The Spectrum and the Syndrome: Autism and EDS

By Antonia @Unremarkable Me

Over the past few decades, autism has transformed from being a little-understood condition to a widely recognized neurodevelopmental spectrum. But while awareness may be on the rise, the road to adequate care and support remains riddled with bureaucratic potholes and just-keep-waiting cul-de-sacs.

From delayed diagnoses to long-overdue reforms, autistic individuals in the UK face a healthcare system that too often leaves them asking, “Where’s the support I need?”

In my own life, I’ve seen both ends of the spectrum play out. My partner, Sam, was diagnosed as an autistic adult—after years of masking, struggling silently, and being told to just “cope better.” My nephew, on the other hand, was diagnosed young. They are both autistic. They are both wildly different. And yet, the challenges they face—navigating a world not built for their needs—echo each other.

And then there’s me. I don’t have autism, but I do live with Ehlers-Danlos Syndrome (EDS)—a complex, multisystemic connective tissue disorder. The more I learned about autism, the more I saw the dangerous overlap with EDS: sensory overload, misdiagnosis, medical gaslighting, the constant need to explain yourself in rooms that won’t listen.

The intersection of EDS and autism is increasingly recognised, but still dangerously misunderstood. The result? People like Sam and so many others are left to navigate endless referrals, unsupported complexity, and a system that acts like nuance is optional.

So let’s unravel this mess—balancing truth with a bit of hope, a dash of dark humour, and just the right amount of righteous rage.

A Spectrum as Vast as the Universe (or at Least the NHS Waiting List)

The term autism spectrum captures the fact that no two autistic people are alike. One person might struggle with sensory overload in a noisy classroom, while another excels in a hyper-focused job but finds casual conversation akin to decoding ancient runes.

The spectrum includes:

• Social communication differences (think awkward small talk, but on a cosmic scale)

• Repetitive behaviours (including hobbies that evolve into full-blown academic theses)

• Sensory sensitivities (because yes, those fluorescent GP lights are like laser beams from hell)

Here’s where things get interesting: many people with hypermobile EDS (hEDS) report similar traits—sensory issues, executive dysfunction, anxiety, and social differences. And no, it’s not just coincidence.

So… Is There a Genetic Link Between EDS and Autism?

Short answer? We don’t know for sure. Longer answer? The research is leaning toward yes.

Emerging studies suggest:

• People with EDS are significantly more likely to be autistic, and vice versa.→ PMC: Neurodevelopmental and psychiatric conditions in EDS/HSD

• Sensory processing issues, fatigue, and motor coordination problems appear in both groups.→ Medical News Today – EDS and Autism: Is there a link?

• Some research suggests connective tissue gene mutations might impact brain development during pregnancy.→ PMC: Shared genetic pathways in autism and connective tissue disorders

So far, the science points toward a potential biological overlap—especially in genes involving collagen, cell adhesion, and neural connectivity. But here’s the reality: regardless of mechanism, the impact is very real. And the system is not keeping pace.

The Waiting Game

Spoiler: You’ll Wait. A Lot.

As of September 2024, over 204,000 people in England were waiting for an autism assessment. 89% had already waited longer than the NHS's recommended 13 weeks.→ National Autistic Society

In some regions, it’s downright dystopian. In Oxfordshire, adults have faced waits of up to 18 years. In Devon? 4.5 years—long enough to get a medical degree and diagnose yourself.→ The Times: Autism diagnosis delays

And for those who also live with conditions like EDS, the delays can be devastating. These are people who’ve already endured years of medical dismissal and misdiagnosis. For many, the damage has already been done.

A Mental Health Minefield: The Cost of Coping

Anxiety and depression are common in autistic people—and even more so in those with chronic conditions like EDS. It’s not hard to understand why:

• Sensory overload

• Joint instability

• Autonomic dysfunction

• Constant vigilance

• And the exhausting, soul-sapping experience of not being believed

Many autistic people mask—hiding or suppressing their natural behaviours to blend in. But masking takes energy. And when your body’s already trying to hold itself together with metaphorical duct tape, that extra strain can push you into burnout.→ Spectrum News – The Cost of Masking

Diagnostic Overshadowing

When “It’s Just Your Autism” Becomes Dangerous

Once an autism diagnosis is made, every other symptom risks being shoved under that umbrella.

• Fatigue? “That’s part of autism.”

• GI issues? “Just sensory stuff.”

• Breathlessness? “Anxiety.”

• Joint pain? “Are you sure it’s not psychosomatic?”

This is called diagnostic overshadowing, and it’s rampant.→ BMJ – Diagnostic Overshadowing in Healthcare

It’s especially dangerous for people with EDS, where symptoms are often invisible or misattributed. One label doesn’t negate others—we need a system that’s capable of seeing more than one thing at once.

Isolation by Design

If you’re autistic and chronically ill, welcome to the double exclusion club.

• Workplaces rarely accommodate minds or bodies.

• Schools penalise difference.

• Social events feel like sensory obstacle courses.

• Public transport? Built by people who have clearly never used it.

And if you’re a woman, non-binary, or a person of colour? The risk of being overlooked rises even higher.

The Relationship Factor: Walking Side by Side

Behind many people navigating this complexity is a partner—not a caregiver, but a co-survivor. Someone who walks beside them. Who gets it. Who fights, not for them, but with them.

Love in this space looks like decoding letters together, crying on waiting room benches, and clinging to dark humour when that’s all that’s left.

It’s exhausting. And it’s everything.

Final Thoughts: Complexity Isn’t the Problem—Denial of It Is

Autism and EDS don’t break people. But being told you’re “too much” to be helped? That can.

We don’t need a perfect system—we just need one that recognises reality. Where services talk to each other. Where nuance isn’t penalised. Where complexity isn’t an inconvenience—it’s assumed.

Because being dismissed for who you are hurts more than any diagnosis ever could.

Support and Resources

• National Autistic Society – Services & Info

• Ehlers-Danlos Support UK

• Autism Assessment Waiting Times Tracker – NAS

• Spectrum News – Masking and Mental Health

• BMJ – Diagnostic Overshadowing in Practice