Posted on Autism

Innovative model helps kids on autism spectrum avoid behavioral drugs in ER

Noise pollution in hospitals -- a rising problem

An innovative care model developed by Nemours Children’s Hospital for children with autism ) in the emergency department (ED) reduces the use of medication administered to kids who are prone to stress and sensory overload in this care setting. Information about this care model was presented today at the Institute for Healthcare Improvement’s National Forum.

“Our program was designed to help prevent escalation of anxiety and agitation in children with autism , therefore leading to the reduced use of sedatives and restraints,” said Cara Harwell, ARNP, CPNP, PMHS, lead researcher and a Nurse Practitioner at Nemours Children’s Hospital. “Sedative medications do have side effects, and if we can manage kids’ stress in other ways, we create a better experience for them and their families.”

In their evaluation of the program, Harwell and her colleagues reviewed two years of electronic health records and identified 860 pediatric emergency department visits in which this model, known as the REACH (Respecting Each Awesome Child Here) Program, was used for patients with autism or similar conditions. With this approach, fewer than six percent of these patients needed an anxiolytic (anxiety medication). None needed an antipsychotic (for aggressive behavior) or an alpha-agonist (for hyperactivity and anxiety). Fewer than one percent needed physical restraints.

There is limited comparative research, but one study, not employing the REACH model, found that sedation or restraints were used in nearly one-fourth of ED visits by children and adults with autism .

Nemours’ REACH Program, now in its third year, accommodates children with autusm , sensory disorders, mental health disorders and similar conditions. Staff receive ongoing training regarding autism , REACH concepts, procedure planning, and recognizing and managing anxiety and agitation. Distraction objects and rewards are placed throughout the ED, which includes a sensory-friendly exam room. Harwell, along with Emily Bradley MA, Certified Child Life Specialist, developed and instituted the program at Nemours Children’s Hospital, which was one of the first in the nation to adapt care to the needs of children in the ED.

Beyond the reduced use of restraints and sedatives, patient satisfaction survey results show the program has led to improved patient experiences and a survey of providers found improved comfort and knowledge for treating children with autism .

“The noise and pace of the ED environment can greatly increase stress for children with autism , leading to the need for medications or restraints to help manage irritability, anxiety or harmful behavior. Avoiding these stimuli provides better, more positive care experiences for these kids,” said Harwell.

Posted on Autism

New landmark strategy to improve the lives of autistic people

  • The Autism Strategy aims to tackle the inequalities and barriers autistic people face so they can live independent and fulfilled lives

  • Faster diagnoses and better access to health and social care for autistic people of all ages
  • Commitments will support better education tailored to the needs of autistic children and young people

Improving the lives of autistic people is the focus of a new multi-million pound strategy launched by the government today.

Backed by nearly £75 million in the first year, it aims to speed up diagnosis and improve support and care for autistic people. The funding includes £40 million through the NHS Long Term Plan to improve capacity in crisis services and support children with complex needs in inpatient care.

Autistic people face multiple disadvantages throughout their lives, with too many struggling to get support that is tailored to their needs at an early enough stage and facing stigma and misunderstanding, often leaving them lonely or isolated. Through this new strategy, steps will be taken to improve diagnosis, which is crucial to help people get the support they need, and improve society’s understanding of autism.

The 5-year strategy was developed following engagement with autistic people, their family and carers. It will support autistic children and adults through better access to education, more help to get into work, preventing avoidable admissions to healthcare settings, and training for prison staff to better support prisoners with complex needs.

Health and Social Care Secretary Sajid Javid said:

Improving the lives of autistic people is a priority and this new strategy, backed by almost £75 million in the first year, will help us create a society that truly understands and includes autistic people in all aspects of life. It will reduce diagnosis waiting times for children and adults and improve community support for autistic people. This is crucial in reducing the health inequalities they face, and the unacceptable life expectancy gap that exists today.

Minister for Care Helen Whately said:

Far too many autistic people still struggle to get the support they need in childhood, and as adults – and this is often exacerbated by not getting a timely diagnosis.

This landmark strategy will help give autistic people equal opportunities to flourish in their communities as well as better access to the support they need throughout their lives.

Minister for Children and Families Vicky Ford said:

Many people who have autism face unacceptable barriers in every aspect of their lives – in health, employment and still too often in their education. I’m proud that the new autism strategy will, for the first time ever, also consider how to better support autistic children and young people’s access to education.

A huge part of how we can address the inequalities that these children and young people face is by increasing our awareness and understanding of their needs, and tailoring the support available to them. Working closely with the healthcare services, we can level up outcomes for autistic young people in generations to come.

