Families of children with autism face 'unprecedented barriers' in securing assessments and diagnosis

Families of children with autism face 'unprecedented barriers' in securing assessments and diagnosis

Private practices are now overwhelmed as parents seek autism assessments and diagnoses privately due to long wait times in the HSE.

A clinical psychologist who has had to close off her waiting lists for autism assessments has said the HSE's procedure for dealing with autism cases led to a surge toward private practices, which are now overwhelmed.

It came as Adam Harris, CEO of Ireland's national autism charity AsIAm, said families are facing "unprecedented barriers" in securing a timely assessment and autism diagnosis, which he said was critical for them to vindicate their rights, including in the education system.

Dr Sara O'Byrne runs the Treehouse Practice in Sandyford in Dublin and last week addressed an Oireachtas Committee on the Mother and Baby Home Institutions Payment Scheme Bill, based on her experience as a clinical psychologist working with young people who have experienced trauma and adversity.

Adam Harris, founder of AsIAm, said a timely assessment and diagnosis is 'crucial' for families.
Adam Harris, founder of AsIAm, said a timely assessment and diagnosis is 'crucial' for families.

However, she recently had to close off the waiting list for autism assessments in her own practice due to the sheer number of people applying.

"I opened back up for assessments at the end of April and within a matter of days all the available slots for the summer were taken," she said. 

"Our secretary would often have up to 10 calls per day from parents for these assessments and it is increasingly hard to know where to refer them on to.

"The other services we have confidence in have waiting lists of six-to-nine months, this is also privately."

Earlier this year, two families succeeded in a High Court action regarding the HSE's Assessment of Need process, specifically the Standard Operating Procedure (SOP) the HSE had implemented over two years ago. 

It had been heavily criticised as not providing an early diagnosis and has now been found to be unlawful.

Private sector heavily oversubscribed

Dr O'Byrne said: "Having not completed these assessments for a couple of years I was shocked with how much worse things seem to be — the standard operating procedure under Assessment of Need has not helped as this has not led to diagnosis and has driven people into the private sector, which is also heavily oversubscribed.

"I hope we can open back up [the assessment list] again towards the end of the year but we will never be able to meet the demand and there will be lots of children waiting far longer than they should."

She added: "In terms of solutions, the only one as I see it is investment in training places for psychologists in particular, where numbers are wholly inappropriate each year. We need to start at this point."

She also referred to vacant posts in HSE services and difficulties with recruitment and retention, with those waiting to access public services also facing huge waiting times.

Adam Harris said the situation was "hugely disruptive" for families, many of whom had sought private assessment due to delays in the public health system.

"The fact that many families have not been able to access the diagnosis that is vital to assessing their needs has created this backlog," he said.

Adam Harris said the situation was 'hugely disruptive' for families.
Adam Harris said the situation was 'hugely disruptive' for families.

The former president of the Psychological Society of Ireland (PSI), Mark Smyth, said: "Psychologists have the skills and expertise to complete quality evidence-based assessments and reduce unacceptably long waiting lists, they're just not training enough to meet the demand we all can see is out there.

"PSI are again calling for funding to be prioritised in this years budget to additional training places in all the professional psychology training programmes. 

"We know what the problems are and we know the solutions but need the political will and funding to implement the solutions."

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