Spoon Theory is a useful concept for sharing the invisible struggles experienced by people with certain illnesses, disabilities, and/or differing abilities.🥄 This video explores the origin of Spoon Theory as well as how it works and how you can apply it to your life as someone on the spectrum. Scroll down for timestamps you can click to jump to specific sections of the video.
This week’s video is a chatty sort of Q&A, largely because I’m trying hard to prevent burnout right now. I have some really exciting videos lined up so please keep an eye out for them over the next month! What benefits have you been encountering from being open about your autism diagnosis, and how do you deal innerly with the negative ones? Doesn’t it scare you the idea of having a kid who has a high probability of being autistic? How do you tell your friends and family that you are autistic? Did you ever think you also have ADHD? There seems to be much overlap with executive function. If you had a diagnosis before kids what would you have done to get ready for the overwhelm?
T. A. Meridian McDonald, PhD, faculty research instructor in the Department of Neurology at Vanderbilt University Medical Center CREDIT Vanderbilt University Medical Center
Physical health disparity conditions in autistic adultshave not been the focus of any research funded by the U.S. National Institutes of Health (NIH) in the last four decades, an analysis of a federal database found.
Using the NIH Research Portfolio Online Reporting Tools Expenditures and Results (RePORTER) database to determine whether the NIH has funded any research related to physical health disparity conditions in autistic adults, T. A. Meridian McDonald, PhD, faculty research instructor in the Department of Neurology at Vanderbilt University Medical Center, used 30 separate searches to discover that “autism” is often used as a key term – not the target population. Results of the study are published todayin the Journal of Autism and Developmental Disorders(JADD), a top autism research journal.
Autistic adults are at greater risk of nearly every major chronic health condition, including obesity, diabetes, gastrointestinal and sleep disorders, and cardiovascular and immune conditions. These conditions contribute to increased pain and mortality experienced by autistic people as well as to decreased quality of life such as lower rates of employment and social inclusion.
“We don’t know if treatments designed for the general population will work for autistic people,” McDonald said. “Take cognitive behavioral therapy, the front-line treatment of insomnia, for example. This treatment is typically carried out in six to eight face-to-face provider-patient clinic sessions. During these sessions, the clinician provides a ton of information about how sleep works and how to do the treatment. The delivery of this information in these types of sessions may overtax many autistic people’s information and social processing abilities.”
It’s key to understand how treatments work in different populations, accounting for social and physiological determinants of health, McDonald said. In the example of insomnia, the treatment often requires patients to change routines and habits, and that may be a serious challenge for autistic patients, she said.
McDonald used “autism,” and “adult” coupled with one of 30 health disparity condition terms in the RePORTER, a repository of NIH-funded projects that is searchable with key terms. Searches surfaced numerous studies, which, upon analysis, often used “autism” in a project as a key term rather than a study designed to evaluate the prevalence or manifestation of disease or treatment in autistic people. Research found only four studies that look at health conditions related to autistic adults, but none of the studies examined the treatment of physical health disparity conditions in autistic adults.
“Many of these studies are focused on the prevention of multiple health conditions. A study’s goals might focus on the prevention of neurological conditions, such as stroke, epilepsy and autism. This type of study is not looking at the prevention of stroke in autistic people, who may have different risk factors or need specialized treatment options,” said McDonald, lead author on “Mind the NIH-Funding Gap: Structural Discrimination in Physical Health-Related Research for Cognitively Able Autistic Adults.”
“We need funding to test whether interventions are effective with autistic people. If treatments are not effective, then funded research is needed to adapt or develop interventions that are effective in treating physical health disparity conditions experienced by autistic adults,” she said.
Both the U.S. Congress and the Interagency Autism Coordinating Committee identified co-occurring physical health conditions as a research priority and allocated funds for autism research to the NIH. Each of the 27 institutes that comprise the NIH have latitude in how it determines its research priorities.
The research in JADD describes several potential “nodes,” or processes that contribute to the lack of studies focused on health disparities in autistic people, including designation of a “primary disease,” which are often thought to be the cause of other conditions. McDonald and colleagues note this assumption has not been tested in autism and “this designation [of primary disease] prevents researchers from testing whether co-occurring physical health conditions can be treated in autism.”
Audrey Scudder, co-author and an autistic undergraduate student at Vanderbilt University and active member of both the McDonald’s Spectrum for Life Lab and the Vanderbilt Autism & Neurodiversity Alliance, wants to prioritize advocacy for the autistic community as she pursues a research career.
“Many of my family members, friends and other fellow community members have expressed a need for health care that is accessible and effective for autistic people” Scudder said. “Addressing health disparities would greatly improve the quality of life of many autistic adults who struggle with finding care that treats their whole personhood. This study indicates that at this point in time there isn’t enough research supporting what’s effective in this population of adults.”
Autistic adults have been left out of the recent shift to root out disparities in research, diagnosis and treatment, McDonald said.
“Moving forward I want the NIH to change funding policies to prioritize research on physical health disparity conditions in autistic adults. At the very least, they should not be excluded from review across agencies that fund physical health research,” she said.
Adults with high levels of attention-deficit hyperactivity disorder (ADHD) symptoms are more likely to experience anxiety and depression than adults with high levels of autistic traits, according to new research led by psychologists at the University of Bath in the UK.
