Up to 100,000 neurodivergent children are being left behind by an education system that is not only “woefully lacking”, but in some cases doing long-term damage. Scathing testimonials from those in the sector are detailed in a new report, revealing shortfalls at every level. Senior writer Derek Cheng looks at the scale of the problem, what can be done, and what the Government plans to do.
Annabelle March credits her life to a teacher whose personal investment in her future led to her ADHD diagnosis.
“I don’t even know if I’d be here without her,” the 19-year-old Victoria University education and history student told the Herald.
“I had so many mental health issues as a result of having undiagnosed neurodivergence, so much anxiety. I went through periods of depression. I don’t know what would’ve happened.”
The teacher was mentoring her in her final year at St Margaret’s College and had brought up the possibility of ADHD, which eventually led to diagnosis and medication.
“I remember just bursting into tears because I’d never experienced such calm. I could think. It was like putting glasses on for the first time. I found this insatiable thirst for learning that I’d had throughout primary and middle school starting to come back.”
Without it, school was an overwhelming sensory experience that left her brain “seriously hyperactive with a million thoughts going on at the same time, but I couldn’t pin down one thought”.
But it took the teacher and the “fantastic leadership at the school” to alter March’s life trajectory, rather than the system itself.
“Teachers do what they can but they don’t have the funding or the information or the resources to help in the way they want to. It’s not readily available. My teachers had to search for that in their own time,” she says.
“My teacher said: ‘You’re not supposed to be trying to navigate this on your own. You have a right to an inclusive education. That’s what we’re here for.’
“It’s been life-changing. I still have many thoughts in my brain, but I can pick them out and use them when I need to. They saved my life.”
‘The Illusion of Inclusion’
March’s experience is typical of a system that is failing neurodivergent students at every level, according to a new report from the Education Hub: The Illusion of Inclusion.
About 15 to 20 per cent of all students are estimated to be neurodivergent, which includes those with issues either innate (such as autism, ADHD, dyslexia, intellectual disability, or Down Syndrome) or acquired (such as from a health condition, injury, drug use, trauma, or stressful life event).
Report co-author and Education Hub founder Dr Nina Hood says an estimated two-thirds of neurodivergent students in early childhood education (ECE) or school are not getting state-funded support.
With potentially between 120,000 and 160,000 such students, that would mean up to 100,000 students falling through the cracks.
“This is a sizable proportion of students in our education system. We’re talking big numbers here. The scale of the problem is enormous,” Hood says.
And for those with support, the vast majority are “not getting nearly enough - so a double-edge problem”.
The potential for long-term damage for a significant cohort of the coming generation is equally enormous, says Hood, a former secondary school teacher turned university lecturer.
“If these children had been given the right support when they were young - and we know that early intervention is critical - the vast majority can succeed. Without that, the long-term impacts are huge in terms of mental health issues, in terms of the need for long-term disability support, in terms of being able to get into employment.”
Consider a child with dyslexia who’s never had an effective reading intervention, instead thinks they’re dumb and incapable of learning, and are severely bullied for that. Or the life trajectory March was on before her teacher’s advocacy.
Or those who can’t afford the private one-on-one speech language therapy that has helped Hood’s 5-year-old son William, who has multiple co-occurring conditions.
“It is life-changing for my son. He can talk to me,” Hood says.
“I just think of all the other children like him who don’t have that. And that’s just not okay on any level.”
‘Heading towards major crises’
The report draws on 2400 survey responses from those engaged in the sector, including teachers, parents, students and support services.
“Respondents from all backgrounds overwhelmingly described the current education system as outdated and heading towards major crises, with many seeing homeschooling as the only option,” the report says.
“There is overarching agreement that the current system is not only not fit for purpose but in many cases is doing active, long-term harm to neurodivergent young people.”
It includes dozens of testimonials to illustrate the system’s shortcomings, including:
- Those without support who should have access to it.
- Those with support but not nearly enough.
- Schools and teachers already so stretched that they can’t do more.
- Educators who could do more but don’t have the right resources, training or skills; special education needs co-ordinators (Sencos) and learning support co-ordinators aren’t required to have any particular qualifications.
