Parents of autistic children tired of waiting for services, according to new report

Parents of autistic children tired of waiting for services, according to new report

Adam Harris chief executive of AsIAm, Ireland's autism charity. File picture: Leon Farrell/Photocall Ireland.

There is "widespread fatigue" among parents of autistic children, with a new report showing they do not feel they are getting adequate support, including from the HSE.

The report, published by autism charity AsIAm, is based on the responses of 454 parents to a questionnaire, reflecting disillusionment and despair at the often-lengthy wait faced by their children to get the supports they need.

According to the survey results:

  • Two-thirds of parents and guardians surveyed have had to wait two years or more to receive an autism diagnosis for their child;
  • More than half felt very dissatisfied with the HSE support services for their autistic children;
  • Almost four in five said they were not in receipt of any support from either the early intervention or school age-going teams;
  • Seven in 10 felt broadly dissatisfied with the HSE’s support in helping them better understand their child’s autism diagnosis;
  • Two-fifths of respondents’ autistic children have regressed during the Covid-19 pandemic, whether that be in their educational or interpersonal skills.

It is the first such survey for AsIAm’s community support team, with the majority of respondents the parents of younger children. Regarding those questioned, 94% of respondents were from families of autistic children and 6% were from families awaiting an autism diagnosis for their child.

Service provision has been in the spotlight in recent years, with efforts to cut a backlog in assessment of need (AON) cases, controversy over new approaches to fresh AON applications, and lengthy waiting lists for services such as occupational therapy and speech and language therapy.

Chief executive of of AsIAm Adam Harris said: “We hope that this report will shed light on the numerous obstacles that members of Ireland’s autistic community face whilst engaging with one of the most crucial public services. Many of these are systemic in nature, from lengthy waiting periods for assessments to navigating layers of red tape, and a fundamental lack of understanding about autism as a spectrum.

“It has been widely acknowledged that unique challenges faced by autistic children during the course of the Covid-19 pandemic, with the loss of structure and routine, coupled with the removal of vital therapeutic and educational supports. 

In many respects, the pandemic simply highlighted many years of under-investment and the longstanding failure to prioritise the needs of autistic young people in our health system.

“As we come out of the pandemic, it must be a political priority to not simply address backlogs caused by the Covid-19 pandemic, or recent cyberattack, but to comprehensively invest in and reform the supports available to autistic children to ensure every child receives the right support at the right time."

The report recommends actions across a number of State bodies, including a call on the Department of Health to invest €5m in the HSE Autism Action Plan to accelerate its delivery, and to provide another €2.8m to hire 100 additional caseworkers to support early intervention teams for autistic children’s referrals.

It also wants the HSE to commence a formal process of collection, analysis and regular publication of data relating to autism diagnoses, the demographics of those seeking an AON, waiting times, and follow-up engagement of families post-diagnosis.

The charity also wants a €100m investment in Tusla’s services and programmes.

Read the full report here

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