The National Autistic Taskforce Forum: High Quality and Effective – The Future of Autism Care was held virtually on 23rd September 2021. Videos were recorded of the introductions, plenaries and wrap up, which have been published alongside a series of short videos (approx. 5 mins each) that were created in advance of the Forum by a series of guests, each asked to introduce one of the recommendations of the NAT Guide.
This page provides transcripts of each of those videos, as an alternative for those who find subtitles on the videos themselves less accessible. The full NAT Forum 2021 page with videos and written summaries of the workshop discussions can be found here.
Index of video transcripts
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- Introduction: Dr Ian Ragan; Intro to NAT forum and remembrance
- Plenary: Dr Sara Ryan; Research, practice, and impropriety
- Plenary: Dr Yo Dunn; The independent guide to quality care for autistic people
- NAT Guide recommendations:
- Gillian Loomes-Quinn; Respect and promote autonomy
- Ann Harber and Katie Nurse; Support communication effectively throughout the lifespan
- Liz Howard; Provide care which is autistic person-centred
- Jo Minchin; Tackle environmental and other stressors
- Dr Mary Doherty; Remove barriers to access
- Venessa Bobb; Fight stigma and discrimination
- Tomas Clayton; Recognise behaviour as distress
- Dame Christine Lenehan; Ensure better transitions throughout the lifespan
- Rachel Moody; Ensure ongoing, practical, autism-specific staff training
- Martijn Dekker; Accept difference and support positive autistic identity
- Wrap Up: Dr Ian Ragan; Summary of the workshop discussions
Introduction: Dr Ian Ragan; Intro to NAT forum and remembrance
I don’t think I need to introduce myself, you’ve been receiving emails from me from a very long time, and all I need to say, I think, is that I’m the National Autistic Taskforce’s token neurotypical.
Many of you will be aware of how NAT started and how it arose from the National Autism Project. Both of these activities being funded by Dame Steve Shirley and the Shirley Foundation.
Before we started, I wanted to pay tribute to two key figures in this story who are sadly no longer with us, and these are Elizabeth Valance and Dinah Murray.
Lady Elizabeth Valance was a distinguished academic and then had a long career in the public sector with a particular interest in mental health and children’s welfare. And she became chair of the National Autism Project strategy board.
One of our first jobs was to approach Dinah Murray to join the board.
I’m afraid we were a bit tokenistic in those days and thought we’d just have one autistic person on the board. We learned our lessons later on.
Elizabeth invited Dinah Murray to meet us in the crowded and claustrophobic, noisy subterranean cafe in the Royal Society of Arts, and when Dinah was fighting her way across the room, Elizabeth leapt towards her, grasped her by both hands, and hugged her!
So, as you can imagine Elizabeth was not well versed in autistic behaviours at that time.
Dinah withstood this neurotypical assault very bravely and agreed to join the National Autism Project but on condition that she could create an autistic advisory panel.
She and her colleagues, many of whom then became part of NAT, became what was termed the ‘productive irritants’ to the National Autism Project. (A term coined by Professor Martin Knapp of the London School of Economics.)
And it was thanks to Dinah that NAP, the National Autism Project, then evolved into the National Autistic Taskforce. It was she who gained the necessary financial support from the Shirley Foundation.
So, both Elizabeth and Dinah, they were good friends and colleagues to me, and they’ll be very sadly missed.
Plenary: Dr Sara Ryan; Research, practice, and impropriety
I’m going to introduce our first plenary speaker Dr Sara Ryan.
Sara is the Professor of Social Care at Manchester Metropolitan University, and her research focuses on learning disability and autism.
She told me that before 2013 she was a quiet campaigner, but since the tragic death of her son Connor Sparrowhawk in 2013, she’s been a much more active campaigner.
She’ll be talking about research, practice, and impropriety, and The Independent Guide to Quality Care for Autistic People.
So, Sara I hope you’re there, and I’ll pass over to you.
Dr Sara Ryan:
I feel very honoured to be invited to speak here.
So I’m just going to speak for about 15 minutes and I’ve got no slides. I’m going to read a script, which is unusual for me, but quite liberating.
So, on August 25th, UK headline news was made around the start of a study called the Spectrum 10k by led Simon Baron-Cohen.
He said on BBC News there was an urgent need to better understand autism, while the Cambridge University press release quoted him as stating: that Spectrum 10k hopes to answer questions, such as why some autistic people have epilepsy, or poor mental health outcomes, and others do not.
The study design didn’t make clear how collecting these samples would achieve this, or indeed provide other information or reassurance around data protection and storage, the potential commercialisation of the data collected, and what the actual aims of the project were.
There was a celebratory feel to the launch of this project, on the BBC News and other news channels, and its potential. Leaving the British public to again be fed the line that the answer to sorting this problem called ‘autism’ lay in genetic research.
‘It’s not about eugenics’ claim the Spectrum 10k team, with mock horror.
‘Oh yes, it is!’ replied the autistic community and their allies en masse.
Social media went into overdrive, and with some digging, research, cutting commentary, and good media coverage, the project has since been halted, as Baron-Cohen and team apparently conduct retrospective co-design work with autistic people.
There are two key points here for me.
First, the power, dignity, and collective strength of the responses generated by the autistic community and its allies.
And second, the impropriety and ignorance of the research team led by an internationally renowned professor of autism.
As a researcher who works with autistic people and people with learning disabilities, I want to focus on the latter point here in discussing the new National Autistic Taskforce guide. While acknowledging, with respect and awe, the work that went into the campaign to halt the Spectrum 10k project.
On Tuesday, the findings of an Australian-based randomised controlled trial investigating the effect of changing the way parents respond to their babies who are showing early signs of being autistic, was published.
The findings again made headline news on the BBC and various mainstream newspapers as authors claimed it did make a difference.
Once again there was no engagement by presenters, journalists, or commentators with the study design, reliability or robustness.
Both these projects are underpinned by assumptions and beliefs which are in direct contradiction to the key elements of quality care outlined in the Taskforce guide.
The National Autistic Taskforce, run and managed by autistic people, was established three years ago – as Ian’s just touched upon – building on the earlier work of the National Autistic Project.
This work remains essential because of a lack of change in autistic people’s lives and well-being, despite government legislation policy and guidance.
The guide is a comprehensive, clear, well signposted, and evidenced map, to help care providers, support workers, commissioners, local authorities, and regulators learn to better understand, work with, and support autistic people to lead good lives.
It offers key points providers can undertake, followed by an unpacking of the evidence, and suggestions for improving practice.
Now I want to step back a bit for a moment to childhood.
The idea that autism can be headed off early with some enhanced parenting skills generates a strong message that autism is something to be avoided.
As a parent with no previous experience of autism, I know how persuasive and seductive these difference erasing narratives can be.
25 years on from when I was holding a cheeky tot with the chubbiest cheeks, and a joyful delight in lining up diecast busses, it is shocking that research continues to be underpinned by these eugenic-stained narratives.
This quest to erase, rather than better understand, is a form of soft eugenics, and the ease with which the Australian study was headlined by the BBC and other popular media outlets, suggests we are not much further forward in terms of accepting and celebrating difference, and supporting positive autistic identity – a key element in the guide.
The forensic lens of the pre- and early diagnostic processes often create concern, sadness and distress for parents at a time in which babies and young children should be receiving the most loving and supporting parenting, regardless of whether or not they are autistic.
I felt anger and sadness at the number of years it took me to understand that there was nothing wrong with Connor, my son, and how that time could have been so much better lived and used if we had been supported to understand him better.
We needed coaxing and coaching to recognise the tyranny of normality, and ableism in a maelstrom of paper measurements, metrics and apparent healthcare.
Riffing off Damian Milton’s Double Empathy Problem, I think autistic babies and children can too often experience a bewildering and incomprehensible ‘Double Whammy Problem’. With their main caregivers – the people who love them off the planet – misunderstanding them and falling down too many rabbit holes of cure, treatment, and normality.
[She becomes emotional and her voice falters]
Sorry.
Studies like Whitehall et. al. are part of the academic and wider machine, sustaining views that should have been long discounted and discredited.
The role of academics and the assumptions that underpin our research, is too often a serious issue here.
It’s not just academics of course, as we’ve seen from the examples discussed above. The funding bodies who read these applications, the peer reviewers who are offering academic expertise in judging, and reviewing these proposals to see if they sound worthwhile, important and well designed.
Ethics committees – again it’s incomprehensible to me, that the Spectrum 10k study passed an ethics committee.
Having been on the sharp end of ethics committee’s comments in the past, for minor indiscretions, compared to the study design of Simon Baron-Cohen’s project.
All these old bodies and pieces in the academic jigsaw work to the same deficit model. Lacking the critical engagement and knowledge, apparently needed to ask key questions of research proposals or ethics applications in this area.
This is clearly deeply problematic.
There have been attempts to identify research priorities for autistic people. Most recently by Roche et. al. who systematically reviewed seven articles focusing on this. The authors note the importance of research that results in changing people’s lives and research across the life course. The importance of a diverse set of autistic people involved in priority setting was seen as imperative.
Without this common-sense involvement and collaboration, research will continue to miss the point in dangerous ways.
(And writing this the other evening my brain was shouting, “Stop fannying around in petri dishes while people’s lives are shit!”)
Another key element in the taskforce guide is autonomy, and it talks about proxy decision makers, who are not usually autistic themselves, making decisions in terms of what autistic people lack.
This again resonates within the research in this field.
Researchers make decisions about what research is important, what questions to ask. And run with this, acting as proxy research decision makers for people they don’t know, or understand, too often.
Researchers also, too often don’t know what a good autistic life is like, or what values are important to particular autistic people.
This proxy research decision making extends beyond the research person to their family members, as we see paper after paper focusing on the impact of having an autistic sibling, for example, on people’s lives.
The burden, the accompanying bullying, or somehow missing out on an aspect of childhood, because of their unruly (in a positive way) sister, brother, or sibling.
A nod here to Pavlopoulou and Dimitriou’s wonderful 2019 sibling study, ‘I don’t live with autism; I live with my sister’. When I was doing some research for a recent book I published, I had to go through pages of Google search to find an article that didn’t have ‘sibling burden impact’ in the title.
