The Brain and Autism Research

The brain is arguably the most fascinating organ in the human body, and definitely the most complex.  In recent years there have been significant discoveries made by scientist about the brain, but in reality they have only scratched the surface of all the various nuances it holds.  We know the brain is the mecca of our central nervous system as it sends and receives message to the rest of the body.  But did you know that as small as the brain is in comparison to the universe in which we live it holds more neurons and genes than the amount of stars we can actually see.  There has never been a specific count conducted, but it is estimated that the brain has 100 billion neurons.   

For several years now scientists seeking a cause and potential cure for autism spectrum disorders have turned their attention and focus to the brain as it holds the key to understanding the puzzling mystery behind common autism symptoms and characteristics.  While some scientists might be trying to map the entire brain to better understand its unique circuitry, others are trying to understand the various genes, neurons and chromosomes, and how they are all suppose to interact within normal brain functioning.  The process has already started with comparing normal functioning brains with those of individuals on the autism spectrum, and over the years great strides have been made with mapping and unraveling deficiencies in functioning. In some cases scientist have attempted to replicate autism symptoms and characteristics in mice as a means to study various treatments in an attempt to find a cure. 

A recent study discovered that injections of an agent called “GRN-529” into mice reduced autism like symptoms.  Specifically, agent “GRN-529”  reduced repetitive behaviors and increased social interaction among the mice.  Another study involving mice bred to harbor autism like behaviors found a deletion in a gene called “SHANK3”, which is located in chromosome 22.  What is “SHANK3” you ask?  According to the National Institute on Health (2013), “The SHANK3 gene provides instructions for making a protein that is found in many of the body's tissues but is most abundant in the brain. The SHANK3 protein plays a role in the functioning of synapses, which are the connections between nerve cells (neurons) where cell-to-cell communication occurs. Within synapses, the SHANK3 protein acts as a scaffold that connects neurons, ensuring that the signals sent by one neuron are received by another.”  

There is still a lot of research to be conducted on agent “GRN-529” and “SHANK3” gene, but the preliminary findings are promising and should bring some optimism. For more information regarding the studies mentioned in this blog you can click on the following links:   

http://www.nimh.nih.gov/science-news/2012/agent-reduces-autism-like-behaviors-in-mice.shtml

http://www.nimh.nih.gov/science-news/2011/mice-with-autism-related-mutations-replicate-autism-like-behaviors.shtml

LTO Ventures...Helping Adults with Autism Live on Their Own

As the autism population gets older and migrates into adulthood, parents wonder and are concerned about what will happen to them next.  Where will they live and work?  Will they be capable of living independently and have the capacity to work at all?  Just like any parent, those raising a child with an autism spectrum disorder (ASD) hope that one day their child will obtain employment, and live on their own or maybe in a group home.  According to reports, unemployment among adults with an ASD is a staggering 90 percent, and an estimated 70-85 percent live with a parent or family member. 

Occupational and speech therapy along with educational programs has shown to improve the development of those with an ASD, and increased the potential for job and residential placement.  However, finding employers and residential facilities willing to provide opportunities for those with an ASD is a subsequent challenge.  There are several government agencies and non-profit organizations across the United States that are starting to provide such services to those on the spectrum. 

LTO Ventures based in Henderson, Nevada is a 501(c) (3) non-profit organization providing residential models for adults with an ASD and recently announced an entrepreneurial program.  The organization was started by Mark Olson after being inspired by his teenage daughter, who has autism and is nonverbal, and unlikely she will ever be able to live independently.  LTO Ventures creates “Live/Work/Play communities” to help adults with an ASD to have residential opportunities without having to continue to live with a parent or family member.   The communities house approximately 100 residents and are funded in part by grants, donations, private pay, special needs trust, philanthropic equity funding, and endowments.   

Housing options include individual and shared apartment living, and units are organized in clusters to encourage interaction among residents.  Each unit is adapted and equipped to the specific needs and desires of each person.  The communities are vehicle-free and access managed campuses to ensure the safety and security of the residents.  There are currently 18 such LTO community models in existence or under development in the United States.  Further, each campus also consists of businesses that will create employment opportunities. 

In addition to the residential opportunities that LTO Ventures provides, they recently announced the Autism Entrepreneur Center to help adults with an ASD start-up and run a business.  The center will create partnerships between typical adults and those with an ASD to create and successfully run for-profit or non-profit companies.  The mission of the Center is to give ASD adults the specific guidance, tools and resources they need to create, launch and run their own real business.  The first year goal is to create 12 new businesses and putting an estimated 100 adults with an ASD to work. 

