Hypermobility, EDS & Neurodivergence
If your child is flexible, in pain, tired all the time, and you keep being told it's nothing, you're not imagining it. Here's what's actually going on, and how our Therapy Assistant hypermobility stream can help.
What is joint hypermobility / EDS?
Hypermobile EDS (hEDS)
A genetic connective tissue condition where joints move beyond a typical range. Often comes with pain, joint instability, fatigue, and frequent subluxations (partial dislocations), most commonly in the shoulders, knees, hips, and fingers. It's the most common EDS subtype by a wide margin.
Hypermobility Spectrum Disorder (HSD)
Sits on the same spectrum as hEDS, describing hypermobility-related symptoms that don't meet the full diagnostic criteria for hEDS. The day-to-day impact and support needs can look very similar either way.
The link with autism and ADHD
Research has found joint hypermobility occurs at notably higher rates among autistic children than in the general population, alongside higher rates of chronic pain and dysautonomia symptoms like dizziness on standing.
Studies have repeatedly linked ADHD with elevated rates of joint hypermobility and connective tissue differences, more consistently than would be expected by chance.
Autistic and ADHD kids are turning up with hypermobility and pain at far higher rates than their peers, and it's historically been missed because health providers have treated "body" and "brain" as separate categories.
Why it so often gets written off as "growing pains"
The two get blurred together constantly, but they don't actually behave the same way.
Genuine growing pains
- Come and go, not constant
- Not clearly linked to activity
- Mostly affect kids under 12
Hypermobility-related pain
- More persistent, sticks around
- Tracks closely with exertion
- Can continue well past age 12
It's part of why an EDS diagnosis so often takes years, commonly close to a decade or more, with early symptoms written off along the way as clumsiness, growing pains, or an overactive imagination.
What this can look like day to day
Avoiding or struggling with sport/PE, not from disinterest but fatigue and pain
Falling or tripping more than peers, often labelled "clumsy"
Leg or joint pain, especially at night
Joints that "pop out" or feel unstable
Handwriting fatigue or hand pain
Getting exhausted faster than peers doing the same activity
How our TA hypermobility stream helps
Start with a hypermobility-aware physio
The best first step is an assessment with a physio who actually knows what they're looking for. They can tell you whether your kiddo is genuinely hypermobile, not just flexible, and whether it's contributing to the pain or fatigue you're seeing.
The physio we work with has specialist hEDS knowledge and can advise whether further testing or referral is worth pursuing, rather than guessing.
Then, ongoing TA support
The supervising physio designs the plan, then our therapy assistants deliver fun, game-based sessions that build strength, proprioception, and joint awareness, without overloading unstable joints. Same TA model as our broader program, built specifically around hypermobile bodies.
How this connects to the wider picture
Hypermobility rarely travels alone. If you're an adult piecing together your own puzzle (or supporting a kid through theirs), these tend to show up in the same cluster.
POTS
Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia where standing up triggers a rapid heart rate, dizziness, or fatigue. Commonly co-occurs with hEDS.
MCAS
Mast Cell Activation Syndrome, where the immune system's mast cells overreact, causing allergic-type symptoms like flushing, hives, or GI issues. Often shows up alongside hEDS and POTS.
Pelvic Pain
Connective tissue laxity can affect pelvic floor stability too, not just the joints people usually think of. Often under-discussed, and often dismissed.
Medical Trauma
Years of being dismissed, disbelieved, or told it's "all in your head" leaves a mark. That history is real, and it shapes how safe healthcare feels going forward.
We take medical trauma seriously
If you've spent years being dismissed, over-tested, or made to feel like a difficult patient, we're not going to add to that pile. We believe you, we go at your pace, and we won't ask you to re-prove your pain to be taken seriously here.
This is personal for us
Both of us live with hEDS. This isn't a program we built from research alone, it's built from having actually been those kids.
We were the ones getting in trouble for not being able to write for long because our hands hurt. The ones sitting out of PE and getting called lazy for it. We know what it's like to be in real pain and have it waved off as clumsiness or an excuse. That's exactly why this stream exists.
Common Questions
The questions parents actually ask us, in the words they actually use.
Working out what's going onGrowing pains at night, or something else?
Genuine growing pains are usually intermittent and mostly affect kids under 12, without a clear link to activity. If the pain is persistent, tracks closely with exercise or activity, or comes with joints that feel unstable or "pop," it's worth looking beyond growing pains toward joint hypermobility.
Why does my child's joints crack and hurt?
Cracking joints alone are common and usually harmless. Cracking combined with pain, swelling, or a feeling of instability is more worth investigating, particularly if it's frequent or affects daily activities.
Why is my child so flexible and in pain?
Extra flexibility paired with pain is a combination worth taking seriously rather than dismissing as double-jointedness. It's one of the more common early signs of joint hypermobility or hEDS.
My child seems clumsy and hypermobile, are these related?
Often, yes. Joint instability from hypermobility can genuinely affect balance and coordination, leading to more trips, falls, and bumps than other kids the same age.
My child's joints dislocate or "pop out" often, is that normal?
No, frequent subluxations (partial dislocations) are not typical and are a common feature of joint hypermobility and hEDS, particularly in the shoulders, knees, hips, and fingers.
What are the signs of EDS in toddlers and young children?
Signs can include unusually flexible joints, frequent falls, delayed motor milestones, complaints of pain during or after activity, and joints that feel unstable or dislocate easily.
Is hypermobility linked to autism?
Research increasingly points to a genuine link. Studies have found joint hypermobility occurs at notably higher rates among autistic children than in the general population.
Is there a connection between ADHD and hypermobility?
Yes, research has repeatedly found elevated rates of joint hypermobility among children with ADHD compared to their peers.
Why are autistic kids often double-jointed?
It's not fully understood yet, but researchers believe shared connective tissue and nervous system differences may explain why hypermobility shows up more often alongside autism.
Is hypermobility connected to sensory issues?
There's crossover, since joint instability affects proprioception (your sense of where your body is in space), which is closely tied to sensory processing more broadly.
Why does my child avoid sport or get so tired at school?
For hypermobile kids, sport and a full school day can be genuinely more physically taxing, joints working harder to stay stable means more fatigue for the same activity level as their peers.
How is hEDS diagnosed in children?
Diagnosis typically involves a clinical assessment against specific criteria, often by a geneticist, rheumatologist, or specialist physiotherapist. It commonly takes years to reach a diagnosis, so if you're only at the start of that process, you're not behind, that timeline is unfortunately common.
What's the difference between Hypermobility Spectrum Disorder and EDS?
They sit on the same spectrum. HSD describes hypermobility-related symptoms that don't meet the full diagnostic criteria for hEDS, but the day-to-day impact and support needs can look very similar.
Does the NDIS cover hypermobility or EDS support?
It can, depending on your child's individual plan and functional impact, not the diagnosis label alone. If you're unsure what your plan covers, we're happy to help you work it out, contact us.
What does physio for a hypermobile child actually involve?
Typically strength and stability work around the affected joints, proprioception training, and pacing strategies, built around what the individual child's body can handle, not a generic program.