Getting worse not better.

I don’t write on here much these days. Generally most things I’ve wanted to say I’ve said. Most messages I wished to convey about neuro diversity have already been sent. Looking back at several years of trying to raise autism awareness my efforts seem even more futile than they did at the time.

I don’t regret trying , something I did in good faith, but as time marches on , I see mainly only evidence that kind responses were at best tokenism. Meanwhile the continued destruction of support services, the manipulation and deceit of politicians of all parties, the abandonment of support from those who claim to be close to us has quietly continued.

No these days I try to simply keep my head down and get on with the task of living with autism and conserve my energy for what is generally a lone struggle.

Andy had a mental health breakdown this year. It’s been awful for him. I don’t want to be accused of moaning again so won’t go into detail but it has meant having to get involved with ’services’ again. No parent would put up with these services were they for neurotypical children’s health.
If you are interested in the most recent chapter of our journey go to careopinion.org.uk and look for Cowal Community Hospital. This was all the more demoralising as it was a service I had delivered Autism Awareness training to a few short years ago. The wall plaque recognising their autism friendly status has disappeared along with any lessons learned it seems. That a person involved was a previous user of the service I ran is another disappointing aspect.

Before I came to realise the futility of seeking change through dialogue and ’democratic processes’ I tried almost every avenue I could think of – contacted MSP’s, MP’s, Ministers, Councillors, Ombudsman, Service Managers, offered to speak about the issues to any person or body who would listen, provided my time and experience willingly and freely, paid for resources out of my own pocket, took a huge petition to the SG , wrote to and in newspapers……… The overarching response was apathy and if any risk to reputation arose, tokenism.

My petition to the Scottish Parliament met so many barriers it was truly exhausting. It took every ounce of my stubborn Aspie being to persevere. When it was heard at the Committee most members made sympathetic but safe responses. I still have a video clip of an SNP MSP from the committee saying dismissively that he had no comment to make. His arrogance and entitlement having outgrown any need for tokenism. The screen shot below reminded me of this and why seeking change through the means open to us is both crushing and exhausting.

Several days after publishing our story most recipients haven’t bothered to even look at it.

I.B.A.

Lesser human beings?

Inadvertently a comment made about my precious boy in a hospital recently was a glimpse of how those with a disability are perceived in Scotland today. The comment was made by a professional and surprisingly it saddened me more than it angered me. A throw away phrase from a person who I am sure is not a bad person seemed to me to reveal an institutional discrimination that has been prominent in our lives looking after Andy. An ingrained, sub conscious judgment about how those who have disabilities are actually perceived and treated. It reflects the fact that many around us are comfortable and or accepting that children with disabilities must endure services and treatment that they would be up in arms about if it affected their children. Similarly many organisations and people are busy denying gender differences while being complicit in ridiculous measures and policies rather than risk being seen as not cool, different from their friends or most importantly losing a well paid job and their ‘status’. But disability? Well it’s just not trending at the moment is it? Besides with the help of allies in tainted parties and charities the administration can spin it. They can put out a shiny new idea dreamt up by civil servants , endorsed by those who see disabilities as an industry that owes them a good living. Paper over the cracks in those life line services with invented language and badges for those who play nice and behave . Welcome to Scotland 2021! 

The comment though , do tell? 

  Well in a state of high anxiety my son smashed his head off a picture in A&E and as a concerned passing paramedic turned to inquire if he was alright a casualty nurse cleared up matters by offering, “it’s all right, he does that!”

IBA

First Minister Ego and the voiceless child.


Politics is an exhausting extra responsibility for people living with disabilities. As a parent and carer of a precious son with disabilities and as a person who can legitimately be considered as having a disability (and never having sought to use it or ever been offered even a token of support)  I feel I have perhaps more right than many to comment.

 My wife and I work around the clock continuously to provide the love , care and support to our son. In the very limited time we have for other activities (usually sleep) it takes a great effort to keep up with the extra practical duties associated with caring and the paperwork and processes of the benefits agency and social work. That’s why occasionally political processes and policy decisions evade us. In recent times policy makers seem to always claim they consulted service users (or whatever the current acceptable terminology of the day is for them). The narrowness and allegiances of those consulted and the methodology used usually stacking the odds in favour of the government/ IJB/ governing bodies’ preferences, the deal often being sealed by a pet organisation’s endorsement.

