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What do Profound Autism Caregivers Need?

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In part 1 of a 3 part series on Profound Autism, ASF interviews Emily Ferguson, PhD from @Stanford shares what she learned by asking parents and caregivers of Profound Autism “what do you need?” The short answer was: “There is No Help“. The responses were overwhelmingly focused on inclusion in any program or service, since they are normally excluded from traditional programs. They also call for better multidisciplinary medical management. Needs were associated with a number of factors. Why talk to caregivers? Their perspectives help identify both research and service priorities in the future.

https://pubmed.ncbi.nlm.nih.gov/38963473

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Recurrence rates for families with an ASD child

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What is the probability of having a future child with autism if you already have one or more? Families want to know. It helps preparation, planning, will hopefully improve early screening and supports. The Baby Siblings Research Consortium analyzed a bigger group of siblings compared to their 2011 numbers and found the recurrence pretty stable – 1 in 5 siblings will have an autism diagnosis compared to 1 in 36 in the general population. However, this number depends on a lot of things: Sex of infant, sex of sibling with an existing ASD diagnosis, number of autistic children in the family, race and socioeconomic status. Listen this week to hear all the numbers.

https://publications.aap.org/pediatrics/article/doi/10.1542/peds.2023-065297/197777/Familial-Recurrence-of-Autism-Updates-From-the?autologincheck=redirected

https://pubmed.ncbi.nlm.nih.gov/38973707

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Culturally sensitive care with Mia Kotikovski

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On this week’s podcast, Mia Kotivkoski, founder of her own 5013c and recent graduate of Stony Brook University, reviews why understanding cultural and contextual factors influence not just an autism diagnosis but general health and outcomes of a broad group of people. They include immigrants, racial and ethnic differences, and socio-economic factors. What can be done? Listen to this week’s podcast to learn more.

https://www.aacap.org/App_Themes/AACAP/Docs/resource_centers/cultural_diversity/competency_curriculum%20_cap_training/cases_supporting_materials/clinics/Bernier-psychopathology_families_and_culture-autism.pdf

https://www.sciencedirect.com/science/article/pii/S1750946718300758?via%3Dihub

https://www.researchgate.net/publication/258193289_The_Impact_of_Culture_on_Autism_Diagnosis_and_Treatment_Considerations_for_Counselors_and_Other_Professionals

https://www.maactearly.org/uploads/9/2/2/3/9223642/considering_culture_facilitatorguide_final_102116.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7614360

https://www.scientificamerican.com/article/why-are-there-so-few-autism-specialists