This study is the first to show that ADHD predicts poor mental health outcomes in adults more than other neurodevelopmental conditions, like autism.
Until now, there has been a dearth of information on the effects of ADHD on poor mental health, with far more research focusing on the impact of autism on depression, anxiety and quality of life. As a result, people with ADHD often struggle to access the clinical care they need to cope with their symptoms.
The study’s authors hope their findings will trigger new research into ADHD and ultimately improve the mental health outcomes for people with the condition. ADHD is a neurodevelopmental condition characterised by inattention and/or hyperactivity and impulsivity. The condition is estimated to affect between 3% and 9% of the population.
Blue Monday
Speaking on Blue Monday (January 16) – the third Monday of January, described by some as the gloomiest day of the year – lead researcher, Luca Hargitai, said: “Scientists have long known that autism is linked to anxiety and depression, but ADHD has been somewhat neglected.
“Researchers have also struggled to statistically separate the importance of ADHD and autism for mental health outcomes because of how frequently they occur together.”
Ms Hargitai, a PhD Researcher at Bath, added: “Our aim was to precisely measure how strongly ADHD personality traits were linked to poor mental health while statistically accounting for autistic traits.”
The new research – a collaborative effort between the Universities of Bath, Bristol and Cardiff, and King’s College London – is published this week in the prestigious journal Scientific Reports. It comes in the same month that two British TV personalities – Johnny Vegas and Sue Perkins – have opened up about their recent diagnoses of ADHD.
“The condition affects many people – both children and adults – and the fact that more people are willing to talk about it is to be welcomed,” said Ms Hargitai. “The hope is that with greater awareness will come more research in this area and better resources to support individuals in better managing their mental health.”
Overly active, as though driven by a motor
The study used a large, nationally representative sample of adults from the UK population. All participants completed gold standard questionnaires – one on autistic traits, the other on ADHD traits – responding to statements such as “I frequently get strongly absorbed in one thing” and “How often do you feel overly active and compelled to do things like a motor drove you?”
The researchers found that ADHD traits were highly predictive of the severity of anxiety and depression symptoms: the higher the levels of ADHD traits, the more likely a person is to experience severe mental health symptoms. Through innovative analytical techniques, the study authors further confirmed that having more of an ADHD personality was more strongly linked to anxiety and depression than autistic traits.
These results were replicated in computerised simulations with a 100% ‘reproducibility rate’. This showed, with great confidence, that ADHD traits are almost certainly linked to more severe anxiety and depression symptoms in adults than autistic traits.
Shifting the focus of research and clinical practice
Ms Hargitai said: “Our findings suggest that research and clinical practice must shift some of the focus from autism to ADHD. This may help to identify those most at risk of anxiety and depression so that preventative measures – such as supporting children and adults with the management of their ADHD symptoms – can be put in place earlier to have a greater impact on improving people’s wellbeing.”
According to Dr Punit Shah, senior author and associate professor of Psychology at Bath, another important aspect of the new study is that it advances scientific understanding of neurodevelopmental conditions.
“By addressing the shortcomings of previous research, our work provides fresh information about the complex links between neurodiversity and mental health in adults – an often overlooked area.
“Further research is now needed to delve deeper into understanding exactly why ADHD is linked to poor mental health, particularly in the mental processes that might drive people with ADHD traits to engage in anxious and depressive thinking.
“Currently, funding for ADHD research – particularly psychological research – is lacking. This is significantly pronounced compared to the relatively high funds directed at autism.
“As the evidence becomes clear that ADHD isn’t just a childhood condition but persists throughout life, we must adjust our research agendas to understand ADHD in adulthood better.”
Commenting on the new findings, Dr Tony Floyd, CEO of ADHD Foundation, The Neurodiversity Foundation, said: “This research demonstrates clear evidence of the increased risks of mental health comorbidities associated with adult ADHD. This is a step towards recognising the broader impact of unmanaged and untreated ADHD. We hope this research will lead to more commissioned research in this area. We also hope it will result in changes to the design and delivery of health services.
“The cost implications to the NHS of leaving ADHD untreated, and the need to better train health practitioners in primary and secondary care, are now more apparent. And of course, there are other costs too that need to be considered – to the health of UK citizens with ADHD and to their family life, employability and economic well-being. These costs are often hidden, but they are considerable.
“This research from Bath University will add to the growing national debate and the business case for a national review of health services for ADHD across a person’s lifespan.”
Investigators have developed a freely available measure of autism symptoms that can help to screen for autism and monitor changes over time in symptoms. Research on the development and validation of the Autism Symptom Dimension Questionnaire (ASDQ) is published in Developmental Medicine & Child Neurology.
After development of an initial 33-item version, a revised 39-item version of the ASDQ (available at https://prolific.co/) was applied to 1,467 children and adolescents, including 104 with autism spectrum disorder. The questionnaire was found to be reliable and valid for evaluating autism symptoms across age, sex, race, and ethnicity.
“Having a freely available and modern measure of autism symptoms can greatly improve clinical practice and advance research into autism spectrum disorder,” said corresponding author Thomas W. Frazier, PhD, of John Carroll University.