Autism Eye Issue 31
Autism Eye Issue 31
Autism Eye Issue 31
What comes after education? people with autism and learning disabilities whose
premature deaths under the NHS have not received
Claire enough attention. In just the area covered by Southern
Home From Home Care builds services around individuals with complex needs Parents - We deliver fulfilled days Health, which ran the unit where Connor Sparrowhawk
Stockley Dr Judith
and empower your adult child. died, more than 1,000 patients with learning disabilities
• We create small groups of compatible individuals, who live with other small groups in Carrie Lennard Foster carer Orloff
We focus on their independence, or mental health problems died without proper
homely settings. Special needs Psychiatrist and
self-worth and new opportunities music teacher author investigation over only four years.
• We successfully support them to access and interact with the wider community. as well as creating homely, non We can only wait until promised improvements take
institutional environments. place in the NHS before families touched by autism and
• Individuals with different diagnoses and needs are empowered by our dynamic living learning disability can put their trust in it. In the
environments, which are non-institutional, inspiring and reflect the diversity of the meantime, we urge you to sign and share the petition
wider community. Teachers - We build on your
Dr Justin that Oliver’s family have launched to bring about
dedication and the life skills change. You can find it here:
• Individuals lead more fulfilled lives which satisfies all stakeholders: parents, commis- Williams
teaching that you have given to https://petition.parliament.uk/petitions/221033
sioners, staff and other professionals. Ian Uttridge Child and Steve Stockley
your students, who too often
• We support 80+ individuals in 5 separate locations, linked together through ONE TEAM Head of Children adolescent Manager,
transition into services where
Working, enabling our 350 staff to deliver effective care and support. and Families, psychiatrist Fosterline advice Gillian Loughran,
they regress. Together Trust service Editor
Home From Home Care offers a pathway away from more institutional care
Commissioners - For certain
• We are a specialist care service for complex individuals who may also have associated complex adults we are a proven Editor Gillian Loughran SUBSCRIPTIONS Online: go to www.autismeye.com, where prices are from
health and mental health issues. gillian.loughran@autismeye.com £16 a year for printed issues. By post: send a cheque/Postal Order for £20
alternative to a very high cost, (parents & carers) or £30 (organisations) to Autism Eye at our address, left.
more institutional service. As ap- Publisher Mark Hayes 20% discounts are available on renewing subscriptions – see our website.
• Accessing the wider community and living as part of an extended family ethos attracts ISSN 2046-424X mark.hayes@autismeye.com
placements from over 38 commissioning authorities - with the active support and propriate, we undertake free de- © Hillbury Publishing Ltd 2018. All rights reserved.
Hillbury Publishing, 25A Hillbury Road, +44 (0)20 8133 6259 IMPORTANT: subscribers are reminded that Autism Eye is circulated to named individuals only, on
participation of families. tailed assessments. the understanding that material contained herein is not copied, reproduced, stored in a retrieval
London SW17 8JT, United Kingdom Sales Anne Driscoll system or otherwise disseminated, whether inside or outside subscribers’ homes or organisations,
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Autism · Epilepsy Contact us on 0800 587 0372 www.autismeye.com Designer Mark Richardson
may render the subscriber liable to further proceedings. The views expressed in articles are not
neccessarily those of the editor, publisher or printer.
Sensory Needs · Mobility Needs & PMLD www.homefromhomecare.com No information published by Autism Eye is to be construed as medical advice. Neither the editor, publisher, nor contributors take any responsibility for
any decision taken by readers as a result of information contained herein. If you need medical advice, please seek it from a suitably qualified practitioner.
Our blog - www.createdbyparents.com
www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 3
In this issue
On the cover
Since 1987, Ruskin Mill Trust has developed 10 It’s a girl thing too 10
New research has found that girls show increased
its unique Practical Skills Therapeutic Education signs of autism in adolescence. Are they simply
method, working with young people with better than boys at masking it when they are
younger, leading many to remain undiagnosed?
complex behaviour and learning difficulties and
disabilities, including autistic spectrum conditions, Features
and whose needs cannot be met by mainstream 06 Why the NHS must change
education. The heartbreaking story of how yet another young
person with autism, 18-year-old Oliver McGowan,
Our five centres for young people aged 16 to 25 died while in NHS care. His mum and dad, Paula
and Tom, are campaigning to ensure that the
are based in Birmingham, Sheffield, Stourbridge, same thing doesn’t happen to others. They have
Pembrokeshire and Gloucestershire and offer launched a petition to make autism and learning
disability training mandatory for NHS staff. Please
both day and residential placements. Here, read their story and sign the petition.
students follow a craftwork and land-based 15 Legal Eye
curriculum through three stages: overcoming Douglas Silas and James Isaac detail ways in
6 15
which parents can use the law to enable a more
barriers to learning to becoming skilled holistic view of their child’s needs to be taken
before stepping out and contributing to their when creating an Education, Health & Care Plan.
communities. 18 Art and soul
Here’s something to tap into (or bang into with
a big drum if you prefer)... Whether it’s music,
drama, dance or art, letting your child’s artistic
side flourish could be a great way to help them
improve social skills and promote physical,
intellectual and emotional development.
Lifelong residential care is offered at Clervaux
24 More care to spare
in Darlington. Here, residents can benefit from The expertise that parents of childen with autism
36 31
our unique holistic approach to care, as well develop could make them ideal as foster carers
for other children with the condition. One couple
as participate in meaningful work and training, adopted a boy with suspected autism they were
according to their needs and wishes. Please fostering because they bonded so strongly with him.
must change
and Tom, he left a sister, Heather,
23, and a brother, Adam, 26.
His death from neuroleptic
malignant syndrome (NMS) is one
of a number of high-profile NHS
tragedies involving people with
learning disabilities.