The research is too often framed negatively.
And again, if your research is framed with a negative question, and you go out and you speak to people, or you do a survey, then you are going to find negative. You’re going to rootle it out somehow.
But by doing that, you’re erasing the positive, and the joy, and the brilliance that people bring to family lives, like other family members.
A further related key point researchers could take from the Taskforce guide is around how a good service for autistic people recognises and respects autistic norms and perspectives, and does not assume that what is normal for non-autistic people is necessarily best for autistic people.
And, I can remember, once I was enlightened with Connor, and I used to write in my blog, ‘My daft life’, about our funny family life.
I used to call Connor ‘my unlikely ethnographer’, because he offered such an insight
into what we were doing and why we were doing it. He offered so many of the richest reflections about everyday life that the rest of us were completely oblivious to, and we couldn’t see it.
And I think that that, too often, researchers are going in and stamping over that ethnographic expertise, or that that insight and crushing it with their own questions and ableist assumptions.
So, this again is a key failing for researchers, even those social scientists apparently steeped in reflexivity.
The layers of assumptions and judgments that pervade much research in this area, or many areas of research focusing on marginalised groups more widely, need addressing.
This will only happen when non-autistic researchers start to engage properly with autistic people as active and democratically positioned collaborators with flexible research methods, time and individual attention paid to incorporate different communication styles.
Now the final point I want to make about the non-autistic researcher’s engagement with autistic people, either as research collaborators co-researchers or research participants, is the duty of care, which is very clear in the Taskforce guide in relation to support.
I quote from the guide:
“The very nature of autism leaves people exposed to a much higher risk of stress from external demands and a more frequent and severe experience of it.”
Our research endeavours – whether underpinned by a genuine attempt to generate change in people’s lives, to build our careers and climb up the academic ladder, or simply to do a paid job within working hours – should never ever generate distress in the people our research is about.
While my initial concerns about the Spectrum 10k study stemmed from a poor research designer rationale, and a baffling ethics committee approval. It was the obvious and intense distress it was causing autistic people, including those who are actively trying to stop the project, that is unacceptable.
I think, too often, researchers are so disconnected from the people they are researching – which is evidenced in the questions chosen, the methods used, the approach, the framing and the outputs – that they are too far to realise or recognise that they may be generating distress in people’s lives.
I think, again for me, this comes back to ethics committees and, understanding– better understanding people, which needs to happen, through hanging out with people, and working with people, rather than working on them.
So, in conclusion, I think the guide is a compelling, comprehensive, clear and powerful resource for those who provide care and work with autistic people and their families.
I found it an absorbing read because it was so comprehensive, and it seemed to cover everything, and so much more than I would expect to be in there.
And I found it very gently challenging, of a lot of what is taken for granted,
And so I think the potential for the guide to have impact – If people receive it with the intention it’s been produced, and the work that’s gone into it, it should have impact.
I think it also has reach beyond the immediate focus on care providers to offer insight and learning in many other areas.
And as a starter, there’s a space to develop a spin-off guide for researchers in this field. Something that is clearly needed.
So that’s it from me. Thank you very much.
Sorry I had a wobble in the middle.
And I will hand back to Ian.
Plenary: Yo Dunn; An Independent Guide to Quality Care for Autistic People – The National Autistic Taskforce
Dr Ian Ragan:
Yo, of course, is known to many of you.
She’s a trainer and consultant across the public sector with a particular interest, primarily in adult social care, and autism and the law.
She was a member of this NAP autistic advisory panel that I mentioned earlier.
She’s now the strategic lead for the National Autistic Taskforce, and she led the development of the NAT independent guide, which is what she’s going to be talking about.
She writes on legal and policy matters affecting autistic people and her book Social Work with Autistic People was published last year.
Yo, over to you.
Thanks very much Ian.
I do have some slides, so I will make those visible to everyone now.
So I’m gonna shift our focus a little, if i may at this point, more towards practice in health and social care, which is more my field.
I will start just by going back over some of the things to which Sara has already eluded, and Ian mentioned NAT’s origins.
So, NAT has been around now for three years.
NAT is autistic run – as Ian introduced himself as our token NT – and NAT draws very much on collective autistic knowledge and expertise.
But NAT is a specialist organisation. It is not intended to be generally representative of autistic people.
NAT’s focus is very much on providing a stronger autistic voice on issues of relevance to a group that I loosely coined the term ‘The Other Half’ for.
How do we define ‘The Other Half’? Well, we’re talking about autistic people who may be less able to advocate for themselves. Autistic people who are diagnosed with learning disabilities, who are considered to have the behaviour which challenges, autistic people who are less verbal and autistic people described as having ‘complex’ needs.
So our focus is very much on issues of relevance to that group and I’m highlighting that to try to ensure that nobody gets the impression as we talk about the NAT guide that this is simply a guide to how to help and support autistic people who are able to advocate for themselves.
Very much not the case – it’s very much about supporting autistic people right across the spectrum.
Those involved in NAT, as Ian says, were drawn from those originally recruited by Dinah Murray to the National Autism Project and have particular knowledge and skills in care and support, and relevant other knowledge.
So the directors of NAT are myself, Leneh Buckle, Damien Milton and Kabie Brook. We also have others involved who are assisting us, such as, Ian Ragan, Jo Minchin and others.
I also just want to set what I’m going to say in a little bit of context because, as Ian said, the NAT Forum has been quite a long time in the coming, and it is actually a little while since we originally published the guide.
And now we have quite a lot of developments going on.
In England we have the refreshed Autism Strategy and implementation plan.
Some of you may have heard me on the subject of the Autism Strategy before and know that I am serially not hugely impressed by it. But, nevertheless there are some things – mainly in the implementation plan – which we do welcome. In particular the extension of LeDeR to autistic people without learning disabilities. And the expansion of the STOMP and STAMP campaigns, as well as the improved digital flags to identify autistic people. Which will, amongst other things, lead to better data collection around mortality and health inequalities.
I’m sure many of you who work in the field are also very aware that recently the government made an enormous announcement about social care. However, if you actually read the fine print, we will see that there is little or nothing that actually suggests that frontline social care is going to get any more funding anytime soon and certainly not nearly enough funding for local authorities to be able to adequately meet the needs of their autistic populations.
In Scotland we have proposals for a Learning Disability, Autism and Neurodiversity Bill and a commissioner. All very welcome. I admit to a certain amount of skepticism. We await to see what actual outcomes that has in terms of meaningful impact on the lives of autistic people.
And of course we also have the proposal to develop a National Care Service for Scotland. Again, insufficient detail to really have a view on that, as yet. We await developments.
But I think in the context that we do actually currently have now, the NAT guide is still extremely relevant.
What is it? Well, it came about, in part, because I’ve been involved in providing specialist autism training in addition to my legal work with social workers for quite some years now. And all too often, practitioners enthusiastically learn all about autism and then they say to me, “But where can I get a good service for the autistic person who I am assessing who needs care and support? And what would that good care and support look like?”
So the NAT guide is our attempt to give them an answer.
It was originally published back in 2019, but obviously Covid has made it quite difficult to distribute the guide as effectively as we would have liked.
It’s very much intended for care providers, but also for care commissioners and care inspectorates, who we would strongly encourage to use it to hold providers to account for the quality of care that they are providing for autistic people.
It’s about what good care and support looks like for autistic people right across the spectrum and in all age groups, so children as well as adults.
The other key thing to recognise about the NAT guide is not only is it a guide that was written by autistic people, but it has been created entirely independently of those who commission, provide and inspect health and social care.
So what does the guide offer to Care Providers, Care Commissioners and Inspectorates?
Well it sets out what we consider the 10 key elements of quality care. And it relates these directly to the Health and Social Care Standards used by Care Inspectorates across all four nations of the UK.
It provides a really detailed and autism-specific view of what ‘good’ care looks like. It’s also intended to empower those who use services – who are supported by care and support services – to evaluate for themselves the quality of the care they receive.
And we have an autism-specific Easy Read version available on the NAT website. It was created on behalf of NAT by Opening Minds.
It’s also for care providers, schools, health services who wish to adopt it, a way for them to demonstrate the quality of their provision.
And it’s also intended to empower Care Commissioners to identify whether the service that they are being sold as ‘specialist’ for autistic people really has the quality that they are being asked to pay for.
So, without further ado, I’m going to talk through a little bit each of the recommendations in the guide and just talk a little about what they mean and how perhaps they might be realised in practice.
Which is what I hope, in another half an hour or so, you will all be discussing in the workshops.
So, top of the list – and the numbering is not coincidental here! – we have ‘Respect and promote autonomy’. This is the top priority.
And yes we do mean for autistic people right across the spectrum. Very much we mean for The Other Half.
Because the best way to provide the absolute best care and support for people, the best way to safeguard autistic people is to enable us to have as much control over our own lives as possible.
So we’re not talking about just being person-centred.
We’re not talking about putting “I” statements into people’s mouths.
We’re not talking about minor choices about what you’d like to do this afternoon.
We’re talking about real control and influence over who supports us and what they do and what we do with our time, our lives, where we live, who we live with.
All of these things.
And we are highlighting the fact that, all too often, in care and support services the mental capacity of autistic people is assessed and people assume that capacity is a fixed characteristic caused by the disorder.
Instead of recognising that most disabled children and young people grow up wrapped up in a certain amount of cottonwool, lacking experiences and opportunities to practice decision making and risk taking
and to learn skills.
So, good care and support actually seeks to increase people’s mental capacity to take their own decisions.
To support their learning and practicing at making decisions.
Good care and support also distinguishes between autonomy and independence, because they’re two different things, and sometimes they can be in conflict.
Independence is, of course, a very high priority for all local authorities who are desperately trying to make their very stretched budgets reach as many people as possible, and trying to reduce their care and support needs.
So making people more independent save money – great!
Unless, it makes them less autonomous.
Because, if someone has a lifelong permanent disability and they need support and they’re always going to need support, there can be dangers in maximising independence when it reaches a point where maximising independence actually means that that person has to cope with a lot of stress, expend what limited resources they have on day-to-day survival, and actually that reduces how much control they can have over their own lives.
Reasonable adjustments need to be made much better to enable decision making.
