Many highly successful people, including the likes of Elon Musk, Mark Zuckerberg, and Bill Gates, have been included on lists of famous people with autism (though they were never diagnosed). What exactly is autism? How is it different from Asperger’s syndrome? What is internalized ableism, and what is neurodiversity? This is what we’ll talk about today.
A new study has provided insight into how experiences and features of neurodiversity vary amongst adults.
There is variation in people’s attributes and experiences across all populations. Neurodivergent people, such as people with a diagnosis of ADHD, dyslexia, dyspraxia, or autism, may experience the world in distinctive ways. But, we are only beginning to appreciate how traits and experiences associated with neurodivergence differ across the whole population.
New research from the University of Birmingham has provided a more detailed picture of what neurodiversity looks like amongst adults in the UK.
Ian Apperly, Professor of Cognition and Development and Director of the Centre for Developmental Science at the University of Birmingham, who led the study said: “People’s experiences of neurodevelopmental conditions are highly variable, and it is common for people to have more than one condition. Previous research has found, for example, that the prevalence of ADHD among autistic people is around 40%.
“We also know that people show traits associated with neurodiversity to varying extents across the entire population; it’s not just people with a diagnosed neurodevelopmental condition whose experience is influenced by these traits. What we don’t have, is a detailed understanding of what this looks like. This raises important questions that can inform our understanding of the complexity of neurodiversity across the general population.”
Professor Apperly and his team asked 1000 people representative of the UK population aged 18-70 to report on their experiences of characteristics commonly associated with autism, ADHD, dyslexia, and other conditions. For example:
Although characteristics associated with different neurodevelopmental conditions are often considered separately, the research found that when examined at the same time there were high levels of overlap, so people reporting high characteristics for one condition, also tended to report experiences associated with other conditions.
However, the research also found evidence of distinctive characteristics associated with specific conditions, above and beyond this general shared neurodiversity.
Professor Apperly explained: “We found that there is considerable overlap in the broader characteristics associated with different neurodevelopmental conditions so that people with higher levels of characteristics associated with one condition (e.g., ADHD) are also more likely to have higher levels of characteristics associated with other neurodevelopmental conditions (e.g., autism, dyslexia, dyspraxia, tic disorders). But we also discovered that the same traits can be explained by different underlying causes. For example, some people reported high levels of several traits associated with autism, even though they did not report high levels of neurodivergent characteristics overall, while other people reported high levels of autistic traits alongside high levels of traits associated with other conditions. And some combinations were particularly unusual. For example, people showing high levels of traits associated with dyslexia and dyspraxia tended not to show high interest in numbers and patterns.”
This study is the largest examination to date to explore the diversity in how characteristics relating to neurodevelopmental conditions are expressed amongst adults in the UK. The researchers say that it has provided critical benchmark data and a framework approach for examining neurodiversity in the whole population, including people with one or more diagnoses.
Professor Apperly concluded: “Our findings help make sense of the complexity of neurodiversity. They help us understand characteristics and experiences that might be common across neurodevelopmental conditions, as well as those that are distinctive. The study also helps us understand how two people with the same diagnosis might nonetheless have rather different characteristics and experiences. By providing a picture of how neurodiversity appears across the whole population, this research can go on to inform improvements for future studies in this area. The more we know about other people’s experiences, the better we can understand each other.”
Carey and her research team found that autistic adolescents living in a state with any kind of 1915(c) Medicaid waiver had a better chance of remaining enrolled in Medicaid as they entered adulthood CREDIT Meghan Carey, Drexel University
Many autistic people rely on important healthcare coverage from Medicaid for continued services and supports throughout their life. But when entering adulthood, autistic adolescents are facing increased risk of disenrollment from the Medicaid program if they live in a state without a Medicaid waiver. Recently published in JAMA Network Open, researchers from the A.J. Drexel Autism Institute at Drexel University examined whether state-level waivers were associated with reduced risk of Medicaid disenrollment among autistic transition-age youth.
Being insured is important because it is associated with fewer unmet healthcare needs and lower healthcare expenses for families. Medicaid waivers have targeted eligibility criteria based on age and/or diagnosis for specific populations that allow states to provide needed services, including to autistic people. Most states provide services to autistic youth through 1915(c) waivers which provide healthcare services in home- and community-based settings rather than more restrictive settings.
“We found that autistic adolescents living in a state with any kind of 1915(c) Medicaid waiver had a better chance of remaining enrolled in Medicaid as they entered adulthood,” said Meghan Carey, a doctoral student in the Epidemiology department in the Dornsife School of Public Health, and lead author.
Researchers found from age 14 through 21, there was little difference in the probability of disenrollment across states. But at age 22, the probability of disenrollment in states without waivers increased dramatically to more than 13% – whereas it remained stable (about 2%) for those in states with a waiver.
“We also found that compared to autistic young people who are continuously enrolled in Medicaid, a higher proportion of autistic young people who experience disenrollment were Medicaid-eligible due to poverty,” said Carey.
