Q&A: New autism protocol aims to tackle delays in assessment of need
Many questions are being asked in disability communities about the new autism protocol and approach to assessment being rolled out this spring.
Many questions are being asked in disability communities about the new autism protocol and approach to assessment being rolled out this spring.
As numbers of children overdue for an assessment of need (AoN) spiral past 20,000, we put people’s questions to the HSE.
The Government said in December it wants to tackle AoN delays. Children also wait months, if not years, for many therapies recommended.
The AoN is a statutory right under the Disability Act 2005. It should be complete within six months of referral. One in three children going through an AoN are identified as autistic.
However, the number of people waiting longer than six months for an assessment has risen to 20,209 — a 42% increase from 14,221 a year earlier. At the same time, 45% more AoNs were completed last year compared with 2024.
One change promised by disability minister Norma Foley is a new autism assessment and intervention protocol.
The rollout is set for “early 2026”, according to a HSE spokeswoman. The first step will involve recruiting 11 autism in-reach teams. All HSE regions will also work with the service improvement programme for the autistic community to prepare for the changes — although this programme is not new.
People want clarity on how the protocol will interact with the AoN process. Parents worry a child could receive a more basic assessment under the new tiered approach before waiting again for a more detailed one.
There is also uncertainty about whether the protocol will reduce long waits for an AoN.
Families ask why should they believe a non-statutory process will deliver therapies when the AoN process often does not.
Questions have also been raised about the role of new in-reach teams and where staff will be recruited from.
It is being presented as a new way of working and a more effective way to manage access to specialist staff.
The HSE has already piloted a tiered approach to assessment. It found about 40% of autism assessments were completed at Tier 1 — the least intensive level, linked to what it described as “relatively clear presentations of autism”.
A spokeswoman said Tier 1 assessments take less time than routine assessments but are “not necessarily aligned to the complexity of presentation”. She said the nature of the assessment a child receives would be determined by the assessing clinician or clinicians, who will scale the assessment to match "the complexity of the presentation". This means assessments may vary in length and in the number of professionals involved.
The HSE intends assessments will “explain and help people to understand the causes of their difficulties”, as well as giving a diagnosis and identifying supports needed.
Assessors will also be expected to provide an alternative diagnosis where difficulties cannot be attributed to autism, which could include referrals to other services.
The 11 new teams will include a psychologist, an occupational therapist, a speech and language therapist, and an administrator. It is not clear yet if they will be ‘new’ staff or seconded from other existing teams.
They will work across the country offering expert back-up to community teams. HSE regions will work with the service improvement programme to make sure these teams connect with all services.
It should mean children do not end up on multiple waiting lists, as is currently the case.
This is also coming in across disability, mental health, and primary care services. It will mean if a child is under a disability service but also needs mental health therapy, they can be referred without joining a new waiting list.
It should streamline the referral process for children and youth services. Self-referrals will still be accepted.
The HSE spokeswoman said the application for AoN would remain unchanged.
The HSE spokeswoman said: “An AoN is not required to access any health services.” She said “a person or parent doesn't need to apply for an AoN to access an autism assessment, nor any health services for their child/themselves".
She added: “Clinical assessment through this specific pathway for autism does not affect a person’s entitlement to apply for an AoN under the Disability Act 2005 and such an application is a different process as required by statute.
“However, assessment under the protocol may be used to inform an AoN if appropriate.”
The HSE does not currently offer adult assessment for autism. The spokeswoman clarified that under the new protocol, adults can self-refer or parents/guardians may refer children if they believe they have autism-related difficulties.
The HSE said waiting times for assessment should reduce “over time”. It also said the changes were expected to lead to faster provision of services and supports following assessment.
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