I have just returned from Auckland, New Zealand/Aotearoa, where I was attending and speaking at the Altogether Autism Conference. This is an interesting conference that is designed to showcase both academic and non-academic research and work in the area of the autism spectrum. It attracts a range of health, education and support professionals as well as autists (people on the autism spectrum) and families of autists. The organisers from Altogether Autism and Parent2Parent NZ seem to be very much on board with the advocacy catchphrase ‘nothing about us without us’.
Attendees appeared to both listen and hear the autist keynote speaker and other autist speakes, which was fantastic as our message can be challenging at times, which makes it hard to hear. In turn, I heard the care and love in the voices of parents explaining their struggles to raise their autists to live good lives when support services are unavailable or unable to meet needs. One session I attended I hope to add onto the resources page was around medication and the autism spectrum and I was impressed with how the message of the need to look behind the observable symptoms was so well received by the health professionals present. The challenge inherent in this is time and the scarcity of continuity of care with key health care workers.
I personally was in awe of the autist who disclosed how their professional image hid their difficulties and struggles in life. This is something that we autists find hard to express in a way that others can really hear what we are trying to say; we can have successful careers and family lives, but this does come at some personal costs.
I also heard that the lack of resources in community languages is an issue and I am looking forward to working with the Pasifika Autism Support Group to change this by helping with information for leaflets in a variety of Pacific Island languages.