All About Autism

Dr. Joseph Barber, MD., recently wrote a letter to the editor in the Erie Times News about the unfortunate fact that being overweight is a stigma in an increasing number of children. Obesity rates for children with disabilities are nearly 40% higher than for children without disabilities. The rates for adults are frightening: approximately 60% higher than for adults without disabilities. Reasons for this can vary; they include:

• A lack of healthy food choices and/or dietary restrictions
• Medications that can contribute to weight gain
• Physical limitations that reduce a person’s ability to exercise
• Lack of accessible environments that enable exercise

With obesity comes other health problems, including asthma and migraine headaches. In children with ASD who were obese, other health issues that were associated include anxiety, depression, and sleep problems. As Dr. Barber points out, obese children often miss more school and underachieve academically compared to average weight peers.

Peers, parents, and family members can contribute to stigmatization; for example, teachers may establish lower expectations for obese children. Of course, in today’s social media-saturated world, many negative associations can further increase feelings of depression, negative self-esteem, binge eating and social isolation.

What can we do? We must be positive supports in the lives of anyone, with or without disabilities, who struggles with obesity and encourage others to do so as well.

Did you know that today is World Read Aloud day? It is a day that is dedicated to celebrating literacy as a fundamental human right. On this day, people around the globe celebrate by coming together to read aloud and share stories, whether that is in the home, the classroom, or out in the community.

I started reading aloud to Ryan when he was a newborn. Goodnight, Moon, How Much Do I Love You?, and Is Your Mama A Llama? were just some of our favorites. This practice continued through his preschool years… until he began reading aloud to me!

Here are some reasons why reading aloud is so beneficial and important:

• Reading aloud to children every day puts them almost a year ahead of children who are not read to
• 750 million adults around the world lack basic reading and writing skills
• Nearly 85% of the juveniles who face trial in the juvenile court system are functionally illiterate, illustrating the close relationship between illiteracy and crime. More than 60% of all inmates are functionally illiterate.
• Low literacy rates cost $74 million annually in direct health care costs
• 1 in 4 children in America grow up without learning how to read

Literacy is a skill that you can acquire at any age. One of our students in our Adult Basic Education program is 75 years old  – and he just learned to read!

At the Elizabeth Lee Black School, we are celebrating World Read Aloud day in a number of ways, including having parents join their Early Education students to collectively read a story in the gym; having our adult students read to some of our middle schoolers; and our high school aged students reading to individuals at our Senior Center.

How will you “Read Aloud” today?

2017 was a significant year for special education law. The two most important legal developments were rulings on the meaning of Free Appropriate Education (FAPE) and the scope of the IDEA exhaustion requirement (the first two listed below, respectively).

I anticipate that we may see more challenges to school districts based upon the Endrew decision, in particular. I very briefly summarized ten of the most significant legal findings of the year below.

• Progress, IEP must be “appropriate” in light of child’s circumstances

Rather than adapting a rule for determining the substantive adequacy of any given IEP, the Supreme Court ruled that the program must be “appropriately ambitious,” meaning that programs must sufficiently challenge a student regardless of disability.

ENDREW  V. DOUGLAS

• Exhaustion not necessary for claims unrelated to provision of FAPE

The Supreme Court unanimously held that IDEA’s exhaustion of administrative remedies requirement only applies when the substance of a parent complaint is a denial of FAPE. Parents cannot bypass the IDEA’s administrative procedures by simply omitting certain terminology from their complaints.

FRY V. NAPOLEON

• District has no obligation to address child’s religious or cultural needs

IDEA

does not require an IEP to address the religious and cultural needs of a child with a disability, even when those needs go to the core of his identity. A district fulfills its duty to provide FAPE if it develops an IEP that meets the child’s secular educational needs.

M.L. V. SMITH

• Reference to methodology in PWN doesn’t modify terms of student’s IEP

PWN (Prior Written Notice) is a proposal for program implementation that is not binding on the school district, meaning districts can make recommendations without the court interpreting them as being part of the IEP.

M V. FALMOUTH

• IDEA’s statute of limitations only applies to the filing of a complaint

Parents can seek relief for IDEA violations that occurred more than two years before the filing date, provided they file a complaint within two years of discovering the district’s alleged wrongdoing.

