The Health Minister, Robin Swann, has revealed that more than 603 adults are waiting for over a year for autism diagnosis.
Mr Swann was answering an Assembly Written Question from South Down SDLP MLA, Colin McGrath, who also revealed that in total 1,101 were currently waiting for assessment.
The Minister also said that a planned review of adult autism services planned to begin in April of this year had been delayed as a result of the Covid-19 crisis but will be asking the Executive to bring forward an interim review early in 2021.
In terms of the current totals the Belfast Health and Social Care Trust alone has 346 people waiting in excess of 52 weeks for assessment, with only the Northern Trust not having anyone waiting beyond a year.
The written answer detailed how long were people waiting across four week intervals, as counted as of August 2020. Almost 200 have been waiting between 26-39 weeks.
Of the other trusts South Eastern Trust had 83 waiting for assessment more than a year, the Southern Trust 124 and the Western Trust 50.
Meta Auden, founder of Spectra Sensory Clothing reacted to the statistics: “The waiting times for an autism diagnosis are totally unacceptable and cause great distress for many.
“In the case of adults, they seem to be forgotten, and it has to be remembered that children with autism grow up to become adults with autism.”
Mr Swann was also asked for his plans to reduce the waiting times.
“People with Autistic Spectrum Disorder have access to a range of core HSC services,” he explained in his answer. “Support may be provided via GP and Primary Care in the first instance or referral onto services such as psychology or psychiatry, depending on assessed need.
“Access to other community services where relating to Mental Health or Learning Disability support are also available where appropriate, as are services provided through the community/voluntary sector.”
With regards to waiting times he said: “I am however fully aware of the rising demand for adult autism services within our health and social care sector and of the growing need for the standardisation of provision of services across the regional Trusts.
“This is why my Department has been liaising with the Health and Social Care Board and with the Public Health Agency to commence a review of adult autism services.
“Work on this review was due to commence in April of this year, but due to pressures on the system as a result of COVID-19, plans to commence this work had to be paused.”
He went on: “However, mindful of the challenges which COVID 19 has presented to families and people with autism, I have recently written to my Executive Colleagues to advise them of my intention to publish an interim autism strategy early in 2021 which will ultimately inform the development of a fully co-produced strategy later in 2021.
“It is intended that the work to review adult autism services will be undertaken as an action within this strategy. Like its predecessor, this interim strategy contains cross-departmental actions recognising that adults with autism require a wide range of support across for example health, education, housing, and employment.”
Meta Auden said that lengthy waiting times for diagnosis are across all ages:
“One of the frequently asked questions on the forums here is ‘is there anywhere else, where I can get my child diagnosed’?” she said. Until diagnosis they cannot access many HSC services.
“This means that the children are struggling at school, as no help without diagnosis.”
There has meant, according to the Spectra Sensory founder, many are having to pay.
“One customer has private health care but it does not cover the autism spectrum, so she is going for a diagnosis to a private clinic where the cost is nearly £400.00.
“There are not many who can afford this and considering that 85% of young adults with autism are unlikely to be in work compared to the rest of the young adult population the private route is not feasible.”
She added that, whilst her company caters for children, the range goes far beyond that.
“We cater for all ages, our largest size maybe a 17/18, but they are large enough for many adults and indeed many adults also wear our t-shirts and shirts.”