The Loop: Summer edition

AUTISM ACCEPTANCE WEEK HIGHLIGHTS

ACCEPTANCE MATTERS

TRIBUTE AS TRUSTEE CHAIR STEPS DOWN AFTER 21 YEARS

Plus… Notes from our CEO, Save the Dates and more.

Notes from our CEO

Our Autism Acceptance campaign made headlines this year as we focused on the theme of Everyday Equality.

John Phillipson Chief Executive Officer

But behind the scenes, too, we were taking action to ensure that our own organisation lives up to the commitment to listen to autistic and neurodivergent people.

Our Board of Trustees reviewed our governance arrangements, and agreed to some far-reaching changes to how the Society is run. As part of this, we recognise that we need to formalise how we ensure agency for autistic and neurodivergent people.

So we will make sure we involve autistic people in the Board and related committees that we are setting up, so they have a real voice in the future of NEAS and how it’s managed.

For this I’m very grateful for the support of outgoing chair Gavin Bestford, who has dedicated the last 21 years to advocating for autistic people as a trustee and then Board chair.

It’s the end of an era; Gavin has been chair all the time I’ve been here, and we’ve worked on a lot of projects together. You can read our tribute to him on pages 10-11.

I’m delighted that Dr Rakesh Chopra, a trustee for a number of years, has agreed to be the new chair and I’m confident he and I will work closely on the changes agreed by the review.

Meanwhile, we’ll continue with our ground-breaking services to help overcome the barriers autistic and neurodivergent people face in their everyday lives – from coping at university (page 14) to getting a job (see our DiversityNE project on pages 12-13).

Thank you for your continuing support for our work.

John Phillipson

Contents

Save the Date…

We’re on the countdown to our Acceptance Matters

Virtual Conference and we’ve put together a list of events you don’t want to miss.

Autism Acceptance Highlights

Autistic voices and experiences were front and centre of our Autism Acceptance campaign this year, which focused on the theme of Everyday Equality.

Thriving outside of the mainstream

We spoke to 13-year-old Z and their mum Nic King about Z’s experiences in education and what they would like to see changed for all autistic pupils.

Tribute as trustee chair steps down after 21 years

Gavin Bestford has retired as chair. He tells patron Peter Barron what drove him to spend 21 years fighting to improve the lives of autistic and neurodivergent people.

Spotlight on… Student Mentors

Izzy Johnstone and Sophie Maddison are specialist student mentors employed by NEAS. They meet the students regularly and help them navigate both the academic and social side of university life – from preparing for exams to making friends.

Highlights of The Quarter

Hundreds walk in support of autism acceptance and James Cook Hospital became the first healthcare setting in the North-east to receive our Gold Autism Acceptance Award – it’s been another busy quarter.

Save the Dates

We’ve got a busy summer ahead of us… from the return of our summer fetes to our annual bike ride. Here’s a round-up of the exciting events taking place and the information you need on how to join Team NEAS:

London to Amsterdam Cycling Challenge

Friday 26th May

As part of our annual Autism Acceptance Campaign, we are hosting an online conference, with autistic speakers. Topics covered at the conference include gender and identity, autistic mental health, autistic mistreatment, and education.

Tickets cost just £15

Click here to book your ticket.

As part of our annual Autism Acceptance Campaign, we are hosting an online conference, with autistic speakers.

The aims of the event are to:

• Make a statement that listening to the experiences of autistic people is vital

• Educate people about the lives of autistic people (dispel some myths)

• Contribute to changing the negative narrative of autism

Summer Fete at New Warlands Farm

• Recognise and celebrate diversity and neurodiversity in all people

• Discuss the barriers to acceptance and the reason for them

• Inspire professionals to change through constructive education

Saturday, 15 July from 10am – 3pm

The products on sale are handmade by the children, young people and adults in our services. There will also be an opportunity to pick up our exclusive Mackenzie Thorpe merchandise.

Find out more at: www.ne-as.org.uk/events

24 – 29 August 2023

London to Amsterdam

Back by popular demand… It’s our annual cycling challenge! This year’s event will take place over six days (three of those will be spent cycling) and is set to be our biggest cycling challenge yet, as a team of riders will be heading from London to Amsterdam.

Every rider will receive a bespoke Team NEAS cycling jersey, plus support on the ride from a vehicle driven by a member of the team carrying supplies, spares and luggage from point to point. Bookings can be secured today for a £50 deposit.

