All About Autism

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

January – and the new year – brings about such a wonderful feeling of rejuvenation. As the calendar rolls over, so do our goals and ambitions – it truly feels like anything is possible. It’s also a wonderful time to embark on a personal challenge, whether it be for fitness, photography, or random acts of kindness.

At school this year, we are focusing on the importance of Kindness and Wellness in our lives, so I thought it was fitting that I begin a 31 Days of Kindness Challenge! There are several variations out there, any of which would work well. For this challenge, I am using the one below but I have also included links to others that I considered as well. Who knows, I may try another after I’ve completed this one!

(Note: As you can see, this challenge was designed in August, but you can easily adapt it for any month! Source: http://bit.ly/2iEh65z)

Links to additional challenges:

Click to access rak31.pdf

http://brittneyamoses.com/the-21-day-mental-wellness-challenge/

http://www.popsugar.com/smart-living/30-Day-Kindess-Challenge-35664620

As December comes to a close, I always enjoy looking back at the research developments of the year. I thought I would share with you what I found to be some of the significant findings throughout 2016.

~ Maureen

In previous blogs, I’ve discussed the challenges Ryan experiences with anxiety, so I was especially interested in learning that anxiety affects those with autism differently than the general population. It’s excellent to now have a resource for physicians to aid them in diagnosing and treating anxiety in individuals on the spectrum.

https://www.autismspeaks.org/blog/2016/04/26/your-atnwork-recognizing-anxiety-children-and-teens-autism

Many of our students are prescribed Risperdal to reduce severe irritability, agitation, and aggression when behavioral therapy is not successful. Unfortunately, a common side effect is significant weight gain. This year, research revealed that a common diabetes drug can mitigate the weight gain effect of both Risperdal and Abilify.

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

Although I have reviewed the possible link between Vitamin D deficiency and autism spectrum disorder, a newly released article not only solidifies these findings but also suggests that vitamin D3 supplements may significantly improve autism symptoms such as hyperactivity and social withdrawal.

https://www.sciencedaily.com/releases/2016/11/161121110956.htm

When Ryan was first diagnosed with autism, I worked with therapists to develop and implement ABA programs in our home. Ryan worked with staff during the day, and I would implement the same programs in the evenings. I truly believe this structure and continuity 7 days a week is the reason he was able to make such great progress and thrives today. Thus, I was very pleased to see throughout the course of the year increased emphasis on parent preparation and teacher training for those who support individuals with autism.

https://spectrumnews.org/news/parent-training-may-lead-lasting-gains-autism-features/

Very often, the determination of the severity of autism is based upon the child’s verbal skills. Recent research suggests that nearly half of children with autism who speak few or no words have cognitive skills that far exceed their verbal abilities. The findings call into question the widespread assumption that children with autism who have severe difficulty with speech also have low intelligence.

https://spectrumnews.org/news/words-say-little-cognitive-abilities-autism/

Most people are aware that many people with autism report heightened sensory perception. They 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. A new study in mice supports this thinking and suggests that sensory sensitivity directly drives social difficulties. It also hints that treatments aimed at the peripheral nervous system — the set of neurons that connect the brain and spinal cord to limbs and organs — could ease this sensitivity and possibly even social problems and anxiety.

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

Also throughout 2016 were numerous research articles on mutations within genetic makeup that may cause autism as well as various symptoms of autism. As this research continues, I anticipate that 2017 will bring us even more remarkable findings in gene mutations that may cause autism and possible treatments.

https://www.geneticliteracyproject.org/2016/07/21/autism-in-our-dna-slew-of-studies-points-to-genetics-as-main-driver-but-there-is-no-autism-gene/

By keeping a pulse on research trends throughout the course of the year, I find that not only am I able to take what I learn and apply it to our daily practice, both at the BNI and with Ryan, but also I’m constantly made aware of how much effort and commitment our nation gives to the study of autism. When I think about the advances made in the past decade and its resulting impact on the services provided, I only wonder where we will be ten years from now. I have a feeling it’s going to be even more remarkable than the past decade!

This poem is so moving that I wanted to share it with all of you this holiday season. I hope you have a safe and wonderful holiday season!

One of our parents asked me about how to figure out what to give to a three-year-old child who has autism, and know that it will be his favorite? I thought back to my years when Ryan was a preschool child. Right from the beginning, we always said: “Jesus received three gifts from the Magi,” so he would also get three gifts from Santa, as well. I would scour the catalogs, looking for those three great gifts. The first few years, I was excited to watch him open gifts that I was sure were perfect – only to find that he was definitely not as excited as I was!

I finally came to the realization that whether I spent $500 or $5, what was essential was to identify his likes and dislikes to help guide me in picking the “right” gifts, often not the “hot toy” of the season. Twenty years later, this still rings true as I thoughtfully consider what to get Ryan. I’m thinking about a ski pass, water world pass, and …???

My advice to this parent was that the key is to figure out what your child is interested in and use that as your guide to purchasing your gifts. Of course, there are also a few sites out there that provide recommendations for parents of children with autism. I’ve included the links to some below. Any other great ideas? I’d love to hear them! Happy Shopping!

http://naeyc.org/ecp/resources/goodtoys

https://www.nationalautismresources.com/autism-toys-gifts/

http://www.cbsnews.com/media/top-10-toys-and-gifts-for-children-with-autism-picked-by-parents/