All About Autism

National Direct Support Professional Recognition Week, September 11th – 17th, 2016. You’re probably wondering who that person is, as it is not a commonly heard job description. However, the persons in this role make a critical difference in the lives of children and adults with disabilities.

20 years ago, a person might have been called “Aide” or “Paraprofessional.” Today, they are most commonly referred to as “Direct Support Professional.” Regardless of their title, the job description is typically the same:

A direct support professional is a person who assists an individual with a disability to lead a self-directed life and contribute to the community, assists with activities of daily living if needed, and encourages attitudes and behaviors that enhance community inclusion. (Source) https://en.wikipedia.org/wiki/Direct_support_professional

Direct Support Professional Recognition Week is part of the American Network of Community Options and Resources (ANCOR) National Advocacy Campaign, whose mission is to enhance the lives of all people with disabilities who rely on long-term supports and services by obtaining the resources to recruit, train and retain a highly qualified and sustainable workforce.

Individuals in this position may have a high school degree or beyond, but what makes them unique is their commitment to assist and support persons with disabilities, which is not always an easy job. Many of our individuals require a direct support professional to be with them 24/7, including holidays. A DSP receives intensive training during orientation and learn about the individual(s) he or she will be working with (likes, dislikes, strengths, challenges).

At the Barber National Institute, Direct Support Professionals are an integral part of our team. They support our fundamental belief that learning is a lifelong process, and that all individuals should be provided the opportunity to reach their greatest potential.

People who need support are more likely to fulfill their life dreams if they have well-trained, experienced, and motivated people at their side in long-term, stable, compatible support relationships. These are the people who we hire as Direct Support Professionals. DSP Recognition Week is just one of the many ways we try to say “thank you” to the people who provide opportunities for people with disabilities – They are truly “Making Dreams Come True!”

This past Saturday was our fourth annual “Barber Beast on the Bay.” For those readers who are not from the Erie area, the Beast on the Bay is an adventure obstacle course challenge that includes natural and manmade obstacles on Presque Isle State park. The annual event helps support the Barber National Institute and its work with children and adults with disabilities and behavioral health challenges.

What even local readers may not know is that in addition to the 10 mile obstacle course, we also offer a one-mile adapted course will also be offered for adults (age 16+) with physical or intellectual disabilities at adjacent Waldameer Park.

This year we had a record number of individuals complete the adapted course. Participants are welcome to have a course buddy to go through the course with them at no extra charge. The adapted course is one of the highlights of the Beast event; it’s a wonderful opportunity to showcase how important inclusiveness and equal opportunity are to our mission.

I think that challenges like this are a great moral booster for schools and organizations nationwide. Many groups offer 5K runs in honor of a disability, but few offer the opportunity for those with disabilities to participate in their own cause. I would encourage any group to consider an obstacle course similar to the adapted Beast for their own fundraising efforts, which is why I would like to share some of our obstacles as examples that could even serve as a model for your own “Beast!”

“Feed the Beast”

In this obstacle the participants stand a few feet in front of two hand painted boards, one deigned to look like “the beast” and the like a scary pirate, with sections cut out for participants to throw bean bags through the holes.

“Beast Cave”

This obstacle was a 10-foot high structure that the participants had to go through the middle of. Inside, there were different weighted bags that hung from the ceiling. Participants had to push these bags out of the way to get to the other side.

“The Watering Hole”

This obstacle was in the in the Waldameer Wave Pool. Participants can either enter the wave pool or stay on shore if they do not want to get wet. The object is to throw a beach ball in to a hoop to score a point. After scoring, participants use water shooters and attempt to get the volunteers wet!

Of course, none of this would be possible without great support from our community. The Beast on the Bay had over 200 volunteers helping throughout the day, from setting up and tearing down, to cheer teams on the sidelines, water stops, and of course assisting on the obstacles themselves. It is truly a wonderful team-building event for all!

