yea fine just not so good with the tech stuff. 

So its just another, newer form of the above mentioned? I can use those, just yea, the Geek speak goes right over my head! 

Geekspeak - sorry nothing to do with books 

My speak is about the toolset to use, once you get over the basic fear of the unknown then you will be writing just like:-

• text messaging,
• forum message posting,
• Word/Docs/Pages,
• Excel/Sheets/Numbers,
• Powerpoint/Slides/Keynote,
• email and
• Facebook/Twitter/WhatsApp

It is a way of collaborating/sharing information on a project/task/idea like this thread outside of the forum = consolidation on the consolidated information here into a single document.

Obviously if we are copy/pasting something that is past research linked then we would also have to make sure the evidence is current/up to date, I can maybe help a bit with this.. I think? Possibly

Thanks Bookworm, you are right and not such a late adopter/luddite that you make out (typical self-deprecation of those on the spectrum).

Without understanding how the configuration of the forums are configured on the server then that is where help is required.  

If the forum "data" could be extracted into a file to be read by Word processor/spreadsheet then Searching would be so much easier as well as possible flagging keywords to help consolidate things.

You guys I think my head is going to explode.... I will do what I can to help but any input I have will be purely none computer tech related...

Sorry, What is Slack? I'm seeing so much computer speak and don't have a clue what I'm reading. I'm a bit of a computer dyslexic. lol

Tinyexplorer said:

The content and resources- we could start some key resource themes as new threads and that could attract people with expertise and desire to contribute
for example a thread on sumptoms management etc

Hi just a quick observation, point 3

. Some or maybe most of the info and links to specific topics are probably already on here in different threads. I wonder could there be a way of teasing out what info/links already exist without having to make extra work for ourselves? The groundwork may be right under our noses?

I am not at all computer savvy so would be useless at locating this but maybe the NAS mods or whoever could help find the info? Just thinking why make extra work if it is already there and could be up cycled with a bit of copy and past?

P.S I've only just discovered how to quote, lol

Oops, I forgot about a G-Suite site with possibly Lumapps/other Wiki type interface. With G-Suite then permissions can be controlled too albeit I am not the worlds greatest advocate of that due to 30 years of Microsoft (DOS, Windows and Office).

Just got into Slack but cannot see and documents yet.  Do some of the sharing settings need to be re-done or something?

Tinyexplorer said:

Do you already have an idea, a visualisation of hat it could look like?

It could look like a collaboration of the best areas of the internet in one site but with input/feedback from those here with Accounts.

We could have a:-

• Microsoft Sharepoint intranet site, elements of a website, Common Microsoft Office type user interface and associated Wiki and Forums.
• Mediawiki type sub-site for encyclopaedia articles with a Forum solution on the same server.
• Slack, G-Suite and/or Office 365 collaboration, etc for those of us geeky for behind the scenes discussion/ideas.

This needs really to be part of the bigger/wider NAS Charity web server host site as there are Server specific experienced people there to create a sandbox for developing the information as well as higher level access/permissions.

Eccentric1 said:

I feel these pages could be laid out better and make use of some further voluntary advocates for the Support Groups, Social Groups, Befriending and Mentoring.  What better way than to collaborate with those of us with the knowledge, skills and experience of the condition.

Do you already have an idea, a visualisation of hat it could look like?

This is so inspirational, people with different expertise coming together. 

After reading through the posts on https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/15461/if-we-could-design-it-ourselves-what-would-as-services-look-likeand https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/15479/forum-contents-non-techy---if-we-could-design-it-ourselves-what-would-it-look-likehere comes my War & Peace and hopefully broken down for easy reading to everyone:-

Content and Structure

• With the right support network (Server and baseline software) for a site (e.g. here) then that lays the foundation stones and gravitas of everyone on the same hymnsheet.  Note I am good at software usability and development albeit not an out and out coder and Servers (and setting up) are alien to me.

• With the right site layout, maybe a mixture of Autism/Aspergers/PDD-NOA/etc knowledge, help, links to other information, breakdown of the spectrum to include markers/traits and Strengths, etc then it should make navigation of the site easier

• The layout of the site and pages needs to be simple which is where WE come in – we know our condition, likes and dislikes of various aspects of the internet (encyclopedia, forum, web pages, etc) which is where collaboration on the design/layout by US for the benefit of ALL.

