AWARENESS UPDATE: TRAVEL ISSUES

On the one hand, facts and research show that disability-friendly transportation can be hard to come by:

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While progress in improving transportation for people with disabilities has been evident in the past decade, persistent barriers remain, the National Council on Disability reports.

“Much has happened in the last decade. More people with disabilities are riding public transit than ever before and yet, in many areas, significant barriers to ground transportation for Americans with disabilities remain pervasive,” said chairman Jeff Rosen in a statement.

The report will be formally released on Monday as the national council, which advises the president, Congress and other federal agencies on disability policy, meets in Pittsburgh, part of a series of events marking the 25th anniversary of the federal Americans with Disabilities Act.

While the report praises the gains in public transit, it singled out the nascent alternative taxi industry for failing to do enough to accommodate individuals with disabilities.

“Taxi alternatives like Uber, SideCar, Lyft and others could open up exciting business opportunities and provide much-needed travel options for passengers with disabilities,” said Marilyn Golden, senior policy analyst for the Disability Rights Education and Defense Fund, authors of the report.

However, court cases and news reports “show potential customers being routinely discriminated against because of service dogs and wheelchairs,” she said.

A synopsis of the report says: “Emerging transportation models like Uber, SideCar and Lyft have vigorously resisted regulations typically imposed on the taxicab sector, harming the taxi industry and evading requirements that serve the public interest, including deficits in service to people with disabilities. Uber openly claims it is not covered by the ADA.”

The report also took Amtrak to task, saying the passenger railroad “has lagged behind in meeting ADA requirements for its stations, platforms, train cars, reservations practices and communications access.”

Spokespersons for Uber, Lyft and the railroad could not immediately be reached for comment.

Other findings as detailed in the synopsis are that ridership on traditional fixed-route buses and rails by people with disabilities has grown far faster than use of specialized paratransit services. It said “great gains” have been made in best practices for paratransit in on-time performance, telephone wait times, no-show policies and eligibility standards “but they are often not implemented.”

The council report said minimal transit service in rural and remote areas “still creates serious barriers to employment, accessible health care and full participation in society.”


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On the other hand, if you are traveling by plane, the TSA says it is there to help you:

ORLANDO, Fla. — At Orlando International Airport alone, nearly 130,000 travelers went through security checkpoints this past weekend as spring break begins in earnest.

Transportation Security Administration managers said Monday that they want passengers to know that help is available if they have special needs.

The federal agency, which checks people for contraband before they board a plane, is encouraging people to check with officers by phone or before they reach the scanning equipment if they need aid.

“We can make it very smooth for people,” said Jerry Henderson, who runs TSA at Orlando International. “It can all be arranged.”

The key, Henderson said, is to get in touch with TSA as early as possible. He recommended calling the agency at 855-787-2227 or approaching an officer at the line to talk about concerns.

Last year at Orlando International, the agency handled 1,370 assistance requests, said TSA spokeswoman Sari Koshetz.

Some typical queries, she said, are:

• Can I carry special foods onboard the plane? Yes, but they must be placed in the bin and not left in the carry-on bags. No doctor’s note is required.

• Can I get help with my child with autism, who is easily upset by lines? TSA can move the family to the front of the line.

• I have a medical condition that I do not want to publicly discuss and I would prefer not to go through the advanced imaging monitor. They can put in a written request to an officer by downloading a blue card from the TSA website.

• I wear a hearing aid. Do I have to take it off? No.

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HEALTHY LIVING UPDATE; AND...I JUST THOUGHT IT WAS INTERESTING

A NY Times healthy living columnist gives his views on a positive...and healthy...approach to eating.  I especially liked this idea:  "7. Eat with other people, especially people you care about, as often as possible. This has benefits even outside those of nutrition. It will make you more likely to cook. It will most likely make you eat more slowly. It will also make you happy."

But read on:

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Over the past few months, I’ve written a number of times on how nutrition recommendations are seldom supported by science. I’ve argued that what many people are telling you may be inaccurate. In response, many of you have asked me what nutrition recommendations should say.

