Our complex information requests service uses the combined expertise of our researchers, published research, professional experts and autistic lived experience to provide a rich response writes consultant clinical psychologist Jenny Gibbs.
ALTOGETHER AUTISM provides a national autism information service contracted by the Ministry of Health.
The objective of the service is to provide a comprehensive range of advice and information to autistic people, their families, professionals and to other interested people. When information requests are complex, we have a team of people available to help.
When Altogether Autism’s researchers receive a complex information request, they initially get to work to find out what the professional literature is saying about the topic. The researchers may then approach some or all of Altogether Autism’s advisory group members for their thoughts, ideas and opinions on the information request.
Our consumer group provides expertise and input in an advisory capacity to the work of Altogether Autism to ensure the service remains useful and relevant to autistics. It has appointed members with lived experience of autism and consists of autistic people and parents of autistic children. A minimum of 60 per cent of the group identify as autistic in recognition of the importance of the autistic voice.
Our professional group provides a multidisciplinary perspective and up to date information and opinion regarding best practice in the diagnosis, intervention and provision of services for autistic people.
The group has appointed members from a range of disciplines who have a regular and active role in the group on account of their expertise, knowledge and experience in the field of autism.
After consultation with the advisory groups the researcher integrates all the information into a single report. This provides a rich response which considers the published research, local clinical knowledge of best practice and systems and lived experience.
Autistic voices lead our work
Altogether Autism’s first strategic goal for this year was that autistic voices lead our work.
Our Consumer Advisory Group members are part of a strategy group which set goals for Altogether Autism considered important to the autistic community.
Representatives of the strategy group attend the management group meetings to ensure the autistic and parent voice are actively represented at the highest level.
In Altogether Autism’s day to day operations, our consumer members provide regular input. In addition to their contributions to information requests, they present at network meetings and workshops, write articles for the journal and website, advise of issues that are important to the autistic community, and host our Autistic 4 Autistic Zoom meetings.
There can be different perspectives and at times tensions within a group of neurodivergent and neurotypical people and in being a service that tries to meet the needs of autistics, parents and professionals, I personally feel privileged to be working with all our advisory group members as we navigate this space.
- Jenny Gibbs is a clinical psychologist at Waikato DHB’s Child Development Centre and is Altogether Autism’s consultant psychologist
- This article first appeared in Altogether Autism Journal, 2021