All About Autism

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

Febrile Seizures & Epilepsy – An Expert Discusses

Febrile – or fever-induced – seizures are common in babies, and pediatricians rush to assure us that they don’t cause harm. In this article, a professional expert reviews commonly asked questions and addresses fears associated with these seizures.

Read the full article here.

https://www.autismspeaks.org/blog/2016/07/01/febrile-seizures-epilepsy-and-autism-your-questions-answered

Toxicologists Study How Pharmaceuticals Affect Genes

                For decades, researchers have studied how certain chemicals cause genetic mutations that can lead to diseases like cancer. Epigenetics involves more subtle interactions between environmental exposures and our genes. Certain chemicals appear to “dial up” or “dial down” gene activity without actually changing, or mutating, the gene itself.

Read the full article here.

https://www.autismspeaks.org/blog/2012/03/20/toxicologists-study-how-pharmaceuticals-affect-genes?utm_source=/blog/2012/03/20/toxicologists-study-how-pharmaceuticals-affect-genes&utm_medium=text-link&utm_content=Toxicologists%20Study%20How%20Pharmaceuticals%20Affect%20Genes%20&utm_campaign=relateditems2

‘Science junkie’ bets big on autism’s environmental origins

A self-described “autism science junkie,” Escher taught herself the intricacies of research as she struggled to understand how her two children came to have autism. Along the way, she came up with a provocative idea to explain how chemical exposures might have led to their autism diagnoses:  hormones Escher’s mother took during pregnancy damaged the DNA in Escher’s eggs.

Read the full article here.

https://spectrumnews.org/news/science-junkie-bets-big-on-autisms-environmental-origins/

Tune in next month for an update on autism research!

Whether or not your child has special needs, being a parent isn’t for the faint of heart. Of course, the rewards vastly outnumber the challenges. But that doesn’t mean that we haven’t each had “one of those days:” a meltdown, a bad day at school or work, a frustrated conversation. In those moments, it can be easy to feel discouraged. In fact, I would venture that it’s even a natural, first reaction. However, if you’re having “one of those days,” I believe it is SO important not to stop there. Take a deep breath. Remember that each day you are giving all that you have, and striving to be the very best you can be. And that you are helping to do the same for your child.

There are ups and downs to each journey. Try to accept these days as “part of the ride,” and never get too hung up on a low point. In fact, I personally try to not focus too much on the high points, either. I find that I most cherish the average days in between.

Also know that whether it be a family member, friend, colleague, or even internet connection – you are never truly alone. Don’t be afraid to reach out to someone to get that pick-me-up in your time of need.

Any other great tips for getting through “those days?” I’d love to hear!

As you may or may not know, in late June the 2016 KIDS COUNT data book was published by the Annie E. Casey foundation. This is a state-by-state annual report on children’s overall well-being in the categories of: economic, education, health, and family & community. There was some good news – Pennsylvania has decreased the number of 4^th graders who are not proficient in reading and math. Fewer children go without health insurance. There has been a decrease in teens who abuse alcohol and/or drugs, as well as the teen birth rate.

But unfortunately, it wasn’t all good news. Pennsylvania’s ranking in economic well-being, which looks at data related to child poverty, family employment, and housing costs, decreased from 19^th in the country (2015) to the 22^nd for this year. Similarly, last year we were ranked 7^th overall in education; this year, we are 10^th. As if this wasn’t enough bad news, the nation, too, has fallen in these same categories.

In Pennsylvania, we are experiencing a sluggish economic recovery. As a result, many families are still facing tough economic times and poverty continues to remain a challenge. Too many households are headed by a parent(s) who lack a high school diploma.

So what can we do? As I’ve mentioned in previously blogs(link), we know that with high quality early childhood education, children get the “right start” to succeed throughout their school career and by extension their lives. We need to increase access to high quality Pre-K, and better fund all of our schools so that a child’s zip code doesn’t determine the quality of his or her education.

Read PA’s report here: http://www.papartnerships.org/news/pennsylvania-falls-again-in-latest-national-rankings-for-child-well-being/

Read the full results here: http://datacenter.kidscount.org/

I recently read that July is “Purposeful Parenting Month.” Hmm… Is this positive parenting? Something different? It certainly was a new term that I had not read about. I did some research and learned several interesting and helpful ideas, including:

• “Purposeful parenting” clarifies for the child what is expected of him/her
• It maintains that the parent establish rules or boundaries and reinforces these rules at all times
• It considers what you value and believe as well as what your child values and believes to create an environment of respect
• Compassion, understanding, attention, and even fun are components of this style
• “Purposeful parenting” looks for ways to keep the child positively engaged while simultaneously building and strengthening the parent-child relationship

If this sounds like something you might be interested in, consider:

• Try to spend alone time, one on one, with each of your children every day. This doesn’t need to be hours, but certainly finding 15 minutes of uninterrupted attention for one another in a day
• Exercise as a family. Not only do you spend time together, but you also reinforce the importance of physical activity for healthy living
• Eat dinner together. Research shows that this is one of the keystones to any strong family. Engaging in discussion without smart phone or TV as distractions builds communication and trust.
• Give your child household chores. Having chores helps to teach your child about responsibility, as well as giving him or her a sense of importance in keeping the household functional.

