Autism

What is Autism?

Takiwātanga (autism) is a neurodevelopmental difference that changes the way a person acts, communicates and experiences their world (Rudy, 2024).

The Te Reo Māori term, takiwātanga, translates as "in their own time and space".

This is an accurate description of the autistic experience which may involve the internal world of the child or person being a safe and rich place for them to be. Their external world can be confusing, overwhelming and alien to them.

Autism is not a mental health condition, it is not caused by trauma and it is not the result of poor parenting. Autism and mental health conditions do occur in up to 79% of autistic individuals according to Dr Tony Attwood and Dr Michelle Garnett (Garnett & Attwood, 2023).

Characteristics of Autism

Every autistic person presents in a different way.

Autistic people often have the following symptoms in common:

sensory processing challenges
difficulty in social communication
repetitive or rigid behaviour
inflexibility of thought
self-stimulating behaviour - stimming e.g. hand flapping, toe walking
high levels of anxiety or separation anxiety
fears rejections
difficulty regulating their emotions

Diagnosing Autism:

Due to this individualistic presentation, it can be difficult to diagnose autism, particularly if the Autistic person is used to masking (hiding) their autistic traits. Currently, those who display a more typical presentation of Autism e.g. non-speaking, high sensory needs, developmental delays in communication/motor skills, and extreme rigidity in routines will be diagnosed in early childhood. While others will not be diagnosed until later in childhood, within the teenage years or into adulthood (Kandola, 2024; Price, 2022).

Additionally, ethnic minority groups such as Māori and Pacifica in Aotearoa are underdiagnosed (Foon, 2024; Nafatali, 2023). Worldwide it is more likely that a child of colour or an indigenous population will be diagnosed with a conduct disorder than with a neurodevelopmental difference such as Autism or ADHD (Price, 2022; Nafatali, 2023). The current assessment test regimes were developed for dominant cultural groups (Nafatali, 2023).

There is also a gender divide where boys are diagnosed more frequently than girls, the ratio is about 4 boys: 1 girl for diagnosis (Price, 2022).

There are several reasons why this occurs:

Girls are socialised differently to boys and are more likely to mask in social situations (Price, 2022).
ADOS and other autism assessment tools such as ASD-Detect Application are designed to pick up externalised symptoms of Autism and do not take into account masking during the assessment. Nor have they been developed with subject groups that represent all cultural/ethnic variations in the presentation of autism (Price, 2022).
Autism is a spectrum disorder that presents differently in different people, different cultures and genders.
Girls tend to cope better socially within their early childhood settings and often do not experience noticeable difficulty in their social interactions until they reach school age and the social/school demands increase (Price, 2022).
Girls are more likely to internalise their difficulty and may present differently when they do not think they are in a safe space to freely express themselves (Price, 2022) . This is called masking.
Girls may hold it together at school or in other social situations and then come home and lose it. These are called meltdowns where the person has reached and passed their sensory threshold (Price, 2022).

This image describes the three levels of autism. ASD level 1 requires support: may have a hard time communication with neurotypical peers. Level 2: requires substantial support: may find it hard to communicate in a socially acceptable way. Level 3: may find it impossible to mask and have high sensory needs.

The Three levels of Autism, illustrated by Zoe Hansen, in Rudy, 2024.

Sourced from: https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233

The three levels of Autism

The diagnostic and disorders diagnosis manual (DSM-5) has stipulated that there are 3 levels of Autism (Kandola, 2024) . The levels are assigned based on the level of support an individual will require across two main symptomatic areas; social communication and restricted or repetitive behaviours (Kandola, 2024) .

It should only be used as a guideline as it does not fully encompass the complexities of the condition, but can be a helpful tool for providing support and services (Rudy, 2024).

Here is an image from VeryWell Health by Zoe Hansen which encapsulates simply what these levels look like (in Rudy, 2024).

Why diagnosis matters

People within the Autism community have found it freeing and validating to know that they are Autistic. To them, it is an innate part of who they are and how they experience the neurotypical world. By knowing that they are autistic, they can better understand themselves and be better supported by the people around them (Price, 2022; Moriah, 2022).

The path to diagnosis is not always easy. It isn't easy to access through the public health system, expensive via the private system and can take multiple assessments with multiple professionals before it is diagnosed (Nafatali, 2023). This can be very frustrating for the person and the whānau who are trying to understand the challenges that living as Autistic brings.

By obtaining an official diagnosis, mokopuna and whānau can access support services such as the child disability allowance, respite care allowance, carer support funding and individualised funding. Different regions have different funding providers. In Tāmaki Makarau, Taikura Trust is the governing organisation and provides a NASC (Needs and services assessment co-ordinator) to determine which services are most suitable for the person who has been diagnosed.

Your diagnosing pediatrician can link you to the Te Whatu Ora (Health Ministry) support and should act as a case manager for health-related services such as occupational therapy, physiotherapy, speech-language therapy etc. They can also refer you to the Explore behaviour support service. This is the only publicly funded behaviour support service offered by Te Whatu Ora.

Schools should have a SENCO (special education coordinator). The SENCO is responsible for organising learning support within the school. Some schools also have an LSC (learning support coordinator) who works with the SENCO to support kaiako, whānau and mokopuna to ensure that mokopuna experience success at school.

They can support whānau to access further support through the Resource teacher service (RTLB). They can also apply for assistive technology funding, in-class support funding, ongoing resource scheme funding (ORS) and Ministry of Education services such as occupational therapists, speech-language therapists and support from a special education advisor. The Ministry of Education also has this designated webpage on supporting children and young people with Autism.

Unfortunately often these services have long waitlists and not enough capacity to see everyone. Please be patient with schools as they try to access these.

As a whānau you can approach private providers for some of these services if you have the means to pay for them. In the past, you have been able to utilise carer support and individualised funding to pay for some of these. However, it is best to check with your funding provider whether you can still use it for these things.

Below we have linked several helpful websites and Facebook Groups that you can access to get support within your community.

There are also some excellent courses that are provided by Autism New Zealand that are very supportive for kaiako, whānau and mokopuna in understanding how best to support your mokopuna. Tilting the Seesaw is a course that can be applied for by your child's school which you and their teacher will attend. Many parents who have completed this course highly recommend it.

The Autism Guidelines & further information

Autism Guidelines

Here is a summarised version of the 3rd version of the Autism guidelines that were released in 2022 (de Stigter, 2023).

This is an extensive guideline that stipulates best practice for Autism in Aotearoa.

New Zealand Autism Guidelines.pdf

‘If in doubt ask’: Scholar wants autistic community to be given their sayPacific families and their experiences of autism are now being voiced thanks to the world-first research of Rochelle Nafatali.

Here is the Pasifika Autism Support Group website:

This site includes the quick cards for recognition of Autism translated in Samoan, Tongan, Cook Island Māori and Te Reo Māori.

Pasifika autism group a 'vehicle for change'Pacific communities with negative perceptions of autism are being challenged to rethink their views and the language that describes people on the spectrum.

Information for supporting Autistic children in the classroom

Classroom Support:

Classrooms are very busy places and can be overwhelming for mokopuna with Autism.

Kaiako and whānau need to work in partnership with each other in order to provide a safe and stimulating environment for mokopuna to learn and thrive in.

Below we have linked to some helpful blog posts and courses that can help support Autism-friendly classroom practices.

There is also a downloadable teacher tip sheet for working with mokopuna with Autism.