All About Autism

March is Women’s History Month. There are certainly numerous women throughout history that are worthy of a moment’s recognition. In the world of children and adults with special needs, I’m grateful for the contributions of these four women below, who truly have made history.

Dr. Gertrude A. Barber

Gertrude began her career as an educator and administrator in the Erie City School District. Frustrated by a lack of options for children with intellectual disabilities, Dr. Barber, along with a small group of local teachers and parents, opened a one-classroom school in the local YMCA. Today, the Barber National Institute serves over 4,000 children and adults with disabilities throughout Pennsylvania.

Helen Keller

Although an illness left 19-month-old Helen deaf and blind, she overcame these enormous challenges and went on to become a world-famous speaker and author. She is remembered as an advocate for people with disabilities, amid numerous other causes. She was a suffragist, a pacifist, and a radical socialist. In 1915, she and George Kessler founded the Helen Keller International (HKI) organization. This organization is devoted to research in vision, health and nutrition, with a mission to save the sight and lives of the most vulnerable and disadvantaged.

Eunice Kennedy Shriver

A longtime advocate for children’s health and disability issues, Shriver was a key founder in 1962 of the National Institute of Child Health and Human Development (NICHD), a component of the National Institutes of Health. In 1968, Shriver founded the Special Olympics, for which she is perhaps best known. She has also assisted in establishing numerous other health-care facilities and support networks throughout the country, including the Eunice Kennedy Shriver National Center for Community of Caring at University of Utah, Salt Lake City.

Temple Grandin

Diagnosed with autism at age 2, Grandin is a prominent and widely cited proponent of the rights of persons with autism and of animal welfare. Based on personal experience, Grandin advocates for early intervention to address autism and supportive teachers, who can direct fixations of the child with autism in fruitful directions. She is the best-selling author of many books and was the subject of HBO’s 2010 documentary, “Temple Grandin.” Most recently, Grandin was named to the Women’s Hall of Fame.

Are there any special women in history that you would add to the list?

Did you know that yesterday was “Spread the Word to End the Word” day? Begun as a website by the Special Olympics in 2008, this grew to a nationwide campaign involving schools and universities across our county, all with the goal of ending the use of the R-word in everyday language.

Many people may not consider the R-word to be a slur, but to millions of individuals with intellectual and developmental disabilities, that is what it can feel like. Language can have a huge impact on attitudes and actions.  By eliminating the R-word from regular speech, we can work on creating more accepting attitudes and communities for all people.

In 2010, President Obama signed “Rosa’s Law,” which was inspired by a Maryland woman with an intellectual disability. The bill garnered unanimous support in passing both the House of Representatives and the Senate. Rosa’s Law was commemorated in a White House ceremony with an 11-member delegation of Special Olympics athletes, leaders and self-advocates present to celebrate the milestone. Starting that year, federal agencies dropped the terms “mental retardation” and “mentally retarded” in federal health, education and labor laws and replaced them with “intellectual disability” and since then, almost every state has passed similar legislation.

By challenging others to talk, think and write with respect, we are making a noticeable and sustainable impact in ending the use of the R-word. TV networks have now banned the use of the word, and public figures are speaking out against those who might use the word.

Read some of the inspiring testimonials that were shared, or share your own, here: http://www.r-word.org/.

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

Brain scans may forecast effectiveness of autism treatment

Patterns of activity in the social brain predict how much a child’s autism features will improve after a behavioral therapy called pivotal response treatment, according to a new study. The study is small, but the findings hint that brain scans, or an equivalent technology, could help clinicians select the most promising treatment for a child with autism.

Read the full article here.

https://spectrumnews.org/news/brain-scans-may-forecast-effectiveness-autism-treatment/

Robots spark social play in children with autism

In the past couple of years, dozens of children visiting the Yale Child Study Center have played with a green and wide-eyed robotic miniature brontosaurus called Pleo. These are children with autism, who normally have tremendous difficulty communicating with other people — but they eagerly interact with the robot.

