Baroness Uddin leads a project about how autism and developmental disability are affected by race and ethnicity. She campaigns in the community and the House of Lords for disability rights, women's rights and social justice. Born in Bangladesh, she has lived in Britain since 1972 and has a grown-up autistic son.
Eleven-year-old Jonathan Sane hated going to school. Most mornings there was a hullaballoo. He refused, he kicked, he screamed. His harried mother, with seven other children, begged and beseeched, but Jonathan was old enough and strong enough to stand his ground. Often she was left with no choice but to leave him at home while she dropped off the others.
Ms Sane asked the school for help. She knew something was wrong. The school told her that Jonathan's behaviour outside school was her responsibility, and that she must ensure he attend lessons. Ms Sane made three formal requests for an expert opinion. Concerned about his truancy and presuming parental neglect, the school sent social services to check on the children's welfare.
At her wits’ end, the desperate mother found a paediatrician who referred her son to a psychologist. He was swiftly diagnosed with autism. The episodes before school were "meltdowns", a common characteristic. Jonathan received a Special Educational Needs Statement qualifying him for extra support at school. But by now he was thirteen, a long-term victim of bullying and averse to school ever after.
"By that time, he was no longer the same child," Ms Sane told me.
Stigma and stereotype - black and minority ethnic experiences of autism
Would this family's experience have been the same if the Sanes were white and middle class? Or are the sons of black mothers expected to be unruly, without due consideration of an underlying condition?
A number of the families I've met, from Somalia to Pakistan by way of Croydon and Tower Hamlets, believe racism and discrimination may have affected their children's experience of autism and, consequently, access to appropriate services. Many parents also struggle when friends and relations don't recognise the concept of autism and blame them for poor discipline. In parts of Africa and Asia, in particular, there is no word for autism, so first or second generation migrants to the UK may never have heard of it.
Others parents, like Ms Sane, suspect that racial stereotypes slow down diagnosis. Her son's school only saw a black boy being disruptive in class and a single mother failing to control her large family. Such stereotypes can blind teachers and health practitioners to the underlying cause.
An inequality commonly recognised but poorly understood
Delayed diagnosis results in delayed support – heart-breaking for parents who know something's wrong and want the best for their child. The Government's recent autism strategy identified "significant under-diagnosis" of autism within families from black, Asian and minority ethnic backgrounds. Without diagnosis, these children will not be able to get a Special Educational Needs Statement, and therefore will miss out on speech therapy and other forms of statutory support.
Race and class can also be a significant factor in determining whether an autistic child will be able to lead an independent life. Researchers at Columbia University studied the progress made by autistic children to identify how many started off severely affected by autism and became "high-functioning" for their age. While most children stayed in the same group, those who made rapid progress to become high-functioning were likely to have white, educated mothers.
No one fully understands the extent of racial inequality and its impact for people with autism and their families. It may be attributable to environmental, socio-economic or genetic factors. But the American evidence points to a social justice problem. While struggling to be heard, parents are reluctant to draw attention to any discrimination they may be experiencing. More work is clearly required to hear these voices and understand the problem in Britain.
Britain's five largest minority groups are expected to expand from 14% to 30% of the population by 2050. Professionals will need to improve and adjust their responses and get better at recognising autism among all our children. There is a serious shortage of bilingual speech therapists, who need to be involved early on in families where English isn't the first language, rather than assuming a child’s background explains slower language development.
I believe that both Government and non-governmental organisations must work as a collective force for all our communities, not only to increase awareness about autism but also to take every possible step to eradicate the discrimination affecting our communities.
Written by Baroness Uddin. The names in this article have been changed to protect the subjects’ anonymity.