It’s much easier, unfortunately, to tell you what not to do. But here at The Upshot, we don’t avoid the hard questions. So I’m going to put myself on the line. Below are the general rules I live by. They’re the ones I share with patients, with friends and with family. They’re the ones I support as a pediatrician and a health services researcher. But I acknowledge up front that they may apply only to healthy people without metabolic disorders (me, for instance, as far as I know

 

 

These suggestions are also not supported by the scientific weight of rigorous andomized controlled trials, because little in nutrition is. I’ve inserted links to back them up with the available evidence. They are not “laws” and should not be treated as such. No specific nutrients will be demonized, and none will be held up as miracles. But these recommendations make sense to me, and they’ve helped me immensely.

Full disclosure: I did not invent most of these. I’ve developed them from reading the work of others, including what may be the most impressive “official” nutritional guidelines, those of Brazil, as well as from earlier suggestions from readers, as in this great NYT interactive graphic. It captures readers’ responses to food rules by Michael Pollan. He is, of course, the promulgator of the well-known advice: “Eat food. Not too much. Mostly plants.”

1. Get as much of your nutrition as possible from a variety of completely unprocessed foods. These include fruits and vegetables. But they also include meat, fish, poultry and eggs that haven’t been processed. In other words, when buying food at the market, focus on things that have not been been cooked, prepared or altered in any way. Brown rice over white rice. Whole grains over refined grains. You’re far better off eating two apples than drinking the same 27 grams of sugar in an eight-ounce glass of apple juice.

1b. Eat lightly processed foods less often. You’re not going to make everything yourself. Pasta, for instance, is going to be bought already prepared. You’re not going to grind your own flour or extract your own oil. These are meant to be eaten along with unprocessed foods, but try to eat less of them.

1c. Eat heavily processed foods even less often. There’s little high-quality evidence that even the most processed foods are dangerous. But keep your consumption of them to a minimum, because they can make it too easy to stuff in calories. Such foods include bread, chips, cookies and cereals. In epidemiologic studies, heavily processed meats are often associated with worse health outcomes, but that evidence should be taken with a grain of salt (not literally), as I’ve written about before.

2. Eat as much home-cooked food as possible, which should be prepared according to Rule 1. Eating at home allows you to avoid processed ingredients more easily. It allows you full control over what you eat, and allows you to choose the flavors you prefer. You’re much less likely to stuff yourself silly if you eat home-cooked food. I’m not saying this is easy. Behavioral change takes repetition and practice. It also, unfortunately, takes time.

3. Use salt and fats, including butter and oil, as needed in food preparation. Things like salt and fat aren’t the enemy. They are often necessary in the preparation of tasty, satisfying food. The key here is moderation. Use what you need. Seasoning is often what makes vegetables taste good. Don’t be afraid of them, but don’t go crazy with them either.

4. When you do eat out, try to eat at restaurants that follow the same rules. Ideally, you should eat at restaurants that are creating all of their items from completely unprocessed foods. Lots and lots of restaurants do. Follow Rule 1 even while out to dinner. Some processing is going to be fine, but try to keep it to a minimum.

5. Drink mostly water, but some alcohol, coffee and other beverages are fine. As I’ve pointed out before, you can find a study to show that everything either prevents or causes cancer — alcohol and coffee included. But my take is that the preponderance of evidence supports the inclusion of a moderate consumption of most beverages.

6. Treat all beverages with calories in them as you would alcohol. This includes every drink with calories, including milk. They’re fine in moderation, but keep them to a minimum. You can have them because you like them, but you shouldn’t consume them as if you need them.

7. Eat with other people, especially people you care about, as often as possible. This has benefits even outside those of nutrition. It will make you more likely to cook. It will most likely make you eat more slowly. It will also make you happy.

I’ve avoided treating any food like the devil. Many nutrition experts do, and it may turn out they’re right, but at this point I think the jury is still out. I’ve therefore tried not to tell you to avoid anything completely. My experience tells me that total abstinence rarely works, although anecdotes exist to support that practice. I think you’ll find that many other diets and recommendations work under these rules. These are much more flexible and, I hope, reasonable than what some might prescribe.

All of these rules are subtly trying to get you to be more conscious of what you’re eating. It’s far too easy these days to consume more than you think you are, or more than you really need, especially when eating out. I’ve found that it’s impossible to tell any one person how much they should be eating. People have varying requirements, and it’s important for all of them to listen to their bodies to know when they should eat, and when they should stop.

