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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

  • That report is a bit of a baffling read... what does an 'autism strategy' even mean? What does it look like? How do you create one strategy for a group of people who exist on a huge spectrum and there's no one set way to support everyone?

    Like you, I very much feel like I exist in a survive not thrive mode all the time. I've gotten so used to masking and acting the way I think I should I don't really even know how I actually naturally behave? I don't understand myself so I don't know how I would expect someone else to?

  • in reply to emma90

    Good questions  thanks :-)

    I'll have a go at answering them one at a time.

    What does an "autism strategy" even mean?

    In the original document it says that is a legally binding guide to local authorities and NHS bodies as to what services and support they should provide to autistic adults.  The government according to the act has to come up with a strategy that enables this.

    This act of parliament says so and government must come up with a strategy to deliver this.  It is the only UK law specifically to improve support for people with one specific disability.

    So, I then think was does that mean for the likes of, say, you and me? Answering that personally I acknowledge that I am disabled by neurotypical society.  That means that neurotypical society should support me to not be so and the strategy should enable this,  

    On a pragmatic note I am somewhat bemused by "legally binding" and "guide" in the same sentence because this provides so much "wiggle room" for how we are supported.  I get that it is legally not appropriate to break the speed limit however if my loved ones were in an ambulance then I would expect it to do so as safely as possible for all concerned.  However why they don't establish clear "must dos" on the topic of how a simple base level of support necessary for autistic people is lost on me.  Unless they know that it can't be done... (or am I being cynical here?)

    What does it look like?

    At present the document looks like this:

    Autism Act 2009

    The new report says that the goals of this Act is not being delivered.  Autistic people are still being let down by public services.

    Public services, including the government, is still failing in its duty to enact this law.

    "How do you create one strategy for a group of people who exist on a huge spectrum and there's no one set way to support everyone?"

    Great question - the point is the law says they should - that's for us to advise on and be consulted about and for them to work out and provide the means for how...

    your 4th question is more of a statement - the answer to that is ultimately up to you - Difficult tho' it is.  I suggest to you that you decide based on what information you have including advice and counsel, your personal goals and ethics...  Whatever you decide on a personal level if I agree with you and it's not harming anyone else you will have the support of me (and others like me - hehe time and circumstances permitting!)

    Your 5th question about understanding yourself gets into territory that is a bit more philosophical - sorry 'cos it gets a bit dodgy 'cos it creates questions for you rather than answers.

    Who says who we are - well a lot of this is what others tell us - including that we are this and that according to a deficit based diagnosis.  e.g. I know I don't conform to neurotypical expectation and regularly get blamed for it (hmm... guess what I'm autistic...)

    So you and I have lived most of our lives, so far, pretending to be someone who we are not - masking.

    By neurotypical society's expected capability I am disabled.  Up to you and other autistic people whether they agree with that about themselves - I'm just speaking personally based on experience.

    The ultimate aim of the Human Right Act 1998 is that all people are treated with dignity, respect, equality and fairness.

    Personally, perhaps because I have messed up on neurotypical expectations for these with, almost completely and truly, no intention to do so I personally do my level best to uphold these principles.  Maybe I am more aware of transgressions to this because I'm disabled and regularly get my human rights ignored in this respect.  Meanwhile I see neurotypical individuals and society dancing rough shod all over them...  

    Who you or I are is a sum of our thoughts, actions and behaviours - some of these are defined in the autistic diagnosis and we might have to or chose to put strategies in place to change these if we hae the means to.

    Other bits are.'t deficiency based - they're the other bits that get missed because they and us are always focused on "what's wrong" with us.

    Difficult tho' it is in the current circumstances to believe and live out, you and I and other autistic people are potentially who we want to be....

  • in reply to Phased

    This is rather philosphical, but which state in which you exist feels closest to you -havign described your 3 x 8 hour states further up, or non at all. I have been trying to marry the memory of what I am like trying to talk to people in my assessments and being put in the bracket 'reserved to those who have no interest to interact with others and seem irritated or anxious when coming in social contact'.  Is that really me? Or is that only having to talk about personal stuff with strangers? I can come up with amazing ideas when I can think about things in my own time, but on the spot I blank. Being measured by my lowest state is rather demeaning. 

  • in reply to Phased

    Small windows, say no more! (I have edited it so it hopefully reads better now!)

  • in reply to Cinnabar_wing

    I wasn't sure when i read it - hehe my sorry!  one gets so nervous of saying or doing the wrong thing...

    Thanks for your wishes

    you too.

  • in reply to Phased

    Oh sorry sorry sorry, I meant that must have been destablising for you to recieve such hurtful comments, not on me reading them!

    Wishing you strong stability and yes a stronger base on which to build up from!

  • in reply to Cinnabar_wing

    I am sorry that the comments I shared are destabilising.

    In so far as one needs confidence to be able to exist and interact with one's environment I recognise that something that may destabilise may appear problematic.

    However if what happens thro' the experience is a stronger grasp on reality then confidence that is rebuilt afterwards potentially is more reliably based.

    Best Wishes

  • in reply to Cinnabar_wing

    Thanks for your kind thoughts  

    You have added to the metaphor perfectly :-)

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