- Resources aimed at the bottom of the cliff instead of at the top.
- Systemic issues leading to students being punished or excluded for not learning when they just haven’t been given the right learning conditions.
Even when the support works well - which Hood says is “few and far between” - it’s often due to a school fundraising so it can stretch even further or, as in March’s or Hood’s case, a teacher or parent going above and beyond “in a system that is not helping them”.
Student: “I can’t count how many times I’ve been told I was dumb or ignored because the teacher didn’t know, understand or want to know my disability. Sometimes teachers would rather flunk me out by denying me my exams support and blaming me for what had happened.”
Ideally, all neurodivergent students would have quick access to assessment and diagnosis, and those who needed one would have individual education plans with well-trained staff who understood the student’s particular needs.
But that is mostly a pipe dream in a system where funding and resources are “woefully lacking”, the report says, with classroom sizes too big and teachers too overloaded to provide such attention.
Entrenching inequity
An overwhelming majority - 67.7 per cent - of parents with neurodivergent children told the survey they had no access to state-funded support, many of them undiagnosed because only the wealthy can afford an assessment.
“We have a number of cases where children cannot get a diagnosis, and it might be because they’re on a two-year waiting list in the public system to get an ADHD or an autism diagnosis,” Hood says.
“For dyslexia at the moment, it is nigh on impossible to get a dyslexia diagnosis through the public system. You have to go privately to get that, and that’s out of reach for the vast majority of families.”
Teacher: “The system does not recognise signs of SLD [specific learning disability] early, assess needs or provide intervention. It is alarming to continue to have children with undiagnosed dyslexia/dyscalculia/other SLD entering secondary school several years behind their peers. As a maths teacher, I have tried to refer students for dyscalculia testing, only to be told there is no testing that can be done. I know that to be untrue.”
Schools can’t provide more help if they don’t have the resources or capability (42 per cent of primary school teachers say they don’t have enough for such learning support), and even when they do, the help is often inadequate.
Hood points to an example of a teacher aide (TA) only being funded for a few hours a day. “So the child can’t attend school for the hours they don’t have that TA support, and are effectively excluded from the education system."
Then there are the teachers who don’t believe dyslexia or ADHD are real.
Teacher: “We still have teachers who don’t believe in various ND [neurodivergence]. There are more of them than people can even begin to imagine! Or they try to temper it with, oh we are all a little bit autistic - taking the continuum thing too far. This is how they give themselves permission for doing nothing to support learners with ND, because if we are all a bit like that, then most of us are fine so they just need to try harder.”
No support if not ‘flipping tables’
There are several ways of accessing state-funded support, but the report says there’s been little change in the Ongoing Resourcing Scheme since a 2009 review that found the scheme was “deliberately limited, unfair and unclear... it is heart-breaking for all concerned and morally repugnant”.
Access to the scheme (which supports 1.3 per cent of students with TA funding for students with high or very high needs) requires a “history of failures” and is then withdrawn when the student stops displaying challenging behaviour.
This has been called a bottom-of-the-cliff approach because underlying issues are not being treated, while neurodivergent students who are not “flipping tables”, in the words of one ECE worker, fall through the cracks.
Parent: “My child is high-masking and internalises distress so can appear quiet and compliant when in reality he is disassociating, paralysed, and unable to speak. Because of this, his needs and distress are not recognised, and he does not qualify for the support that a child with the same level of distress displayed as explosive behaviour would. After he hit crisis point at 9 years old, I sat in a room with three mental health professionals who acknowledged that despite coming from a loving and supportive family with many protective factors, he is at high risk of self-harm and taking his own life because of his particular neurodivergent profile.”
Other funding streams aren’t nearly enough, so if ECEs and schools can’t fundraise, they dip into what the report describes as their “already insufficient operational funds”, or ask parents for money, which the Ministry of Education doesn’t technically allow.
Survey respondents noted particular shortages in speech language therapists and educational psychologists - some hadn’t had access to either for more than two years - as well as early intervention teachers, child psychologists, occupational therapists, physiotherapists, counsellors and RTLB (Resource Teachers: Learning and Behaviour) staff.