When autistic teenager Oliver McGowan was
All died in NHS care
admitted to hospital, he and his family told As well as Oliver, Josanne
Wadsworth, 31, Richard Handley,
doctors not to give him an antipsychotic. 33, Connor Sparrowhawk, 18, and
Judith Benn, 54, all had learning
But they went ahead anyway and Oliver died. disabilities and all died in NHS care.
her campaign to ensure all NHS staff receive question marks over the quality of
their care.
training in autism and learning disability And earlier this year the
Learning Disability Mortality Review
(LeDeR) highlighted how those with
Paula and Tom McGowan watched learning disabilities die 15-20 years
son Oliver go from being a
paralympian hopeful to lying intubated
and clinging to life in hospital. Until people like
He was suffering from a severe Oliver and
allergic reaction to olanzapine, an
antipsychotic medication. Connor are seen as
Southmead Hospital in Bristol gave fully human, health
him the drug against his own
wishes and those of his family. This care is not going to
followed Oliver being trialled on an improve, sadly”
antipsychotic a year earlier and
reacting badly.
As Oliver was lying in his earlier than the general population.
hospital bed on a life support Dr Sara Ryan, Connor
machine, doctors told his parents Sparrowhawk’s mother, fought a
he would never walk again, be lengthy battle after her son
blind and have no memories or Oliver McGowan was “just a nice drowned in a bath when he was
language. They took the young lad”, below left. After he left unsupervised in an NHS care
heartbreaking decision that their disability and autism training was admitted to hospital and given unit. She says: “Until people like
18-year-old son’s life support could mandatory for all NHS staff. It had olanzapine his appearance changed Oliver and Connor are seen as fully
be withdrawn. gathered more than 44,000 rapidly. His father says he developed human, health care is not going to
signatures by the time this issue of a blue pallor around his eyes and improve, sadly.”
Lasting NHS change Autism Eye Magazine went to press. mouth, but doctors said “it was the
But the family is now working to Paula, a primary school teacher, lights”. Then, two days later, when Hospital passport ignored
ensure that Oliver’s death sparks and Tom, a senior RAF officer, say the family said his appearance Paula says she gave staff Oliver’s
lasting NHS change. they have been “overwhelmed” by looked swollen they were told “it was hospital passport, describing how
As well as being impacted by support, especially from medics. probably water retention”. The inset his autism and learning disability
autism in a relatively minor way, Paula says: “I’ve been approached picture, right, shows Oliver’s right affected him and detailing
Oliver had epilepsy, a mild learning by many, many doctors and hand, where a cannula was removed reasonable adjustments needed.
disability and cerebral palsy. Paula nurses now, all saying the same and the wound became infected. His However, she says it was “placed
believes that if Southmead Hospital thing – that they support father says that Oliver contracted in a drawer without a glance”.
had made reasonable adjustments the petition, they Methicillin Sensitive Staphylococcus Among the problems Oliver
it would have saved his life. believe that they Aureus (MSSA), a bacterium on the encountered during his hospital
In the wake of the tragedy, want the skin, “for no reason” and thinks the stay was having several doctors
Paula and husband Tom started a training and wound was the source. speaking to him at once while
petition to prevent avoidable they need using complex language. Also,
deaths by making learning the training Paula says when her son wanted to
6 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 7
Visit us at the Insight
TES SEN Show 2018
5 – 6 OCTOBER 2018
THE BUSINESS DESIGN
CENTRE, LONDON
You will find us at stand P23
Happier days:
Oliver with
brother Adam
and sister his behaviour when he the drug was “one of the
Heather, above, woke. However, the contributing factors” in Oliver’s
and having family, who live death. She told Paula she “might
fun with mum between Bristol and have been right” to warn her about
Paula, right. New South Wales in the drug.
A World of Possibilites Top right: a
young Oliver
Australia, say Oliver did
not have challenging
The doctor is reported as
saying: “I take responsibility. I
surfing in 2008 behaviours. prescribed olanzapine, but I don’t
He never woke from the know that I’m responsible for
SpaceKraft design and Oliver was just a sedation as he developed the NMS anything else that happened.”
that saw his brain swell after the The Department for Health and
install a full range of nice young lad. antipsychotic. Social Care (DHSC) say they want
He played for the
sensory environments.
Paula adds: “Oliver was just a staff trained to support people with
nice young lad. He played for the learning disabilities and autism.
cerebral palsy England cerebral palsy England football
football squad and squad and was training to be a Consistent approach
To find out more or to was training to be
paralympian.
“He was the president of the
The DHSC commissioned both
Skills for Health and Health
receive a free catalogue a paralympian” school council at college. He was
a school prefect.”
Education England, which oversee
the training of NHS staff, to
please call us on: walk around, a normal part of his Gravely concerned
develop core skills and a
consistent approach to people with
seizure activity, he was restrained The mother is “gravely concerned” learning disabilities. This saw a
www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 9
Research
10 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 11
Research Speaking through pictures
Further reading
Dr Heather Stone
Wodis’s book, A patented ‘high-tech’
Girls with Autism Communication Aid
Becoming Women, uniquely developed
investigates the
experiences of
for non-verbal
seven women as they communicators
transition from childhood to familiar with physical
adulthood. Education, sexuality, Picture Exchange and
career paths and social networks
are among the things that impact based on Drag and Drop with voice output.
their lives – but a supportive family
and a diagnosis in childhood help
them to deal with their challenges.
