Autism Acceptance Month

Apr 30

As Autism Awareness Month draws to an end, we reflect on the prevalence, stigma, and support for individuals with autism spectrum disorder (ASD) within our communities.

ASD is a neurodevelopmental disorder characterised by difficulties in social communication and interactions, as well as restricted and repetitive patterns of behaviour, interests, and activities. These challenges typically manifest in early childhood and can significantly impact various aspects of life, including social relationships and work life. Research suggests that 1-3% of the UK population could meet the diagnostic criteria for autism. However, there are disparities in diagnosis rates, with girls receiving diagnoses less frequently than boys, and individuals from Black, Asian, and other minoritised ethnicities facing barriers to accessing support.

Within Black communities, research on autism is limited, and existing misconceptions worsen the challenges. Ideas of 'shame and blame' are prevalent, leading to difficulties in seeking support from society. This lack of understanding and stigma contributes to social isolation, often preventing families from accessing the assistance they need. With views of disabilities being ‘unnatural’, ‘punishments’ and something that needs to be ‘cured’ being widespread in many pockets in our communities, families with autistic people are faced with increased difficulties when trying to seek support from society.

To address these issues within our communities, we must first dispel incorrect beliefs about autism:

Autism is not caused by vaccines. There is no link between vaccines and autism, and infants who receive vaccines are not at increased risk of autism.

Autistic children are not a 'punishment' for parents. Each child is unique, and autism is a part of their individuality.

Autism cannot be eradicated. It is a spectrum disorder meaning people will prevent in different ways. Some individuals may be non-verbal (but not non-thinking!) whilst others may be able to socialise in very specific ways. Autism cannot be 'cured' yet individuals can develop coping mechanisms and receive support to lead fulfilling lives.

Autistic children are not misbehaving. Some autistic people struggle with understanding social rules and norms making it difficult to understand how best to talk to others around them. The need for strict routine, difficulties with change and preference for certain things over others might be taken as a child being badly behaved or an adult being rude. As neurotypical individuals, the question should always be ‘how can I help or understand better?’ rather than ‘why is this person rude?’.

Secondly, systemic issues contribute to the disparities in accessing support, particularly for individuals from minoritised ethnicities. Cultural awareness among service providers is lacking, leading to feelings of judgement and barriers to care. Black mothers, in particular, bear the burden of navigating complex healthcare and social systems to support their children with autism.

Organisations like Black SEN Mamas provide valuable support and advocacy for mothers of children with special education needs. Content creators on platforms like TikTok, such as @Tinukeawe and @Aqotas, share their experiences to raise awareness and support helping others to not feel alone in their experiences.

It is essential to recognise that autistic children become autistic adults, emphasising the importance of early and continuous support. Changing attitudes within our communities and addressing systemic barriers are crucial steps towards ensuring that all individuals, regardless of ethnicity or background, receive the support they need.

We can create more inclusive and supportive communities for individuals with autism and their families. Fostering a sense of togetherness and continuing to be inquisitive can only benefit us. With this greater understanding, we can continue to support and be there for autistic individuals and their families.

Support for people, carers and their families can be found here:

Black SEN Mamas: https://blacksenmamas.com/about/

NHS: https://www.nhs.uk/conditions/autism/support/

Local support: https://www.autism.org.uk/autism-services-directory

References

Autism and Vaccines: https://www.cdc.gov/vaccinesafety/concerns/autism.html

Black Child SEND : https://www.blackchildsend.com/_files/ugd/6e0914_096b4feb22b84593bf7db08f3c23ef26.pdf

Rates of Autism in UK:

https://www.openaccessgovernment.org/rate-of-autism-in-uk/107570/

BAME Communities and Autism:

https://autismvoice.org.uk/wp-content/uploads/2018/03/AUTISM-IN-THE-BAME-COMMUNITY-UK-ISSUE-PAPER.pdf

Autism Diagnostic Criteria: