Blog: ABH – Autistic, Black and Hypermobile

ABH: Autistic, Black and Hypermobile

In this Autism Central blog, we are featuring lived experience experts who share their insights and personal perspectives. In this post, Olatunde Spence, regional stakeholder peer guide for Autism Central, talks about her experience of being an autistic Black woman with hypermobility.

by Olatunde Spence

ABH. Three letters that usually mean violence (Actual Bodily Harm). For me, they mean identity: Autistic, Black and Hypermobile. 

In the UK we are witnessing the rise of far‑right politics and the hostility towards minoritised groups and communities is becoming louder and bolder. We are seeing increased reporting of racism toward NHS staff, organised protests to intimidate communities seeking refuge, and Equality and Diversity initiatives being undermined. As a Black, autistic woman witnessing the rising hostility, these frightening realities and my identities collide in ways that bruise the body and exhaust the spirit. 

My name is Olatunde. I’m an art psychotherapist, a parent and activist. I currently work as an associate with Autism Central.  

This blog is about living inside a body that is autistic, Black, and hypermobile, in a world that wasn’t built with any of those realities in mind. 

Diagnosis by chance, understanding by survival 

Between the ages of 46 and 56, I was diagnosed with Myalgic Encephalitis (ME), assessed for autism, and diagnosed with Ehlers‑Danlos Syndrome. A decade of answers that arrived late, but at least they arrived.  

ME/CFS brings extreme tiredness, sleep problems, brain fog, and post‑exertional malaise – symptoms that can take weeks to recover from. Hypermobile Ehlers-Danlos Syndrome (hEDS) brings joint instability, chronic pain, and a body that doesn’t quite stay where it’s meant to. 

My hypermobility was diagnosed almost accidentally. hEDS is a common genetic connective tissue disorder that causes loose, unstable joints, flexible skin, and chronic pain. It is the most common subtype of Ehlers-Danlos syndromes, making up about 90% of all cases. 

The clinician who suggested the assessment said something that stayed with me: 

“Your journey of trying to find a cause for the pain and fatigue that you experience is typical for women who have suffered for years with no known cause.” 

Both conditions are poorly understood. Both have been mishandled by professionals. And both collide in ways that make daily life a negotiation with my own body. 

How this feels in my body 

There are moments when simply standing up or sitting upright becomes a negotiation with my body. My joints don’t hold me in place the way other people’s do. I slump, lean, twist, or brace myself against whatever is nearby – not because I’m relaxed or disengaged, but because I’m trying to find the one position that doesn’t send pain shooting through my shoulders, collarbone, chest or spine. 

I recently learned the term “coat hanger pain”, and it finally gave me language for a sensation I’ve carried for years – a band of strain and pressure across my shoulders and collarbone that isn’t in one specific spot, but radiates like I’m wearing a heavy coat on a thin hanger. 

Learning the language of hypermobility helps to define the experience. Before I found the words, I might say, “My joints feel slightly out of place,” and people would ask if I had dislocated something. What I was trying to describe were subluxations – joints slipping just enough to cause pain and instability, but not enough to be visibly “out.” 

Layered on top of all of this is autism; my body signals are often felt intensely. I experience physical discomfort, pain signals from my joints and tendons feel magnified, every ligament stretched, every joint shifting, every time it feels like an internal alarm bell is triggered. This constant monitoring of my body is exhausting. 

The Intersection of being black, autistic and disabled 

Being Black shapes how my autism and disabilities are perceived. It shapes the risks, the misunderstandings, and the consequences. An example of how this can be experienced by children facing discrimination at school. Myself and my children all have flat feet, this is a very common feature of Ehlers-Danlos Syndrome (EDS) caused by weakened connective tissues and ligament laxity that allow the arches to collapse under body weight can also cause significant pain, especially across a long school day. Your child may need to wear trainers as a reasonable adjustment to properly support their feet and reduce strain on their joints. Too many times, my children were sanctioned for wearing trainers at school even when they had a medical need and GP letter. 

For those supporting Black autistic children and young people, I would want them to reflect on: 

• How racism and ableism combine to make their child’s distress more likely to be dismissed or punished. 

