Representatives from charities supporting local autistic people say early diagnosis allows people to get an education and move more smoothly into adulthood.

Nicolette Powell, Praxis Care’s Isle of Man Branch Manager, said people on the Isle of Man were sometimes left undiagnosed due to limited coverage of services and pathways.

Autism, a developmental disorder, affects how people perceive the world and interact with others.

Nicolette said she learned how to “understand myself” after her son was diagnosed with autism at the age of 17 while living in the UK.

It is estimated that around 1,500 people living on the Isle of Man have some form of autism.

The Department of Health and Social Care (DHSC) has called on people to share their views on best practice for the autism community ahead of a month-long campaign focused on autism.

A series of public meetings will be held ahead of April’s Autism Inclusion Month in an effort to make the island “truly autism-friendly” and “reflect the lived experiences” of the local community.

10 years National Autism Spectrum Condition Strategywas approved by Tynwald in 2024 and set six goals, including increasing acceptance of people with disabilities and attempting to improve inequalities in care on the island.

So far, the plan has seen the creation of new social groups for autistic people aged 18 to 25, as well as further advice and support for schools.

But getting a diagnosis, the first major hurdle on the road to autism for many people, has historically been difficult, Nicolette said.

She said that, unlike in the UK, there was no NHS equivalent for autism diagnostic services in the Isle of Man, so many people had to pay privately or care for their children with limited access to services.

Currently, people aged between two and 17 on the island can self-refer to the Talk service or be referred by a parent, carer, GP or education staff, providing a single point of access for those in need of mental health support.

However, there are no autism assessment or diagnostic services available to people over the age of 18 on the island.

Plans to introduce an all-age diagnostic pathway for autism and attention-deficit/hyperactivity disorder (ADHD) are being discussed with Mr Tynwald due to submit them by February.

Nicolette said: ‘People often don’t even make it into adulthood if they can’t afford to pay for their personal lives.

“Even if you receive a civilian diagnosis, the statutory body may question the validity of the result because it does not know where it came from.

“People here are kind of stuck in a loop.”

Nicolette, who was a certified learning disability nurse in the UK before moving to the island, said early diagnosis was vital to directing the patient and their family to relevant services for the future.

However, the difficulty in early diagnosis is not unique to the island, as Nicolette’s own son was diagnosed late in life with autism and ADHD at the age of 17 in the UK.

“We struggled for a long time to get a diagnosis because he was so worried that he didn’t want to see a specialist,” she said.

She said the fraudster, now 18, had problems because mainstream schools “didn’t understand” him.

Without a diagnosis, people with suspected autism or ADHD are not supported by the education or criminal justice systems and may be susceptible to “manipulation” by peers trying to “fit in,” she said.

Nicolette admitted that before her son’s diagnosis, she wasn’t sure things would change that much, but she has since seen him take positive steps.

“He now has a way of understanding himself. He said he too has benefited from the diagnosis,” she said.

“He often had low self-esteem and felt he was responsible for some of his actions, but now he is able to remove that level of responsibility and strategize.

She said finally getting the diagnosis was a milestone, adding: “It was emotional for me too, I cried.”

A DHSC spokesperson said the department regularly meets with the autism community to hear their views, but acknowledged that “many members of the autism community” had not attended past meetings.

Through the February session and April campaign, the department was “looking at ways to reach people who might not normally join our teams, such as older adults within the autism community.”

The conference itself, which will take place at Nobles Hospital Keir Daly, aims to gather views on the important themes that awareness month should focus on.

The first one will be held on February 2nd from 13:30 to 14:30 (Greenwich Mean Time), and the second one will be held on February 10th from 19:30 to 20:30.

Those wishing to attend the conference are encouraged to pre-book online, and those unable to attend can share their views via an online survey.