Autism. Embrace the Amazing.

“Autism, Embrace the Amazing” provides a glimpse into the world of an autistic child and their families. Roman, Michael and Fa’alili are on the ‘spectrum’, a reference to a range of conditions classified under the Autism Spectrum Disorder (ASD). Understanding ASD has helped their families to respond better to their children's needs.

Roman, a 17-year-old student with autism shares what he wants others to know about him. “I like people to be nice to me and I like them to be kind. I like to be friendly and I like to have fun. And I want to be happy and funny”.  Roman also loves maths, pluses and times tables and attends school every day in a taxi. While some people with ASD can live independently, others may require extra support.

Dr Teuila Percival describes ASD as ‘hugely variable’.  “The way that children experience autism is different for every child” says Dr Percival. Many children with autism respond better to routines.  Fa’alili’s dad David says “having that routine, doing the same thing over and over again helps her know what to do everyday”.

Roman’s parents Betty and Brian wanted to do more to support other parents with autistic children as they experienced a lack of support for Pacific families. The Pasifika Autism Support Group, or PASG, is a volunteer driven support group. “Pasifika Autism Support Group is a parents group designed by parents for parents” describes Betty.  “It’s about real-life experiences and real-life case scenarios that we’ve achieved with our children” mentions Brian.  “It’s a place where we can come together and support each other as well”.

Michael’s mum Rachel wants to ensure her son can live as full a life as possible and describes her hopes and dreams for her son. “Independence, happiness and just doing the things he loves and being able to communicate effectively”.

Many children with autism experience stigma and discrimination. Families with autistic children want others to be more understanding of their children and to withhold judgment over behaviours that may be perceived as negative.  “Just don’t look at our kids differently” pleads David.  “Don’t get upset at it, don’t think that they’re being naughty or they’re misbehaving or they’re being bad kids. It’s just the way they are, they’re beautiful kids”. 

Dr Percival also implores others to get to know autistic children as they can have a profound effect on the way you see the world.  “If you take the time to get to know something with autism, whether they’re a child or an adult, because of the way they see the world, you are going to experience a lot of different things which will make your life interesting. So take the time to get to know people with autism and you’ll see the world through a different lens”.

Autism spectrum disorder (ASD) refers to a range of conditions characterised by some degree of impaired social behaviour, communication and language, and a narrow range of interests and activities that are both unique to the individual and carried out repetitively.

ASDs begin in childhood and tend to persist into adolescence and adulthood. In most cases the conditions are apparent during the first 5 years of life.[1]

[1] Autism spectrum disorders – Key Facts

“They are beautiful kids.  I wouldn’t change her if I had to do it again” 

“The way that children experience autism is different for every child”

“There are not a lot of support in the health systems once diagnosis is made…”

“Our dreams and hopes for Roman are that he will grow up to be an independent person like everyone else”

“We do not want autism to be a stumbling block or a hinderance of who he can be”

“…Independence, happiness and just doing things he loves… and being able to communicate effectively… It would give me peace of mind to know that he has those things, and to be happy”.

‘…One of his specialists came through and said he is not going to be a rocket scientist…It’s circumstances like this that I like to prove to the specialist that, you don’t have a right to say that sort of stuff to our children, because you are not the end of our son’s journey”

“I like people to be nice to me”

“I like them to be kind”

“I like them to be friendly”

“I want to be happy and funny”

“I just want to make some new friends”

“Don’t look at our kids differently”

“If you take the time to get to know someone with autism, whether they are a child or an adult, because of the way they see the world, you are going to experience a lot of different things which will make your life interesting”

“Take the time to get to know people with autism and you’ll see the world through a different lens”

  • Have a routine
  • Put together a visual homework plan
  • Use your child’s special interests where possible.  For example, singing
  • Use technology if necessary
  • Access autism support groups
  • Seek help if needed and do not try and do everything

Key facts:

