Yesterday was April Fool’s Day, but Autism is no laughing matter.

What is Autism? According to the National Institutes of Health, “Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.”

Autism often locks individuals in a world of their own, but on Monday, April 2, 2012, the planet will join together to “light it up blue” today for the fifth World Autism Awareness Day (WAAD). The inaugural WAAD was observed on Wednesday, April 2, 2008.

One of only three official health related United Nations Days, WAAD  “activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.”

The incidence of autism diagnosis has exploded in recent years: in 2000 1 in 150 children were diagnosed, whereas the most recent figures indicate that 1 in 88 children have received a diagnosis.

This is a 20% increase from the previously reported 1 in 110 children who received a diagnosis! More troublesome, according to noteworthy additional facts, Autism affects boys more commonly than girls — the incidence of diagnosis is now 1 in 54 boys! Previously, that number was 1 in 70.

As I have previously noted, I am personally touched by this increase in autism diagnosis:  my eight year son, Jacob, received his autism diagnosis just before his third birthday.

Since then he has made remarkable progress, most notably due to early intervention services such as Applied Behavior Analysis services provided by the Center for Autism and Related Disorders (CARD). Due in large part to CARD, Jacob’s inner light now shines brightly.

He has emerged into the thoughtful and intelligent little boy he always was.

He loves to tell bad jokes, do math, learn about the life, and he even recently tried out a batting cage!

He can now overcome his obstacles with eagerness and enthusiasm.

All this — and much more — from a sweet little boy who initially only spoke in 3 to 6 word sentences, lined up items, heavily stimmed and exhibited many obsessive compulsive behaviors.

Grateful is a word that barely communicates how I feel.

Despite the many challenges he has faced, Jacob continues to inspire and impress me. I am so proud of the progress he has made, and will continue to make. It is my hope that Jacob can always exist in his ebullient essence. By all accounts, Jacob is blooming!

I remain committed to Jacob’s enduring progress and will forever be his most ardent ally. I continue to make the most of my moments with him and my younger son, Max, and celebrate his achievements every day.

And so, even if you aren’t personally affected by Autism — although the chances of that are continue to decrease while the number of diagnoses increase — I encourage you to make an effort today to learn more about autism and understand the unique individuals who share that diagnosis.

Sometimes dates make a difference.

August 2, 2006 is one of them: it was on this date that my older son, Jacob, received his official Autism diagnosis from Robert J. Rome, PhD of the North Los Angeles County Regional Center. At the time, Jacob was slightly more than a month away from his third birthday.

Receiving the diagnosis was an emotional experience, though it was not entirely a surprise. Actually, in many respects it was a relief because having the diagnosis allowed Jacob to receive an array of helpful services for which he did not previously qualify.

Jacob and MeAt the time of his diagnosis Jacob had very limited speech (3 to 6 word sentences were the extent of his verbal communication). He also lined up items, heavily stimmed and exhibited many obsessive compulsive behaviors. In addition he had many fears and also lacked basic social skills. Despite these challenges, he emanated a beautiful and loving spark that just needed some help to shine more brightly.

Since then Jacob has made remarkable progress, most notably due to early intervention services such as Applied Behavior Analysis services provided by the Center for Autism and Related Disorders (CARD).  Founded in 1990 by Dr. Doreen Granpeesheh CARD is a leading provider of autism services.

Due in large part to CARD, Jacob’s inner light now shines brightly. He has truly emerged into the wonderful, thoughtful and intelligent little boy he always was. Grateful is a word that barely communicates how I feel.

He is fascinated with numbers and can calculate large sums. His favorite number is “infinity!” Not surprisingly he also loves Buzz Lightyear (“to infinity and beyond!”). For a while he could even tell you the day of the week on which your next birthday would fall! Actually, I suspect he still can, but his therapists have discouraged the behavior.

Jacob and MeHe also loves to tell bad jokes — specifically those in the classic “knock, knock” variety. He is also a wonderful artist who loves to draw and paint. Although I am his Dad, I can honestly say he has an impressive talent.

It makes me smile that he can now not only communicate verbally but artistically as well. Occasionally he enjoys playing music with his brother, Max.