I was pleased to read that there are several things Ryan and I already do together, but as I read: “parenting is an ongoing path of learning” – and I certainly learned a few ideas to consider!

In honor of National Parks and Recreation month, I wanted to highlight the benefits of one of the most popular “park activities:” Hiking. Of course, we all would acknowledge that hiking promotes a healthy body. But did you realize that it also affects the physiological and mental aspects of our brains?

When I was young, being outside – particularly during summer break – was a given. You’d go outside at 9:00, come in at lunch, and be back for dinner! I was startled to read that today only 6% of children play outside in a typical week. Instead, they are spending nearly 8 hours a day watching TV, playing video games, using a computer, tablet, or a phone for recreational purposes. Don’t get me wrong: I have touted the benefits of virtual reality and digital devices many times before (LINK), however I certainly think there should be a healthy balance between indoor and outdoor activities.

I recently read that “nature really does clear your head.” Scientists have compared mental states of those walking through a park versus walking through the city. Persons reported lower levels of anxiety and stress after walking through a park. They even measured blood flow to the prefrontal cortex. High blood flow, which is associated with moodiness, was significantly lower after strolling through the park.

As we enjoy these warm summer days that are all too fleeting in our community, take a moment to get outside and enjoy the parks in your local community. For myself, I think I’ll take a walk through Presque Isle!

Presque Isle, Erie, PA

As a parent and an educator, I am always disappointed when I hear some of the myths about intellectual disabilities and Autism that still surface. In this age of the internet and Google, I would expect that people would seek out the facts when this information is literally at their fingertips.

Still, judgements are made based upon information that is presented to them, often without vetting the idea before supporting it. Some of the largest myths that I’ve encountered:

MYTH: Children with Autism do not like physical contact of any kind.

FACT: As they say, “if you’ve met one child with Autism, you’ve met one child with Autism.” Each child with autism is unique, with their own strengths and challenges. It is certainly not a universal rule that they do not like physical contact. Some children love to be held and hugged!

MYTH: Autism is the same as an Intellectual Disability.

FACT: Many children with Autism do not have intellectual disabilities and vice versa. They are two separate disorders. While they can present concurrently, this is not always the case.

MYTH: Children with intellectual disabilities do not graduate from high school.

FACT: They certainly do! Although their curriculum may look different than the traditional, it will follow the same core regulations and requirements set forth by the Department of Education.

MYTH: No individuals with intellectual disabilities live on their own.

FACT: Many individuals live independently or semi-independently, with room-mates and additional support staff.

MYTH: Individuals with autism or intellectual disabilities are not able to get a paying job upon graduation.

FACT: Just in this calendar year, BNI has helped over 40 individuals with intellectual disabilities secure competitive jobs in the community. As I’ve shared with you all in the past (LINK), we have high hopes that these numbers can and will grow!

Are there some myths you hope to dispel here as well? I encourage you to share them below!

Hard to believe it’s July 4^th and summer feels like it’s halfway over! Growing up, I loved seeing the fireworks! Our family would take blankets and refreshments to sit on the golf course, OOHing and AAHing as they went off. Ryan was three when I took him to the fireworks for the first time. I thought for sure he would enjoy the variety of colors and lights high in the sky. However, he immediately started screaming and asking to leave. Of course, we did, and that was the one and only time that we watched the fireworks from outside.

Every child reacts to fireworks differently, but here are a few tips I’ve learned over the years that may help you:

• Prior to the fireworks, watch some videos from YouTube on the computer so that he/she knows what to expect.
• Consider watching the fireworks from indoors. You can still enjoy the lights in the sky without the booming noises.
• Have headphone available, in case the sound – even inside – is too much for your child.
• Celebrate the 4^th by making your own fireworks with these fun craft ideas:
  • Painting Fireworks: http://www.learning4kids.net/2015/12/27/painting-fireworks/
  • Fireworks Salt Painting: http://busymommymedia.com/firework-salt-painting/
  • Popsicle USA Flag: http://www.makeandtakes.com/popsicle-stick-button-flag-kid-craft
• Teach your child the true meaning of the 4^th of July with these great illustrated books on America’s birthday: http://kidsactivitiesblog.com/30010/best-books

Be safe and have a fabulous holiday weekend!

Research Updates

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

New Findings on Probiotics & Autism

In a new study, researchers found that administering a common probiotic eased autism-like behaviors in mice that had low levels of this naturally occurring bacterium in their intestinal tract.

