Lifelong discrimination linked to high blood pressure in black people

AHA news: lifelong discrimination linked to high blood pressure in black people

Enduring a lifetime of discrimination may increase the risk of high blood pressure in Black people but not in Hispanic, Chinese or white people, a new study suggests.

Previous research has linked lifelong discrimination to the development of high blood pressure, also known as hypertension, in Black people. This new study, however, is among the first to look at multiple types of discrimination in a large multi-ethnic group over a period of time.

The study included 3,297 Black, Hispanic, Chinese and white adults from 45 to 84 years old. They did not have high blood pressure at the start of the study. Participants were asked to report experiences of lifetime and everyday discrimination.

Lifetime discrimination measures included six items, such as being denied a promotion or having life made difficult by neighbors. Everyday discrimination, meanwhile, consisted of nine items, such as being treated with less respect than others or being harassed in day-to-day life.

After nearly two decades, almost half of participants developed high blood pressure. Black participants who reported lifetime discrimination had a 35% increased risk of hypertension, even after accounting for age, income, education, body mass index, physical activity and other factors. Everyday discrimination, however, did not appear to contribute to risk for hypertension.

“Discrimination impacts the health of Black Americans and it should be recognized as a major public health problem,” said Allana T. Forde, lead author of the study published last week in the Journal of the American Heart Association. In November, the American Heart Association issued a “call to action” advisory acknowledging structural racism as “a fundamental cause of poor health and disparities in cardiovascular disease.”

“Health professionals should look beyond traditional risk factors, such as diet and physical activity, and acknowledge discrimination as another risk factor,” said Forde, a researcher at the National Institutes of Health’s National Institute on Minority Health and Health Disparities.

Surprising for researchers, she said, was that lifetime discrimination did not reach the level of statistical significance for contributing to high blood pressure among Chinese and Hispanic participants, even after accounting for being born outside the United States.

Studies in other areas of the U.S. are needed to confirm the findings, researchers said, because the new study was limited to those living in five large cities and one county. In addition, the study only assessed discrimination experiences once at the start of the study, making it unclear what impact changes in discrimination exposure might have had on hypertension development during the follow-up period.

“There is always a concern that not enough subjects were included in the study to show differences in populations or that not all relevant variables were accounted for,” said Dr. Willie Lawrence, chief of cardiology at the Research Medical Center in Kansas City, Missouri. He was not involved in the study.

When measuring decades of discrimination that leads to hypertension, other social determinants of health also must be accounted for. These include health care access, transportation options and a person’s neighborhood.

“Whether communities have sidewalks and green spaces impacts health,” Lawrence said. “If we want to make people healthier, we have to not only eliminate disparities in health care delivery, but we must also seek equity in housing, neighborhoods and education.”

Overall, the study found Black people reported the highest levels of discrimination. About 65% reported lifetime discrimination compared to 42% of Hispanic people, 40% of white people and 23% of Chinese people. Black people most often attributed the unfair treatment to race, whereas white people by far attributed it to non-racial factors such as age, sex or religion. Hispanic and Chinese people were about evenly split between feeling the discrimination was motivated by race versus other factors.

For everyday discrimination, 52% of Black people, 32% of white people, 26% of Hispanic people and 20% of Chinese people reported high levels of exposure.

“Race is complicated in America. It is not genetic,” Lawrence said. “So, I’m not ready to believe that when people of other colors are treated the way Black Americans have been treated for decades that they won’t have higher rates of high blood pressure.”

Even so, he said, “it’s an important study that adds to our belief that social factors impact health.”

Certain, however, is that Black people have higher rates of high blood pressure than other racial and ethnic groups. According to AHA statistics, about 58% of Black adults in the U.S. have the condition, which increases the risk for heart attack and stroke.

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Amazon Shoppers Say This Under-$100 Fold-Up Rowing Machine ‘Exceeds Expectations’ for a Home Gym

When you have limited space and a limited budget, shopping for home workout equipment can feel especially challenging. Treadmills and stationary bikes are classic options, but unless you're willing to pay over $100, your options are sparing. Weight machines are great choices for people who want to work on strength, but they can take up a good portion of a room. 

