Understanding the Different Ehlers-Danlos Syndromes (EDS) and Their Connection to Autism Part 1

The EDS mascot.

Ehlers-Danlos Syndromes (EDS) are a group of heritable connective tissue disorders. They affect the collagen and extracellular matrix, which are fundamental to skin, joints, blood vessels, and internal organs. Collagen abnormalities can manifest across multiple body systems.

As of the 2017 International Classification, there are 13 recognized subtypes of EDS, each with a specific genetic cause (except for one). While not all forms are commonly associated with autism, several patterns in clinical and genetic overlap suggest emerging links between EDS—particularly hypermobile EDS (hEDS)—and autism spectrum disorder (ASD).


2. Classical EDS (cEDS)

  • Genes: COL5A1 or COL5A2 (affects type V collagen)

  • Inheritance: Autosomal dominant

  • Symptoms:

    • Severe skin hyperextensibility

    • Atrophic scars (“cigarette paper” scars)

    • Joint hypermobility (less than hEDS)

    • Easy bruising

    • Hernias

    • Muscle hypotonia

    • Delayed motor development

    • Foot deformities

    • Early-onset osteoarthritis

  • Autism Connection:

    • Some sensory-motor challenges overlap with autistic motor profiles

    • Hypotonia and delayed motor milestones may intersect with ASD-related motor delays

    • Rarely studied in autism research directly, but connective tissue fragility may complicate physical therapy for autistic individuals

1. Hypermobile EDS (hEDS)

  • Inheritance: Likely autosomal dominant; no confirmed gene yet

  • Symptoms:

    • Generalized joint hypermobility

    • Frequent joint dislocations or subluxations

    • Chronic musculoskeletal pain

    • Fatigue

    • Dysautonomia (especially POTS)

    • Gastrointestinal issues (IBS, GERD)

    • Soft or velvety skin

    • Easy bruising

    • Poor proprioception

    • Clumsiness or coordination difficulties

    • Anxiety and sensory sensitivities

    • Mast cell activation symptoms (flushing, rashes, allergic-type responses)

  • Autism Connection:

    • Most documented EDS-ASD comorbidity is seen in hEDS

    • Shared traits: sensory processing issues, proprioceptive dysfunction, anxiety, and fatigue

    • High rates of neurodivergence reported in EDS support groups and clinics

    • Likely overlap with hypermobility spectrum disorders (HSD), which may co-occur with ASD



4. Vascular EDS (vEDS)

  • Gene: COL3A1 (type III collagen)

  • Inheritance: Autosomal dominant

  • Symptoms:

    • Arterial, intestinal, or uterine rupture risk

    • Thin, translucent skin

    • Prominent veins

    • Easy bruising

    • Joint hypermobility (typically limited to small joints)

    • Characteristic facial features (thin nose, thin lips, small chin)

  • Autism Connection:

    • Minimal direct overlap

    • Because of medical fragility, autistic individuals with vEDS require extreme care during physical activity, restraint, or surgery

    • Anxiety and autonomic dysregulation may be compounded by comorbid ASD

3. Classical-like EDS (clEDS)

  • Gene: TNXB

  • Inheritance: Autosomal recessive

  • Symptoms:

    • Skin hyperextensibility without scarring

    • Joint hypermobility

    • Easy bruising

    • Muscle hypotonia

  • Autism Connection:

    • Largely unexplored in research

    • Muscle tone and joint instability may affect motor coordination in autistic individuals

    • TNXB mutations may impact extracellular matrix function relevant to neurodevelopment



6. Arthrochalasia EDS (aEDS)

  • Genes: COL1A1 or COL1A2

  • Inheritance: Autosomal dominant

  • Symptoms:

    • Congenital hip dislocation

    • Severe joint hypermobility

    • Skin hyperextensibility

    • Easy bruising

    • Hypotonia

    • Delayed gross motor milestones

    • Recurrent joint dislocations

  • Autism Connection:

    • High physical support needs may complicate early ASD identification

    • Motor delays can overlap with autistic motor planning issues

    • Physical therapy plans should be adjusted for joint instability and sensory needs

5. Kyphoscoliotic EDS (kEDS)

  • Genes: PLOD1 or FKBP14

  • Inheritance: Autosomal recessive

  • Symptoms:

    • Congenital muscle hypotonia

    • Progressive scoliosis (develops in infancy or early childhood)

    • Joint hypermobility

    • Skin fragility

    • Easy bruising

    • Abnormal scarring

    • Eye issues (e.g. scleral fragility, microcornea)

  • Autism Connection:

    • Hypotonia, coordination delays, and scoliosis also appear in subsets of autistic children

    • Sensory-motor integration difficulties may present more acutely when both conditions coexist

    • Requires multidisciplinary intervention planning



8. Musculocontractural EDS (mcEDS)

  • Genes: CHST14 or DSE

  • Inheritance: Autosomal recessive

  • Symptoms:

    • Congenital joint contractures

    • Craniofacial abnormalities

    • Hyperextensible, fragile skin

    • Recurrent dislocations

    • Clubfoot

    • Developmental delays

    • Vision and hearing problems

  • Autism Connection:

    • High prevalence of neurodevelopmental issues in some case studies

    • May be confused with autism if expressive communication and sensory integration are affected

    • Multisensory and motor planning supports recommended

7. Dermatosparaxis EDS (dEDS)

  • Gene: ADAMTS2

  • Inheritance: Autosomal recessive

  • Symptoms:

    • Extreme skin fragility

    • Sagging, soft, doughy skin

    • Bruising

    • Umbilical or inguinal hernias

    • Large fontanelles in infancy

    • Delayed motor development

  • Autism Connection:

    • Very rare; no confirmed associations yet

    • Physical vulnerabilities and motor delays could present similarly to ASD-related dyspraxia

    • Careful handling and sensory accommodations required



10. Periodontal EDS (pEDS)

  • Genes: C1R or C1S

  • Inheritance: Autosomal dominant

  • Symptoms:

    • Severe, early-onset gum disease

    • Early tooth loss

    • Joint hypermobility

    • Mild skin hyperextensibility

    • Easy bruising

    • Pretibial plaques

  • Autism Connection:

    • No established link

    • Oral sensitivity and dental anxiety are common in autism, and may be worsened by painful gum conditions

    • Requires trauma-informed dental care

9. Myopathic EDS (mEDS)

  • Genes: COL12A1

  • Inheritance: Autosomal dominant or recessive

  • Symptoms:

    • Congenital muscle hypotonia

    • Delayed motor milestones

    • Joint hypermobility

    • Proximal joint contractures

    • Mild skin involvement

  • Autism Connection:

    • Muscle tone and movement differences may resemble autistic motor profiles

    • May co-occur with sensory sensitivities and require orthotic or adaptive supports

    • Important to rule out dual diagnosis when developmental delays appear



12. Spondylodysplastic EDS (spEDS)

  • Genes: B4GALT7, B3GALT6, SLC39A13

  • Inheritance: Autosomal recessive

  • Symptoms:

    • Short stature

    • Muscle hypotonia

    • Bowing of limbs

    • Delayed motor development

    • Joint laxity

    • Spinal deformities

  • Autism Connection:

    • Some children with spEDS present with developmental delays

    • Important to differentiate between physical, cognitive, and social development delays

    • May co-occur with neurodevelopmental conditions including autism

11. Brittle Cornea Syndrome (BCS)

  • Genes: ZNF469 or PRDM5

  • Inheritance: Autosomal recessive

  • Symptoms:

    • Thin, fragile corneas (risk of rupture)

    • Severe myopia

    • Keratoconus

    • Hearing loss

    • Joint hypermobility

    • Skin fragility

  • Autism Connection:

    • No direct connection noted

    • Requires vision and hearing supports—important to distinguish from ASD-related sensory differences

    • Overlap possible in cases of sensory aversion or adaptive communication needs



13. Cardiac-Valvular EDS (cvEDS)

  • Gene: COL1A2 (biallelic mutations)

  • Inheritance: Autosomal recessive

  • Symptoms:

    • Severe heart valve disease

    • Skin hyperextensibility

    • Joint hypermobility

    • Easy bruising

    • Flat feet

  • Autism Connection:

    • No direct correlation

    • Cardiac monitoring is crucial during any medical procedure, including for autistic individuals with co-occurring sensory issues or movement disorders

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Understanding Ehlers-Danlos Syndromes (EDS) and Their Connection to Autism Part 2

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