  The most raw example for us as a family being the failed 10 year Autism Strategy. Don’t worry I’m not going into the gory details again but if you are sufficiently interested you can read more here. 

https://www.scotsman.com/news/opinion/letters/readers-letters-people-autism-being-left-behind-3114219

This policy/ pledge was potentially the most important (and only) hope that my now 14 year old son had for his childhood. How this abject failure is relayed to my son is of course my problem.

Another similar situation has quietly came about regarding disability benefits being devolved from the Tory influenced UK system to the Scottish Parliament- that shining light of fairness and equality.

 Anyone who does not see the problem here has never perhaps filled out forms, went through appeals and attended tribunals to achieve these most basic supports. Carers , parents and those with disabilities had again started to dream of something better than the stress and humiliation the current system causes. You can read more here about how those in receipt of disability benefits have been discreetly failed and misled in this and once again told to wait even more years before change .

https://www.heraldscotland.com/news/17467830.snp-urged-apologise-devolved-benefits-delayed-2024/

https://www.scotsman.com/regions/snp-minister-abandons-entire-devolved-benefit-dwp-88561

The reason for these changes is that apparently the Scottish Government’s infrastructures are not ready and won’t be until 2024. When you consider where money is spent it is clearly just  down to prioritising the issues with the highest political tariff. Cheers for that! We are becoming used to not being a priority while ‘more important’ party business goes on.

Assessment and Diagnosis has always been a pre requisite for accessing support services. In Scotland accessing assessment and diagnosis has always been at best patchy. Under funded and under resourced the waiting lists and speed of the process has caused a drip feed of failures to thousands of children. Clearly to allocate the appropriate support assessments are required but these require to be fair , respectful and thorough. The move endorsed by Team Sturgeon of self identification of disabilities for prospective SNP list candidates sets a very dangerous precedent indeed particularly in the case of neuro diversity as it tends to be less obvious to those ignorant of its forms. Autism as it affects my son for example is a very serious and complex condition that along with a lack of supports has limited his  life and wellbeing considerably. Anyone who has made the effort to spend time with him (not many sadly) would understand immediately the dangers and injustice of flippantly conflating his neuro diversity with  for example dyslexia or less impactful neuro diversity.

 If we could no longer support him the danger of involuntary care being imposed due to ‘learning disabilities’ is very real. 
A browse of the following carer written blogs describe the concerns more eloquently than I have .

https://wordpress.com/read/feeds/106698500/posts/3206348956


The labelling of people is of course a highly controversial topic but fast forwarding to some future, idealistic society before such a utopia is even close risks doing great damage to some of our most vulnerable people

 In my opinion through the GRA issue the SNP is showing a lack of strength and judgment and are terrified of being seen as not being  ‘enlightened or woke’.  In doing so they have ostracised many wise and experienced voices and stifled debate or the likelihood of debate. As a party their power has grown and with it charges of authoritarian tendencies are hard to avoid.

  Anyone who knows me , knows I have been pro independence all my life but how it is achieved is important. The quality of life of those living through the process is also important. 

  As someone said recently North Korea is an independent country….

And so if you currently find the need to shout and fist pump about being part of Team Sturgeon etc. smugly pronouncing your steadfast commitment to ‘social justice’ and being on the ‘right’ side of the recent SNP infighting perhaps it’s time to widen your horizons ?

I.B.A.

Letter in Scotsman.

The Edinburgh based national published my letter regarding the abject failure of the Scottish Government’s Autism Strategy. I just couldn’t let the end of the 10 year fiasco pass unchallenged even though I’m finished with banging my head against the wall of intransigence from those involved. Incredibly at this time of national crisis we are apparently having an election. If you are affected or concerned about the lack of any real autism support and services in Scotland you might want to ask prospective MSP’s to explain what they might do to address this.

https://www.scotsman.com/news/opinion/letters/readers-letters-people-autism-being-left-behind-3114219

To circumvent the paywall here is my transcript .

We need to talk about the failed Scottish Autism Strategy.