For many Amazon shoppers, Sunny Health & Fitness's Row-N-Ride Trainer is the perfect balance. It's a glute-and-thigh-activating machine that gets your heart pumping, and it can be folded up and moved out of the way when you're done with your workout. Over 13,000 Amazon shoppers give this machine a five-star rating, and with a sale price under $100, it's a pretty compelling home gym upgrade, according to reviewers: "If you are considering this machine even for a moment, it's seriously worth it."

The machine is Amazon's number one best-selling rowing machine — but it's a little different than the rowing machines you may be used to seeing at your gym. The Row-N-Ride trainer is essentially used in a supported squat position, so users will get the same glute and thigh workout that they would get from a traditional rowing machine, but admittedly without as rigorous an upper-body impact. This special design, however, makes it possible for the machine to fold for storage — something you won't find with any true rowing machines.

The machine offers three levels of resistance, and Amazon shoppers say that it "exceeds expectations" in how good a workout it provides. With gyms closed over the past year, the Row-N-Ride has helped typical gym-goers keep up their fitness routines from the comfort of their own homes. 

"I despise squats, squats with weights, air squats, and the typical squat rack at the gym," writes one reviewer. "My Row-N-Ride Trainer helps me get through the slump while assisting me effortlessly through each squat. Amazing piece of fitness equipment that doesn't take up much room."

Buy It! Sunny Health & Fitness Row-N-Ride Trainer, $94.53 (orig. $129); amazon.com

Other reviewers write that the machine is great for those who have joint pain. "I was able to do 25 to 30 squats at a time before my knees and hip [started] screaming 'NOOO.' With this machine I'm able to pump out 100 squats in less than 5 minutes," says one. "No pain, just the burn of muscles."

While shoppers say the Row-N-Ride is "amazing for glutes," it's also more versatile than you might assume. "It's been almost 2 weeks and I can say, this is by far my favorite machine," writes a reviewer. "After my walk, I climb on this machine and I do 50 reps. I have all 3 of the resistance bands on. I can barely do the 50. This machine is truly a workout all by itself. If you only use your arms and less of your legs, it becomes an upper body workout, too."

Shop the popular fitness equipment on Amazon before this sale ends.


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Study explores neurocognitive basis of bias against people who look different

face

The “scarred villain” is one of the oldest tropes in film and literature, from Scar in “The Lion King” to Star Wars’ Darth Vader and the Joker in “The Dark Knight.” The trope is likely rooted in a long-evolved human bias against facial anomalies—atypical features such as growths, swelling, facial paralysis, and scars. A new brain-and-behavior study from researchers in the Perelman School of Medicine at the University of Pennsylvania illuminates this bias on multiple levels.

The researchers, whose findings were published this week in the Annals of the New York Academy of Sciences, used surveys, social simulations, and functional MRI (fMRI) studies to study hundreds of participants’ responses and attitudes towards attractive, average, and anomalous faces. The findings clarify how the ‘anomalous-is-bad’ stereotype manifests, and implicate a brain region called the amygdala as one of the likely mediators of this stereotype.

“Understanding the psychology of the ‘anomalous-is-bad’ stereotype can help, for example, in the design of interventions to educate the public about the social burdens shouldered by people who look different,” said lead author Clifford Workman, Ph.D., a postdoctoral researcher in the Penn Center for Neuroaesthetics. The center is led by Anjan Chatterjee, MD, a professor of Neurology at Penn Medicine, who was senior author of the study.

Bias against people with facial disfigurements has been demonstrated in various prior studies. Researchers broadly assume that this bias reflects ancient adaptive traits which evolved to promote healthy mate selection, for example, and to steer us clear of people who have potentially communicable diseases. Regardless the cause, for many people, their facial anomalies render them unjust targets of discrimination.

In their study, Workman and colleagues investigated how this bias manifests at different levels, from expressed attitudes towards faces, to actual behavior during simulated social interactions, and even down to brain responses when viewing faces.