Those of you who are familiar with the Mental Capacity Act will know that we’re supposed to take all practicable steps to support people with their decision making.
But practitioners can often trot out the examples given in the Mental Capacity Code of Practice
like ‘pick the right time of day’, but don’t know the most basic thing about supporting autistic decision making.
Give us time to process the information and preferably present the information in accessible forms using visual as well as oral communication.
Respect autistic people’s right to make unwise decisions. We may have different priorities. Conforming, being included, doing what’s typical may not be a big deal to some of us.
Our priorities may be different.
What looks to other people unwise might be the right decision for us.
And we need to prioritise people’s human rights and have a rights-based approach to care.
We need to ensure that people, whatever their mental capacity, are given full and honest information about their own lives.
We need to teach care workers that lying to people is not acceptable.
And we need to regularly review and question restrictions: Why exactly is this restriction necessary? Do we actually have an evidence base for assuming that this autistic person will come to harm? Have we attempted to teach them to keep themselves safe or have we just gone “there’s a risk so we need to restrict this person”?
And finally we need to make sure that staff actually follow people’s care plans in practice, because you can write the most wonderful person-centred care plan, but if the care workers are too poorly paid, too rushed and not able to read and implement the care plan in practice, then it’s just a piece of paper.
So that’s what we mean by ‘Respect and promote autonomy’.
We also think that good care and support supports communication effectively throughout the lifespan.
So, we think that services should routinely offer and be receptive to alternative forms of communication, and we mean that with autistic people right across the spectrum, including those of us who speak.
People need to have up-to-date technology and internet access.
There is a considerable delay and deficit in prioritising high-speed internet connections and up-to-date technology for those who are very dependent on care services, who live in supported living, residential care, and so on.
We highlight the benefits of care services having a specialist role of a Communication Support Worker, an idea initially floated by Dinah Murray, and the value of a specialist focusing on exploring and developing individual communication systems and development of functional communication at all ages.
Never ever assuming that an autistic person is incapable of functional communication.
And we think that it’s important for care providers to support and empower staff to share, learn and develop communication knowledge and skills.
In the guide, we illustrate our recommendations with many case studies, and in the area of communication, we have a particularly important case study, I think, from Surrey and Borders Partnership NHS Trust and their Augmentative and Assistive Communication project.
And I believe we have Katie Nurse here from that project, if people would like to speak to her. She is the full-time project lead and the project focused on service users who are autistic and have moderate to severe learning disabilities most have lived in large hospital institutions for many many years.
And the focus of the project is to work on making information accessible to all of those people. Including those with needs considered complex. So that’s about finding what works for the person, not assuming that the person is incapable. It started with just one person, but now involves 25 people
And the aim is to, not just build a communication system for someone and then move on, but to embed the use of individualised communication in daily lives, and in the routine practice of staff. In order to enable people to communicate their choices their, dreams, their desires.
That requires ongoing support to review and adjust these things to meet people’s needs. And it requires an openness to using a very wide range of approaches to communication to suit the individual from high-tech options to quite low-tech ones.
The third recommendation of the guide is to provide care which is autistic person-centred.
Autistic person-centred is a little bit different from just person-centred care. Because, what we mean is focusing
on identifying and recognizing the autonomy of the autistic person themselves, as distinct from the views of their families, care providers and care commissioners.
Which doesn’t mean that the views of their family are not important, but they are separate.
It means considering the needs of autistic people in the planning and management of the service. Minimizing staff change, matching staff to service users on the basis of mutual interest and compatibility.
It means thinking about what the goals of care and support are.
Focusing on maximizing well-being and reducing distress. Rather than giving people a ‘normal’ life. Or, teaching them to stop displaying their distress in ways that challenge other people, rather than addressing its causes.
And it means a Care and Support Service which routinely considers autistic needs such as, preparation for change, options to withdraw from social interaction.
I know we’re short of time, so I shall move fairly quickly through the recommendations.
Number four, ‘Tackle environmental and other stressors’.
So, we think every Care and Support Service, every environment that autistic people are receiving care in, should have autistic-led sensory reviews of this environment.
If at all possible, the individuals who use the service should be invited to feedback about what is a problem sensory-wise, what they need in the environment.
If that really is not possible, then the next best thing is other autistic people.
Sensory adaptations.
Protective equipment – like sunglasses, noise cancelling headphones – should be routinely available.
Staff policies should prioritise autistic needs. So, for example, banning perfumes and fragranced deodorants among staff. Ensuring that staff respect sensory preferences, including people preferring not to be touched or liking a particular kind of touch.
And providing safe ways to meet sensory stimulation needs as a matter of course.
Services prioritising accurate, honest and specific information being provided for service users.
Prioritising autistic people’s need for routine, structure and predictability. Even if sometimes staff might find it a bit boring.
And ensuring that there is always good preparation for change. Including supporting autistic people to understand potential changes in advance and developing the ability of autistic people to understand and
access information about what will change.
Recommendation five is around removing barriers to access.
Things that would make a difference there:
Ensuring that people have ready access to advocacy.
Ensuring that people are fully involved in decision-making. So, even where someone lacks mental capacity, they should still be fully involved in best interest decisions about their lives.
It’s also vitally important around health care and health inequalities. Ensuring that there is good and early recognition of co-occurring conditions.
And that care and support services eliminate barriers to health care.
Ensuring that people have good and familiar support with accessing health care appointments and that health providers make reasonable adjustments.
It’s also important that care and support staff are trained to support decision making and to support access to healthcare.
And that they challenge discrimination in the treatment of autistic people across all services.
Facilitating access for autistic people to the full rights of citizenship. Including voting and political activism. Including connecting with the wider autistic community.
Ensuring rewarding activities for people, That people have a right to do things which are meaningful, not merely be kept busy.
Enable people to contribute to society in a way that is meaningful to them.
So, just a very quick example of that, from my direct experience:
My younger son who is autistic and has learning disabilities has a lifelong and passionate interest in steam trains.
So why am I the only person? – No school, no care service, has ever suggested that he might volunteer for a steam railway! – It fell to me to suggest that fairly obvious way for him to participate in the world in a way meaningful to him.
His school runs a career day full of care providers and day services.
Yeah, so meaningful activity in ways that actually matter to the person, not just keeping people busy.
And again, ensuring equality in internet technologies and up-to-date devices.
Number six is around fighting the stigma and discrimination.
So we’d like people to create and sustain a rights-based approach to care, to actively support the rights of autistic people.
To recognise that no autistic person requires long-term institutional care for autism or learning disability.
Yet again, just last week, we had all over the news the safeguarding adults review from Cawston Park
And yet again we had the same talking heads saying, “Yes yes yes, we must do better at getting autistic people and people with learning disabilities out of hospital. But there will always be autistic people and people with learning disabilities who need specialist help.”
Rubbish, not in institutions they don’t.
Not unless they have an acute mental illness which requires treatment.
This assumption is built into the system, and it’s really really prevalent.
‘Specialist’, ‘Complex’, these are just labels, they don’t mean anything.
CQC just reported in ‘Out of sight – Who cares?’ that those ‘very complex people’ who are in institutions are actually receiving degrading and inhumane care involving restraint, inappropriate medication, and being cared for day-to-day by unqualified healthcare assistants on the minimum wage with little or no autism training.
This is not specialist help.
Real, effective and measurable progress towards all autistic people living in the community – Not just another target, not just another program – We need to stop putting people into institutions and meet their needs in the community.
And that comes from not talking about behaviors, not saying people are complex.
Just providing good care and support in the community.
Supporting staff and families. Reassuring them to have the legal literacy and the confidence to enable and empower positive risk-taking and a positive and accepting attitude towards autistic identity, which also tackles bullying
And finally, a key element in there is tackling and discouraging those fixed beliefs and assumptions about capabilities.
“Oh they’re not capable of that”, “They have behaviours”, “They have complex needs” and these sorts of things.
Recognising behaviour as distress is such a key recommendation that I could easily talk about it all day but I only have about 10 minutes, and I’ve got three more recommendations to get through.
So, very quickly, we do not think that autistic people should be being restrained. At all.
If a restraint does happen, that should be treated as a failure.
And the service should be going “What did we do wrong that we allowed the situation to deteriorate to such an extent that we had to subject this person to inhumane treatment like that?”
Stop blaming autism.
Autism does not cause challenging behaviors, this is not an inevitable consequence of autism.
People would not say that they had behaviours, or their friends or family members had behaviours. But the minute someone’s autistic, we have behaviours. Rubbish!
We need to stop doing this.
Quit labeling people is ‘complex’.
An autistic colleague of mine, who is less familiar with social care than I am was going with me to a meeting a few years ago in relation to the National Autism Project. Now this friend knows a lot about medical diagnoses, and she said to me, “What does this word ‘complex’ mean? I keep hearing people talking about ‘complex’.
That’s not a medical diagnosis. What’s ‘complex’ mean?”
“Expensive,” I told her.
It doesn’t actually mean anything in terms of the person and their needs.
Do not take away choice and control for an autistic person.
When an autistic person is distressed, the system puts in more people, more interaction, staring at them all the time and putting them into even less suitable environments.
Give people more choice and control to be able to cope with the world that they are experiencing.
Challenge proposals or decisions to remove an autistic person from their local community. Do not accept this person cannot be cared for in the community.
Modify the environment to meet the needs.
Look for underlying causes not just triggers of behaviour.
Very often I see people doing a type of analysis that looks to me like looking very closely and minutely at the last straw when the camel’s back breaks.
When often we may be experiencing cumulative stresses which have built up.
Work with the autistic person as a collaborator to make sense of what is distressing them and help them.
Support us to manage stress and to recover from distress.
Avoid focusing on ‘behaviour support’ rather than meeting people’s needs. And recognise the difference between behaviour which is actually a problem, that interferes with someone else’s human rights or is seriously harmful or dangerous as opposed to just ‘not normal’.
Accept and accommodate autistic behaviors that are just ‘not normal’ and aren’t infringing other people’s rights.
Support autistic people to find ways to meet our needs.
Provide opportunities to meet our sensory needs.
And recognise that sometimes it’s the service, or the staff, or the environment which is just not suitable for this autistic person, and we need to change the service or the environment.