• How stereotypes about Black behaviour can mask genuine pain, sensory overload or fatigue. 

• How important it is to validate their child’s experience, even when professionals don’t. 

• How advocacy becomes a form of protection, not conflict. 

ABH: Actual Bodily Harm 

I wanted to share this experience; I am sure it will resonate with anyone living with chronic health conditions trying to navigate a world that doesn’t get it. Trying to survive as a Black, older, autistic, disabled woman in this moment – in this political climate, in this hostile atmosphere – is causing ACTUAL BODILY HARM. 

Not metaphorically. Not symbolically. Literally. 

The harm lands in my joints, my muscles, my nervous system, my energy levels, my sense of safety, my ability to move through public space. 

ABH isn’t just the title. It’s the reality of being Autistic, Black and Hypermobile. 

If you’re reading this as a parent/carer of a child with hypermobility, here are some tips of what helps from my experience .

How families can support children with hypermobility .

Families often see the behaviour but not the cause. This is the case for adults and children. What looks like reluctance, withdrawal, irritability, or “not joining in” may actually be:  

• Pain that the person can’t easily describe 

• Fatigue that arrives suddenly and wipes out all energy 

• Sensory overload from noise, light, smell or movement 

• Joint instability making standing, walking or sitting painful 

• A body that is working twice as hard to do what others find simple 

In the case of children and young people, families might also notice them constantly shifting in their seat, leaning forward, slumping, or propping themselves up on their arms.  

These aren’t “bad habits.” They are pain management strategies. A child with hypermobility or subluxations (see below) may be trying to stabilise joints that feel loose, strained or “not quite in place,” even if they don’t have the words to explain it.  

Being told to “sit up straight” doesn’t help – it hurts. It forces the body into a position it cannot sustain. What looks like defiance is often a child trying to protect themselves from pain they cannot name. 

What has helped me 

There are things people have done that genuinely made my life easier: 

• Believing me when I say I’m in pain or exhausted – without questioning or minimising it. 

• Allowing plans to change without guilt or pressure. 

• Providing recovery time after activity, even if the activity looked “small”. 

• Not expecting me to push through fatigue, because pushing through often leads to weeks of consequences. 

• Letting me choose the environment – lighting, noise, seating – so my body isn’t fighting the space. 

• Understanding that accessibility isn’t a preference, it’s survival. 

These small acts of trust and flexibility have protected my health more than any medical advice. 

Questions to ask when an autistic person is struggling 

Here are some gentle questions families can use to build empathy and perspective:  

• Could this behaviour be a response to pain, fatigue, or sensory overload? 

• Has this person already used a lot of energy today, even if it didn’t look like it? 

• What might their body be experiencing that I cannot see? 

• Am I interpreting their behaviour through assumptions rather than curiosity? 

• What small change – environment, timing, expectations – could reduce pressure right now? 

• How can I show belief, flexibility and safety in this moment? 

These questions won’t fix everything, but they can shift the whole atmosphere of a family – from frustration to understanding, from pressure to care. 

If you are interested in finding out more about autism and hypermobility, listen to our podcast episode on The bendy brain and body: Autism, pain, POTS and hypermobility

About Olatunde

Olatunde is an autistic Black woman of African-Caribbean heritage. She was diagnosed with autism following assessments of her children. Her journey began as she sought to better understand her daughter’s sensory sensitivities—particularly to noise, smell, touch, and light—and her son’s challenges navigating secondary school. Olatunde is a qualified art psychotherapist and EMDR practitioner, with over 10 years’ experience working across community settings, schools, and private practice. She has delivered training as part of the National Autism Trainer Programme, led by the Anna Freud Centre in partnership with the Autism Training Academy, supporting NHS mental health professionals. She has extensive experience working with autistic children and adults and specialises in supporting marginalised communities. Her work is rooted in culturally sensitive, trauma-informed, and accessible therapeutic approaches. Olatunde has contributed a chapter to The Neurodiversity Reader (Pavilion Publishing) and authored the article “Working with Racialised Trauma” for the EMDR Association UK’s ETQ magazine.