Shortages are especially acute in poor or rural areas, so even with funding for specialist support, nothing can happen if no such services are available.
In many cases, teachers are left on their own without additional support.
Support Service: “Accessing occupational therapy support and putting strategies in place is near to impossible. There is a distinct lack of resourcing from a therapies point of view which leave the vast majority of adaptations to be left to the class teacher which is, quite frankly, an impossible task.”
Even when specialist staff are provided, they might not have the tools to help. “More than a third of Sencos were only ‘partially confident or not confident to carry out their role’, which is not surprising given there is no requirement for Sencos to have specific qualifications or to undertake training,” the report says.
Inadequate resources or training leads to a higher likelihood of generic advice rather than tailored, individualised support.
Teacher: “Bless the RTLB people, but in all honesty, every time I had one visit to support a diagnosed learner, I could practically mouth along with them the strategies they would suggest, it was always the same, it was never related to the learner... Now I have seen great work from RTLBs around other types of behaviour, but honestly the ND support seems pretty cookie cutter.”
Hood notes other barriers, including a school’s “immovable” rules, leaving neurodivergent students having to endure something “overwhelming”.
“Sometimes it’s really small things that, to someone who’s neurotypical, it doesn’t even register as being an issue, like children who have sensitivities to sound not being able to wear noise-cancelling headphones in class or assembly,” she says.
“I have a son who has to wear them in certain circumstances. If he doesn’t, it’s horrendous and he just becomes completely deregulated.”
None of these are new problems, and successive governments have tried to fix them. The report said the last raft of changes to learning support, in 2019/20, had many of the right fixes on paper, but only 3 per cent of survey respondents said they’d noticed any difference.
Long and expensive wishlist
The report wants a huge boost in funding and recourses - ideally with at least one TA in every classroom and a Senco in every school - and major upskilling of education staff. Eligibility should be based on need and “uncoupled from diagnostic status and externalising behaviours”, while support is best provided by properly trained staff in classes of smaller sizes.
The funding model shouldn’t be based on the overall school roll but on the number of neurodivergent students, and the funding should follow the student so the same paperwork doesn’t need to be filled in with every school transition.
Teacher: “If every school had reasonable access to an OT, SLT, RTLB - learning, RTLB - behaviour, educational psychologist, RTLit, RTD (for schools that needed it), counsellor and possibly some other specialists I’ve forgotten about, then our neurodivergent students and their teachers would have a vastly different experience of the school and education system.”
The report recommends turning ECEs or groups of schools into co-ordinating hubs so intersecting issues - education, health, mental health, social services - can be addressed and families have a one-stop shop where they can navigate them.
But Hood realises the chances of this are “sadly unlikely”, given the Government has shown no appetite for such hubs, nor does it have the fiscal room to make it happen.
Education Minister Erica Stanford recently announced her priorities, including targeting learning support for students with additional needs.
The ministry will be developing a work programme for this, which will “include a focus on optimising the learning support workforce and building teacher capability to meet diverse learning needs, including those of neurodivergent learners”, a spokeswoman for Stanford says.
“The Government recognises that too many neurodivergent learners are not having their needs adequately met in local schools and early learning services,” she adds.
“Strengthening our curriculum and increasing the use of evidence-based teaching practice should also reduce the number of students who need additional support. Strengthened assessment of progress and achievement will enable us to identify those who need support sooner.”
Hood says it’s “still early days” when asked if she’s seen anything from the Government that might shift the dial.
“Depending on what happens with the support through structured literacy, that could support dyslexic students.”
She notes Stanford prioritising boosting learning support for neurodivergent students, but “we’ve had no further details about what that’s actually going to entail”.
“You get the sense that they understand there’s a problem, but we are yet to hear exactly how they’re planning to address that. So it’s impossible to say whether it will make a difference.”
Derek Cheng is a senior journalist who started at the Herald in 2004. He has worked several stints in the press gallery team and is a former deputy political editor.