From the Editor
Hello again, readers. I hope my fellow Americans had a good Thanksgiving and the rest of the world wasn’t too confused by why our president pardons a turkey here. Truth be told, we Americans are pretty confused about why we do that, too.
This issue has a lot about the clinical side of the autistic world: diagnosis, interventions, and therapies. There’s also a lot of news via twitter – sometimes I think this newsletter could just be links to tweets and that would be useful enough! We have been getting some much appreciated feedback from readers, and we’re giving you more of what you like. As usual, we’re eager to hear from you and read everything we get, even if we don’t reply directly. Both email and twitter work well for giving feedback.
The New Year is approaching and we’re heading into the holiday season. Winter holidays are said to be the happiest time of the year, and if that’s true for you, we think that’s great. But we know holidays bring their own kind of social challenges, and we autistics often get an extra helping with our own special toppings. If you’re struggling or suffering, I hope you can find some support, because you deserve all the support you need. It can be frustrating to hear “just reach out” for support when reaching out is one of the things you find difficult, so know that at least one person understands how hard that can be and still believes you can do it. If you know of good support resources for autistic folk in crisis, please let us know and we’ll share.
Finally, if you think we’re worth a read, are we also worth recommending to someone? We’re working hard to grow and appreciate it when you subscribe and share, so keep it up, please. We’re doing our best to keep TAI improving and growing, and have big plans for the coming year. Thanks so much for your support!
This Week
⏭ TL;DR
We’re catching up a bit from the holiday skip week here.
December 3rd is the International Day of Persons with Disabilities (IDPD)
Twitter favorite Pete Wharmby has collected a few dozen of his best threads on autism in a handy thread of threads.
A recent thread on self-diagnosis from @GummiPie that’s pretty great.
A thread from @DrJoelSchwartz on why most autism assessments are ableist
An introspective article from NeuroClastic’s David Gray-Hammond on what keeps us up at night: Autistic people and the fear of death
Live-tweeted reporting from ASAN on Ford Foundation’s Curb cut to the ballot box event about the intersection of disability rights and voting rights.
📈 New ASD diagnosis numbers from CDC
#data #US-🇺🇸
This week we saw new information from the US CDC on the increasing number of children “identified with autism spectrum disorder”. This continues recent trends of increased diagnosis and identification of autism.
One in 44 (2.3%) 8-year-old children have been identified with autism spectrum disorder according to an analysis of 2018 data published today in CDC’s Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. This is higher than the previous estimate published in March 2020, which found a prevalence of 1 in 54 (1.9%) 8-year-old children. The 2018 data come from 11 communities in the Autism and Developmental Disabilities Monitoring (ADDM) network. 🔗
These increased numbers are not simple to interpret, and there is ongoing discussion of whether they mean an increase in occurrence or merely an improvement in detection, or some combination of the two.
In an analysis of 2018 data from nearly a dozen states, researchers at the Centers for Disease Control and Prevention found that among 8-year-olds, 1 in 44 had been diagnosed with autism. That rate compares with 1 in 54 identified with autism in 2016.
U.S. autism numbers have been on the rise for several years, but experts believe that reflects more awareness and wider availability of services to treat the condition rather than a true increase in the number of affected children. 🔗
🔗 Autism Prevalence Higher in CDC’s ADDM Network
🔗 New data suggests 1 in 44 US children affected by autism
👶 Earlier autism diagnosis associated with greater trait improvement
#research #skills-training #therapy
Whether there are more autistics now or not, there are more people who know they are autistic now than ever before. What does knowing that that do for us? A study in Israel took a look at whether early interventions can make a difference.
A comparison of early- and late-diagnosed children who started out with comparable ADOS [Autism Diagnostic Observation Schedule] scores again revealed that about three times as many early-diagnosed children show significant improvements on the ADOS as late-diagnosed children — confirming that the findings do not just reflect differences in trait severity at the time of diagnosis. 🔗
This reporting is interesting, but we want to keep in mind that this kind of study can be biased in favor of how well children conform to expectations of neurotypical behavior, which is sort of a problem for assessing autistic children overall. For example:
The children who were diagnosed earlier tended to have more severe social affect scores at diagnosis and less severe restricted and repetitive behavior (RRB) scores than the later-diagnosis group. But neither group showed a statistically significant change over time in RRBs. The finding suggests that early interventions, which disproportionately focus on social communication, should also focus on RRBs, Dinstein says. 🔗
The research paper describes interventions that focus on behavior and traits, so the improvements reported should be considered with that in mind.
Parents of 78 children (34 children in the younger group and 44 children in the older group) completed a follow-up questionnaire within 3 months of the follow-up ADOS-2 assessment. Parents reported the average number of weekly treatment hours that the child received since their diagnosis including speech therapy, psychological treatments, occupational therapy, and developmental or behavioral interventions. In addition, parents indicated whether their child was in a special or mainstream/inclusive education setting. 🔗
We maintain that ABA and similar behavioral interventions are not valid therapy, and that this research is fundamentally biased. A focus on development of externally visible traits seems like a poor substitute for addressing real support needs. Still, it does indicate that autistic children may benefit from early supports.
🔗 Earlier autism diagnosis associated with greater trait improvement
🔗 Early diagnosis of autism in the community is associated with marked improvement in social symptoms within 1–2 years
🙃 Why Social Skills Training Does Not Help Autistic People
#skills-training
We’ve already talked about diagnosis and interventions, so let’s take a closer look at one kind of intervention. @AutSciPerson has looked into a particular social skills training approach to break down what it’s about and its shortcomings.
And here’s the main reason why “social skills training” makes no sense to me: There is no neurotypical formula for social interaction. 🔗
It’s a short-and-sweet post so I’m not going to excerpt much, but that quote above really cuts to the heart of the matter, doesn’t it?
🔗 Why Social Skills Training Does Not Help Autistic People
♿️ Disability in the new workplace
#data #disability-rights #employment
Since it’s International Day of Persons with Disabilities (IDPD), let’s look at this report from Project Include about what companies need to do to accommodate disabled employees. The full report (PDF) is extensive at 33 pages plus appendices, but a twitter thread has some good excerpts if you prefer tl;dr.
It is gratifying to see neurodivergence addressed specifically in this report, alongside all the other categories of disability. This is necessary, but not entirely sufficient. The report itself says it would break down a generic question about neurodivergence into more questions about specific neurotypes. Nevertheless, it’s useful to see the generic ND data included and addressed.
A specific focus of this report involves the COVID-19 pandemic response, and how disabled employees have experienced stress, harassment, and accommodations in that time.
This looks to be a very well-researched and thoughtful report. Working at a company that followed this advice seems like it would be a distinct improvement over all my past workplaces.
🔗 Disability in the new workplace: What companies need to know and do (PDF)
Shiny Things
One of my goals for TAI is to include a weekly comic strip, because I grew up when it wasn’t really news if there wasn’t a funny page at the end. Until then, let me direct you to Theresa Scovil’s Autie-biographical Comics on twitter and patreon.
That’s all for this week. Hope to see you again soon. – josh