Community Support

Set up your
own club
People with autism don’t have to be isolated.
Fiona McNeill talks to parents who have set
up their own social clubs with great success

Caption

As the saying goes, necessity is
the mother of invention. This is
especially true when it comes to
the parents of a child with autism,
Over the years, Autism Eye has
featured countless plucky parents
who have started social
enterprises, written blogs,
developed therapies or products
would accept his differences and
he could mix with other kids on the
spectrum. Unfortunately, she
discovered that there was no such
place anywhere near where she
lived. The only option, it seemed,
was to start her own.
More to it
saying, ‘Look! He’s actually
talking to someone!’
“I would say to other
parents thinking of doing the
same thing, don’t be
disheartened by all the red
tape,” Waddle adds.
“Once it’s set up, running it
is easy.”
Kate Page is an employee
with The Resource Centre, an
“It’s fantastic”: organisation that offers advice
Shelly Waddle, The adults have and support to community
pictured with groups in Brighton and Hove.
her son Jack, bonded and She says that it is possible to
above left, some of the kids have set up a group without all
set up Jack’s the paperwork.
Autism Club. made friends”
The club has Run more smoothly
been highly create an agenda for the club, put “It’s certainly not illegal and
IMAGES COURTESY OF SHELLY WADDLE
Access issues
There are no additional regulations
when setting up a group for children
who have mobility issues in
addition to autism, says Kamran
Mallick, chief executive of charity
Disability Rights UK.
“It’s the responsibility of the
owner of the building – the church
hall or community centre – to make
sure it’s accessible,” he points out.
Nevertheless, physical problems
can make it more difficult for
families to get out and about to
local groups. Mallick says that some
local authorities offer community
transport schemes. `“Sometimes
they also have school buses which
aren’t used during the day which
they will let people use for other
purposes,” he adds.
“Having a bank account gives
you a formal trail of where the
money’s going,” she adds. “It’s
easy to lose track when you’re
renting a hall and paying for teas
and coffees.”
Some groups, Page points out,
begin with casual get-togethers
and formalise their arrangements
further down the line as they
acquire more members and work

and retrained as advocates – all to
help children thrive despite the
challenges of an ASD.
Shelly Waddle, from
Washington, Tyne and Wear, was
keen to find an out-of-school social
club for her autistic son Jack, aged
12. She was hoping to come
across a place where people
“I thought I would just hire a church
hall and stick a few toys in the
middle, but I soon discovered
there was more to it than that,” she
says. Waddle was advised to set
up as a ‘Community Group’ – that
is to say, a not-for-profit
organisation that benefits the local
community. To do so, she had to
active, as together a committee, take out you don’t have to register out what their aims are.
these snaps insurance and open a bank with anyone,” she points out. And though there is usually
and publicity account, among other “But things like having a no problem in running a parents-
materials administrative tasks. The process We’ve got a pool table, arts and constitution, keeping records and only group, if children are to
illustrate took around two months. crafts activities and a sensory tent. allocating jobs to different people be involved there may be
Jack’s Autism Club launched in “We’ve had days out and we’re is a way of being clear on what certain requirements.
March this year. “Now we’re up planning a pizza night. The adults you’re doing and how the group “The crucial thing is whether or
and running, it’s fantastic,” she have bonded and some of the kids might develop. It helps things run not the parents are present and
explains. “It’s just like a youth club. have made friends. I get parents more smoothly. taking responsibility for looking

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Hericor-MRL
Community Support