Jessica Kingsley Publishers,
£13.99/$19.95 paperback ● Familiar and easily recognisable
to physical Picture Exchange
In addition, “the gender users
expectations of the parents may
have had an influence on their
reporting”. she says. ● Choice of popular image sets:
In her book Girls with Autism
Becoming Women, Dr Heather
PCS, SymbolStix or Widgit
Stone Wodis investigates the
experiences of seven women as
they transition from childhood to
● Drag & Drop encourages
adulthood. Stone Wodis, who lives “intentional” communication
with obsessive compulsive
disorder (OCD) and is visually and more control
impaired, says growing numbers
of women are now being
diagnosed later in life. ● Simple and quick to configure
and personalise
Reflect on their condition
And Stone Wodis, who as a result
of her visual impairment and OCD
describes herself as neurodivergent,
● Ability to add voice recording
says seeing one of their own and digital photos , e.g. family,
children diagnosed is often the
trigger that compels women to
friends, carers etc.
reflect on their own condition. Chicago, says this can see autistic Like mother,
She says: “Their child gets Something that teens marginalized as they begin like daughter:
diagnosed and they start to realise to struggle with everyday aspects author Dr
and relate to a lot of the experiences she used to do of life – such as flirting with the Heather Stone
their child has gone through. when she was seven opposite sex. Wodis believes
“And then it gives them pause to growing Available on Windows
be like, ‘Wait a second, I used to and was fine, now, at Comfortable to them numbers
10 Tablets or as
do this. I didn’t talk until I was nine. 14, when her friends “They see all their peers doing it of women
Software Only
I was obsessed with pink stuffed (flirting) effortlessly and so then are being
animals. Wait a second – this are going on dates, they start to retreat into what is diagnosed with
seems a little odd”
FREE
seems really familiar.’” comfortable to them, whether it be autism later
Stone Wodis is unconvinced by sitting in a rocking chair for hours in life after
the notion that autism appears or brushing their doll’s hair. recognising
later in girls; instead, she believes pathology or is this just kids’ stuff’? “And at 14 brushing a doll’s hair symptoms in 30 DAY TRIAL
their more subtle symptoms simply “And as they grow older and is no longer socially acceptable or their autistic AVAILABLE FROM OUR WEBSITE
go unnoticed. relationships and social norms appropriate. So something that she children that
She says: “It becomes more
apparent and obvious (in
become more complex, they have
increasing difficulty keeping up
used to do when she was seven,
eight and was totally fine, now, at
they themselves
showed in
www.speaks4me.com
adolescence) because when with it.” 14, when her friends are going on childhood Tel: 044 (0)330 555 0220 Email: contact@speaks4me.com
you’re a kid people are like, ‘Is this Stone Wodis, who lives near dates, seems a little odd.”
12 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com
Advice
Legal eye
Many people are unaware that, within the new
special educational needs framework, parents can
Empowering the SEN community since 1992 use specific law covering ‘Healthcare’ and ‘Care’ –
and a new National Trial may help, too. Report by
5-6 October 2018
Douglas Silas, a
solicitor, and James
Isaac, a SEN
Douglas Silas and James Isaac
tessenshow.co.uk
Headline sponsor Gold sponsor Spotlight Theatre sponsor Bag sponsor
PSYCHOLOGY Many parents of autistic children EHCP), or in appeals to the Special The problem
DIRECT with healthcare or social care Educational Needs and Disability Prior to the Children & Families Act
needs often find these needs (SEND) Tribunal, against the (C+FA) and a new SEN Framework
Supported by Event partners ignored in educational parts of an contents of an EHCP. in September 2014, it was only
Education, Health & Care Plan The purpose of this article is to possible for a Local Authority (LA),
(EHCP). This may be as part of the show how existing law and and subsequently a Tribunal, to
EHC assessment process (for changes to the appeal process consider ‘educational’ needs and
example, in the creation of an may help them. provision in a Statement of SEN (as
14 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 15
Advice
The Tribunal
introduced a
National Trial, which
gives them additional
powers to make
recommendations
relating to health
and social care”
The future
Talking of the SEND Tribunal…
Importantly, from 3 April 2018,
the Tribunal introduced a National
Trial, which now gives them
additional powers to make
opposed to ‘non-educational ‘Health care provision or social recommendations relating to health
needs’ and ‘provision’). care provision which educates or and social care, as well as
However, by the very fact that trains a child or young person is to educational matters.
Statements were agreed by the be treated as special educational The type of issues they expect
C+FA and a new SEND Code of provision (instead of health care (following a pilot) are:
Practice (CoP) (as well as provision or social care provision).’ l The lack of identification/evidence
transitional and other regulations) As there are no definitions of from CAMHS (Children and
were to be replaced by ‘educates’ and ‘trains’ within the Adolescent Mental Health Service)
‘Education’, ‘Health’ and ‘Care’ Act, whether provision is to be – for example, the need for CBT
Plans, it gave people hope that considered as such will need to be (Cognitive Behavioural Therapy)
LAs and Tribunals would now decided on the facts of each l The lack of social care evidence
16 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 17
Therapy
The arts – music, drama, dance and art – ‘The “fun” aspect of
creative activities is Most people
can reach deep into hearts and minds, what makes them such
a useful tool’ find something
regardless of individuals’ abilities. Parents, Chroma Therapies operates in the arts which they
throughout the UK and specialises
professionals and people with autism say in using drama, art and music to enjoy … They are
help people with autism, brain motivated to come
artistic pursuits can improve social skills, as injury, cerebral palsy or mental or Daniel Thomas of
emotional health issues. to their sessions,
well as physical, intellectual and emotional
Chroma Therapies:
Daniel Thomas, joint managing creative activities are
which is an excellent
development. Report by Fiona McNeill
director of the organisation and always geared
himself a music therapist, says that towards achieving place to start”
the ‘fun’ aspect of creative targets, he says
Years ago, a well-known brand of with people on the autism spectrum activities is what makes them such
lager proclaimed itself ‘the beer believe that creative activities such a useful tool. “Most people find towards clear goals that have been
that refreshes the parts other beers as art, drama, dance and music are something in the arts which they tailor-made for the individual. They
cannot reach’. Its amusing TV the most effective way to ‘reach’ enjoy,” he explains. “Because of will gear activities towards helping
advertisements showed policemen, someone with ASD. Using them in this, they are usually motivated to clients to achieve these targets.
poets and pets performing a therapeutic setting, practitioners come to their sessions, which is an For example, a client might
amazing feats after swilling a say, can improve social skills and excellent place to start.” need help with the mechanics of
mouthful of the stuff. In a similar promote physical, intellectual and Even so, Thomas stresses, speech. Working with a music
way, many specialists who work emotional development. therapists are always working therapist and playing the recorder Touches of colour: Options pupils take part in an activity for Arts Week in May
18 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 19
Therapy
‘Through improvisation,
they are teaching
themselves things
I couldn’t possibly
teach them’
The Improvise Approach is a way
of encouraging children with
profound disabilities to make music
and have fun. It was developed by
special needs music teacher Carrie
Lennard, from west London, who
says it is also very effective for
those at the higher-functioning end
of the spectrum or even
neurotypical people.
