‘Had I followed the teachers, he would not be correctly diagnosed and he would suffer for it’

Danielle Berselli remembers the teachers and principal at her son’s state primary school encouraging her to look into an autism diagnosis for her son Luca.

Luca, now 15, was diagnosed with autism spectrum hyperactivity disorder (ADHD) in year 3, and also identified as gifted. But while he was not fulfilling his potential, nor was he failing, so the school was unable to provide additional support.

“They would say to me, ‘you know, if you looked into getting an autistic diagnosis, then we could apply for funding’,” said Ms Berselli, who lives near the Royal National Park south of Sydney.

Danielle Berselli is pleased she did not let the school push an autism diagnosis for her son Luca, as it might have prevented him getting the treatment he needs for his ADHD.Credit:Ben Rushton

The conversation about autism diagnosis and funding came up at least twice, once before his ADHD diagnosis and once after.

Ms Berselli said she would be open to an autism diagnosis if it were correct. However, in Luca’s case, she was fairly certain the label didn’t fit, and his doctors agreed.

Luca was diagnosed and put on medication for his ADHD soon after the year 3 NAPLAN test. When his year 5 NAPLAN results came out, the same principal who had urged her to get an autism diagnosis called her in to talk about how much work the school had done to help him achieve such a “massive improvement”.

“I'm sorry, but the difference in that is that we had the correct diagnosis, and we had the correct treatment for him,” Ms Berselli said. “If I’d had him diagnosed as autistic, instead of ADHD, then he would not have made that improvement. Had I followed the teachers and in their knowledge and their experience of being educators, had I allowed them to push me in that direction, he would not be correctly diagnosed, and he would suffer for it.”

Luca, now 15, was identified as gifted as well as having ADHD.Credit:Ben Rushton

One in five parents of children with ADHD has had the school push them to get the diagnosis changed so they can access funding to support the child at school. Children with ADHD are not eligible for targeted funding in the NSW system. A number of parents of children with ADHD have told The Sun-Herald about even more extreme experiences with schools refusing to accept a medically validated diagnosis, though few were willing to share their stories publicly.

One woman, Emily Kingston* whose children attend a public primary school in Sydney’s inner west said the school had suggested her son should see a paediatrician for an assessment after the orientation program before kindergarten. Ms Kingston said that when the paediatrician said the child had markers for ADHD but she was not yet willing to diagnose, the assistant principal asked for permission to talk to the doctor. Ms Kingston agreed.

Two days before her son was due to start school the paediatrician rang to say she was “willing to diagnose oppositional defiance disorder” on the basis of her conversation with the school. Ms Kingston said she was told she could accept the ODD diagnosis, or refuse it and receive “no extra support” from the school, or keep her son in preschool for another year.

She felt forced to accept the ODD diagnosis. Despite this, she said the school took a hard line with its behaviour policy and the suspensions started from term one of kindergarten.

“There were incidents in the playground where he didn't start something, another kid hit him, he hit back and he was suspended,” she said. “The other kid wasn't because the other kid was going through some personal issues … so they were given leniency but our son wasn't.”

The Kingstons felt the school exaggerated incidents in an attempt to support an application for funding, or for placement at the special needs school a few suburbs away. Ms Kingston said she would be called to come and collect her son because “he’s trashed the room again” and this would be written on the official report but when she got there, the teacher’s aide would say he’d merely knocked over his pencils.

Her son is now at a different school and getting the support he needs. He has a diagnosis of ADHD and anxiety and the ODD diagnosis has been formally removed.

* Name has been changed.

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