Is It Genetic? My 40-Year Journey of Misdiagnoses for My Son

• By: Ellen Feldman Arc of New York
• January 2nd, 2023
• co-occurring conditions, community support system, diagnosis, genes, genetic testing, incidence, rare genetic disorder, survey, SYNGAP1, testing, treatment trials, Winter 2023 Issue
• 3185    1

Forty years ago, my son Matthew was born. At the time of his birth, he had no apparent health issues. We began noticing that he wasn’t developing like a neuro-typical child when he wasn’t hitting milestones like rolling over. Since then, we have gone through countless tests and been given...

Ehlers-Danlos Syndrome and Its Comorbidities as a Co-Occurring Health Issue in Autistic People

• By: Tara J. Marshall, BA, SLPA Aimee Piller, PhD, OTR/L Piller Child Development
• July 19th, 2022
• co-occurring conditions, comorbidities, diagnosis, Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, occupational therapy, pain, Summer 2022 Issue, testing, treatment
• 14738    2

Ehlers-Danlos Syndrome (EDS) occurs in as many as 8% of autistic individuals with even a higher percentage that may have hypermobility spectrum disorders (HSD) (Cederlof et al., 2016, Kindgren et al., 2021). This estimate is low since EDS is more commonly diagnosed in females (Castori, 2012), who...