Her pupils use iPads and the
ThumbJam app, which allows
people to devise music using a
selection of different instruments,
rhythms and even special effects.
Lennard adjusts the settings so that
only certain activities are available
and encourages children to play
www.rombipuzzle.com around with the touch-screen.
admin@rombipuzzle.com “They learn to understand cause
and effect, the change of notes
affected by moving their fingers (or
https://www.tessenshow.co.uk/exhibitor-list/access-1st/
whatever part of the body is most
www.tessenshow.co.uk
Grant Manier: the artist, who has autism, loves to shred paper and includes it in his artwork effective for them, for example,
20 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 21
Therapy
ABOUT PECS
ARE YOU
N
TRAINED I
The evidence-based Picture
foot, chin or elbow) and a
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Exchange Communication
S
Music triggers
C
growing realisation that the
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P
sounds they are creating are
rapidly teach communication
working beautifully with the
extraordinary
skills to those with limited
functional speech. The PECS® music backing-track,” she responses across the
explains. “Through
Protocol is successfully utilised
improvisation, they are teaching
individual’s physical,
in learning environments by
hundreds of thousands of themselves things I couldn’t personal, cognitive
possibly teach them.”
professionals worldwide. Carrie Lennard:
the therapist is Earlier this year, post-
and social demeanour”
passionate about the graduate students from The
possibilities of using Royal Academy of Music ran a
music with people series of workshops with people with autism and other
with autism Lennard’s pupils, who all had disabilities. “Music is a universal
severe or complex needs. “My Making music: one of Lennard’s language which reaches into
groups were totally unfazed at pupils using the ThumbJam app people’s hearts and minds,
regardless of our language,
being asked to improvise, to background, culture or
CONTACTS conduct each other or choose capabilities,” she says. “It triggers
l Chroma Therapies: www.wearechroma.com different instrument sounds,” she extraordinary responses across the
l Improvise Approach: www.improviseapproach.com says. “The RA students were blown individual’s physical, personal,
us lO utcomes First: The group’s monthly help sheets on art away by the response and cognitive and social demeanour.”
e t
se 9 a therapy offer advice for parents and carers who look capabilities of my students. It was The Improvise Approach is
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More care
There’s no doubt that bringing
up a child with autism is as
challenging as it is rewarding, and
many people discover strengths in
to spare
the process that they didn’t know
they had.
They might not be able to prove
it with, say, an NVQ in Handling
Meltdowns in a Public Space or a
PhD in Pushing for a Diagnosis.
But even so, caring for someone
on the spectrum inevitably Some children with autism
develops a wealth of practical and
emotional skills, which can be and their parents go
useful in so many areas of life.
This expertise makes such through the often-
parents ideal foster carers for kids
who have autism and other special traumatic experience
needs, says Ian Uttridge, head of
Children and Families at charity of confronting the
world of fostering.
Together Trust. His organisation
provides respite, special education,
fostering and family support in the
north-west of England. But who better to
Parents are more expert help them than
“There are a lot of people out there
with a lot of experience in looking
other families
after someone with additional
needs,” he says. “They might not
touched by the
think they’ve done anything special
because they’ve just been getting
spectrum? Fostering
on with bringing up their own By Fiona children can be
children. But time and time again, I a really rewarding way
come across parents who are more McNeill of life and is a lot more
expert than the professionals.”
The number of children in flexible than people
England and Wales being looked
after by social services is might imagine”
increasing, Uttridge explains, by
roughly 6 or 7 per cent each year.
However, there aren’t enough
experienced foster carers, he says,
to cope with this demand.
Gradual process
“We want to encourage people to
come forward,” he continues.
“Fostering children can be a really
rewarding way of life and is a lot
more flexible than people might
imagine. Placements can be short
or longer-term and fit around your
existing arrangements. And we
wouldn’t expect new carers to
suddenly look after someone with
complex needs.”
Becoming a foster carer is a
gradual process with lots of
support, he says, so there is plenty
of time for applicants to ask All smiles: Steve and Claire Stockley with
questions or pull out if they decide Dan, who they fostered and then adopted
it’s not right for them.
24 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 25
Fostering
Could you provide stability, encouragement and warmth?
TOGETHER
Training takes place in the
prospective carer’s home and
usually takes from three to six
months, depending on people’s
TRUST AD TO
requirements and personalities.
Anyone may apply to be a carer
regardless of their age, sexuality,
nationality or level of education, and
single people are just as welcome
as those in long-term partnerships.
COME
New challenges
Understandably, people may have
reservations about fostering,
Uttridge admits.
If they’ve raised their autistic son
or daughter to adulthood, they may
Make a difference to a child’s life today, foster with our charity. be reluctant to take on someone
else’s child and start again with
Specialist dedicated support. Paid respite. Annual holiday new challenges.
But, he points out, because
foster carers are a little more
detached than birth parents, they
0800 05 222 50 www.togethertrust.org.uk can often employ a more practical
Registered charity no 209782 and problem-solving approach.