Again, we have a case study around recognising behaviour as distress. We don’t have time to talk about it in detail.
It’s about St. Clement’s School in Scotland who instituted a No Restraint policy very successfully So please do have a look at that example in the guide for how it, yes, really can be done in the real world.
Recommendation eight is around better transitions.
A ‘whole life’ approach not just transition from children to adult services, but from one placement to another.
Plan well in advance for transitions whenever possible.
Advocate for good advanced planning from service commissioners.
Tell people what’s happening.
Warn them about moves.
Yes, it may upset us – we’re autistic, we don’t like change very much.
But it’s a lot better to be warned about it than it is to have people spring surprises.
Prepare autistic people.
Provide information, support, repetition, visual aids, timetables and, don’t expect us to be terribly happy about it.
Recognise that uncertainty and unpredictability cause stress.
Recommendation nine is about training.
All care and support services will say that they do autism training. But is it regular, sufficiently advanced, really practical training? ‘Awareness’ is not enough.
Does it support staff well enough?
Is the training autistic-led and/or autistic-designed? Preferably both.
Does the training include ensuring that staff have a good understanding of Human Rights and Mental Capacity law?
Is there ongoing support and development for staff focused on people’s human rights, and does that staff training promote empathy for autistic perspectives, or does it just teach staff about this strange breed of people?
And finally we think that good care and support services need to accept difference and support positive autistic identity.
That’s about recognising and referring people for diagnosis.
It’s about avoiding imposing ideas of what is ‘normal’. Accepting people’s choices to withdraw from social interaction.
Recognise that for autistic people being included in every coffee morning and chat and other activity that’s going on may not actually be good for us at all.
Accept the fact that we may prefer things to stay the same.
And recognise the difference between us making choices like this and being unable to cope with the change and needing support to do so.
And also facilitate access for all autistic people right across the spectrum to opportunities to access autistic-controlled space and the wider autistic community.
So the NAT guide is, we hope, fairly comprehensive.
It provides case studies demonstrating how many of the recommendations can indeed be implemented in practice.
We do recognise that for many health care and care services the recommendations are challenging when compared against current practice.
And yes we also recognise that some recommendations cannot be fully implemented without system-wide change without considerably more investment, for starters, in social care. But there are things that we can do.
Yes, there is a significant shift involved for many services from their current practices and some costs. Although we would argue that, system-wide, implementing these recommendations would be massively cost-effective. Because it would prevent the massive bills for people being in ATUs.
We also think that a lot of it is things that can be done without a huge amount of resources. It’s about moving towards a genuine empathy with autistic perspectives, empowering service users.
And also empowering frontline staff enabling them to develop their skills and to engage in reflective practice.
And finally, the carrot for care services here is that it will enable services to demonstrate the quality of the support they offer and persuade commissioners to fund them at an appropriate level to provide and maintain that level of support and good practice.
So, it’s time for everybody to go off into their breakout rooms where you will have the opportunity to discuss a selection of the recommendations in each of the workshops and particularly how they might be implemented in practice in the context in which you work.
NAT Guide Recommendation Introduction Videos
Recommendation 1 – Respect and promote autonomy
I’m an autistic person – Autistic scholar activist, I guess might say at the moment with a background in advocacy.
I’m also co-director, with Celia Kitzinger, of the Open Justice Court of Protection Project which is concerned with promoting open justice and public awareness, public understanding of the work of the court of protection, and of mental capacity, mental capacity law in general and its impact on disabled people.
Autonomy is the right to make your own decisions and to have your wishes, preferences, values heard, respected and integrated into your life.
One of the reasons why I like the term and I prefer it to the one that maybe is more common – It’s more common to talk about independence, I guess, in relation to disabled people in general obviously including autistic people.
I think one of the problems with independence is that it has been taken and, the way that a discourse of independence has been sort of used, and perhaps abused, rhetorically has been to suggest they do everything for themselves with no, or minimal, human support.
And I guess certainly, if one were to be cynical, one might suggest that that’s an approach that suits those that are concerned with balancing budgets and managing resources.
If we think about what autonomy is, in its kind of most basic form. It’s about the right to make your own decisions, to make your own choices, and to live the kind of life that you want to live.
If you’re a person who doesn’t have ‘support needs’ in inverted commas, then your ability to live the kind of life that you want to live is kind of within your grasp and it it’s possible for you to make that happen, really on your own terms.
Whereas, if you’re a person who has support needs, who’s identified as having support needs, then probably a lot of the things that you want, or a lot of the access to activities that you want, or to the world in general are not necessarily within your own grasp, and they might require a lot of fighting, battling for, in order to access those things.
Being seen as a person who has support needs, particularly what we might consider like – what people often call ‘high support needs’ – brings its own set of social stigmas as well.
So if you’re a person maybe who doesn’t use spoken language, you tend to be seen as a person who doesn’t have the skills or the cognitive ability to actually exercise your own autonomy. You’re seen as a person who doesn’t know what you want. And if you’re seen as a person who doesn’t know what you want, it’s too easy for other people to come in and project what you want.
It’s amazing how closely, what’s suggested that you want might mirror what another person wants, or what’s convenient for them.
[Video cut to a new question here]
I think some of the biggest hurdles to people with high support needs, making decisions for themselves or having their wishes, and their views, and their values taken into consideration, is actually the lack of imagination of the people around them to actually think about what needs to happen, and what needs to be done, and what can be done to enable a person to express well, to formulate their own views and then to express them.
When I’m meeting a new person it can be so overwhelming for me on a sensory level. So trying to manage and make sense of their tone of voice, and their general vibe, and having them in my space are so overwhelming that, actually, I’m so focused on those things, that trying to make sense of what I actually want in that situation, it’s kind of impossible, because what I’m going to do, often without thinking about it, is I’m going to give the answer that I think the person wants.
And also, it’s about making sure the person knows what the options actually are.
Recommendation 2 – Support communication effectively throughout the lifespan
Hello my name is Katie Nurse and this is my friend Ann Harber. I’ve known Ann for about 13 years now, when I came to work where she lives.
And you live with three other people, yes?
Ann Harber:
Yeah.
Katie:
Yeah. And we’ve been working on a communication project together.
Ann:
Yeah.
Katie:
And Ann now has iPads.
I think you’ve got three now haven’t you? Yeah?
Ann:
Yeah.
Katie:
Touchscreen computers, interactive whiteboards –
Ann:
Yeah.
Katie:
And we’ve also used some low-tech communication PODD books.
And with all this work, Ann has presented at several international and national conferences.
Recommendation 3 – Provide care which is autistic person-centred
So my name is Liz Howard. I’m a social worker and I’m currently working for the British Association of Social Workers England team as a professional officer.
Dr Yo Dunn:
We’ve asked you to introduce recommendation three of the NAT guide, about providing care which is autistic person-centred.
So, could I start out by asking you: In what ways do you think being autistic person-centred requires going beyond person-centred practice more generally?
Liz:
Thanks Yo. Yeah and it’s great to be able to talk about recommendations three, which is really all about the focus of person-centred care being on autonomy.
I mean that’s obviously a feature with other approaches to person-centred care.
However, I think, particularly when we’re thinking about this approach that we’re saying here, autistic person-centred care, it’s really about not making any assumptions at all about what independence or autonomy looks like, or feels like, for an autistic person.
It’s really important to separate out the views of other people.
Distinguish those from what the autistic person is telling you, or expressing to you. And to separate that out from what other people around the person might feel is best for them.
It’s really also about enabling the person to develop their own autistic identity.
Okay, and that’s very much about not expecting the autistic person to fit in with any kind of preconceived ideas about routine, about structure, about social situations, about activities, about what they like to do, or interaction.
And it’s really really important, the focus of autistic person-centred support is about the person’s quality of life.
It’s about having empathy with autistic perspectives. And that really includes an understanding of the need for downtime, and that’s really about time that’s not spent interacting, or doing things, or the person feeling that they have to be doing things as well.
It’s also about about avoiding unconscious assumptions about what ‘normal’ or ‘good’ look and feel like or what we think it might look and feel like.
And that can include: Social inclusion, having to do things, being in other people’s company as well.
This is all about thinking about the person’s well-being and how we can best work to promote that.
Yo:
Thank you very much.
So, how do you think that social workers particularly can play a key role in ensuring that care and support is autistic person-centred?
Liz:
Yes that’s a really really good question and, in terms of what we do with social workers – So again focusing back on that concept of promoting autonomy – As social workers, the work that we do is all about supporting people to be independent, supporting people to make their own choices and decisions, and ensuring that people have the right support to make this happen, and defending and upholding their right to do so, even when it’s something that other people might not think is the best thing for them.
To see social workers – we’ve got a really key role to play here. We’re very often involved in carrying out assessments of people’s needs, and particularly for autistic people, that really, we really need to be focused on during, what we call ‘reasonable adjustments’, and making sure autistic people connect this with what they feel, what they want, and particularly in relation to identifying what their needs are, which will then go on to inform what that support looks like as well, and how they’ll experience that.
So I can’t stress enough that it really is all about emphasising the individuality of autistic people. So it’s not allowing any kind of assumptions or stereotypical approaches to be the basis on which support is provided.
So an example of that might be, an assumption about autistic people having to have a very strict routine, and activities that can’t be deviated from. When actually, what needs to be considered is how new experiences, new things can be introduced and explored based on what the person likes, what motivates them, what they enjoy, and really building on the person’s strengths.
Most importantly, as well, going at that person’s pace.
Recommendation 4 – Tackle environmental and other stressors
Dr Yo Dunn:
Welcome Jo Minchin.
Hello!
Yo:
Can you tell us a bit about why you’re interested in recommendation number four?
Jo:
Okay, well I suppose I’d better tell you quickly a bit about myself so you understand why I’m interested in it.
I’m an autistic woman myself, I was late diagnosed, and I’m mother to three neurodivergent adults.
In my day job I work for the NHS in a Clinical Commissioning Group, as an Expert by Experience, working in Care and Treatment Reviews in Transforming Care. That’s getting autistic people and people with learning disabilities out of unsuitable environments and into the right ones, and it’s all about making sure that they’re getting the right kind of care.
