Up until a few months ago, Auckland mum Elyse was receiving a call from her son's school nearly every single day to ask her to pick him up early.
Seven-year-old Oscar* was having what his mum calls 'meltdowns' - a state of overwhelm common in children with autism.
He'd be set off by something that'd seem trivial to someone not on the spectrum - a chair he normally sits in being used by another child, for instance - and would become uncooperative, disruptive and lash out.
"Rather than where another child might communicate what they feel and what's going wrong, Oscar can't communicate that," Elyse explained. "He can't label what he's feeling and when he's melting down, he's not verbal. So he just kind of shuts down."
That inability to regulate emotions is a hallmark of Autism Spectrum Disorder (ASD), and after multiple breakdowns Elyse took Oscar to a specialist, who confirmed what she'd suspected for some time.
"As his younger brother was growing up, I was noticing the differences and that's what highlighted it for me. So when we finally got it [the autism diagnosis] it was not a shock," she explained.
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"It was a relief knowing I didn't do anything. He just has autism now; I can understand him. And I thought when it got out to all the people, they'd understand too now and people would help him."
But that's not quite what happened. Instead, Oscar's north-west Auckland school "just made things worse and highlighted his differences," Elyse says.
When he started to have a meltdown or get a bit angsty, Elyse says staff would "put the whole class into lockdown" - either by removing Oscar from the room and locking the door, or taking his classmates out and locking him inside with teachers who would restrain him.
"We were just constantly told it was for his protection and for the other children's protection, so we kind of went along with it when they restrained him. The teacher certainly couldn't cope - she was not supported properly."
They also discouraged Oscar from bringing soft toys to school which would calm him, and got rid of a space in the classroom he used when he was feeling overwhelmed by sensory stimulation.
"One day it was just gone with no consultation, no preparation for him, that it wasn't going to be available to him anymore," Elyse said.
"With a child with autism, everything needs to be prepared well in advance. He may have been able to go without that space, but I would have needed to prepare him for that four weeks before it happened."
'Damage was done to him'
Under these conditions, Oscar was soon acting out frequently; he was stood down multiple times, and Elyse was called out to pick him up early almost every day.
She says the punishments handed out by Oscar's school destroyed his confidence.
"If you're telling him [not to misbehave], he can't stop his behaviour in that way - that just compounds it," Elyse said.
"He had this real fear and he felt awful. He would see me arriving at the school to pick him up... and he would panic because he thought, 'oh, my God, mum's here - that must mean I've done something wrong, that means they can stand me down'.
"It wasn't really until I took him out of school and really stepped back that I noticed the damage that was done to him - when I'd take him back to the school to pick up his little brother each day, his body would change as he walked into the school grounds, he was really anxious and upset."
Oscar has now moved to a different school, which Elyse says has been "amazing" for him. Already he's been completing full days, and his teachers are getting his meltdowns under control and letting him continue in the class once they're over.
They've also made efforts to make Oscar's learning environment more inclusive by introducing allocated seating, visual timetables and a 'calm down' space, and allowing him to bring in a sensory box, soft toys and other items that help soothe him.
"It's not perfect, but he's just treated differently," Elyse says. "When I arrive to pick him up, he tells me all these amazing things he's done during the day and he's glowing like 'I've achieved something'. Every day he's ecstatic that he's managed to stay stable, even if it's the only thing he's achieved.
"They just talk with the other children without singling him out, without making him feel different. They say 'Oscar's a bit upset at the moment so he's not remembering to use his words, so let's just give him some space' - they're really sensitive to his needs.
"It's really highlighted for me what inclusive education really is and that schools can achieve it, but they have to work towards it."
'Parents don't feel listened to'
Sam Hall is the CEO of SmileDial, a charity that advocates on behalf of children with special needs and provides support for their families. He's also the father of a child with autism and other neurological conditions.
Hall says it's common for the behaviour of autistic kids to be misunderstood as naughtiness in a school environment, rather than as a natural response to a sensory overload.
