Assessment
An accurate
diagnosis of
autism can be
life changing for
children and
adults. Without
one, the needs
of those on the
spectrum are
left unmet, with
far-reaching
consequences.
Fiona McNeill
talks to experts
about setting
out to gain a
diagnosis and
what it means
for families
The pandemic has affected all
NHS waiting lists – and autism
services are no exception.
According to estimates from
NHS Digital, referrals for suspected
autism have surged as Covid-19
restrictions have gradually lifted.
Between October 2020 and June
2021, more than 45,000 people
were referred to specialist services.
Sadly, as lists have grown, so have
waiting times, with adults and
children often being told they must
now wait years for a diagnosis.
It’s a desperate situation, says
Dr Ben Marlow, a consultant
paediatrician with the NHS who
also works for Re:Cognition Health,
offering private autism assessments
and diagnoses. He also has a son
on the autism spectrum.
“These delays are
unacceptable,” he says. “If
children are waiting more than two
years for a diagnosis, a lot of early
work will be missed.” Prompt
intervention, he says, can do a lot
18 Au t i s m | e y e I s s u e 4 5 2 0 2 2
Journey to
a diagnosis
to reduce difficulties further down
the line.
Dr Frank Burbach is head of
outcomes, research and innovation
at Healios. The organisation offers
online assessments for autism,
attention deficit hyperactivity
disorder (ADHD) and mental health
issues for youngsters aged seven to
25, privately and via NHS referrals.
He points out that assessing autism
has always been a labour-intensive
and costly process. “The NHS is
wonderful, but there has never
been enough money or qualified
staff,” he explains. “Diagnosing
autism isn’t like a blood test – it’s a
process that involves the clinical
judgement of a team of highly
experienced professionals and at
least 15 hours of assessments,
meetings and reports.”
One silver lining to the
pandemic, Burbach says, is that
many organisations have been
forced to increase their use of
virtual technology. The growing
popularity of video assessments
means that patients can be seen in
weeks rather than years. Helios
also offers a post-diagnostic
service, helping people to find the
best way forward with the condition
– something the NHS usually
cannot provide.
Paul Cooke is MD of Wellbeing,
an organisation that provides
private assessments for children
and adults. The company has also
recently been taken on to help
clear the NHS backlog in south
and central Essex. Cooke explains
that part of the organisation’s
assessment process also takes
place via video-call, which again
makes the service prompt.
“We’re also starting an online
course for parents, post-
diagnosis,” he says. “Getting a
diagnosis is only part of the journey
and people can feel lost. Being
able to empathise with others
going through the same thing is a
great help.”
www.autismeye.com
The company has launched a
new website with autism-related
resources for families. This
includes a short video tour of the
clinic, which can reassure anxious
children in preparation for an
in-person meeting.
Dr Frank Burbach: What’s the difference between
“Diagnosing autism an autism assessment and a
involves the clinical diagnosis?
judgement of a team Assessments are about collecting
of highly experienced information on a person’s strengths
professionals” and difficulties in different areas.
They may include formal reports
from speech-and-language
therapists, paediatricians,
educational psychologists or
occupational therapists, for
example, or the opinions of
schools, parents or employers.
These are useful in highlighting
Paul Cooke: “We’re possible signs of autism, but don’t
starting an online count as a diagnosis.
course for parents, The diagnosis itself is the final
post-diagnosis ... A ‘rubber stamp’, where a team of
diagnosis is only part health professionals evaluates all
of the journey” the evidence and decides whether
www.autismeye.com
If children
are waiting
more than two years
for a diagnosis, a
lot of early work
will be missed”
“We look at their ability to use
their imagination and ask
questions. With adult patients, it’s
similar but there’s more secrecy.
We can’t tell them what we’re going
to do in the session because we
don’t want them to prepare for it.”
The timing of the whole process
via the NHS varies depending on
where you live, she points out.
“Some people will have an initial
Signs that someone might
assessment but wait months or
years for the final stages. For
be on the autism spectrum
others, everything is delayed.”
Another snag, Wilson explains,
Autism varies from person to person, but
signs might include repetitive behaviour, fixed
is that in some parts of the country,
autism and ADHD are dealt with
interests, avoiding eye contact, high anxiety, separately. “The conditions often
difficulty making friends and understanding how overlap. Some families get to the
others feel. Girls tend to hide their symptoms top of the list to be told their child
better than boys and are said to be better at doesn’t have autism but might
imitating the social behaviour of their peers. have ADHD. They then go to the
bottom of a new waiting list – it’s
really frustrating. The Owl Trust is
developing a joint pathway to
a person meets the criteria for combat this.”
autism. To do this, they use How do you get an assessment
specialist diagnostic systems. The or diagnosis via the NHS?
first of these is based on a detailed The process for having an autism
questionnaire about the patient’s assessment or diagnosis is
communication skills, repetitive different for adults and children.
behaviour and social interaction, The first step for everyone is to be
usually conducted with the parents Elaine Nicholson: referred to a specialist team and
of those who have been referred for recommends steering put onto a waiting list. Adults can
evaluation for possible autism. clear of individual be referred by their GP or a mental
The most commonly used practitioners offering health worker, while children can
systems for diagnosis are the ‘ADI- a diagnosis without be put forward by their school or
R’ (Autism Diagnostic Interview – team support Child and Adolescent Mental
Revised) and the ‘3Di’ Health Services (CAHMS). You can
(Developmental, Dimensional and find your local CAHMS provider
Diagnostic interview). online via the NHS website.
The latter is an ‘ADOS’ Is there any difference
assessment (Autism Diagnostic between an NHS or private
Observation Schedule), which assessment and diagnosis?
analyses the patient’s behaviour on The diagnostic process should be
that day. “For children, it’s usually the same in a private clinic as with
play therapy,” says Jen Wilson, Jen Wilson: “Some the NHS, but patients can refer
director of neurodiversity at The people will have an themselves to a private clinic and
Owl Therapy Centre, an initial assessment but are usually seen promptly as there
organisation that undertakes NHS wait months or years is no waiting list. Many private
and private assessments and for the final stages” companies say they can complete
diagnoses across the UK. the whole procedure within weeks.
Au t i s m | e y e I s s u e 4 5 19
 Assessment

