Caring
who you are and of what brings
The caring challenge
The pressure on carers
of autistic children and
adults has been steadily
increasing, first with the
Covid pandemic and now
with the cost-of-living
squeeze. Sarah Welsh
speaks to those on the
front line who are going
more than the extra mile
for the ones they love
12 Au t i s m | e y e I s s u e 4 7 2 0 2 2
The moment Tansy Muller
realised her caring responsibilities
had finally become too much for
her was a dramatic one. She woke
up one morning and couldn’t get
out of bed because her legs
wouldn’t work.
Tansy had suffered a complete
physical burnout after years of the
stresses associated with caring
piled up on her. She was ‘out of
action’ for the next six months,
forced to give up caring for her
mum, who had dementia, and
trying to advocate for her two
autistic children via phone and
email. This intense experience led
to Tansy, 61, setting up her own
business – The Carer’s Coach –
helping to support many parent-
carers of autistic children. She
does a lot of this work free of
charge because she hates turning
people away.
Tansy’s son and daughter, Seb,
32, and Rosie, 24, both have
autism and ADHD. Rosie also has
associated learning difficulties and
mental heath issues. While Seb is
now working and Rosie is settled in
an assisted living setting, Tansy
says the caring never stops.
“Rosie was diagnosed at the
age of three,” Tansy recalls.
“With Seb it was later. He also
has dyspraxia and both my
children have sensory processing
disorder as well. Just having to
unwrap everything and work out
what it will mean for your child after
they are diagnosed with something
is really hard.”
www.autismeye.com
Tansy – who was a single parent
for many years after losing her first
husband when the children were
young – remembers how tough it
was as the main carer to deal with
constant school reviews and a
“crazy” amount of correspondence.
Juggling it all with her job
impacted her mental health to such
a degree that she had several
bouts of depression.
“I came from a teaching
background, so I’ve seen it from
both sides of the coin,” she says.
“When I had the breakdown, I
didn’t realise how close to the
edge I’d come. I’d become
exceptionally physically weak and
had to slowly build myself up and
build in the practice of self-care. I
learned that the hard way.
www.autismeye.com
I speak to
people who feel
in pain from the stress
of it all, crying at
night, feeling like their
caring responsibilities
will never end”
“Now, I meet parents who
can’t cope any longer and need
help navigating the education and
health and social care systems
for their children, need help
fighting for them. It can be a
constant battle.”
Tansy says that carers are now
under more pressure than ever –
and this was especially true during
the national lockdown periods
when respite support largely
stopped. “Isolation can be a huge
issue for carers,” she explains.
“I speak to people who feel in pain
from the stress of it all, crying at
night, feeling like their caring
responsibilities will never end.
“Caring for an autistic child or
children can mean you lose your
own sense of identity, the sense of
you purpose and joy.
“Carers always find time to do
things for their children, but it’s
also crucial to find 10 minutes for
yourself. Even if it’s just putting
music on and dancing while the
kettle’s boiling. Do something that
makes you feel free.”
Economy saves billions
According to national charity
Carers UK, one in eight adults in
the UK is a carer – that’s 6.5 million
people. What’s more, 1.4 million
carers provide more than 50 hours
of unpaid care each week. In total,
carers save the economy a
whopping £132 billion per year.
As for autism-related numbers,
the Local Government Association
estimates there are more than
three million family members and
carers of autistic children and
adults in the UK. And that’s based
on the old estimate of there being
Under more
pressure than
around 700,000 autistic adults and
children in the UK (using an autism
ever: parents
speak out about
incidence of one in 100).
An up-to-date number would be
the difficulties higher, with research by
of their caring Cambridge, Newcastle and
role, including Maastricht universities finding in
Tansy Muller March 2021 that autism rates in the
(above right) UK had risen to around one in 57.
This would equate to around 1.18
million autistic children and adults.
Alex’s story
Alex Kremer is mum to seven-year-
old Rufus, who was diagnosed with
attention-deficit hyperactivity
disorder (ADHD) and autism in
summer 2021. Alex, 35, from
Letchworth, Hertfordshire, also has
another child, aged four, who has
now been referred for a potential
Au t i s m | e y e I s s u e 4 7 13

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diagnosis. In addition, she has two
step-children, aged seven and nine.
