UK’s black children ‘face cultural barriers’ in accessing help for autism and ADHD

Cultural barriers are preventing black children who are autistic or have attention deficit hyperactivity disorder (ADHD) from accessing the help they need, the founder of a UK campaign for better support has said.

Hundreds of children with special educational needs (Send) routinely wait for more than a year to get help as local authorities across England struggle to meet unprecedented need in a dire financial climate.

A Guardian investigation last month found more than 20,000 children were waiting longer than the mandated 20-week limit to be issued with an education, health and care plan (EHCP) that details the support they require.

Black children face even greater barriers, said Marsha Martin, a former behavioural therapist who has three neurodivergent children and is autistic herself. She founded Black SEN Mamas to try to raise awareness of autism and ADHD in the black community.

“There’s a lot of stigma perpetuated within the black community regarding neurodiversity. So we’re not openly discussing autism, ADHD and other developmental issues,” she said.

The education secretary, Gillian Keegan, said on Tuesday that special educational needs provision in England was in the grip of a crisis as she promoted plans to deliver 60,000 more places to meet the needs of pupils and their families.

Department for Education (DfE) data from 2023 shows black Caribbean pupils are the second most likely to have an EHCP (5.8%), with only Irish Traveller children more likely (6.1%). Among black African children, 4.8% have an EHCP, while 4.5% of white British children have one. The percentage of black Caribbean pupils receiving Send support without plans is more than triple those on EHCPs (17%).

Martin said black parents could misunderstand their children’s behaviour as being disrespectful rather than a result of neurodiversity. A sensory processing issue could cause a child to be confrontational but “culturally, the expectation is to put punitive measures” in place to address those things, rather than look for help and understand that unmet need, she said.

Martin’s organisation has provided support to more than 2,000 families from London to Birmingham, with online sessions that help parents navigate systems to get help for their children.

She says the women she helps have had very similar experiences to her own and have come up against systemic racism as well as cultural barriers in their own communities. “I think a lot of us in Black SEN Mamas have a very similar story. And it really has a lot to do with the lack of support from the local authorities, from the school and the education system. My own personal experience is reflective of that, in that I have three children who all are neurodiverse.”

Martin says her advocacy on behalf of her children has often been misunderstood as aggressive. “There’s so many layers of this when we look at the intersection of race, and neurodiversity, because I can’t just advocate for my child with the same volume as another non-black parent because they will be given a level of empathy that I won’t be given,” she said.

Last month a report published by the NGO Global Black Maternal Health in partnership with Black SEN Mamas looked at the experiences of parents and professionals in accessing Send provision for black and mixed black heritage children. It called for there to be recognition of the link between poor Send provision with poverty, race and ethnicity and its role in exacerbating poor educational outcomes.

It recommended culturally appropriate mental health support for Send parents and children requiring additional support. It also said professionals working with Send children should undergo training in cultural competency so they could better help children from minority backgrounds.

Martin added: “Parents of children with Send should have a say in how teachers are trained. When a child doesn’t have their needs met with the correct intervention, that has disastrous outcomes, not only for their mental and emotional development but also for their education, and then you see that they can end up in the wrong kinds of spaces … The school to prison pipeline is littered with children or adults who had unmet needs.”