with Jane Green and Nikki Hughes duration 2h 10m | for teachers, parents, professionals and Autistic adults.
Jane Green (pictured) and Nikki Hughes provide a wealth of information on Ehlers Danlos Syndrome, the prevalence of the condition in the Autistic community and how this impacts on physical and mental health.
Drawing on their own lived experience and recent research on the topic, they provide useful guidance on identifying EDS, awareness of the barriers that commonly arise when seeking diagnosis, and information on living well with EDS.
Contents
EDS/HSD definition and prevalence
Identifying signs of EDS
Gaining diagnosis
Living with EDS
Useful supports
Once you complete this on-demand course you will receive a certificate of completion. Please ensure you enter your name correctly as the name you enter will appear on your certificate. If using this course for a group training please enter the name of the organisation as only one certificate will be provided. If you require additional certificates please email us and we will provide them to you. Individual certs incur an administrative fee of €5 per cert.
Ehlers Danlos Syndrome is a common connective tissue disorder which co-occurs in Autistic kids and adults, it’s particularly common in girls and women. Research shows that the prevalence of EDS is seven times higher in the Autistic population than in the general public.
EDS (previously JHS, Joint Hypermobility syndrome) and HSD are heritable disorders that affect the connective tissue found throughout the body. People with these conditions have connective tissue which is defective but each person can present differently, from being asymptomatic to severely disabled. Connective tissues can be thought of as the cement between bricks holding up a house. Some of the cement is in the right proportions, but some is not, therefore too weak or crumbly to support the building. If the cement is weak that is likely to affect other parts of the building e.g. the electrics and waterworks.
There are around 14 types of EDS, most common is hypermobile EDS (hEDS) and has no genetic test. They are thought to be rare disorders but it is difficult to say how rare as sufferers are often not believed and can go undiagnosed.
“Often ideas of being ‘double jointed’ come up, however the symptoms of EDS/HSD are much broader and can impact on children’s physical, emotional and psychological development. Pupils may extend their limbs much further than average, dislocating or spraining without previous trauma, and they sometimes do not present as acutely in pain. /HSD are much broader and can impact on children’s physical, emotional and psychological development. Pupils may extend their limbs much further than average, dislocating or spraining without previous trauma, and they sometimes do not present as acutely in pain.” Jane Green
Jane Green and Nikki Hughes are Autistic women who were diagnosed with Ehlers Danlos Syndrome in adulthood. They share their difficult journeys to diagnosis. They give us the signs to recognise which is useful for teachers, parents, professionals and Autistic women, and advice on how to go about a diagnosis.
As the rates of hypermobility and Ehlers Danlos Syndrome are so high in Autistic kids and adults it’s important that people are aware of it. While it is not curable it is treatable and early detection is the key to that treatment.
