Following on from the announcement of the delivery partners in July of this year of the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers, there has been a process by which Autistic representatives were able to apply from the NHS England Learning Disability and Autism Advisory Group to join the Strategic Oversight Group led by Skills for Care, Health Education England, and the National Development Team for Inclusion.
After an application and interview process, Autistic UK is proud to announce that one of our Directors, Julian Morgan, as a member of the NHS England Learning Disability and Autism Advisory Group and the NHS Citizen’s Advisory Group, was appointed as one of two independent Autistic members of the Strategic Oversight Group.
Julian will be attending his first meeting of the Strategic Oversight Group at the end of October, and is looking forward to being able to put our wider Autistic community’s views and concerns forward to those responsible for its implementation and evaluation.
To this end, Autistic UK will be continuing its focus groups and surveys so that Julian is fully informed and up to date with the wider Autistic community’s wishes and concerns. Through this we hope to ensure that your voices are heard directly by those who need to hear them. Our next survey will be shared across our platforms in the next few days, with the questions being based on the answers received in our initial survey. The report generated from our initial survey has been passed on to the Implementation and Evaluation Partners via NHS England.
As one of Autistic UK’s founding principles is that we do not seek to speak for Autistic people but provide a platform for their voices to be heard, we encourage all of you who read this to grasp this opportunity to have your views put before those decision makers responsible for the creation, implementation and evaluation of the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers. In turn, we will also use the discussion points from the Strategic Oversight Group meetings to inform our future survey questions. In particular we are seeking answers from those whose voices are normally not heard, especially those of you who also have a learning disability and those with high support needs.
We will also be putting out surveys which focus on intersectionality, for example, LGBTQIA+ and Black and other Ethnic Minority communities. This is to ensure that health and social care inequalities faced by those further marginalised groups are specifically highlighted, and that feedback isn’t based on one subsection of the Autistic community.
This will also include input from the official partners regarding the areas which they would like to consult with you on, which should give our community an idea of their understanding and focus. These will always be put out separately and be clearly identified as questions being asked by those organisations. Please be assured that all of your answers to these questions will be passed on anonymously, but word for word.
As ever, the results of all of these surveys will be published on our platforms as soon as they are available.
This article was written collaboratively by Julian Morgan and Kat Williams
To start, Autistic UK would like to add a grateful acknowledgement of ALL those of us who have been pushing, campaigning and demanding formal learning disability and autism training to be nationally available. The announcement made today that all health and social care staff in England will receive mandatory autism training is the outcome we were all rooting and campaigning for, and is – on the surface – a huge step in the right direction.
But as ever, the execution from the NHS and Government never fails to disappoint.
Though medics may not be required to take the Hippocratic Oath, the statement “first do no harm” should still apply. The Oath was replaced by the General Medical Council’s (GMC) “duties as a doctor,” which many universities use as part of their medical graduation ceremonies as a ‘pledge’ to uphold, and all doctors must adhere to.
Now the Autistic community in England (not the UK as headlines suggest) finds out the ONLY autism related organisation that will be implementing ‘Oliver McGowan Mandatory Learning Disability and Autism training for all health and social care staff’, as announced, is one which has a history of exploiting those Autistics who contributed to its past online training packages. It’s also rather short of paid Autistic employees too; unpaid ‘volunteers’ and ambassadors it has in multitude. Other contributors include learning disability charities – all of which are parent focused or led – and this news has sparked a high level of concern within the Autistic community.
The “duties as a doctor” states that medics should “Never abuse your patients’ trust in you or the public’s trust in the profession.” Handing a training contract over to a parent-focused charity with such an atrocious history of death and neglect in their own care homes has deftly broken that trust in one fell swoop.
Medics must “Listen to, and respond to, their concerns and preferences,” yet they refuse to listen to the Autistic community who, for years, have been telling them that training should be directed and delivered by Actually Autistic people who have lived experience. The NHS employs lived experience advisers in many areas, yet autism seems to be a category in which “mother knows best.”
