'An absolute joke': Autistic boy left on waitlist for over a year despite early diagnosis

An Auckland mother calling out the lack of funding and resources available to neurodiverse children says support is urgently needed to catch up with the accelerating rates of diagnoses.

Monica's son was diagnosed with Autism Spectrum Disorder (ASD) as an 18-month-old - but a year later, he is still on waiting lists for Ministry of Education (MoE) assistance for speech and language therapy, and a support worker. 

She says early intervention is an "absolute joke" in New Zealand, as she battles to access services that can give her son the best chance at living a life with as many opportunities as possible to his neurotypical peers. 

"The waiting lists are getting longer and longer but the funding is not keeping pace with this exploding epidemic. We are told we won't be picked up until he's three years old," she told Newshub.

"I can do nothing with that diagnosis because no meaningful help is available."    

Ministry of Education's enablement and support manager Katrina Casey told Newshub learning support in education is based on understanding the strengths and needs of children within the context they learn, not a diagnosis. 

But Monica refutes this, and says the fact a child can be diagnosed so young points to the serverity of their austism and believes the system isb't set up for children under 3 years old.  

She says the Government must take action to help parents once a neurological difference like autism, ADHD, and dyslexia has been identified in an attempt to give all kids an equal start. 

Early intervention can improve communication, social skills, and comprehension abilities while assisting brain development. 

The mother-of-three feels grateful to even have got a diagnosis so early at all through pediatrician appointments paid for by private medical insurance, understanding that many parents have difficulty establishing that as the starting place to seek treatment options

"When a child is first falling behind in development, there should be referrals made and early intervention should start kicking in. Parents should not have to wait more than three months for support."

Autism NZ boss Dane Dougan says recent research on the diagnosis process and post-diagnosis support in New Zealand shows an average wait time of almost three years, from the point when someone says the child is "acting a bit differently", or showing signs of autism, through to getting a diagnosis.  

He says to learn Monica hit a wall after the diagnosis is disappointing. 

"The average age of diagnosis is six or seven - so often those early years are missed where we can actually make more of a difference. So a diagnosis at 18 months is surprisingly good in New Zealand - but to not have support for another 12 months after that is ridiculous," Dougan explained. 

Based on international and World Health Organization figures, one in 59 people are diagnosed with autism - but Dougan says over the last three to five years there's been an increased rate of diagnosis around the world for two reasons.

"We are seeing better awareness of autism now out there in the community and also all around the world. Because of that there is better diagnosis going on, so there are more people being diagnosed," he told Newshub. 

"There's a genetic link as well - there's absolutely no doubt you're born with autism and from what we see and hear, a lot of people will go in and get their child diagnosed, and then look at someone else in their family or themselves and then they get diagnosed as well, which increases the rate." 

He says although there are no official records tracking the number of Kiwis diagnosed with autism, the evidence indicates most western countries are similar and increasing rates are happening here too. 

But funding faces restrictions and significant waitlists are fueling an ongoing challenge for parents, according to Monica. 

Dougan says the gaps hurting parents are not good enough. 

"This is something we are trying to change significantly because all the evidence suggests the earlier that we can intervene and support that child and family, the better chance that child goes on to live the life they want to live," he told Newshub. 

For preschool-aged children, MoE support includes the Early Intervention Service which provides specialist support for children who have an identified need - like a developmental delay, disability, or communication difficulties, from birth until they start school. 

To access the typical level of help parents can access in the US - up to 40 hours on average -  would cost around $9000 a week in New Zealand, Monica says. 

"Nobody can afford that without winning the lottery, so instead you work hard to pay for two to three hours of private therapy, which really doesn't make a great deal of difference because it is so minuscule, but is better than nothing. That's where we are at." 

Ten years ago, when Monica's eldest son was diagnosed as autistic, she says the condition wasn't as prevalent as it is now, and he got one-on-one therapy from a Speech and Language Teacher (SLT) from the MoE every fortnight for an hour.  

Early intervention can improve communication, social skills, and comprehension abilities while assisting brain development.
Early intervention can improve communication, social skills, and comprehension abilities while assisting brain development. Photo credit: Getty Images.

He also had an early intervention therapist for around five to six hours per week, as well as an early support worker who worked around two to three hours per day at kindy with her son, and there was no waiting list at all.    

"Essentially there was much more one-on-one work with the child who needed it, and my son did so well as a result. We supplemented with privately paid for therapy, but much less was needed because of the support MoE was able to provide, because obviously back then the funding was for fewer children."

She says now they try to justify their 'train the teacher/parent' model because their funding has to "stretch so much further over so many more children".

Monica says she recently heard from a  Ministry of Education speech and language therapist who explained she can provide between 10 and 25 hours of help per year.

"In those 10 to 25 hours they train the teachers and parents because we spend up to 45 hours and 84 hours respectively a week with our child, and so we are the better ‘teachers’.  Frankly to me, that is just rubbish - it is simply trying to justify the abysmal funding structure in place. 

"There is no one-on-one therapy with the child, and they explain this as not needed because teachers and parents can do what a qualified, experienced, trained therapist can do.  Utter garbage. " 

Monica believes supporting children through early intervention could mean they will need less from the health system later in life.

Her little boy was added to the family's medical insurance when he was a few days old, but because he wasn't diagnosed until 18 months, his ASD is not counted as a pre-existing condition, meaning insurance won't pay for any type of therapies for him which are critical to his outcomes. 

"It’s like only paying for a cancer diagnosis but not all the medicines and therapies one needs following diagnosis. That should be unacceptable. In the US, medical insurance does pay for all the therapies."   

She says in the US a whole team of early intervention therapists provide support from physiotherapy (or physiotherapy) to Applied Behavioral Analysis (ABA) amd Speech and Language Therapy (SLT) as well as occupational therapy. 

"Even when we finally make it up the waiting list in NZ – SLT will be fortnightly if that and he/she will train the day-care teachers and parents how to teach your child language."

As well as some financing from Government, Casey says processing improvements like an increased collaboration between specialists, teachers, and providers have reduced the waiting times for Early Intervention services across regions, with a current waiting time to receive support of 86.77 days. 

Monica says she doesn't accept that applies to her situation. 

"It seems to be 86 days provided your child is 3 years old. If you get an early diagnosis as we did, there's no way you get any support from MoE until your child is 3 year old. If you're younger than 3 years old, there's is no early intervention support - not unless you pay for it yourself until you get a small amount of help from 3 years onwards." 

Casey added the 2019 Budget provided an extra $24.8 million over four years in addition to $21.5 million over four years as part of Budget 2018, but Dane Dougan believes that isn't enough to cater to the people who need it. 

"We don't believe there's enough funding in the system for our community, we believe it is very underfunded," Dougan said.

"Based on the 'one in 59' figure, an estimated 80-90,000 people in New Zealand are diagnosed, and we know that only around about 8000 of those are getting support services - not all of the 90,000 people would need support, but more than 8000 would.

"That's not great and we definitely need to look at that." 

Dougan says throwing money at the issue will obviously help, but it's the whole system that needs to be changed. 

"We need to make sure we have therapists, support workers, carers, whoever the case may be, who understand autism and can actually make a positive difference in that person and that family's life."