The 5th annual Barber Beast on the Bay is set for Saturday, September 9, 2017 at Presque Isle State Park in Erie, PA. We hope to see you there, or hear of your own “Beast” happening in your town!

Ryan, with friends Bryant and Craig, beat the Beast in 3 hours this year!

It seems like childhood obesity is a topic that is mentioned again and again in the media. But unfortunately, it continues to be a topic that is critical for us to discuss, considering more than 23 million children and teenagers in the United States are obese or overweight. What is even of greater concern is that obesity rates for children with disabilities are approximately 38% higher than children without disabilities. With statistics like these, it is essential to make this a frequent topic of conversation. 

As September is “National Childhood Obesity Awareness Month,” I thought I would share some ways that all of us as parents or caregivers can help prevent obesity and support healthy growth in our children.

Maintaining a healthy weight has two primary components: engaging in regular physical activity and making healthy eating choices.

The CDC recommends 60 minutes of physical activity a day. To meet that goal, encourage your child to participate in a variety of physical activities. Some children enjoy team sports, while others prefer to do activities on their own. Regardless, there are nearly limitless ways to be active – just take the time to figure out what your child enjoys so that he or she will be more likely to exercise.

The USDA food pyramid is still generally considered to be the best measure for a balanced diet. Some easy suggestions for meeting those guidelines are:

• Always provide healthy food choices such as fruit and vegetables at meals and as snacks
• Offer water as a no-calorie alternative to sugar-sweetened beverages
• Eat moderate portions

Unfortunately, some medications can contribute to weight gain and physical limitations can reduce a child’s ability to exercise. There is no easy fix for these restrictions, but I would suggest you talk to your physician as well as your child’s team at school for their suggestions and ideas on these challenges.

Of course, regular sleep is also an important component of being healthy. In addition to maintaining a healthy weight, sleep is proven to improve memory, reduce inflammation, improve grades, and sharpen attention, among other benefits.

On a personal note, Ryan’s exercise regimen began when he was seven. Today, Ryan knows that he feels better when he exercises, so he is the one to wake me up at 5:30 AM to go to the gym … and I’m the one who needs the push to get out of bed! Ryan and I worked for many years to establish a regular pattern of exercising and healthy eating. It’s rewarding to see that Ryan now has adopted these habits and independently makes the “right choices.” I’m so proud of him!

Scientists and researchers are constantly uncovering more information related to autism, offering insights into the origins, possible causes and even at times potential cures. I come across dozens of articles on a weekly basis, some of which seem more important than others. I thought I would share on a monthly basis stories that caught my eye.

 ~ Maureen

Epilepsy in family members raises risk of autism

A study in Sweden states that people with epilepsy are at eight times the risk of autism as the general population. Siblings and children of individuals with epilepsy are also at an increased risk. The findings, which appeared in June in Neurology, lend credence to the idea that autism and epilepsy share genetic roots. Among some individuals with epilepsy and their relatives, a second genetic ‘hit’ or environmental trigger may tip the balance toward autism.

Read the full article here.

https://spectrumnews.org/news/epilepsy-in-family-members-raises-risk-of-autism/

 Insurance Mandates Boost U.S. Autism Diagnoses

                More U.S. children are getting diagnosed and treated for autism in states that require commercial health insurers to cover these services, a new study finds. Fifteen years ago, Indiana was the first state to mandate that commercial health insurers cover behavioral treatments for autism. Since then, 43 other states have also made autism treatment more accessible to families that couldn’t afford it.

Read the full article here.

http://health.usnews.com/health-care/articles/2016-07-11/insurance-mandates-boost-us-autism-diagnoses

 Diabetes drug counters weight gain associated with autism medicines

In a small new study, a commonly used diabetes drug curbed the troublesome weight gain that is a common side effect of the only two medicines approved for reducing agitation in children and teens with autism. The promising results of the study appear in the latest issue of JAMA Psychiatry. Risperidone (brand name Risperdal) and aripiprazole (Abilify) are the only medicines approved by the U.S. Food and Drug Administration for reducing agitation and irritability in children with autism spectrum disorder (ASD). These medicines become important when serious agitation – including aggression – does not respond to non-drug, behavioral therapy. However, both risperidone and aripiprazole commonly produce significant weight gain – a worrisome side effect given obesity’s many associated health risks.

