The difficulty in finding help for neurodiverse children - and the Kiwis trying to change that

Early on, Samantha knew there was something a little "quirky" about her son Brody.

His reaction to seemingly ordinary everyday events is larger and more intense than others his age, often becoming overwhelmed by sudden loud sounds, the heat, and movement. 

"He is just constantly worried about too much noise. The lawnmower man turns up and he's got his leaf blower, he can't cope with that," Sam says. "If we go to the bathroom - because I have to still take him to the bathroom most places we go - we can't use the hand dryer."

It makes family time difficult. 

"We went to the park and he was wearing short pants and so the leaves were scratching his leg, which he just couldn't deal with. He was just screaming and crying."

Reassured by paediatricians her son "was normal", Sam began to refer to these moments simply as "Brody-isms". 

But as his behaviour became increasingly violent and Sam became more and more concerned, the mother says she pleaded with experts for help. 

Finally, last year, after countless visits to GPs and other experts, Sam was told Brody was likely living with Sensory Processing Disorder, a condition which affects the way the brain responds to information. Months later, the seven-year-old was diagnosed with attention deficit hyperactivity disorder (ADHD). 

Having SPD means Brody's senses, like touch or hearing, are amplified to a level that can often be unbearable. His mother says Brody requires more attention than most two-year-olds and while she loves him immensely and has made significant sacrifices to care for him, she describes getting help as a huge struggle that has left her mentally and emotionally fatigued. 

Finding help

One of the difficulties of caring for a child with a neurodiversity - before concerns like costs and waitlists can even be addressed - is simply finding where to get help.

"When you're already overwhelmed and exhausted, it's just like 'where do you even start?'"

Sam says she wished there was a central hub for parents wanting to learn about neurodiversities and which could point them to services that may be available to them. Just somewhere families could look at the end of a long, tiring day would be helpful.

One such digital platform trying to fill that space is KidsLink

Founded by teachers Michele Yock and Julie Whitcombe, the website lists services and experts available in New Zealand specialising in neurodiversities ranging from dyslexia to SPD.

The pair were inspired to create the platform after hearing from parents confused where to get their child's behaviour assessed and what the next step is. 

"Schools and parents want to find services," they say. "Specifically, they want to know who is out there, what do they do and how do they help. A Google search can be overwhelming, and the information found can sometimes be irrelevant to what they are looking for."

Michele and Julie say the services presented on the website work day-to-day with kids, teens and families, so have a current understanding of issues families are facing today.

"KidsLink provides an easy-to-use platform where schools and parents can find and read about local services, compare what these services offer and make the best decision for their student/family." 

The pair recently met with MP Jan Tinetti, a former educator herself, who they say was supportive of the website's ambition.

"[She] understands the need for collaboration between schools, families, and services, as she has been a Principal and a Learning Support Coordinator. She was very positive about the website and has asked for KidsLink to meet with Operations at the Ministry of Education."

Sam says anything that provides families with direction on how to help their children is worthwhile. While she can act as her "child's advocate", she worries about those who aren't "strong enough to do that" and believes having a centralised hub of information would make it easier for families to access support.

"Not everyone has the time and energy and effort to be able to put in for advocating for their child as much as I have," she says.

Sam and Brody's experience

However, as Sam found, finding a service is often not the only hurdle. 

"I've had to literally fight for seven years to get him seen by someone," she says when asked about her experience accessing support services. 

"This is not normal behaviour. A seven-year-old shouldn't say 'I want to kill myself' or be trying to physically harm me because I don't let him play Xbox. You know, it's just such extreme behaviour that I would have thought would have been a very big red flag."

The mother feels as if her desire to help her son has been repeatedly dismissed by those in positions to provide support. 

She says had to "beg" her GP for weeks to get an appointment with the Hawke's Bay Child Adolescent and Family Services (CAFS), a service that provides mental health support to children. Sam says the GP did everything he could, but his power to help was limited.

"I went to the doctor, I think, twice in a week, and I said, if you don't speed this process up somehow I'm actually going to have a mental breakdown, like, I can't cope with him."

CAFS received a GP referral for Brody last February and an appointment was set up for March, which is when the mother began to learn about the sensory issues. 

CAFS patients are normally seen within four weeks of referral, and the Hawkes Bay District Health Board (DHB) says "anyone who needs crisis mental health support is assessed immediately and referred to wherever is appropriate for that person to be seen or cared for".

At an appointment, Sam says she provided pages of notes about her son in the hope it would help with getting more specific support.

"I said 'here, this is what my life is like'," Sam says. "Day to day he tries to jump out of the car because it's too hot. He'll run out in front of traffic without thinking about it. This is how difficult my life is."

"She didn't read any of it. She just kind of said 'oh, you probably should go to a parenting course. Maybe actually mean what you say because kids know that you don't mean it if you say no and you don't mean it'."

Sam says she was disappointed with follow-up to that appointment and asked for help again multiple times. In June, the DHB says Brody was referred for specialist assessments, which were conducted in October and December. That's when the young boy was diagnosed with ADHD.

Last year "some appointments were delayed because of COVID-19", the DHB says. However some were "continued either by phone/zoom/facetime or some other link".