One of the things that I most encounter in Care and Treatment Reviews are people who are very very very stressed. And that can be mistaken as being a mental health problem or even psychosis, which it isn’t [always].
Often people are sort of poked into that stressed state by being in unsuitable accommodation where their sensory needs are not known or even properly assessed or catered for.
People may not manage transitions or periods of dire uncertainty very well if they’re not getting the right support for that. That can also push people into a really really difficult state. I mean, that’s something we see an awful lot in young adults, teenagers, when they’re going through puberty and all of that without the right support and understanding around them. It can mean that they end up in the wrong places.
Yo:
You said quite a bit in there already, but can I just ask you to have a go at trying to define what ‘environmental and other stresses’ are?
Jo:
Yeah. Most people just think: “Oh it’s whether or not you’ve got headphones on or tinted glasses or something like that”, and, actually I do use tinted glasses to access the office space at work, because the lights there are sort of things that drill into the back of your skull.
And yeah, I’m not short of a few pairs of nice headphones either, but, it’s more than just the sensory stuff. Even though the sensory stuff is the absolute basics. The number of people who I encounter in care and treatment reviews who have had no exploration of their sensory profile, no understanding of what their sensory needs are, and no provision of any kind of sensory diet.
You know you’re effectively poking people into spaces that are like torture chambers. It doesn’t put us in our best light. It means that we’re not functioning in the way that we really could do optimally, and if you put us in environments that are toxic and painful to us, more than we’re in environments that work with us, you tend to get distressed behaviour.
I think it’s probably the best way to put it. And the fairest way to put it. Yeah.
Yo:
Why is it, do you think, that issue of tackling these environmental and other stresses is so central to providing good care and support for autistic people?
Jo:
Honestly, I don’t think I’ve ever met an autistic person that hasn’t got something different about them in their sensory profile from the perceived norm of what, you know – If society gravitates towards the average, then you’re always going to get people that are outliers from that average.
And, there are whole areas around sensory processing, auditory processing, visual processing, the way we think the way we actually sort of experience, both the external world, and also our own internal world that are different. And it’s not wrong, that’s our normal.
There’s a need for people to understand that this exists, and it’s not just us being prissy, and there’s a need for people to be proactive in discovering what we need to do to make an environment better for an individual to deal with.
Recommendation 5 – Remove barriers to access
My name is Dr Mary Doherty, I’m an Irish consultant anaesthetist. I was diagnosed with autism in 2013, my clinical role involves anaesthesia and my research interest involves looking at barriers to health care for the adult autistic community, both in physical health care, general practice and in mental health services.
The barriers fall into two separate categories. One is in terms of difficulties accessing services, and that’s things like difficulty using the telephone to make appointments, and that’s the most common way of making appointments.
But then there’s also subsequent difficulties once people have accessed the service. There’s difficulties interacting with practitioners, with healthcare providers, around communication. There’s difficulties in the in the physical environment, sensory sensitivities.
And then there’s practical issues, such as people needing support to access healthcare. Practical issues around organising and planning for appointments and planning for follow-up care.
So there’s multiple barriers faced by autistic people, which have significant consequences in terms of adverse health care outcomes.
Dr Yo Dunn:
How do you think services could make themselves more accessible, and even challenge wider barriers in society?
Mary:
There’s a lot of really simple things that can be done. And the most important need is for understanding and training,
and awareness of what it means to be autistic. Awareness of the barriers that we face.
Simple environmental accommodations. Even such as recognising that your typical healthcare waiting room is an absolute sensory nightmare, and allowing a patient to wait outside.
Other things such as training we need to embed autism understanding and training for all health and social care providers, from the very earliest days of training right up to experienced practitioners.
But mostly I think, just changing the culture such that autistic colleagues can disclose, and can help non-autistic colleagues to understand our autistic patients and autistic service users. But currently, stigma means that most autistic healthcare providers don’t disclose. Which is a real shame.
Yo:
Is there anything else that you can think of that you would like to say to health and care providers particularly?
Mary:
It’s important to recognise the impact that our interactions with our autistic patients have in terms of adverse healthcare outcomes.
We know that mortality and morbidity rates for autistic people are appalling. Prior negative experiences in health care are an independent barrier of future care for autistic people.
So it’s really important that when we interact with autistic people, we’re considering future care, not just the immediate interaction.
Yo:
Yeah, okay, I could ask you what you think services outside of healthcare specific services could do that might impact on health healthcare outcomes for autistic people.
Mary:
Yeah that’s a really important issue because, as I said, a lot of the difficulties that autistic people have accessing health are to do with what we might term executive functioning difficulties. So planning appointments, organising appointments, remembering to take medications, being able to pick up medications.
Commonly people are referred to a specialist, but simply don’t make the appointment. Never get around to making the appointment.
If an appointment needs to be changed, just simply don’t get around to changing the appointment, and then never follow through.
And there’s a very specific need for for social support to access healthcare. Because also we tend to assume in health services, we tend to assume that people will have friends and family to be able to fill that gap. And quite commonly for the autistic population that’s not the case.
In my research, for example, approximately one-in-five people had nobody available to bring them belongings after an emergency hospital admission, or to collect them after a day case procedure or to look after them following surgery at home.
So it’s important to recognise that there is a very specific need for social support – for example, for social care workers, for support workers – and to understand their role in supporting people to access health care, would be really important.
One other thing that’s useful is where practices have like a specific liaison person. And that can be really beneficial for the autistic community.
And again, that is social support. But it does facilitate people accessing healthcare.
Recommendation 6 – Fight stigma and discrimination
Hi, I’m Venessa Bobb and I’m the founder of A2ndVoice and Autism Thrive Services.
Dr Yo Dunn:
Great, so could you tell me, in your experience, what kinds of stigma and discrimination autistic people face?
Venessa:
I think from my experience raising two autistic teenagers, and [doing] a lot of work with the National [Autistic] Society Lambeth, working with the autistic adult group.
[I would say that], it’s a lack of specialist provision. It’s lack of – one autistic person is 30, said to me – supported housing, benefits, employment, mental well-being.The fact that – obviously, with Covid, what happened, it’s like they were ignored. And when they’re asking for help with benefits, it was sort of like, ‘Get on with it.’
So, because they can’t see what autism is, the person from the other end, they assume they understand.
So I think it’s just lack of of understanding, and respecting, when somebody says ‘I’m autistic’, to think that, ‘Oh, well that autistic person can cope, why can’t you?’
So I think it’s a lot of high expectations and assumptions that have made, that has actually caused more damage to the mental well-being of autistic people.
Yo:
Okay, thank you.
Could you talk a bit about what you think care and support providers and those who commission care could do differently that would reduce stigma and discrimination and promote equality?
Venessa:
I don’t think they’re listening to the autistic person. It’s all about the listening.
I look at the elderly [autistics]: People talk about the children, they may talk about young people up to 25. But it sort of feels like they’ve forgotten about we autistic people do become elderly people.
So my thing when it comes to the commissioners is they need to invest in looking at end of life as well.
Because we’re in this pandemic where people are dying, and I think that autistic people, with regards to social services, social care, adult social care. The clinical commissioning groups need to start looking at the autistic voice. They need to listen to autistic people, because they, without the autistic people, they’re not going to get it right.
And as a black mother with autistic young people, I’ve seen the challenges within just the black community. How stigma can be overlooked as well.
Yo:
Yeah. Do you think that focusing on a human rights-based approach to care and support could help?
Venessa:
I think human rights, I think has really gone out the window. Because people sometimes use it for the wrong reasons.
But I think for autistic people, in particular, I think I believe it should be included, because I just feel like ‘autism’ is a word that’s just being used very loosely. But when the autistic adult is speaking, I think all their rights seem to be taken away, because they always seem to think it – as much, as we said, the neurotypical way – I don’t think they respect autistic people.
I’m being very honest, I just see a lot of very angry confused autistic people, because of the way society just seems to think that ‘You’ve got what you want.’ No, they haven’t got what they want.
So I believe that human rights needs to be included when it comes to autistic people in particular. Because their needs are very different. I won’t say ‘complex’, very different. Because the way society overlook their needs.
Yo:
Okay. thanks very much.
Is there anything else that you’d like to say about the recommendation that care and support providers need to fight stigma and discrimination?
Venessa:
I think for me, anything to do with autism, I think the fight has been where– The government needs to really wake up and realise that, when somebody says ‘I’m autistic’, they can’t just look at autism. They’ve got to look at the wider picture, individualised for that particular individual.
Because, as I said, I’ve met lots of autistic people, especially over Covid, and every one of them do not have the same challenges. They’re asking for something very different. And I think the services, the specialist services, are not there.
And I don’t care [what] anybody says to me. I know. Because I’m seeing it with my 18 year old and 15 year old, and my undiagnosed 20 year old. Where you’re asking for help and we’ve been told, ‘Go back to social services.’ And we’ve been told that the provision is not there.
It’s about listening. It’s respecting somebody who says ‘I am autistic’ and not to be told, ‘Well you look okay.’
They need to stop saying that. Because I think it’s an insult when they when they use that term, because it does more damage to that autistic person.
Recommendation 7 – Recognise behaviour as distress
Tomas Clayton:
Hiya, I’m Tomas Clayton.
I was diagnosed with Aspergers in 1996, I was age 13. By the time I was age 13, things at home and at school were quite bad.
I try not to speak about things just for myself. Things need to change for everyone. Some of my friends have never had an adult life outside of hospital, having similar experiences to mine, autistic friends with and without learning disabilities.
When I get overwhelmed or distressed, I tend to hit my head or bite my hands and this can lead to the police being called, and ending up being restrained by them and others, and eventually into hospital.
Staff in hospital often don’t understand how anxious I’m feeling and why I’m doing things. Because of this they often get angry and shout, or punish me by nipping me on purpose while restraining me.
Sometimes they’d push me to get upset because they’re bored or laugh at me or hurt me in other ways.
A lot of bad things have happened in and out of hospital, by professionals. A lot of things that at the time I just accepted as how things were, but, looking back, really shouldn’t have happened.
I lost a lot of years, as well, to medication especially antipsychotics.
My mum talks about the time she remembers when I was barely conscious. I remember struggling to keep my eyes open and sleeping a lot.
