Neighborhood E-newsletter: Oral histories from autistic adults, how a lot intervention is sufficient | Spectrum
Illustration by Laurène Boglio
Hello and welcome to the community newsletter! I am your host, Chelsey B. Coombs, the engagement editor of Spectrum.
First thing on this week’s agenda, I want you to know that Spectrum will be hosting a Twitter chat during the Society for Neuroscience conference from 12:30 p.m. to 1:30 p.m. EST on Wednesday, November 10th. Chat with your fellow researchers and our reporters via conference posters, keynotes and presentations with #SpectrumChat. We’ll be leading the discussion from the Spectrum Twitter account.
Our first tweet this week comes from Rozanna Lilley, a postdoctoral researcher in education at Macquarie University in Sydney, Australia. Lilley and her colleagues have published a new study of self-identity in autistic adults diagnosed later in life.
Excited that our article on Self Identity in Late Diagnosed Autistic Adults has just appeared in Autism. The article itself is exciting enough, but what an honor to have my name next to Wenn Lawson! https://t.co/Y1ZWRv0Jl8
– Rozanna Lilley (@RozannaLilley) October 22, 2021
Two of the researchers who were self-diagnosed as adults interviewed other late-diagnosed autistic adults born before 1975 in Australia. Participants spoke most often about differentiating themselves from others, exploring their identities through camouflage and self-discovery, and dealing with trauma. Diagnosing and identifying as autistic had a positive effect on their self-esteem, many said.
“Your vivid and nuanced representations are, as we believe, in radical tension with research that postulates deficits in autistic selfhood,” the researchers conclude.
Megan Freeth, Senior Lecturer in Psychology at the University of Sheffield in the UK, praised the article on Twitter.
A wonderful, really well-written article! https://t.co/0nml301sM2
– ShARL (@ShefAutismRes) October 22, 2021
Sarah O’Brien, a research and policy officer at the UK’s national autism research charity, Autistica, tweeted why autistic researchers interviewing autistic participants were so important.
It makes a real difference if the interviews are conducted by people like you; in the case of this study, autistic researchers are interviewing autistic people.
A wonderful, sensitive and important piece of research that the microphone passes on to autistic people to tell their story https://t.co/GiJPe7LQeL
– Sarah O’brien (@Sarahmarieob) October 22, 2021
Our next thread this week is from David Trembath, Associate Professor of Speech Pathology at Griffith University in Queensland, Australia, who tweeted about a new opinion piece that provides a framework to help clinicians determine how much intervention an autistic child has needed.
How much therapy / support is optimal for autistic children?
In the absence of clear and consistent guidelines, we proposed an evidence-based framework to help parents and practitioners make informed decisions.
Read / download for free until December 8th https://t.co/66xlr5g7JV
– David Trembath (@DavidTrembath) October 19, 2021
A variety of non-pharmacological interventions are used, but the evidence for their effectiveness “is piecemeal rather than systematic, and often relies on evidence from lower quality study designs,” write Trembath and colleagues.
Clinicians need to assess whether the interventions they are turning to are plausible and evidence-based, workable, desirable, and defensible for an individual child and their family by considering all of the options available.
We suggest that recommendations should be PLAUSIBLE (a scientific justification), PRACTICAL (taking into account all child / family / contextual considerations), DESIRABLE (for the child and family), and DEFENSE (taking into account all possible options).
– David Trembath (@DavidTrembath) October 19, 2021
Co-investigator Andrew Whitehouse, a professor of autism research at the Telethon Kids Institute in Western Australia, tweeted that it was “one of the most thoughtful and engaging publications I’ve been fortunate enough to be a part of.”
One of the most thoughtful and compelling jobs I’ve been lucky enough to be a part of.
We describe a possible evidence-based practice framework for determining the most appropriate therapy / support intensity for children on the autism spectrum.
The thread below describes more ???? https://t.co/0w7wVp4zT9
– Andrew Whitehouse (@AJOWhitehouse) October 19, 2021
Lauren Osborne, a speech therapist in New South Wales, Australia replied that this was an important topic, and she recalled an earlier conversation with Trembath about whether continuous weekly therapy was useful for autistic children.
I look forward to reading this!
I remember when I was a college student and you CE, a conversation about “weekly therapy forever” wasn’t necessarily the ideal scenario for children diagnosed with autism. It’s an important topic to think about / discuss.
– Lauren Osborne (she / she) (@speechieLO) October 19, 2021
Trembath responded with a reflection on how “our role as practitioners changes over time”.
Thank you, Lauren – I remember the conversation that grew out of considering that our roles as practitioners change over time in response to each individual’s goals; Preferences; Stage of life; Family and network of friends, colleagues, community; and so forth.
– David Trembath (@DavidTrembath) October 19, 2021
You can watch our October 28 webinar with Zachary J. Williams, a medical and graduate student at Vanderbilt University in Nashville, Tennessee, who spoke about measuring alexithymia in autistic people.
That’s it for this week’s community newsletter! If you have any suggestions for interesting social contributions in the field of autism research, feel free to email me at chelsey@spectrumnews.org. We meet next week!
