Insight
I have been working in the NHS
since 2009, and as a paediatrician
since 2011. There have been many
long day-shifts and many long
nights in what is an intense but
very rewarding speciality.
Through all the training and
stress, I have been incredibly lucky
to have a tremendously wonderful
and supportive wife, Steph. We
were married in 2013 and were
blessed in 2014 to welcome our
first son, Freddie, into the world.
Trying to balance being a doctor
and a parent is very difficult, but
particularly so being a
paediatrician. Professionally, I’m
meant to know ‘everything about
children’, but this is far from the
case. With the long shifts there was
a constant feeling of ‘not being
there enough’. My wife, too, was
finishing off her PhD, meaning we
were not there for Freddie as much
as we would have liked.
His one-year milestones seemed
There seems to
be no effective
early intervention,
through lack of
inclination as well as
lack of funding”
OK: he was walking, building
amazing brick constructions,
babbling, and was interactive. He
just wasn’t saying any words,
hated going to National Childbirth
Trust group meetings (all girls) and
really hated hairdryers. His lack of
speech was obviously a concern
as he got older. “It’s because he’s
a boy,” everyone said (including
my colleagues).
I suppose it was a trip to
Germany that got the alarm bells
ringing. We went for a family
wedding to a place just outside
Berlin when Freddie was 15 months
old. It was in the height of summer
and roasting hot, but Freddie just
seemed to be in his own world. He
became obsessed with kicking the
gravel at the side of the hotel, as
well as with traffic cones. He would
not answer to his name or
commands. Seeing him around
children of his own age really
8 Au t i s m | e y e I s s u e 2 8 2 0 1 7
‘We’re failing
a whole
generation’
Dr Ben Marlow is a paediatrician and dad
to Freddie, who has a diagnosis of autism.
He experiences both sides of the NHS and
tells of his frustration at the ‘pitiful’ way
it has treated his son and other children
with autism – and why it has to change
started to compound our worries.
Back in the UK we found we
were expecting our second child.
Our efforts focused on Steph
finishing her PhD and she actually
finished the viva (oral examination)
20 weeks’ pregnant. We became
increasingly concerned about how
Freddie might react to having a
little sister, and we were both in
denial, I think, over the concerns
that had started to filter in.
Evie was born in June and it
was as if Freddie ‘switched off’. He
no longer greeted us in the
morning with a smile; he ran off
whenever he could. Worst of all, he
showed no recognition or affection
for his little sister. Sleep deprived
and stressed, we were worried.
The health visitor agreed. Her two-
year developmental check made
us both feel sick as we began to
realise the reassurances we had
received over the previous six
months were hollow.
That realisation: the moment in
your life when everything gets
www.autismeye.com
Dad and turned upside down. It is grief for
son: Dr Ben the child you thought you knew,
Marlow with but now have lost. The difference
PHOTOGRAPHS COURTESY OF DR BEN MARLOW
Freddie, who with this grief is that nobody seems
he believes has to understand, including your own
been failed by family. It’s not being able to
the NHS since comfort your child, to understand
his autism why they are upset, why they show
diagnosis no affection towards their sibling.
Frustrating delays
We were referred to the community
paediatrician quite quickly and
advised to try and socialise
www.autismeye.com
come quicker. We were told older
Freddie in nursery to “see how he
gets on”. He spent the following
months running around nursery
putting his hands over his ears,
tapping pencils and getting upset.
The staff were extremely friendly
and considerate, but at a loss how
to help.
It took Early Years seven months
to come and see him for the first
time in his nursery after the initial
referral, which felt like an age.
Certainly, with hindsight, we wish
we had pushed for support to
children were being prioritised over
Freddie, which we found very
difficult to accept and completely
against all current evidence for
early intervention3.
There was also audiology: four
attempts at a hearing test spread
over ten months. Freddie had no
interest in the toys being waved in
front of him and, unsurprisingly, kept
wriggling out of reach until, at the
fourth attempt, he managed it. Then
there was a referral to speech and
language, which took two months.
By this point, we, as very
anxious parents, decided to go
privately. As a service, I think
Speech and Language (certainly
in our area) is very understaffed
and after one year we still have
received only two sessions on the
NHS (both of which have been in
a group).
I think the most serious failings
are in the recognition of the
Being on the
other side of the
NHS has shown me
how truly frustrating,
slow, antiquated and
not fit for purpose it is”
diagnosis. It was almost an
afterthought, a “you already knew”
approach. The devastating feeling
of guilt and grief has still gone
unrecognised by every health
practitioner we have met. Neither
has there been any recognition of
Freddie’s sensory issues, nor any
Occupational Therapy (OT)
support from the NHS, which we
feel would have had a tremendous
benefit in regulating his behaviour
and diet. This is all because it is
not commissioned in our area, due
to ‘lack of evidence’.
Maybe there are different (and,
I am sure, better) ASD pathways in
other locations, but, again, why
should there be such a postcode
lottery with healthcare? I also feel
the umbrella term ‘autism’ does not
reflect the complexity and
variability of the condition –
especially when trying to meet the
needs of an individual.
