When Zarisha Ghayur started school at age five, an assessment of her intellectual disability found that her IQ was so low that it could not be scored. Her language skills were ranked in the bottom 0.1 per cent among Australian children her age.
“Unable to complete any verbal task, even when pictures were involved,” the psychologist wrote in her report. “Did not interact on a personal level with the examiner, did not appear to respond to conversation directed at her.”
The following year, in 2017, her older brother Zeerus was also assessed at age eight.
His IQ was also too low to be scored, his verbalisations “limited to one or two word utterances and frequent echolalia”.
Such assessments – which involve a series of tests of children’s speech, verbal comprehension, working memory and so on – are standard when determining a child’s eligibility for funding under Victoria’s program for students with disabilities.
The Ghayur siblings both have level-three autism, the most severe form of autism on the spectrum. They attend a special developmental school in Traralgon that caters for children with severe intellectual disabilities.
Yet at the end of the 2020 school year, when they were both assessed again, something remarkable happened.
Zarisha scored 73 on the Wechsler Scale IQ test for children, a score that, while still “very low”, ranked her intelligence above the standard marker of 70 or below, which indicates intellectual disability.
Her brother Zeerus scored 66, indicating mild intellectual disability.
“It was a huge shock; we never expected them to score so high,” their father, Adeerus Ghayur said.
“The first thought was that maybe there is something wrong with the test. But then the second child went through the same thing with a different psychologist.”
The second shock followed soon afterwards, when the parents learned that their children’s unexpected improvement ruled them ineligible to stay at Latrobe Special Developmental School.
Efforts to enrol them both at Baringa Special School in Moe – which caters for children with milder intellectual disabilities – have also been rebuffed.
The school has said it cannot accept Zarisha. Her IQ is too high, and this will affect her funding under the program for disabilities.
There are no other dedicated special schools in the Latrobe Valley.
The Education Department has encouraged the family to enrol their daughter in a mainstream school.
The family has been told they should enrol their daughter Zarisha in a mainstream school next year.Credit:Eddie Jim
“Special education schools have set enrolment criteria,” a department representative said in an email on November 11. “Under Baringa School’s enrolment criteria, only students who are eligible for the Program for Students with Disabilities (PSD) and have been diagnosed as having a mild Intellectual Disability (IQ range between 50–70) are eligible to enrol ...
“As also discussed, students who are not eligible to attend special education schools are able to attend mainstream government schools, who are also committed to supporting students with additional learning needs.”
The children’s parents have put intense effort into improving their children’s cognitive ability.
They say they want them to attend mainstream schools, eventually, if they continue to improve, but fear that imposing a transition next year would be premature and potentially even unsafe.
“My wife sacrificed eight years of her education to take them to this level ... but we need a couple of years before it [a mainstream school] will be a safe environment for them to improve,” Mr Ghayur said.
Professor Andrew Whitehouse, the Bennett Chair of Autism at UWA’s Telethon Kids Institute, said IQ tests are “commonly used but almost universally understood to be a very flawed way of determining support access” for children with autism.
“What we can’t do is have families penalised due to therapeutic gains,” he said.
“Therapeutic gains do not mean they may be ready for a broader mainstream environment, which comes with great advantages but also huge challenges.”
Jim Mullan, the chief executive of autism support peak body Amaze, said there were some inspirational mainstream schools leading the way, with the right supports and enablers in place for autistic children to thrive.
“But there remains a significant gap between where the schooling system needs to be and where it currently is,” he said.
On Friday, the federal branch of the Australian Education Union released a survey in which 79 per cent of public school principals said they did not have sufficient resources to appropriately meet the needs of students with disability at their school.
A spokesman for the Department of Education and Training said specialist schools have individual enrolment criteria that align with the program for students with disabilities, and that these must be published on the school’s website.
“The Victorian government has launched Disability Inclusion, a landmark reform that will invest almost $1.6 billion to assist every government school to deliver the best possible experience for every student with disability and additional needs,” the spokesman said.
Professor Tony Attwood, a clinical psychologist and one of Australia’s leading experts on autism spectrum disorders, said mainstream schools have a policy of inclusion of autistic children, but that this is only in the child’s best interests when there is good teacher training and an autism-friendly school environment.
“So although you may have a philosophy of inclusion with typical kids, if you don’t provide the financial resources to do that, then it’s not always the best decision,” he said.
Professor Attwood said it was not unheard of for children with severe autism to become verbal between the ages of nine and 11.
“It seems to be something though that you’ve got to work on. It doesn’t necessarily automatically happen, but it can happen,” he said.
He said there was also a risk of regression when an autistic child shifts schools.
“If the person has had a positive reaction to a particular school, don’t rock the boat. Leave it be.”
from https://www.theage.com.au/national/victoria/parents-fight-for-autistic-…