MOEBIUS ADULTS: WE NEED YOUR INPUT

As many of you might recall, the Moebius Syndrome Foundation has created a new position.  The MSF Board has voted to create the office of Board liaison to the Moebius adult community.  I am pleased to announce that the Board voted to have me be that liaison.

We did this for a few reasons.  We believed that there were those in the Moebius adult community who would like to have more interaction with the Board and what it does.  Plus, we believed this was a good idea--to reach out more to Moebius adults and to find out what they are thinking.

We envision the liaison then as doing the following: first, he will periodically reach out to the Moebius adult population via social media--for example, through Facebook.  I will ask what adults are thinking about, what issues are important to them, what we as a foundation can do better, and so forth.  We will also, every three months or so, have conference calls on which any Moebius adult who wishes to can participate.  This will be via a toll-free number which we will provide to participants.  I and (when possible) other MSF Board members with Moebius will also participate in those calls.  We plan for these to last perhaps an hour or so, and of course all callers who wish to speak will be given the chance to do so.

I will then, every month or so (or more often if necessary) compile the feedback I have received in regular reports to the Moebius Syndrome Foundation Board.  The liaison will simply report to the Board the feedback he's been given.  He will not censor it or edit it.  If a Moebius adult has something that he or she wishes to say to the Board, the Board will receive it.

In addition of course, that having been said, it will then be up to the Board to decide what to do, if anything, with the feedback it receives.  The Board has many things to consider, it has many points of view to take into consideration, and often it has difficult and complicated decisions to make.  The Board hopes that everyone in the community will always keep this in mind.

But also, the Board wants to hear from you.  That is why it has named me as this liaison.  And it will take all of the feedback it receives seriously.  So therefore I want to hear from you.  Let me know what you are thinking, and what is important to you. 

And now, I am also glad to announce that our first conference call, for any Moebius adults who would like to participate, will be coming up soon. We will have our first call this coming Wednesday, May 6th. The call will begin at 8:00 pm east coast time; that's 7 pm central time (and Texas time!; 6 pm Mountain time; 5 pm West Coast time. All you need to do is either message me on Facebook, or e-mail me (ksmant@gmail.com) and I will let you know what the number is to call, etc. If you have Moebius friends who are not on Facebook who might like to participate, please let them know, too. Thanks everyone--we want you involvement and your feedback!

YOUR DOCTOR VISIT? IT'S GOING ELECTRONIC

I thought many of you in the community would find this interesting.  Many of us who have Moebius, and many of you Moebius moms and dads, do have to make more doctor visits than do some folks.  Having Moebius can mean that more physical problems crop up; and so that can mean more trips to the doctor.  But now, you might message your doctor a question electronically, with he or she answering you the same way, rather than seeing the doc face to face; or, your visit with the doctor might be via video; or, you might go online to find medical information, rather than visiting a doctor's office.

Is this a good thing?  Certainly sometimes it can be, when you need information quickly.  Is it always a good thing?  Maybe not; sometimes I suspect those of us in the Moebius community need to see our physicians face to face, and they need to see us that way too, to really get to know us and understand our condition.  But things are changing.  Read on:

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Thanks to technology, Gary Sullivan enjoys a new kind of relationship with his doctor. If he wakes up with a routine health question, the 73-year-old retired engineer simply taps out a secure message into his doctor’s electronic health records system. His Kaiser Permanente physician will answer later that day, sparing Sullivan a visit to the clinic near his Littleton, Colo., home and giving his doctor time to see those with more urgent needs.

Once you took medical questions directly to your doctor, who advised, tested and treated you. Today, not only are we turning to the Internet for everyday medical information, we’re also generating our own health data: using a smartphone, for example, to investigate a child’s ear pain or monitor blood pressure. We’re learning from our peers online how to cope and find new treatments. Our doctors can keep our records electronically, accessible to us through a patient portal. Some of us can make video visits with doctors, who can offer diagnoses and treatment plans via computer or smartphone.
With all these advances, a traditional paternalism in medicine is changing, too.
“There’s no question that technology is shifting the doctor-patient relationship,” said pediatrician Wendy Sue Swanson, executive director of digital health at Seattle Children’s Hospital.