Read the full article here.

https://www.autismspeaks.org/science/science-news/diabetes-drug-counters-weight-gain-associated-autism-medicines

Tune in next month for an update on autism research!

I came across a guest post written by Catherine Fozard, a woman who was diagnosed with ASD at 31. The experiences that she shares are frustrating yet also compelling. She encountered mis-diagnosis, mis-information, and mis-understanding for too many years. 25 years ago, a diagnosis of autism was seldom given to anyone, let alone a girl. I, too, remember when Ryan was three years old and a psychiatrist, who was reviewing his eligibility request, said: “He can’t have autism – he talks in sentences.” I was shocked that a professional in the field would believe such a statement! Fortunately, these comments (I hope) don’t occur in today’s well-informed society.

Sesame Street deliberately chose to make their new character with autism a girl, hoping to bring greater awareness to the differences between boys and girls on the spectrum.

Still, we know that some misconceptions continue. There is a need to expand our knowledge about autism as it relates to girls. For Women’s History Month, I wrote a blog on why girls with autism are diagnosed later, and less frequently, than boys are. (You can read the full article here.) We know that ASD is about 4.5 times more common among boys (1 in 42) than among girls (1 in 189), but in fact we have little understanding of the roots of these differences.*

Part of what I found so moving in Fozard’s article was her challenge to us to help create more awareness of the struggles of girls with autism and the adversity they face every day, in the hope that we can create a better support system for them. As she says, “the world is hard enough without having to go it alone.” I was fortunate not to have to “go it alone” because of my network of family, friends, and supporters who walked with me on my journey with Ryan. And yes, the journey continues!

Read Fozard’s complete article here: https://www.autismspeaks.org/blog/2016/07/20/invisible-girls-autism-spectrum

*Source: http://www.cdc.gov/ncbddd/autism/data.html

I’m often asked for some tips that helped Ryan and I prepare to go back to school. Below are several of the strategies that we learned over the years. I hope they help both you and your child prepare for this momentous day and make the year a successful day!

Establish a file for the new school year.

As most of the material you’ll be receiving from school will be paper, it is helpful to create a space to organize daily notes, progress reports, report cards, IEPs, and the multitude of paperwork that you receive throughout the year. I had a file drawer that was “Ryan’s” and in it I kept separate folders for each of these types of information by school year. This is a sure way to easily access a file or report whenever needed. I recently went through these files at home in an effort to declutter. I still had notes from kindergarten!

Decide how you wish to communicate with the teacher(s).

Email, paper, phone calls, and meetings are all important and require documentation. I always met with the teacher at the beginning of the year to find out what system worked best for him or her. I found this to be extremely helpful to allow for consistency between home and school. If possible, give the teacher and your child the opportunity to get acquainted. I also found it helpful to provide a handout describing what teaching methods and behavioral strategies work the best for your child. I titled this sheet “What Works for Ryan” and listed bullets of what did and did not work for Ryan.

Establish a before and after school routine.

Waking up, getting dressed, eating breakfast, waiting for the bus… these are all things that need to occur seamlessly each morning. Similarly, there are a number of activities that need to occur each night. Bus drop off, homework, exercise, dinner, bedtime routine… you will know what activities are on your list, but by establishing a set routine you will make your life less stressful.

Introduce a new environment beforehand.

If your child is going into a new school or will have a new teacher, have a discussion or even write a social story as a way to introduce these new ideas and give your child time to process.

Take time to mentally prepare yourself as well.

