by Jane Green MBE, Founder & Chair of SEDSConnective
Traditionally, 2nd April has been known as Autism Awareness Day with jigsaw piece symbols and the colour blue.
Over the years the autistic community have said they do not believe in autism awareness as it’s a passive notion. You can be aware of anything and but it does not have meaning. So, Autistic people want acceptance because it means accepting autism as a natural part of the human experience (this is the neurodiversity paradigm). People are different. Everyone can be aware, but this doesn’t lead to acceptance in school, in employment and in the community.
Need for Awareness in Co-occurring Conditions: While acceptance is crucial, there is also a need for awareness of co-occurring conditions with other neurodivergent health issues like symptomatic hypermobility or if diagnosed (Ehlers-Danlos syndromes (EDS) or hypermobility Spectrum Disorders (HSD) (pgJH) with people often having previous diagnoses of fibromyalgia, IBS, chronic fatigue, long Covid) and acceptance that these coexist.
Prevalence of autism/and cooccurring health diagnosis: While the prevalence of diagnosis has increased particularly for girls, women, AFAB, the research connecting autism to EDS or HSD is also increasing. However, the acceptance of body mind autistic (neurodivergent) connections are still many years behind. This might be due to silo understanding, brain body dualism, protective narratives due to career profession, gender male diagnostic historical bias research and stereotypical diagnostic assessment bias.
The traditional approach of Autism Awareness Day, marked by symbols like the jigsaw piece and the color blue, has been criticised by the autistic community as passive and lacking in meaningful action. Simply being aware of autism does not lead to acceptance or understanding of the lived experiences of autistic individuals.
Advocacy for Acceptance: Acceptance of autism as a natural part of the human experience is essential for combating loneliness, isolation, and discrimination faced by autistic individuals in various aspects of life, including health, education, employment/careers, care, social mobility and community inclusion.
Advocacy for Autistic Health Differences: SEDSConnective advocates for acceptance of autistic health differences, which can significantly impact life chances, education, employment, financial contributions to society, and social mobility. There is a need for recognition and understanding of these differences, including those related to connective tissues. This broader awareness contributes to understanding neurodivergence as a whole and addresses the unique challenges faced by individuals with multiple diagnoses and then acceptance that these co-occur.
Symbolism of the Infinity Symbol and Gold Color: The infinity symbol represents the diverse spectrum of neurodivergence and the potential for endless possibilities. Gold is chosen as a colour to symbolise value and worth, qualities often overlooked in autistic individuals by dominant narratives. The infinity symbol is also multicoloured to include other neurodivergence.
Origin of Autism Acceptance Day: Autism Acceptance was first organised by Paula Durbin Westby, in 2011, as a response to traditional ‘Autism Awareness’ campaigns which the Autistic community found distasteful and unhelpful. These campaigns were often about raising money for organisations rather than educating and many were not led by autistic voices. SEDSConnective agree with this but also add that awareness is needed in autism co-occurring conditions and diagnoses such as ADHD, dyspraxia, TS, dyslexia (so neurodivergence) and co-occurring health issues such as symptomatic hypermobility (EDS HSD pgJH).
Future Focus: The focus shifted towards education and empowerment led by autistic individuals themselves and now as a user led charity we are pioneering and calling for acceptance of the neurodivergent difference of autistic body health issues as equal partners with the mind. Mind/Bodyembodied neurodivergence matters.
This has been the basis of my blog for many years and published in parts nationally by other charities and large organisations in educational psychology (EdpsyUK), in social care (SCIE) and carers charities (CSWS) as well as autistic ones.