AVILA V. SPOKANE

• “Clear consensus” of evaluative data undercuts offer of 6:1 placement

This ruling does not require IEP teams to adopt all recommendations by outside evaluators; rather, it shows that an IEP team cannot disregard a “clear consensus” of evaluative materials showing that a child needs a particular service, methodology, or placement to receive FAPE.

A.M. V. NYC DEPT OF EDU

• Unilateral IEP amendment impedes CA mom’ ability to monitor services

A parent’s right to meaningful participation does not end when the IEP document is signed; she/he also has a right to monitor and enforce the provision of special education services.

M.C. V. ANTELOPE VALLEY

• Reimbursement award can’t predate district’s obligation to provide FAPE

A court may not award reimbursement for private services a student with a disability received before the district had a duty to provide the student FAPE. Once the district violates that duty, though, it may have to pay for any private services for the student afterward.

DALLAS INDEP V. WOODY

• Stay-put reimbursement order turns parents into prevailing parties

If parents have to sue a district to compel the provision of stay-put services, the district will likely have to pay any legal expenses related to that enforcement action.

M.R. & J.R. V. RIDLEY

• Child’s IEP must address transition between private, public school settings

Nothing in the IDEA expressly requires an IEP to include a plan for transitioning a child with a disability from one type of environment to another; however, an IEP team would be well-advised to consider whether a child requires such services to make progress towards his/her annual goals.

R.E.B. V. HI DEPT OF EDU

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 2017… What a year it’s been!

~ Maureen

Link between parental age and autism, explained

• Study of 5,000 people suggests that parents in their mid-40s are 5-10% more likely to have a child with autism than are 20-year-old parents
• Why? Older men and women pass along a greater number of spontaneous DNA mutations

CDC says developmental disabilities are on the rise

• Least common among Hispanic as compared to other ethnic groups
• Lower than some earlier funding as LD, ADHD not included
• More restrictive definition of developmental disabilities
• Between 2014 and 2016, the prevalence of developmental disabilities among kids ages 3 to 17 increased from 5.76% to 6.99%
• Prevalence was “significantly higher” among boys than girls
• Rise stems from an uptick in children diagnosed w/DD and not autism or ID

Rapid brain growth in infancy may signal autism

• Surface area measurements (blue) of 6-month-old babies can distinguish children with autism from those without the condition
• Increase in brain surface volume before 12 months
• Largest brain growth = most severe symptoms

Depression, not treatment, is to blame for increased risk in autism

• Children exposed to antidepressants were twice as likely as the other children to be diagnosed with autism
• Association disappeared when the researchers controlled for other characteristics, including mother’s education level, mental health diagnosis, and age at delivery
• During a child’s second year of life, overall brain size increased at the same time as their behavioral symptoms, which lead researchers to correlate the largest brain growth with the most severe symptoms of autism
• Autism occurs at a higher rate in families that are affected by depression, anxiety, or OCD

Heightened stress reaction linked to autism-related GI problems

• Cortisol is released by the adrenal glands during physical or emotional stress
• Relationship between increased cortisol response to stress and GI issues
• Children with autism and chronic GI symptoms had significantly greater spikes of cortisol

Benefits of parent participation in early intervention

• Randomized longitudinal follow up from 2-18 years
• Teaching parents how to interact and respond to cues from babies at high risk of autism can decrease the severity of autism features at age 3
• The new study suggests these gains persist for months to years

Cerebellum’s role in autism homes in on social region

• Researchers stimulated brain activity in the RCrus1 (transcranial direct current stimulation)
• Cerebellum has to do with motor planning, social skills, and language
• Findings indicate that a region of the cerebellum called right crus 1(red/orange) is disrupted in children with autism
• Area plays role in processing social information; can cause social problems and repetitive behaviors
• Artificial stimulation of the region in adults reverses social problems

Autism rate appears to have stabilized

• National Health Interview surveys polls American households about a variety of conditions
• Prevalence of autism in US has reached a plateau
• 41% of US kids/teens are on the spectrum
• 34% of these are boys; 1.22% girls

I recently read an interesting article that made the case for treating autism research like a venture capitalist endeavor. Although I’m familiar with the concept of venture capitalism, I went in search of its definition. Venture capital is a form of financing that is provided by larger firms to small, emerging firms that are deemed to have high growth potential.

