Suzy Rowland, author of S.E.N.D. in the Clowns: Essential ADHD/Autism Family Guide, explains the crucial need for research into Black autism and ADHD
Originally published https://www.openaccessgovernment.org/black-autism/91621/
In conversation with my counselling supervisor, I mentioned that my son was diagnosed with autism spectrum condition (ASD) aged almost nine. I prefer to use the word condition, instead of disorder, to discourage perpetuation of autism spectrum in the medical model. “What took you so long to get a diagnosis?” she enquired. “That’s a good question,” was my diplomatic response.
Autism and black mental health
A quick search on NHS Digital for ‘black autism’ takes the browser to the Mental Health Act 2019, where on the second page in key findings we are shown that ‘amongst the five broad ethnic groups, known rates of detention for the Black or Black British group (306.8 detentions per 100,000 population) were over four times those of the White group (72.9 per 100,000 population).
Straight away, we see a digital straight line between Black autistics and mental health detainment.
The National Autistic Society affirms that ‘mental illness can be more common for people on the autism spectrum than in the general population, even so, the mental health of autistic people is often overlooked.’ How many of these Black people, detained under the Mental Health Act, have undiagnosed autism or ADHD as a key presenting need, creating a mental health condition that has contributed to their detainment? NHS Digital subsequently confirmed that currently there are no published statistics on autism diagnoses by ethnicity.
What is also interesting is that amongst broad ethnic groups, known rates of community treatment order use (where patients with mental illness can leave hospital to be treated safely in the community) for the Black or Black British group (53.8 uses per 100,000 population) were over eight times the rate for the White group (6.4 uses per 100,000 population). The next highest for those with Any Other Black Background, at 728.1 detentions per 100,000 people, stands at ten times the rate for the White British group (70.1 detentions per 100,000 people) in 2018-19.
Access to mental health services?
These statistics are more confounding when we consider that the established narrative is that Black people are reluctant to engage in mental health services; but the figures do indicate that when black people come to the attention of social, mental health or policing services – they are already at a crisis point. If I had not been of stable mind, educated and determined for my son to receive a good education by staying within the school system, he could so easily have become one of these dreadful mental health statistics.
Rowland, in her upcoming book, further commented:
“Exclusions were the soundtrack to Lucas’s primary education. The many years of exclusions before he was diagnosed with ASD and ADHD created a child who was on edge, defensive and sometimes explosive in pressurised situations. He described the feeling before a meltdown as a volcano, which he couldn’t always control. By the time he got to secondary school his generalised anxiety led to a range of mental health difficulties including anxiety, sleep disturbance, reduced appetite and depression.
“In the year or so before he was diagnosed, he was withdrawn, he rarely laughed or smiled. He was consumed with his ‘failure’, which was dimming the light of his lovely personality.”
I believe the range of factors that contribute to these dismal mental health statistics are, at their core, the same factors that lead to misdiagnoses of autism and ADHD amongst Black people in the UK. Leading UK charities have done an excellent job of raising wider awareness of autism in society. A US primary care clinician said: “The primary candidate for an autism diagnosis and services is a seven-year-old White boy. Even a seven-year-old White girl won’t get the same level of diagnosis or intervention.”
The acknowledgement and acceptance that Black (including Black mixed) communities also experience autism and ADHD is less well known, which leads to serious societal imbalances. Even looking at maternity services, we see that Black women are more likely to die from complications around pregnancy and birth (UK Confidential Enquiry into Maternal Deaths). These disparities continue into post-natal services, pre-school environments and into primary school and beyond.
Development issues viewed as socio-economic issues
The presentation of early developmental issues in Black children are often mistakenly viewed as social or economic in origin, which they may also be, but viewing health or behavioural concerns through a narrow prism of social class and disadvantage can blind experts to a range of genuine medical or emotional needs. Psychologists are in almost total agreement that child behaviours are nearly always functional in origin. Failure to apply due process of investigation of the causes of that behaviour, including childhood trauma, by medical, health and educational practitioners, can lead to significant and serious future mental health impairment.
It goes to the heart of the medical and educational establishment in terms of training and case studies; how are these professionals expected to understand how conditions present in other cultures if their professors and training materials are mono-cultural? The result is a well-trained cohort of medical, health and educational professionals who are at best ignorant at identifying and supporting patients and students from the black neurodiverse subset:
“Her (the psychiatrist’s) view was that Lucas’s behaviour was a reaction to having been bullied at his first primary school. She believed—because of his relative immaturity—that he was unable to communicate how he was feeling, her opinion was that he didn’t have ADHD. She wrote a follow-up letter to the SENCO saying she didn’t think Lucas had ADHD and that he would be discharged from the CAMHS service.”
Impact of public service engagement with Black autism
The needs of a disabled person will be evident to a range of public service providers, in particular education, health and social care and in some cases the criminal justice system. It’s paramount these systems and the personnel within them interact without prejudice with disabled people – whether the disability is physical or indeed ‘hidden.’ In reality, some of these interactions are so heavy with subconscious bias and ignorance they can be harmful. We only have to look at the significant issues of maltreatment of autistic people in assessment and treatment units (ATUs).
