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.

The cost of everything and value of nothing?

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In last year’s Scottish Government’s Autism micro segmentation study researchers attempted to estimate the economic costs of autism. While the complexity of such a question, for me at least, makes it impossible to address satisfactorily, as a parent of an autistic child a more basic question comes to mind. Is it even ethical to consider neuro diversity in this manner? Autism is a part of being human, a legitimate way of being. Should the debate be so blatantly reduced to pounds , shillings and pence? Granted the ‘happiness ‘ of autistic people gets a passing mention but the main thrust, whether unwittingly or not, is the projected costs of support and resources based on genetic characteristics of a particular group of people. If for example we applied cost differentials based on the cognitive and intellectual capacity of the general population eyebrows would surely be raised. Why is it different for those who are autistic? It is a dangerous route to go down.

The study carried out a meta analysis of relevant global research and used this in conjunction with the specific situation in Scotland to arrive at suggestions for future savings. I’m sure I probably lack the academic prowess to fully understand but I would think it’s fair to say that the findings could be considered general and broad in nature.     One weakness must surely have been the limitations in the size of the sample of people living with autism who contributed. The total sample was n = 950,   (a further 654 responses were discarded largely for not completing all the questions apparently.) In Scotland the number of people with autism is approximately 56,000.

  If we conservatively considered that for every person living with autism another 2 people are affected by their autism, then we could suggest a figure of 168,000 as the number of people living with autism in Scotland . The sample taken as a percentage of that autism population then is just under .6 %

I am not entirely sure if online responses from those who found the time and space to participate have any wider representative validity but it is limited I would think.

Incidentally this is a similar figure to that used for the ANS  ‘consultation ‘ that informed the final phase of the S.G.’s Autism Strategy. ( approx 1200 responses from online responses and at staged events, gives a figure of just .7 % ) It is just wrong to give the impression that this is anything other than the views of a very small part of the autism community.

 While I am no statistician I think that it must be clear that any conclusions based on such small samples must have limitations to their validity.

 Clearly there is a major problem with engagement between the government and the autism population in Scotland. Why is this? What efforts are being made to address this problem? While the methodology in the micro segmentation study presumably meets the rules of validity for clinical, empirical, scientific research, why can’t the views of more people actually living with autism be included or even heard?

   The numbers for individuals with an ASC diagnosis who have contributed to this research are just as poor sadly. Of the 950 responses only 114 were from autistic people themselves ( approx 12%)

  Of the 55,939 autistic people in Scotland this represents only .2 % 

  This would suggest that those with an autism diagnosis are even less inclined to contribute than the  wider group of people considered to be living with autism. Perhaps this is not surprising but should we not be engaging more fully with the group of individuals most directly affected by autism policy?

   Why can’t government departments with all their resources and research associates come up with better ways of facilitating a debate with the autism community in Scotland? Do they actually not care and are simply concerned with putting a veneer on the matter?

   Many, myself included, have experienced being ostracised and or discredited when attempting to enter the national debate about autism services in Scotland or when seeking to bring about improvements locally. The debate is owned and controlled by politicians and those on their payroll – professionals who are compliant with flawed policy while receiving a substantial slice of the budget, services providers that are propped up by government grants and those taken in by the fancy terminology but who fail to grasp the bigger picture.

  My precious boy is now 12 and has quite literally got no voice in these matters that will affect him so much, particularly in later life. Until real engagement is facilitated with the autism community it will remain essential to ask questions on his behalf.

As a footnote the comments in the study’s appendix are very interesting.

I.B.A.

The struggle to be heard.

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Tomorrow the Petitions Committee at the Scottish Parliament will consider my petition that called for real and meaningful change for those living with autism in Scotland.