One of our Directors – who also sits on the NHSE Advisory group on Learning Disability and Autism – was promised that the NHS-wide training on autism and Autistic people would be co-produced and developed by lived experience advocates. Were they actually listening, or just saying things they thought we would like to mollify us?
They promised that what we referred to as ‘The Usual Suspects’ would not be their go-to choice for autism as they were heavily biased in their experience towards learning disabilities, and had no real experience of Autistic people other than ‘as learning disabled’ and were wedded to the medical model of care.
‘NO!’ they said, ‘Local implementation! Lived experience all through. Not all learning disability charities doing it…’
Despite promises to stop the standard practice of treating Autistic people as learning disabled, we now have a selection of learning disability service organisations telling medics and care staff what Autistic people need, without any meaningful Autistic consultation or input. We asked for separate, independent, Autistic advocates and organisations to be included in designing the bid and training, yet the infantilising of Autistic people (especially those with learning disabilities) means that it is presumed we are unable to know what we need and desire, let alone deliver this training ourselves. Of course, our betters know better than we do about what Autistics want.
The NHS has broken its pledge that ‘lived experience advisors will be used in all decision making and implementation processes in all areas.
What happened to Nothing About Us Without Us?
The chances of Autistic people who do not “toe the line” with the service provider in question contributing to this massively important work, has basically slipped to zero. Thanks NHS and Government. Notice how Autistics do not even make the headline on this official announcement from a national provider to the Care Industry?
The GMC’s duties of a doctor also states that they must “Work with colleagues in the ways that best serve patients’ interests.” We’re going to go a little off the path with this one, but realistically colleagues does not solely include other doctors. This includes the trainers, the administrators, the managers etc. Working with trainers who have demonstrated that they do not serve Autistic patients’ interests, yet again, goes against this ethical guidance.
Medics must also “Protect and promote the health of patients and the public.” They cannot protect the health of Autistic patients while simultaneously working with an organisation which has actively harmed Autistics, particularly as they then attempted to cover up said harm. Do they think we have forgotten Mendip House? Forgotten the cover up? This is especially pertinent as the NHS and Government’s working relationship involves them teaching medics and care staff how to better care for a portion of society they harm.
How do you feel about an organisation that still sends schoolchildren to secure units and ATUs telling care staff how to look after autistic children and adults?
An organisation that uses and promotes ABA and PBS for all? (If you don’t know why that’s a bad thing, please read this article written by Kat Williams on her site)
Have you forgotten the whistle-blower(s) and the denials of responsibility?
Do they think we have forgotten the abuse?
Does their track-record demonstrate that they’re up of this job? That further deaths will be prevented?
This is the organisation that will now train others to care for YOUR loved ones. A fine example of vanity and hubris above and beyond the call.
This organisation veils itself using the Social Model of Disability in its public image, yet follows the Medical Model of Disability behind closed doors. The thought of an organisation that treats the Autistic community as an income stream is not representative of that community. Its unwillingness to advance the Autistic cause through meaningful coproduction (rather than public-facing tokenism) is chilling. This is an organisation that practices ABA (as are the others which are involved). This organisation incarcerates children and abuses its charges. The NHS has already had ABA/PBS snuck through the back door through the Transforming Care Programme, and this new contract will see systems that Autistics have been campaigning to reform move back into behaviour-led thinking led by organisations whose training will be coloured by their own negative opinions.
The GMC code also states that medics must “Take prompt action if [they] think that patient safety, dignity or comfort is being compromised.”
Therefore, to the NHS and Government, we invite you to take prompt action now. Your Autistic patients’ safety, dignity and comfort are all being compromised with this union.
“You are personally accountable for your professional practice and must always be prepared to justify your decisions and actions…” Can you justify this?
Feel free to express your opinion to the National Autistic Society, Mark Radford at Health Education England, NHS England, and Minister for Care Helen Whately.
Why a Gold Infinity symbol?