There are approximately 700,000 autistic people in the UK and a large number experience health inequalities during their lives.

The life expectancy gap for autistic people is approximately 16 years on average compared to the general population and almost 80% of autistic adults experience mental health problems during their lifetime.

The COVID-19 pandemic has exacerbated challenges many autistic people already face, such as loneliness and social isolation, and anxiety.

This new strategy has been developed with the views and experiences of autistic people provided in response to the government’s call for evidence in 2019. The strategy will run until 2026 and aims to:

  • improve understanding and acceptance of autism within society: developing and testing an initiative to improve the public’s understanding of autistic people – both the strengths and positives as well as the challenges, working with autistic people, their families and the voluntary sector. This will help people recognise the diversity of the autistic community – that every autistic person is different. It includes improving understanding of the strengths and positives of being autistic, as well as the challenges people might face in their daily lives and how distressed behaviour can manifest itself
  • strengthen access to education and support positive transitions into adulthood: testing and expanding a school-based identification programme based on a pilot in Bradford from 10 to over 100 schools over the next 3 years. Early findings from the pilot show children are being identified earlier and getting support quicker
  • support more autistic people into employment: improving the accessibility of job centres for autistic people, to get them the right help to find jobs or employment programmes
  • tackle health and care inequalities: providing £13 million of funding to reduce diagnosis waiting times and increase availability of post-diagnostic support for children and adults, and address backlogs of people waiting made worse by the COVID-19 pandemic
  • build the right support in the community and supporting people in inpatient care: providing £40 million as part of the NHS Long Term Plan to improve community support and prevent avoidable admissions of autistic people and those with a learning disability, and £18.5 million to prevent crises and improve the quality of inpatient mental health settings
  • improve support within the criminal and youth justice systems: reviewing findings from the call for evidence on neurodiversity, and developing a toolkit to educate frontline staff about this, and the additional support people might need

Early identification can play an important role in enabling children and young people to get timely support, which is crucial in preventing escalation of needs.

While autism is not a learning disability, around 4 in 10 autistic people have a learning disability.

Some autistic people will need very little or no support in their everyday lives while others may need high levels of care, such as 24-hour support in residential care.

Caroline Stevens, Chief Executive of the National Autistic Society, said:

We and our supporters have long campaigned for a fully funded public understanding campaign, significant investment in reducing diagnosis waiting times and better post-diagnostic support. No one should feel judged for being autistic, or to have to wait many months for a potentially life-changing diagnosis and vital help and support. 

We’re really pleased to see concrete actions to tackle this in the first year of the new strategy, alongside other important commitments. The following 4 years will be just as vital. It’s crucial that the government invest in autistic people, and finally create a society that really works for autistic children, adults and their families.

Nellie Allsop, autistic woman and campaigner, said:

I’m extremely happy to see the launch of the strategy.

Having been diagnosed last year, age 25, I’m still yet to tell people close to me that I’m autistic, for worry that they won’t quite ‘get it’. That’s why I’m delighted to hear that this strategy aims to improve the understanding and acceptance of autism amongst the general public.

I’m also pleased it will include plans to build the right mental health support in the community for autistic people. As someone who avoided a hospital admission thanks to the work of an NHS crisis team, I’ve experienced first-hand the benefits of good mental health support in the community. Nevertheless, more does need to be done to improve community support and understanding of autism within all community mental health teams – something I hope this strategy will address.

This strategy will align with wider government work through the National Disability Strategy and the Special Educational Needs and Disability (SEND) review. The government will ensure issues relevant to autistic people are considered as part of these programmes of work.

This strategy’s accompanying implementation plan will lay the foundations in the first year, for what the government aims to achieve over the course of the next 5 years. It will be refreshed in subsequent years, in line with future Spending Reviews.

Posted on Multiple Sclerosis

Soda, sugar-sweetened beverages linked to more severe symptoms for people with multiple sclerosis

Drinks and multiple sclerosis
Drinks and multiple sclerosis


For people with multiple sclerosis (MS), drinking around 290 calories per day of soda or other sugar-sweetened beverages, or the equivalent of about two cans of non-diet soda, may be tied to more severe symptoms and a higher level of disability compared to people with MS who seldom consume sugar-sweetened beverages, according to a preliminary study released today that will be presented at the American Academy of Neurology’s 71st Annual Meeting in Philadelphia, May 4 to 10, 2019. People who seldom drank sugar-sweetened beverages consumed an average of seven calories in sugar-sweetened beverages per day, or the equivalent of one-and-a-half cans of non-diet soda per month. Soda and other sweet beverages were the only type of food that was related to MS symptoms in the study.