A lot of the medications I was on, I didn’t need to be on, but because I had side effects, I would end up on more and more.
I remember I was put on Quetiapine, and for months I kept telling people I was scared. They kept asking me “What of?”, and I kept telling them “Nothing, I just feel scared.”
They would tell me that there’s nothing to be scared of. At the time I didn’t know how else to explain it, my heart was racing constantly, I felt like really panicky, on edge and the closest word to me was “scared”.
They thought I was paranoid and kept increasing the medication. I now realise that it was almost certainly a side effect from that medication. I’d had a side effect very similar previous to that, and it had felt very similar.
As soon as they moved me to another medication, the feelings of being scared lifted.
If they’d understood some of my language and communication skills, or read back in my notes, they probably could have worked out that I was describing the physical symptoms.
Although there’s been lots of bad times, there’s also been lots of times when people have taken the time to listen and be understanding. It’s meant I have managed to avoid getting upset in the first place.
Like when support workers who work with me now notice I’m getting overwhelmed or when I say I need to leave somewhere, and they help me find a way out, meaning that I don’t get too distressed, and it avoids having the police called altogether.
I haven’t been in hospital for a few years now.
There’s been a few changes, but one big thing that changed was that I happened to chat to an occupational therapist who was working on sensory needs and autism with someone else I knew, They were talking about deep pressure, and I was saying that, when i was a kid, I used to find being squished really calming.
And they mentioned about how it’s sometimes the reason people can get restrained for long periods because it becomes a cycle of being calmed, but also being upset by being restrained and needing something to calm me down from that.
Over time we’ve learnt better ways to manage some of that now. And it’s helped for me to understand why it happened and find out other ways to deal with things.
Thank you.
Recommendation 8 – Ensure better transitions throughout the lifespan
I’m Dame Christine Lenehan. I am director of the Council for Disabled Children. I’ve been working in this field for 40-something years now. As a social worker and then as a social work manager, and then, for the last 21, director of the Council for Disabled Children. And our work encompasses the life of all children with disabilities. But we are specifically interested in times of change in people’s lives.
Dr Yo Dunn:
Can I ask you whether you think that autistic children and young people are currently well-supported around transitions? And, if not, what you think the main problems are?
Christine:
So for me, it’s the transitions from early years into school. You know?
And that bit about taking on a very different world in school.
But also, particularly what we see for lots of children with autism is that transition from primary school to secondary school and just how important that is to prepare young people.
And I think what we’re seeing is the very best secondary schools, and the very best primary schools really think about them transition.
You know the guide is excellent, and the guide looks at those standards. And a lot of it is obvious, isn’t it? But it doesn’t happen.
That thinking about sensory awareness and the sensory environment that children are going into. That thinking about how some children process information, and what that means to them. And that giving space for children to be different, I think.
I am concerned that when we looked at exclusion information, for example, we were looking at a group of children in secondary school who were actually cognitively very able. They should get their five A to Cs. That pathway through education should be really clear. But they were coming out of those goals, because actually, the social awareness of their needs, the understanding of the space they needed to succeed, wasn’t there.
At the sort of transitions from school to adulthood, I suppose, a number of things: Some of it is about expectation. I sometimes think some of the children we work with have a poverty of aspiration because of the labels that they give them.
So, one of the things in the pandemic that’s been interesting, that we’re pushing is: Universities have reported back levels of high anxiety amongst students with autism.
And how those changes are managed.
And I think people forget that actually many autistic people should be aspiring to university, should be succeeding at university. And again, the sort of space to support young people should be there.
Yo:
The proportion of people ending up inappropriately placed in institutions, detained in Assessment Treatment Units, where things may risk going wrong in the transition from children’s services to adult services that can risk sowing the seeds of those sorts of crises that end with people spending many years in such institutions.
Christine:
If we look at some of the more serious stuff recently: We’ve seen young people end up in very challenging positions, because the mental health needs that they’ve been expressing are not recognised.
I think there’s a huge gap about understanding that link across the system, which means that young people then get inappropriately placed in ATUs.
And everything we know about ATUs is they are not the right place for this group of children. If anything, they will make their condition worse.
And so actually you get those longest days.
Yo:
I was still sort of thinking about social care, and the issues that there are with local authorities’ support services for disabled children, the impact of austerity and difficult financial circumstances on the availability of preventative social care support.
Christine:
All of the evidence of the last few years, in spend across children’s services, shows a move away from early intervention services into crisis.
So, while the model is really clear about intervening early and supporting early, that’s not evidenced by spend.
And that’s not local authorities being difficult, it’s about the challenging resources they find themselves in.
Yo:
Do you think some of the work to be done there around mental health in autistic adults is preventative support?
Christine:
I don’t doubt that. We know that, even for most children, we know that two-thirds – more than that now – of mental health needs in adulthood are apparent by the time somebody’s 14.
Recommendation 9 – Ensure ongoing, practical, autism-specific staff training
Hi, my name’s Rachel Moody. I’m an autistic self-advocate. I do a lot of autism training.
I’m a bit of specialist in accessible information and wrote the Easy Read version of the NAT recommendations.
But I’m also on the Department of Health Autism Exec group, and particularly the Workforce Task Group, which is part of that. So that’s why I was asked to talk about the staff training section.
Yo:
Great, thanks very much.
So could I start out by asking whether, in your experience, most staff in health and social care services have the knowledge and skills to be able to empathise with autistic people?
Rachel:
No, I would say that in general they don’t.
My experience is that whether staff have the necessary skills, it has been pretty much luck of the draw.
I think it’s due more to their, sort of, natural ability to emphasise with neurodivergent people, rather than as a result of training.
Yo:
I see and, can you explain why autism specific training needs to go beyond simple awareness? Why is that important for staff who are working directly with autistic people?
Rachel:
Awareness is essentially just knowing facts about autism and does not really give anyone an idea of what it’s like to be autistic
or where the difficulties arise. It tends to lead to quite a sort of deficit-based knowledge of autism.
Rather than an attempt to understand and to bridge the gap between autistic and non-autistic methods of communication. By the practitioner, as well as the autistic person.
Because we are generally already trying our hardest to communicate, to make ourselves understood, to cope in a sensorially hostile environment.
And I feel that, that quite often staff are not aware of that. Or do not particularly care, if they are.
Yo:
Okay.
Do you think it matters whether the training is autistic-led, or autistic designed? Or is it enough just to involve an autistic person somewhere in the training?
Rachel:
I think it is far preferable for it to be autistic-led and designed.
If you’ve just got say a video of an autistic person, that in itself is a big improvement over not having any autistic people involved, which, sadly is too common.
But, if it’s led by an autistic person, then you get the chance to answer questions, for instance.
If it’s designed by an autistic person, it comes from the kind of knowledge you can only get by living as an autistic person. You’re just getting a far deeper understanding if you do that.
Recommendation 10 – Accept difference and support positive autistic identity
Question: “In what ways do you think care providers could better accept difference and support positive autistic identity?”
Well, first of all, avoid making assumptions. Assuming you’re not autistic yourself, autistic people are different from you in some very fundamental ways.
They can also be very different from each other.
You may find you’re making assumptions you don’t even know you’re making.
Try to let go of your idea of “normal”.
Listen to what the autistic person actually says they want and need, and then believe them.
Also adopt a pragmatic attitude to fixing problems.
If the autistic person isn’t on board with it, it’s never going to work
Ask yourself if this problem is actually a problem to the autistic person, or maybe more of a problem to you or to your organisation
If fixing or treating is needed, then fix or treat specific problems for specific reasons – don’t fix or treat things simply because they’re autistic or otherwise different.
Also be careful with the information you give them.
A lot of autism literature is written from the assumption that everything that’s different about an autistic person is bad, wrong or defective simply because it’s different.
If a book only talks about what an autistic person cannot do, then avoid that.
Autism is a different developmental profile, it comes with strengths too.
It can help a lot to read books, online blog articles, and other information written by fellow autistic people.
Finally, make sure they get plenty of time to just be themselves and enjoy themselves.
Few things wear more on one’s mental health than having every activity, every interaction be in service of therapy, of fixing or improving the person.
We all need our leisure time, let autistic people have theirs.
One other thing that can help a lot, care providers could employ some autistic or otherwise neurodivergent carers.
As different as we autistic people are from each other, there is a certain something that we have in common that makes it easier for us to communicate with each other.
Many autistic people relate better to a carer who is also autistic, but, non-autistic carers who have some other personal experience of being different from the norm may also find it easier to empathise with an autistic person.
Just sharing the experience of being different can already help a lot to break the ice, as it were.
Question: “Do you think access to autistic space is an important part of good care for autistic people? Why?”
Well, imagine being the only one who is like you. Not for a day, a week, or a year, but for your entire life.
Everyone around you is somehow different from you, and finds it very difficult to understand you.
You’re like a puzzle to them. They think you’re weird and bizarre, and they all wish you could just be normal.
You find it difficult to understand them, too, but you’re forced to, just to have some semblance of a life, so, you eventually become quite good at it by necessity.
This is how many autistic people end up masking their differences all the time.
And that masking, if it becomes second nature, can cause you to lose sight of who you actually are. You find some acceptance eventually, but at the expense of being yourself.
But there are also autistic people who cannot or do not mask so much. They often find themselves constantly rejected for their differences.
Either way, this can and does wreak havoc on one’s mental health and basic sense of self.
Everyone needs to be in touch with a community of others like themselves, at least some of the time. Everyone sometimes needs a friend or role model that they can relate to. Autistic people are no exception to that.
Care providers do often recognise this and organise social groups for autistic people. However, they are usually led by a non-autistic person. This is a bit like a women’s group led by a man. It’s not going to work very well. In spite of all the best intentions, it’s always going to be a bit patronising. It’s never going to be quite safe to be yourself.
Autistic space, when done right, is more than just an opportunity for autistic people to meet other autistic people. It’s where autistic people are actually in charge and determine how things work. It’s a place where we still recognise the reality of disability, but don’t pathologise being different. It is acceptable, accepted, encouraged to be yourself, no matter in what way you communicate, no matter how “weird” you are.