The beginning of the school year can be an anxious and stressful time but it is essential for you to remain positive and calm, so that your child does not pick up on your anxiety. Perhaps the previous year was a challenging one, but by setting a positive tone for the new school year, this will help your child to approach it positively as well.

Plan a fun activity in September.

Give your child something to look forward to, particularly if they are anxious about the new school year. This can help them to stay motivated and positive.

Are there any tips for transitioning back to school that you’d like to share below? I would love to hear them!

I have written a number of blogs on the challenges of living with autism as an adult, so I looked forward to seeing the PBS NewsHour special which aired last night: “Giving adults with autism the skills to build independent lives.” (Watch it here) The program focused on the First Place Transition Academy in Phoenix, AZ. This is a pilot program, serving 9 men with autism, which promotes independent living through teaching the skill sets needed to be successful. There’s also a focus on employment. Lessons include: how to ride the bus (travel training), where to find utensils in the kitchen, budgeting, how dress appropriately for work… etc. Although as the reporter said these skills may seem “mundane,” they are paramount to independent living.

These 9 men also live together, which offers them a chance to build friendships and as a result, function as a community. Watching the video, I thought, “Wow. This is truly incredible. Why aren’t there more of these initiatives across the country?” As I researched more on Transition First, I found the answer: to live in one of these apartments costs a staggering $3500 a month – and that’s just for the tuition for the training program. To rent the apartment can cost anywhere between $2900 and $3200 a month.

Sadly, I feel – as I’m sure most of you reading this will – that those figures are unreachable for most families. What wasn’t clear was does the state of Arizona provide any financial support for families? Certainly, if programs like this are to become viable and available across our nation, there needs to be increased funding available for adults living with autism. And of course, that begins with raising awareness that autism is a lifelong disability. By the year 2030, half a million individuals will turn 18 each year. Those numbers are astounding; our challenge is not only to be able to provide for them but to prepare for them.

What can each of us do to respond to this challenge? I’d be interested in your thoughts!

There’s so much literature out there nowadays that I thought it may be helpful to offer reviews of books that I’ve found worthwhile. I hope you enjoy as well!

~ Maureen

Harmony, by Carolyn Parkhurst

There are a number of books written by moms and dads about parenting a child with autism. Some are good, some are great, and some are just so-so. I had seen Harmony on the summer reading list from the Wall Street Journal and thought, “that sounds like a book I’d enjoy reading by the pool.” One of my favorite authors, Jodi Picoult, recommended the book so I was sure it was going to be a winner.

Harmony, by Carolyn Parkhurst, tells the story of a mom struggling with the challenges facing her family as they navigate life with her 11-year-old daughter, Tilly, who has Asperger’s, and her younger, neurotypical child, Iris. Unable to decrease their daughter’s behavioral outbursts, the family elects to leave their home and relocate to a camp led by a charismatic, cult-like counselor.

As the families cope with their new, strict, living arrangements, required to abandon technology and vehicles to the counselor, questions arise as to the counselor’s motive and emotional stability.

I don’t want to give away the ending, but I can tell you that this was a page-turner all the way through! Certainly an entertaining summer read with a surprising twist!

Just five years ago, the United Nations General Assembly declared July 30^th as International Day of Friendship. Although it isn’t a widely celebrated day at the moment, it certainly has gained traction since its inception. And as we look at our current world, I certainly feel that we are in greater need than ever for a day like this!

So, what does International Day of Friendship represent? This day was instated as a reminder to civilians around the world to promote respect for all human rights, as well as foster a culture of peace and security through tolerance and understanding.

The United Nations places particular emphasis on involving young people, as future leaders, in community activities that include different cultures and promote international understanding and respect for diversity. Lastly, though it might seem obvious, the International Day of Friendship is also based on the recognition of the relevance and importance of friendship as a noble and valuable sentiment in the lives of human beings around the world.