“ As we all struggle in the current crisis much of the domestic social policy failure of the past Holyrood years are (conveniently?) off the front page. Many of these issues predate Covid by a distance and as the usual campaign machines from all parties have deemed it appropriate to embark upon a new campaign, then records also require to be reviewed. 

   My now 14 year old severely autistic son , like so many others , is blissfully unaware of the current situation. He was also unaware and not at all culpable for the enforced austerity agenda. He has however suffered from the removal of services and supports and the lack of fit for purpose pathways through his young life to this point and no doubt beyond. His future in a system that will claim he is an adult in little over a year’s time is terrifyingly uncertain and follows the failure of a not fit for purpose children’s system.

  It is now a decade since Michael Matheson et al unveiled their 10 year Scottish Autism Strategy giving hope to families like ours. Targets were set for 2 years, 5 years and 10 years and although the language used was often such that it is difficult to quantify I don’t think anyone involved could claim any level of success surely? Such was the lack of interim success the goals were changed to even more vague outcomes as the policy makers ran out of time. Perhaps the government of the day in 2010 thought they would not still be in power and therefore not accountable at this point? It’s a well used strategy after all. In Argyll the strategy simply ceased to be and then after challenges it was ‘relaunched’ with the blessing of Holyrood by two highly paid professionals whose short lived efforts led to comparisons to a comedy duo from the past! Like Mr. Matheson, they have moved on to new pastures. There has never been any independent or real scrutiny of performance or the use of scarce public funding.

Meaningless vanity projects like the Autism Strategy have simply been an insult to autistic people and families. Always based on providing ‘guidance, guidance and more guidance’ to services that don’t exist is an under handed and duplicitous approach to autistic people. The only response to the pandemic and the huge extra burden this has placed on families living with autism by our Government was to fund yet another ‘advisory service’. Advice is NOT improving the actual statutory services that are supposed to exist – specialist social work, respite, timely diagnostic services, autism specific support etc. Etc.

    As new manifestos and promises are liberally foisted upon us perhaps some accountability for past and current policy should be provided.

Surely it’s only right that there is now some independent scrutiny to the systemic failings of this autism strategy fiasco to at least perhaps stop the same approach and outcome from the next administration? Until this is considered it’s perhaps as difficult for autistic people to move on from as the current administration have found the independence question. I presently trust none of them.”

I.B.A.

Worshiping False Gods.

Like many of us I’m sure, I am really struggling just now in relation to the governance of the UK and Scotland. As I get older I am largely and by choice becoming more isolated and since recognising my own neuro diversity have also become more honest with myself. I won’t win any awards for my diplomacy skills these days but I am more true to myself and the person I hope and think I am. Writing a weekly  blog about my family and autism helped me considerably for many years but I gave it up because 1. it had run it’s course, 2. I realised that trying to change attitudes to autism and disabilities generally is a tiring and frustrating task. 3. As my precious boy became older I no longer felt comfortable with sharing issues and difficulties that he faced. He still faces a huge range of challenges everyday with great courage and goodwill even as policy, professionals and many others have abandoned him. The future is a terrifying prospect for us as parents and after burnout and breakdown I now simply take each day as it comes, appreciate the good bits and do my best with the challenges. Jen and I have learned that generally speaking we are on our own in the majority of the tasks we face and by accepting this we save energy we previously used fighting to change the attitudes, behaviour and policies that so cruelly affect this wonderful boy of ours. Since I have been experiencing a heightened degree of anxiety I have decided to write this stand alone blog. I have largely retreated from social media having experienced recent ostracism for breaking the conformity of the majority of those I know online. I have long since given up trying to change attitudes but simply would like respect for a different point of view. 

  The pandemic has brought many changes and uncertainty for so many but perhaps it is more damaging to those who cannot begin to understand what is going on and why. Like many carers we are walking a tightrope of keeping life as normal as possible while desperately trying to ensure we limit the risk of exposing him to an illness that he would be so ill equipped to deal with. The NHS and those who work in it have been manipulated in an obscene attempt by many of the crooks and charlatans that govern us to cover their inaction and lack of any level of genuine care. The NHS has been systematically rundown for years by the very individuals who now claim to be so protective and appreciative of it. If it is creaking  under the burden of this pandemic, it was certainly not in a particularly strong state before. It has many areas of weakness that could and would be remedied by proper investment and funding. Meeting the needs of people with autism and related neuro diversity is one area of weakness that will never I fear become anyone’s priority.

