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Northern Ireland autism services at 'breaking point' as lack of support leaves parents feeling isolated and depressed

Samantha Porciello (35) from Whitehead with her son, Sonny (6) who has Asperger's Syndrome
Samantha Porciello (35) from Whitehead with her son, Sonny (6) who has Asperger's Syndrome
Autism NI CEO Kerry Boyd
Allan Preston

By Allan Preston

An autism charity has warned that services are at "breaking point" in Northern Ireland with one in 30 school children now identified as being autistic.

New figures from the Department of Health show a significant rise over the last decade in school-aged children identified with autism.

One local mother who has a son with Asperger's Syndrome also told the Belfast Telegraph a lack of support left many parents feeling depressed and isolated.

The statistics were compiled from the Northern Ireland School Census and show 9,768 school-aged children have autism - out of a total of 30,000 individuals living with autism here.

At 3.3% of all pupils in 2018/19, this is a 2.1% increase since 2008/09.

Other figures show that those in urban areas are 1.5 times more likely to be affected compared to rural areas.

Boys are also four times more likely to be diagnosed than girls, which is in line with international findings.

Belfast has the highest rate overall, and the most deprived areas in the country have a 58% higher rate than the Northern Ireland average.

Autism is a developmental disability which affects how a person communicates and relates to other people.

As a spectrum condition, some people can live independent lives, while others need a lifetime of specialist support.

Asperger's Syndrome is a similar condition to autism, it is less associated with learning disabilities but causes difficulties in social interaction.

Autism NI CEO Kerry Boyd said the figures were "alarming", but not unexpected.

"A report was commissioned by the NI Department of Education which warned of this 'autism wave' of diagnosis back in 2002 and this was the motivation for Autism NI's autism awareness lobby at Stormont which led to the establishment of the Autism Act (NI) in 2011," she said.

"Therefore, it is extremely frustrating that because the NI Assembly is not functioning, autism is not getting the right level of attention that is so badly needed."

The charity has now called for an urgent review as pressure on autism services was now at breaking point, with parents in some trust areas still waiting up to 18 months on an assessment with support services "few and far between".

Autism NI say they are now stretched to full capacity as their family support service has seen a 40% increase in demand for advice and post-diagnosis support.

The charity say all diagnosis should be made as early as possible, with a tailored intervention package for each child.

They also demand mandatory autism training for all teachers and classroom assistants.

Samantha Porciello (35) from Whitehead says she often felt overwhelmed in caring for her son, Sonny (6), who has Asperger's Syndrome.

"Sonny's cognitive abilities are very high, but he struggles with his motor skills and regulating his emotions," she said.

"That stops him having a good relationship with other children and he has panic attacks."

She recalls one particularly difficult time when Sonny was in nursery school.

"He had a sensory overload and would lash out," she said.

"I remember crying that day and being told 'he's really naughty,' but he's not, he's just wired in a different way to typical kids.

"I felt like a really bad mother and really alone, I didn't socialise with other parents.

"I was really depressed and isolated, you get a diagnosis eventually but then nothing happens."

She believes the government are far too resistant to invest in resources for autistic children in their healthcare and education.

"It took me about four years to get a diagnosis from the health trust for Sonny, and I very much felt the attitude was 'that's that then'.

"We got some information about courses, but autism isn't a one size fits all. Everyone is different.

"The information on the courses was so generic and didn't apply to my life at all, so you would come home with a real sense of shame at being the parent of a child with autism."

Ms Porciello said Autism NI had thrown her a lifeline with a home visit which helped her tailor care for Sonny.

"They offered me emotional support and let me know I wasn't alone and helped me to stop beating myself up.

"They really helped me to see the world through his eyes. All over my home now we have visuals that help him to do things like brush his teeth and get his energy out with exercises in the evening."

She said life is now much easier and it makes financial sense for the government to offer more support.

"The needs of a child with autism are so intense that parents get so depleted and depressed. Many are having to go to their doctors with depression or attend therapy.

"So governments need to support parents before it becomes a crisis, otherwise it will end up costing even more money."

Further information is available at www.autismni.org or by calling 028 9040 1729, option 3.

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