Susannah Fox, entrepreneur in residence at the Robert Wood Johnson Foundation, describes a “sea change in communications” over the past 15 years.
“Consumers only used to get a filtered drip of information,” she said. “What the Internet did was pull open that funnel and give people more access — not complete access — to health information.”
Almost three-quarters of American adults use the Internet to search online for health information each year, according to the Pew Research Center. While patients are digging through new information, so are doctors. A “tsunami of knowledge” from hundreds of journals pours over doctors, says Jack Cochran, executive director of the Permanente Federation.
All this information changes the culture. “Doctors say they’re taught to know things that others don’t,” said Dave deBronkart, a cancer survivor and advocate for patient engagement. Today, thanks to online searches and communities, a patient may know about advances before a doctor does.
Where this reliance on the Internet will lead remains unclear, and the technology has not been perfected. More than a third of consumers experienced gaps in their electronic health information, such as test results or history that were not available at a medical visit, according to a 2014 government brief. The health-care system is still far from fully connected by computer, and doctors can be swamped by data.
“We are unfortunately at a very awkward stage where we have a lot of technology at our fingertips, and health care has not quite figured out how to use it,” Fox said.

Plugged-in doctors

There’s probably a computer or tablet in the exam room at your doctor’s office. In 2001, 18 percent of doctors used electronic health records systems. Today, about two-thirds of doctors and most hospitals use them. This change was propelled, in large part, by a program from the stimulus act of 2009 that has invested $29.6 billion as of February 2015 to help Medicare and Medicaid providers convert to and use digital records.“It is your data; you control it. You have the right to see it in an electronic form,” said Karen DeSalvo, national coordinator for health information technology in the Department of Health and Human Services.
“People need to ask for it. Some people feel that they don’t want to bother the doctor or bother the hospital. . . . And sometimes the systems make it hard to get.”
The availability of electronic health records and consumer resources “changes the power relationship” between doctors and patients, DeSalvo said. “It’s a leveler in many ways.”
Half of patients now have online access to their health information, according to a recent online poll commissioned by the National Partnership for Women & Families. And a majority want, like Gary Sullivan, to be able to message their doctors.
Not only should you read your electronic health record, you should check for errors. “Most people’s records contain mistakes,” deBronkart said. His 2009 blog about mistakes in his Google Health record led to a front-page story in the Boston Globe and a career as an advocate known as e-Patient Dave. (Google Health, a free service intended to help consumers pull together medical and wellness information, was discontinued in 2013 because it failed to generate broad interest.)

The eye-contact issue

Doctors sometimes spend more time looking at the computer than at the patient during an appointment, which makes personal medicine much less personal, said Enid Montague, an assistant professor of engineering and medicine at Northwestern University. Strategies such as turning the screen toward the patient and discussing what’s being typed improve the interaction.

Computers can frustrate doctors. DeSalvo notes that some electronic health systems are still clunky — designed for billing, not caregiving. Doctors can feel burdened by documentation and making the best use of computers.

The possibilities of digital records are apparent with OpenNotes systems, in which patients can see not just lab results and tests but also the full notes their doctor made from a visit.

OpenNotes began in 2010 as a research project involving 105 doctors and 19,000 patients at three sites. Physicians initially worried that the open information would lead to confusion for the patients and more work for the doctors, but a study found that about three of four patients in the project reported feeling more in control of their care. They understood their conditions better and felt more likely to take medicines as prescribed. Now, nearly 5 million patients across the country have access to OpenNotes.
Much of the information collected in your annual exam can be generated by your smartphone, says cardiologist Eric Topol in his book “The Patient Will See You Now: The Future of Medicine Is in Your Hands.” His patients are proof: Many carry a small sensor they can put on their fingers that will transmit to their smartphones and produce cardiograms in an app.
“The willingness to accept technology is going to have an ever-increasing role, and we’re not going to lose the patient bond but we’re going to remodel it and make it better,” said Topol, director of the Scripps Translational Science Institute in La Jolla, Calif.