Diagnosing
autism isn’t like
a blood-test – it’s a
process that involves
the clinical judgement
of a team of highly
experienced
professionals”
How much does a private
assessment or diagnosis cost?
An initial assessment starts at
about £350, with a full assessment
and diagnostic package costing
between £1,400 and £2,000. Many
organisations offer a free, initial
telephone chat.
Who can make an assessment
or give a diagnosis?
Elaine Nicholson, MBE, is a
specialist autism counsellor who

Empowering through
offers private assessments and
also works as part of a diagnostic Case study – adult:
team. “Assessors should belong to ‘A diagnosis would help with work and accessing
the HCPC (the Health and Care
counselling, as well as understanding myself’

an accurate diagnosis
Re:Cognition Health’s Autism Clinic comprises
a team of leading experts, specialising in
diagnosing autism, ADHD and other conditions.
We are experts in developing referral pathways
and bespoke treatment plans including early
intervention & play-based therapies.
Our multi-disciplinary team work in
collaboration with the child, family, carer and
support network to ensure the best possible
outcomes for children with autism.
Professions Council),” she
explains. “For example,
occupational therapists or speech-
and-language therapists. A
chartered clinical psychologist is
also suitable. I’m slightly different:
as I have an MSc in Autism I can
offer an ‘academic’ opinion to
Assessments are offered within two weeks support a diagnosis.”
The team should also include a
of enquiry at an affordable price in our medical professional such as a
London Clinic. paediatrician or psychiatrist, she
says, and all members should have
completed courses in using ADI–R
Take action today (or similar) and ADOS.
She recommends people
020 3355 3536 research private companies
www.recognitionhealth.com thoroughly and steer clear of
individual practitioners who may
@ReCogHealth try to offer a diagnosis without
team support. Likewise, Dr Ben
Marlow warns that just because
someone is a paediatrician, it
doesn’t mean they have experience
in neurological disorders.
What are the benefits of a
Re:Cognition Health diagnosis for children?
A key benefit of diagnosis is
77 Wimpole Street unlocking specialist educational
support. An example of this is at
London W1G 9RU Alderwasley Hall in Derbyshire, an
independent school for young
people with autism or language
Steven Shaw (left), who lives in London, is a special needs teacher currently
studying for a PhD in Education at University College London. He approached his
GP last summer to request an autism assessment.
“My family have always said I’m on the spectrum,” he says. “They say I didn’t
like loud noises as a child and that I wouldn’t go on the beach because I didn’t
like the texture of sand. I was quiet at school, but I wasn’t shy – I just didn’t know
what to say to fit in socially. Eventually, I got into sport, which was more structured, and that
helped me make friends.”
Now aged 30, Shaw has decided to pursue a diagnosis because he needs support for bouts
of being overwhelmed. “Every couple of years, I get social burnout. I completely withdraw
and I can’t talk to anyone,” he explains. “A diagnosis would help with work and accessing
counselling, as well as understanding myself a bit better.”
Having completed the initial assessments, he has been told there is now a wait of two to
three years for the final stage. “It is frustrating,” he says. “I’m OK at the moment, but I’ve got no
support in place if burnout happens again.”
disorders. Emma Illingworth, head diagnosis, the more support they
of therapies, says a formal have. There are also more
diagnosis is an essential resources available to them via
requirement for any pupil joining social care support services.”
the school. She thinks it is the Colleague Natalie Mills adds
same at other specialist schools as that long delays in receiving a
part of their legal set-up. diagnosis can have a disastrous
“A diagnosis can be difficult Emma Illingworth: effect on a child’s mental health.
from a child’s point of view, as they “A diagnosis can be “We’ve noticed a massive increase
will probably have to meet lots of difficult from a child’s in school-refusing, particularly
people and go through lots of point of view, but it’s when children transfer to
assessments,” she explains, “but secondary school,” she says.
it’s essential to identify their needs
essential to itentify
their needs so that “Without a diagnosis, their
so that schools and families can schools and familiies needs aren’t met and they’re
help them. The younger they get a can help them” expected to conform and fit in.