The aim of the petition was to challenge the notion that the national autism strategy had delivered significant improvements. You can watch the debate here from 9.30am on 20.12.18

I have very little faith in what passes for democracy at both Holyrood and Westminster and to get the petition this far has been very difficult. Very often in an advocacy role one is required to put their head above the parapet and face the combined attack of those in power.
Sadly this process has been little different and I have little hope or chance of having influence on these policies I fear.
The story starts around 15 months ago with a response to the Scottish Government’s failing autism strategy. We were approximately 7 years into a costly 10 year fiasco and the SG had decided to change the previously set goals to even more vague ‘outcomes ‘. You can see them here. This type of stunt is all to common in politics sadly and effectively muddies the water so much that no clear analysis can be made as to the success of an initiative. You will be familiar with how it works – all parties can claim some capital apart from the recipients of the service, who inevitably find themselves exactly where they were previously.
I started a petition to gather support for some clear, simple and meaningful goals that might be set for the SG’s autism strategy. Not surprisingly the idea played well with many in the autism community and the petition quickly gathered in excess of 2k signatures. The comments, around 200 of them painted a picture of autism services in Scotland that was much closer to reality.
I closed the petition hosted by change.org and forwarded it to the SG in the hope it might be acknowledged in the context of the ‘consultation’ that they were running on their new outcomes.
Their online ‘consultation ‘ however was not interested in changing the outcomes- oh no. They were about how they would implement what they had decided upon. A very sinister and all to common tactic in ‘policy development ‘ these days involves what politicians like to call ‘consultation.’ This allows them to start final policy documents with the phrase ‘you told us’…… On closer scrutiny though these ‘consultations’ typically involve very small numbers and very tightly controlled events.
Typically they will be invitation only and are arranged around a very inflexible agenda. The SG consultation on these final strategy outcomes involved an online questionnaire and four events that were only concerned with how their outcomes were taken forward. Discussion out with this was not permitted. How transparent the online consultation results were I am not sure. A combined number of just over 1000 contributions were claimed although how many were the same folk contributing twice is not clear. In Scotland today a conservative estimate of the number of people with autism is in excess of 50,000. If we estimate conservatively that 2 additional people will be affected by a loved ones autism to some degree, then we can assume some 150,000 people have a stake in these matters. Yet the SG pass off their sample as if it were the voice of the autism community. Link Sadly it’s a common tactic nowadays.
My petition was submitted approximately 1 year ago. The consultation ended in the spring ‘ratifying ‘ the SG’s outcomes for the strategies final phase. Still I heard nothing and then in July I received a reply! After some digging I was informed by civil servants at the Parliament that the sheer volume of petitions meant there was a delay in responding. I was assured they were impartial but am honestly not sure. A helpful petition clerk helped me reframe the petition slightly to reflect the decisions made while my original petition gathered dust. On the Scottish Parliament website the petition performed less well achieving approximately half as many signatures as previously. Still it was supported by in excess of 1k and the comments are interesting, again pointing at a much less satisfactory view of autism services.
After a short initial mention  at the petition committee of 27.9.18 (approx 1.35 to 1.40) at which only the SNP member declined to comment, it is to be discussed again tomorrow.

The petition  has had additional information added in the form of short statements from the 11 local authorities that bothered to comment as well as the SG, ANS and some autism charities. My response submitted on Sunday never made an appearance until last night and that was after another fight with a clerk. It was the volume of work again that was the problem apparently!
My response is not presently on the papers for tomorrow’s committee and has not been included in the rather loaded summaries of submissions written by a petition clerk. Again this is disappointing and the summary lacks balance in my opinion.
As an unpaid autism carer it’s been very difficult to find the time and space to get this far and I have had to submit documents that given more time and resources might have been stronger but the playing field is never even it seems.

I.B.A.

My response to Petition input.

0B2A751E-C6C9-46F4-8D80-F61A37ED49CCFeedback on petition  PE01704  TO BE DISCUSSED AT COMMITTEE ON THURSDAY 20TH DEC.

As the author of this petition and as the parent of a child with autism who has very high support needs and is non verbal I was very disheartened at the poor response from other stake holders.

     E.g. Only 12 of 32 local authorities bothered responding to the Scottish Parliament petitions committee request to comment on the petition seeking real and meaningful change and improvement in the support and services for autistic people in Scotland. 

  In addition many of the responses were short , vague and used inconsistent terminology. 