Over the last year or so, I and a few others have been ghosting our way around the online autistic community with good intentions. Not to be all stalker-y here, honest, but we wanted to find a constant thread that the authentic, Actually Autistic voice spoke. I’m the one who got the job of sticking his head above the parapet and revealing our efforts and their results. I always get the short straw; Is it ‘cos I is Autistic?
This is not intended to be just for April. The idea is to have a common thread that runs through all groups, advocates and supporters that was easily recognised, different and came from the autistic community, not from those who think they speak for us.
The Gold Infinity is for use on ANY work, event, campaign, fund raising, whatever! It is meant as a symbol of authenticity, declaring support for acceptance all year round and stating this message came from an authentic autistic voice. We can self-police those who may abuse it. Social Media is a wonderful thing…
So how did we get here?
The Âû suffix has become quite common in its use as it uses the Autis(tic)(m) = Au* = Gold idea to self-identify and as a community had started #LIUG, Light it up Gold, in response to Auti$m $peak$ (A$). This was not the only use of Gold or Au we found, but it was the most common and seemed to have struck a loud chord in many groups and individuals in other countries as well as the UK.
*Au is the International Chemical Symbol for Gold from the Latin name Aurum.
The only other colour in serious contention was the Red Instead idea, also formed as opposition to A$, but without the larger base of support Gold had acquired. Nor did we really find a reason for red past expedience, its opposition to blue (A$) and it makes for a great hash-tag. There was no direct symbolism with Autism we could find amongst its supporters.
I should take the time to make it very clear that the idea here is not to replace or ignore others efforts and campaigns and symbols. We support them for their commitment to acceptance and the work they do to achieve this. We ALL contribute to the whole; we ALL support efforts in raising awareness of Acceptance from any who support Actually Autistic people.
The use of the infinity symbol came from the growing popularity of it in spectrum colours to promote Neurodiversity. The idea of endless possibilities and untapped potential resonate through this symbol providing a simple and recognisable concept in one.
Autism is itself a spectrum, but we were looking for a unique identifier (without needing to ‘cure’ it). So the idea of combining the two came to the fore. If Autistics use Gold, then other Neurodiverse communities can use their choice of colour too. Slap it on an infinity symbol and it makes up part of the Neurodiverse Spectrum.
We hope this concept is also pleasing to the other unique Neurodivergent communities out there.
At the end of the day, you can design your own version and use it how you wish as long as it is an authentic voice using it to promote acceptance and abides by the guidelines. It is Gold and it is an infinity symbol. It is for Acceptance.
Autistic UK and other organisations and advocates have banded together to support ‘Going Gold’ for Autism Acceptance.
However, there are guidelines…nice and simple ones.
- You use the gold infinity symbol on ‘Going Gold’ campaigns and fundraising stuff. Design and size does not matter just as long as it is gold and an infinity symbol. I have put Autistic UK’s version, which reflects our logo, below as an illustration, design your own if you like.
- Call for Autism Acceptance. Awareness is spreading and UK local authorities and housing associations and Service Providers etc have finally got the hang of awareness, so time to turn to the next, Acceptance.
Please Note; The autistic community does not support ANY abusive, quack ‘cures’ like MMS/CDM, GcMAF, Chelation, turpentine, ABA (Dog training for kids-see research on PTSD below) or any other abusive therapy used to obviate our autistic identity. If you support any of these things, please do not use the gold infinity symbol as you will be stealing our voice for your own purposes and not benefiting autistic people at all.
Finally, and not a guideline but a constant; No one person or group owns this campaign.
It is a gift to all user led groups, autistic advocates and allies whoever they may be from a collective of autistic groups and individuals. This symbol comes from a collective autistic voice and is given freely to the autistic collective out there.
So grab your gold infinity symbols and start pushing. Have a Gold theme to your events, Go Gold and spread the word, wear gold and share on social media, it is up to each group and individual to spread the symbol, message and colour of acceptance as they wish.
There are no political boundaries here, so anyone in any country who supports Autism Acceptance is invited to participate.
One last request; please do not put your gold infinity symbol on a puzzle piece or combine their use. We don’t like puzzle pieces. Like awareness, they are sooo last year!