There exists a financial incentive
and foster carers are paid a
starting rate of approximately £300
Events
per week, though this varies. This
income is a plus for parents who
Calendar
Diagnosis
Therapies &
Resources
& Accessories
Inspiration
& Good Ideas
Nevertheless, Uttridge says, most
Care Approaches
people foster for altruistic reasons.
www.autismlinks.co.uk
Research
Services & Publications The Local Offer
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Fostering Advertisement feature
Different behaviours
Many foster parents will recognise
and experience lots of different
behaviours exhibited by the
children they look after, including:
l Lack of social interaction
l Lack of verbal and non-verbal
communication
l Creation of obsessions and
routine
l Sensory differences and
processing
l Unable to process what is being
said
A child who has experienced
neglect or abuse will use coping
mechanisms. Dan has increased
aggression and anxiety, but only
vents his anger at certain “safe”
‘We wanted to help’ with bringing up your own child. He “We want to about his experience of fostering and later No grey areas
Steve Stockley is the manager of We wouldn’t also suggests that people don’t get encourage
adopting his son, Dan. He urges more people Living with autism is not easy and
Fosterline, a free, government- too hung-up on whether a foster people to come nor is fostering. Dan sees the world
expect new
funded advice line for foster carers
or those thinking of becoming one. carers to suddenly
child has special needs, as all
children in care will probably have
forward”: Ian
Uttridge of
to think about fostering as a career choice with either a “yes or no code”
applied to all situations – there are
He’s also been a foster carer behavioural issues and need Together Trust no grey areas.
himself for the past 12 years. look after someone kindness and understanding says more I have fostered for over 12 years As a family we have had to
He got into fostering when he with complex needs” whether they have autism or not. foster parents and I manage Fosterline England – Sometimes adapt and change our
and his wife Claire became friendly “People always ask how we can are needed as the free, confidential advice and environment, both physically and
with a parent at their daughters’ bear to let the children go once the number of support service for current and children in care psychologically, to support Dan
school. “She was a foster carer after 11 children over the years and they’re ready to move on,” Stockley children being prospective foster parents. exhibit autistic traits and other children. It can be
and she told us a bit about it. One specialise in caring for children says. “The answer is, it’s easy. looked after by In 2010, my wife and I fostered a frustrating, and at times restrictive.
evening we went round there and under 18 months old. They became You’ve watched them develop and social services four-week-old baby boy following his which in fact are often Having a routine, exploring
met a young man she had looked so attached to one boy called Dan grow and you know they’re moving increases first open heart surgery, who later attributable to an coping mechanisms and
after,” Stockley explains. “He was that they adopted him. In addition on to a permanent home where became our adopted son, Dan. understanding the issues faced by
quite friendly and we had a bit of a to heart problems, Dan, who is they’ll be loved. The pleasure and We noticed that Dan displayed attachment disorder” the child all help. It’s important to
laugh about how he liked drinking now eight, has sensory processing self-worth you get from helping some slightly unusual behaviour, always remember that what Dan
and bodybuilding. disorder and suspected autism. them is immeasurable. Sometimes which some professionals exhibits is not bad behaviour, it is
“When he’d gone home, our “People say Dan is lucky to the new families keep in touch and attributed to the lack of initial as an autistic spectrum disorder. just a different behaviour.
friend told us a bit more about his have us, but I don’t see it that send us photos or visit. It’s like emotional attachment he received Sometimes children in care With all things considered,
life and the terrible abuse he’d way,” Stockley points out. “We we’ve got virtual grandchildren all at birth, whereas others viewed it exhibit autistic traits which, in fact, Dan is just Dan and everyone
gone through as a toddler. When think we’re lucky to have him. He around the country.” are often attributable to an loves him; he enlightens and
we left, me and my wife sat in our has given us so much joy in return, attachment disorder. As we’d enriches our lives, he cements
car and welled up. We decided more than we could ever give him.” Delivered by: suspected, Dan was later what we are as a family and for
then that we wanted to help Prospective foster carers need CONTACTS diagnosed with autism. that we’ll always be grateful.
children in similar situations.” to be realistic, he cautions, as l Together Trust: www.togethertrust.org.uk The National Autistic Society To enrich your life as well as that
Stockley and his wife, who live there are good and bad days with lF osterline is run by the charity Foster Talk: define autism as “a lifelong of a child in care, call Fosterline
in the West Midlands, have looked fostering, just as there would be www.fostertalk.org developmental disability that today on 0800 040 7675.
28 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 29
Advertisement feature Education
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Education
The issue of
exam stress has
been compounded for
autistic students as
GCSEs have become
less modular, with
less of an emphasis
on coursework”
32 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 33
Education Advertisement
Xxxxxxxxx
feature
Autism no barrier
What a grade achievement for Nat and Martin
Nat Dudman, 15, was Sussex to study aviation
told in his mainstream engineering.
to exam success
school that he would Another successful
never be able to take student at the school
exams. But now he was Martin Pullen, who
is celebrating after received a 6 (equivalent
receiving good results to a B) in his Fine Art
in his GCSEs at LVS GCSE and will now go
Hassocks, an autism on to study art at East How LVS Oxford and LVS Hassocks enable
specialist school in West Surrey College.
Sussex that he joined students to shine in their academic results
four years ago.
He received a B and The prospect of sitting exams is
two 4s (a mark of 4 in the daunting for all students, but for
reformed GCSE grading young people with autism the
system is equivalent to anxiety can be so overwhelming
a C). The B was for ICT that exams come to represent
and the 4s for maths and impossible obstacles. However,
English language. with the right support from teaching
He now plans to staff, exams can be an opportunity
return to the specialist to thrive and take big steps on the
school for another road to an independent future.
year to study for more LVS Oxford opened in 2014 and
exams before going to in 2016 produced an impressive first
Northbrook College in Celebrating success: Nat Dudman, left, and Martin Pullen set of GCSE results. Five students
sat exams and every grade was in
the A* - C category, including a
a question has been posed and need to think visually can all come third at A* - A grade. It allowed
finding it hard to extract the right An autistic into play when it comes to autistic students to move on to mainstream Top left: exam gone on to East Surrey College.
information to write the answer.
child may find
pupils and exam pressure. colleges such as Oxford Tutorial Our aim is to success at LVS Other students stayed on at LVS
“In terms of maths, if an autistic “I’ve known autistic pupils who College and Abingdon & Witney Hassocks led Hassocks to continue to gain the
pupil has to show their working that it hard to move on could tell you the exact page of a College before moving into work. prepare students Steven Bagnall qualifications and social skills they
can be tricky – they may know the
from a question they
line of dialogue from Shakespeare, for independent to study at need to live independent lives.