Read the full article here.

https://www.autismspeaks.org/blog/2016/06/24/new-findings-probiotics-and-autism-what-you-need-know

How Extreme Prematurity Ups Autism Risk

                In an extension of an initial study conducted in 2009 at Boston University, nearly 25%  of children born before 28 weeks of gestation showed signs of autism at age 2, and about 15% of those born between 23-24 weeks of pregnancy have autism, compared with 3.4% of children who are born at 27 weeks. Researchers have determined that infants born prematurely have a higher risk of autism and that this risk climbs the earlier a baby is born.

Read the full article here.

https://spectrumnews.org/opinion/q-and-a/questions-for-robert-joseph-how-extreme-prematurity-ups-autism-risk/

Mom’s Immune Markers Flag Autism with Intellectual Disability

Pregnant women with elevated levels of certain immune molecules (interleukin-6) in their blood are at increased risk of having a child with both autism and intellectual disability, according to a new study. The findings suggest that autism in addition to an intellectual disability is a unique condition and that these mothers have a distinct immune profile.

Read the full article here.

https://spectrumnews.org/news/moms-immune-markers-flag-autism-with-intellectual-disability/

Social Problems May Stem from Sense of Touch

Many people with autism report heightened sensory perception and may be acutely aware of sounds or of people or objects touching their skin. Researchers have theorized that this feeling of sensory overload might make social situations overwhelming and challenging to navigate based on a new study with mice. The mice lacking the autism-linked gene MeCP2 in only these touch neurons develop anxiety and social deficits later in life, the researchers found. Conversely, mice that lack MeCP2 in all of their cells except for these neurons show mostly normal social behavior and no signs of anxiety.

Read the full article here.

https://spectrumnews.org/news/autisms-social-problems-may-stem-from-sense-of-touch/

Tune in next month for an update on autism research!

There’s a buzz of excitement among our adults in the Transitional Work Service program. Friday night is ESO Prom! To give you a little back story, several months ago we were approached by “Project Prom,” whose mission is to provide gowns and tuxes to students in the area who otherwise might not be able to afford prom attire. She wondered if some of our students might be interested in participating. I immediately thought about our adults and our monthly ESO dances… although we have never had a prom, we could certainly explore the option!

Expanding Social Opportunities (ESO) is a BNI group that holds monthly dances for adults with disabilities, ages 18 and over, at local colleges. In addition to these adults, college students from each campus attend the dance and assist with planning the event. The dances are a wonderful opportunity for social inclusion and are always greatly anticipated by our adults, including Ryan!

In this age of being all-inclusive, some might say that a dance only for young adults with disabilities works against this philosophy. But I think back to Ryan’s high school Prom experiences. Yes, it was an “inclusive dance,” but little interaction actually occurred between Ryan and his typical classmates. Perhaps Ryan even knew this would be the case – he did not want to go to his high school prom, but I insisted he should. Conversely, he can’t wait for this Friday’s dance!

Even though I am 300% in support of inclusion, seeing the genuine excitement and joy among these adults makes me realize that there is still a place in our society for events like this, events where each attendee feels welcomed and free to be himself or herself. I asked some of our TWS adults why they were looking forward to going, and here is what they shared with me:

“I was born to be a dancer.”

“Because I am taking my girlfriend and get to be with my friends.”

“I get to go to a hotel for dinner!”

Unfortunately, I won’t be able to attend the Prom, as Ryan has told me it’s “off limits!” But I know it will be a great night for all!

PS: A huge THANK YOU to donors – Project Prom, Potratz Floral Shop, DJ Pat Martin, PHB Photography, and Ambassador Banquet and Conference Center!

As I listened to CNBC this morning and learned that today, June 20th, is World Refugee Day, I thought about the number of children we have in our school who are former refugees. One little girl in particular, Angela, is a remarkable story of courage and resilience. Her mother fled her native country because her daughter was unable to get the care and the education and support that she needed. She spent two years in a refugee camp prior to being relocated to Erie. Within two weeks, she was enrolled in our school, began receiving therapies, and soon had a wheelchair. Almost a full school year later, she uses a walker throughout our halls, speaks fluent English, and is preparing to move on to public school. As I look at Angela, I only wish that all refugee children with disabilities could have as a bright a future as she!

Sadly, over 60 million people around the world are now displaced from their homes, having been forced to flee from war, persecution and disaster. While exact statistics on how many of these individuals have disabilities are hard to find, we know that 1 in 66 children have autism so we can estimate the prevalence of children with autism in these refugee populations.

As the UN High Commissioner for Refugees described in stark terms in 2009, the reality for most displaced persons with disabilities is dire: “Too often invisible, too often overlooked, refugees with disabilities are among the most isolated, socially excluded and marginalized of all displaced populations.”

Fortunately, over the last several years the United Nations refugee agency (UNHCR), working with the Women’s Refugee Commission and other partners, has developed new policies and tools designed to improve protection and services for displaced persons with disabilities. These promising first steps give me hope that one day all children with disabilities may be given the opportunity to develop to their fullest potential!