“MS patients often want to know how diet and specific foods can affect the progression of their disease,” said study author Elisa Meier-Gerdingh, MD, of St. Josef Hospital in Bochum, Germany, and a member of the American Academy of Neurology. “While we did not find a link with overall diet, interestingly, we did find a link with those who drank sodas, flavored juices and sweetened teas and coffees.”

The study involved 135 people with MS. Participants completed a questionnaire about their diet. Researchers then looked at how close each participants’ diet was to the Dietary Approaches to Stop Hypertension (DASH) diet. The DASH diet recommends whole grains, fruits and vegetables, low-fat dairy products, lean meats, poultry and fish, and nuts and legumes and limits foods that are high in saturated fat and sugar.

“We chose to study the DASH diet because adherence to the DASH diet is associated with lower risk of other chronic diseases like high blood pressure, diabetes and cardiovascular diseases,” said Meier-Gerdingh.

Researchers also measured the participants’ level of disability using the Expanded Disability Status Scale, a common method to quantify disability ranging from 0, no symptoms, to 10 points, death due to MS. A total of 30 participants had severe disability.

Overall, researchers did not find a link between what participants ate and their level of disability.

For soda and sugar-sweetened beverages, the participants were divided into five groups based on how much they drank. The people in the top group drank an average of 290 calories of sugar-sweetened beverages per day, while the lowest group seldom drank sugar-sweetened beverages.

The study found that participants who consumed the largest amounts of sugar-sweetened beverages were five times more likely to have severe disability than people who seldom drank sugar-sweetened beverages. Of the 34 people in the top group, 12 had severe disability, compared to 4 of the 34 people in the bottom group. The top group had on average a disability score of 4.1 points, while the bottom group had an average of 3.4 points.

“While these results need to be confirmed by larger studies that follow people over a long period of time, and the results do not show that soda and sugar-sweetened beverages cause more severe disability, we do know that sodas have no nutritional value and people with MS may want to consider reducing or eliminating them from their diet,” Meier-Gerdingh said.

Limitations of the study include the relatively small number of participants. The study also assessed participants’ diets and sugar-sweetened beverages at the same time as disability, so it is not possible to distinguish whether it is actually an aspect of diet, like sugar-sweetened beverages, that contributes to higher disability or whether more severe disease impacts a person’s ability to have a healthy diet.

Additional studies are needed to evaluate whether sugar-sweetened beverages affect the course of the disease.

Posted on ADHD, Autism

Siblings of children with autism or ADHD are at elevated risk for both disorders

Meghan Miller, PhD

Meghan Miller, PhD CREDIT UC Davis Health

Later-born siblings of children with autism spectrum disorder (ASD) or attention-deficit/hyperactivity disorder (ADHD) are at elevated risk for both disorders, a new study led by Meghan Miller, assistant professor in the Department of Psychiatry and Behavioral Sciences and at the UC Davis MIND Institute, has concluded. The findings appear in JAMA Pediatrics.

The study suggests that families who already have a child diagnosed with ASD or ADHD may wish to monitor younger siblings for symptoms of both conditions.

Symptoms of ADHD include difficulty focusing, nonstop talking or blurting things out, increased activity, and trouble sitting still. ASD, on the other hand, involves significant challenges with social interaction and communication, as well as the presence of unusual interests or repetitive behaviors like hand flapping or lining up objects.

“We’ve known for a long time that younger siblings of children with autism are at higher-than-average risk for autism, but the field didn’t have adequate data to tell whether they were at increased risk for ADHD,” said Miller. “Despite the fact that autism and ADHD appear very different in their descriptions, this work highlights the overlapping risk; younger siblings of children with ASD are at elevated risk of both ADHD and autism, and younger siblings of children with ADHD are at elevated risk not only for ADHD, but also for autism.”

Miller’s research team looked at medical records of 730 later-born siblings of children with ADHD, 158 later-born siblings of children with ASD, and 14,287 later-born siblings of children with no known diagnosis. Only families who had at least one younger child after a diagnosed child were included in the study.

“Evaluating recurrence risk in samples that include only families who have had an additional child after a diagnosed child is important because recurrence may be underestimated if researchers include families who decided to stop having children after a child was diagnosed with ASD or ADHD,” explained Miller.