In one part of the study, the researchers showed a set of faces that were either average-looking, attractive, or anomalous to 403 participants from an online panel, and asked them to rate the depicted people on various measures. The researchers found that, compared to more attractive faces, participants considered anomalous faces less trustworthy, less content, and more anxious, on average. The anomalous faces also made the participants feel less happy. Participants also acknowledged harboring “explicit bias” reflected in negative expectations about people with anomalous faces as a group.

In the other part of the study, Workman and colleagues examined moral attitudes and dispositions, the behavior during simulated social interaction, and fMRI-measured brain responses, for 27 participants who viewed similar sets of faces.

Here again there was some evidence of the anomalous-is-bad habit of thinking, though it was not clear that this translated into mistreatment of people with anomalous faces. For example, in a simulated donation game measuring pro-sociality—the willingness to be positive and helpful towards another—the participants were not significantly less pro-social towards anomalous-looking people. However, participants in the highest tier of socioeconomic status, compared to the others, were significantly less pro-social towards anomalous-looking people.

On fMRI scans, brain regions called the amygdala and the fusiform gyri showed significant neural responses specifically to anomalous faces. Activity in a portion of the left amygdala, which correlated with less pro-sociality towards anomalous faces, also seemed related to participants’ beliefs about justice in the world and their degree of empathic concern.

“We hypothesize that the left amygdala integrates face perception with moral emotions and social values to guide behavior, such that weaker emotional empathy, and a stronger belief that the world is just, both facilitate dehumanizing people with facial anomalies,” Chatterjee said.

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Rebel Wilson Says People Treat Her Differently After 61-Pound Weight Loss

Seeing things clearly. Rebel Wilson opened up about the change she has seen in others following her dramatic weight loss after her “year of health” in 2020.

Rebel Wilson’s Weight Transformation Over the Years

“I think what’s been really interesting to me is how other people treat you,” Wilson, 40, said during an appearance on The Morning Crew With Hughesy, Ed and Erin radio show on Wednesday, January 27. “Sometimes being bigger, people didn’t necessarily look twice at you. And now that I’m in a good shape, like, people offer to carry my groceries to the car and hold doors open for you. I was like, ‘Is this what other people experienced all the time?’”

The Pitch Perfect actress, who lost more than 60 pounds last year, admitted she was surprised by how much attention people give a weight loss transformation “when there’s so much going on in the world.”

The Isn’t It Romantic star revealed that her inner beauty, however, has never changed.

Rebel Wilson Reveals Diet Secrets, What She Learned During Her ‘Year of Health’

“I like to think I looked good at all sizes and stuff and I’ve always been quite confident,” she said. “So, it wasn’t like I wasn’t confident and then now I’m, like, super confident.”

Wilson, who reached her goal weight of 165 pounds in November 2020, joked that her new outward appearance has created a bit of a selfie monster.

“You can tell that I post, like, a lot of photos of myself on Instagram. I’m like, ‘Oh yeah, loving myself,’” she said. “I know I should calm down a bit on that.”

Last month, the Australia native opened up about why she got serious about health, noting there were lots of ups and downs on her journey.

“I’ve been overweight for about 20 years and I love playing some of the comedic characters like Fat Amy from Pitch Perfect and everything. I love all that stuff but at a certain point, I knew in my heart that I was engaging in some unhealthy behaviors,” she said in a December Instagram Live video. “I needed to change those for the better and so what I’m proud of myself for is for doing that and having a lot more balance now in my life.”

Stars’ Most Dramatic Weight Loss Transformations: Photos

The comedian shared her goals for her “year of health” mission in May 2020, telling fans via Instagram that she was focused on getting to “75kgs,” which is roughly 165 pounds, and career-wise she was “trying to get one of my movies into production.”

She added: “Even if you have to crawl towards your goals, keep going x it will be worth it. Try and give a little bit of effort each day. I know some days are frustrating as hell, you feel like giving up, you get annoyed at the lack of progress … but good things are coming your way.”

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Ultrasound treatment ‘jump-started’ the brains of 2 people in coma-like state

An experimental treatment may have “jump-started” the brains of two patients who had been in a minimally conscious state for months following a coma, according to a new study.

