Accepting Autism

For Immediate Release
Accepting Autism
1 June 2009

This week is Autism New Zealand’s Annual Appeal and with autism, Asperger’s syndrome and other related disorders becoming so widespread it’s vital that the support and services provided by Autism New Zealand are available to help families cope with the many challenges they will face in life.

Autism Spectrum Disorders (ASD) are still relatively unknown and although there have been some increased awareness about the widespread need for support for families over the last few years, autism and Asperger’s syndrome is still considered to be a growing health crisis.

People with an autism spectrum disorder look the same as other people but because of the invisible nature of their disorder it can be much harder to create awareness and understanding.

A significant step forward in creating awareness and acceptance is the introduction of characters on TV who have an autism spectrum disorder (i.e. Boston Legal, Grey’s Anatomy and just recently NZ’s own long running soap Shortland Street). Many people with autism can have unique talents and skills as portrayed on these television shows – but because they find it challenging to develop social skills, so often they are misunderstood.

Autism is a ‘life-long’ disorder. Surveys have shown that parents of children with autism suffer the highest stress levels of any condition including terminal illness. For many families accepting autism will be part of their life whether they want it or not, can be difficult. The reality is that parents of children with autism frequently become frustrated as they struggle to get the help they need and are constantly worried about their child’s future when they are no longer around.

And if that isn’t crushing enough, there are the implications to society’s lack of acceptance as well. Tantrums in public are common with children with autism, and so are the harsh looks and the unfair judgments that the child is a brat or that the mother is a bad mother.

The voice at the end of Autism New Zealand’s free phone 0800 AUTISM (0800 288 476) number is the mother of a 9 year old girl who has autism. Marion Johns reveals that all too often she hears the frustrations and concerns from parents who phone in. Marion pulls on her own personal experiences with daughter Casey to help families accept autism and offer coping mechanisms to deal with the challenges that life will offer them. The fact is parents must feel empowered and become the biggest advocates when they need to be.

Marion says, “Accepting our child had autism was never an option – it was a given. We have watched Casey grow and become a very delightful child, but this was not something that just happened. Because people with autism become anxious about change, we as a family, have become extremely good at planning well in advance to help Casey cope with major transitions”.

One example Marion recalls is when they decided to move from Timaru to Christchurch. For most, the process is simple, but for the Johns family it was a long well thought out process - taking almost a year.

“Our older daughter Alice was about to start high school and we felt it was important that the right school was found for her first,” says Marion. "Siblings can often feel left out or feel that they are not part of the family unit as parents spend so much time with their child with autism.

Because of the school zoning restrictions in Christchurch, this determined the area they would buy a house in. They then found 3 primary schools in that area and interviewed the Principals of each school to find out which one was proactive. Further interviews took place with the Special Educational Needs Co-ordinator (a teacher with responsibility for co-ordinating special needs support within a school) and the RTLB (Resource Teacher Learning & Behaviour) which determined what school would be selected.

“As autism involves specific sensory issues, I had to rule out one school because the uniform had a red jersey,” says Marion. “Casey won’t wear red and I didn’t want to have to deal with that battle each day” she explains.

Over the next 3 months, every time they came to Christchurch there was a series of visits to the schools, the classroom, and the playground, meeting the teachers as well as visiting their new home and bedrooms. This all sounds like a lot of trouble but they wanted to ensure that the transition was as familiar and calming as possible.

“By putting a plan in place and making sure that the same things were done for both girls, both were able to accept the changes.”

Marion allowed the school to disclose that Casey has autism and talked to students about how she was a little bit different - the kids have been very accepting. “I still contact the school to see how things are going, especially if Casey has a meltdown, to see if we can determine the trigger. Just like all mothers, I really just need to know that she is okay.”

Autism is often referred to as living in another world. But for many parents they would like our world to be a place where their child with autism is accepted, where they can go out in public and not worry about their child’s behaviours, where they can take their children to birthday parties and shopping without a label being put on them for all to see. Because we don't look at our children as autistic - we look at them as a child first, that just happens to have autism.

18 months on from the move, Casey is now well integrated in the school, keeping up with students and in fact, loves school. She has good friends and has even been invited to her first birthday party – positive proof that she has been accepted.

One thing that parents of children with autism learn is to be in the moment, to celebrate the progress their child makes every day and accept that first and foremost they are a child who just sees things a little differently. The other thing is that sometimes you have to focus on your child’s failings and stress their differences to get the support and help needed which, as a parent can be extremely difficult to do.

Marion concludes, “to me, acceptance also includes appreciation and respect – whether a child has autism or not. By working together as a family and accepting autism, we are able to do all we can to help Casey be as independent as possible and reach her full potential in life.

So when you see Autism New Zealand collectors on the street this week please dig deep in your pockets and give a donation to help those affected by an autism spectrum disorder. By giving us a hand we can help empower families to make informed choices and help those on the spectrum be accepted and embraced in the community. As although there is no cure, with support and understanding people on the spectrum can lead fulfilling, rewarding lives.

Background

ABOUT AUTISM
Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by extreme behavioral challenges. Autism spectrum disorders are diagnosed in one in 100 children in New Zealand, affecting four times as many boys as girls.

ABOUT AUTISM NEW ZEALAND
Established by parents, Autism New Zealand is the leading not-for-profit organisation on Autism, Including Asperger Syndrome and Related Disorders. Our mission is to improve the quality of life for people with autism, Asperger’s syndrome, those with associated conditions, their family/whanau and those who support them.

Our main purpose is to provide information, support, resources and training on autism spectrum disorders. We focus on developing an understanding of individual’s needs, of the autism spectrum and of how health and education professionals, caregivers and parents can provide support to enable the person affected by an ASD to be inclusive in the community. We promote that acceptance and compassion is necessary for children with an autism spectrum disorder to grow up with opportunity and support.

For more information visit www.autismnz.org.nz

Autism New Zealand Incorporated is registered as a charitable entity under the Charities Act 2005, Registration number CC21220

ENDS

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