Care providers can help foster autistic space and autistic community, not by running social groups for them, but by finding autistic people who have the skills and the motivation to run these social groups, or even other kinds of events all-together.
The yearly autistic-run Autscape conference and retreat can serve as a good example.
Make sure they have the help, information and the resources they need to run these, and remain available for support, but do stay out of the way and let them do it their own way.
Wrap Up: Dr Ian Ragan; Summary of the workshop discussions
Dr Ian Ragan:
So have you gathered Yo’s given me the impossible job of summarising everything in 30 minutes? She’s also vindictively sent me three pages of detailed notes five minutes ago, which now she’s expecting me to assimilate and to present in a coherent fashion!
And my way out of this is to not present them in a coherent fashion, and we’ll see how we get on.
So, could put up the first slides up perhaps, Yo?
Because I’m going to just take them in order and see what I’ve got out of this, I’m also going to refer to points that came out of the videos, which people I hope have seen, but may have forgotten, because there are a number of really, really, good points that were made there and I’m going to try and tie those into the discussion.
So the first one then is on “Respect and promote autonomy”.
[Slides are put on screen]
Yo says that this is the number one priority, and I think everyone is clearly agreed that ‘autonomy’ is a preferred term to ‘independence’. Because independence is something that can be abused. It can be used as a way of restricting resource allocation, etc.
So ‘autonomy’ is quite different.
Gillian Looms-Quinn, in her video, made the point that, you know, if you do not need support, then the life you want is within your own grasp. If you do need support then it’s a struggle, and, particularly you’ll be stigmatised if you lack spoken language.
Even if you do have spoken language, and in her case the difficulty of interacting with someone can render you incapable of expressing your needs such that you tend to agree with what the person you’re speaking to wants rather than what you want to explain to them.
And I think this was clear also from Venessa Bobb’s intervention where she made the problem that her son has, now at the age of 18, he’s regarded as a fully functioning adult, and her views are no longer wanted or respected by care providers. This is incredibly difficult for him, because he’s still a boy, and I think people agreed that there is a problem here.
Schools are important in this because education extends to 25, but autonomy needs to be supported to allow people to make their own decisions, and it’s clearly a complex concept.
The sum of the comments coming through from the workshops I didn’t attend. I’ll just read these really because they all bear on the point.
“No one is really independent some autistic people don’t have enough people in their support network for their well-being so we need interdependence. So people need to be helped to have meaningful connections.
“Making people do things to themselves is often about the provider, having measurable outcomes.”
And, I think I came across that in another context, that provision is often outcome driven – by the measurable outcomes – rather than by addressing the real needs of the of the autistic person.
Someone commented that “You wouldn’t make someone with physical disabilities crawl across the floor to show their independence.” So, permanent lifelong disabilities mean permanent lifelong support needs. Building self-advocacy skills and decision-making skills needs to start in schools, and supporting parents to cope with and support the development of autonomy and risk taking.
So that goes back to the point that Venessa made, I think, that really, this is something that is very, very, important. It’s all very well giving someone autonomy, but not if they’re incapable of expressing their needs.
Autonomy in health care and in research, people really appreciate a GP who respected their right to make decisions about their own health care. And, making people constantly try to do things they struggle with can be very detrimental to self-confidence.
And again, we come back to this deficit-based model, which I’ll refer to in connection with one of the other priorities.
We talked a little bit about accrediting services, perhaps setting equalities training– quality standards on training content.
Also Trevor Wright mentioned support needed for autistic trainers who may be able to be much more effective in communicating with fellow autistic people.
I’m going to move on to number two on “Support communication effectively throughout the lifespan”.
A couple of comments here came through, the role of arts in communication, and expression.
And a wholehearted plea here, to undermine the assumption that there is a whole swathe of the community who can’t be heard from, essentially can’t be communicated with.
Sara made the comment that: “This is the absolute basics of care. Lorcan needed to allow communication in the fashion needed/wanted. Not to teach communication, or teach alternatives. That people should not be an educator in communication, but a partner in communication.”
Again, it’s allowing that flow to come from the autistic person. Providing information technology – which is very helpful in the right context of course – is limited by resources, and there are some settings that have very poor IT provision. For example, internet access in residential care.
So, there’s clearly a money issue here, which is detrimental to the ability to harness modern technology to help communication.
Martijn made the point that there seems to be little awareness that small changes in communication style can be really, really helpful.
It’s not all about the technology itself.
So let’s see what else I’ve got here…
It’s important to ensure the availability of communication partners, someone to talk to, and meaningful things to do, because otherwise you don’t have anything to talk about.
I think this is particularly important for children who won’t see the need for communication if there’s nothing in it for them.
Speech and language therapists are much too scarce.
To do alternative communication well is extremely expensive, so that’s reiterating the point I made.
The autism strategy funding is derisory.
There is no point in training a child and one worker, all staff working with them need to be training, and supported. And getting across to the staff team; some staff don’t seem to engage people in communication. There needs to be a lot more training and support for staff to build on communication skills.
So again, training is going to come up again and again and again.
Let me move on to number three, which is “Providing care which is autistic person-centred”.
Well, we have quite a discussion about whether ‘person-centred’ is the right phrase. And there seems to be some idea that we need a better definition of what ‘person-centred’ means, so there’s consistency in approach. If people don’t understand the same thing, then people will approach it in different ways.
Sara made the point that it could be pejorative. That what we need, perhaps, is a more relational approach.
So, ‘person-led’ is certainly better than ‘person-centred’, and maybe ‘relationship-centred’ is an even better term.
Something, I think, to mull over.
What it means though, is not making assumptions about what independence and autonomy look like. To be autistic, do you have to separate out what ‘autistic needs’ are from what other people feel is best for them?
And, not expecting autistic people to fit in with preconceived ideas, particularly in social situations.
Liz Howard, her video said that social workers provide support in independence and decision making and should understand the needs of autistic people.
And there should be no assumptions, no stereotypical definitions of what autism is.
Because we know that social care, being grossly underfunded, will struggle to meet those laudable aims.
Let me move to number four. Okay, “Tackling environmental and other stresses”, a huge topic.
In Jo Minchin’s video, she described various types of stress, and how stress can look like a mental health problem for the individual, and it could certainly become one.
She looked at things like physical environments, such as accommodation that people have to accept, but also things like transitions, and particularly for young people around puberty.
Of course, there are the sensory issues that need tackling and there is poor provision of that. Poor understanding, and a poor understanding of how painful and distressing this is. And how it can lead to distressed behaviour, which then leads to all the other problems that we are horribly aware of.
Also, this needs to be a greater recognition that autistic people have very diverse sensory problems, there’s not a standard set, and people have both internal and external worlds that they have to deal with.
Jo made the point that even new premises may not necessarily be built in an autism-friendly way.
Again, there’s this lack of understanding that Tim raised, and the adjustments need not be very expensive.
What would be needed is more realistic expectations for guiding service providers.
There are so many simple things that can be done that doesn’t necessarily involve huge expense.
Jill from the Tizard Centre mentioned that the recognition of sensory needs is just not good enough, particularly for people with communication difficulties.
And it’s hard to communicate sensory needs.
People have to find ways in which they improve their knowledge of the person.
Let me see what else came through on recommendation four…
Staff approach, and predictability. Listening to people.
People may not know their sensory needs and be able to explain them – So we come back to the same point again – we need to listen to people.
External expertise from an autistic person who understands sensory needs, who can help make sense of…
Lost my page. I told you this would be incoherent… Okay, um… I don’t know what’s happened here.
I’ve lost something from your notes, Yo.
Dr Yo Dunn:
I think that point was about the benefit, if an autistic person is less able to communicate their sensory needs,
or identify them, the benefits of having external experts who are autistic themselves who can help to articulate those needs to people working–
Ian:
Okay. I just lost the end of the sentence. So, okay.
A comment here about, um… No this is on recommendation… six.
[He takes a moment to get back on track]
The importance of believing people about their sensory experiences.
If staff were told that a diabetic person needed an insulin injection, they wouldn’t say, “No they don’t”, or “I can’t do that for them, I’ll have to do that for everyone else.”
It’s quite a nice point.
Something to avoid is, saying the world is full of sensory stimuli and autistic people just need to get used to it.
We would not say that about other disabilities, it’s patronising.
Autistic people must have access to a safe environment to recover from sensory overload.
Sensory overload impairs function, and causes distress and people have the right to retreat from that source of distress.
This is such an important issue, I think it really has to be high up on the list.
Okay, let me turn to number five, which is “Removing barriers to access”.
Mary Doherty made some interesting points in her video about the forms of access. It can be physical things like using the phone, or making an appointment, which is a very effective barrier to health care. But it also can be about interacting and communication, or struggling with the physical environment in which an autistic person might find themselves.
It’s also about the loss of executive function, which makes organisation and planning very difficult.
So, if an appointment gets cancelled then you forget to rebook it. However, she stresses there are simple things that can be done.
Understanding and training, awareness of the barriers, reasonable adjustments.
And the last point, though, she made, is interesting, is to change the culture. And she herself being autistic, made the point that autistic health care providers do not disclose their, ah, condition (let’s call it that.)
And then we had some discussion about that in a session I attended, the difficulty that people face if they do reveal the fact that they are autistic. It would be so helpful if healthcare professionals who are autistic are able to openly discuss that, and that would be enormously helpful then for the autistic people who are seeking healthcare.
So, someone has suggested that the NAT guide should be turned into a moderation standard that services could apply for, and that will obviously, we’ll have to leave that with NAT.
The reply is that NAT doesn’t have the resources to do that alone, but is open to a discussion of possible partnerships to do that.
We had a discussion about risk.
One of the problems for reasonable adjustments from organisations is: Firstly, they don’t really understand what reasonable adjustments can be done that are fairly straightforward.
And we’ve come across the issue of risk averseness, and the mindset is for risk management. And this obviously prevents change because they’re concerned that, by removing barriers to access, or removing barriers, then people will be put at greater risk.
And the final issue, which prevents reasonable adjustments is people’s confidence that they already know all about autism, because they’ve done some autism awareness training, and therefore there is no need.
These reasonable adjustments, according to Charline, “maybe we need to change the term and call them something like ‘person-led adjustments’. The ‘reasonable’ doesn’t really tell you very much. ‘Person-led’ tells you very clearly where the need and where the necessity comes from.”