Both patients had severe brain injuries and had shown only limited signs of consciousness for more than a year. But after receiving the treatment — which involved ultrasound to “excite” cells in a brain region called the thalamus — the patients showed sudden improvements in their condition, according to the study, published Jan. 15 in the journal Brain Stimulation. For example, after treatment, one patient could move their head to indicate “yes” or “no” in response to certain questions.

Such quick recovery is unusual in patients in a prolonged, minimally conscious state — meaning the person is awake but shows only small signs of consciousness. In these patients, “any recovery typically occurs slowly over several months and more typically years,” study co-senior author Martin Monti, a professor of psychology and neurosurgery at the University of California, Los Angeles, said in a statement. But these two patients showed significant progress over just days to weeks, he said.

Previous studies have found that stimulating the thalamus with surgically implanted electrodes can lead to similar improvements, but that method is invasive and doesn’t work in all patients, said Dr. Neel Singhal, an assistant professor of neurology at the University of California, San Francisco who was not involved in the study. Singhal called the new research “groundbreaking,” because the method is “non-invasive and can potentially be applied to a much broader set of patients than deep brain stimulation.” 

However, the new findings are very preliminary, and the ultrasound method does not appear to help all patients. There were a total of three patients in the new study; of the two patients that benefited, one showed an initial improvement but later regressed, and a third patient showed no benefit. 

Sudden improvement 

For the study, the doctors used a saucer-like device to aim ultrasonic pulses at specific areas of the brain. In this case, the researchers targeted the thalamus, a structure deep in the brain that acts as a hub to relay sensory information to other parts of the brain. They targeted this region because its performance is typically weakened after a coma, the researchers said.

The three patients in the study underwent two 10-minute sessions with the device, one week apart.

One of the patients was a 56-year-old man who had been in a minimally conscious state for 14 months after having a stroke. After the ultrasound treatment, the man showed that he could consistently respond to commands such as dropping a ball or looking toward photos of his relatives when he heard their names. He could also nod his head for “yes” and shake his head to mean “no” when asked questions about himself. And for the first time since his stroke, he could use a pen and paper and put a bottle to his mouth. However, the man regressed to his minimally conscious state after a few months.

The second patient was a 50-year-old woman who had been in a minimally conscious state for 2.5 years after going into cardiac arrest. She had previously shown no response when given any command, but after the treatment, she consistently responded to commands by moving her head or fingers. She was also able to recognize objects, including a pencil and a comb, for the first time in years. The woman maintained her improvements over the six-month follow-up period, they said.

The third patient, a 58-year-old man who had been in a minimally conscious state for 5.5 years following a car accident, didn’t show any benefit from the treatment.

Groundbreaking findings 

In 2016, this same group of researchers used the ultrasound treatment on a 25-year-old man who had been in a minimally conscious state for just a few weeks. In that instance, the treatment also appeared to fire up his brain — he soon regained full consciousness and language comprehension. 

But at that time, the researchers cautioned that their finding may have just been a coincidence — in other words, the man may have spontaneously recovered just as the researchers started the treatment. In the new report, it’s “very unlikely” that the two patients recovered spontaneously, given the length of time they had been in a minimally conscious state, Monti said.

What is a medically induced coma?

How does consciousness arise in the brain?

What is brain death? New guidelines offer answers.

As for why the third patient in the new study didn’t respond to the treatment, the researchers speculate that perhaps the person’s thalamus was damaged or disconnected from other brain regions. In that subgroup of patients, this method may not help.

“Just to make an example, if someone had a ‘fully disconnected’ thalamus, we could stimulate it all we want, and it would not help re-igniting the complex web of brain networks needed for complex cognitive function (and behavior),” Monti told Live Science in an email.

Even though the changes seen in the study are small, they can mean a great deal to patients and their families. “For our patients, even being just able to communicate with their loved one — in however restricted a fashion … might mean regaining the ability to be part of their social environment, of the lives of their loved ones, and recovering some degree of personal autonomy,” Monti said.

