17,000 people with autism here ‘are getting raw deal’

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http://www.belfasttelegraph.co.uk/news/health/17000-people-with-

autism-here-lsquoare-getting-raw-dealrsquo-14046146.html

17,000 people with autism here `are getting raw deal'

By Victor Gordon

Saturday, 8 November 2008

Children and adults suffering from autism in Northern Ireland are

receiving a raw deal, it has been claimed.

The National Autistic Society Northern Ireland claims people with

autism, especially adults, are being ignored and that appropriate

services have not developed at a pace to meet their needs.

" Two-thirds of adults with autism have experienced severe mental

difficulties due to lack of support, " the society adds.

In two case studies of children, it has been revealed that one had to

wait five years for a diagnosis.

Another family was told their son would have to wait for a year for

an appointment for a diagnosis.

But they went private and had the appointment within five days.

It is estimated there are 17,000 people with autism in the province

and the society yesterday described the care as " something of a

postcode lottery, without a structured, overall strategy " .

But the society is hopeful for an Independent Review of Autism

Services, chaired by Lord Maginnis of Drumglass which was presented

to the Department of Health. It is currently out to public

consultation.

" There are many pluses in the report, " said Shirelle , the

society's communications officer.

" These include early diagnosis and intervention, a pathway for

parents, support for children and adults, appropriate education and

improved adult services — so far so good.

" But the society believes it doesn't go far enough, although we are

playing our cards close to our chest with the consultation period

still alive — the deadline is December 12. After that we will be

making our findings public. "

In the meantime, the society is calling on families affected by

autism to log onto http://www.

dhsspsni.gov.uk_review_of_autism_services_final_report.pdf and make

their feelings known.

The call follows a recent campaign by the society — called I Exist —

aimed at forging a better life for adults with autism.

A Department of Health spokesperson said: " Health Minister

McGimpsey is determined to see action on the ground to improve autism

services as a matter of urgency.

" Building on this review, the department urgently developed an ASD

Strategic Action Plan which was published for public consultation on

17 September 2008.

" Responses to the consultation are being accepted until the 12th

December 2008.

" The minister has secured investment of £2.02m over the next three

years to support the implementation of this action plan.

" It will set out the direction for service development and

improvement in health and social care services over the next three

years.

" It will focus on `person-centred' treatment and care, and will

include specific actions to raise awareness, and improve early

assessment, diagnosis and treatment, and provide better information,

advice and support for people affected by autism. "

Inspired by her son, mum campaigns for sufferers

Shirelle and her son Calum, who was diagnosed with autism in

JuneSHIRELLE has an |innate campaigning zeal. Until recently

her talents were concentrated on conservation with the RSPB (Royal

Society for the Protection of Birds). Now, every ounce is focused on

a better deal for children and adults with autism.

The reason for this switch to communications officer for the National

Autistic Society is deeply personal — in the form of her five-year-

old son Calum.

He was diagnosed with autism in June 2008 when he was two and a half

years old, a date ingrained forever in Shirelle's mind and on that of

her husband Robin.

But it confirmed what they already knew in their hearts.

Shirelle said: " Calum was a beautiful, healthy 7lbs 11oz baby.

" In the first 15 months or so he hit normal development milestones,

sitting up, walking, babbling just like his brother (7). But

there where just a couple of small differences.

He just stopped babbling and became very quiet and withdrawn

" He walked on his toes, he wasn't very interested in his toys and was

constantly jumping up and down on the spot when he became excited.

Then he just stopped babbling and became very quiet and withdrawn.

" This lack of babbling and development of speech was initially put

down to constant ear infections, but by the time he was nearly two

and still had no speech, we were referred to a speech |therapist who

suggested we be referred to a paediatrician specialising in child

development, but we might have to wait for a year for an appointment.

In hindsight, Calum was starting to display some classic signs of

autism. "

They couldn't wait a year and decided to pay a private paediatrician —

it took five days to get a private appointment!

Shirelle said: " We met a wonderful, kind doctor who, although he

could not make a complete diagnosis of autism, pointed us in the

right direction. We expressed our fears about autism and he very

gently said that he would also have these concerns.

" I was devastated, I felt alone and frightened for my son's future. I

spent the next few days unable to mention the word autism as if by

saying the word it became a reality.

" Then the practical side of my personality kicked in and I went into

overdrive to get an official diagnosis and help for Calum.

" In this time I learnt about how to develop play skills in children

with autism, how to teach communication, and in the period since he

was diagnosed Calum has been taught to play, imitate, develop social

skills and communicate.

" We have learned to accept and enjoy the difference Calum has brought

to our lives and are constantly thrilled when he learns something

new. "

Five-year wait for diagnosis

Cameron Gordon is a shining example and encouragement to all families

dealing with autism — he gained an A grade in the 11-plus last summer

and started grammar school in September.

His mother Audrey said: " Psychologists and educationalists were

surprised that he made it. But I knew he had it in him and if he hit

a good day, he would make the grade. Obviously he did have a good

day, and my husband and I simply told him to do his best and not

be pressurised.

" But children with autism do feel the pressure, and there was

pressure on the staff at his school — Holywood Primary — and on us

all. He likes his new school, Sullivan Upper, and they are geared to

cater for him. He has access to a classroom assistant and he is

getting help is making the transition from primary to grammar school.

He loves computers and science and the school is guiding him in that

direction. "

Cameron (11) couldn't have better parents to deal with his situation.

Audrey is a psychology graduate of Queen's University in Belfast and

is eminently suited to deal with all the traits of autism. And

is a graduate from the same university in ICT and has a real bond

with his son in that direction. They also have a daughter (9).

It took an astonishing five years for Cameron to be diagnosed. At the

Primary Two stage (aged 5) behavioural problems manifested themselves

and he was placed on the behaviour register and a careful eye was

kept on him. ADHD (Attention Deficit Hyperactive Disorder) was

suspected with his short concentration span.

He wasn't finally assessed until P7 when a psychologist spent a day

observing him and autism was diagnosed. In fact, even yet his exact

place in the overall spectrum has still not been determined.

Said Audrey: " Five years was an inordinately long time and it is

essential that this aspect of things is tightened up and that proper

procedures are put in place and the education of autistic people is

properly funded. "