Registration is now open at: https://www.ne-as.org.uk/Event/qcc

Great North Run

Sunday 10th September

The World’s Greatest Half Marathon is back! Entries cost £50 per person, and you’ll be asked to raise £400 for NEAS. Sign up today to get your guaranteed place on the start line as part of our team, which will also include a free Team NEAS running vest, a training and fundraising pack plus support and advice throughout the build-up to the run to keep you going.

Click here to register.

If the thought of taking on a half marathon seems daunting, we have a brand-new event to help you work your way up to the big race.

Find out more about our Couch to South Shields event.

Autism Acceptance Highlights

Autistic voices and experiences were front and centre of our Autism Acceptance campaign this year, which focused on the theme of Everyday Equality.

Our autistic and neurodivergent contributors spoke about the barriers and opportunities they faced in education and called on schools and universities to have a better understanding of difference.

And our Autism Activists group, made up of young people aged 9-17, created an amazing video about how they perceive the world and what changes they would like to see.

Their stories made a splash in the local and national media, including the Chronicle, the Northern Echo, the BBC and the Daily Mirror.

Meanwhile, more than 150 schools signed up to receive our Primary and Secondary Teachers’ Toolkits to promote the message of autism acceptance in the classroom.

Businesses across the region also registered for our first ever Employers’ Toolkit, to support them in developing a more diverse workforce and inclusive environment on their sites.

our services held their own Autism Acceptance events, creating poems, films and artwork around the theme of It’s OK To Be Me.

And everyone came together for our annual Walk for Acceptance at Herrington Country Park on Friday 14th April which took place under blue skies and attracted almost 300 participants.

Our patron, TV presenter Pam Royle, opened the walk alongside CEO John Phillipson and the Chair of Trustees Gavin Bestford, who is stepping down from the charity’s board after more than two decades (see his story on pages 10-11).

The final event in our Autism Acceptance calendar comes on 26th May with our third virtual Acceptance Matters conference, which features leading autistic speakers on topics including the double empathy gap, gender identity and school-based anxiety.

But our Everyday Equality campaign will continue throughout the year, with health as the next subject to be highlighted.

FRIDAY 26TH MAY

SPEAKERS

SPOTLIGHT ON

As part of our annual Autism Acceptance Campaign, we are hosting an online conference, with autistic speakers.

The aims of the event are to:

•Make a statement that listening to the experiences of autistic people is vital

•Educate people about the lives of autistic people (dispel some myths)

•Contribute to changing the negative narrative of autism

•Recognise and celebrate diversity and neurodiversity in all people

•Discuss the barriers to acceptance and the reason for them

•Inspire professionals to change through constructive education

Tickets cost just £10

Tickets cost just £15. To register visit: www.ne-as.org.uk/acceptance-matters

Damian Milton Bridging the double empathy gap

Quinn Dexter Autism and alexithymia

Nurturing autistic young people

Cathy Wassell School-based anxiety: Navigating the educating system

Eliza Fricker

Lauren Osborne

Dark sky sleepovers

Katie Toner

Thriving the mainstream

Z is autistic, and struggled so much with what they call the “toxic environment” in mainstream school in Gateshead they became ill when they were 10.

Mum Nic says:

“Z was underweight, covered in hives and their mental health was poor. And I thought some of these were medical, but a lot disappeared a fortnight into lockdown, at which point you know it’s not medical because nothing else changed, just the environment.”

She took Z out of school and put together a bespoke package of home education, which includes forest school, circus school and virtual learning. The youngster has flourished: “Z looks like an entirely different human being now,” Nic says.

NEAS - How are you taught, Z?

Z – I get virtual tutoring with Gecko, a charity where all the tutors are neurodivergent, and do self-led GCSE work. I’ve just come back from forest school which is really good because you get to set stuff on fire and/or fill your wellies with water, whatever takes your fancy that day. And then I go to circus school which is very good for proprioception and basically stimming it all out.

As part of our #EverydayEquality campaign for Autism Acceptance Week, we spoke to 13-year-old Z and their mum Nic King about Z’s experiences in education and what they would like to see changed for all autistic pupils.

Thriving outside of mainstream

What are the best things about home ed?

Z – I get to do a lot of interest-led subjects. My tutor and I have been chatting and now we’re going to be 3-D modelling a character from a game I really like. I’ve done my Psychology GCSE which wasn’t even an option at secondary school, and I don’t have to do a foreign language which doesn’t interest me.

