19 November 2018 – Almost a decade ago, writes Barbara Choat, a small group of young autistic adults in Hamilton got together to form a social group that was an autistic friendly place to make friends and have fun together.

THE STORY OF the ‘Voices From The Spectrum’ Trust is one of autistic adults creating a place for themselves run by themselves.

Our autistic adults are capable, intelligent people who are ready to make changes to better the lives of our people but we need a structure in which to organise things. Big things can grow from small beginnings.

They had tried the existing social groups set up for autistic people at the time but had found that, because they were independent and capable individuals, they often found themselves acting as helpers to other autistic people who had supervisory and/or other support needs at these groups. This often resulted in their own social needs not actually being met.

So they got together and formed a group for autistic adults who did not need supervisory support or care but who wanted a place to form like-minded friends. It is this group of autistic adults who never received extra support growing up and who fall through the gaps in service provision because their needs go unrecognised.

But their needs are very real and their struggles to fit into a world that is structured by, and for, non-autistic people are very real.

They may look very capable but life can be very tough sometimes. It is very common to find our autistic adults isolated and living with depression and anxiety conditions. Housing problems and homelessness are issues for many too.

The vast majority are unemployed, or grossly underemployed, even though so many have quite accomplished academic portfolios.

Employment can be difficult if you are seen as different by employers and your learning style does not easily fit into the traditional type training or working models. Many also have co-morbid conditions or age related problems to deal with which complicates things even more for them.

Life can be tough for our autistic population but things can be done. When people get together, they share stories, they share problems and they start seeking solutions to them. This is why groups like ours are so important.

Autistic people often struggle with social communication and some can have sensory difficulties with some social environments so it was originally planned that we should meet up on the quieter Monday nights at the various pubs, restaurants and activity venues around Hamilton.

Hence the ‘Monday Mates Group’ was started. Lots of activities were planned and happened: quiz nights, go-carting, snooker, bowling, mini-golf, meals out etc, with some good, long term friendships formed.

We never actively advertised the Monday Mates Group as it was initially seen as just a group of mates getting together but it soon became so much more. As people heard about it, our numbers grew as more autistics joined us, until it got to the point where the group was really too big to continue as it was.

We have a very strong base philosophy that if the need is there then we need to try and fill it. We also began to recognise that many adults who ‘fitted’ into our group did not have an ‘official’ diagnosis of being on the (Autism) Spectrum but ‘just knew’ and were very much ‘peer recognised’ as being ‘one of us’. Sometimes this is an age thing too as older people never got a diagnosis when they were younger. Our group caters for 18 year olds right up to a few people approaching their retirement years.

Often we will find a parent or sibling actually attending as well because they recognise that they ‘fit’ here too. There have been lots of discussions around the use of terminology such as being seen as ‘neurodiverse’ and where this fits comfortably under the spectrum’s umbrella.

We also have interesting discussions around how autism and terminology is used under different models of thinking such the medical model vs. the social/cultural model and others. Our group recognises, respects and celebrates neurodiversity in relation to the Autism Spectrum.

Thus, the original structure of this group was forced to change. The base philosophy of those using the group should dictate what the group did still held firm but was being compromised because the larger numbers meant a reduction of the variety of group activities being done. It had become a consistent night out at a restaurant, pub or bar instead.

We needed more structure around our social group network to ensure they could continue and have the resources they needed with more coordinators to ensure a variety of activities and social situations were made available to our people.

We also needed a base where we could meet up regularly which was user friendly to us and catered for the spatial and sensory needs we had. With this comes increased costs of course and we are very aware of the fact that the majority of our people live on benefits and restricted budgets so the need for a charitable trust that would help raise the money needed for our activities was mooted.

Thus, the ‘The Voices from The Spectrum Trust’ developed naturally out of this growth. We stay true to the group of people we serve and state clearly that our group is for adults who identify with the spectrum who are independent enough not to need supervisory support or care. We do not provide support staff. There are other existing networks that we can refer people to if they need this level of support or care. This trust is therefore being run by the people it is there to serve. It has been structured carefully to ensure that people who use the social groups etc are heard and that what is needed is provided.

Now we have a structure where our group can get together as a whole as well as in smaller topic based groups such as film groups, an Anime group, a couple of games groups, a quiz group, a women’s only group, an adventurers’ group or just small groups to chat in – we form groups to match whatever is wanted.

We are now finding that, with their increased confidence, our people are starting to plan further. We have organised a self-advocacy course specifically tailored to the issues pertinent to our group and using a presentation format more akin to autistic learning styles in an environment that is autistic friendly.

When people get together they start talking and common interests, talents, strengths, issues and problems are raised and shared. Solutions to common problems get discussed and ideas and plans start formulating.

We are proactive and want to explore solutions to common problems for our people that may include in the future exploring different employment and accommodation models. Although we are a local group, we are aware of the use of the wider internet and social media and how we can use this also.

Everyone has times of difficulty and crisis in their lives but where does one turn if you need an ear that understands what you are going through as an autistic adult? Peer support networks are important in so many ways. Many of us are lucky to also have family support but as we age things may change. So many people often find themselves feeling alone or misunderstood and struggling. Isolation makes all of this worse. We all need help at times – having a place to go to find an understanding person to listen and help you seek solutions is important.

The ‘Voices From The Spectrum’ Trust aims to provide a local peer support network for our Waikato people. There are also things we can do to help support our wider autistic community – like sharing information on what other groups and services are around and are doing – where to find things, linking people together, or simple things like providing opportunities for parents of newly diagnosed children to talk to autistic adults about some of their concerns. We have a role to play in our community but we are also aware of our boundaries and that we are very much a part of the wider network of groups and organisations that are for autistic people and their families. As we say…”all these people matter to us too – they are part of our extended tribe”.

• Barbara Choat is from Hamilton
• More information
• This article first appeared in Altogether Autism Journal Issue 3, 2018.