Scottish Strategy for Autism: evaluation

Appendix 3: Additional comments/requests for action received by email not incorporated into the report

Email received on 29 December

This my submission in relation to the review of the Scottish Autism Strategy.

I am contacting you as an individual. I am disappointed at the scope of the review. To have only 9 local authorities involved in the review evidences a subjective bias which limits the scope of an effective review of a national strategy, especially considering some of the local authorities not consulted actually have developed statutory services to provide support - why these services (like the one I work I work in) were not included is concerning. A national review that is not engaging with 23 local authorities is a concern? I have sent a FOIR to the Scottish Government to try and get more context ( https://www.whatdotheyknow.com/request/autism_strategy_review_blake_ste#incoming-1687973 ). To date, I am still waiting on a reply.

Also, the questions put forward in the open survey do not offer the opportunity needed to capture the complexity of the reasons as to why the Scottish Autism Strategy has failed autistic people … hence my approach via this email.

Also, for your review team/the SG, not to consult with the Cross Party Working Group for Autism within the Scottish Parliament again is concerning, hence the FOIR.

I have been very concerned from the narrative from the SG. They have launched the intended policy 'Learning/Intellectual Disability and Autism - Recovery and Transformation Plan', where they have openly said that the plan is to bridge the gap of the closing of the autism strategy and learning disability 'keys to life' policy together in 2023. This will then mean a joint policy of learning disability and autism, this is no legacy from an autism 10 year strategy.

I have tried to influence post autism strategy thinking. I have a petition live at the Scottish Parliament. You can view the petition at: https://www.parliament.scot/GettingInvolved/Petitions/supportingautism. The petition is 'PE01837: Provide clear direction and investment for autism support'. My critique of the Scottish Autism strategy is within the petition. I would ask you to read the comments. I would also ask you to reflect on the fact that there is over 1,000 signatures supporting the lack of influence the autism strategy has had.

Here is a link of the petition being discussed at Holyrood: https://www.scottishparliament.tv/meeting/public-petitions-committee-december-16-2020?clip_start=12:14:26

Here is a short video explaining the petition: https://youtu.be/SQaTozSDTlc

The video gives the wider context of why having autism associated with a learning disability is a dangerous policy move.

I would ask you to reflect that the petition was also lodged on the change.org platform, and it gathered over 1,000 separate signatures and comments about the lack of influence the autism strategy has had. I would ask you to reflect on this as part of your report. The petition can be found at: https://www.change.org/p/social-care-autism-support-time-to-get-it-right

I would be more than willing to discuss any of this with you should you wish.

Yours faithfully

Email received on 16 February

Thanks for the 'visual minutes' arising from the discussions on autism services and Strategy on 27^th January. This is a large topic to cover in the time we had, although it was focussed more on 'what works well and what does not work well' and 'what is required at local and national level to help make these improvements happen'. If we had more time I would have liked to make a few other observations:

• The Scottish Government's Strategy on Autism although well intentioned has clearly failed many autistic individuals and their families as frequently recorded in presentations made to the Scottish Parliament's Cross-Party Group (CPG) on Autism. The failure of any significant progress in supporting autistic individuals over the past 10 years of the Strategy is documented in the CPG's report of October 2020: "The Accountability Gap", which looks in details at how the four strands of the Strategy have impacted on the lives of those with autism. It is a damning report which exposes the lack of project management and accountability in improving services to those who desperately need them. To those families who support autistic individuals this will come as no surprise as they are exhausted by the endless cycle of being let down by local authorities and support services which either do not have the resources or who do not understand the nature of autism. In essence, the weakness of the Strategy is the very fact that it is a strategy, with vague aims and objectives and no long-term resourcing for issues, by their very nature, require long-term support.
• We have seen many commissioned reports which have had no impact on autism services, which should if nothing else, highlight the fact that another report on what autistic people require is not yet another report. In 2001 The Public Health Institute of Scotland (PHIS) published a report "Autistic Spectrum Disorders- Needs Assessment Report" which accurately described in detail the services that people with autism require (https://www.scotphn.net/wp-content/uploads/2015/11/Autistic_Spectrum_Disorders.pdf). Twenty years later and we still seem to be talking about the lack of appropriate services. A copy of the PHIS report should be on the desk of all those policy makers and those commissioning autism services as a reminder of what needs to be in place.
• I mentioned at our workshop the urgent need for more Community Psychiatric Nurses (CPNs) within the local mental health teams. The NHS Lothian's leaflet on Community Mental Health Services in Edinburgh (https://edinburghcarerscouncil.co.uk/sites/default/files/booklets/Community-Mental-Health-Services-Booklet1.pdf) emphasises the importance and services which can be offered by the CPNs. My Locality in Edinburgh does not have a CPN, despite the local GP desperately needing one.
• At the Workshop I asked the specific question "Will Blake Stevenson have access to the reports from the Scottish Government to the Cross Party on Autism as described in the Government's "Outcomes and Priorities 2018-20121". The answer they provided and which you passed on did not answer my question. The answer: "The Scottish Government regularly provides updates to the Cross-Party Group on Autism. Details of these are available in the minutes of meeting which are available at: https://www.parliament.scot/msps/autism.aspx. The CPG meetings are free for all to attend." referred to minutes of meetings, not reports. I have scanned all the minutes on the CPG website and there is nothing which answers the Government's own question "How Will We Know the Scottish Strategy for Autism has Made a Difference?" Or have I missed something?

