National Autistic Society – your involvement

2015: The NAS’s all day AGM in York on Nov 21. Now awaiting results to the public protest and leafletting of attenders, for the NAS to acknowledge the issue of wronged child authors. Mark Lever’s extraordinary claim to be unaware of the issue makes a shocking picture of how NAS offices have worked, not bringing ordinary spectrumites’ enquiries to their own leaders’ knowledge.

It is good that this action stands alongside the Open Letter to the NAS Trustees, signed by a good list of autistic grassroots. That also puts NAS on the spot very necessarily, for its long deficient pattern of not representing us in what we want to say and not listening to our life concerns. This situation is what the NAS needs and is well overdue to get from the folks who it is supposed to exist for!

This link is an open letter to the NAS, a UK scale action, about its standards towards us: “trying to adapt to what it thinks its audience of the moment may prefer” and “We are concerned that the NAS is a charity that is not listening to the very people – autistic people – it purports to support and address the needs of”. Which has always been my feeling, and why we needed ANS to emerge instead.

As you can see on the link page: NAS reply of Sep 11 is just a businesslike holding acknowledgement, it says nothing of substance.

28 Nov 2015


25 Feb 2016 reply from Jenny Paterson, Scottish section, making some good sounding moves on contributing to the awareness process. Showing a bettter attitude than her predecessor, but next comes seeing whether it will make an effective difference. By admitting her own unawareness of the wronged child authors issue, she has damned her cynical predecessor Robert Moffat, (who disrupted the NAS too the way he jaunted out of his post at no notice) and national NAS until now, for not even making her aware.

After which, 20 Sep 2016 she has damned herself too: see this outcome 10 months of their stalling after York. autisticgroupsfairnesswatch.wordpress.com/2016/09/23/nas-openly-washing-hands-of-child-cruelty/


2015: Folks wanting to attend the NAS day conference in Aberdeen on March 27, promoting its new comprehensive autism resource and drop-in service there, may have missed getting places by no fault of their own? But booking forms had been circulated without a return address on them, unclear where to return them to with cheques, and a contact phone number in Aberdeen which was not being answered in the hours given, before it sold out.

How was this prevented from happening that this deficient information and contactability has caused anyone to miss out? Including even among the autism scene circles who were sent promotional invitations? This would not be good, and would affect the event’s legitimacy in all conclusions it comes to, if this does turn out to have happened to anyone who tried to book to attend it. So the word needs sharing if it has happened.
2016: the above mentioned “new” resource service already closing down!


You heard it here: the NAS was caught here saying it will start being responsive to ordinary aspies – which of course it still isn’t.

Archived story from 2004:
This is a Scottish parliament report on adult services. Scroll to and read the end sentence, which shows the National Autistic Society claiming to embrace the democratic involvement of aspies in improving the nature of our scene. This should be argued to include fulfilling the function of the SF site.

NAS offices and officers don’t even respond in writing or email, to ordinary aspies’ issues and concerns that they cynically want to keep the NAS out of, but they are willing to give their backstabbing answers verbally when they meet you. (The NAS is sponsored by Vodafone, btw)

  • The Same As You? noted that there are not enough facilities for assessing and diagnosing ASD for older children and adults in smaller local authority areas and in rural areas. The Scottish Executive’’s ASD Reference Group, Sub-group Diagnosis recently held a professional study day which, amongst many issues, looked at developing national standards for diagnosis of children and adults.

Services
ASD is wrongly perceived by some to be a childhood condition: ASD is a lifelong condition and children with ASD will grow up to be adults with ASD.

Consequently, thousands of children in Scotland will soon need to access adult services. Currently, appropriate services which meet the needs of adults with ASD is patchy. The forthcoming NAS publication A Place In Society highlights the fact that statutory entitlements available to children and young people with ASD ‘disappear in adulthood, with entitlement to services typically dependent on an individual’s presenting needs. There is no equivalent for adults of the raft of current policy initiatives designed to join-up children’’s services’. The Same As You? said that ‘even when there is a diagnosis, services may not be available as no agency sees it as their responsibility to provide them’. A survey found that adults with Asperger Syndrome receive either mental health or learning disability services, but often there is a lack of clarity between these services within social work or between social work and health. Many people on the medium to higher end of the spectrum are often assessed to be ineligible for learning disability services because of their average or above average IQ levels.

Moreover, the recent Scottish Executive review of therapy services found that increased demand for therapy services have come from ‘children with complex health needs and children with autism’. Yet, when it came to adults, the review found that there were no adults with ASD and without an accompanying learning disability waiting to access speech and language therapy services in 2002. The review goes on to say that for this group of adults, ‘there are indications that services for the last client group are poorly defined and there are gaps in service provision’.

49 % of adults with ASD are still living at home with their parents with 8% living independently; only 6 % of adults are in full-time employment with 4 % in part-time employment; almost a third of adults are not involved in any social activities; only 11 % of carers said that the adult they care for had ever used an independent advocate with 54 % of carers being unaware of an independent advocacy organisation in their area which the person they care for could access.

Types of services
Although current provision is patchy, there are examples of specific services provided by statutory agencies and voluntary organisations across Scotland. For example, the adult autism co-ordinator for Lothian Primary Care Trust, Jane Neil-MacLachlan runs the Regional Autistic Spectrum Disorder Consultancy Service for adults with ASD. This is a multi-disciplinary assessment and diagnostic service for adults in the South East Scotland area.

Voluntary sector organisations provide a variety of services for adults such as residential and day services, outreach services, short break/respite, supported employment, social groups and support groups such as the Scottish Society for Autism (SSA), The National Autistic Society (NAS), Moving Intowork, Edinburgh Lothian Asperger Society (ELAS), Parents of ASD Adults (PASDA), People with High Functioning Autism (PHAD), Strathclyde Autistic Society, Grampian Autistic Society and Fife Action on Autism, amongst many others.

The Scottish Executive recently announced funding of £1.5 million to pilot a one-stop-shop of service provision for adults with ASD in the Greater Glasgow and Lothian area. It is envisaged that the projects will be an access point for adults with ASD and their families to get advice, information and support on diagnosis, health issues, training and employment, and much more. Evaluation of the projects will inform the development of services for adults across Scotland.

Complementing this work, the NAS recently launched a consultation on a proposal for a National Autism Plan for Adults. The aim of the proposal is to create a single UK-wide good practice document for providing services for people with ASD aged 14 and upwards to assist policymakers and practitioners in service planning and provision. The proposal state that the recommendations and outputs should be driven by the views and experiences of adults with ASD who will be involved at every stage of its development. In addition, policy makers, professionals and members of the academic and research community from across the UK should be involved in framing NAPA. The proposed themes NAPA will cover are: contact with statutory services (e.g. health, education, social services), employment/meaningful activity, lifelong learning, relationships, impact on carers, and leisure activities. The consultation closed on 1 May 2004.

Complementing this work, the NAS recently launched a consultation on a proposal for a National Autism Plan for adults. the aim of the proposal is to create a single UK-wide good practice document for providing services for people with ASD aged 14 and upwards to assist policymakers and practitioners in service planning and provision. The proposal states that the recommendations and outputs should be driven by the views and experiences of adults with ASD who will be involved at every stage of its development.

12 May 2004

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