Clinical Scorecard: Health Outcomes and Experiences in Autistic and Non-Autistic Adults with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

At a Glance

Key Highlights

• hEDS/HSD diagnosis is clinical, based on joint hypermobility, systemic symptoms, family history, and exclusion of other disorders; no genetic test currently exists
• Autistic individuals have higher prevalence of hypermobility (28-39%) and may experience overlapping symptoms including sensory processing differences and autonomic dysregulation
• People with hEDS/HSD report poorer quality of life and healthcare satisfaction; autistic people face additional barriers to care including sensory sensitivities and communication differences

Guideline-Based Recommendations

Diagnosis

• Use clinical assessment including Beighton score for joint hypermobility, systemic symptom evaluation, family history, and exclusion of other connective tissue disorders
• Recognize limitations of Beighton score sensitivity and consider age- and sex-related differences in tissue laxity
• Consider co-occurring autism and assess autistic traits to understand patient profile and needs

Management

• Symptom management through physiotherapy, pain management, occupational therapy, and mobility aids
• Address co-occurring conditions with appropriate medication and supportive therapies
• Improve healthcare professional knowledge of hEDS/HSD and autism to enhance care quality

Monitoring & Follow-up

• Regular assessment of musculoskeletal symptoms, pain levels, fatigue, and autonomic symptoms
• Monitor mental health status given high prevalence of anxiety and depression in both hEDS/HSD and autistic populations
• Evaluate patient satisfaction and barriers to care to tailor interventions

Risks

• Delayed or missed diagnosis due to heterogeneous presentation and lack of genetic testing
• Misdiagnosis with other conditions leading to inappropriate management
• Increased risk of poor mental health and reduced quality of life, especially in autistic individuals with hEDS/HSD

Patient & Prescribing Data

Adults diagnosed with hEDS/HSD, including autistic individuals and those with high autistic traits

No specific pharmacological treatments for hEDS/HSD; management focuses on symptom relief and co-occurring conditions; tailored approaches needed for autistic patients considering sensory and communication differences

Clinical Best Practices

• Adopt a multidisciplinary approach involving physiotherapists, occupational therapists, pain specialists, and mental health professionals
• Enhance clinician education on hEDS/HSD and autism to reduce diagnostic delays and improve patient care
• Consider sensory sensitivities and communication styles when delivering care to autistic patients with hEDS/HSD
• Use patient-reported outcomes to guide individualized management plans
• Recognize and address mental health comorbidities proactively

Related Resources & Content

• 2017 hEDS Diagnostic Criteria
• Systematic Review on Autism and Hypermobility
• Healthcare Experiences in hEDS/HSD
• Autism and Physical Health Conditions
• Beighton Score Limitations