Dealing with an unknown diagnosis

There is no word in the Somali language for autism. 

So when Nura Aabe’s son Zak was diagnosed with the complex neurological disorder at the age of two and a half, she was at a loss to explain the diagnosis to her community.

It was very difficult for Nura to access mainstream services due to the nature of the diagnosis, but also culture barriers and lack of education around autism.

Nura’s family and friends simply did not believe at the time there was such thing as autism and promised her that one day all will be okay – not realising that autism is a lifelong disability.

Autism inhibits a person’s ability to communicate and develop the social relationships and is often accompanied by behavioural challenges.

“The diagnosis was a mystery to me as there was no such thing in Somalia,” says Nura, who moved to the UK at the age of eight.

“Therefore I was shocked and frustrated about not understanding what it was and how to treat it.”

As a result of not being able to access mainstream services due to the nature of the diagnosis combined with culture barriers and lack of education around autism, Nura set up Autism Independence, an organisation aiming to empower and educate those affected by autism and those who hold little or no knowledge about the condition. 

Autism Independence brings together different communities, parents and professionals raising awareness and working closely with migrant communities who happen to have higher incidents of autism. It creates an environment where parents network, socialise and support each other.

The organisation also works very closely with ACTA, Bristol University and the National Autistic Society.

After completing a social entrepreneurial course, mother-of-five Nura was determined to broaden and expand her work within Bristol’s Somali community and it was then that she launched parenting classes for families.

“A successful society starts with a strong family base as family is the foundation of the progress and development of each individual, so we aim to strengthen families through the parenting courses we run.”

Nura is hoping to run as a councillor in next year’s local elections.

“My decision to become a politician stemmed from my journey of helping Zak to have a voice combined with noticing the absence of the representation of ethnic minorities especially the Somali community in leadership roles of society such as politics. 

“It was then that I realised that I can also contribute to local decision making as well as helping those who are underrepresented in so many ways.  This has driven me to stand for as a Liberal Democrat councillor as I value the importance of diversity and integration within important institutions and services. 

“It would be great to see Bristol’s political space such as city hall reflecting our diverse and vibrant city. Valuing the importance of integration among different communities in order to see change in society is key and in order to see change you start with yourself.

“It is essential to alter the negative outlook and labeling of ethnic minorities towards their contribution in society and I believe the way to accomplish this is through the educated educating the uneducated.”

Not content with empowering her own community, Nura will soon be embarking on a masters degree in psychology in education at Bristol University.

She continues to excel in her work, reaching out to ethnic minorities and young people by highlighting the importance of having role models and she has influenced many young Muslim women through her ability to balance western values and Muslim customs and traditions. 

“We need to be able to embrace our identity because it’s crucial to never alter yourself, your values or your identity due to fear of not fitting in with society’s norms.”

For more information, visit www.autism-independence.org.