• With Server Admin covered then the next layer would be the website admin (trusted individuals) down to Editors/Contributors – Now, the biggest metric is the 90/9/1 internet culture where 90% only read information, 9% editing/contributing and 1% creating new content - https://en.wikipedia.org/wiki/1%25_rule_(Internet_culture)

• Those of us quite IT literate could help to build some consolidation of knowledge from articles into useful “single point of knowledge” articles/information. This includes awareness for everyone on what it is rather than the pre-conceived ideas from TV/Film.

Schools and Services

• I feel these pages could be laid out better and make use of some further voluntary advocates for the Support Groups, Social Groups, Befriending and Mentoring.  What better way than to collaborate with those of us with the knowledge, skills and experience of the condition.

• This could be improved IMHO especially for Adults wanting to socialise/help others on the journey.

• Knowledge that is easily available (without being overwhelming) to help with all steps on the Journey from initial thoughts (I am different) through the myriad of steps (Work, Health, Legal, Rights, etc) until we have gone a long way down the road, post diagnosis.

• Help with those of us who identify others who may have the condition to broach the subject easier with others (with the condition, partners, children/siblings and/or parents) because it is a condition that form who we are (personality) and can be a huge strength to harness.

• It may be an ASD/ASC trait but not everyone is programmed to navigate through the endless treadmill of Educational exams, I know that I learn differently and cannot regurgitate at will.

• Explanation that Stress, Anxiety and Depression are not only conditions but should be treated as the same keywords to get somewhere from the position you are at (Anxiety is treated as the only keyword that opens doors).

Visibility

• As it is kept being mentioned, PRIDE/LGBTQ is now such a movement and up there in lights with physical disability but invisible disabilities are completely ignored wrt Equality/Diversity.  As soon as the Equality Act 2010 becomes more out there for those of us with mental health conditions in line with LGBQT visibility then the ignoramuses in the world can still get away with what they have always done.

• Criticisms come from the ignoramuses who do not listen, do not want to listen/change and would rather we leave employment and out of their hair.  You have created the mental monster by your treatment of someone different but do not want to change/support in correcting the mess you have created.

I made a slack workspace and a channel for the autism strategy (we can make more channels for other things):

Follow the invite link here: https://join.slack.com/t/beameup/shared_invite/enQtNjI1MDg4MTc5NjgxLTkwOTBkYzc1MjY2ZGYxZjBjYWQyNGMxMWI2YjJjZjBjOGJiNGIxNDVhYmRmOGQzMzFmZmViODhiMTk4NWE2OWU

I pinned the link to the strategy and also put @TinyExplorer's summary into a google document set for us all to edit and pinned the link in the general channel on slack. Thought it would be easier than trying to edit it here? Although we can edit it, I think should start with comments/suggestions rather than editing the actual text at this stage?

Should we maybe try to make a time to 'meet' in slack and discuss it in 'real time'?

What do people think about the idea of feeding into the autism strategy consultation as a starter?

Tinyexplorer said:

make suggestions, additions, deletions. [it does not include yet latest from Lagrangian as I was writing, to be added]

It is an attempt at collaborative working.

Formatting: I will use italic for comments

If we could design it ourselves, what would AS services look like?

Introduction

It is estimated that about 1 in 100 people in the general population are on the autism spectrum. This means that there are potentially XXX adults in the UK. Many of them are not diagnosed, many are in the process of getting a diagnosis. It is the experience of many autistic people diagnosed i adulthood that:

• Access to diagnosis is patchy and there is low awareness of autism diagnosis services
• Current resources are not good enough to meet the demand
• Given that waiting times can be 2-3 years in some regions to get an assessment, many people are in need of support pre-diagnosis before they reach a crisis point. 
• There's very little ongoing support for AS adults, especially for those who appear to be higher functioning or are older
• Access to support is limited by means testing leaving many adults without the support they need
• Access to support is limited to the Mental Health support pathways, no support outside MH services
• Support system is like a regional lottery
• There seems to be very little involvement on the part of AS people in defining the services they need
• NAS service orientated around parents - it gives the impression of being very much by-and-for people *around* AS people rather than AS people themselves.
• We don't get 'invited to the table' of setting the agenda for support services and scientific research
• People often feel they are not being taken seriously
• AS people feeling not listened to by professionals, being fit into the limited services made available, designed by non autistic people and not listening to actually autistic people about what services they actually need
• Thee is very limited scope to contribute, get heard and get involved, there is no space and process for listening and for trying to organise something that NAS has no time or funding for. Autistic people can do a lot to support each other and basically themselves, but we need some structure and support for that..