There are many other outstanding issues to be addressed, many have already been described by the autistic community and their families so I do not need to repeat them here. Government and local authorities cannot pretend they have not been told, we are still waiting answers. I hope you find this helpful.

Kind regards,

Email received on 3 February

Dear X

This may be reflective of some of the failures of the SSA. Consultation only happens with people who are readily available to be consulted. The likes of me are ignored. This is precisely why Scottish Autism are able to claim that they are doing a good job. You don't hear from people like me who are being structurally failed by them.

APOs only exist in areas of existing good practice. This is not an accident, but as I learned the hard way they are unwilling to jeopardise their existing relationships with groups that allow them to access this good practice. In private they will admit that the situation elsewhere is "a shitshow", but are unlikely to say so in public.

With reference to the Accountability Gap report, I have read this document, and it is clearly a means by which the big charities can dodge accountability while foisting all accountability for the failures of the SSA off on to local authorities. Some of the responsibility for the disaster that the SSA has proved to be no doubt lies with local authorities, and I have much more to say about this, but they are certainly not alone.

I have around a thousand words of views that I wrote this morning which I can edit in order to align with your questionaire.

I live in Fife, and might be willing to consider joining one of your focus groups, but fear being shouted down by the usual suspects, by which I mean the big charities and the more vocal parents. The phrase "autistic people and families" is something of a red flag, because families rarely have the same goals as adult autistic people, and at least one of the big charities, Scottish Autism, an organisation I despise just as much as they despise me, openly align themselves with the former and in opposition to people like me (see, for example, their proposals for an Autism Commissioner - in principle an excellent idea, but certainly not as they want to implement it).

With best regards

NB: This person attended the workshop in Fife. He did not submit the additional 1,000 words he mentioned in his second email, although he may have responded to the (anonymous) online survey.

Email received on 4 March

Dear X,

Excuse me expressing myself quite bluntly.

Quote undernoted "This is an opportunity to feed into this evaluation and share your views of the existing strategy, local services and future improvements"

The statement above is a delusional and a fabricated perceptional lie, What existing strategy? What local services ? What improvements... these do not exist in Renfrewshire. See attached letters from the council.

As an autistic adult living in Renfrewshire I report that:

There is no local autism strategy, autsim committee nor autism services (out-with a learning disaiblity wit co mormid autism) in Renfrewshire

How can you review that which does not exist? Renfrewshire council did a page exercise years ago without any input from autistic people and the dropped the idea under the guise of no money. I have many letters from [redacted] and [redacted] stating same. They defuncted the autism committee which would have delivered any change and not once invited any autistic people onto the committee or created any sub committee for autistic people. Autistic people in Renfrewshire have been made voiceless in all manner of events, excluded. How can you have a local autism strategy without the foundation and priorities of autistic people involvement at the core. Some one made the decision in the council not to involve autistic people from the start and it continued that way. Who decided autistic people had no worth ?

So let's stop socially pretending there was ever was a working strategy or autism direct support for the autism community in Renfrewshire. (LD is not the flagship nor category for autism, that is what the council hides behind, which discounts 70% of the autistic community and promotes a false narrative of autism as a learning disability.)

The autism strategy is a total sham, the central government and local authorities have been total disingenuous to the autism community. There should be an enquiry into the 10 years of wasted opportunity and a learning disability IS the same as autism false narrative in Renfrewshire, so unless you have the two magic conditions you do not get any autism support.

