‘She is losing precious time’

Prudence Williams says she is losing precious time waiting for her young daughter to be assessed for suspected autism spectrum disorder (ASD).

And while she waits for 2-yearold Matilda to be assessed in the public system, Williams reads and worries. ‘‘I want to help her as best as I can,’’ the Wellington woman said. ‘‘I have so many questions and I have no answers right now, other than me reading books and having a feel for her.’’

The Press revealed this month young children with suspected ASD were waiting up to 18 months for an assessment in Canterbury.

Wait times vary around the country, but Autism NZ chief executive Dane Dougan said they typically ranged between nine and 18 months. Anecdotally, the organisation had heard of threeyear waits for an assessment.

ASD describes a range of conditions including autism and Asperger syndrome. According to the Ministry of Health, people with ASD experience a delay or difficulty with language, social behaviour, and thinking skills.

For Williams, it took a while to suspect her firstborn might have ASD. She and husband Gareth became increasingly concerned when Matilda was not speaking at 15 months. The couple tried everything to encourage her to talk, including seeking help from speech therapists.

At 20 months, when she still was not talking, they went to a GP, whose referrals meant the family started getting help from a Capital & Coast District Health Board (CCDHB) therapist.

The family started suspecting ASD could be a factor when a neurodevelopmental therapist first visited in April.

‘‘There were too many

red flags. If it was just speech, OK, sure, but it is the sum of a whole lot of parts. I was seeing a whole lot of behaviours manifesting in her probably when she turned 2,’’ Williams said.

Matilda would not wave or point. She would become anxious when her father left for work, and distraught if she was told ‘no’, including banging her head on the ground. The neurodevelopmental therapist asked if the family wanted Matilda to be assessed by the DHB’s child development service. They said yes. Seven months on, they had yet to hear anything

Prudence Williams is concerned her 2-year-old daughter, Matilda, has autism and faces a long wait time for an assessment. about an assessment date.

‘‘For me, it has been a long time to wait and to worry about what you are dealing with but also a long time to understand how to help her, because they say intervening early is so critical,’’ Williams said.

While the wait was difficult, Williams understood it was to do with resources, not a lack of care.

In the interim, the family paid about $300 for a private paediatrician to assess Matilda. The specialist said her lack of speech was almost certainly a marker for ASD but characterised it as mild.

Matilda can now say words: dad, mum and cat.

Williams said there would be many other families waiting for an assessment and diagnosis for their children. It was a vulnerable position to be in, she said.

‘‘I feel like I am losing precious time to help her with things that maybe I am not picking up on other than speech.’’

The New Zealand Autism Spectrum Disorder Guideline, published by the Ministry of Health in 2016, said there was inconsistent and inequitable access to ASD assessment and diagnosis. According to Autism NZ, autism affects about 80,000 New Zealanders.

Last year, 238 children were referred to the CCDHB child development service for assessment. So far this year, 186 have been referred. The average wait time from referral to a specialist appointment was eight months.

Dougan said the wait times were unacceptable, as families needed an assessment and diagnosis to get support.

‘‘We are missing some critical time in a child’s life to help support them and allow them to live to their full potential.’’

CCDHB provider services interim director Joy Farley said increasing demand and the ‘‘growing complexity of referrals’’ affected wait times for all DHBs.

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