Read the full article here.

https://spectrumnews.org/news/robots-spark-social-play-in-children-with-autism/

Study links heightened stress reaction to autism-related GI problems

Chronic gastrointestinal problems are unusually common among people who have autism. Now, researchers in the Autism Speaks Autism Treatment Network report evidence that these painful issues correspond with a heightened hormonal reaction to stress. While more study is needed, the finding raises hope for more effective treatment options.

Read the full article here.

https://www.autismspeaks.org/blog/2017/01/10/study-links-heightened-stress-reaction-autism-related-gi-problems?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+AutismSpeaksBlog+%28Autism+Speaks+%7C+Official+Blog%29

Rapid brain growth in infancy may signal autism

The faster the brains of children with autism grow in their first year of life, the more severe their autism features are likely to be at age 2, according to a study published today in Nature. This rapid growth can in fact predict whether a child will later be diagnosed with autism. The findings point to a possible biomarker that could help doctors identify autism in infants —two to three years before the typical age of diagnosis.

https://spectrumnews.org/news/rapid-brain-growth-in-infancy-may-signal-autism/

Tune in next month for an update on autism research!

Today is the 6^th annual Digital Learning Day! This day is a nationwide celebration that encourages the use of technological devices to improve children’s learning experience in schools. The goal is that all students will have access to high-quality digital learning opportunities, regardless of where they reside.

Started in 2012, Digital Learning Day has provided a great opportunity for schools to showcase their innovative technology programs and share all of the creative ways they use technology in the classroom. More than just a chance to celebrate technology, it’s a chance to celebrate learning.

At ELBS, we celebrating with a technology showcase. Last year, we hosted our first “technology showcase” for digital learning day, inviting all classrooms, all BNI staff, and the public to visit the school and explore the ways our school utilizes technology in our various departments. It was such a success that we decided to host a technology showcase once again!

This year we expanded our number of stations to seven, to include an Aurasma app demonstration, a yoga class, our many assistive tech devices in the speech department, camera club, the TapIt Interactive Computer and more! In addition, students from Penn State Behrend will be demonstrating a new ebook project.

To take a look at the Digital Learning Day’s interactive map of activities, including our very own, visit: http://www.digitallearningday.org/Page/423

Ryan and I have been talking about how we are going to participate in the #RAK17. We decided that every day, each of us will do a special act of kindness and at the end of the day share with each other what we did. In fact, this morning I witnessed a random act of kindness… for Ryan. He was running on the track at the gym, and his shoelaces had come loose. He asked a woman jogging by him if she would tie his shoes very tight for him. She stopped in the middle of her workout to do so. Moments like that are so touching!

As I thought about the topic of kindness, I began to consider how kindness is taught. The rampant problem of bullying in our schools underlies a deeper issue – are we teaching our children to be kind? 

According to a recent study (link to study), about 80% of interviewed youth said their parents were more concerned with their achievement or happiness than whether they cared for others. The interviewees were also three times more likely to agree that “My parents are prouder if I get good grades in my classes than if I’m a caring community member in class and school.”

I think we can all agree that’s somewhat upsetting. So the question becomes, “What do we need to do differently?”

It’s never too early for children to hear from parents that caring for others is a top priority. A big part of that is holding children to high moral standards, such as honoring their commitments. I recall how as a youngster I signed up to play tennis, only to find that it wasn’t the right sport for me. However, my parents insisted that I continue for the season, as I had made a commitment to the team to play.

Learning to be caring is like learning anything else: it takes practice. Lots of it. This begins with the parents. Children need to hear their parents address each other as well as others in a respectful manner. This can be as simple as being polite to the waiter taking your order. Make sure your child understands that there is never an acceptable time to be rude to another person. Ryan and I have talked about the importance of being polite so often that he often goes “overboard” and says thank you repeatedly – to which I respond, once is enough!