Researchers found in the study that compared to later-born siblings of non-diagnosed children, the odds of an ASD diagnosis were 30 times higher in later-born siblings of children with ASD, and 3.7 times higher for a diagnosis of ADHD. Alternatively, compared to later-born siblings of non-diagnosed children, the odds of an ADHD diagnosis were 13 times higher in later-born siblings of children with ADHD whereas the odds of an ASD diagnosis were 4.4 times higher.

ADHD and ASD are believed to share some genetic risk factors and biological influences. This study supports the conclusion that ASD and ADHD are highly heritable and may share underlying causes and genetics.

Reliable recurrence risk estimates of diagnoses within the same disorder and across other disorders can aid screening and early-detection efforts and enhance understanding of potential shared causes of the disorders. The ability to diagnose ASD and ADHD early could improve both treatment and quality of life.

“There are reliable screening measures and practices for the diagnosis of autism in very young children,” Miller said. “Unfortunately, we don’t have any clinical standards or adequate tools for screening for ADHD at such young ages. We are currently working on identifying early markers of autism and ADHD in infants and toddlers who have an older diagnosed sibling, since these younger siblings are at elevated risk for ASD and ADHD.”

Posted on Multiple Sclerosis

Cocoa may help curb fatigue typically associated with multiple sclerosis

Cocoa may help curb fatigue typically associated with multiple sclerosis (MS)
Cocoa may help curb fatigue typically associated with multiple sclerosis (MS)


Cocoa may help curb the fatigue that is typically associated with multiple sclerosis (MS), suggest the results of a small feasibility trial, published online in the Journal of Neurology Neurosurgery & Psychiatry.

Cocoa, like dark chocolate, is rich in flavonoids–substances found abundantly in fruit and vegetables and associated with anti-inflammatory properties.

If the findings are confirmed in larger studies, it may offer a simple dietary approach to a persistent and hard to treat symptom, which affects nine out of 10 people with MS, suggest the researchers.

The causes of mental and physical fatigue experienced by people with MS are complex, and likely to include neural, inflammatory, metabolic, and psychological factors. None of the currently available approaches offers long term relief, say the researchers.

Previous research suggests that dark chocolate, containing between 70 and 85 per cent cocoa solids, is associated with an improvement in subjectively assessed fatigue in people with chronic fatigue syndrome (ME).

This prompted the researchers to see if it might also be worth exploring its potential in helping to tackle the fatigue associated with MS.

They randomly assigned 40 adults recently diagnosed with the relapsing remitting form of MS and fatigue to drink a cup of either high flavonoid cocoa powder mixed with heated rice milk (19) or a low flavonoid version (21) every day for six weeks.

Participants were instructed to wait 30 minutes before taking any prescribed medication or eating or drinking anything else, but otherwise to stick to their usual diet.

Fatigue and fatigability-the speed with which mental and physical fatigue set in-were formally assessed before the start, at the mid-point, and at the end of the trial.

And participants also subjectively rated their fatigue on a scale of 1 to 10, at 10.00, 15.00, and 20.00 hours each day, and monitored their activity with a pedometer.

After six weeks there was a small improvement in fatigue in 11 of those drinking high flavonoid cocoa compared with eight of those drinking the low flavonoid version.

And there was a moderate effect on fatigability, with those drinking high flavonoid cocoa able to cover more distance during the 6 minute walk test.

Those drinking the high flavonoid version showed a 45 per cent improvement in subjectively assessed fatigue and an 80 per cent improvement in walking speed.

Although not objectively measured, pain symptoms also improved more in the high flavonoid group.

“Our study establishes that the use of dietary interventions is feasible and may offer possible long-term benefits to support fatigue management, by improving fatigue and walking endurance,” write the researchers.

Given the anti-inflammatory properties of flavonoids, they could be used alongside other approaches, such as exercise, drug treatment, and physiotherapy, to treat fatigue, they suggest.

“The use of dietary approaches to reduce fatigue and associated factors in people with MS may be an easy, safe, and cost-effective way to have an impact on quality of life and independence, allowing people to feel more in control of their condition.

“A full evaluation, including wider geography, longer follow up and cost effectiveness is now indicated,” they conclude.

In a linked editorial, Dr Paolo Ragonese, University of Palermo, points out that the treatment and management of MS related fatigue “still represents a challenge…because its mechanisms are multifactorial.”

And diets rich in flavonoids are linked to longer life and a lower risk of cardiovascular disease as well as positive changes to the volume and diversity of gut bacteria (the microbiome), he points out.

“Although [this] study is an exploratory trial, it adds further interesting suggestions to the possible positive effects of flavonoid intake on the management of fatigue in patients with MS,” he concludes.