Nic – It was a big surprise to me that you can do a subject for six hours’ straight. Chopping and changing between different subjects throughout the day isn’t how autistic people thrive – it’s not hyperfocus, it’s not monotropic, it’s not interest-led.

How else is it different from school?

Z – Forest school is like a completely different universe. They treat the children like human beings and ask ‘OK, what do you want to do and how do you want to solve this problem?’ instead of just telling you to calm down. And it’s interesting – I can go in tomorrow, build a den, use a saw, and basically be free to do what I want.

I don’t dread it – I used to dread going into mainstream education. I was like ‘I can’t do this, I can’t do this’. I used to make myself sick with anxiety some days. Now I’m like ‘let’s go! Oh wait, I need to put my waterproof socks on.’

Nic – The difference for kids who are home educated is that you’re not forced to be around hundreds of people for 25 hours a week and you have friends, but if you come across someone you don’t get on with, it’s not a problem because you don’t have to see them.

But the kind of bespoke education Z has – even electively home educating – is a privilege. Not everyone can do this. Not everyone works from home. Some people are genuinely trapped in the system until either it ends or they reach a level of burnout and crisis that’s not manageable for their families anymore and then someone has quit their job.

What do you want to do in the future?

Z - To be self-employed because I have lots of things that I’m good at and have lots of things I want to do but they change each day. So then I have the freedom to be a lipsyncing aerialist one day and the next day I’m performing something else over there.

Nic – Follow that dopamine!

What message would you like to the education system take on board for Autism Acceptance?

Z – Shut up and listen! We can tell you what we need but if you don’t listen and keep telling us we’re not doing well, it’s no surprise because we’ve told you this needs to happen in order for it to be OK.

Nic – Staff in all schools should get autistic or neurodivergent-led training, and stop looking for X solution to fix Bobby who’s disturbing their class and being inconvenient to them whilst also forgetting Jenny who happens not to be disturbing their class but still isn’t all right.

I absolutely accept that we’ve had more education secretaries than hot dinners; I absolutely accept that it is a difficult job, that they are underpaid and undervalued. However, these children are not OK and the statistics around when those children become adults are frightening. If they don’t get it right, that has long-term consequences.

To read more stories around our #EverydayEquality campaign, go to https://www.ne-as.org.uk/pages/ category/everyday-equality.

Tribute as trustee chair steps down after 21 years

Gavin Bestford retired last month as chair of the North East Autism Society. He tells patron Peter Barron what drove him to spend 21 years fighting to improve the lives of autistic and neurodivergent people.

More than 30 years have passed yet tears still well up in Gavin Bestford’s eyes as he recalls the day he and his wife, Denise, were given news “like a dagger through our hearts”.

A neurological consultant had told them their three-yearold son, Alex, had “real problems” that would have a lifelong impact.

“We drove home without saying a word. It was too painful – it still is,” admits Gavin.

But that pain inspired a personal mission – to make life better not just for Alex, but for other children and their families.

And that’s what Gavin has achieved through his decades of dedication as trustee and then chair of the North East Autism Society, where he describes his mission as to provide

“the best services, delivered by the best people, to create the best lives possible.”

As the 73-year-old steps down, he looks back with pride at how, under his leadership, the charity has undergone a huge growth in services, along with more than £30m of capital development in specialist facilities.

Gavin was born in Crook, County Durham, and had a 33year career in local government accountancy, ending up as Deputy Director of Finance with Durham City Council before taking early retirement in 2000.

He married Denise in 1979. Their daughter, Laura, was born in 1983, and Alex followed in 1986. When Alex was four, a consultant at the Nuffield Centre in Newcastle told his parents that he had significant issues.

Gavin and Denise were advised to look to the Tyne and Wear Autistic Society in Sunderland – as NEAS was then called - for an assessment. Alex was finally diagnosed as autistic and offered a place at the charity’s school.

The society had been founded in 1980 due to the fierce determination of a group of parents with autistic children.

“They were desperate for schools, and for their kids to have what everyone else had,” explains Gavin. “They took a lot of risks. If they hadn’t, the outlook for their children was institutional care, with precious little education.”

Alex has been cared for by the charity ever since. Now 36, he lives in a supported living home at New Warlands Farm, Country Durham.

His dad became a trustee in 2002 and took over as chair in 2005, the year the charity was renamed the North East Autism Society.

Back then, NEAS had just one school, an adult service, some care homes for adults and children, and employed around 250 people. Today, it has four schools, a college, skills centre, large social and vocational units, residential care and supported living homes, family support, short breaks lodges and employability services, and employs 1,200 staff.

