Tackling the spectrum of autism

For the first time, the Cayman
Islands government is providing funding to help diagnose children with autism
and to track how prevalent the disorder is locally.

The government has earmarked
$181,000 to be split between the diagnosis of children with autism and on
counselling children who have been victims of sexual trauma.

According to the latest budget’s
annual plan and estimates, the number of children locally at risk for autism
spectrum disorders is 40 to 50, but the actual number of children with the
disorder in Cayman is unknown because it has never been tracked.

Samantha Tibbetts, who runs Hope
Academy in Grand Harbour, a school for children with special needs, says
Cayman, like the rest of the world, is becoming more aware of the disorder that
affected 67 million people globally.

“People are definitely becoming
more aware of autism and special needs,” she says. “As the world becomes more
aware of autism, Cayman is naturally going to follow suit. It is relatively new
as far as the research and development taking place for treatment and

Tibbetts, who is also chairman of
the Private Schools Association, said work is under way to try to get a better
idea of how many children in the Cayman Islands has autism. The public and
private schools have begun to collate numbers which should go some way towards
determining the extent of the problem.

One of the reasons for getting an
accurate figure of autism sufferers is insurance. Currently, the treatment of
autism is not covered by most insurers.

“The only way you can get the
insurance companies to cooperate is if you have the statistics,” says Tibbetts.
“Parents have to fight to get speech and occupational therapy for their
children; they shouldn’t have to fight for that.”

Insurance covers several childhood
diseases and disorders, but parents of children with autism find that their
kids’ needs are not being covered.

Shannon Seymour runs the Wellness
Centre, which has been tasked with setting up a panel of professionals to
diagnose and refer children with autism. At a meeting of parents, teachers and
medical professionals in May, she said: “This is a health issue. There should
not be any reason why a child with asthma can get a Ventolin inhaler paid for,
but a child with autism cannot get occupational therapy paid for.”

In the United States, 21 states
have passed legislation forcing insurance companies to cover the diagnosis,
treatment and services for autistic children. No such laws or regulations exist
in Cayman.

Cayman has a registry, completed in
September 2009, which shows there were 185 children with special needs in government
schools at the time. There were another 71 children at Lighthouse School, which
caters specifically to children with special needs, and a further 120 preschool
children on the education department’s Early Intervention Programme. However,
the number of children with autism and other special needs in private schools
and kindergartens is unknown.

It is also likely there are other
children, as well as teenagers and adults, who have never been diagnosed.

With the new funding, autism
diagnoses will be free, as compared to an average $2,000 cost in the past. With
a growing number of professionals on island who can diagnose, fewer parents
need to take their children overseas to get them diagnosed. Some, however, are
still forced to take children abroad due to a lack of trained teachers in
Cayman’s schools to care for and educate these children. Speech and occupational
therapies, when paid for privately in Cayman, can be cripplingly expensive.

Health minister Mark Scotland, in a
statement to mark World Autism Day in April, said the Health Services Authority
was putting protocols in place to screen and refer children with autism.

“The HSA has also started an
awareness campaign among public health nurses, paediatricians and private
medical professionals, led by its in-house speech and language pathologist.
Also, the Education Department’s Early Intervention Programme focuses on
increasing autism awareness among preschool staff. This is further supported by
private sector efforts from the Wellness Centre and the Special Needs
Foundation,” Mr. Scotland said in his statement.

Worldwide, the prevalence of autism
has increased tenfold in the last decade, but this is thought to be due to
better diagnosis and recognition of the disorder. More children are diagnosed
yearly with autism than with diabetes, cancer and AIDS combined.

The US Centers for Disease Control
and Prevention has called autism a “national public health crisis”. The CDC
estimates that one in 110 children in the US are autistic, up from its previous
estimate of one in 150.

The disorder is more commonly seen
in boys than in girls.

The Wellness Centre will set up a
multidisciplinary panel to diagnose children and make referrals. Seymour says
children who are observed and examined by the panel will make a referral for
treatment if the kids display five of the “red flags” often seen in children
with autism. These include a lack of eye contact, or too much; a lack of joyful
expressions; lack of interest in puzzles; failure to respond to their name;
repetitive movements; hand flapping; taking comments too literally; rigid
thinking; hypersensitivity to touch; and several others.

Speech and language therapist Faith
Gealey-Brown explained that audiologists, who treat hearing problems, are often
the first to see children who are later diagnosed with autism because parents
think their children are not answering to their names because they may be deaf.

Roz Griffiths, also a speech and
language therapist, advises that teachers and parents should be literal when
talking to children, for example, instead of saying “This is a dog” when
showing them a picture of a day, they should say “This is a picture of a dog.”
She also advises that classrooms should be clutter-free with designated areas
for playing, reading, or drawing and that equipment should be labelled.

She said using visual cues is
helpful for children with autism and that verbal information should be kept
“short and simple, literal and repetitive”.

As well as diagnoses from the panel
of professionals, the new funding will also go towards awareness training and
workshop sessions by a psychologist.

Autism is a relatively new
disorder, first identified in 1943 by Dr. Leo Kanner of Johns Hopkins
University, who based his discovery on 11 children he observed between 1938 and
1943. From the 1940s to the 1960s, the medical community felt children who had
autism were schizophrenic and it was really only since the 1970s that doctors have
began to recognise that there was an autism disorder spectrum.

Paediatrician Dr. James Robertson,
speaking at the May autism meeting, said most medical papers on autism were
written in the 1980s; “30 years ago – in medical terms, that means this condition
is very young,” he said, adding that the cause of autism is still unknown and
there is no cure for it. “We have therapies, but we have no cure,” he said.

In his presentation, he debunked
several myths surrounding autism, including that all people with autism are
savants, that there is a cure, that children with the disorder do not
communicate and like to be alone, or that they can never go to mainstream

Recognising the symptoms of autism
early is an important step in treating children with the disorder. “With early
intervention, we can increase the number of children who will go to mainstream
schools,” Dr. Robertson said.

He said it was
necessary for parents, health professionals and teachers to work together to
ensure all the services these children need are made available to them. “Our
goal is to make services available on Cayman that are available everywhere else
in the world. We believe children on this island should have as good
educational and developmental opportunities as they have anywhere else,” he