This article argues that because autism research is funded by only three organizations, research is currently focused primarily on autism as a genetic disorder of brain wiring. While this is certainly a worth endeavor, more investors with varying interests could lead to more diversified research topics. I certainly believe a case could be made, since we have seen the rate of autism rise exponentially from 1 in 150 to 1 in 42 children in less than two decades.

This makes a lot of sense to me… I wonder why we aren’t doing this. Would we see a breakthrough in autism research if the opportunity to conduct research was made available to more scientists? Imagine the impact if a new treatment were discovered that would enable the individual to require less support and gain more independence. This would have a trickle-down effect on the families from an emotional and financial standpoint, as well as the nation, which currently spends between 300-500 million dollars annually for autism services.

I am all too familiar with the challenges of applying for a research grant and the many, many steps of review that are required before a grant is approved. We applied for an NIH grant to provide a training program for educators and paraprofessionals on best practices in teaching children with autism in the early 2000s, and months went by before we heard that we were approved – for the first stage. There was still an additional supplementary application required. I can only imagine the process to begin a scientific research study!

Certainly, the rigid procedure is well-intentioned but perhaps if we considered streamlining this process we would see a surge in new interest and activity… and who knows where that may take us?

Danke, grazie, merci, gracias, spasibo, 谢谢, cảm ơn bạn, thank you!

January is National “Thank You” Month.

Growing up, my siblings and I quickly learned that thank you was an essential word in our vocabularies.   Of course, mothers are always right.  Studies have shown that being thankful improves sleep patterns, mental and physical well-being, relationships and anxiety — not just for the giver, but the recipient, too.  Research found that by saying thank you, people felt valued, appreciated and were more likely to provide additional assistance.

From the age of 2, I always encouraged Ryan to say thank you.  Today, he may be the most polite person ever, and I think his thankfulness to others has had a positive impact not only on him, but on those who provide him with support.

There are many ways to celebrate National Thank You month.  This article suggests many that I myself practice.

• Keep a gratitude journal
• Random acts of kindness
• Write a note of gratitude (teacher, child, parent, spouse, friend)
• Take the time to visit a friend or relative who is confined to their home

As I walked down the hall today, one of our high school students was talking with faculty member Maria Hopkins.  I overheard the student say “You’re a gift from God, Maria Hopkins. Thank you Jesus Christ.”

I often ask myself as I drive myself to work what am I thankful for?  It’s a great way to start the day off with a positive attitude.

I’d encourage you to post on the blog what makes you thankful this January.

“When you arise in the morning, give thanks for the morning light, for our life and strength.  Give thanks for your food, and the joy of living.  If you see no reason for giving thanks, the fault lies with yourself.” ~ Tecumseh, Shawnee Chief

As January 1 approaches, many of us find ourselves determining to stick to a resolution, be it losing weight, better budgeting, or even being kinder. However, despite our best intentions, estimates show that more than half of those who set a resolution are not able to keep it. As it turns out, there are some strategies behind keeping those promises.

1. Pick a realistic goal, and break down the larger goal into smaller achievements. Many individuals will decide on a rather grandiose resolution, such as losing 50 pounds. While you may eventually reach this number, consider setting a goal such as losing 5 pounds per month.
2. Keep track of your progress. There are literally dozens of apps out there designed to help with money, weight loss, meditation, time management… the list is endless! For those of you who may be less technologically-inclined, consider starting a Resolution Journal. It can be any small notebook or pad, but find time to jot down the successes – and bumps along the road – to your resolution. Which leads to the third tip…
3. Don’t quit just because you might slip. To err is human; at some point, each of us will lapse on our goal. However, it’s not the mistake but how you respond to it that indicates whether you will reach your goal. Accepting the mistake and deciding to recommit can actually re-motivate you, as opposed to deciding that all efforts so far have been a waste.
4. Use the buddy system. Nothing helps motivate you like having a friend alongside to pull you out of the days when you really don’t feel like going to the gym, etc. Likewise, being a source of motivation for your friend on his or her low days can also be a reinforce to yourself, as well.
5. And finally… Celebrate your progress periodically! As you reach smaller goals or even just make it through the first four weeks, allow yourself to pause and reflect in your hard work or commitment. On a day like this, you may choose to treat yourself to a cupcake or glass of wine, take a day off from the gym, or buy yourself that book you’ve been eyeing… treating yourself is a great way to positively reinforce the work you’re doing. Just be sure to get back on the wagon the next day!