Au t i s m | e y e I s s u e 2 8 2 0 1 7 9

Then, after the diagnosis, what
next? Again, the NHS seems
merely to be geared to diagnosis.
Once this has been achieved,
there is very much a sense of
being cast adrift. There seems to
be no effective early intervention,
through lack of inclination as well
as lack of funding.
Brink of a catastrophe
I think the NHS needs to realise
that we are on the brink of a
catastrophe. For some bizarre
reason children are being failed on
a daily basis. “Let’s see how they
do…” seems to be the mantra for
children with obvious specialist
needs who are not being catered
for. The emphasis is on diagnosis
rather than intervention.
Unfortunately, the incidence of ASD
is rising (currently 700,000 in the
UK, 1 per cent of the population).
The London School of
Economics estimated in 2014 the
The NHS seems
merely to be
geared to diagnosis.
Once this has been
achieved, there is
very much a sense of
being cast adrift”
economic cost of autism to the UK
economy to be £32 billion (more
than heart disease, cancer and
stroke combined)1.
Despite this, only £4 million is
spent annually in the UK on autism
research (equating to £6 per
person of the 700,000 diagnosed)2.
Meanwhile, £500 million is spent on
cancer research (£220 per person)
and £90 million on dementia (£110
per person)3.
Having children merely exist in
underfunded state educational
facilities is not meeting their needs.
It is not helping them learn or
acquire new skills. It is babysitting.
Again, for some bizarre reason
medical research seems to be
prioritising the elderly. I am not
belittling the tragedy of having a
relative with dementia, but the
discrepancy between researching
degenerative disease in the elderly
10 Au t i s m | e y e I s s u e 2 8 2 0 1 7
and neurodevelopmental disorders
in children is particularly one-sided
towards the older generation.
Our ‘early intervention’
Over time, we have evolved our
own timetable. Freddie is
managing mainstream nursery a
few days a week, but also attends
a specialist nursery called ‘The
Puzzle Centre’ near Winslow,
Bucks. It combines highly
experienced and qualified
specialist teaching with speech-
and-language and occupational
therapy under a Scerts multi-
disciplinary educational model.
In a specially designed, calming
environment the Puzzle Centre
team provides intensive, one-to-
Smiling and one and small-group teaching and
looking happy: support. It combines the Early
but Freddie’s Years curriculum with evidence-
lack of speech based approaches that address
was among his specific communication, social and
parents’ early emotional challenges faced by
concerns children with autism. It took us nine
months to get a place purely
because of the demand.
Puzzle Centre is the only
specific early intervention centre
for autism with a specialist nursery
we could find across four counties,
but is a charity that relies on
privately raised funds to continue.
Freddie really enjoys attending,
and it is the first place that really
seems to understand and meet his
needs. Yet it’s a one-hour journey
from our house, as our current
www.autismeye.com
Insight
county has no such provision
because previous nurseries have
all closed. Why can’t the NHS meet
the needs of pre-school children
through appropriate and
understanding nurseries such as
the Puzzle Centre?
Dr Ben Marlow is a
neurodevelopmental Other side of the NHS
paediatrician working Being on the other side of the NHS
across Luton and has shown me how truly frustrating,
Cambridge slow, antiquated and not fit for
purpose it is. The emphasis on
merely diagnosing rather than
having some sort of structured
intervention is truly pitiful. Even
then, there is no recognition of just
how devastating this diagnosis is
and no support through that
process (apart from a leaflet and
direction to “google help”).
Every contact with ‘help’ seems
to be blighted by a need to fight
our corner to try and help our little
boy – and justify our reason for
requiring it. It is exhausting and a
disgrace that the Government
continues to cut pre-school
provision without any comeback.
A report published this year
reflects the dangers of this short-
sightedness. It says: ‘Every autistic
child becomes an autistic adult. It
is not an unreasonable assumption,
therefore, that actions taken in
infancy and childhood can have
lasting benefits in adulthood –
personal, societal and economic
benefits … But ever-tightening
budgets and ever-present
performance targets have a
tendency to encourage short-
termism and narrow horizons.”3
Early intervention and funding is
crucial. A wait-and-see approach is
not the right answer. Jeremy Hunt,
the longer our children are
neglected the greater the cost
socially and financially.
We’re failing a whole generation
of children and their families.
REFERENCES
1
Buescher et al (2014): ‘Costs of autism spectrum disorders in the
United Kingdom and the United States’, JAMA Paediatrics 168. 721-8,
www.ncbi.nlm.nih.gov/pubmed/24911948
2
Pellicano et al (2013): A Future Made Together: Shaping Autism
Research in the UK. London: Institute of Education,
http://eprints.ioe.ac.uk/17703/1/A_Future_Made_Together_1.2_LR.pdf
3
Lemmi et al (2017): The Autism Dividend: Reaping the Rewards of
Better Investment, The National Autism Project,
http://nationalautismproject.org.uk/the-autism-dividend