  • One in 160 children has an autism spectrum disorder (ASD)2
  • Characteristics of Autism:
  • Language and communication
  • Social skills
  • Inflexible thinking
  • While some people with ASD can live independently, others have severe disabilities and require life-long care and support.
  • Evidence-based psychosocial interventions, such as behavioural treatment and parent skills training programmes, can reduce difficulties in communication and social behaviour, with a positive impact on well-being and quality of life for persons with ASD and their caregivers.
  • Interventions for people with ASD need to be accompanied by broader actions for making physical, social and attitudinal environments more accessible, inclusive and supportive.
  • Worldwide, people with ASD are often subject to stigma, discrimination and human rights violations. Globally, access to services and support for people with ASD is inadequate.

Altogether Autism
An information and advisory service for people with ASD, their families, whānau and the wider New Zealand community.

Autism New Zealand
An organisation offering support, training, advocacy, resources and information on ASD including Asperger Syndrome.

Child Development Service
If your preschooler has a disability, or isn’t achieving developmental milestones, Child Development Services are here to help you.

Cloud 9 Children’s Foundation
Support and information for children and teenagers with Asperger syndrome and their families.

Pasifika Autism Support Group
A new initiative for Pasifika Parents and carers to meet with others who support and share similar experiences, gain new information, and to bring awareness of Autism to the Pacific community

IDEA Services
IDEA Services provide three fully funded autism programmes to families throughout New Zealand for children under the age of 19 years with a diagnosis of autism.

Kids-health
An initiative of the Starship Foundation and the Paediatric Society of New Zealand.

Ministry of Education
Find out what the Ministry of Education is doing about autism spectrum disorder.

MSD Family Services Directory
The Family Services Directory can help you find local support for you or your family member.

The Werry Centre
The Werry Centre has been contracted by the Ministry of Health in consultation with the Ministry of Education to develop a training

The package of disability support services is determined according to the person’s identified individual disability support needs by a Needs Assessment Services Coordination (NASC) organisation. Disability supports are funded by Disability Support Services in the Ministry of Health.

Support services for people with ASD
The following ASD-specific support services are available:

  • ASD-specific Disability Information and Advisory Services (DIAS)
  • ASD parent education (ASD Plus, TIPS for Autism, Growing up with Autism)
  • ASD Communication and Behaviour Support
  • ASD Developmental Coordination.

There is also a range of other disability support services which include such services as home and community supports, supported living, respite and carer support.

Accessing disability support services
People with ASD may be eligible for disability support services and can contact their local NASC organisation. The NASC will undertake a needs assessment to determine what disability-related needs a person may have. The NASC may then allocate disability supports to meet the identified disability-related needs.

Eligibility criteria is nationally consistent
Disability Support Services (DSS) has developed a clear, nationally consistent approach to accessing disability support services for people with ASD. From 2 April 2014:

  • people with a sole diagnosis of ASD as well as people with ASD and another co-existing physical, intellectual or sensory disability can access disability supports through DSS
  • people who currently access disability support services will have no change to their level of support.

More information
People who would like to find out if they can access disability support services should contact their local Needs Assessment Service Coordinator.

To find out more about ASD see our Your Health guide to Autism Spectrum Disorder.

https://www.nznasca.co.nz/

Resources:

Pacific resources:
http://www.asdpasifika.org.nz/news–resources.html

Respite services and supports:
https://www.health.govt.nz/your-health/services-and-support/disability-services/getting-support-disability/needs-assessment-and-service-coordination-services

Pacific language resources developed by the Pasifika Autism Support Group can be accessed below:

Samoan language resource:
http://www.asdpasifika.org.nz/uploads/7/7/9/3/7793072/asd_quickcard_samoan.pdf

Tongan language resource:
http://www.asdpasifika.org.nz/uploads/7/7/9/3/7793072/asd_quickcard_tongan.pdf

Cook Islands language resource:
http://www.asdpasifika.org.nz/uploads/7/7/9/3/7793072/asd_quickcard_cookismaori.pdf

For more information about Autism, see Autism New Zealand:
https://www.autismnz.org.nz/