The researchers said they are investigating whether the dose and frequency of ultrasound exposure could affect the level and duration of the benefit. “With further fine-tuning of the stimulation protocol, patient selection and device, this may bring tangible benefits to patients with severe brain injuries,” who currently have no definitively effective treatments available to improve neurological recovery, Singhal told Live Science.

The authors stressed that the ultrasound treatment is experimental and likely will not be available to the public for several years.

Originally published on Live Science.  

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Broadening horizons for people with quadriplegia

Broadening horizons for people with quadriplegia

A system that uses flexible, breathable magnetic skin allows people with severe quadriplegia to move around and choose their surroundings. Developed by KAUST researchers, the high-tech system relies on the user’s facial expressions to accomplish a wide variety of tasks, from moving down the street to using an elevator.

There are a wide variety of assistive technologies for people with quadriplegia, but most systems are not suitable for patients with severe quadriplegia as they often rely on head or neck movements to work. For these patients, the options are limited to camera, tongue control, voice-assistant and neural detector systems. But these either offer a limited range of gestures or are not compatible with outdoor applications. Some also require invasive attachments or continuous attention while using the system.

“Most existing technologies don’t give people a lot of freedom,” says Abdullah Almansouri, a Ph.D. student in KAUST. “We wanted to develop a solution that works inside the house as well as outdoors, allowing them to move around independently.”

The new integrated system includes magnetic skins, smart glasses, a smart wheelchair and smart gadgets that rely on wireless Bluetooth and infrared communication.

The three magnetic skins are placed between the eyebrows and on each side of the nose to track facial movements, such as moving the eyebrows up and down and the nose left and right. These movements are detected by magnetic field sensors in the smart glasses and are converted into electrical signals that are transmitted to the head unit of the wheelchair.

This unit processes these signals into wheelchair or smart gadget commands, such as turning the lights on or clicking the mouse on a computer. The system currently supports 13 distinct facial gestures.

“We were aiming for something easy and accessible but also that couldn’t be easily triggered by accident,” says Almansouri. “The system itself handles the complexity, so the user is only wearing the glasses and magnetic skin to control their surroundings.”

With his team, Almansouri tested the system on three able-bodied users with a high success rate. The participants took less than 15 minutes to learn how to use the system without assistance, with a worst-case success rate of 93 percent.

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Study finds national data may be underestimating illicit drug use in young people

drug use

A study published in Addiction suggests that the UK government’s current national population-based data may be understating illicit drug usage among young people by as much as 20 percent.

Researchers from the University of Bristol compared data from the Crime Survey England and Wales (CSEW) with that of the Bristol-based longitudinal health study Children of the 90s. They found that the estimate of lifetime drug use among young people was 20 percent higher in the Children of the 90s cohort than the CSEW data (40.6 percent in CSEW, compared with 62.8 percent in Children of the 90s).

The difference in lifetime illicit drug use between Children of the 90s and the CSEW was greatest for cannabis and powder cocaine, where the difference in prevalence was 23.2 percent and 16.9 percent respectively.

Senior author Dr. Lindsey Hines, Wellcome Postdoctoral Fellow at Bristol Medical School explains: “Reliable measures of illicit drug use are vital for developing effective policy and treatment programs, and the UK figures come from the Crime Survey England and Wales. We compared these data to that of the Children of the 90s longitudinal health study, and found significantly higher use of all illegal substances. The two data sets use very different methodologies to collect the data, which may be a contributing factor to these differences. The Crime Survey is a one-off face to face survey whereas Children of the 90s has a long-standing relationship of trust with their participants, who have completed postal questionnaires every year since they were teenagers. Our study suggests that this trusted relationship, built over decades with participants, could lead to young people reporting their drug use more accurately.”

Bristol’s Children of the 90s, also known as the Avon Longitudinal Study of Parents and Children (ALSPAC), is a long-term health-research project that enrolled more than 14,000 pregnant women in 1991 and 1992. It has been following the health and development of the parents and their children in detail ever since. Throughout their lives, biological, environmental and lifestyle data has been collected from participants through a series of detailed questionnaires and in-person clinic visits. The data for this study was obtained from questionnaires conducted when the participants were 24 years old, and that age range was matched for comparison with the national data.