It’s easy to foster a caring attitude toward family and friends, but it can be more challenging to teach a child how to extend that to an unfamiliar person. Even though technology makes it appear that we are more connected than ever, the reality can be that there is a disconnect behind the computer screen. While the internet is a great platform to learn more about our globe and its challenges, it’s important to take this to the next level. I have always encouraged Ryan to learn more about and be open to different cultures and communities other than his own, but also to ask, “What can I do to help these people in need?” In light of our current political climate, this is more important than ever!

Parents are a child’s first teacher. We are mentors and role models. Even when you’re not aware, your child is observing you and seeing how you manage problematic or stressful situations. The way you respond is the way they will respond.  Ask yourself: “Is this how I want my child to behave?” When I’m in a stressful situation, I find it helpful to take deep breaths. I have been teaching Ryan the same technique whenever he becomes anxious and overwhelmed.

This week is a wonderful reminder to all of us to be kinder to people and the world around us. Our world can always use some extra kindness!

I recently read an article that discussed the benefits of optimism and the possible correlations between an optimistic outlook and physical health. Researchers measured physical health outcomes in a variety of different compromising health issues, including cancer, heart disease, infections, diabetes, kidney failure, and more. They found that better health was in fact tied to optimism – some studies even point to a longer life span in people who are generally optimistic!

Of course, I began considering what “optimism” really means to me, particularly during a rather tumultuous time in our country’s history. American psychologist Martin Seligman defines optimism as reacting to problems with a sense of confidence and high personal ability. Most people associate the word with reflecting a belief that the future will turn out for the best. Personally, I believe that optimism is less about being overtly happy in the face of adversity but rather remaining hopeful and determined that the adversity will pass to make way for better times.

So how can we stay optimistic when situations might tempt us to think negatively?

• Look for examples

All around us are stories of people who have managed to overcome tough times through an optimistic mindset – in books and movies, in your community, in your family and even in your workplace. Our world is full of people who have found optimism and hope in the face of hardship. Reading or learning about their perseverance is not just inspiring, it also opens the door to empathy and greater understanding of the scale of difficulties people may face.

• Change what your inner voice is telling you

When difficulties arise, it’s easy to fall into a negative cycle of thoughts, including despondency, blame, and feeling that you may always be prone to “bad things.” Instead of these thoughts, remind yourself of three important things: It’s not permanent, it’s not pervasive, and it’s not necessarily personal (taking all of the blame). As Seligman says: “Optimism matters because it produces persistence. Permanent explanations for bad events produce long lasting helplessness and temporary explanations produce resilience.”

• Socialize

Whether it is a happy hour with friends, a seminar or conference in your field of interest, or a support group, find others who can help you to feel less alone, allow you to voice your challenges, and offer an optimistic reply. The power of others who provide support can help to reinforce your own optimistic inner dialogue to weather the tough times.

• Move

I know I mention exercise often as a remedy for many situations, but the positive effects of exercise are virtually endless. Blood flow to the brain, decreased stress, and boosted endorphins are all great gains from exercising and wonderful ways to combat pessimism and negativity.

Ryan and I practice all of them, why don’t you consider as well? What are some of your tips to stay optimistic? I would love to hear from you!

I often write posts that are focused on the best ways to provide care for children and adults with disabilities. But what about the caregivers themselves? There are many of us out there, whether we are a parent, a family member, a teacher, a direct service professional, or a medical professional. Of course, although we bring an abundance of love and care with us to this “job,” I think few would disagree that being a caregiver is also a challenging job. Each of us has experienced “burnout,” a time when the emotions associated with caregiving surface and cause a person to become overwhelmed, or worse.

I believe it’s important to remember that, good or bad, these feelings are not only allowed but valid and important. We all experience them at some time. I recently learned that moms of children with autism had significantly lower levels of the stress hormone cortisol, compared to mothers of children without disabilities. Why? Repeated exposure to stress, over time, is known to cause diminished stress hormones. In other words, the high stress levels become typical, causing desensitization.