For more information about LTO Ventures you can log on to http://ltoventures.org/

 

Ohio Governor Issues Directive for Insurance Plans to Cover Services for Autism

Recently, Ohio Governor John Kasich announced a directive for insurance plans to include services for autism.  The directive requires insurance plans to include specific treatments, such as, speech and occupational therapy, initial assessments, psychiatric appointments, and other related therapies to treat those diagnosed with an autism spectrum disorder.  More specifically, the insurance plan must cover up to 70 therapy sessions per year and 20 hours of Applied Behavioral Analysis treatment per week.  This directive follows 32 other states that have mandated coverage for autism related services that insurance companies were not previously required to cover. Further, Governor Kasich has advised that State employee health plans will include services for autism by 2014.  This means that 49,000 state employees and approximately 40,000 children covered under state insurance plans will be eligible for benefits. 

The directive comes after the Ohio General Assembly had been debating the issue for several years after a bill was introduced and has yet to take a vote.  Ohio already provides access to autism related services to children through its medicaid program.  Research has shown that early intervention and therapy treatment helps make a significant long-term difference in the lives of children with autism by improving speech, social, occupational, and cognitive skills.

Governor Kasich’s directive was not without criticism from special interest groups.  Some folks are concerned that adding such a benefit will increase the cost of insurance to employees and employers.  Due to the additional cost of coverage and the amount of benefits insurance companies will be paying out will force insurance companies to increase the cost that will be passed down to the consumer. 

“These things aren’t free”, said Roger Geiger, who is the vice president and executive director of the National Federation of Independent Business in Ohio.  “They are all noble and sound good, but at some point it’s the straw that breaks the camel’s back.  Do you want basic coverage for many or Cadillac coverage for a few?”

An estimated 60,000 Ohioans have an autism spectrum disorder and the numbers are rising.  The U.S. Centers for Disease Control and Prevention estimated that 1 in 88 children have an autism spectrum disorder, which is an increase from 1 in 150 just five years ago.  Being a state employee and the father of a child with autism, I applaud Governor Kasich’s bold step to provide insurance coverage.  With that being said I fully anticipate lawsuits being filed to stop the Governor’s directive and an argument for the Ohio General Assembly to make the decision to cover autism services or not.    

 

      

Zach's Christmas List

For a number of years Debby and I have struggled to figure out what to get Zach for his birthday and Christmas.  As a parent you want to get things your child wants, likes and will enjoy, for those special occasions otherwise it is not a very good or memorable moment for them.  Our dilemma was based on two distinct reasons. First, Zach could not verbalize to us what he wanted and so it was a guessing game.  Second, we were unsure if he would actually like or know how to use what we got him. 

Over the years we had some significant hits and some definitive misses.  We tried some toys, but it became frustrating as a parent to see him struggle to understand the concept of what he was suppose to do with it and eventually he would chuck it aside.  For whatever reason we also tried getting him things that would be therapeutic and he would like to play with.  I remember one year we got him a couple of 2 to 3 pound medicine balls, yoga bricks and balancing disk, so he could use it as an obstacle course with the hope that he would stop using our furniture. Needless to say a young child is not very interested in exercise equipment at age 7, 8 and 9.  Now that I look back on it, maybe Debby and I were trying to exercise vicariously through our son or subconsciously we wanted him to be a Pilates instructor in the future. 

In recent years, Zach’s continued improvement of his communication skills, verbal and written, has made buying gifts for him a lot easier.  The last couple of years he hand wrote a list of things he wanted for his birthday and Christmas.  The majority of things on the list were age appropriate and items I would expect someone of his age to ask for. Zach has also been working on his typing skills with his occupational therapists and this year he decided to type out his Christmas list.  Then after he printed out the Christmas list he hand wrote across the top, “Dear Santa please bring my stuff.”  This was the first year in which Debby and I did not have to scratch our heads or bang it against a concrete wall wondering what to get Zach. 

 

Merry Christmas to all and to all a Happy New Year!!!  

Connecticut Tragedy

Unless you live in a remote part of planet earth with no communication with the outside world you have probably heard about the devastating tragedy that occurred in Newtown, Connecticut on December 14^th.  Just prior to 9:30 am, a 20 year-old male stormed into an elementary school and opened fire on students and staff resulting in the death of 20 students and 6 others.  This was the second deadliest school shooting in United States history behind the incident that occurred at Virginia Tech in 2007, but the one in Newtown is arguably the most shocking due to the young age of the majority of the victims.