Many of my friends and colleagues who are parents of autistic kids and in some cases, autistic themselves, have recounted dismal tales of being gaslighted or worse judged as being a ‘bad parent’ before their child is eventually diagnosed as autistic or ADHD. It points to a failure of medical best practice to observe that children of Black Caribbean origin in the UK and African American children in the US are routinely diagnosed with autism at an older age or misdiagnosed with depression or social, emotional and behaviour issues, which have different treatment protocols.
When we consider that children are usually diagnosed in healthcare or education settings, we can surmise that it is in these settings where cultural autism and ADHD training is urgently needed. But training without behaviour change is about as helpful as driving a car with no brakes.
Educational impact of autism
Older diagnosis means missing years of intervention and appropriate support, which results in children continuing with poor social interactions, lack of meaningful friendships and difficulties in the education system. All of this can lead to depression, anxiety and sustained mental health difficulties well into adulthood. It’s acknowledged that girls are under-diagnosed with autism, as they present so differently to boys, but what is less discussed is the rate to which Black children, in particular boys, are left behind in this diagnosis jackpot. I say jackpot advisedly, as knowing the cause of a behaviour (autism is often co-morbid with a range of conditions) is the entry point for targeted social health and education support. Rowland further wrote:
“Early intervention is the key to preventing some of the unnecessary stress for autistic children, young people and their families face. There are long wait times for appointments and inappropriate support or needs not being met.
“Early intervention for autism aimed at helping parents communicate with their child has been shown to have an effect on reducing the severity of autism symptoms, and this reduction continued for six years after the end of treatment.”
The Lancet 2016 studies
The pressures of the average primary school are significant in terms of the variety of non-educational issues teaching and support staff are faced with. The pressure to deliver curriculum results against a rising tide of child and adolescent pressures ranging from grooming to social media bullying is relentless.
Autistic and ADHD children are most at risk of social isolation and bullying as they move through the year groups because of their emotional dysfunction and difficulties with social interaction and communication. It’s an unenviable dilemma for teachers and SENCOs who are working within budget and resource boundaries and sometimes lack understanding of the child in front of them.
“Being an autism/ADHD parent is like being part of a unique club; one of the joining requirements is that your child is unlikely to have many, if any, friends. Your child’s idiosyncrasies can intimidate or confuse other children or even frighten them. It’s difficult for children and adults to break out of a negative perception cycle of teasing > temper tantrums > bad behaviour > no friends > low expectations > harsh discipline > temper tantrums > bad reputation > and on it rolls…”
Autism and camouflaging, especially in Black women
“There’s this stereotype of Black women, the assumption is we’re always strong.”
Camouflaging or masking is the term used to describe when someone hides the true extent of their autism or autism symptoms. Autistic girls are known to do this more than boys with some girls going to extreme lengths to conceal their neurodiversity. For Black autistic women, especially those who are traditionally perceived as strong matriarchs, masking can be a real issue, causing extreme stress and anxiety, particularly if the woman is fearful of disclosing her autism to an employer.
Representation is an acknowledged form of self-esteem for minority groups in a culturally diverse society; the need to be seen to prove you exist, and if you exist, you should be entitled to the same rights and benefits as everyone else in society. Access to culturally diverse diagnostic tools and professionals is a logical starting point to improve diagnosis rates and the relevant intervention that should accompany that diagnosis.
“Having a diagnosis was important for me as it proved that I wasn’t a bad mother.”
“That’s a good question”
My son’s diagnosis was a key factor in retaining my own mental health and confidence in my ability to parent successfully (if there is such a thing!) As I started to write S.E.N.D. in the Clowns which began as a collection of diary entries to help me make sense of my son’s frequent exclusions from primary school and difficulties with friendships, I discovered my own advocacy voice.
I tapped into rusty research skills and joined the dots between school exclusions, poor mental health and limited future employment prospects. After six years and a career change, I set up the #happyinschool project to empower and educate teachers and parents who are navigating neurodiversity, particularly in education. S.E.N.D. in the Clowns is a handbook for newly diagnosed families or anyone with an interest in neurodiversity and a testimony to the effectiveness of informed advocacy as a key link to break the chain of long-ingrained biases and misinterpretations of racial tropes that influence perception.
Returning to the conversation with my supervisor, I responded to her question by saying that she had raised a good question. I was careful not to give a glib response as it can close down dialogue rather than open it up. The reasons why are historic and multi-layered, so responding with the word ‘racism’ takes away from the interwoven complexity both within people who are unused to experiencing autism and ADHD (as I was then) and within health and educational professionals, who may be used to witnessing autism and ADHD behaviours, while assuming they are something else. I hope to continue that dialogue with her and other professionals, as it is only through thought, and experience, that any of us can change.
Italics are excerpts from S.E.N.D in the Clowns: Essential autism / ADHD Family Guide.