Smartphone as health hub

In his book, Topol catalogues a wide array of functions that a smartphone-as-hub can handle now or in the near future. Biosensors capture data including blood pressure, heart rhythm, respiration rate, glucose rate, brain waves and more. The selfie of the future will be medical imaging, including high-resolution ultrasounds or X-rays. The smartphone’s microphone can capture data about lung function or mood. Smartphones might also be able to track nanochips that would be embedded in the bloodstream to monitor tumor DNA or genomic signals of heart attack or stroke.
Seven of 10 of us track at least one health indicator such as weight or blood pressure, according to Pew Research. Thanks to self-monitoring technology, Gary Sullivan, the retired engineer, was able to identify a problem with his diabetes treatment. He had been part of a Kaiser Permanente pilot program that allowed him to connect his glucose monitor to his computer to generate data for his care management team and for himself. After he’d lost weight from a fall, Sullivan realized his readings seemed off. He contacted his care managers and quickly got his insulin readjusted.
“Having the technology side of it, loading it on the computer and seeing it on a graph is real positive reinforcement that we need to make a change,” Sullivan said.
Not every patient is interested in taking digital charge of his or her health. There are three kinds of patients, says Montague: those who view the health-care system as a manufacturing plant in which they’re just cogs going through; those who seek information and want to share in the planning; and those who want to drive the decisions themselves.
“It’s . . . not a silver bullet,” said the Permanente Federation’s Cochran. “Giving a patient a smartphone doesn’t automatically make them motivated. It’s not like a vaccine. It’s about how do they use it, what do they learn, what do they learn over time.”

A less formal relationship

With her patients seeking health information from so many sources, Seattle Children’s Hospital’s Swanson recognizes that her role has changed: “The role that the physician plays has to transform from teach and preach to really thinking about how do I curate health information for the family that is with me for less than 1 percent of their life,” she said
Sullivan likes his new relationship with doctors. “I don’t have this feeling like doctors are way elevated, and you just don’t ask them anything. . . . Now it’s more of a conversation mode with doctors,” he said. “It’s just a less formal relationship with the medical folks, and I think that leads to a much better situation.”

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TUESDAY'S TRAVELS...

...across the world of special needs and differences.  Our travels bring us several news updates today.  For example:

1] Research shows that prodigies and persons with autism share a genetic link:

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Researchers at Ohio State University and Nationwide Children’s Hospital have found a genetic link between people with autism and prodigies.
The link shows up as a marker on one of the 23 chromosomes humans have and could provide more clues about how autism and prodigy develop in children.
The finding could help scientists understand autism. And down the road, it could help geneticists understand how to block autism from manifesting in children.
“It suggests that there’s something we might want to look at,” said Christopher Bartlett, a co-author on the study and principal investigator at Nationwide Children’s Hospital in Columbus, Ohio. “It doesn’t mean it’s going to pan out.”
Their findings were published online last month in the journal Human Heredity.
Joanne Ruthsatz is lead author on the study and a psychology professor at OSU’s campus in Mansfield, Ohio.
She became curious about a potential link when she was interviewing prodigies and their families for a book coming out this fall. Prodigies are children who develop professional-level skills before they hit puberty.
Ruthsatz had been with a child prodigy at a McDonald’s near his home, and they’d run into the child’s aunt and first cousin. The child’s cousin had severe autism, she said. “I thought, ‘What is the chance of his first cousin having autism?'”
Prodigies typically have exceptional working memories and exceptional attention to detail, Ruthsatz knew, characteristics they share with some people with autism. She wondered whether the two conditions could be related.
So she interviewed other prodigies’ families and learned that autism had been diagnosed in many of the prodigies’ siblings or first cousins. That’s when she joined with Bartlett and other OSU researchers to study the families’ DNA.
Ruthsatz collected saliva samples from the prodigies, their relatives with autism and relatives who were neither prodigies nor on the spectrum. The research team tested the DNA and found that prodigies and their relatives with autism both have a marker on chromosome 1 that other relatives don’t have.
The researchers don’t know exactly what the marker is or what it means — this study was relatively small, covering only 11 families — but they are conducting a larger study now.
Ruthsatz said she wonders if something about the prodigy gene keeps autism from manifesting.
Bartlett said he hopes the study will encourage people with autism and their families.
“To me, the hope doesn’t necessarily come from the finding,” he said. “To me, the hope comes from the fact that the scientific community has not forgotten that people with autism need help and that research needs to be done in this direction.”