Carey added that findings supported the notion that requirements for remaining continuously enrolled in Medicaid when poverty-eligible may be challenging because small changes in income can result in disenrollment.
The study included 14,739 autistic individuals who experienced disenrollment from Medicaid and 119,216 continuously enrolled autistic individuals. The research team extracted data from Medicaid records from 2008–2016, from 47 states and Washington, DC. Arizona, Rhode Island and Vermont use a different waiver mechanism (Section 1115 waivers which are more broad in scope and reach more constituents compared to 1915(c) waivers) and were excluded.
“Interestingly, autism-specific waivers were not associated with greater decreases in disenrollment for autistic transition-age youth compared with waivers with other diagnosis or functional eligibility criteria,” said Carey. “This suggests that for purposes of mitigating disenrollment among autistic transition-age youth, autism-specific waivers may not be necessary.”
Carey and her research team noted that policymakers should consider bolstering continuity of waiver availability to keep autistic transition-age youth insured and connected to necessary healthcare services, which could improve health-related and other outcomes for autistic adults, or explore other eligibility mechanisms for Medicaid.
The results of the clinical trial of a new wrist device designed to help control the symptoms of Tourette syndrome have shown it significantly reduces the severity and frequency of tics.
The prototype wrist device, which was recently tried out by Lewis Capaldi, delivers electrical pulses to reduce the amount and severity of tics experienced by individuals with Tourette’s and was trialed by 121 people across the UK. The results have been announced in MedRxive.
The device has been developed by scientists at the University of Nottingham and spin-out company Neurotherapuetics Ltd who have recently secured £1m in additional funding to commercialise the ‘Neupulse’ device with the aim of having a device and App available within the next 3 years.
Tourette Syndrome (TS) is a neurodevelopmental condition that is usually diagnosed between the ages of eight and 12. It causes involuntary sounds and movements called tics. Tics are repetitive, stereotyped movements and vocalisations that occur in bouts, typically many times in a single day, and are often preceded by a strong urge-to-tic, referred to as a premonitory urge (PU).
Previous research by scientists from the University of Nottingham’s School of Psychology and School of Medicine used repetitive trains of electrical stimulation to the median nerve (MNS) at the wrist to entrain rhythmic electrical brain activity – known as brain oscillations – associated with the suppression of movements. They found that rhythmic MNS substantially reduces tic frequency and tic intensity, and remove the urge-to-tic, in individuals with TS.
Trial participants used the device at home at a similar time each day for 15 mins for a period of one month. A subset of people were also videoed each day. Each week participants gave feedback on their experience.
The results of the trial revealed that people who received active stimulation experienced a significant reduction in the severity and frequency of their tics. On average, they saw a reduction in tic frequency of more than 25% while they received stimulation.
After using the device for 4 weeks, people who received active stimulation experienced a reduction in their tic severity of more than 35%. In total, 59% of the people who received active stimulation experienced a reduction in tic severity of at least 25% compared to baseline.
13-year-old Mylo was one of the participants in the trial. His parents noticed unusual symptoms when he was a toddler, but he wasn’t diagnosed until he was 10 after his tics became more noticeable. He said: “The device was easy to use – you strap it on like a watch and press a button to start it. You have to make sure the pads are on the back properly otherwise it might hurt a tiny bit. When the stimulation occurs it feels a bit like a fizzing on my wrist and forearm, not painful just a bit different.
The device definitely helped my tics. I still did the occasional tic when it was on but the need to do it was a lot less. I definitely want this device when it is available. I think it can help people with Tourette’s in different ways. For me, I would use it if I was going to the cinema or the theatre – places where you sometimes have to be quiet or still so you don’t disturb people. Tourette’s can be really exhausting sometimes, like when you have a tic attack and can’t get a break from it – this device could really help with that. I think different people would benefit in different ways – because Tourette’s can vary quite a lot. I don’t think I would use it all day, just when I felt I especially needed it.”
Mylo’s mum Alex added: “I feel this device could be a great safety net for us. I don’t know how Mylo’s Tourette’s will progress as he gets older, but knowing there is something out there that can help if he wants it makes me feel so much better. I would also say that the device might not be for everyone – if you are accepting of your tics and they don’t impact your life you might not want or need it, but for those people that really struggle I believe it will make a significant impact with daily challenges. We feel really lucky to have taken part in the trial.”
Professor Stephen Jackson from the University of Nottingham and Chief Scientific Officer at Neurotherapeutics Ltdsaid: “Though the Neupulse device is still early in development, the results of this UK-wide double-blind clinical trial have been extremely encouraging. This device has the potential to dramatically improve the lives of those with Tourette syndrome, who often face challenges managing their tics, by providing increased control over their tics on demand.”
Dr. Barbara Morera Maiquez, Chief Research Officer at Neurotherapeutics Ltd managed the trial, she commented: “The results of this trial mark an exciting step towards an effective, non-invasive treatment for Tourette syndrome that can be used at home. We are now focused on using the knowledge from the trial to develop a commercial device that can be made available to people with Tourette’s.”