Okay number six, please, “Fighting stigma and discrimination”.
Well, again, this issue of disclosure in the workplace came up here, as well. It can be difficult when people who are autistic disclose their autism in the workplace, then the immediate question can be, “what can’t they do?”, rather than, “what can they do?”
There’s an issue here around multi-factor discrimination, Autistic and BAME individuals, and a suggestion that NAT should engage with BAME organisation.
That advocacy needs to be independent, so that people can make complaints without fear of discrimination. And that families have important information to add, and they need a platform to contribute.
This came up in the in the previous setting about young autistic adults who are now regarded as ‘independent’ individuals, in the legal sense, still, really need huge family support to make their needs known.
We had some discussion about the strengths of autism as a means of combating stigma and discrimination.
There’s a concern that seeing autistic people in work in professional organisations does not necessarily transmit to autistic people with severe learning difficulties, for example.
However, there’s a voice that this can translate across different segments. and that you will need the autistic voice, regardless of the role of what they’re doing. And if that autistic voice is coming from people who are in professional situations, then that’s no bad thing.
“Defining strengths,” from Sue Fletcher-Watson, “needs to be defined in a person-led way, not in a capitalist definition.” By which she means that a person’s strength should not be judged by how much they can earn, and how much they can contribute in income tax. So, we need to get away from that, it should be person-led.
Strength can also be seen even from diversity itself. The very diversity of autistic perceptions is a strength.
Although we need to fight back against the kind of ‘Rain Man’ definition of what an autistic strength is. Not everyone can do sums really, really, well.
And there may be a role, particularly amongst young people, of those who have autistic parents, in helping them through this.
People just need to be treated humanely.
And, the other last point about strengths is that recognition of strengths and promotion of autistic strengths should not be allowed to be used to divert away from support needs.
Right, more on this. I think I’ve got most of that…
Ensure contracts, when commissioning services, require equality and not exclusion, i.e., autistic children are within the mandate of CAMHS.
Ensuring that service commissioners of funding are actually listening to autistic people in a non-tokenistic way to review their services, particularly autistic people who are connected to the wider autistic community.
I think otherwise I’ve got all the points there.
So let’s go to seven.
I think it would be hard to listen to Tomas Clayton’s video without getting tearful. His stories of restraint in hospital settings were really shocking. He was humiliated, he was treated cruelly, and what was even sadder, is he accepted that as normal at the time.
Now admittedly this might be some time ago, and he was generous enough to say that he’d sometimes met people who helped him a lot. Who found him ways of not getting overwhelmed, helping him keep calm and avoiding meltdowns, and calling the police, and being restrained.
One of the points he made which doesn’t seem to have come up is the – although we’re talking here about recognising behaviour as distress – that the way that was managed was not only by physical interactions or physical interventions from staff, but also through medication, some of which was inappropriate.
And this caused additional stress for Tomas by creating within him mental symptoms, which are entirely due to the adverse effects of the drugs, which are inappropriate.
Staff were not sympathetic to his attempts to describe his effects as due to the drugs, and it was only when his medication was changed – and for reasons that are not clear – that these symptoms then cleared up.
So, this is a very difficult area.
Someone said, “this is everything, this is fundamental. Recognising the impact of stressed caregivers transactionally affecting people. Seeing the need for professionals to step down from the pathologising language, and recognising that ‘challenging behaviour’ has become pathologising in itself. We need to move away from the idea of the person being the problem. As soon as people focus on behaviour, we miss the person.”
And that’s very similar to a comment in the session that I addressed, coming from Fiona, that “by focusing on the behaviours you lose empathy with the person.” It’s exactly the same thing.
So, “we need to ensure there are autistic people in the professional team to help understand what is going on for an autistic person who is less able to advocate for themself. Especially to help identify the whispers before the shouting happens.” That’s such a good expression.
Okay, on to number eight please.
From Christine Lenehan, she’s one of the few people I think to make the point about the impact of resource limitation. And she made the interesting statement that “we move now from preventative care into crisis mode, because of the lack of resources to support people at earlier stages of having problems.”
So, people agreed with this, finances squeezed. We’ve moved from specific autism intervention to more general mode
or more crisis intervention and we’re in danger of resource rationing.
Tim made a point about EHC Plans and pressure on children’s services, or educational services, rather.
The difficulty that it is to get an EHC Plan, because, of course, the financial implications of providing those for children in education.
Right. On comments coming from the workshops, thinking about intersection
between care for autistic people and support for the elderly:
“What happens when autistic people need to go into care homes? The autistic needs become invisible and they just become an elderly person. There’s not a great understanding, and a real need. Mishandled transitions for autistic people cause distress and precipitate crises.”
So, this transition to becoming an old person and going to a care home is another one that needs to be added to the list. It clearly doesn’t get mentioned as much as the other obvious ones, like school transitions, or school to work, for example.
“For us autistic elders, there is currently just about nothing in place, almost no research, plans, accommodations, strategies, and funding etc. The lack of ongoing specialist social work support – as in, having a named social worker – has disappeared, and episodic care has come in. And this has really led to a deterioration in the planning and continuation for individuals.”
Okay, number nine. “Ensure ongoing practical autism-specific staff training.”
Ah, training! Always a favourite issue. Rachel Moody said – it was asked: “Do staff in health and social care services have knowledge and skills to empathise with autistic people?”
“No.” she said. “It’s the luck of the draw, and often it’s more about natural ability than the effectiveness of the training.”
Everyone says it needs more than ‘awareness’ training. Awareness training is autism facts, and it inevitably leads to autism being regarded as a deficit condition. So, that’s deficit-based knowledge of autism, rather than an attempt to bridge the communication gap.
She made a very interesting point that people need to try much harder, because autistic people are already doing their hardest in very difficult circumstances, and either staff are not aware, or they don’t care.
So, we come back to this point that autism training needs to be autistic-led and designed.
Charlene Tate had to be restrained, I’ll use the word ‘inadvisably’ here, she’s decided that we need to rethink the whole approach in both education and social care settings. There’s too much emphasis on what autism is – which reiterates the point made by others – and not about how training is used as a communication tool with autistic people.
So, now the other points made:
“The worker needs to be more the focus of training, not just training about autism, but training on how to be a good support worker, and how to manage their own stress. It needs follow-up training, communities of practice, regular supervision to embed training.
“Just training is not enough. It’s how that is implemented, and supported in practice. The best way to train people is to have ongoing support from a colleague who really gets it, such as an autistic colleague, but many autistic professionals feel unable to disclose because of the extent of the stigma.”
Exactly the point that was raised earlier.
“It also helps for practitioners to spend time with a range of autistic people.”
That’s a good idea to recognise that all autistic people aren’t exactly identical.
And, “the importance of training in human rights, mental capacity, safeguarding, and genuine empathy with autistic perspectives.”
I think Damian made the point that training lacks follow-up on impact, which is also reiterated here.
So training is one thing, but finding out whether it works or not, and then adjusting to that, might be a useful idea.
Okay finally, I’m on to number 10, with five minutes to go.
Martijn Decker gave a video on accepting difference and supporting positive autistic identity.
He gave some very practical advice on what people should do:
Let go of your idea of ‘normal’. Listen, and believe. Be pragmatic. You know, if an autistic person is not on board with what you’re proposing then there’s no way it’s going to work, and you have to ask, who is that a problem for? Is it for the presenter? Or the autistic person?
Don’t fix things because they are autistic.
Difference is not a deficit.
And please, it’s not always about therapy. It can also be about fun and enjoying yourself.
He made a point about the need for social groups, and social interactions for autistic people with other autistic people.
And that the worst thing you can possibly have is a neurotypical, a non-autistic person leading a social group, which he likened to a woman’s group being led by a man, which is patronising.
That’s rather amusing, I thought.
Autistic space is really important, and he emphasised this also in the workshop itself: With autistic people in charge. Where autistic people can be themselves.
Two points here, I think, came up. One of which I might need further explaining.
“Autistic staff working in social care services will help in a well-rounded picture of autistic identity.” I think we all know that now.
And then, this is a tough one: “The toughest one to tackle with commissioners” – about presumably accepting difference and supporting positive autistic identity – “is their obsession with outcomes.”
Perhaps in two minutes someone could explain to me exactly what that means, and what the problem is?
Yo:
I think it was Charlene Tate who made the point, and she’s had to leave slightly early. I heard her make it, so I’ll try and explain further.
I think what she was saying is that, for care providers, it’s difficult to sell commissioners on the value of activities that involve supporting autistic identity because there isn’t a measurable outcome that they can tick a box from.
Ian:
Okay, that’s very clear, thank you very much indeed.
Well, that’s my summary and I don’t know what it means for NAT that they had to ask a neurotypical to do the summary for the forum, but I’ll accept that as a compliment of some kind. I hope that was helpful.
We’ve got lots of notes here, there’s things we can work on.
Yo, do you want to say anything about outputs from this meeting?
Yo:
Just to say that please bear with us, but in due course we will hopefully publish the videos that we sent out to you in advance of this forum on the NAT website.
We will also be making available the recordings of the plenary presentations from this morning, and this summary, and hopefully a written summary of the outputs from the forum as well.
It might take a little while for us to get those up on the NAT website, but we will do that and try and send an email around everyone with some links when we have managed that.
Ian:
Very good. Well, I think I’ll hand over to you then, Yo, to finish up. Since we are now out of time and I’m out of breath.
Yo:
Okay. Thank you very much to Ian for doing a marvellous job of processing, and synthesising, and putting forward a range of comments from the workshops, at a speed that autistic processing might have found a little bit challenging!
So, thank you very much for that.
Thank you also to everybody who has come and participated in this forum.
Please do distribute the NAT guide everywhere that you can, because we would really like to see it influencing commissioning practice, and having an impact on the whole approach to care and support for autistic people at all ages, and right across the spectrum.
So, thank you to everyone for coming and for everyone who’s helped make the forum a success.
Thank you very much everyone, bye!
Ian:
Bye!
Note: Written summaries of each of the forum discussions were also provided, alongside the videos, on the full NAT Forum 2021 page here.
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