Autism Connex: Our Story

Firefighters Blake Marston, left, and Nick Hackling prepare for the car wash fundraiser with with Victorhea Tongi, 9. 8 November 2017.

Co-organiser of The Sapphire Ball, Theresa Tongi is in preparation mode before the big night. 11 April 2018 .

From Theresa

“At the age of 5, our daughter Victorhea had a dream that her little brother Henry who was 3 years of age at the time would have a place to go where being Autistic didn’t matter. She shared this dream with me on the way to school one morning and said that I needed to do something to make it happen. She spoke with such authority and conviction that I knew at that very moment a seed had been planted.

When our second son Andrew was diagnosed a year later, our world was rocked and changed for ever. The dreams we had for our boys and all that we had hoped for seemed to slip away right before our eyes. Why us? What does this mean?

Over the past 6 years, life for our family has been for the most part, a very challenging journey. We know how vitally important it is for parents to get a break from the day to day challenges of raising children with special needs. Our experiences from the early stages of diagnosis to finding out what services and supports are available for our family, have motivated us to provide that place of belonging for other ASD families.

What if there was a place where families like ours could go and relax for a moment? A place where we don’t have to say sorry all the time. A place where our boys can run around and play with all the light switches and it wouldn’t matter. A place where behaviours aren’t judged. Somewhere safe.

In 2014, inspired by Victorhea’s dream, the Autism Connex vision was born. Our story has evolved around our own personal journey with our two son’s Henry and Andrew. Our lived experience as parents has motivated us to see this vision of a purpose-built Autism Spectrum Centre become a reality here in Taranaki.

Today, Autism Connex is a non-profit organisation supporting families who have children/teens with Autism Spectrum Disorder. Autism Connex Trust was established in 2018 and is a registered charity with a board of 11 Trustees who include, ASD parents, local business owners, educators, Police and medical professionals (Paediatrician and an Orthopaedic Surgeon). Our newly appointed Patron is Sir Michael Jones.

For the past four years, Autism Connex has supported more than 80 Taranaki families and is currently working with the Taranaki District Health Board to develop support groups and resources, free monthly respite care sessions and workshops for families.  In 2019, Autism Connex will introduce additional events to cater for all our family members. These include, Mums night out, Morning Coffee Group, Mens Breakfast, and support for siblings.

Due to the challenges of raising children with ASD, many of our parents and their siblings, often feel isolated and disconnected with family and friends. Families experience high levels of stress due to the ongoing challenges like, sleep deprivation, lack of school support, financial hardship which can often put a strain on marriages and relationships. It is believed that up to 80% of marriages end in divorce for ASD families.

The Autism Connex family day is a free monthly event for ASD families living in Taranaki. We create a safe environment for our families to meet with others who understand their unique journey. At the same time, our children and their siblings enjoy a time to play and socialise with others in a safe and friendly environment where they can be themselves and their behaviours are not judged. This event is made possible by a dedicated team of 20 volunteers.

The various groups and events offered by Autism Connex will continue to help support and enhance the wellbeing of all our family members.”