   Policy on Covid is quite simply in complete chaos and has largely been since day one, or before in relation to ignoring it’s impending arrival. Characterised by massive inconsistencies and U turns in their  haphazard responses our governments have created a situation in which I don’t think the general public has any real idea of what is going on.  Fresh from the brexit shenanigans ordinary people were perhaps primed to be misled and exploited while responding with almost blind trust. Sinister and subliminal programming has led to a new McCarthyism that condemns and ostracises anyone who asks questions or dares to challenge the chaotic policy. The penalty of sheer contempt is shown to anyone who asks questions, fails to abide by fluctuating policy, clap for doctors and nurses or who fail to  ‘protect our NHS and our most vulnerable.’ These mantras are being perpetuated by governments who have previously shown such cruelty and lack of compassion to the very groups they are now using as human shields to protect their privileged positions. In Scotland I think it’s fair to say that in a general sense the Tories are roundly despised. I have long since given up even expecting any level of equality to be provided by their ideology. I, like the current majority believe that the only way that we can escape the cruelty and injustice of Conservatism is through gaining independence. If only Westminster would ever allow us. They won’t. Naively I had previously some degree of faith in the SNP, a party that for me has begun the inevitable decline that follows long terms of power. I don’t believe they will achieve independence anytime soon and they appear to have become infected by the failings of mainstream parties – infighting, cover ups, a drop in policy success and a propensity to lack courage and back only safe bets and the status quo. As I drove around Cowal as we do continuously with our son (the only therapeutic option we have here at the moment) , the radio news broadcast made worrisome commentary about the rising R number across the UK and increasing levels of concern being expressed by the scientific community about the likely outcome of the Christmas Covid amnesty and the inevitable 3rd wave that will follow, I felt so angry. How dare Westminster and Holyrood expose us to this increased risk because they want to keep favour somehow with a confused and deeply divided electorate? What is going on with this most ridiculous of U turns regarding their overused cliché of following  the science? As I observed my boy in his own closed and innocent world blissfully unaware of current events I felt such anger! How dare they treat us like fools? How dare they create these baseless mantras about the NHS and the vulnerable only to contemptuously ignore them ? Ironically our now largely secular population are going along relatively quietly with this as the next false accusation regarding being a mean spirited Scrooge who wants to rob the nation of Christmas is adopted at the behest of those without any faith beyond that of greed and power. The silence in some quarters is deafening.

  I have I think benefitted a little by getting some of this off my chest. Now I better brace my self for the backlash if anyone is still talking to me!

     I.B.A.

What’s the point? Petition Failures.

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As many may remember for 2 years I had been promoting and pursuing  a petition to the Scottish Government about it’s  failing Autism Strategy and seeking improvements in support services to those living with autism . You can see it Here

It has now been through the Parliamentary Petition Committee (PPC) at the Scottish Parliament and largely been dismissed. This outcome is hugely disappointing and disheartening although predictable if I am honest.

As many of you know I have on health grounds been advised to step back from the difficult and stressful work of Inspired by Autism.

I have been trying to find the energy to provide some closing information on the petition for all who are affected and contributed in good faith and hope. I have greatly struggled to do this and find the whole matter soul destroying and damaging on a personal level.

Being still up on Care duty at 4.30 am I have attempted to complete a feedback questionnaire requested by the PPC. It is very draining to rake over this futile process once again and so I have simply decided to share my feedback to the PPC with you. The link above will take you to all the content of the petition and process if you wish to explore it.

Scottish Parliament – Feedback to P.P.C.    

As a petitioner, we would be interested to hear your views on the process and the way in which your petition was dealt with. The questionnaire is an anonymous one, should only take a few minutes to complete and will provide valuable feedback.

We very much appreciate you taking the time to provide us with your views.