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2] Sadly, at the same time, many young people with autism are struggling right now:

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Young adults with autism are facing significant challenges after high school, a new report suggests, with many on the spectrum finding themselves unemployed, isolated and lacking services.
More than a third of those with autism don’t work or continue their education in their early twenties, a circumstance shared by fewer than 8 percent of young people with other types of disabilities.
Meanwhile, 26 percent of young adults with autism receive no support services at all.
The findings come from a report this week from Drexel University’s A.J. Drexel Autism Institute based on data collected in two nationally-representative government studies — the National Longitudinal Transition Study-2 and the Survey of Pathways to Diagnosis.
The 68-page National Autism Indicators Report paints a stark picture of a group of young people with little support.
Just a third of young adults with autism had ever lived apart from their parents and roughly 1 in 4 were socially isolated, having received no invitations for social activities within the past year, the report found.
Some 58 percent of those on the spectrum had worked for pay by their early twenties — a rate lower than individuals with other disabilities — and their jobs were typically part-time and low paying, the findings indicate. About a third engaged in postsecondary education.
Relatively speaking, however, researchers said that little is known about how adults with autism are faring and how to best meet their needs.
“While the picture looks bleak, we found that some of those who have the most significant levels of challenges do go on to find jobs and attend further education,” said Paul Shattuck, an associate professor at Drexel who worked on the report. “A critical next step is to figure out what facilitates connections to outcomes and what helps people to continue to succeed across their early adult years.”

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3] But if your child has autism, and if you are able to get some training, that might help with your child's behavior problems:

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Parents of children with autism could see vast improvements in behavioral troubles, including severe tantrums, if they learn and use techniques to help their children cope with the challenges of the disorder, according to new research.
The study, which was published online Tuesday in the Journal of the American Medical Association, is the largest randomized, multi-center study to analyze the impact of behavioral training.
The study included 180 families with children with autism 3 to 7 years old. Half of the kids’ parents were given one-on-one therapy, coaching and homework to help them learn behavior modification techniques.
Those techniques included such things as using timers to help children understand and respect rules and showing pictures to help them visualize positive behavior (such as using the bathroom properly).
The control group of parents received education only, which included information about autism without offering techniques to help manage undesirable behavior.
After the 24-week trial concluded, the researchers asked parents how things were going at home.
Disruptive behavior dropped by almost 48 percent in the training group and 32 percent in the education group, according to parent ratings.
An independent expert who evaluated the children (and didn’t know which group their parents were in) found that 70 percent of those in the behavior training group showed a positive response compared to 40 percent in the control group.
“These behavior problems are quite challenging to manage for parents,” said Luc Lecavalier, a professor of psychology and psychiatry at Ohio State University’s Wexner Medical Center who led the research there. The site was one of six U.S. medical centers that participated in the study.
“They’re also quite costly to society because a lot of resources go to managing these children,” he said.
Kerri Doyaga of Bexley, Ohio went through the parent training — which included at least 11 in-person training sessions, telephone follow-ups and two home visits — and said it led to profound changes for her son Benjamin, who is now 7 and in first grade.
“The classes were life-changing for us, not only for Ben but for my other two children. They gave me great skills,” Doyaga said. “It helped me to understand what he was going through.”
Ben’s frustration and tantrums turned around when Doyaga and her husband, Justin, learned how to help their son with techniques including using pictures to guide him through such things as getting dressed, she said.
They used to miss birthday parties or scrap plans to go to dinner when Ben would become upset. Now, they can go as an entire family and Ben enjoys himself, too, she said.
“He is like a different kid. We go to parties. We go out to dinner. We do everything,” Kerri Doyaga said. “We don’t even think twice where before we would have had a conversation about not doing this or splitting the family.”
Lecavalier said he and the rest of the research team were thrilled to see such a significant response in the intervention group as well as interest in the benefits reported by the control group. While that group didn’t learn about behavioral interventions, basic support and education about autism seemed to make a significant difference.
“The idea here was to teach the parents how to intervene instead of relying on more costly interventions that would be implemented by professionals,” he said.
“We talk about how to praise and reinforce a behavior or ignore inappropriate behaviors … then we teach parents how to maintain the gains and involve different caregivers.”
Lecavalier said there’s promise in finding a way to disseminate the training program and find an affordable way to make it widely available.