"Non-urgent referrals for specialist assessments by psychologists and psychiatrists received shortly after lockdown were also impacted by COVID-19 as the service caught up".

CAFS received another referral in March this year, with a further appointment arranged within eight days. But Sam feels little progress is being made and that she is just being made to beg for help again. 

The DHB, which employs four psychiatrists and five psychologists within CAFS, acknowledges challenges and uncertainties faced by families after the diagnosis of a disorder. 

"Support interventions are funded for CAFS patients until discharge and the service does link families up with NGOs and other known community/group supports," it says.

"The service is always happy to review patient needs and support if there are concerns."

The difficulty in finding help for neurodiverse children - and the Kiwis trying to change that
Photo credit: Getty / Supplied.

But Sam's concerns don't just lie with the public health system.

"Brody has had, I don't know how many psychologists now," she says. "I was paying for private occupational therapy, which is $115 an hour plus GST. I spent about $2000 last year doing that, which I'm not entirely sure helps, but it was great having a support network," she says.

"There are services out there that are available, but they're just so expensive and we are just not going to be able to afford that."

As a single mother studying while on the benefit, Sam has had to pull the pin on private support describing it as a "luxury". 

"You really have to beg. It is quite dehumanising having to beg for help for a problem that you didn't essentially choose," Sam says. "I just don't feel like it should be that difficult."

"I feel like I have to sit there saying 'I'm going to have a mental breakdown, I'm depressed, like I'm anxious, I'm having panic attacks'. I shouldn't have to say that to get help."

The Child Disability Allowance is available to support the main carers of children with a serious disability, providing about $50 every two weeks. However, Sam says that "wouldn't cover therapy or anything like that". 

At school, Sam says getting support is "even harder".

"These teachers are called SENCos (Special Education Needs Coordinator) and they're really only reserved for the extremely high needs children," she says. 

"Brody is quite a high functioning, high needs child, so he doesn't meet the qualifications at all. He tries really, really hard to kind of keep it together all day."

While teachers will assume he is doing well, Sam says they miss many of the signs that he is finding the day difficult. 

"It's things that probably only I would notice. When I pick him up from school, he's in a safe place and he completely has a meltdown."

Katrina Casey, deputy Secretary Sector Enablement & Support, says each school will have its own learning support system and most have a SENCo. The schools are responsible for deciding how their SENCo is used or accessed. 

"Schools use SENCos to identify the learning and wellbeing needs of students and look at ways those needs can be met, both in the classroom and at home," she says.

"They work alongside teachers and whānau to plan for appropriate supports. This may include identifying specific interventions that provide supplementary support to the classroom programme. Sometimes it may be supporting teachers to adapt their teaching and learning programmes to respond to a particular need."

As well as funding to access resources and aides, Casey says schools can access specialist support at no cost. There are ministry specialists such as psychologists and occupational therapists as well as specialist teachers called Resource Teachers Learning and Behaviour (RTLB). 

Since 2017, the Government has invested $1.1 billion into learning support with 180 more ministry specialists and 1000 RTLB. There are also 623 new Learning Support Coordinators. 

One mother is fighting to help other families with children with complex needs.
One mother is fighting to help other families with children with complex needs. Photo credit: Getty.

Petition for change

Having felt dismissed but also motivated to help others in her situation, Sam created a petition on the Parliament website calling for the Government to increase resources for and enhance access to children's mental health services. 

"I don't talk to many families who say they have had the best experience and just got the help we needed right away. I think overall the Government just needs to be doing better. 

"There are so many people who end up in jail because they have behavioural issues that were never picked up as children and these kids are getting failed right from the get go."

Asked about the petition and what New Zealand was doing to incentivise more occupational therapists and child psychologists to train, the Ministry of Health said supporting those with ADHD and SPD requires a "multidisciplinary input" with paediatricians and child health specialists also part of the mix.

It said support was available through DHB CAFS, Child Development Services (CDS) and Special Education services. 

"The challenges of ADHD and Sensory Processing disorders require this collaborative work across health and education, and it is acknowledged this can be difficult for families to navigate," a spokesperson said. "Intent to improve collaboration and coordination across these sectors is set out in the Child and Youth Wellbeing Strategy and related action plan."

The ministry says $35m is being pumped into CDS, which has employed 77 new health professionals, including occupational therapists and psychologists. It believes the funding will allow an extra 1150 children to be seen each year through CDS.

"A range of support is available, for example some DHBs offer ongoing walk-in child health seminars (jointly conducted by Child Development Services, mental health, and paediatric  outpatient) for families waiting for services. The seminars include parent/caregiver educational sessions on sensory processing, ADHD and related behaviours management, and self-care skills management."

Despite the support said to be on hand, Sam continues to feel let down. 

She says neurodiverse children are "so amazing in so many ways" and are "absolutely quirky, beautiful, [and] wonderful". She wants people to have a better understanding of the difficulties many are going through as well as the barriers their parents are facing trying to get access to help. 

"We need these services to be able to give our child a label just so that other people can learn to accept them," she says. 

"That's just something that I find really hard having to do, I think, to put that label on him so that I can say sorry, he's actually not a bad kid. He's just overwhelmed. He can't cope with this right now."

You can find Sam's petition here.