As a society we always seem to be looking for the answer of why such an incident happens and the answer to that inquiry is not answered until several weeks later once law enforcement completes their investigation, but in the end there is no logical or rational answer that can explain it.  A lot of people have commented that they cannot believe that such an incident happened in a place like Newtown, Connecticut where the population is approximately 27,000. The fact of the matter is regardless of where you live in America and how safe you may feel today does not immune you from a tragedy happening to you or your community tomorrow.  Unfortunately there are all kinds of weapons that are easily accessible in our culture and a minority of people who feel the need to commit such heinous acts that lacks any logical explanation. 

As a society we must be vigilante as we conduct our lives without being completely paranoid and protect our loved ones without feeling the need to barricade ourselves from the potential harm that we could be exposed to on a daily basis.  Not knowing what each day may bring to our lives, tragedy or triumph, always tell your kids, spouse and others close to you how much they mean to you today, because tomorrow it all could be taken from you by some random act of violence or accident. 

Being a native New Englander my heart is full of sorrow and sadness today just like everyone else’s in the world over this senseless tragedy.  Thoughts and prayers to all the victims and their families.       

 

Giving Thanks

There are so many things I am thankful for on this Thanksgiving Day, but my thanks are not just limited to one day of the year.  What I am thankful for I carry with me every day; although, I may not express my thanks openly on a daily basis to those I am thankful for, but today is the one day I will.  Here are my top ten things I am thankful for today and everyday of the year.

10. I am thankful for the place where I grew up, Concord, New Hampshire.  This small town is a great place to raise a family and a place where you appreciate small town living that enriches your life.  It definitely taught me to be humble, grounded, and kept my feet on the ground.  I think about and miss New Hampshire every day. 

9. I am thankful for the humble and simple life my parents provided for me and my siblings.  It has given me a greater appreciation of the things I have been able to accomplish and goals I have reached throughout my life. 

8. I am thankful for the people I have met throughout the 41 years of my life, whether short or long-term, a brief encounter or one that has lasted for years; you have made some kind of impact on my life.

7.  I am thankful for the friends that have come in and out of my life and those that have remained.  We have shared personal struggles, good times, and had a lot of laughs together.

6.  I am thankful to the City of Columbus, Ohio for being progressive in the amount of education and therapeutic programs they offer to families raising a child with autism.

5. I am thankful for all the therapists, teachers and doctors, who worked with my son throughout the years to help him develop and understand the world around him.  Without dedicated professionals like you I am not sure Zach’s future would have as much hope. 

4.  I am thankful for my mother for the 40 years she was with me before she passed.  You taught me how to be child, young man and adult.  You showed me how to be kind, caring, and loving to those around me.

3. I am thankful for my children for keeping me grounded. You make me want to be a better father every day.

2.  I am thankful for my wife and the more than 20 years we have spent together and the incredible friendship we share.  You are definitely the rock of the family.

1. I am thankful for each day I am allowed to continue living on this earth and the time I get to spent with my family.  I could not imagine being without you. 

Ohio Renaissance Festival

A few weekends ago I took my kids, Zach and Riley, to the Ohio Renaissance Festival down in Harveysburg, Ohio.  I had heard a lot of good things about the festival and have wanted to go for a number of years.   The festival consisted of people dressed in the Renaissance era clothing, comedy shows, games and rides, musicians playing music from the historical period, and of course vendors trying to sell merchandise.  I thought the kids might enjoy some of the shows and games, but I was grossly wrong. 

The only thing Zach was interested in was a replica pirate ship that was on display. However, when he found out that he could not board the ship and explore it he was not interested in anything other than knowing what time we were leaving.  We stayed for about 3 ½ hours before departing and I initially thought it was just a waste of time and money.  After thinking about the trip some more I realized that it may have been a waste of money, but not necessarily a waste of time.  You see, a couple of years ago Zach would not have been capable of staying at a place for 3 ½ hours he had no interest in being without making it difficult on his parents.  He would have verbally and physically objected by throwing himself down on the ground in protest.  At the Renaissance Festival where he clearly had no interest as evident by his unmotivated body language, Zach hung in there and tolerated the environment without incident.  

We always want our kids to experience new and different things whether or not it turns out good or bad, and if they liked it or not.  Going into some situations we kind of have a feeling if it will be a positive experience and other times it is unpredictable with what could happen.  From one parent raising a child with autism to all the others doing the same, I encourage you to expose your child to different environments.  This is one of many ways they will learn and adapt to various environments they will be confronted with in the future.