Of course, each of want to be the best caregiver we can be. So, what can we do to help us cope? Some mechanisms I have found helpful include:

• Healthy Lifestyle – Make exercise a priority in your routine, develop a regular sleep routine, and eat a nutrient-dense meal; these small tips will help you cope with many emotional side effects such as anxiety, mental fogginess, and exhaustion. For Ryan and me, we wake up very early and workout so that we leave for work relaxed and refreshed. For others, the end of the day may be a great time to relieve the stress that has built up throughout the day.
• Plan and Prepare – Rituals and routines are known to have a calming effect, and can help prevent problems before they develop. This works not only for you, but for your child. Put a plan in place for the “just in case,” so that you know how to respond in an unpredictable situation. You may also want a crisis plan to help you deal with a severe behavioral event.
• Forgive Yourself – Sometimes, things do not go as planned, even with the best of intentions. We all make mistakes and spend a lot of time thinking about the “If only I had.” Certainly, it’s perfectly normal to think this, but what is more important is to forgive yourself for being human.
• Find a Cheerleader – caregivers need care, too, from family, friends, support groups, coworkers, teachers, doctors… the list goes on! Surround yourself with positive, supportive people whom you can confide in and express yourself to.
• Treat Yourself – Consider what small things bring you self-gratification: is it painting? A manicure? A glass of wine at the end of the day? Treating yourself once in a while is not only acceptable, but will help your remind yourself that you are worthy of praise, too.

Of course, this list is only a small handful of tips that have been beneficial to me through the years – above all, you should find what works for you as a caregiver! Please feel free to share any special tips below!

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

Technology can curb social exclusion of children with autism   

A new study involving interactive robots helps teach children with autism how to navigate social situations. Researchers at George Washington University are encouraging about two dozen children with autism to communicate with humanoid robots that detect and analyze the children’s actions and respond in ways that reinforce social learning. The robots use personalized gestures and vocal cues to provide interactions that are rewarding to the children.

I am particularly interested in this because of our involvement with Notre Dame and Robots (link). Read the full article here.

Folinic acid improves communication, eases autism symptoms in small study

In a small pilot study funded by Autism Speaks, treatment with folinic acid – a naturally occurring form of folate – improved communication and eased autism symptoms in language-impaired children who have autism. The gains were greatest in a subgroup of children who tested positive for an autoantibody that may partially block this vitamin from entering brain cells.

I’ve written about the deficiencies in folic acid during pregnancy and the possible connection to autism (link), but this looks at improving communication. Read the full article here.

Diverse causes of autism converge on common gene signature

The brains of people with autism show a distinct molecular signature, according to the largest-yet postmortem study of people with the condition. The signature reflects alterations in how genes are pieced together and expressed. The findings confirm and extend those from two smaller studies of autism brains “This pattern isn’t necessarily there in everybody at birth — there’s a window of time over which these patterns appear,” a researcher says. “Maybe there’s a treatment window there, where you could prevent that from occurring.” Preliminary data suggest that part of the gene expression signature the researchers found is specific to autism, but the team has not yet fully explored possible overlap with related conditions. The next step is to figure out how mutations linked to autism alter gene expression.

Read the full article here.

Changes in blood-brain barrier, intestinal permeability found in individuals with autism

In collaboration with researchers from the University of Maryland School of Medicine and others, Fiorentino’s group found an altered blood-brain barrier in tissue samples from people with ASD when compared with healthy controls. The group analyzed postmortem cerebral cortex and cerebellum tissues from 33 individuals – 8 with ASD, 10 with schizophrenia and 15 healthy controls. Altered expression of genes associated with blood-brain-barrier integrity and function and with inflammation was detected in ASD tissue samples, supporting the hypothesis that an impaired blood-brain barrier associated with neuroinflammation contributes to ASD.

Read the full article here.

We’ve learned so much in the past 5 years, what will the future bring us? Tune in next month for an update on autism research!