This year, Ryan and I are recommitting to eating nutritiously. We have created a chart of foods that we can eat regularly, foods we should try to never have, and how often we are allowed to treat ourselves! What are your goals for 2018? Any great tips? I would love to hear from you!

Wishing you and yours a warm and joyous holiday season! ~ Maureen

As we approach Christmas, I began thinking about Christmases past. Ryan’s first Christmas was quite eventful. Erie was in the midst of the Blizzard of ‘93, and we were picking up my mother and driving to Uncle Joe’s house for Christmas dinner. Typically, it takes 45 minutes to get to his home – on this evening, it took one hour just to get to my mother’s home! There was no visibility, but we forged ahead in hopes that the weather would get better. By the time arrived, there were “No Travel” advisories on every TV station. Rather than risk driving off the road with a newborn baby, we turned around and drove home.

Since that first year, Ryan has experienced every kind of Christmas imaginable. Regardless of the weather, we have been fortunate to spend this special day surrounded by family and good friends.

From the start I encouraged Ryan to think about baby Jesus and the story of the first Christmas.  As the wise men brought Jesus three gifts, Ryan would receive three gifts on Christmas.  We’ve continued this through the years.  !  I have encouraged many to use the story of the three gifts of the magi for their children.

This year his gifts will be a Holiday Valley ski pass, Waldameer/Waterworld pass and golf lessons… but it’s a surprise, so don’t tell him! Just yesterday, Ryan wondered out loud what his three gifts would be.

This year, while it may not be a white Christmas, Ryan is hosting a Jingle & Mingle party for many of his cousins, aunts, and uncles. Ryan is turning out to be quite a party planner! He loves the idea of people coming to his house, choosing the goodies to eat and drink, and being in charge.

It will be a very Merry Christmas – I hope yours is as well!!

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

Large study shines spotlight on ‘mosaic’ mutations in autism

About 8 percent of de novo, or non-inherited, mutations in people with autism appear in only some of the body’s cells, according to an analysis of sequences from nearly 20,000 people. Previous studies missed the vast majority of these so-called ‘mosaic mutations.’ The findings add to mounting evidence that mosaic mutations contribute to autism risk. These mutations arise after conception; the later they occur, the fewer cells they affect.

Read the full article here.

https://spectrumnews.org/news/large-study-shines-spotlight-mosaic-mutations-autism/

Rethinking regression in autism

Epidemiological studies have found that anywhere from 15 to 40 percent of autism diagnoses fit the regressive type, with estimates varying wildly depending on how regression is defined. And regardless of the definition, estimates of regression’s prevalence (mainly as measured in the United States) have tended to rise as studies have become larger and more rigorous. This variability and expansion have both challenged the prevailing view of regression as an exception.

Read the full article here.

https://spectrumnews.org/features/deep-dive/rethinking-regression-autism/

Mice made with CRISPR usher in new era of autism research

Researchers have debuted two mouse models of autism made using the gene-editing tool CRISPR. Both strains lack one functional copy of CHD8, a gene with strong ties to autism. CRISPR allows researchers to quickly and efficiently insert specific mutations into single-cell mouse embryos. Several teams have used the method to make mouse models for other conditions, including Rett syndrome, an autism-related condition. The new mice represent the first use of the method to make models expressly for autism.

Read the full article here.

https://spectrumnews.org/news/mice-made-crispr-usher-new-era-autism-research/

MRI reveals striking brain differences in people with genetic autism

In the first major study of its kind, researchers using MRI have identified structural abnormalities in the brains of people with one of the most common genetic causes of autism, according to a new study published online in the journal Radiology. The abnormalities visible on brain images corresponded to cognitive and behavioral impairments in the study group, suggesting a future role for imaging in identifying people with autism who are in most urgent need of intervention.

Read the full article here.

https://medicalxpress.com/news/2017-08-mri-reveals-brain-differences-people.html?ref=yfp

Tune in next month for an update on autism research! Merry Christmas!