“Everything I’ve ever done, I’ve thought about that first group of parents, wondering what they’d want us to do,” says Gavin.

“Their lesson was that you have to take risks to make things happen. The North-East’s a long way from Westminster and, if you wait for the Government to give you money, you’ll be waiting a long time.”

Soon after he took over as chair, he recruited John Phillipson as chief executive and he describes the appointment as “pivotal”.

“I told him I wanted to see big projects, and before long, I was begging him to slow down a bit!” he laughs.

John is the first to salute the outgoing chair:

“Gavin’s made a massive contribution, partly born out of being a parent, but because he’s naturally a passionate advocate on behalf of every service user and their families. He’s always got behind everything we’ve wanted to do.

Gavin will be succeeded by recently retired GP, Rakesh Chopra, whose son is also looked after by NEAS.

“I’ll miss it like hell because it’s been my life, but I know it’s in safe hands,” says Gavin. “I’ve visited a lot of places and I know that NEAS has services that are comparable to anywhere in the world.

“We take children and adults who’ve been failed by umpteen services, and it’s often us that stands between them having a quality of life or no life.”

Alex is just one example of the many beneficiaries. “We know he’s in a safe place for the rest of his life, and that means the world, because all you ever want is the best for your children,” Gavin says.

It may still be painful, but what makes Gavin Bestford’s contribution so special is that he didn’t just fight for his own son to have his best life – he fought for countless other families

Metro mayor praises NEAS employability scheme

North of Tyne mayor Jamie Driscoll visited our employability programme DiversityNE and praised its success at getting autistic and neurodivergent people into work.

The mayor also called on North-east employers to step up their efforts to recruit and support a more diverse workforce.

“Diversity of background and experience means a richer range of knowledge, character, thought and ideas –and what smart employer wouldn’t want that in their workforce?” Mr Driscoll said.

“DiversityNE is showing what can be done if you take the right approach.”

The scheme, which is aimed at reducing the disability employment gap, is funded by the North of Tyne Combined Authority and the European Social Fund and delivered by NEAS and Azure Charitable Enterprises.

By the end of 2022 it had supported 162 participants, four of whom met the mayor during his visit to DiversityNE’s office in North Shields.

Hannah Roxborough got her first ever permanent job through the scheme, at Tyne Tunnels. “It’s not tokenism – they care about you – and that makes a big difference,” she told Mr Driscoll.

“It’s very difficult to find an employer who supports you. Autism is a recognised condition, so why aren’t they recognising it?”

Callum Jewell had been unemployed for five years and struggled with anxiety and social interactions before he signed up to DiversityNE.

The scheme built up his confidence to the extent that he could achieve his long-term dream of getting a job with the NHS within a community palliative care team. He said:

“I think autistic people can have barriers that make it harder for them to get employment than a neurotypical person.”

Vicky Pervin, who has learning difficulties, is such a success as a care assistant with Solehawk she is their current employee of the month. Meanwhile Michael Milson, who has double vision and mobility issues because of a brain tumour, got a job as an IT service desk analyst with the NHS after six years on the sick.

“DiversityNE made me feel so much more confident in my abilities,” he said.

To find out what DiversityNE can do for you – or your business – get in touch here.

Spotlight On... Student Mentors

They meet the students regularly and help them navigate both the academic and social side of university life – from preparing for exams to making friends.

Izzy and Sophie just graduated from university themselves several years ago – both studied Psychology – and say that makes it easier for their mentees to relate to them. They also have a Level 2 qualification in Counselling Skills.

Sophie says:

“We can work with students for the full three or four years they’re at university. It helps them to have that familiar face, and not just a random person they go to when they need help.

“It is lovely to be with them for the whole journey. It gives you a lot of satisfaction when you see them get settled, especially if everything has been up in the air at the start.”

The pair regularly see 12-15 students each - mainly at Sunderland, Durham, Teesside and Newcastle Universities

as well as Hartlepool and Middlesbrough Colleges – and have capacity for more.

Their work is funded through Disabled Students Allowance and Student Finance England, and most referrals come from universities themselves or assessment centres.

They support students with understanding assessments, time management, exam preparation, navigating the campus, contacting lecturers, dealing with stress and anxiety, joining clubs and societies, making friends .. anything the student needs.

And they also find themselves lobbying lecturers on the students’ behalf sometimes. “Student support plans are shared with lecturers and relevant staff, but there’s no way of controlling that they’re being read and actioned,” Izzy says.

