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

Of course, no instant reply needed, I need to get back to animating a giant spider anyway.

your reply deserves a good one and i'm on the 'phone at the present - I promise to reply tomorrow Cinnabar_wing  :-)

Yet today as well as working fulltime, I was a playground helper so the kids at the local school could go to a bigger green area to play for break, and helped my husband teach 7-11 year olds block coding video games? That is hardly no interest in interacting with others, though I don't get any anxiety around kids (both of mine are in the class).

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. 

hehe - both you and I desire raise for trying!Cinnabar_wing 

Sorry, I am rather cynical.  Perhaps then I'll say, if something is actually better than the ground swell will be so strong as to trancend the barriers of politics. (I'm sorry I was trying to muster postivity and it feels like it reads as sarcasm but it wasn't intended.)

I had my maternity rights walked into the carpet at a large reputable employer, so having a new set of rights to 'protect me', I shall wait and see if life gets better.

I am saddened by that feeling of powerlessness you describe Cinnabar_wing .

Good questions emma90 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....

I know this is an aside irrelevance, but I actually really liked your desciption of amazon colour tragedy. I get this gritty feeling between my teeth thinking of the colour.

I'm never sure if I have that, I never mentioned it in my assessment, but out walking ealier this year on a nice day, up the hills I was looking at the brilliant blue of the sky and it was like a could see air particles zipping about like synapses firing.

It shant matter if any new centers are good or not, as the next switch of power will normally see them closed again. Like the Children's center's that were a life line for families when I had kids that were all shut to save money when they were really making a difference to the communities. 

When I can summon the brain power I'll have a look at the report, but from what you describe a sticky plaster for 'boo boo' for us poor little autists?

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...

I noticed a detail about the budget plans that gives me pause for concern about the longer term plans here.

The NHS are being made to privatise more and more:

https://www.ft.com/content/33cd6644-d40f-4782-bb3f-ad2f14ceb371

A new generation of local NHS clinics in England will once again be built using hundreds of millions of pounds in private money, in a step that echoes the controversial Private Finance Initiative policy.

Mental health services seem very likely to move under this category as we need specialists that don't really work in other areas of health.

Long term it seems that mental health services will be moved outside of the NHS which makes accessibility a big concern. I suspect we are a serious resource drain for the budget and this will e the motivator to pass us on to third parties who can worry about how to monetise us.

Of course this is all supposition but based on the need to economise and the success the governments have in privatising other services (success at least for their pockets) then it seems quite possible.

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

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.

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?