Every Child Counts Report shows two-thirds of respondents are dissatisfied with HSE services and 40% said that their autistic children lost key skills during the pandemic
There is widespread fatigue felt by huge swathes of parents and guardians of autistic children in attempting to secure adequate care for their children, according to a new report published today by Ireland’s national autism charity AsIAm.
The report is a quantitative analysis capturing the experiences and opinions of the many families in Ireland who have an autistic child and seeks to capture the voices of the autism community in accessing support and services from the Health Service Executive (HSE). While AsIAm received considerable engagement with this study – with 454 responses to an online questionnaire – we would qualify, from the outset, that these findings are only a snapshot of a problem on a much larger scale.
Every Child Counts exclusively focuses on experiences with public healthcare access, support, and services and is the first such survey for AsIAm’s Community Support Team. Key findings include:
- Two-thirds of parents and guardians surveyed have had to wait two years or more to receive an autism diagnosis for their child.
- Over half felt very dissatisfied with the HSE support services for their autistic children.
- Almost four in five said that 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 lost key skills during the COVID-19 pandemic, whether that be in their educational or interpersonal skills.
Commenting on the campaign, CEO of AsIAm Adam Harris said, “Our report is comprehensive in its remit, with several underlying issues and themes captured ranging from the perennial struggles in accessing an autism diagnosis, to the lack of assistance provided in the days after receiving a diagnosis for a child. It is evinced throughout our study the struggles families must endure to access basic yet essential services for their autistic child – or indeed, their autistic children.
“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.
“We welcome the commitment of Minister Anne Rabbitte, the
Minister of State for Disability, to create an Autism Innovation Strategy to comprehensively address the issues autistic people face across Irish society. We believe this report highlights the urgent need for this Strategy to be put in place, in consultation with the autism community, and appropriately resourced.”
AsIAm structured the survey in a way that could gauge the experiences of autistic families throughout their engagement with the HSE, from applying for their first autism assessment to accessing follow-up services. Several areas of interest to members of the autism community were examined under key headings. These include Assessment and Diagnostics, Accessing Services, the Impact of COVID-19 on Supports and Services, Carers’ Allowance and Domiciliary Carers Allowance, and Case Studies.
You can view the full report here.
The Every Child Counts report made recommendations for several organisations in terms of dealing with the challenges raised by the survey respondents and those include:
The Department of Health should:
- Invest €5 million for HSE Autism Action Plan to accelerate its delivery, with particular focus on developing clear and accessible pathways for service delivery.
- Invest €2.8 million to hire 100 additional caseworkers to support Early Intervention Teams for autistic children’s referrals.
The HSE needs to:
- Accelerate the work of its Autism Action Plan to urgently identify and address accessibility barriers, both long-term and those arising from the COVID-19 pandemic.
- Commence a formal process of collection, analysis and regular publication of data relating to autism diagnoses, the demographics of those seeking an AON (Assessment of Need), waiting times, and follow-up engagement of families post-diagnosis.
The Department of Children, Equality, Disability, Integration and Youth should:
- Invest €100 million in Tusla’s services and programmes, joining in the Children’s Rights Alliance’s calls for similar levels of investment to safeguard against vulnerable children’s exploitation.
About the survey
The survey was disseminated to the autism community on 8th February 2021 for four weeks, ending on 7th March, with a total of 454 completed responses to an online questionnaire issued by AsIAm.
There were two types of respondents to this survey – families of diagnosed autistic children and families awaiting an autism assessment. 94% of respondents were from families of autistic children, whilst 6% were from families awaiting an autism diagnosis for their child.
A wide range of affected age groups was reported, with the majority of respondents’ autistic children aged 6-10 years (43%), followed jointly by those aged 0-5 years and children aged 11-14 years at 21% each, with young people aged 15-18 years featuring as the smallest group at 13%.
In terms of the geographical spread of respondents, 34% were based in Dublin, 10.5% in Cork, 25% from the rest of the Munster counties, 6% were living in Kildare, and 10% in the Connacht/Ulster area.