Sorry to sound so affective but the true autism community lives in a deliberate grey zone created policy.

How can you evaluate that which has not been operational nor existence in Renfrewshire ? An enquiry of failure would be more necessary and welcome than an academic social professional partnership feedback exercise. Can I request as there is no autism strategy framework operational in Renfrewshire that the event be cancelled until an enquiry is carried out. I feel the feedback event is more smoke and mirrors which the council can use as a tick box exercise event.

It seems a total insult to now ask autistic people at the end of the day for their input. I wish to engage but given my lived experience of disappointment of the local autism strategy plan, which is dead donkey from the start. I really what to just cry as the lack of an effective autism strategy in Renfrewshire has been traumatic and created more isolation of the autism community.

Can you also take my email as an individuals skeleton evidence in your pseudo review as the autism strategy has no operational context in Renfrewshire, and those who say it does are blatant liars !

In disappointment and sadness,

Email received on 21 March

Dear X and any concerned parties,

Could I ask for your support to ask for an external inquiry into the failure of the local autism strategy in Renfrewshire.

As far as I am and others autistic persons are concerned there will be no lessons learnt unless there is an inquiry by say a QC into the failure of the strategy and the risk this has placed upon the life of me and my family and others in the autism community. There has been no betterment in the lives of autistic people in Renfrewshire via a national and local autism strategy which has ignored by nefarious minded do-nothing policy of the Renfrewshire council and the health partnership under the guise of no funding, no hope.

As a result of a failure of their social duty and responsibility, the lack of an enacted local autism framework for the autistic community in Renfrewshire has resulted in the following situations for me personally:

No statutory autism support given, (unless you have a learning disability, which 70% of the Autistic people do not have).

Not treated equally before or by the law

No right of legal representation

No right of appeal

My right to private and family removed because it was decreed I had autism as grounds for their removal.

Autism seen as a mental health disorder automatically by court and as such automatic ruling of incapacity given and all human rights removed.

Sheriff decrees because my son is autistic and am I autistic we have no right to family life. That is totally unconscionable.

Given an incapex (incapacity) ruling without legal or medical test by a discriminatory bias sheriff on a whim.

Absolute, Inherit and human rights removed on the sole premise of being autistic.

Local Authority allows third party others to sign documents and displace me without any legal court interlocutor to do so.

Forced into council social housing not fit for autism purpose nor human habitation resulting in a dance with death and months in hospital with sepsis.

Conclusion: Basically, living In Renfrewshire with Autism sets a precedence that you have no legal rights, right of representation and you are automatically made a ward of state without legal nor medical test and as a ward of state and therefore you have no right of appeal due to pretext of incapacity. This status allows others to rob your estate for personal enrichment as you are made into a non-person by evil construct just for being autistic.

You subsequently have your assets stripped and stolen by third parties with the unlawful assistance of the local authorities. You then have your right of family removed., and you are put into a slum council house and are left to rot and nearly die in a construct of Social detention. A system of being isolated and disenfranchised by third parties without any autistic support to counteract any of this evil situation.

The national and local autism strategy should have provided a protective shield to me as a vulnerable autistic person, but I was given to these wolves and sharks without anyone on my side. If anything the local council and health care partnership assisted in there evil.

I cannot forgive the Renfrewshire council and health partnership for that, as they are complicit by a policy of DO NOTHING!

Until an external inquiry is set up to review the total failure of the autism strategy and the put at risk vulnerable autistic people status in Renfrewshire and how we are put at risk systematically by Renfrewshire Council and that there will be continued high risk to autistic community unless there is an external inquiry to fact gather and close the gap.

Can I call for this external inquiry with immediate effect.

Email 12 March

Hi X,

As the Blake Stevenson team approach the deadline for an inclusive and comprehensive evaluation and consultation process for the 10 year-long Scottish Strategy for Autism, I would wish to reiterate one of my concerns that when I asked if a collective lead officers feedback event could be arranged on 7th January 2021, I was informed by X that after consulting with the Scottish Government this "could not be accommodated" (email reply dated 13th January 2021 refers)

This came as a particular surprise as a written ministerial reply (attached) clearly indicated that any local authority wishing to take part in the review process "should contact Blake Stevenson directly"…

I believe that the omission of a Lead Officer consultation is a significant diminishment in the veracity and inclusiveness of the review process and would be grateful if this matter to be noted when your final report is published in May 2021