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 Stewart, 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 Michael 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 Stewart and her son Calum, who was diagnosed with autism in JuneSHIRELLE Stewart 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 Matthew (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 Paul 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 Paul 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 Sarah (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.”