What would AS services look like?

Holistic, integrated, preventative, life long

National framework, no post code lottery and variation

Defined and designed by autistic people

Based on progressive vision of autism, social model of disability, autism acceptance

Supporting personal growth and life skills as defined by autistic people themselves, support and coaching in coping with autism in achieving life goals.

Support for health needs, for the entire family, for employment, aging, housing.

Life skills defined individually in broad and flexible terms by autistic individuals. For some it is taking a bus, for others it is avoiding fall into depression, starting a family, or even retaining their job in professional capacity.. 

What sort of resource, spaces, support would you have liked (or would like now) that you haven't been offered?

The need for an open national Autistic Self Advocacy organisation that would provide a forum, an open process for autistic adults to discuss priorities and needs and provide a voice, at a national scale that is distinct from the parents organisations and the voice of professionals working in autism,which would enables to discuss and  focus on issues important for autistic people, but not yet covered by existing structures. Also a space and process for autistic people to contribute, get heard and get involved, there is no space and process for listening and for trying to organise something that NAS has no time or funding for. Autistic people can do a lot to support each other and basically themselves, but we need some structure and support for that..

It could be a brunch of NAS or an independent organisation. NAS is great in many ways and does essential work and services. But they are not set up to do all things, niche things. There is a scope for an additional self advocacy and peer to peer support organisation that could cover autistic needs and priorities for which NAS has no capacity.

Some of the things that need addressing are:

• Access and support with employment - see below
• Support in relationships - see below, not based on autism hate groups
• Training professionals on a progressive non limiting model of ASD to respond to the needs of autistic people and support them in their coping. personal development and fulfilment of their life goals. Professionals who understand ASD and actually listen to autistic people.
• Ethics of genetic research into autism. I read articles that ethics i any autism research are 'weak', maybe it's time to strengthen them.
• Use of language about autism.(broad based, beyond autistic/with autism) 'Nothing about us without us'. 
• Autism hate speech and harmful content online about autism. Example - concerted campaign to invalidate Greta Thunberg based on her autism, her face, her eye, her 'lack of empathy'. Advocating to or depriving autistic people from their freedom of speech based on their autism should not be normalised.
• Equal justice = disability hate crimes are not covered by the same laws as racial hate crimes, this makes them toothless.

Directions of service development

An online forum

1. Lay out : there needs to be a clear, concise area where people can go to be the single point of access to all things wrt our condition (diagnosed and undiagnosed) to help rather than having to search for the right/wrong keyword on the internet/forums.  
2. Resources, summarised as tailored help to navigate the law, health, my mental health and dealing with service providers. 
3. Pinned threads, thematic guest presentations, interactive Q&As
4. 1:1 online advice functionality or forum advice, private group discussion functionality
5. People could volunteer to lead on this or that support to other members, peer to peer support
6. Virtual social groups by topics and interests, like byking, 
7. Improved functionality, experience and security

Support:

