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existing in society but not thriving - perspectives of autism - report to the UK Government by The House of Lords Autism Act 2009 Special Inquiry Committee

Phased

Perhaps like other autistic people I consider my experience to be existing in society but not thriving.

I exist somewhat behind a mask from others and most ironically from myself having only relatively recently been diagnosed autistic.

Like other autistic people I notice things that neurotypical people appear not too.  Like other autistic people I also misunderstand things that neurotypical people appear to find necessary to have explained.

It seems to me that as far as much of society works, autism doesn't exist and it does not wish to acknowledge autistic people co-exist within it.

At present I am experiencing this in my own particular way in respect of workplace discrimination which is covered by legislation as I understand it.  I am being hauled over the coals for what as far as I can understand it is pretty much normal autistic behaviour when one is stressed and not treated fairly and reasonably.

I am reasonably well supported and able to engage with this to work on getting things better for myself and others perhaps like me.  If interspersing sessions of curling into fetal position and banging my head against hard surfaces is covered by the definition of "able"... 

The recent report to the UK Government by The House of Lords Autism Act 2009 Special Inquiry Committee New autism strategy must deliver change for autistic people - Committees - UK Parliament is perhaps a step towards overcoming this.

However my first reaction is that on the basis of prior evidence, my moribund floundering and social repression being so deeply seated it will take a considerable amount of activism and self representation in order for significant change to happen.

I wonder if there is a wider thread here about parts of society "cherry picking" what they want to acknowledge to exist, talk about and engage with which is characteristic of neurotypical people more than it is autistic.

Perhaps the "special interest" thread of autism comes about from a weird extension of masking that autistic people engage with almost as a parody of this neurotypical behaviour?

- hehe notwithstanding what I've written if anyone with the same special interests as me wants to join in please do...

Best Wishes

Parents

  • I've yet to read the report, but we'll end up with the usual mess of services, if we're lucky they might even go as far as not just places to help us get benefits sorted out.

    I'm not sure that neurodiversities come as singles, they seem to like company, AUDHD seems to be the most common, I have ASC and partial synesthesia, which nobody seems able to cope with, just take a look at the reactions at what I said on my post about amazon goinf orange and horrible. People think sensory difficulties or extras as I prefer to call them, just mean going and sitting in a quiet room and blowing bubbles, before going back to it, not that it feels like being plugged into the mains electricity. We're well known for being able hear household appliances, but nobody believes us. It can be good, like a cat purring feels like velvet, I get told I'm being poetical, no I'm not this is what purring cats are like.

    Sorry I've gone off on one a bit here, but we're likely to end up with a camel, which is a horse designed by commitee.

  • in reply to TheCatWoman

    You appear to have the same level of low level optimism as myself regarding the outcome of the paper.

    I am probably still daft or desperate enough to think that things can get better because they should.

    I get your analogy about bubble blowing.  It seems to me that for neurotypical people 2 weeks of sun and sand or whatever else it is they go for is enough blowing bubbles to mean they can put up with the usual cr@p they normally experience so why can't I do the same.  The answer at extreme is that if I spend 8 hours in a padded room and 8 hours of sleep in order to tolerate 8 hours of torture.  This one has to experience because without that I can't live is not what is generally considered work/life balance.  The suggestion that one has a choice is true however for many autistic people entirely hypothetical.

    All this comes with an unhealthy degree of guilt because I realise just how lucky and privileged aspects of my lifestyle are compared to the vast majority of humanity living today and possibly throughout history. (something that those supporting the very nature of modern society are regularly keen to point out to me...)

    I get the velvet cat thing - not just poets who can see connections where others don't.

    It is perhaps along the lines of a wider sensory version of onomatopoeia.  Where words match by sound what they describe.

    You being  I would be closer to being TheDogMan - in which fashion onomatopoeia is a puppy :-)

  • in reply to Phased

    In respect of camels and horse the report makes it clear that autistic people need to be involved in creating the strategy - so cynical old me says they can then say - well we consulted them and they....  on the other hand I think we owe it to ourselves and future generations of autistic people to have an opinion and make it clear to all who will listen on this, beyond giving up and saying we'll just get the same old sh1t...

  • in reply to TheCatWoman

    I agree wholeheartedly with your description of experiences  which resonate with mine.

    Cynical? or instead a realistic assessment based upon experience and observation?

    I admit to being almost burnt out to near non-existence myself from such experiences.  From which position the capacity to push back against what seem like overwhelming odds is deeply weakened.

    However it is perhaps people such as me and yourself who "know it as it is" who are best positioned to tell it like it is to those who want to hear.

    "Don't get mad get organised." Springs to mind.  I wonder whether the "Autistic People's Revolutionary Party" would have any legs.  These days I am even concerned that typing something like "revolutionary" (oops I done it twice) could see me imprisoned tho'.

    Do you know? I've just flipping had enough!

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  • in reply to TheCatWoman

    I agree wholeheartedly with your description of experiences  which resonate with mine.

    Cynical? or instead a realistic assessment based upon experience and observation?

    I admit to being almost burnt out to near non-existence myself from such experiences.  From which position the capacity to push back against what seem like overwhelming odds is deeply weakened.

    However it is perhaps people such as me and yourself who "know it as it is" who are best positioned to tell it like it is to those who want to hear.

    "Don't get mad get organised." Springs to mind.  I wonder whether the "Autistic People's Revolutionary Party" would have any legs.  These days I am even concerned that typing something like "revolutionary" (oops I done it twice) could see me imprisoned tho'.

    Do you know? I've just flipping had enough!

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