answer but not how they got there. but not the significance of it,” she Excellent GCSE results Northbrook They chose from exam options
“And in terms of focus, an can’t answer to the says. “We have to remember that The school followed this in 2017 futures and to take College. Above including additional GCSEs and a
autistic child may find it hard to
next – so it’s a self-
for each autistic child exam with another excellent set of GCSE their place in society” left: Holly range of A-Levels and BTECs to
move on from a question they can’t preparation is a personal issue, but results that saw all papers graded Balchin’s exam ensure they have the most suitable
answer to the next – so it’s a self- perpetuating problem” preparation is crucial. A* - D. Head Girl Holly Balchin success at LVS qualifications for the next steps in
perpetuating problem. If they have “Do past papers with them, used her English, maths and an occupational therapist. Students Oxford earned their learning journey.
one bad day it could feel like their practise study skills, look at science grades, accompanied by can also take part in mindfulness her a place at With a maximum of eight
entire future is over.” interpretation skills, get them used sport and leisure and business and relaxation workshops, Henley College. students per class at each school,
Sarah says the issue of exam employers value life and work to time considerations, work with administration BTECs, to go on to providing additional techniques to Above right: a teachers and support staff are able
stress has been compounded for skills, not just exam results – so them on visual revision plans with Henley College to study Public deal with stressful situations. maximum of to offer learning programmes geared
autistic students as GCSEs have thankfully things are changing. plenty of breaks and then, of Services. At LVS Oxford’s end-of- Sister school LVS Hassocks’ eight students to each individual. LVS Oxford
become less modular, with less of “It’s important that we work course, there’s the day itself when term Celebration of Achievement, approach of individual calming per class at both Head of Centre Louisa Allison-
an emphasis on coursework. closely with parents and have they need to be in comfortable Holly said: “When I came to LVS strategies and a wide range of LVS schools Bergin explains: “Our approach is
“That’s why we approach ‘Plan common language to deal with clothing and know what to expect. Oxford at 14 I lacked confidence therapist support on site also paid allows for lots to empower learners with individual
B’ with students from an early age exam pressure in all settings and It’s communication and and hated school. Three years on I dividends, as pupils achieved of individual coping strategies and techniques
and offer things like BTECs that are calming strategies in place. planning ahead that will ultimately am confident, have gained excellent results in 2017. Ten attention for dealing with anxiety and
more coursework based. “Most importantly, we want our stand them in good stead academic skills, and am ready to students sat a range of GCSEs and sensory issues, and maintaining
“There are also apprenticeships, students to know that there are whatever happens.” start my new venture at college.” eight achieved all A* - D grades. focus and motivation while in
internships, many other options different routes to get where they Access for Holly and others to a This helped a number of lessons and revising for exams.
available – we explore all the want to be. After all, we have staff comprehensive and supportive students achieve places in “We acknowledge that exams
other routes into courses, college
and work.
who are taking degrees in their
40s. You don’t have to have all the
Further reading therapy team is a big part of LVS
Oxford’s successful approach to
mainstream education. One was
Steven Bagnall, who went on to
represent a change in routine,
leading to increased anxiety, so we
“We use mind maps and flow answers at 18.” The Parents’ Guide to exam preparation. As learners work take up a place in mainstream For more give learners lots of details about
diagrams with students, invite Educational psychologist Specific Learning towards their exams, they are education at Northbrook College, information go what will happen on exam day well
different speakers in and work Veronica Bidwell, author of The Difficulties by Veronica encouraged to access the team, West Sussex. Oliver Short also did to www.lvs- in advance. Our aim is to prepare
alongside companies like Auticon Parents’ Guide to Specific Learning Bidwell. Jessica including an in-house child particularly well in achieving all A* - oxford.org.uk or students for independent futures and
and Procter & Gamble that actively Difficulties, says that sensory Kingsley Publishers, psychotherapist, a nurse, a C grades, including a B in LVS www.lvs- to take their place in society, and
employ autistic people. These days issues, fine motor skills and the £13.99/$19.95 paperback speech-and-language therapist and Hassocks’ first art GCSE. He has hassocks.org.uk exams are a key element of that.”
34 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 35
Diet & nutrition
offers advice
disorder are very aware programmes. A child psychologists who
of changes in the with ARFID might specialise in this type
Fear of food
appearance or taste of only be able to accept of eating disorder.
their known foods, it is biscuits, crisps and For older children,
never a good idea to try possibly some bread, a specific reward-
and ‘hide and disguise’ if parents are lucky, to based or cognitive
healthy foods in their include in their packed programme might help.
Nearly half of all children on the child has never managed to move Don’t want it: if impact on the child’s health and display these behaviours:
autism spectrum are reported by on to solid food at all, but will only Some children food rejection on social functioning, especially One particular l A diet made up of very few
their parents to have a problem take milk from a bottle, or puréed is more than a at meal times. foods – often only 5-10 items,
with food acceptance. Usually, or smooth foods such as yoghurt. develop a passing phase Most children move out of this difficulty is that usually dry, beige carbohydrates.
their child will only eat a limited pattern of eating and is actually stage, usually by the age of five of schools’ ‘healthy l An extreme fear of new foods
range of foods. New food rejection a medical years or so, and will once again (the neophobic response). These
This sometimes starts in For other children the problem that is typified by disorder, you agree to try new foods. Some eating’ programmes” children will show an enhanced
Dr Gillian Greville- infancy with the introduction of might not start until later. They disgust and anxiety should seek children, however, fail to move disgust response to foods and
Harris is a consultant solid first foods. In these early might refuse more and more professional on. They develop a pattern of reflect a real fear of food and of will be unable to even put them in
clinical psychologist years the child will develop an foods as they go into a period of around foods” help to handle it eating that is typified by disgust being anywhere where new foods the mouth.
at the Birmingham idea of which foods they like, and new food rejection (neophobia). and anxiety around foods. might be offered. This response to l Foods are refused because of
Food Refusal Service, which tastes and textures they This is common in any child at they have accepted before. As food is now medically recognised as their sensory properties. This may
www.foodrefusal.co.uk can handle. around the age of two years. each new food is rejected, and Disgust response Avoidant and Restrictive Food include the look, taste, feel in the
The feel of solid foods in the This stage of rejection, the foods that were eaten in the past These children will only accept a Intake Disorder (ARFID)1. mouth and smell of food. This fear
mouth, or the need to touch food neophobia stage, is a time are pushed away, the dietary limited range of ‘safe’ foods. Any Based on our clinical can be so extreme that they will
foods, can be difficult for some when most children will refuse range of these children can other foods trigger a disgust experience, children who would gag or vomit when presented with
children. It could even be that the new foods, as well as foods that become very narrow. This has an response, a reaction that can receive a diagnosis of ARFID food they cannot eat.
