Parent support
You need to find
A different kind
of peer pressure
When you have a child
with autism there’s sadly
no guarantee that the
support of friends or even
family will come hand-in-
hand with the diagnosis.
Sarah Welsh shares her
own experiences and
those of other parents in
finding the peer support
they so badly needed
20 Au t i s m | e y e I s s u e 3 7 2 0 2 0
It was three years ago and yet I
remember the experience like it
was yesterday.
I had taken my son Rory, then
aged three and recently diagnosed
with Autistic Spectrum Disorder
and an associated learning delay,
along to a local pre-school story
book class. That particular week’s
theme was Julia Donaldson’s Stick
Man, a favourite with Rory.
I was nervous before leaving the
house, because we’d found with
previous experience that Rory often
didn’t ‘conform to the norm’ due to
his ASD. But I naively thought that
with a carefully chosen activity, we
might both get something positive
out of it. An hour later, back at
home, I lay flat on the sofa while
Rory played, struggling to regulate
my breathing as waves of anxiety
washed over me.
The class had been an utter
disaster. Rory had spent the whole
time running around in circles
trying to ‘regulate’, as other
bemused parents and children
looked on, or trying to get out
through the fire escape. After 30
long minutes I thanked the class
leader and told her we were
leaving. Her relief was palpable.
This is only one example of times
my husband Geoff and I have
struggled in social settings with our
son. But now, after years of living
with Rory’s autism, we know
instinctively what activities he can
cope with and what is – and is not –
www.autismeye.com
easily accessible to us as a family.
You do get used to the stares
and occasional comments that
come along with this often-invisible
condition, but what has
undoubtedly made things easier for
us is the support of close friends
and our families. In a world where
understanding and kindness goes
a very long way, this can make all
the difference.
What I’ve discovered along this
journey though is, shockingly, how
our experience seems to be the
exception rather than the norm. I’ve
heard tales of mum friends who
stopped being invited to coffee
mornings and nights out because
peers ‘didn’t think they’d like to
come along any more’, parents
www.autismeye.com
Better together: who now only feel comfortable
“What has socialising with friends in the same
undoubtedly situation as them – and even
made things pensioners who not only dispute
easier for us is their grandchildren’s diagnosis, but
label them as merely ‘badly
the support of
close friends” behaved’. The mind boggles.
KAREN BILLINGHAM
‘It’s very common to
feel desperately lonely’
Charity Thinking Autism has
members across Britain and places
central importance on organising
social activities throughout the year
for them to attend with their families.
Trustee Karen Billingham is a
mum of three, and her 21-year-old
son Joe is severely autistic, having
been diagnosed just before his
your own
parenting tribe and
charity forums”
third birthday. “The irony was that
although people and society
generally knew much less about
autism back then, it was a lot
quicker for us to get a diagnosis,”
Karen says.
“Joe was home-schooled from a
very early age until 11, and
although I’d worked as a paralegal,
so knew how to advocate for him,
as anyone in this situation knows,
the pressure on parents is hard.
“Joe was diagnosed in 2002
and I can still clearly remember
those feelings of social isolation.
When I’d get together with my pre-
natal group and they’d chat about
their kids developing normally it
was tough. But luckily within a few
weeks of his diagnosis I saw an
article in the local paper about a
parent support group, and for the
past decade have been a trustee
with Thinking Autism.
“It’s very common to feel
desperately lonely and it can affect
your mental health as a parent. You
need to find your own parenting
tribe and charity forums, and
Facebook is great for that.
“I do have friends with no
connection to autism, but it takes a
very special person without personal
experience to understand it.”
CLARE SAMWAYS
‘We certainly found out
who our friends were’
Clare Samways, whose 15-year-old
son Mark has ASD and was finally
diagnosed at age eight, founded
Buckinghamshire-wide parental
Facebook support group GRASPS
in March 2013. Her aim was to
provide the peer support to parents
that she had lacked when her own
children were young.
Clare, a charity fundraising lead
from Aylesbury, also has an
18-year-old daughter, Julia, who
has never been officially
diagnosed. However, Julia
presents in many ways as being on
the spectrum, and has struggled
with anxiety and depression.
Au t i s m | e y e I s s u e 3 7 2 0 2 0 21

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“After years
of living with
Rory’s autism
we know
instinctively
what activities
he can cope
with”: Sarah
Welsh’s son
with her
husband, Geoff
CINDY CHAREST
Find local and national ‘Don’t feel that your
family’s world has
education and support ended – you are just on
a different road’
Family psychologist Cindy Charest,
from Glasgow, retired from working
for CAMHS – where she
specialised in children with
learning difficulties – so she could
focus on the national lack of
resources for ASD children.
Her eldest son, aged eight, has
Sensory Processing Disorder, so
she sees things from a parental as
well as a professional perspective.
She now conducts counselling
sessions with families, working with
parents on coping strategies.
“Lack of peer support for
parents is very real,” Cindy says.
“Sometimes pre-diagnosis is even
worse because you may think it’s
all in your head. It can be scary to
admit that your child is struggling.
Education & Support Finder “And then post-diagnosis you
are obviously grieving for the kind
www.autismeye.com/ of future you thought your child
education-and-support-finder would have and you’ve become a
carer overnight.
www.autismeye.com
“We had our suspicions from the
age of three that Mark was autistic,
but it was a battle to get him
diagnosed,” Clare recalls. “At the
time we didn’t have much support;
we certainly found out who our
friends were.
“Some people ebbed away
because they couldn’t cope with
Mark’s behaviour, and we as a
family became very isolated. Mark
was often simply labelled a
‘naughty child’.
Plunged into darkness
“I remember group activities when
he was young were particularly
painful. One PTA fundraiser music
show at Julia’s primary school in
particular sticks in my memory.
“The hall was suddenly plunged
into darkness and Mark started
screaming, he was petrified.
“Sometimes I’d go to the bottom
of the garden, put a cushion over
my face and sob. I felt so on the
periphery of other parents.”
Clare says that GRASPS is all
about ‘bolstering others up’.
“It’s a safe space where
parents can talk to each other, not
Friends who not
only understand
but who have been
there can make all
the difference”
Parent support
I lay flat on the
sofa while Rory
played, struggling to
regulate my breathing
as waves of anxiety
washed over me”
just sharing fears and facts, but
also support.
“I founded the group with a
friend and we started with coffee
mornings in our homes, but when
we reached 1,200 members we
decided to keep it Bucks-specific.
“Lack of peer support for
parents undoubtedly leads to
social isolation at a time when you
are struggling to come to terms
with a difficult diagnosis and
learning to navigate what
professional support is out there.
“There is sadly a real lack of
support and clarity of
information, and that’s where
friends who not only understand
but who have been there can
make all the difference.”
“No one gives you the tools to
cope with this, so if you can’t
speak with others who understand
it is very difficult.
“Mostly, parents don’t want
sympathy, though. What they need
is someone to acknowledge this is
really hard, someone to listen.
“Parents need to be well
themselves in order to look after
their children, and peer support
really does help with this.
“Some parents may choose to
be friends only with others in the
same situation as them, while
others may find this too all-
consuming. It’s about finding the
support that’s right for you.
“What is important is to talk
because your life has changed,
alongside your child’s life, and so
has parenting. Don’t feel that your
family’s world has ended – you are
just on a different road.”
CONTACT
lT hinking Autism:
www.thinkingautism.org.uk or
email: mail@thinkingautism.org.uk
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