“There are a few lecturers we have to speak to and say, ‘the student has this needs assessment, you actually do need to do this.”

To find out more about the Student Mentoring Service, or to contact them, go to www.ne-as.org.uk/student-mentoring

Izzy Johnstone and Sophie Maddison are specialist student mentors employed by NEAS to support autistic and neurodivergent students at local universities and colleges.

Well done Rebecca Welch

Employee of the Quarter

Every quarter, NEAS staff are asked to nominate a colleague who has gone above and beyond in the delivery of their duties to benefit the Society and the individuals that we support.

This quarter, the winner is Rebecca Welch, senior family worker in our Family Development team who has single-handedly run almost 1,000 parent and toddler groups across the North-East.

Rebecca supports families in many different ways, from navigating applications for an Education, Health and Care Plan to delivering messy play sessions.

She was nominated by Family Development manager Kerrie Highcock, who said:

“The feedback we have received from families has been exceptional.”

Comments have included families saying they feel “less judged”, “less isolated” and “better informed” on how to support their child thanks to Rebecca’s sessions.

“All families have rated this service five stars,” Kerrie adds. “One parent in particular used to come to three groups per week because she and her son loved it so much.

“The children Becca has supported have developed in so many ways, from learning a new word, trying a new food, to finding a new activity they love.”

Our free toddler groups are aimed at children pre, during or post diagnosis, and run in Washington, Billingham and North Tyneside.

They give parents and carers a safe place to spend time with others in the same situation, provide children with fun and engaging activities, and offer information and advice. You can find out more here.

Congratulations to Rebecca, who wins £50 in vouchers and automatic entry into the CEO Commendation prize in this year’s staff Star Awards. Our next Employee of the Quarter will be announced in the autumn edition of The Loop.

Highlights of the Quarter

From our hugely successful Walk for Acceptance to an inspirational NHS worker’s pledge to run the Great North Run – here’s our highlights of the quarter…

Free toolkits are a huge success

As part of our Autism Acceptance Week campaign we created a series of free toolkits aimed at primary schools, secondary schools and businesses wanting to be more inclusive – and these were downloaded by more than 300 people.

The toolkits feature useful information about autism and neurodiversity, with guidance on reasonable adjustments that can be made to help pupils or employees. There are also educational videos, lesson plans, and a range of classroom sessions and activities.

Download our free toolkits here

Hundreds walk in support of autism acceptance

Almost 300 people took part in our annual Walk for Acceptance in April, which marked the end of our calendar of events to mark Autism Acceptance Month.

“It’s always brilliant to see so many people stepping out in support of the work that NEAS does and helping to champion our message of autism acceptance,” said Jon Appleton, Community and Events Fundraising Officer at NEAS.

As well as completing the one-mile route around the park, families also took part in a warm-up led by staff from Everyone Active’s Hetton Community Pool & Wellness Centre, enjoyed a visit from the Tyne and Wear Fire and Rescue Service and had their photographs taken with our mascot Snowdrop the Spikeshuffler.

Click here to read the full story

Tees businesses raise £5,640 for NEAS

Generous Tees businesses raised a brilliant £5,640 in support of NEAS after the inaugural Tees Business Awards event last month.

NEAS was the chosen charity mainly due to the involvement of our patrons, who all played a key role on the night.

Globally renowned Tees artist Mackenzie Thorpe was the keynote speaker, North-east TV royalty Pam Royle and journalist Peter Barron co-hosted the event, while Tees Business non-executive director Bob Cuffe delivered an emotional speech.

Click here to read the full story

James Cook Hospital awarded gold standard

The James Cook University Hospital, in Middlesbrough, became the first healthcare setting in the North-east to receive our Gold Autism Acceptance Award in recognition of its commitment to improving the experience of autistic and neurodivergent children.

Isabella Wright, six, is one of the young patients who has benefitted from the changes – which are all tailored to the individual - and mum Jacqui said she “can’t praise the hospital enough”.

Click here to read the full story

NHS worker takes on Couch to South Shields challenge

Jenny Dell has pledged to tackle her first Great North Run in support of NEAS after successfully completing our Couch to 5k training programme.

Jenny, who is autistic and works as a health care assistant at Darlington Memorial Hospital, responded to our call to get fit for 2023 by going from ‘Couch to 5k’ in just over 8 weeks.

She hit her 5k target just in April, and has decided to carry on training to run the Great North Run on September 10, and raise money for the Society. Well done, Jenny!

Click here to sign up for Couch to South Shields