Are you a mentor? What does it mean to be a mentor? I would suggest that mentors come in all shapes and sizes; they can be a parent, a teacher, a coach or a volunteer who pours his/her time and expertise into helping young men and women develop to their fullest potential. Nobody succeeds on their own; every young person’s strength and resilience is fostered by those who have taught them they can do anything they put their mind to.

I am who I am because of some of my mentors. My earliest mentors were my mother and father. I can recall my dad had a passion for writing and a love of the English language. From early on, he instilled in me the belief in the power of words and provided me with guidance on developing this skill.

Of course, Dr. Gertrude Barber (my Aunt Tootie) had a profound influence on my career. From my earliest days volunteering at the Barber Center as a teenager, I observed her skills in working with parents, staff, and the community at large. Most importantly, I observed her compassion with the children and adults at the Center.

As I grew older and began working at the Institute, there were many professionals and para professionals who graciously offered me guidance and helped me to grow. Now, many years later, I consider it a privilege to be able to mentor the many young students and professionals who come to our school ready to begin a career in special education. In this way, I’m continuing to carry on Dr. Barber’s vision for the Barber National Institute by echoing her beliefs today.

January, National Mentoring Month, celebrates mentoring and the positive effect it can have on young lives. It’s also an opportunity to draw attention to the need for more mentors, to help young people achieve their full potential. The need for mentoring is all around us. Look around your community to explore where your mentoring might be most beneficial, both to you and to the young person. I guarantee you it will be a win-win situation!

President Obama has issued a very compelling proclamation for National Mentoring Month, which you can read here: https://www.whitehouse.gov/the-press-office/2016/12/28/presidential-proclamation-national-mentoring-month-2017

The events in Chicago last week were certainly horrific. Although safety is an important lesson for all parents, persons with disabilities have added challenges – such as situational awareness and recognizing social cues and/or danger; sensory issues; and communication – that can make them more vulnerable if they are not prepared. I’m only hoping that what happened in Chicago can serve as a wake-up call that to all that we must respect and be sensitive to children and adults with disabilities.

As a parent, you are the best person to teach your child about safety. Safety skills must be taught, practiced, and reinforced frequently. Ryan was not yet three when I realized the potential impact of his impulsivity. Thus began my emphasis with him on safety skills; in his case, “Stick like glue with Mom” (a phrase I still use!) and “Don’t go up to strangers.” These lessons will change with the age/maturity level of your child. As Ryan became older and could independently go to a vending machine or restroom, this phrase changed to “Come right back and be sure not to talk to strangers!”

Ryan and I frequently role-play in a variety of situations, both at ho
me and while we are out in the community. By changing where and when we discuss this, my hope is that Ryan thoroughly understands the importance of safety at all times and in all places. .” Other safety concepts I stress to him are to always stick with a buddy when he is out and to always remember that it is OK to say “No!”

Regardless of the specific lesson, the key is to “think safety” at all times, not only for you as the parent, but also to help your child to start thinking this way as well.

As your child approaches adolescence, the increased importance of social life, interpersonal relationships and the desire for independence presents a unique set of challenges and concerns. It’s important your child be prepared for situations where a parent may not always be present.

For children who are able to be independent, teaching them about proper use of money, cell phones, and public transportation can help them to navigate their world. Setting boundaries for where your child is allowed to go, establishing curfews, and making sure your child is not alone are also helpful guidelines. 

Although we would hope that it will never be used, both you and your child should have a plan for an emergency. This can be as simple as calling 911 and giving the critical information.

There are a number of resources available – I’ve shared a few that I found most helpful below. The safety of all of our children is a conversation we need to have on an on-going basis. I welcome any tips and resources you may have to share!

Resources:

http://researchautism.org/resources/a-guide-to-safety/

https://www.kidpower.org/who-we-serve/special-needs/

Click to access angie-blumel-advocate-guide-safety-planning-final-printer.pdf