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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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The ASF Year End Review of Science

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Just three days before 2024, ASF provides a summary of the the highlights of scientific discoveries and how they have translated into tools families can use. They include ways to speed up diagnosis and reduce waitlists, study of the brains in females and clinical recommendations for helping autistic females at birth, evidence of better practices around intervention and supports, and a review of the numbers of people who have a diagnosis. It isn’t comprehensive and if something was missed, our apologies, but the summary is 20 minutes.

You can read the text here: https://autismsciencefoundation.org/2023-year-end-review/

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In support of AFAB

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A recent publication in the Lancet was dedicated to clinical recommendations to support autistic females at birth. Because more males than females are diagnosed with autism, their needs are often misunderstood, misinterpreted, or just ignored. Researchers, clinicians, scientists, parents and self-advocates from around the world joined together to identify those needs and propose solutions that can be implemented in everyday care. To read the article in it’s entirety, click here: https://authors.elsevier.com/c/1i5LV8Mut2Mzvb

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Can you say strengths and deficits at the same time?

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People tend to go towards a “strengths only” or “weaknesses only” approach to describing autism. But even if you think about a single aspect of autistic challenges – social communication – autistics can show both. How can you measure this, and even more importantly, document it to play to someones strengths while addressing their impairments at the same time? Special guests Dr. Matthew Lerner and Jacquelyn Gates from Stony Brook University explain how this can be done by clinicians.

https://pubmed.ncbi.nlm.nih.gov/36573397/

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Little things to help the autism community

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We’ve heard a lot about social robots – do they help? One or two studies are not going to answer this, but a systematic review and meta analysis will! It turns out when you combined all the data, they do help in social abilities, but not other areas. This is how technology can help those with autism, especially technology which can be adapted to address the heterogeneity across the spectrum. And what about more subtle changes in the environment like light, sound, the built environment in classrooms and the home? Are there things that can be done that should be taken into account when these things are being built or modified? Again, a review article can help decipher all of the little studies that have been published over the year. Listen to specific recommendations for builders, architects, and even you as you make your home more autism friendly.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0269800

https://journals.sagepub.com/doi/10.1177/13623613221102753?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed

https://lukerosen212.medium.com/the-supreme-courts-decision-impact-on-the-rare-genetic-disease-community-f9ac22bd1411

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Everything you wanted to know, and more, about the revisions to the CDC developmental milestones

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In February, the CDC worked with the American Academy of Pediatrics to update the developmental milestones that parents should use when referencing how their child is developing. These milestones describe what should be accomplished by times as young as 2 months and as old as 5 months. These are helpful to all parents who wonder “shouldn’t my child be walking by now” and “how many words should they be saying”? Pediatricians ask parents about these and parents are expected to know them, so prepare yourselves now. What are milestones? Why change them? What are the changes? Learn more on this week’s #ASFpodcast.

https://www.cdc.gov/ncbddd/actearly/index.html

The article is free:

https://publications.aap.org/pediatrics/article/149/3/e2021052138/184748/Evidence-Informed-Milestones-for-Developmental

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Can animals be autistic?

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The answer is obviously “no”, however, animal models are necessary to help understand brain circuitry and improve interventions and supports for not just core symptoms but associated issues like anxiety, OCD, seizures and GI issues. Scientists view behaviors consistent with an ASD diagnosis differently, and this has created some problems in interpretation of animal model data. This week’s #ASFpodcast will break down a recent paper in Genes, Brain and Behavior which addresses inconsistencies in the literature and makes recommendations on how researchers should shift how they think about how they can replicate features of ASD in a model system.

https://pubmed.ncbi.nlm.nih.gov/35285132/

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New ways to solve old problems

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This week’s podcast focuses on innovative methodologies to understand how to reach black families, understand why and when autistic people prefer not to look at faces and how interventions can improve conversation and social communication. They use culturally and racially matched mentors, old home video tapes (keep taking those!) and machine learning to look not just at novel methods but novel ways of studying a particular outcome.

https://pubmed.ncbi.nlm.nih.gov/35232271/

https://pubmed.ncbi.nlm.nih.gov/35228613/

https://pubmed.ncbi.nlm.nih.gov/35229983/

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Who cares about eye gaze?

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Early changes in eye gaze – or the time spent looking at another person’s face compared to the scene around them – is diminished in ASD. It starts to decline at about 12 months and is linked to later social communication behaviors. But many people wonder why this is an early developing behavior worth studying? Also, what happens in school age to kids that show poor eye gaze and infancy, and those who are on the “broader spectrum” but not a diagnosis in infancy – how do they fare at school age? Devon Gangi from UC Davis MIND Institute talks to us about both of these things and why baby siblings are so important

https://pubmed.ncbi.nlm.nih.gov/33615438/

https://pubmed.ncbi.nlm.nih.gov/34008921/

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Super, Superb and Sensational Siblings

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Siblings of people on the spectrum, including autistic adults, are amazing. They support, advocate, fundraise, and now we know they actually have a direct influence on the outcome of their affected brother or sister. What’s that effect? When is it most obvious? Does gender or race matter? All of these questions will be answered by Nicole Rosen of UCLA on this week’s #ASFpodcast. And make sure to tune on on September 8th to or Sam’s Sibs Stick Together webinar. Info below.

https://pubmed.ncbi.nlm.nih.gov/34120483/

https://autismsciencefoundation.org/resources/sams-sibs-stick-together/
click here for a link to register for September 8th