Frontiers in Neurodevelopmental Disorders

A new rare gene mutation database including behavioural traits and detailed profiling for people with autism and researchers to participate with consent in future clinical trials

Building an autism research registry: Q&A with Tony Charman A purpose-built database of participants who have shared genomic and behavioral data could give clinical trials a boost, Charman says.

An important article on why the term “profound autism” is critical for 27 % of people with autism and their families. “Neurodivergent” is simply not appropriate in these cases. Research is urgently needed to improve understanding of this group and redice complex behavioral profiles.

https://www.facebook.com/share/p/tywAzaWNHoEF2kkX/?

My son is profoundly autistic. Please don’t say he’s merely ‘neurodiverse.’ - The Boston Globe It's dangerous to eliminate terminology that accurately describes thousands of people with severe disabilities.

Really important discussion about the rifts in the autism community right now. Some corners of the internet suggest that profound autism doesn't exist. A great article interviewing (an admittedly bias) group of people but the result is that nuance is needed.

Building bridges: Collaboration across the autism community An autistic person and the mother of an autistic child explore partnership in the autism community.

Via Autism Science Foundation:

For the first time ever, CDC researchers report prevalence of "Profound Autism," reflecting a growing awareness that profound autism is different from the broader "Autism Spectrum Disorder." 26.7% of autistic people have profound autism.

Read ASF's press release about the CDC's report here:

CDC Reports Profound Autism Statistics For The First Time The Centers for Disease Control and Prevention (CDC) reported 26.7 percent of people with autism spectrum disorder have profound autism. It is the first time the CDC has reported this statistic.

New findings from Prof Gaia Novarino's lab in Austria show that Branched Chain Amino Acid (BCAA) transporters are critical for supplying neurons in nutrients in some metabolic forms of autism

Rare autism-linked mutation starves growing neurons of essential nutrients The mutation prevents certain amino acids from entering neurons, causing the cells to die early in development.

Latest figures are in from the US CDC. 2020 data for school aged children suggest a prevalence of 1 in 36 children are diagnosed with autism spectrum disorder. Autism is 3.8 times more prevalent in boys than girls.

U.S. autism prevalence continues to rise as race and s*x gaps shrink, new stats show About 1 in 36 children in the United States has autism, up almost 20 percent from the previous estimate, reflecting improved identification, particularly among girls and Black, Hispanic and Asian or…

Critical interactions between families, neurodiverse and non autistic people in the research space. These voices need to come together in a collaborative way to move things forward.

Autism research at the crossroads | Spectrum | Autism Research News The power struggle between researchers, autistic self-advocates and parents is threatening progress across the field.

Investigating how retracted publications slip through the cracks and continue to be cited

Andrew Wakefield’s fraudulent paper on vaccines and autism has been cited more than a thousand times. These researchers tried to figure out why. Elizabeth Suelzer Retraction Watch readers are no doubt familiar with one of the most consequential retractions of this century, namely that of the 1998 paper in The Lancet by Andrew Wakefield and …

More insights into the history of autism - new names we need to know predating Kanner and Asperger: Anni Weiss and Georg Frankl, both born in 1897 and Grunya Sukhareva

The new history of autism, part II | Spectrum | Autism Research News For decades, two figures have dominated the history of autism studies. Today, newly excavated documents are calling into question the primacy of these men as founders of the field.

An important debate about the term "profound autism". This is crucial for individuals who require 24h care (and their families). These people do not have a voice to advocate for themselves.

From deficits to a spectrum, thinking around autism has changed. Now there are calls for a 'profound autism' diagnosis A reignited debate centres around whether broadening the diagnosis of autism has made the diagnostic label no longer entirely fit-for-purpose.

Rewriting the history of autism with Grunya Sukhareva’s first description of ASD in 1925.

Writing 'a new history of autism' | Spectrum | Autism Research News Spectrum talks with David Dobbs about researching his latest article, and what he found.

Genetic testing and making those results available will help understanding of Autism types and therapies

Lags in genetic testing, variant reporting hinder autism research | Spectrum | Autism Research News Few autistic people undergo the recommended genetic testing for their condition, and test results often do not make their way into public databases, where researchers and clinicians can learn from them.