  Great disparity across Scotland in the nature and quality of autism support and services is reflected in the approximately one third of authorities that bothered to reply to the petition. Feedback across the wider autism community in Scotland would appear to indicate that this is the nature of autism support nationally. (1. Link to gathered feedback documents https://www.change.org/p/scottish-goverment-let-s-make-real-change-happen-for-autistic-people-and-families-in-scotland?recruiter=45827484&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition

  This disparity is clearly at odds with the goals of ensuring all autistic people in Scotland receive the support and services they need. This is the main premise on which I would appeal for autism specific legislation.

Autism is of course a wide ranging and complex life long condition. How it impacts on individual’s lives varies widely. It must be acknowledged that simply because an autistic person is cognitively able to lead an independent life they may still have great challenges to face in everyday life. e.g. social difficulties at work, misinterpretation of behaviours, secondary mental health issues like anxiety 

  Autism in the context of the petition should be taken as wide ranging and encompass the range of co existing conditions identified in the Autism plus model (2.  Autism plus versus autism pure. – NCBIhttps://www.ncbi.nlm.nih.gov › pubmed.) I was making the assumption that this would be clear to service providers and policy makers as it is accepted by professionals working in the area. In this context I.e. a recognition of the wide autistic spectrum and autism plus, the petitions request that within education there should be specific autism support is valid and is not simply promoting improvements for a narrow group over other types of disabilities. (As some responses have sought to suggest)

Some replies have sought to suggest that the petition is seeking to impose assessments and services on autistic people, where this is not sought. This is not the case and the caveat of the agreement of the autistic person is assumed . I felt this would be clear but the wording of the petition should have been more explicit in this regard perhaps.

Several contributors have acknowledged that there require to be real measurements of the impact of the Scottish Autism strategy.

NAS Scotland agrees as to the importance of early diagnosis for accessing supports and calls for the Scottish Government to follow the English Government in publishing waiting times for autism diagnosis.

With regard to statutory assessments the response correctly points to the relevant assessments provision under older legislation that remains on our statute eg Children Scotland Act (1995) Sections 22,23 and Community Care Act (1990) for adult assessments but the fact is that these provisions are much less used nowadays. For children the use of the GIRFEC framework(C&YP Act 2014)  has overshadowed the earlier provision but does not always lead to the statutory assessment of children with disabilities and affected others. This assessment is essential for accessing supports like respite, direct payments and adaptations to a home. Similarly the statutory provision for a meaningful assessment of carer needs has tended to rarely take place or is being replaced by the provision under the new Carers Act Scotland that allows the authority discretion as to what the criteria for support is. This has been a subtle but highly significant change in supporting carers and families and has in my professional experience produced a reduction in support. The further barriers to statutory assessments from the priority system used by many local authorities has led to assessment and accessing supports only being a right IF the authority deems it a priority. While I acknowledge that this is largely to do with a lack of resources it is also sadly at times due to poor understanding of the complexities of an individual’s autism. In Cowal in Argyll I have many cases where this is the situation. This could be due to the needs being less obvious for a young adult with AS, and can lead to isolation, exploitation and mental health difficulties for the person. Another issue is the use of generic social workers and locum social workers who have no experience or understanding of autism. In many cases this means there is little or no engagement with the person or family unless there is substantial support needs around a pronounced learning disability for example. This is another reason in my opinion of why specific legislation is needed for autism because there are so many difficulties and barriers around the understanding of and engagement with autistic people. Many of the families I have supported at Inspired by Autism ( 3.  https://inspiredbyautism.org/ ) have no idea that under the Children’s Scotland Act (1995) there is a statutory right to assessment for a child with disabilities and affected others e.g. siblings. Similarly with the Carers assessment under the same act that specifically looks at the affect on parents, families and carers and what support might be appropriate. In many cases families have no awareness about respite options and with an autistic child if such input is not introduced early and in a carefully planned fashion the chances of successful engagement is reduced. Named Person’s particularly in school settings have also often got little awareness of the availability of supports like respite or direct payments for example. In many cases this type of support is essential for the wellbeing and healthy functioning of families. The GIRFEC framework has in my opinion somewhat overemphasised concepts and ticking of boxes e.g. Shannari wheel, my life triangle, rather than addressing the acute needs of autistic children.