While he is complimentary of his own son's school, he believes there are widespread issues with treatment of autistic children in schools because their needs can vary widely.
"We've found with my son that having previous experience [with autism] is not an advantage to caring for him at school. He's just him - he's got his own spectrum, his own needs.
"[Schools are] actually better to come in with a clean slate and work with the parents who know him so well to come up with a plan. A lot of people think they know but actually, each child is so different - you can't just paint them all with the same brush.
"You need to figure out what sets them off, what calms them down, to have areas to calm them down."
Hall says ultimately, punishment doesn't work on any child - and especially not on autistic kids, who can feel out of control and often don't comprehend the link between their behaviour and discipline.
Though he understands teachers are busy and don't always have the time to stop and consider how best to respond to a child's needs, he believes schools can be more flexible and willing to implement changes that'd suit them better.
Elyse says schools poorly treating their autistic pupils is a big problem. She believes many see the behaviour in isolation rather than look to its cause, and need to get better at creating an inclusive environment for those on the spectrum.
"An inclusive environment doesn't mean you just let the child into the classroom, it means you put things in place to put them on the same level with their peers - and Oscar was never given that opportunity [at his first school].
"I want to think it's not intentional on the part of the schools, that they just don't understand - but a lot of the things that he needed to make him to be able to function in that space, they weren't big asks.
"I mean if he had a wheelchair, they would have given him a ramp. I'm not saying they're the same thing, but what I am saying is just because you can't understand [the behaviour], doesn't mean you shouldn't respond to it."
Hall agrees, and says teachers need to start heeding parents' advice about what their child needs.
"Often parents just don't feel listened to by the teachers, whereas the parents actually know best. That's a big issue."
Lack of flexibility to blame for breakdown
Elyse said rather than looking at what was triggering his meltdowns, staff at Oscar's first school focused on his 'naughty' behaviour and said they had to punish him.
"They put a lot of barriers to his learning and I certainly felt - and I've spoken to a lot of other parents in similar situations - you feel like you're being managed out [of the school]," she explained.
"I think one of the responses to me at one point was like, 'look at our policies, we're inclusive'. But you can say whatever you want about the policies - if you don't practise it, it's not actually inclusive."
In its 2019-2025 Learning Support Action Plan, the Ministry of Education vowed to prioritise flexible supports for neurodiverse children after a select committee inquiry identified a need for an improved range of services for these kids, their whānau and their teachers.
"We will work with a user group of educators and parents... to identify tools and resources for educators and parents to better meet the needs of neurodiverse children and young people," the report reads.
"We will also co-design a flexible range of specialist supports, building on existing supports and programmes."
That flexibility is a key area for improvement identified by Hall. He says many educators have been taught one way of dealing with neurodiverse kids, when they need to be open to figuring out just what makes that child tick.
"I think the Education Ministry is really lacking that broad knowledge of how best to help children with autism, because they've been taught one way, but they need to have flexibility and actually figure out how the child works," he says.
"That's where it often breaks down: with teachers not knowing what to do because they're doing something that might work for someone else."
Katrina Casey, the Ministry of Education's Deputy Secretary for Sector Enablement and Support, told Newshub it recognises an autism diagnosis doesn't necessarily pre-determine what young people need to thrive at school.
"One student with a diagnosis might need more or less support than another student with the same diagnosis," she said. "That's why access to learning support provision in education is based on understanding the strengths and needs of children within the context in which they learn."
The ministry offers a range of supports to schools with neurodiverse kids, including Learning Support Coordinators (LSCs); Resource Teachers Learning and Behaviour (RTLB) staff; and funding for learning support systems, which can be spent on resources, programmes, staff training or Special Education Needs Coordinators.
The Government has also invested $1.1 billion into learning support since 2017, which includes employing 180 more ministry specialists as well as around 1000 RTLB staff and more than 600 LSCs.
*Oscar is not his real name.