Researchers also compared the prevalence of smoking and hazardous alcohol consumption from the Smoking Toolkit Study (STS) and Alcohol Toolkit Study (ATS) to see if the illegality of the substance had a bearing on results. They found there was no difference in tobacco use between Children of the 90s and STS (29.4 percent and 27.4 percent respectively), however 60.3 percent of Children of the 90s participants reported hazardous drinking at age 24, compared to 32.1 percent in the ATS.

Lead author Hannah Charles, Epidemiology Scientist at Public Health England said: “Findings from this study suggest that we are potentially underestimating illicit drug use among young people in the UK which has implications for how well we are able to support young people’s health and mental wellbeing and reduce the negative impact of drug use.

“We know the Children of the 90s participants have a high trust in the study and are used to talking about drug use because they have been asked questions on this topic since they were teenagers. However, as Children of the 90s participants are drawn from one region of the UK, we urgently need to expand this work to other longitudinal health studies (also known as birth cohort studies) to further validate the results. The nature of and illegality of drug use means that it is often a difficult area for researchers to get honest data. We’re not saying they are miss-reporting the levels, but rather that the methodologies could be complimented by other methods and validated using cohort studies, that could help to build up this trust.”

Nic Timpson, Principal Investigator of Children of the 90s health study commented: “Initially started to understand more about pregnancy and birth in the post-war years, there are now different longitudinal health studies across the UK. These health and social science studies have followed their participants throughout their lives, in many cases since their births. Their participants’ commitment and the data they collectively provide underpin important health research taking place around the world.”

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Hope can save people from making bad choices: study

Hope can save people from making bad choices: study

Hope may help prevent you from doing things that aren’t good for you, a new study claims.

The investigators wanted to find out why some people are more likely to fall into risky behaviors, such as gambling, drinking too much, taking drugs and overeating.

To do this, the team at the University of East Anglia in the United Kingdom focused on something called relative deprivation, which is when a person feels that other people have things better in life.

“I think most people have experienced relative deprivation at some point in their lives. It’s that feeling of being unhappy with your lot, the belief that your situation is worse than others, that other people are doing better than you, ” said researcher Shahriar Keshavarz, from East Anglia’s School of Psychology.

“Relative deprivation can trigger negative emotions, like anger and resentment, and it has been associated with poor coping strategies, like risk taking, drinking, taking drugs or gambling,” he explained in a university news release.

“But not everyone scoring high on measures of relative deprivation makes these poor life choices. We wanted to find out why some people seem to cope better, or even use the experience to their advantage to improve their own situation,” Keshavarz said.

“There is a lot of evidence to show that remaining hopeful in the face of adversity can be advantageous, so we wanted to see if hope can help people feel happier with their lot and buffer against risky behaviors,” he explained.

And that’s just what the researchers found with volunteers who were questioned at the start of the study to determine their levels of relative deprivation and hope.

In one experiment, participants played specially designed gambling games that involved risk-taking and placing bets with a chance to win real money.

According to Piers Fleming, also from East Anglia’s School of Psychology, “The aim of this part of the study was to see whether feeling relatively deprived—elicited by the knowledge that one has less income than similar others—causes greater risk-taking among low-hopers and decreased risk-taking among high-hopers.”

Fleming said, “We looked at the people who scored high for relative deprivation, the ones that thought their situation in life was worse than those around them. And we looked at those who also scored high for hope. We found that the volunteers who scored high for hope were much less likely to take risks in the game. Those who weren’t too hopeful were a lot more likely to take risks.”

In another part of the study, the researchers found that higher levels of hope were associated with a low risk of gambling problems, even in people with relative deprivation, according to the report published online Dec. 16 in the Journal of Gambling Studies.

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Clinical criteria for diagnosing autism inadequate for people with genetic conditions

People with certain genetic conditions are likely to have significant symptoms of autism, even if they do not meet all diagnostic criteria, a study concludes.

