Autism is a broad term for a range of conditions that stunt social integration and communication skills; it is usually detected in early childhood. Ethnicity poses as an important factor within diagnosis and treatment, the negative experiences black communities often face are due to; a lack of knowledge surrounding health issues, poorer health outcomes and lack of access to healthcare.
As of 2015, Autism Spectrum Disorder (ASD) affects 1 in 50 children, and there are currently 133,500 under 18s on the autism spectrum. Now although this is an alarming number, as ASD is a spectrum disorder, its effects on each individual differs greatly, however at its core, it is an impairment of imagination, social communication, and social interaction. Asperger syndrome is a form of autism due to the difficulties surrounding social interaction and processing language. However individuals with Asperger’s are usually higher on the spectrum with average or above average intelligence.
In 2013, the National Autistic Society (NAS), the UKs leading charity for people affected by autism, announced its plans to expand their knowledge of Black and ethnic minority communities experience of autism. They concluded there were a number of contributing factors that explained why Black and ethnic minority families may struggle more with an ASD diagnosis. Many of which are being spoken about in relation to Mental Health and other healthcare issues:
Difficulty in diagnosis
Lack of knowledge around autism and child development.
Cultural stigma. Shame in many communities
Not being given enough information even after diagnosis
Professionals attitudes towards families.
The Medical and Educational sectors play a vital role in dealing with an autism diagnosis; however, due to negative stereotypes and perceptions of black people, a young black person may be denied appropriate interventions and solutions. For example, despite early intervention being key for ASD, a diagnosis is often found one to two years later in black children than their white counterparts. The lack of diagnosis at such a crucial stage can be detrimental to the individual as without a diagnosis it is difficult to access any sort of healthcare.
Many schools are not equipped with the knowledge to address the signs of autism challenging behaviours can often be mistaken. Criminal perceptions and negative stereotypes of black people are also an important factor. Black students are more likely to be perceived as disruptive or unmanageable, when in fact they could have a developmental disorder - in which case punishment through isolation, detention or worse: exclusion, would cause further social withdrawal and abandonment.
The NAS report found that out of the majority of families interviewed, many struggled with identifying and accepting autism signs due to cultural and community stigma. Showing signs of autism or having an autism diagnosis can prove difficult to (re)integrate back into a community, particularly more so when religious beliefs take precedence over a social disorder diagnosis. There is an urgent need for culturally competent staff or more black health professionals. This can help black communities to feel more trusting more trusting of healthcare services and more inclined to educate themselves on the signs of autism.
Although there are no disparities in the rate of autism across racial groups, the fact that black children are diagnosed later results in longer and more intensive interventions can have a detrimental effect on social skills and interaction which are already developmentally impaired. The continued social neglect and misunderstanding of black children give further reasons for black families to distrust healthcare services.
In regards to this, the NAS proposed that a personalised service is needed when consulting black families with an ASD diagnosis as ASD is not a singular disorder; it is as complex as the individuals who have it.
The full NAS report can be found here.
You can discuss this further with the Lafiya Health team here.
Follow the author of this post on twitter: @kqueenie_