Until a year ago she worked as
a birth parenting specialist, but has
had to give up her career in order
to provide Rufus with the support
he needs. She now does a few
hours’ freelance work each week
for TRACKS autism early years
centre in Stevenage. And she’s
currently applying for an
education, health and care plan
(EHCP) for Rufus.
‘It’s really draining’
“We had to push even for the
diagnosis for Rufus, as our GP
wasn’t supportive, but as soon as
he was seen by an educational
psychologist she says she knew he
was autistic,” Alex says.
She says she has found it hard
to come to terms with being a
carer. “I find it difficult to even think
about it in those terms, because
I’m just Rufus’s mum,” Alex
explains. “But when you think
about the amount of time I have to
go into school to do things like
persuade him to come out from
under a table, and all the medical
appointments, then it’s clear that
our lives revolve around Rufus.
“I’ve always been very
independent, but now I’m starting
to feel like I’ve lost a bit of me. One
of the hardest things is not being
able to have any control over my
work. We have no family living
nearby and no real support system
and it’s really draining.
“Rufus doesn’t want to go
anywhere, and that puts a lot of
pressure on us as parents to
manage his disability with our other
children 24/7. Carers need more
access to support. I know that
resources aren’t limitless, but there
simply aren’t enough people
working in this field.”
Carers need
more access to
support. I know that
resources aren’t
limitless, but there
aren’t enough people
working in this field”
www.autismeye.com
Sources of help
l IPSEA (which stands for
Independent Provider of Special
Education Advice) offers free and
independent legal information,
advice and support to help get
the right education for children
and young people with special
educational needs and disabilities
(SEND): https://www.ipsea.org.uk/
l James Hunt’s Stories About
Autism blog: www.facebook.com/
storiesaboutautism
James’s story
James Hunt, from Burnham-on-
Crouch, Essex, is a single dad to
Jude, 14, and 10-year-old Tommy.
Both boys are autistic and have
multiple associated complex
needs. James is also the main
carer for his 82-year-old father,
who has Parkinson’s disease, and
his mum, who is 76 and has
advanced dementia.
As well as this, James, who
previously ran his own marketing
company, runs the popular Stories
About Autism blog and online
support community, and has
recently finished writing a memoir
about his parenting journey.
“Mum used to help a lot with the
boys, but shortly before the first
national lockdown we started
noticing some changes in her,”
James says. “In November 2020
she was diagnosed with dementia.”
James shares caring for Jude
and Tommy with their mum, but
due to Jude’s complex sensory
needs the boys need to live
separately – so each of them stays
with him for half the week. Juggling
Caring
the boys’ individual needs and
routines has a daily practical
Caption impact on the support James
provides for his parents, who live a
short distance from him.
“Jude is happy to be at my
parents’ house for a certain amount
of time,” James explains. “But with
Tommy, once we’ve left their home
we can’t go back that same day
because he can’t cope with it. This
means I could be having to deal
with a crisis situation by phone.
The day-to-day juggle for me as a
carer is overwhelming.”
James thinks that the burden on
carers of autistic people has
Looking after hugely increased since the start of
his boys: the pandemic. “Everything seems
James Hunt to have got harder, with longer
with Jude (top) waiting times,” he says.
and Tommy “Through the blog and
(above) Facebook group, I’ve had loads of
people reaching out to me for
support. Diagnosis is taking longer,
people are having to fight for
Disability Living Allowance and are
routinely being turned down for it,
parents are fighting for an EHCP
for their child and access to an
appropriate educational setting. I
get hundreds of messages a day
and each story is difficult. It’s
overwhelming, but I try to help.
“As carers we automatically feel
guilt, but we’re also entitled to
have our own lives. I’m a firm
believer in looking after yourself,
because if you don’t you can’t look
after your child.
“I tell people to slow down. We
feel we have to go at 100mph and
solve everything we can
immediately, but what I’ve learned
is that you have to take things one
day at a time. There is no magic
way to handle things as a carer.”
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