  These problems of lack of support and engagement that should have been addressed through the statutory assessments under sections 22 and 23 of the Children’s Scotland Act 1995 , contribute to the difficulties when autistic people become young adults. Having never had proper or adequate assessment of their needs and without prior engagement and knowledge of possible supports , while often facing the difficulties of looking for work or adjusting to student life or independence, this group can be very vulnerable indeed. The provision of transitioning guidelines by ANS is simply not adequate to address these issues and it is my strong feeling that a statutory option of support up to the age of 25 for autistic young people should be on offer , if they wish to pursue this help.

There were rather defensive responses from some local authorities. A common theme in responses is references to assessment processes with promising titles but that are vague and unclear in what they actually mean or entail or indeed indication of their effectiveness e.g. Children in North Ayrshire with Autism do have their needs assessed through our staged intervention and Child’s Plan process. This process acknowledges their autism and identifies the effect it has on their lives. A number of specific targets based on wellbeing are set in response to the child’s individual needs and support is allocated from a core budget to support them.

In the context of adult services, North Ayrshire is an active partner in the delivery of a broad ranging pan-Ayrshire Autism strategy aimed at encouraging appropriate access to services for people with autism, including delivery of training at very various levels to complement relevant expertise where it already exists, and exploring means of addressing recognised issues in relation to assessment and diagnosis.

Essentially, Resources are allocated using a ‘Prioritisation of Need Framework’. In common with many other Partnership’s across Scotland, Argyll and Bute HSCP have put in place a prioritisation framework to guide the allocation of resources to those in the greatest need. The need for such a framework is a direct response to the increasing gap between assessed need and available resources. (Argyll & Bute Council)

It must be acknowledged that views from service providers have a bias towards their own positive portrayal.

With regard to the petition call ‘that young adults with autism will have a statutory right to specialist support from their local authority up to the age of 25,’ it is disappointing that several authorities e.g. South Lanark interpreted this as possibly forcing supports on autistic people, who did not want this. This interpretation was disingenuous and defensive in nature and I felt it was clear that this support would be a right IF the person wished to access it or if they lacked cognitive capacity, as it is with regards to care leavers. The reference to corporate parenting is very far removed from the intention and spirit of the petition.

Dundee recognises that Support should be available through out adulthood and this the petitioner would agree with. The ‘up to age of 25 years’ was aimed at ensuring the transition to adulthood was adequately supported but was not at the expense of ongoing help through out adult life.

 There is and has been a lack of a voice from service users and autistic people , with only limited and very controlled attempts to do so. The samples referred to in the SG and ANS responses are based on very limited groups and those who have a history of involvement. However I would suggest that for many (the majority of those living with autism) many barriers both structural and practical prevent their involvement. E.g in Argyll the Autism Strategy and ANS events were scheduled in venues and at times that prohibited parents attending and required access to transport and child care, neither of which was available. Unlike the professionals attending no travelling expenses were available to autistic people and their families and carers. These events were always top heavy with professionals. The events to inform the final phase of the SG’s Strategy presented similar problems and were in limited capacity venues unfortunately. The events themselves were highly structured and based around the new goals, failing to ask if these were the most useful and relevant goals. Although the SG presented this as based on responses from across the autism community it really has to be acknowledged that just over 600 responses were received from the online consultation and around the same number attended the very structured consultation events. They conclude that the sample was therefore greater than 1000 but do not acknowledge that many of the same people were likely to have participated in both. In short it is fair to assume that the decisions about the last phase of their strategy was based on a very small percentage of those living with autism in Scotland and the methodology used certainly never maximised the participation of those living with autism. For many the amended goals were simply not meaningful in a sense that they could promote real, measurable and desperately needed improvements.

That concerted efforts have not been made to reach out to the wider community must be remembered when assessing the validity of both SG and ANS reported findings.

