Learning the language of Autism

 

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quotes and explanations from people with autism

The lady Ellen Van Gelder who write the book I am not strange I have autism, calles obsessions Zests! I really like that, Zest feels like a happy word a positive word, where obsession is often viewed with a negativity that suggests it isn't of any good or harmful even.  Zests, to me means sparkly, full of life, meaningful and useful, happy and certainly nothing to be afraid of.

I have read the book and have decided to share a few quotes and explanations from those featured in the book.  Like a taster to share:

Roz Blackburn is an autistic woman who I had the pleasure of listening to a good few years ago.  She features in the book, she says that she watched achild's stage play, she noticed the feather falling to the ground and the way the lights shimmered across the stage, she noticed the outfits and the fabric that was worn.  She thoroughly enjoyed the whole thing, but didn't have a clue what the play was about.  She saw every detail in it's beauty but couldn't put all the bits together to create the whole.

Most of the 11 participants in the book said that switiching activities was very challenging for them. Even as adults, and having felt they could cope much better now with such changes, this was still one of the most challenging things for them.  They spoke of changing their own routines which was too, challenging.  The end of an activity, then the space between the end of one to the beginning of another could cause their heads to feel like they were spinning, like a hole of emptiness. So, some had to create a ritual. I am interpreting this as a thread for the inbetween part of each activity.  

For non-autiistic people the simpliest of things like moving from one activity to another can be a major anxious experience for those with autism.  The flow of something ending and another starting. I can understand how that could cause upset.  Jeorge likes the flow of things and if they are interrupted this can cause major upset, with the addition of a transition challenge.  

Most also said that withdrawing from people and everything on a regular basis was incredibly important for their sanity, wellbeing and overall health.  Many spoke of becoming ill if they pushed themselves too hard (this was different for each of them) they had all become very good at assessing their own limit point and finding their own solutions to help restore their energies.  This is mental and emotional as well as physical. If they did not do this most said they became very ill, an actual physical illness.  

To isolate themselves was a part of their daily lives, they didn't see it as a negative thing, simply a way for them to maintain happiness and an equilibriam of their joy as a human.  I personally found this to be fantastic self care, so many of us ignore our bodies and our stress levels until we literally pop. As people with autism are mostly if not always super sensitive to all aspects of human living, their need to withdraw daily and sometimes a few times a day isn't anything other than self care and love. 

Most also said that the most tiring part of their existence was communicating with others.  Social settings of any kind were mostly exhausting.  Most have learnt over the years to 'act' to play the part of a non-autistic person, some suggested they didn't often understand the why's and wherefore's of certain behavious of non-autistic people but did learn that such behaviours followed others.  I find this amazingly clever, the fact that they even bothered to figure this out is humbling to me. Not  because I think it is not possible, instead the fact they bother at all. The effort that goes into complying with 'normal' society even though it generally can cause enormous amounts of stress and anxiety and sometimes even ridicule is so immense.

For me reading this book gave me a bigger understanding of people with autism, the super sensitivty of their experiences.  judgment on others is non existent.  They experienced many up's and downs, some sadly even bullying on a large scale, but spoke of it with such elegance. It hurt them, yes, they sensed their differences caused others upet and sometimes anger.  Yet they still carried on, holding no grudge to those who had caused them pain or sadness.  Again, a very humbling read.

Each person with autism I read about or speak to, educated me more and more, I know the more you lern and accept the easier it is to be around.  for me as a parent this is especially helpful.  When Jeorge is haivng a hard time and screams or kicks or falls to the floor I can now get a sense of why he needs to do this.  It isn't to piss me off, or to be naughty...it is simply him expressing and letting go of what needs to leave his body.  It is so overwhelming that it manifests into a physical outburst that once relieved can be restored back to calm and harmony.

Obviously this can cause challenges as the bigger the child with autism grows, a 6ft man thrashing around on a floor isn't as safe as a small child.  Which to me says, the more we learn and understand we can accept reasons for such behaviours.  We are not then fearful it is when we do not know we can get fearful.  This changes the way we support someone.  Let go of the fear and we can support in a very different way, as they grow into adults this harmonious way of being together and supporting does help reduce such severe anxiety driven behaviours long term.  

Easter holidays
inspiration from a quote by Laura Tisoncik- high &...
 

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