The Parliamentary process
1. Did you receive the right amount of help from the clerks throughout the process? [1: yes at all times – 5: not at all]

1 2 3 4 5

2. Were you kept informed throughout the process?
[1: yes, at all times – 5: no, not at all]

1 2 3 4 5

Your expectations

3. Thinking about the process that your petition went through, how fairly do you think your petition was dealt with?

Sadly I feel that the process is very poor, complex to participate in and ultimately a waste of time. It amounted to gesture democracy without any power. From the start I had difficulties getting what was a very strong and important message from the autism community heard. (Check my file!) Through dogged persistence it got to the PPC. At discussion PPC members were very vague, appeared mildly disinterested and incredibly many had little or nothing to say about the issues. This was so very disappointing. Further evidence and responses were sought from L. A. ‘s and some other autism agencies as well as the A.N.S. (The government agency delivering their strategy) Even after a second approach from the PPC an unacceptably low number of L.A.’s responded and those that did were characterised by denial or the usual glossing over using jargon etc. These responses were not subjected to any level of real scrutiny and incredibly were not counter balanced by any attempt to engage with autistic people or those living with autism. The general message summarised by the PPC from L.A.’s input, limited as it was, was one of ‘we have adequate policy in place and that changes are not required ‘.
In an attempt to have the voice of service users heard I had submitted pages of comments from the original Change.org petition. Although eventually a link was provided this crucial input was neither considered or explored. The treatment of the petition by the PPC was incredibly skewed towards the opinions of service providers that were given more prominence and influence than those who use the services. The phrase turkeys don’t vote for Christmas comes to mind sadly. Ultimately the PPC took the easy and predictable route of ‘kicking the can down the road’ by deciding to close the petition while saying they would pass information on to other committees for their information. I don’t expect to hear anything else about these matters.
On a personal level the platitudes offered by the PPC were predictable and patronising. During the process that took going on for 2 years I eventually became unwell through stress, anxiety and burn out caused by being an unpaid carer to a severely autistic child, running an autism support charity in my home town that tried to bridge the many gaps in service, participate in ongoing lobbying for change and hold down a day job in social work. Following medical advice I was strongly urged to withdraw from all but my son’s care, which alone was identified as an enormous task. I informed the PPC of this and gave permission to share this as I felt it illustrated the plight of so many within the autism community. At the PPC this was not made clear although references were made to the ‘petitioner’ being ‘unfortunately unable to continue pursuing the petition aims’. Surely getting the petition to the PPC should have been enough and the issues serious enough to take forward some real measurable action?
All in all this entire process has been a sham and sadly ultimately a waste of my precious time and energy. At every turn the odds are stacked against a petitioner and the ‘scrutiny ‘ of the PPC was based heavily on the rather inaccurate and limited input from those with a responsibility to provide statutory support. It should have not been beyond the scope of the PPC to hear directly from those living with autism in Scotland but this was not facilitated.
4. What did you hope to achieve by submitting your petition?
To draw attention to the many flaws and deficits in autism support services in Scotland. To highlight the complete failure of the Scottish Autism Strategy and to help shape a meaningful solution or way forward.

5. How do you feel about the outcomes?
Disappointed, let down but not particularly surprised. See above.

Overall

6. What do you think were the best things about the petitions system?

Please enter your comments here:
Nothing was particularly good. One or two of the clerks appeared to have more compassion than the PPC itself and attempted to offer support.

7. How would you like to see the system improved?

There requires to be much greater balance to the PPC scrutiny by taking evidence from all parties. A platform should be provided for those who raise issues to actually be heard from directly. The PPC members should be required to participate and comment on issues raised instead of a ‘no comment ‘ option. PPC members should be tasked with taking actual action on specific issues. It felt like these matters, that represent our whole life, were being lazily and half heartedly passed about by MSP’s with no real enthusiasm. The process was a very superficial one and requires tightening and focus, even if this meant hearing fewer. That said this process should be a central part of democracy and resources appropriately.

Any comments that you make may be used anonymously in publications, on the website or any other public format used by the Scottish Parliament. If you would prefer not to have any of your comments reproduced in any way please indicate this clearly by ticking this box. 0

THANK YOU FOR TAKING TIME TO COMPLETE THE QUESTIONNAIRE. Please return to:
Clerk to the Public Petitions Committee, petitions@parliament.scot or by post to: Room T3-40, Scottish Parliament, Edinburgh, EH99 1SP.