 Anecdotal evidence gathered in the comments (4 http://www.parliament.scot/GettingInvolved/Petitions/PE01704 )and in similar petitions suggest a very high level of dissatisfaction with the current state of autism support services in Scotland today. It remains astonishing that so few resources and efforts have been aimed at establishing the true picture in Scotland.

Lack of timescales for delivery of autism services are acknowledged.

Teaching unions appear very supportive of development and training opportunities for staff in schools.

  The EIS submission understandably focussed on the issue of assessment for classroom support, training and registration for ASL staff.

  They rightly expressed concerns over the nature and availability of assessment and highlighted the shortage of educational psychologists employed across our authorities, as well as a lack of courses to increase numbers. This is clearly a huge problem and must contribute greatly to the under assessment and subsequent lack of support so many autistic children require to endure in mainstream settings.

  The EIS submission also makes very valid points about the demands on and implications of the policy of mainstreaming. E.g. this cannot be presumed as appropriate for all autistic children

 Charitable organisations with specific remit to autism seem more supportive of suggestions in the petition .

Need for a specific autism Act is being questioned due to the raft of related legislation- Equalities Act, ASL Education Act , Social Work Scotland Act and yet these acts allow a wide disparity in how statutory obligations are interpreted and met by different service providers.

East Ayrshire response largely supportive on all points.

Glasgow Council was supportive of an Autism Act

 South Lanark information around diagnosis is rather unclear. They talk about the  time taken to be seen and that the assessment process is an ongoing one. 

If a child is for example in early primary school and no diagnosis can be arrived at conclusively for a number of years this prohibits accessing supports and to suggest otherwise is wrong in my opinion. E.g. DLA, respite, classroom support.

This authority appear to support the need for specific autism legislation.

ANS reply I found very interesting. That it has differentiated (finally!) between underpinning support in the form of guidance that they and the SG autism strategy are largely concerned with, and my call for improvements in direct services is a step forward, albeit late in the day. The practice of not differentiating clearly about ‘underpinning supports’ like local strategies, guidelines and advice versus (the reduction of) ‘direct services ‘ has in my opinion been highly misleading and has represented bad faith as well as considerable hardship and frustration for those living and working with autism.

 I was personally involved in the ‘relaunched ‘ local autism strategy in Argyll, around the 5 year stage of the 10 year strategy, after the initial one had failed and disappeared. ANS supported this process. I was determined to press for improvements in direct services but the process sadly only produced more ‘words on paper’ and the further promotion of meaningless jargon. This relaunch in Argyll has once again failed and the forum has simply fizzled out and no longer meet.

Different Perspectives; Petition Update.

FB17BA40-4549-4770-99F4-6560BB0598E7As many of you will be aware I had petitioned the Scottish Government earlier this year seeking real improvements for people living with autism. You can see the petition  here. The next stage in the process is that the petition committee seek further information via submissions by the various parties involved. This apparently involved writing to local authorities, of which there is 32 I think. Below are the submissions received up to the cut off date. It appears around 2/3’s of our (your) local authorities never deemed the petition worthy of a reply. I thought I’d make the submissions available for public comment ahead of submitting my response to these. Something that really niggles is that there is rarely unfettered opportunity for autistic people and families to comment outwith the narrow and controlled channels of invitation only events and carers groups who typically are not representative of any carers I know. One general observation I would make is that autism policy in Scotland in currently a real mess with huge variations across different areas. There is also very conflicting, confusing and inconsistent application of current legislation in this area. I would be most interested in any feedback.

 

 

 

I.B.A.

A window on autism.

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Andy is growing into a young man. He is almost as big as me and soon will tower over me. Although he is learning to cope with the world around him a little better at times, he still exhibits many characteristics associated with his autism. He always will. 

 Severe hyperactivity and sensory processing differences can be more noticeable when they are affecting a grown up person. Repetitive behaviours and the need for unusual routines can be less accepted when a person is bigger and louder.

Andy will require a lifetime of support from his family and carers. He will also require a lifetime of understanding and acceptance from his community.

I.B.A.