Autistic UK September 2020 Newsletter


Autistic UK News

For a PDF copy of our newsletter, please click here.

What We’ve Been Doing

We are still currently working on creating a robust strategic plan for Autistic UK CIC to ensure that the work we do best serves the Autistic community. The world is still in a period of uncertainty, and as an Autistic board, that has meant a lot more adaptation and change than we are used to. However, we are confident that we are leading Autistic UK into a future where we can help steer real positive change for our community, ensuring the Autistic voice is heard.

Our director profiles are now live on the website and were shared across our social media platforms earlier in the quarter. For those who missed them, you can find them here: https://autisticuk.org/about-us/our-people/our-directors/

In addition to chairing our board, Willow Holloway got to the final round of the ACUMEN UK Fellowship programme and scored in the top 50 of hundreds of applicants. We already knew that we had an excellent colleague, but to reach this stage of such a renowned leadership programme is an incredible achievement, and we are all so proud and privileged to work with her.

Bitesize News

* We have had an admin restructure in our Facebook group—Neurodiverse UK—and have updated our group rules and procedures to ensure that it remains true to its purpose—to be a place where Neurodivergent and Neurotypical people can discuss matters relating to Neurodiversity. If you’d like to join our group, please do so by following this link.

* We have been approached by a number of our supporters to enquire about membership packages. We are still in the process of planning what these would ‘look like’, but please be assured that we will post information about how to join once this has been finalised.

The Oliver McGowan Mandatory Learning Disability and Autism Training

While we gratefully acknowledge all of the hard work all of those who campaigned for, and demanded, formal autism and learning disability training to be nationally available, we shared the concerns expressed by the Autistic community in the selected companies who will be drafting and delivering the training.

Two of our directors, Julian Morgan and Kat Williams, wrote a joint statement outlining their (and the community’s) concerns, which can be found in full on our website here.

We followed this by sending out an initial survey to gather the views of those within the autism community—including parent/carers and employees. This was closed at the end of August to allow us time to review the responses and provide a report to the community and to those companies involved in the training.

We have published the results on our website and the NHS have a copy and are distributing it to relevant parties.

Underdogs


The Underdogs series is set in a dystopian series set in the aftermath of a military coop in which the population of Britain are imprisoned inside giant walled citadels guarded by cloned soldiers.

The only people who managed to avoid capture have banded together to make The Underdogs. Most of the Underdogs are Neurodivergent teenagers who escaped the attack on their school.

Find our reviews of both books on our website here.

Interview with Chris Bonnello

At the end of June, we were lucky enough to interview Chris Bonnello, owner of Autistic Not Weird and author of the Underdogs series. We discussed the second book in the Underdogs series—Tooth and Nail—and what it was like to release a novel during lockdown.

From thirteen-year-old Sonic the Hedgehog fanfiction writer, to world renowned Autistic speaker and author, Chris’s answers were packed full of tips for aspiring authors, recommended reads from other Autistic authors, and details of his writing process, from thought to book via the publishing process.

You can find the interview on our website, including a captioned video and full transcript.

Both books can be found on Amazon: Underdogs & Underdogs: Tooth and Nail

Welsh National Autism Team—Post Diagnosis Booklet

We’re currently working with the Welsh National Autism Team as they reinvent their post diagnosis booklet.

The previous version was reviewed by a number of Autistic people who felt that it didn’t provide enough useful information, and that the language was outdated and sometimes unhelpful. W-NAT have listened to this feedback, and approached us to provide detailed information as to what works, what doesn’t work, and the style the booklet should take. We look forward to building on our first meeting and helping them deliver an information pack which is supportive, useful, and positive.

Together for Children and Young People

Willow attended the Together for Children and Young People consultation group set up to ensure that appropriate mental health support is available for Neurodivergent children and young people in Wales. TCYP focus on early support (though we reiterated the dangers of abusive interventions such as ABA), Neurodivergent conditions, and aim to use a multidisciplinary approach to supporting those who access their services.

Our input was greatly valued, and we will have a standing invitation to all future consultations. This will ensure that ND voices are heard when creating support programmes, rather than the focus being entirely on the views of NT parents.

Latest Work in Wales


In our last newsletter we advised that we had written to Kirsty Williams, Education Minister, regarding the lack of clear guidelines for schools concerning the return of Autistic and otherwise disabled pupils. We received a response which didn’t reflect what was being said by our stakeholders, so we launched a survey regarding hub provision for statemented children during the coronavirus lockdown. The report created from the responses was sent to Kirsty Williams, who has since advised that the information would be used in future versions of the guidance released by Welsh Government.

*

We have been attending Disability Wales focus groups to feed into their Disabled People’s Manifesto ahead of the 2021 Senedd elections.

If you’re in Wales, please complete their survey which is being used to get experiences and opinions of life as a disabled person in Wales, and what representatives can do to create a more equal society.

Who Else Do We Work With?