www.autismeye.com Au t i s m | e y e I s s u e 4 5 21
 Assessment

It can be too much for them.”

Case study – child: She explains that a child
‘It’s had a huge impact on my mental health and doesn’t necessarily need a
Unlocking early that of Alfie’s brothers’
diagnosis to qualify for an
Education, Health and Care Plan
access to assessments. Jamie Thompson, from Newcastle upon Tyne, is mum to three boys. Her son Alfie showed (EHCP), which is a legally-binding
challenging behaviour as soon as he started school. document that outlines a child or
Wellbeing’s new dedicated website offers advice, resources and tips around autism and
“He was hyper, he had no concept of fear or danger and he couldn’t engage with learning,” teenager’s special educational,
ADHD. We are based in locations across Essex, with a team of Occupational Therapists,
Speech & Language Therapists and Consultant Paediatricians.
she explains. “It got much worse when he was about eight, when I separated from his dad. He health and social care needs.
became aggressive and was often taken out of the class for being disruptive.” However, there does need to be a
Our resources are ideal for: We offer self-pay options for both The school maintained that Alfie’s problems were down to issues at home. But Thompson, clear explanation and analysis of
• Parents and carers of children ASD and ADHD assessments to allow knowing there was neurodiversity in the family, insisted that autism was a factor. the child’s difficulties – which
• Adults with autism or ADHD you to choose the option that works Surprisingly, the school failed to put Alfie forward for an EHC Plan until he was ten (after would, in any case, come through
• Children with autism and their peers. best for you. he had trashed classrooms) and he was finally added to the autism assessment waiting list in various assessments.
October 2020.
Last year, after waiting 15 desperate months, Thompson sought help from a private Benefits of a diagnosis
psychiatrist, who diagnosed Autism Spectrum Disorder (ASD), attention deficit hyperactivity for adults
disorder (ADHD) and oppositional defiant disorder (ODD) and prescribed medication. Psychotherapist Ruth Millman,
Unfortunately, Alfie’s behaviour is still aggressive and occasionally violent. Even though course leader at the New School of
Thompson has paid for the diagnosis herself, her local CAMHS refuses to support the family Psychotherapy and Counselling in
Visit our website at until they reach the top of the NHS waiting list. London, has many years’
www.wellbeingasd.co.uk However, they are receiving help from social services. experience working with
“I’m a single parent and it’s had a huge impact on my mental health and that of Alfie’s neurodiverse clients.
Part of the Provide Community brothers,” Thompson admits. She says that receiving an
More than just healthcare Registered in England and Wales No. 102546651 “I often have to ask my parents to take him to give us some respite.” autism diagnosis usually affects
people in two areas – wellbeing

Abbey School offers high quality

residential placements for children
and young people with autism
Day and residential placements are available in a beautiful
community setting in the heart of Chester city centre.

O
ur high staff to pupil ratios provides continuous
support and a kind and nurturing environment.

O
ur fun-filled programme of waking day activities
extends school-based learning and encourages pupils
to use a range of social and academic skills.

O
ur personalised, evidence-led approach supports
each pupil’s development and wellbeing.

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To find out more, please contact our Principal, Dr Katy Lee at

