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!”

Two years ago, on August 2, 2006, my world was forever changed.

Autism AwarenessIt was on that day when my older son, Jacob, was officially diagnosed with autism. By the time we received the official diagnosis it was clear that he was on the spectrum, but the official diagnosis really made everything “real.”

Prior to that point we had enrolled Jacob in occupational and speech therapy classes (at our own expense) to help him learn to more effectively communicate.

He had minimal language, but was more prone to pointing to things he wanted. More commonly, he would take our hands and guide us to what he wanted.

Jacob’s diagnosis allowed us to receive a vast array of services — free of charge — through our Regional Center, a quasi-governmental agency that connects children with special needs with qualified providers. The main service we receive for Jacob is a one-on-one therapy called Applied Behavior Analysis (ABA). Jacob qualifies for 40 hours a week of services — which now are divided between his time in school and the ABA he receives at home.

After approximately a year with one vendor who we found to be highly disorganized and unprofessional, we were fortunate to change agencies. Jacob now receives his ABA therapy from the Center for Autism and Related Disorders (CARD) — a worldwide leader in the field founded by Dr. Doreen Granpeesheh. We have also explored alternative biomedical treatments and experimented with a gluten and casein-free diet.

Without question the past two years have been beyond hard — I could have never imagined our family would have been confronted with so many life changing and life threatening situations. In early 2006, as it was becoming increasingly clear that Jacob was dealing with something more significant than speech delay, his younger brother, Max, was born six weeks premature with a host of life-threatening challenges of his own.

For Max, basic survival was the main issue — he nearly died three times in as many months and I even gave him CPR — on my birthday of all days — after he stopped breathing, turned grey and went limp. We spent weeks in hospitals with him, NICUs, PICUs, Children’s Hospital, you name it. All the while we knew that Jacob needed more help than we were able to give him.

The experience drained us emotionally, financially and physically. Having one special needs child is one thing, having two really tests you. We sometimes refer to Jacob and Max as our “million dollar babies,” because the direct and indirect medical care they have both received in the past two years has easily totaled $1 million or more. Fortunately we had insurance, but unfortunately, our insurer was adept at finding all sorts of clever reasons why they were not liable for paying for various treatments.

However, despite the multitude of challenges we have faced in the past two years both Max and Jacob have made tremendous improvements. By most accounts they have both beaten the odds and continue to surpass expectations.

Although he still has a ways to go, Jacob is now very talkative and interactive. He is full of joy and has an impressive ability to play with words and exhibit creative thinking. Max is a gregarious fireball who has a lust for life that is inspirational — he is the kind of person who other people want to be near. I admire them both tremendously and know that they are my strength.

I now feel that I have my sons back and am finally able to experience something close to “normal,” whatever that really is! I can now imagine what it will be like in another two years and am excited and hopeful about the potential both boys have.