Researchers at Cardiff University say their findings show clinical services need to adapt so that people diagnosed with autism-linked genetic conditions are not denied access to vital support and interventions.

Published in The American Journal of Psychiatry, the international study analysed data from 547 people who had been diagnosed with one of four genetic conditions, also known as copy number variants (CNVs), associated with a high chance of autism—22q11.2 deletion, 22q11.2 duplication, 16p11.2 deletion and 16p11.2 duplication.

CNVs happen when a small section of a person’s DNA is missing or duplicated. Certain CNVs have been linked to a range of health and developmental issues. They can be inherited but can also occur at random.

The results showed a high prevalence of autism in individuals with these four genetic conditions, ranging from 23% to 58%. The prevalence of autism in the general population is 1%.Using clinical cut-offs, the team also found 54% of people with these genetic conditions who did not meet full autism diagnostic criteria nonetheless had elevated levels of autistic symptoms. There was also considerable variability in symptoms of autism between those who had the same genetic condition.

Dr. Samuel Chawner, based at Cardiff University’s MRC Centre for Neuropsychiatric Genetics and Genomics said: “Our study shows that an individualised approach is needed when assessing the needs of people with genetic conditions. Although many of those who were included in this study would not have met all of the criteria which define someone as having autism, more than half of those with these genetic conditions had significant symptoms associated with it—such as social and communication difficulties or repetitive behaviours.

“There is a danger that being too prescriptive with how autism is diagnosed will result in these individuals slipping through the net and being denied important services. Sadly, many families we have met through doing this research describe longstanding struggles in accessing autism support for their child. This is often due to a lack of integration between genetic testing services and autism diagnosis services.

“Low awareness of genetic conditions can also be a barrier. It is important that clinicians are aware of the risk of autism associated with certain genetic conditions in order to improve opportunities for early diagnosis and support.”

Data for the study was pooled from eight clinical research centres around the world, which had used the “Autism Diagnostic Interview—Revised (ADI-R)” and IQ tests on study participants.

The ADI-R is used internationally in research as well as in clinical settings for making autism diagnoses. It involves an interview with the parent or guardian and asks about the child’s developmental history across areas of social skills, communication skills and repetitive behaviours.

It is estimated that 15% of autistic people and 60% of people with developmental delay have a genetic condition.

Helen Hyde’s 16-year-old daughter, Hermione, was diagnosed with 22q.11.2 Deletion when she was four. Her genetic diagnosis first came to light after it was found she had a cleft palate, which affects her speech. She has Developmental Verbal Dyspraxia (DVD), which causes difficulties with how she processes and communicates language. As a consequence Mini attends a school for pupils with language disorders where she is fully supported in her education. She has also been diagnosed with comorbid anxiety.

Mini, as she’s known to her family, wasn’t formally diagnosed with autism until last year, even though researchers at Cardiff University and her school had previously flagged that she had autistic traits. The family have been involved in studies with Cardiff University’s Copy Number Variant research group for eight years.

“In many ways, the physical diagnosis of Mini’s cleft palate has been easier to deal with than the autism and mental health issues,” said Helen, also mum to Olivia, 19 and Edward, 23.

“People have less of an understanding of Mini’s autistic traits and it’s been much harder to get the right support for her.

“That’s why Cardiff University’s research in this area is so vital. It’s giving us the tools to be able to fight Mini’s corner so that she fulfils her potential.”

Mini said: “At first I did not know what 22q was but now I understand more. My main problem is my speech. Sometimes people don’t understand me and that can make me cross. Sometimes I find lessons difficult and I need a lot of help at school. I know they can learn lots of things from these studies and this will help people with 22q in the future.”

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People eventually adopt healthy behaviors – but it can take time we don’t have during a pandemic

Why do we do things that are bad for us—or not do things that are good for us—even in light of overwhelming evidence?

As someone with a long career in pharmacy, I have witnessed some pretty dramatic shifts in public health behavior. But I won’t sugarcoat it. It generally takes years—or even decades—of dragging people, kicking and screaming, to finally achieve new and improved societal norms.