He is also an “old soul” and has engaged me several times about topics seven-year old boys don’t often ponder.  Once he asked me “Dad, do you have to be dead to be in heaven?” I replied, “I suppose you do.” His response: “But God is in heaven and he isn’t dead!” Nietzsche retorts about God possibly being dead aside, I was stunned that this little boy was thinking about such big concepts. More recently he asked me what is on top of heaven!

Impressively, Jacob’s success story is more common than it is rare, as evidenced by the inspiring 20th anniversary video from CARD, below:

Looking to the future,  one of my goals is to eventually create an organization called the “Ourtism Association.” The mission of the organization — named to recognize how autism affects everyone in a family and that it is “our” responsibility as a society to help — is to provide supplemental income to families and adult individuals with a diagnosis.

Right now it is only a dream, but I am working to make it a reality someday. My “big harry audacious goal” (nod to Jim Collins) is to raise enough money to provide $50,000 to 50 families each year.

I suppose that isn’t outrageously audacious (it is “only” $2.5 million!), and 50 families is the tip of the iceberg, but my own experiences have inspired me to make a difference. This would be my contribution to that noble mission.

Jacob and MeOn a personal level, I will continue to encourage Jacob as the unique individual he is.

I enjoy experiencing educational activities with Jacob, but also recognize his need to be silly. Despite his uncommon maturity, the last thing I want to do is rush him into adulthood.

It is my hope that Jacob can always exist in his ebullient essence.

I remain committed to Jacob’s enduring progress and will forever be his most ardent ally. I continue to make the most of my moments with him and my younger son, Max, and celebrate his achievements every day.

Speaking of Max, the other night when I called to say goodnight to him, Jacob told me a “knock, knock” joke:

“Knock, knock!”

“Whose there?”

“Max.”

“Max who?”

“Max no difference!”

My oldest son, Jacob, turns five years old today, September 10.  I remember looking at him while he warmed up in the incubator just minutes after he was born and, while holding his tightly curled fingers, said to him “Happy birthday, Jacob!”

4-color-puzzle-piece-special-needsI knew things would never be quite the same — now I was responsible for some else’s life and welfare, not just my own.  I was excited, scared and emotionally overwhelmed at the presence of this little spirit in my midst.

Little did we know then what we would be dealing with now. That being said, he is as much a joy now as he was then, despite the unexpected challenges we will overcome — they key word being “will.” To paraphrase a famous saying, “failure is not an option.”

In addition to the medical and developmental challenges, another challenge we will overcome is the inability, or at least the reluctance, of our school district (Saugus Union) to provide the most beneficial “free and appropriate” special education services to which he is entitled a person protected by the Individuals with Disabilities Education Act (IDEA).

Initially we had to fight with the district because they wanted to place him in a special day program kindergarten program with the vague promise of “mainstreaming” him for short periods in the day. “Unacceptable,” we said, “Jacob needs to be in a typical setting with the help of an aide and he definitely is not ready for kindergarten.”

Eventually, after significant wrangling, the district agreed to place Jacob in the quasi-independent “Fun for Fours” pre-school program with the intent of focusing on his social development.  However, we had to compromise on the aid, and instead of him receiving direct assistance from a dedicated aide, he will split one aide with three other students.

Although the environment is a positive one, we are very concerned that he is not getting the personal guidance and attention that he needs to develop. Over the summer he benefited immensely from a one-on-one aide, one of his ABA therapists from CARD (Center for Autism and Related Disorders), who joined him for six weeks of a summer school program. Near the end of the six weeks Jacob was starting to initiate interaction with his peers — something he has never done before.

We now find ourselves at an important crossroads. We feel this is a “make or break” year for Jacob’s social development and are committed to getting him the resources he needs and the opportunities to which he is entitled. After numerous attempts on our own behalf to get the district to give Jacob a one-on-one aide we have realized, regardless of whether they are sincere or not, it won’t happen without a fight.

After initially considering a special education lawyer who, though vastly successful, bills in $5,000 retainer installments, we were referred to an absolutely impressive special education advocate, Melonie T. Matjeka of a group called “Empowered Parents.” Fortunately for us, she is significantly more affordable, but no less effective — we almost literally signed over our entire economic stimulus check to her.

Thanks for helping us help our son, Internal Revenue Service!