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But remember--autism is sometimes, but is by no means always, associated with Moebius Syndrome.

I JUST THOUGHT THIS WAS INTERESTING DEPT

Because certainly some (though not all) persons with Moebius Syndrome sometimes are a bit introverted, I thought I would share this--the 12 things all introverts wish you understood about them:

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Sympathetic articles, books and lectures aside, introverts -- or those with the so-called "quiet" personality type -- may still feel misunderstood in a society that champions extrovert traits like non-stop connectedness.

We rounded up expert insight and responses from The Huffington Post's social communities on the biggest sources of misunderstanding for introverts. Below are just a few things they wished everyone grasped about the personality type.


1. They don't hate a good party.
Introverts aren't a bunch of awkward killjoys who don't like to have a good time. In fact, many introverts enjoy going to parties if it means interacting with people who make them comfortable.
What can be so grating about large gatherings is the overstimulation and unsatisfying conversations. As Laurie Helgoe explained in her book, Introvert Power: Why Your Inner Life Is Your Hidden Strength, introverts feel exhausted by small talk and prefer more intimate conversations.
"Let's clear one thing up: Introverts do not hate small talk because we dislike people," she wrote. "We hate small talk because we hate the barrier it creates between people."
2. Craving downtime doesn't mean they're anti-social.
Introverts need time to recharge, but they still want to be with their friends after they've snagged that alone time. They're not anti-social; they're selectively social.
"Just because nine times out of 10, I decline your invitation, does not mean I want you to stop inviting me," said reader Carolyn Mae Ladas on Facebook.
3. They're not open books (and that's perfectly okay).
Introverts rarely spout off the first thing that comes to their minds. This quiet reflection is a hallmark characteristic of the personality type and is quite the opposite of their extroverted counterparts, who speak their thoughts affirmatively and quickly.
"I wish people could understand that I don't feel their need to over share every little detail of my life," said reader Claire May Sarlandie-Partiot on Facebook. "If I want to talk about it, I will. If I don't, don't push me. It will only make me close like an oyster."
4. Personal space is highly valuable to them...
Introverts are more likely to opt for the aisle seat rather than the middle to avoid being surrounded on all sides, HuffPost's Carolyn Gregoire previously reported. This allows them an opportunity to remove themselves from a situation in order to recharge if they need to.
5. ...But yes, they'll give you a hug.
You just have to ask them first. A comic designed by artist Roman Jones sums up an interaction with an introvert perfectly: Let them invite you into their "bubble."
6. Just because they're introverts doesn't meant they're shy...
Shyness and introversion are often used synonymously, but as introverts are quick to point out, they're not the same thing. Introverts don't always fear social settings, they just place value in more meaningful, smaller interactions -- and they're perfectly fine with remaining in that comfort zone.
"My shell is comfortable, and because I like staying there doesn't mean I'm shy," explained reader Jeremy Flowers on Facebook.
7. ...Or stuck up, for that matter.
A quiet demeanor does not equate to a haughty attitude. When introverts don't overly contribute to a conversation, it's usually because they're being more observant than participatory.
"Me being quiet has nothing to do with you. It doesn't mean I am being rude, it doesn't mean I am snobby... It's nothing I can control and though I am very aware of it, I can only push myself so far until I'm past uncomfortable [and] tolerable," said reader Brittany Pettus on Facebook, adding that she's even been called names for being quiet.
8. They don't want to be more outgoing.
Many people look at introversion as a character flaw, when in reality, introverts like their quieter demeanor -- and have no interest in changing.
"The cure for being an introvert is not to become an extrovert. Some of us would never want to be extroverts," said reader Lori Armstrong on Facebook.
9. They approach the workplace differently.
Introverts are typically averse to open office plans and sometimes can experience challenges navigating an ideal working environment. Finding quiet spaces, only attending crucial meetings and having routine check-ins with co-workers can help ease those office roadblocks, according to Susan Cain, author of Quiet: The Power Of Introverts In A World That Can't Stop Talking.
"I tend to shrink back in work meetings where multiple people are brainstorming out loud, but that doesn't mean I don't care about the topic being discussed or that I'm not paying attention," explained reader Marisa Hoheb Fedele on Facebook. "I just need some quiet alone time to mull over my thoughts before I present them to a crowd."
10. They're not the biggest fans of phone calls.
When looking for a technology-driven conversation, opt for a typed message (bonus: there's even a set of texting emoji on the horizon made specifically for the personality type). Out-of-the-blue phone conversations tend to feel intrusive to introverts, which may result in them screening your call.
"Talking on the phone can be a form of torture. I choose to engage via text or chat for a reason," said reader Cindy Spreg on Facebook. "Please don't take offense that I'll text you back rather than call you. It's not you, it's me!"
11. Surprise birthday gatherings are the worst.
Big parties where introverts are the center of attention = A big no-no.
"I do NOT want a large birthday party!" reader Jackie George explained on Facebook. "I'd much rather have my few close friends for a quiet evening of games, wine and conversation than have a room full of people I barely know centered around me. Ack!"
12. They have an intuitive nature.
Introverts tend to be in tune with their surroundings, and as a result they may pick up on subtleties of conversations and moods that their louder counterparts may not notice.
"Introverts are very observant," explained reader Cora Donnell on Facebook. "If we don't like your friends it's because we can see through their act."