Enzyme Nutrition to Maintain

a Healthy Digestive System Six tips for
setting up your
Hericor-MRL promotes a healthy digestive system in those patients
with compromised digestive functioning in the small intestine.
own group
Helena Bateman,
Hericor-MRL provides three important enzyme groups. These branch and
enzyme groups are: community
Enzymes that prevent oxidative stress: engagement
manager with the
l Laccase
National Autistic
l Superoxide dismutase
Society, offers
Enzymes that prevent cellular growth: these tips for setting up a group:
l Protease l Choose your venue and time
carefully – think about noise, parking,
l Glucose amylase
accessibility and school hours.
Enzymes that promote detoxification: l Publicise the group – maybe via
l Peroxidase social media or posters at your local
For more information please contact:
GP’s surgery.
l Cytochrome P-450
Aneid UK Ltd l Have refreshments available –
l Cytochrome P-450 reductase The Spires, Suite 8, Adelaide Street, Luton, Bedfordshire,
a slice of cake and a cup of tea
LU1 5BB, UK. Tel. + 44 (0)1582 485 209
Hericor-MRL should be taken two weeks prior (and during) email: info@aneid.com www.aneid.com
always go down well!
supplementation with either an Omega-3 complex and/or l Offer an opportunity for everyone
Also available from: after their kids,” she explains. to introduce themselves. It’s a good
other supplements to accelerate and maintain the uptake of Mandi Mart detoxpeople Ltd
such supplementation. www.mandimart.co.uk www.detoxpeople.eu
“If they are present but the children I wanted to see way to break the ice.
are being looked after in a different l Make new people feel welcome –
room (so a crèche is being whether there it can be a daunting step for some
provided) then some regulations was a need. Sixty-five people to attend for the first time.
do kick in.” l Don’t worry if only a couple of
Lindsey Butterfield’s son Jordan people turned up!” people turn up, numbers will
Galvanised: received a diagnosis of Asperger’s fluctuate and word will spread.
Lindsey and ADHD when he was four-and- isolated, Butterfield galvanised
Butterfield, who a-half years old. By the time he herself. In 2009 she hired a church
set up Parents was seven he had been to five hall and gave out flyers inviting members and has become an
for Autism. It different schools and his mum was people who had an autistic child to official community group named

Living with autism isn’t easy. now attracts

large audiences
falling apart.
“I really struggled and there
meet for a coffee. Parents for Autism. There’s a
website and a Facebook page
for its events didn’t seem to be anywhere to go Rushing around where parents support each other.

But finding out all about it should be. (top) for help,” she says. “It got to a
point where friends seemed to be
dropping off because they couldn’t
cope with his behaviour, either.
I thought, ‘Where do I belong?’”
Certain that other parents in her
Help us grow - suggest a link
home town of Worthing, West
Sussex, would be feeling similarly
Events
Calendar
“I wanted to see whether there was
a need,” she says. “Sixty-five
people turned up!
“I spent the whole time rushing
round, taking names and asking
people what they wanted from a
support group.”
Today the organisation has 500
Butterfield also organises
regular guest speakers covering
subjects as diverse as benefits,
parent wellbeing, Lego therapy
and the problems of her local
CAMHS (Child and Adolescent
Mental Health Services).
“I didn’t want it to be the kind of
group where you just sit round in a
circle. I went to a meeting like that

Search CONTACTS once and I came away feeling

Money
& Law Independence
l Jack’s Autism Club on Facebook: www.facebook.com/JACKsautismclub/ worse!” she laughs. She
Everything you need to know Support Groups
News
& Social
Education
and email: jacksautismclub@gmail.com recommends anyone wanting to
all in one place
Media

Diagnosis
Therapies &
Resources
& Accessories
Inspiration
& Good Ideas
l Parents for Autism: www.parentsforautism.org.uk start a support group should begin
Care Approaches
lT he Resource Centre can only offer advice to people in Brighton and Hove, with social media postings inviting
www.autismlinks.co.uk
Research
Services & Publications The Local Offer
IMAGES COURTESY OF LINDSEY BUTTERWORTH

but has a lot of free information on its website: www.resourcecentre.org.uk people to meet in a cafe. If enough
lN AVCA, the National Association for Voluntary and Community Action, has people are interested, she
an online directory of local organisations that can advise people on setting suggests, make it a regular meeting
up community groups: www.navca.org.uk and see how it develops.
lN CVO, the National Council for Voluntary Organisations, also offers advice to Butterfield’s son is now 18 and
community groups in England: www.ncvo.org.uk attending college. “There will
l SCVO, the Scottish Council for Voluntary Organisations: www.scvo.org.uk always be issues, but I feel like I’m
l WCVA, Wales Council for Voluntary Action: www.wcva.org.uk coming out the other side at last,”
l NICVA, Northern Ireland Council for Voluntary Action: www.nicva.org she says.
l To find out about local NAS groups, visit www.autism.org.uk/services/local “I don’t want other parents to go
l Disability Rights UK: www.disabilityrightsuk.org through what I went through.”

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