36 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 37
Diet & nutrition
Specialist autism support
hungry, doesn’t seek out food, and
It is never a goes for long periods without
eating. The child might fail to gain
good idea to weight as expected. This is more
We support over 720 autistic people in the
try and ‘hide and likely if the child does not have
UK and have 37 specialist autism services access to preferred or ‘safe’ foods.
that are either accredited or working towards disguise’ healthy foods A limited diet can, in some
accreditation with the National Autistic in their safe foods” children, lead to nutritional
deficiencies. Surprisingly,
Society. though, this isn’t often the case.
l The child is likely to feel very Where there is a deficiency, iron-
anxious about situations involving deficient anaemia is one of the
We can support you in many ways, such as
food. They often have general most likely consequences.
at home, going out, finding education or anxiety and are fearful of change. This disorder is seen more often
employment. l The restricted diet may lead to in boys than girls because it is
problems with the child’s ability to linked to the extreme sensory
cope with school mealtimes. problems that are often associated
l The child will often eat specific with ASD.
to context – in other words, only
eating certain foods in certain Adapted from Food Refusal and
places. They might eat sausages Avoidant Eating in Children,
Enquire today REFERENCE
at school, but will not eat the
same sausages at home.
including those with Autism
Spectrum Conditions by Gillian
1
American Psychiatric Association (2013): Diagnostic l The child might not seem Harris and Elizabeth Shea.
0800 0353 776 referrals@voyagecare.com www.voyagecare.com and Statistical Manual on Mental Disorders (5th Edition, interested in eating. Parents often Jessica Kingsley Publishers,
Arlington, VA: America Psychiatric Publishing. report that a child never seems £16.99/$24.95 paperback
Autism
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pists, administrators, paraprofessionals, & families Office-199-203 Blandford Ave.
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38 Au t i s m | e y e I s s u e 3 1 2 0 1 8 87 mm
Asperger Syndrome, ASD
www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 39
An exciting
development will
be launched in October
– a purpose-built
facility for adults”
Come on over
someone on the autism spectrum, a lot of noise. adolescent psychiatrist and a
Familiar surroundings difficulty with empathy is arguably Unsurprisingly, many parents of senior lecturer at the University of
As a result, the investors working the most pervasive. Problems children with autism would dearly Aberdeen. He’s also the father of
with the senior management team understanding other people’s point love to help their son or daughter three grown-up sons who, between
to Our Place
have undertaken a project to build a of view or their feelings can affect develop greater emotional them, have Asperger syndrome,
new facility for young adults on a all aspects of an autistic person’s understanding. But is this possible? ADHD and dyslexia.
site next to Our Place. day-to-day existence. It can make And if so, how do we do it?
This takes advantage of the social interaction – and life in ‘Mirror’ research
familiar surroundings that our general – confusing and stressful. Williams is the man behind a well-
current young people have grown A child with ASD might not Autistic people publicised research project that
Our Place Schools offers individual care and to know and love.
The mission of Lakeside@Our
understand, for example, why
grandma wants to kiss them when
can be extremely looked at the functioning of mirror
neurons in people with ASD. Mirror
sensitive to emotional
education in a homely atmosphere – and Place is to make the transition for
young people to adulthood as
she visits, or why the man on the
bus was embarrassed when contagion – that is,
neurons, the scientists say, are
triggered when we see another
from October will provide adult transition too seamless as possible and to provide
a friendly, secure, respectful
children laughed at his big nose.
They might not realise that you picking up other
person performing an action,
activating the same area in our
environment where they can enjoy have to be ‘nice’ to someone if you people’s emotions” own brain. Put simply, if we see
Since its inception 10 years ago, a high level of independence. Here, want to be friends, or why the somebody jump for joy or shake
Our Place Schools has continuously they can be encouraged to realise
evolved and innovated. their potential and enjoy the best
Based in semi-rural Bransford,
near Worcester, Our Place
possible quality of life.
Residents will have their own
‘Learning to open their hearts is a way to self-soothe …
specialises in accommodating private postal address, so that to Empathy will gradually flow from that’
children up to the age of 19 with the outside world they are not seen
autistic spectrum and severe to be located in a care facility. Dr Judith Orloff (pictured The child should releasing. With practice, non-verbal time with
learning conditions. It provides Where appropriate, they may also right) is an American sit quietly, breathe this sensation should the autistic child. “The
individual and bespoke Care and have their own private entrance. psychiatrist and author deeply and place their become more familiar. point is to bring loving
Education plans to every child, The provision will be fully of several books on hand over their heart. “Learning to open energy into the home.
using the full range of skills and compliant with the requirements of the subject of empathy. They should then their hearts is a way to Don’t look at the autistic
experience of highly trained teams the CQC. She takes a spiritual think of anything they self-soothe so autistic kid as ‘sick’. He or she
of care, education, behaviour and approach, maintaining care about – maybe a kids can become more just communicates
therapy specialists. For further information that empathy originates person, a pet or a place comfortable with feeling differently. When the
Set in a secure 6.5-acre site with contact Lena Graham, in the heart. – and become aware love,” Orloff explains. child sees the family
a homely atmosphere, Our Place Our Place Schools. She suggests that of the sensations this “Empathy will gradually communicating with
supports its children to thrive in their Email: meetus@ children with ASD can generates. This could be flow from that.” their hearts rather than
development. This leads to reduced ourplaceschools.com improve their emotional meditation to connect anything: for example, It helps, she adds, if worry or hostility, the
The new adult facility at Our Place is on schedule for behaviours and levels of progress Tel: 01886 833378 awareness by trying the them with their heart heat, compassion or family members also try chances are greater that
launch in October 2018 previously thought impossible. www.ourplaceschools.com following simple, short energy... a sense of pressure the meditation and spend they will emulate it.”