This plodding time course seems to be an innate human defect that existed long before the current-day pandemic mask and social distancing conundrums. Historically, people aren’t fond of being told what to do.

Notable victories

Attitudes toward smoking have undergone dramatic changes over the past 50 years. Although there has been a gradual decline in smoking, from 42% of the American population in 1965 to the low teens today, there still are a lot of smokers in the U.S. – and premature deaths due to smoking. Even health care workers fall prey to this unhealthy and highly addictive habit.

There was a strongly held view that smoking was a personal decision that do-gooders and the government should keep their noses out of—until the issue was framed differently by studies showing harm caused by secondhand smoke. You are welcome to do what you want to yourself, but it becomes a horse of a different color when it affects others.

Today, public smoking restrictions have become commonplace. But this change in societal behavior didn’t happen overnight or without painful discourse. The journey from the initial 1964 surgeon general’s report on smoking and health to the 2006 surgeon general’s report on secondhand smoke to today was a fractious one.

Another about-face has been the adoption of seat belts. Seat belts save lives. And most people now use them as a result of the nagging warning alarm, the marketing of automobile safety, the law and the data.

This change in behavior, however, followed a rocky road over many years. In my earlier days, I can remember more than one occasion when I hopped into a friend’s car, put on my seat belt and was then chastised for having so little faith in my friend’s driving ability.

Seat belts were required to be installed in new cars starting in 1964 and New York enacted the first seat belt use law in 1984. In the U.S., seat belt use rose from 14% in 1983 to 90% in 2016.

Continuing challenges

In the medical arena, much effort has been expended in promoting healthy behaviors—diet, exercise, sleep hygiene, adherence to prescribed drugs and immunizations. Frankly, the success has been mixed.

Studies have suggested many possible variables associated with not following accepted medical advice: age, gender, race, education, literacy, income, insurance copays, level of physician and pharmacist care—and plain old stubbornness. But there is no single, easily addressable cause of nonadherence to healthy behaviors.

For example, properly prescribed cholesterol-lowering drugs called statins literally add years to patients’ lives by reducing heart attacks and strokes. Even in people with insurance coverage and minimal side effects, 50% of patients discontinue statin therapy within one year of receiving their first prescription.

Vaccines and immunization offer another window into the puzzle of human behavior. Life expectancy in the U.S. rose from 40 years in 1860 to 70 years in 1960. These gains resulted largely from decreased infant and child mortality due to infectious diseases. A better understanding of infectious diseases along with scientific advances, vaccines and antibacterial drugs were the primary factors for this profound increase in life expectancy.

Common sense alone makes the value of vaccines abundantly clear; how many people do you know who are suffering from polio or smallpox? Yet some intelligent, thoughtful friends, family and neighbors are convinced vaccines are not helpful and are even harmful. Some believe wearing a mask is nothing more than a “feel good” placebo. I believe these contrarian beliefs make better press and are therefore more frequently reported than mainstream ones, but clearly there is reason for concern.

The current crisis

Historically, changes in societal behavior that benefit public health occur in fits and starts—and never fast enough for the individuals who fall victim before society comes around.

The urgency imposed by the coronavirus has actually resulted in comparatively swift behavioral changes (masks, hand-washing, distancing) in the U.S. – as scientists learned how the coronavirus is spread, how dangerous it can be and which groups are more susceptible. But these behavioral changes were not as complete or as fast as they should—or could—have been when judged by far better outcomes in other countries.

I am discouraged by the battle between the scientific method and political ideology when it comes to public health. Ideology never seems to change and is therefore more comforting to some—while science evolves as new findings debunk old ideas or confirm new ones. It is clear to all who want to listen: controlling the virus and maintaining the economy is not an either/or choice—they are interdependent.

At the same time, I am buoyed that the tide seems to be turning. As a better understanding of treating COVID-19 has emerged and with more than one highly effective vaccine on the horizon, the “idiot scientists” are gaining ground, both in the lab and at the bedside. Even the most prominent ideologues run to the hospital to get the best treatments science can offer when the effect of their maskless behavior rears up to bite them.

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