I find UN Secretary-General Ban Ki-moon’s remarks on International Day of Friendship a poignant reminder of why this day is important:

“The International Day of Friendship was initiated by an individual who had a simple but profound vision: that the forces of animosity and hatred in our world are no match for the power of the human spirit.

I had the opportunity, earlier this year in Paraguay, to commend that pioneer, Dr. Ramón Bracho, for his conviction that just as friendship builds bridges between people, it can also inspire peace in our world.

This is of paramount importance as we confront the discrimination, malice and cruelty that drive conflicts and atrocities afflicting millions of people today. We must counter these destructive trends with a renewed commitment to finding our common humanity and fostering shared progress.

On this International Day of Friendship, let us strengthen bonds among individuals and generate greater respect and understanding in our world.”

Ban Ki-moon, UN Secretary-General

This Saturday, take a moment to express your gratitude for the friendships in your life and to spread some peace to the world around you!

Source: http://www.un.org/en/events/friendshipday/

As we celebrate the 26th anniversary of the ADA on July 26th, I find this is a great time to renew our pledge to turn these words into actions! 

~ Maureen

Every July, we celebrate two anniversaries of independence. One is, of course, July 4th. The second is less well known. On July 26th, 1990, President George H.W. Bush signed the historic Americans with Disabilities Act, a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public.

While the ADA has led to changes throughout society, perhaps the greatest area of impact is in the area of employment. With passage of the ADA, employers were required to give all qualified individuals equal opportunity in the workforce, regardless of any disability they may have.

Now, over 25 years later, we have seen so many wonderful achievements for individuals with disabilities. And we have seen incredible growth in the overall community’s attitude and mindset regarding people with disabilities. No longer are persons with intellectual disabilities hidden away in institutions; rather, we hear more and more success stories every day about what people with disabilities are accomplishing. It really is a joyous thing.

Across the Erie community, scores of businesses have opened their doors to hiring people with disabilities. Over the last several years, the Barber National Institute has assisted hundreds of individuals in securing employment. Currently, 25 local businesses employ adults with intellectual disabilities who have been trained through our supported employment program.

Still, we know that there is always more work that can be done. Too often, I hear of people who are considering opening their doors to offer employment opportunities, but have concerns. I want to debunk some of these more common myths about employing individuals with disabilities.

Myth: Hiring workers with disabilities increases workers compensation insurance rates.

Fact: Insurance rates are based solely on the relative hazards of the operation and the organization’s accident experience, not on whether an employer has hired workers with disabilities.

Myth: Providing accommodations for people with disabilities is expensive.

Fact: Did you know that many accommodations or special equipment are available at absolutely no cost? And for the minority of workers with disabilities who do need some sort of special equipment or accommodation, 56% of these cost less than $600. Employers should know that available tax incentives make it even easier for businesses to cover accessibility costs.

Myth: Employees with disabilities have a higher absenteeism rate than employees without disabilities.

Fact: Studies show that employees with disabilities have a lower absenteeism rate and a lower turnover rate when compared to employees without disabilities.

People with disabilities are wonderful assets to a business. They are typically prompt, work until the job is complete, are not searching for alternative employment, and are dedicated to doing a thorough job.

I can’t think about the passage of the ADA without recalling a remarkable woman who was seated in the audience.   Dr. Gertrude A. Barber was a member of President Kennedy’s commission on Mental Retardation, involved in crafting and promoting the ADA, and, of course, known for her life’s work on behalf of creating opportunity for individuals with disabilities. In recognition of her efforts, Dr. Barber was invited to the White House to see this landmark legislation passed into law.

I can recall how happy she was to see this step taken to end discrimination, and how proud she was that the Erie region was on the forefront of this battle.

Each year, approximately 50,000 individuals with disabilities turn 18. Nearly half of these individuals will have average or above average intellectual capabilities. Whether you are a business owner or an employee at a business, consider contacting the Barber National Institute to see what steps you can take to become a place of employment for adults with intellectual disabilities.