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Joined: 25 Aug 2013
Age: 65
Gender: Male
Posts: 30,935
Location: Long Island, New York

06 Feb 2023, 12:32 pm

The University of Sydney

New research has revealed that children wait 3.5 years on average for neurodevelopment assessments.

The largest study of needs of families requesting neurodevelopment assessments found that the average time for families waiting on a completed assessment for their children was 3.5 years in public services. This wait time started from when parents first noticed a concern to when they received a comprehensive assessment.

A new paper led by Dr Kelsie Bolton, A/Prof Natalie Silove and Professor Adam Guastella from the Brain and Mind Centre looked at children enrolled from ages 6 months to 17 years with neurodevelopmental concerns, and their caregivers. A total of 916 participants took part in the study.

Lead author Dr Kelsie Boulton says, ‘Parents are noticing concerns by the age of 3 and they are not getting to the assessment service until the age of 6 and a half, so that’s already a missed opportunity.’

Other findings concluded that clinicians were more focused on autism diagnostic needs while caregivers were more focused on non-diagnostic needs.

Only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Of these reports, it was found that the language employed was often too complicated for caretakers to understand.

The study aimed to shed light on demographic factors associated with delays, such as parental separation and education status. It found that families with a low socioeconomic status and separated families experienced the longest delays.

Sydney Health Partners has funded a new project, that aims to shift the wait lists so that families can get assessments faster using innovation and technology. The team at the Brain and Mind Centre will be working collaboratively across multidisciplinary practices to come up with new innovative models to improve current wait time forecasts and assessment outcomes.

Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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Joined: 1 Nov 2017
Gender: Non-binary
Posts: 55,703
Location: Wales

06 Feb 2023, 12:38 pm

Wow that's awful.

I wonder why separated families had longer delays?
Does that mean the parents are separated and why would that matter? :scratch:

I hope all the families on the waiting lists are given some access to service or support products which would help the family / child based on the child's specific needs, whether a formal ID is later made or not.

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Joined: 23 Feb 2020
Gender: Female
Posts: 1,347
Location: Alpena MI

07 Feb 2023, 5:27 am

it doesn't seem to be getting better anywhere. People are continually misdiagnosed after the agony of waiting for so long, professionals are not keeping up with science's current understanding of autism and are relying on outdated diagnostic criteria and concepts such as "eye contact" and "social struggles" in rigid ways and using ideas from 20 years or more ago and no longer validated by science. I do see more information available to the general public, largely due to the internet. More adult autism books are being published, more forums, more information videos, more blogs, all good. Not a moment too soon as all undiagnosed baby boomers will turn age 65 by 2030. Now if more diagnosing professionals educated in today's understanding of autism were available......... If you know anybody who is seeking a medical degree, please ask them to specialize in adult autism, point out that there are millions of undiagnosed adults waiting for help.... instant job security!


"Curiosity is one of the permanent and certain characteristics of a vigorous intellect.” Samuel Johnson