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BECAUSE THE DIFFERENT ARE JUST AS VALUABLE DEPT

A girl born without feet.  A puppy born without a paw.  Now they are together and again reminding the world that those who are "different" are just as valuable:

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Sapphyre has been a patient at the hospital since she was just three months old.
"When I was seven months pregnant, they did an ultra sound and told us she may be missing some fingers and toes," her mother, Ashley Johnson said of the birth defect that also left the child missing fingers.
"They don't know what caused it," she added. "But she had just two really long toes on each foot. And when she was 1, we had them amputated so she could be fitted for prosthetics."
And Shriners, which provides specialty orthopedic services to children up to age 18 regardless of ability to pay, has offered to make a prosthetic foot for Lt. Dan as well when he's big enough, officials said.
"The first time I showed her a picture of the dog, she looked at it for a moment, and she said, 'That's my puppy. He's just like me,' " said Shriners child life specialist Elaine Hardin. "He's a special dog and he's going to a special child."
The dog will help Sapphyre make friends and explain her disability to other children, Hardin said.
"In the future, I could see Sapphy at her first show-and-tell in school and she could bring in her dog and explain about her dog and herself," she said. "Everybody loves dogs and they'll want to know about her dog that's special like her."
Lt. Dan will be someone for Sapphyre to talk to, to help her exercise and motivate her to move, she said.
Although on Monday, she didn't need much motivation to run around the Shriners playground with her new pup, calling out, "Lt. Dan, Lt. Dan."
After so much excitement, the pup, who will one day grow to be up to 90 pounds, fell asleep in the car as the family made their way back home to Tennessee.
"I think it's wonderful that she (Riddle) would want to do that for somebody," Ashley Johnson said. "We'll have a nice quiet evening just getting to know each other."

Lt. Dan might have met a different fate in other circumstances.
But his owner, Karen Riddle, knew the white German shepherd puppy born with just one front paw was meant for something special.
And on Monday, the nine-week-old found a new home with Sapphyre Johnson, a toddler who lost both feet.
"A lot of kids don't see other children or animals that have issues like they have," said the 3-year-old's father, Matthew Johnson, beaming as he watched his little girl toss a squeaky toy to the pup.
"This was a really nice thing," he said, "and a really good thing for Sapphyre."
Of the nine pups in the litter, Lt. Dan, named for the character in Forest Gump who lost his legs, was the only one missing a paw, Riddle said.
When other breeders suggested she put him down, she knew that was never a consideration. Many of her dogs have become therapy dogs or gone to people with special needs, she said.
Instead, the Greenville woman began looking around for special child or wounded veteran with whom the sweet bundle of fluff could find a home, and his special purpose.
"So I decided to call Shriners Hospital," said Riddle, whose father was a Shriner.

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