Autistic UK is an Autistic People’s Organisation (APO) – an organisation run by autistic people for autistic people. Autistic UK aims to advance the interests of all autistic people and those with related neurodevelopmental conditions. It aims to promote and protect the civil and human rights of the autistic population and campaigns for the enforcement of the legislation which guarantees our rights. It aims to increase understanding of autistic people, our differences and needs, and works to improve services, facilities, and conditions for autistic people.
It does not seek to represent autistic people, rather it aims to ensure that autistic people can represent themselves. It seeks to establish the mechanisms and processes which will empower autistic people to be able to represent themselves.
Autistic UK recognises that many autistic people are unable to represent themselves (or will experience great difficulty in doing so) and recognises the importance of ensuring effective advocacy so that these autistic voices are heard and their wishes for their lives enacted.
Autistic UK believes that carers, family members, friends, and supporters of autistic people play an important role in both our everyday lives and as allies in the fight for our rights. It welcomes these non-autistic people as network associates. Autistic UK believes in strength through unity and that there is much common ground to be found.
WHY ARE WE NEEDED?
Autism is a lifelong neurological condition, with current UK figures suggesting that autistic people make up approximately 1.1% of the population, with the CDC suggesting this figure is closer to 1.9%. Autistic people, along with their families and carers, report feeling isolated, often due to inaccessible environments and societal attitudes. Due to the growing identification of the diversity of autistic characteristics and the subsequent increase in the recognition of the prevalence of autism and other neurodevelopmental conditions, diagnosis rates are increasing each year and many people are now receiving a diagnosis in later life. There is no cure and you cannot treat autism, however, some of the common difficulties and co-occurring conditions autistic people live with can be addressed with treatment. For example, anxiety and depression. Unfortunately, these co-occurring conditions are often either ignored or they are purely seen as part of “the autism”.
For many years, autistic individuals have had to deal with fragmented and unworkable service provision, often causing individuals to “fall through the gaps” of service, being left with no support. There are very few services for autistic adults, or for those with other neurological differences, with many autistic people, and their families and carers, reporting that they are unable to find or access any useful support. Services are often set up for autistic children and their parent/carers and once a child has finished education very little support is available.
There is a severe lack of advocates who understand autism. Current opinions and attitudes lead to many misunderstandings, fuelled by stereotypes and stigma. Autism is known as a pervasive developmental disorder because it affects an individual across all domains of development and can, therefore, impact on an individual across all areas of their life, creating obstacles which can be challenging. However,with the correct understanding and support, these challenges can be lessened and, in many cases, overcome. Generic services such as debt advice, advocacy services and counselling services often have no autism training (and those which do have had minimal training delivered by people who are not autistic and, unfortunately, perpetuate harmful stereotypes which make accessing these ‘trained’ service providers more difficult for autistic patrons). All services, whether or not they have received training, are overworked and underfunded.
A lack of representation of autistic people in research and service design has led to available knowledge that is based on a narrow range of stories, often provided by outdated textbooks and/or parent/carers rather than from autistic people themselves. Too often autism is viewed through a purely medical model and the societal view of autism is one of extremes and negatives. We feel that by looking through the lens of the medical model you fail to gain that in-depth experience and greater understanding of what autistic people really need, and therefore many support services are not currently fit for purpose.
Autistic UK aim to equip autistic people with the tools to self-advocate, while also providing training and advice to education, health, and support services so they are better able to provide a service which is accessible to all autistics.