1. It should be holistic. The holistic approach to health needs and life skills, family support, personal development. all the services integrated better. Psychologists, psychiatrists and developmental disorder services, 1:1 support, life skills coaching, family support, employment, social care, housing.  The probable pattern within my family is undiagnosed autism followed by years of difficulties then initial contact with services due to related problems (depression, anxiety, OCD, psychosis) which are picked up as if they've suddenly come out of nowhere.  When really I think the undiagnosed autism with no awareness, insight, support or help was the soil on which all of the other issues grew.'
2. Start to address the underlying difficulty of autistic people - support their personal development and life coaching in attaining their goals.Professionals to guide us of all ages to develop, be independent as possible (which is probably individual). Support individual development. Train professionals on a progressive non limiting model of ASD to respond to the needs of autistic people and support them in their coping. personal development and fulfilment of their life goals. Professionals who understand ASD and actually listen to autistic people, process what is actually said.
3. A national service framework for autism, like the one for older people. Care needs to be standardised throughout the Uk, autistic people need to be recognised as having as many differences between us as NTs at the moment we all seem to get lumped into the same mould for garnering all of this support . There should not be post code lottery, national standardsthat we can expect will be adhered to from assessment to diagnosis and beyond. 
4. Some service to help with symptom management [for co-occurring conditions?]. Because I have to put a lot of effort every day into symptom management and sometimes its stuff that I don't really want to blurt out on this forum. But there is nothing! So I keep on doing my own research and coming up with random ways to manage symptoms. Actually one day I might post my combined ASD/ABI guide to managing symptoms on here just to amuse people with some of the really random stuff that I come up with. But hey, if it works it works, right?'
5. Support for people, including HFA intoemployment, not means tested, not only for families on benefits. People wasting their talents at home and going through circles of depression are more expensive to society than people who are having fulfilling work and paying taxes. Every large employer should have a link person who is an advocate for autistic adults who could also cascade train their teams where needed, much as in nursing we have link nurses who specialise in say, diabetes or palliative care and cascade any new info to the rest of the team.
6. Employment mentoring and coaching, aiming to also help people in professional and managerial roles to cope and retain  their highly skilled employment. Like business mentors and career coaches, but autism focussed. Too many people here are managers and engineers hopping from job to job, ending up in lower skilled  roles. They could even be fee based to those who can afford. It is not like Access to Work, about paying for reasonable adjustments, but about personal effectiveness coaching for coping and getting acceptance in those managerial occupations, it should be 1:1 for the person,, not dependent on the employer like axess to work, it should not require disclosure and formal dx.
7. Mental health support, diagnosisand  counselling services for family members, family therapy, relationship counselling and coaching. Not based on models promoted by some autism hate groups, but based on the double empathy model and using ethical counselling. I'd like to see a 'buddy' system where NT's are trained in communicating with AS people and can give advice on handling NT's in one's life (work and personal) .
8. Signposting. Continuous 'hand-holding'. A co-ordinatorto act as a kind of hub for me and signpost me, reliably and promptly, to services that can help with my specific needs.  This co-ordinator should have been assigned as soon as autism was mooted, and seen me through the whole assessment process, advising and drawing on other services as we went along.   A detailed, agreed plan would help.  
9. Psychological support:  Individually tailored psychological support involving a detailed assessment and formulation of my issues,t he maintaining causes and a collaboratively constructed way forward.  The support MUST be informed by autism awareness and NOT off the peg
10. Family support:  For me autism is a family issue and once one person is diagnosed, others should have the offer of assessment straight away.  In our case it's clearly also affected the family dynamics in a number of ways so this should be recognised and acted upon.  Too many individual issues dealt with by separate departments, with no autism awareness and no joining the dots.
11. Another resource that I would like to have would be life skills development summer camps. They have a lot of these summer camps for AS children and teenagers in the U.S., but there aren't many for adults. It would be very useful to be able to attend a 2-week summer camp, where they can teach some basic life skills and provide some team-bonding training. It would be a great way to make friends and learn skills.
12. Ideally there should be support groups in every area, separate from social groups. These should be run but someone from the local autism services and should perhaps cover a different topic that people diagnosed with AS as adults may be struggling with. Even if they only ran once a month, it would be good to have the option to be able to go along, learn new information, meet other adults newly diagnosed with AS and swap ideas with both them and the person running the group.

Research

1. Why people are bullied, discriminated at work, why disclosure often leads to dismissal? What would normalise acceptance in workplace?
2. How to bring teenagers with MH breakdown back into health, studying and being productive?
3. High quality ethical research into the relationships and marriage, based on the non-ableist model of the relationship and double empathy gap. Assessing and understanding both partners focussing on making better communication, better connection. 

We'll have to bring it to them - will get something together shortly - they were reviewing the autism strategy recently - if we can do it by 16 May, we could form a group and respond as a group to the consultation survey: https://www.gov.uk/government/consultations/review-of-the-national-autism-strategy-think-autism-call-for-evidence/review-of-the-national-autism-strategy-think-autism-call-for-evidence - if they're not asking the right questions, we could also write them a supplementary letter? @tinyexplorer summary would be a place to start?

Ooops, got sidetracked! Away weekend but will do it shortly . . .

Bookworm said:

you certainly seem to know what you are doing.

I hope you are not serious .. lol

Look is everything ..:)