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22 Au t i s m | e y e I s s u e 4 5 2 0 2 2 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 4 5 23
 Assessment Advertisement feature

and accessing support. “It helps
people to understand themselves,”
she explains.
“Some adults may have been
waited a long time to find out
what’s wrong. We see people in
their sixties and even older.”
Elaine Nicholson adds that
Autism diagnosis
because all new clients undergo benefits of a diagnosis are:
an in-house assessment, staff are Learning effective management
able to meet their needs. techniques for your symptoms,
“We look at all areas of their lives meaning that you are able to deal

can change lives –

misdiagnosed with mental health some adults are content with just – their sensory issues, with uncomfortable situations in a
problems in the past, so it’s a an assessment confirming that they communication, ability to self- much more controlled way
huge step for them to discover the probably have autism. regulate and to understand and Getting access to the right type
true nature of their problems.” “It can also be for legal express emotion,” he explains. Shaji Rajamony: of therapy that will help you learn

for the better

Support at work
Learning they are on the autism
spectrum, she continues, means
they can also access support in
the workplace (because employers
are expected to make ‘reasonable
adjustments’ in order to
accommodate a disability).
The person’s family can also
feel validated by knowing their son
or daughter’s struggles are not the
result of poor parenting.
“Long waiting lists mean people
can spend years in limbo,” Millman
points out. “It’s distressing and can
make someone’s mental health
much worse.
“Adults may already have
reasons. Sometimes an autistic
person gets into trouble and a
formal diagnosis would help them
in court,” she continues.
“For example, Gary McKinnon,
who hacked American security
systems, got an autism diagnosis
from Professor Simon Baron-
Cohen, which got him off the hook.”
Voyage Care runs care homes
and supported living for adults with
learning disabilities and autism
across the UK.
Shaji Rajamony, specialist
implementer in quality
management with the organisation,
says that a number of Voyage
Care’s clients are still waiting for a
diagnosis. However, he says that
“Detailed assessments are essential. “Detailed what your personal trigger points
If you meet someone’s needs, they assessments are are and how to avoid or minimise
can have a meaningful life.” essential” these
Ability to communicate with
CONTACTS others, to explain how you feel and
Alderwasley Hall: www.senadgroup.com get appropriate emotional support
Ambitious about Autism: the charity offers a free online
toolkit to help parents navigate their child’s early years, ‘I knew I was different’
from autism assessment to the first day of school: Robert, one of our key employees,
https://www.ambitiousaboutautism.org.uk/information- explains the difference that a
about-autism/early-years/parent-toolkit confirmed diagnosis made to his
Elaine Nicholson: www.elainenicholsonmbe.co.uk life: “I knew I was different at
Healios: www.healios.org.uk school. The way the other children
NSPC: www.nspc.org.uk acted confused me. I became
Owl Therapy Centre: www.theowltherapycentre.co.uk more and more isolated and at 13
Re:Cognition Health: www.recognitionhealth.com I had a breakdown. Getting my
Voyage Care: www.voyagecare.com diagnosis was like a light going on
Wellbeing: the company has an autism information in my life. I understood why I felt
website: www.wellbeingasd.co.uk like I did and, what’s more, I was
able to communicate this to others
who then understood themselves.
“It wasn’t a straight line to the

The best
life I lead now, but my diagnosis
certainly meant that I could put in

Ask most autistic people what the most

place all the adjustments I need.

assessment and important point was in their journey, and

Without this I am not sure where
my life would have taken me, but it

therapy services for they will tell you it was receiving a diagnosis
would have been a lot less fulfilling
and much more stressful. I am so

children and adults

At Autism Unlimited we meet
many people in the autistic
Supporting the autism community who tell us about their
community nationwide relief at being diagnosed and that
suddenly they understand why
they feel the way they do. Why all
of the situations that made them
feel anxious and the personality
traits that made them feel different
are explained.
Not everybody who takes the
tests is diagnosed as autistic, but
this in itself is a big step forward. It
gives them the opportunity to
continue investigating what other
explanations there could be for
them and lead them towards the
right solution. However, for those
who receive a positive autism
diagnosis it can be the first step
towards a rich and fulfilling life.
A diagnosis does not change
the fact that you have autism, but it
explains why your brain might work
differently to others. It means you
can get the right help and support
and the world suddenly becomes a
much more positive place.
Clinical research shows that
early diagnosis, intervention,
education and support can have a
hugely positive impact on autistic
people. They see their diagnosis
as a precious gift; one of
knowledge and the life story
making sense. Now they can start
grateful to have been diagnosed.”
Those who have struggled for
many years with unexplained
feelings and difficulties, can, with a
diagnosis, achieve great things,
things that may have seemed
impossible previously. With minor
changes and the right support and
by understanding how your mind
works, it opens the door to a world
of possibilities.
Everybody deserves the chance
to live their best life, to be fulfilled
and happy. An autism diagnosis
can change lives – for the better.
If you are interested in finding

Call us on 01242 571883 or visit I am so grateful to really live their life, set their own out more about an autism
goals and be confident in knowing diagnosis, contact us at
www.theowltherapycentre.co.uk to have been that they have the coping marketing@autism-unlimited.org
for more information diagnosed” techniques and systems to achieve Tel: 01202 483360
them. Some of the immediate https://www.autism-unlimited.org/

24 Au t i s m | e y e I s s u e 4 5 2 0 2 2 www.autismeye.com