 

I.B.A.

The End….

When I set up Inspired by Autism in 2013 I knew I could not provide services and support indefinitely. I had hoped to manage 5 years. I was of course going ahead with an uncertain initiative and had optimistically thought that improvements in support for people living with autism were about to be implemented . The Scottish Autism Strategy launched in 2011 gave us hope. Alas we were misled, let down and duped by what turned out to be nothing more than a political stunt. In addition the uk austerity agenda has decimated public services. In my experience and opinion autism support services in Scotland are in tatters. Our children affected by neuro diversity are being failed and damaged on a large scale and their families are left isolated, confused and even often blamed for the problems their children face.

  Subsequently my role at Inspired by Autism has been dominated by helping those living with autism to pursue basic statutory assessments and supports. The caseload has been relentless and overwhelming at times.

Last year following health problems I scaled back services but had tried to not simply drop those who come to the project needing help.

  Today I regret to inform you that I am no longer able to run Inspired by Autism and have decided to begin the process of winding up the charity permanently. This is based on both professional medical advice and discussions with my family.

I hope and pray that real change and improvements will occur in future but at this time the challenges are beyond the efforts of isolated individuals and for that I am deeply saddened and sorry.

  I.B.A.photo (8)

Autism awareness day.

And so another ‘awareness day’ is here! It’s inception coincides with the year my precious boy was born. I used to push it every year like a good member of the autistic community, but have come to realise that a few balloons and bunting once a year simply does not cut it. Throughout Andy’s childhood services and support have become scarce and are almost impossibly difficult to access. 

So often these type of events are a high profile, noncommittal and cheap option for those who make a living from autism or who require to be seen as doing something. 

 I am sorry if my sentiments on this matter upset the genuine people truly trying to support those with autism but in recent years in my role of supporting and representing autistic people and families the situation for so many has become unacceptable. 

Don’t misunderstand me I work tirelessly to promote autism awareness every day and recognise the significance of promoting awareness. It’s a slow, tiring journey, very often characterised by one step forward, two back. 

 In Argyll our ‘autism strategy ‘ was given life support by the Scottish Government’s Autism Network barely 3 years ago. It had paralleled the picture nationally as a damp squib and fizzled out. Gesture politics at its best- lots of talk and fanfare – no action. Against my better judgement I participated in our relaunched ‘strategy ‘. As a parent I addressed the first meeting with an impassioned plea for real change. New folk got the top jobs on top salaries and made empty promises. Many have now moved on to new pastures.

The bright young government minister at the time wrote to inform me of the changes and impact that was coming. My MSP fell out with me regarding my doubts. Services were cut and specialist social workers were never reinstated. Vague , not fit for purpose policy flooded our lives and actually were obstructing assessments and support allocation.

The new local strategy was chiefly concerned with writing our own ‘strategy ‘. It turned out like the national strategy- some meaningless words on paper. Now lying abandoned. New  ‘Named Persons ‘ were often overloaded and out of their depth. CAHMS has continued as the joke most autism parents know it to be. A new Carers Act that restricts rather than promotes real supports like respite arrived. Many authorities even gave out goody bags with pens, rulers, leaflets and stress relieving squeeze balls to celebrate!

 Quite simply it is wrong and duplicitous of service providers , politicians and organisations to celebrate autism one day a year with tat while doing nothing of any significance to help and if that pisses on your parade, then stop and think about it.

 Here is my offer for autism awareness day in Argyll- I once again extend the offer of a completely free autism awareness session for all the Argyll and Bute councillors. I’ll keep asking. Just let me know when you are ready.

I.B.A.

 

 

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Scotland’s Declaration of Human Rights.

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Now more than perhaps any other time in post war history basic human rights are under threat to people with disability, the elderly, those with poor health and those facing adversity and hardship. Changes arising directly from our flawed democracy have created an almost perfect storm of poverty, inequality, ignorance and greed. To live in a society where both discrimination and hardship are recognised, challenged and minimised is in all our interests now and in an uncertain future. Inspired by Autism is proud to be a signatory of Scotland’s Declaration of Human Rights  and will strive to reflect this in all our work.

I.B.A.