We have developed good working relationships with a number of organisations in addition to those mentioned in detail in this newsletter. These include:

* Autism Wellbeing
* Fair Treatment for the Women of Wales
* Cross Party Disability Forum
* NHS England as Experts by Experience
* Mark Blake & Sussex Police

Trace Test & Prevent—Tips for Call Handlers

Cadno Coch was approached by one of his contacts within Besti Cadwaladr University Health Board rgarding tips for Trace Test and Prevent (TTP) call handlers when they need to contact Autistic people who may have come into contact with someone who has tested positive for COVID-19.

We provided a list of tips under three headings: Avoid, Do, and Understand which have been very well received, and it has been requested that they be shared with other NHS trusts and government offices.

We hope that the tips ensure that Autistic people are given more time to process the information being given to them and are treated with understanding and dignity during a call which could be incredibly anxiety provoking.

Current Research Involvement

We have been working with Cranfield University and the Ministry of Defence on the creation of a study to ascertain the effects of lockdown on Neurodivergent people, in particular those who previously worked in an office environment who worked from home during lockdown.

This is an exciting potential social research project focusing on the welfare and wellbeing of Neurodivergent people during the coronavirus lockdown, which aims to create a working framework from the findings, along with a toolkit for employers of Autistic people. Working from home is a frequently requested reasonable adjustment for Neurodivergent people, and this study, should it go ahead, aims to quantify and qualify the benefits and potential negatives to this style of working for the ND community.

We are excited to have been invited to contribute at such an early stage, and hope that this ensures that the study is of benefit to the wellbeing of our community.

Future Research

Autistic UK welcomes invitations to collaborate on research projects which will be of social benefit to Autistic people across the world. It is important that researchers and universities are guided by Autistic people, and that research needs are steered by the community they are designed to serve. Work by PAS Nederland demonstrates how effective this approach is, and we hope to promote this way of working here in the UK.

Focus Groups

Our first focus groups regarding the impact of COVID-19 went ahead in July; thank you to all who attended.

We had two really interesting conversations, and details regarding the difficulties faced by Autistic people during this pandemic will help us with our working strategy, and will also be (anonymously) fed back into work we do with government, health, and other legislative authorities.

Our next focus groups have been planned, and invitations will initially be sent to those who have completed our expression of interest survey, followed by a general invitation being posted on our website and social media. The first meeting each month is reserved for Autistic attendees only.

Dates are: Are We Being Heard (Autistic Rights): 16/09/2020 & 24/09/2020; Mental Health 02/10/2020 & 15/10/2020; Education 12/11/2020 & 17/11/2020; Autistic Culture 06/12/2020.

Future Plans

Advisory Groups
In addition to our Focus Groups, we would like to recruit members to our Advisory Groups. These groups would meet quarterly and will feed into the board directly to steer our work and ensure that Autistic voices are being heard, and we’re working towards a united goal.

Easy Read
We are learning the process of creating Easy Read documents and are working towards ensuring that key information on our website is available in Easy Read format.

Focus Groups 2021
We are aiming to run collaborative focus groups in 2021 and are in the process of contacting trusted organisations to work with us to ensure intersectionality in groups (e.g. LGBTQ+) is facilitated by those across the intersections.

Adverse Experiences
We are joining a number of working groups, including Adverse Childhood Experiences and Domestic Violence, which aim to uncover Autistic experiences.

It is thought that Autistic people are at a higher risk of being subjected to ACEs and/or domestic violence, and we want to ensure that those subjected to them are fully supported by people who are trained to understand and facilitate the difficulties Autistic people can have in accessing support and therapies.

Stay in Touch


For more information about what we do here at Autistic UK CIC, or to enquire about our range of training and upcoming events, you can contact us via:

Post: 49 Station Rd, Polegate, East Sussex, BN26 6EA

Email:
General: info@autisticuk.org
Media: press@autisticuk.org
Training: autisticallyspeaking@autisticuk.org
Facebook: @AutisticUK and @AutisticUKCymru
Twitter:@AutisticUK
Website: www.autisticuk.org

Autistic UK CIC

Autistic UK is an Autistic People’s Organisation (APO) – an organisation run by Autistic people for Autistic people. Autistic UK aims to advance the interests of all autistic people and those with related Neurodevelopmental conditions. It aims to promote and protect the civil and human rights of the Autistic population and campaigns for the enforcement of the legislation which guarantees our rights. It aims to increase understanding of Autistic people, our differences and needs, and works to improve services, facilities, and conditions for Autistic people.

It does not seek to represent Autistic people, rather it aims to ensure that Autistic people can represent themselves. It seeks to establish the mechanisms and processes which will empower Autistic people to be able to represent themselves.

Autistic UK recognises that many Autistic people are unable to represent themselves (or will experience great difficulty in doing so) and recognises the importance of ensuring effective advocacy so that these Autistic voices are heard and their wishes for their lives enacted.

Autistic UK believes that carers, family members, friends, and supporters of Autistic people play an important role in both our everyday lives and as allies in the fight for our rights. It welcomes these non-Autistic people as network associates. Autistic UK believes in strength through unity and that there is much common ground to be found.

Copyright © 2020 Autistic UK, All rights reserved.


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