feelings in a different way perhaps, but that doesn’t mean to say that what Anna is feeling is any less valid than anyone else. I’m not looking at the world through rose tinted glasses, I know that there will be many challenges for Anna to face and I don’t doubt that there will be struggles ahead. I know that autism is a lifelong disability, but at the same time I don’t see autism as the mill stone around Anna’s neck that many people may see it as, and initially I did too. I see this now as an opportunity to chuck out conventional expectations and see where things take us. The instant that I decided that we wouldn’t do things because other people think we should, as a parent, it removed a huge amount of pressure and it enables us to focus on what is important. For me, the most important thing, above everything else, is that Anna feels loved for exactly who she is.
I do feel that society has a somewhat stereotypical view of autism and so when my thoughts first turned to autism, my mind conjured up examples such as Dustin Hoffman’s portrayal in Rainman and the brother in ‘There’s something about Mary’. Whilst those characterisations may represent some individuals on the Spectrum it is not representative of ALL individuals on the spectrum because each and every human being is unique. It’s exactly that, a spectrum; it is as unique as the individual and it is as ingrained in that individual as the colour of their skin or the colour of their hair.
In the same way that Biodiversity refers to the variety of variability of life on earth, Neurodiversity is a concept where neurological differences are recognised and respected as any other human variation. Those differences in our neurological make-up make us who we are.
I don’t see Anna’s diagnosis as a label and I dearly wish that society didn’t see it that way either. I see Anna’s diagnosis as a passport to securing the right help for Anna, right now. Without a diagnosis we are completely unable to access the right support and services that will have a direct impact on Anna’s future. I often hear the word ‘label’ banded around in news articles and in the comments section of said articles and I find this immensely unhelpful. A diagnosis, and the road to getting that very diagnosis, is an extremely long process and at times a very stressful one, and I just don’t think the word ‘label’ is worthy of being related to such an in depth process. I don’t want to ‘label’ Anna, I want to support her to help her play to her strengths and have the most wonderful life possible. I also strongly feel that we only use the word ‘label’ when it comes it to a disability that is seemingly invisible. For the most part, if we see somebody in a wheelchair we are accepting of their challenges, but strangely, because autism and neurodiversity is often ‘invisible’, there seems to exist in society a certain amount of apathy towards those ‘invisible’ different abilities. It is that that keeps me awake at night. Society can be very unforgiving of differences and we need to make great strides to reach a place where we can celebrate neurodiversity and I know, from experience, that we are a long way from that point yet, although I do believe we are inching ever closer in the right direction.
Over the Christmas holidays, and much to my absolute delight, Elsa discovered the Wizarding World of Harry Potter. I’m a big Harry Potter fan and when I used to commute in to London, I read all 7 of the books on that commute, over the course of a year, lugging even the biggest of the books back and forth every day, squished in to a commuter carriage oblivious to my surroundings and lost in the world of Harry Potter. It was on Christmas day morning that I realised that using Harry Potter as an example is a really great way to explain to Elsa about Neurodiversity; You have Wizards and you have Muggles. The Wizards and the Muggles live alongside each other and the Wizards often go to great lengths not to ‘stand out’ from the crowd and blend in to society. There is nothing wrong with Wizards or Muggles and neither one is more important that the other. You cannot tell a Wizard and a Muggle apart just by looking at them and often, both the Wizards and the Muggles are misunderstood by each other.
On my quest to understand neurodiversity, I find Anna’s approach to life and development fascinating. We embrace Anna’s differences wholly and with much love and affection. Parenting any child is not an easy task, and I find it all too easy to get swept along with ‘how we should do something’ based on preconceived ideas of what society expects. But what if we throw caution to the wind? What if we allow Anna to develop at her own pace, in her own time, respecting her choices and her boundaries? Einstein famously said, ‘if we judge a fish by it’s ability to climb a tree, it will spend it’s whole life feeling stupid’ and I think of this every time I hear someone telling me what I ‘should’ be doing for Anna. I feel very strongly that there is so much emphasis on what our children should be doing, that we forget that what children really need is to be nurtured. We need to help our little ones find their strengths. I believe that when we remove the pressure of conformity an individual truly can flourish. If we allow Anna to find her own path in life then we know that she will have an understanding that her choices matter and that we respect her. Almost 2 years ago, I spent the deepest, darkest hours of night time wondering and worrying about Anna’s future, these days I am optimistic and now I look towards Anna’s future with wonder.
I’ve recently read the excellent book ‘What every Autistic girl wishes her parents knew’, and I feel that Emily Paige Ballou spoke to me personally about my beautiful daughter’s beautiful mind when she said
‘ I want you to know that what she might never do doesn’t necessarily tell you anything about what she might do.
I want you to know that your daughter is a whole person, just as she is. That she is not lacking any essential feature of what it means to be human. There is no missing piece of her you have to find; she is all there, even if you don’t know how to understand her yet. I want you to know that she does have an intact mind. It’s just a mind that may work differently from those people around her, in ways that are still obscure to most of us, in ways she doesn’t know how to tell you about yet.
I want you to know that she has a future as an autistic person.
I want you to know that your daughter is of value to the world, and the world has a place and a need for her.’
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