40 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 41
Hericor-MRL
Therapy
42 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 43
Leisure
MOT your child’s draft Education, Health and Care Plan Ten tips for a
family outing
Education Lawyers specialist solicitors will check your child’s draft Education, Health and Care
Plan and advise if it meets the relevant legal requirements.
We will provide advice on how a draft EHC Plan can be improved so that the
provision and therapies meet all your child’s Special Educational Needs.
We can provide this advice either in writing or by telephone for a one-off fee of £295 (plus VAT).
Call us on 01452 555166 or email education@langleywellington.co.uk to arrange your MOT Amy Kelly offers advice for making a day
out together safe, successful and enjoyable
Education Lawyers is the dedicated Education Law department of Langley Wellington LLP Solicitors. The team is highly
experienced and skilled in providing legal advice and practical solutions in relation to Special Educational Needs cases. Have a plan venues make adjustments by, for
For over 25 years their lawyers have been providing legal advice to families throughout England and Wales. Prepare all members of your family instance, minimizing waiting lines
– particularly your child with autism and training or adding staff to
Education Lawyers get children with Special Educational Needs the support, provision and school they – with a plan of the day’s activities. assist individuals with autism If Fun with the family: try to take part
are entitled to with real positive results.
Explain your plan verbally and there are no designated autism- in community life, Amy Kelly urges
Visit us at www.langleywellington.co.uk | www.educationlawyers.co.uk through visuals such as pictures, friendly days at your desired
maps, social stories and schedules. location. Call the management few exposures. For example, sitting
Amy Kelly is mum to If you are visiting a museum, ask before your visit and ask how they through a movie in a cinema might
Langley Wellington LLP is a limited liability partnership registered in
England and Wales (registered number OC363475). Authorised and Danny, Annie and for a brochure to be sent to your can accommodate families who be challenging initially, but, with
Solicitors LLP Regulated by the Solicitors Regulation Authority. Ryan. Annie is home so you can walk your child have individuals with special needs. time and practice, it may well be
diagnosed with through the day before you leave not only doable, but enjoyable.
moderate to severe home. The more your child knows Safety first
autism, verbal what to expect, the more likely it is Research the venue before you Don’t be afraid to stand
apraxia, intellectual you will all have a great day. leave home and understand the out from the crowd
and developmental risk factors. Know where you are To have a successful day at the
disabilities and Create an outing toolkit going and what you can do to beach with my daughter, who has
general anxiety Before you walk out the door, pack prepare. If the space is out in the severe autism and other
disorder. Amy is also a bag with ‘tools’ your child may open and you know your child disabilities, her brothers and I
the director of Family/ need for a successful outing. This learned that we had to work
Bed seizure alarm Community Services toolkit should include together to keep her safe – and to
MP5-UT £170.00 for Devereux communication devices, a tablet Families touched enjoy the beach ourselves. We
ex VAT Advanced Behavioral for movies or games, sensory/
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blow up a small baby pool, her
Health, a non-profit fidget toys and other favourite brothers fill it up with ocean water
provider of behavioural items that will help soothe your right to good family life and we put her beach toys in the
healthcare. child. Don’t forget a change of pool. Sure, she’s 16 years old (and
www.devereux.org clothes. Having this toolkit can help outside the home” yes, it looks very different), but it
stave off undesired behaviours and works for our family.
Medpage Limited T/A Easylink UK is a family ran prevent a potential meltdown.
tends to wander, add a nametag Praise, praise, praise
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in our UK based factory. adult assistance, especially if you something that went according to
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For over 34 years we have manufactured anyone from a therapist to address Sometimes, even the best plans they did a good job. For instance:
specialist products to assist people in living the needs of your child with autism fail. If your outing is a day of family “I liked the way you waited
independently and to aid care of people with to a grandparent who can attend to leisure, accept that you may need to patiently when we were in line for
the other siblings when your leave early. Having this discussion the paddle boat.”
special needs. attention is required elsewhere. If with all family members will help
this level of assistance is not set expectations and prevent Advocate for your
Epilepsy - Our epileptic seizure monitors reliably available, the peace of mind that emotions from running high. child’s right to take part
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There’s so much more to see on our website £89.99 inc VAT New places, people and activities other disabilities have a right to good
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www.autismeye.com Au t i s m | e y e I s s u e 3 1 2 0 1 8 45
in association with
Resources
self-harm and emotional regulation. There popularity – largely due to and includes first-person accounts from
is some excellent advice on interventions children and adults who say this
and strategies that can help. Dave Hewett, editor of approach has been successful for them.
l Jessica Kingsley Publishers, this handbook” l Jessica Kingsley Publishers,
Associate Partner Partners Sponsor Media Partners Accredited by
£17.99/$24.95 paperback £18.99/$27.95 paperback
46 Au t i s m | e y e I s s u e 3 1 2 0 1 8 www.autismeye.com
There’s nothing more empowering
than helping someone communicate.
At Hesley Group we know the key to unlocking From Makaton Signing and Picture Exchange
behaviours that challenge is communication. Communication Systems (PECS) to more technology-based
It’s why our experienced and passionate Speech and approaches using tablets, we use a range of techniques.
Language experts work right at the heart of our multi- Plus continual assessment and sharing communication
disciplinary team. Creating a tailored approach around goals with the whole care team means we stop at
the individual to promote interaction, develop social skills, nothing to find the best way for the individual to express
encourage greater independence and build relationships themselves. And nothing is more empowering than that.
with staff, their peers and family.