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.

Last Wednesday, April 2, 2008 marked the first annual “World Autism Awareness Day.” The day was created by the General Assembly of the United Nations which voted in November 2007 to establish the annual event date as an opportunity for Member States to raise awareness about children with autism.  Various events and lectures were planned around the globe and CNN scheduled all-day coverage about autism. April is also National Autism Awareness Month.

Autism Awareness RibbonWhat is autism? According to the Autism Society of America, “Autism is a brain development disorder that impairs social interaction and communication, and causes restricted and repetitive behavior, all starting before a child is three years old. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.”

Autism is one of five disorders considered a Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development.”

These disorders include: Autistic Disorder, Asperger’s Disorder, Childhood Disintegrative Disorder (CDD), Rett’s Disorder, PDD-Not Otherwise Specified (PDD-NOS). Each disorder has specific diagnostic criteria which been outlined in the American Psychiatric Association’s Diagnostic & Statistical Manual of Mental Disorders (DSM-IV-TR).

Diagnosed in an estimated 1 in 150 children, autism is the most common Pervasive Developmental Disorder, and the numbers are on the rise. It is estimated that as many as 1.5 million Americans have some form of autism.

Data from the U.S. Department of Education and other governmental agencies indicates that autism is growing at an alarming rate of 10-17 percent per year — and the Autism Society of America estimates that 4 million Americans could be diagnosed in the next decade.

Below are some additional facts about autism, courtesy of Autism Speaks, an advocacy group:

Basic Facts

  • 1 in 150 children is diagnosed with autism
  • 1 in 94 boys is on the autism spectrum
  • 67 children are diagnosed per day
  • A new case is diagnosed almost every 20 minutes
  • More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
  • Autism is the fastest-growing serious developmental disability in the U.S.
  • Autism costs the nation over $90 billion per year, a figure expected to double in the next decade
  • Autism receives less than 5% of the research funding of many less prevalent childhood diseases
  • Boys are four times more likely than girls to have autism
  • There is no medical detection or cure for autism

Incidence vs. Private Funding

  • Leukemia: Affects 1 in 25,000 / Funding: $310 million
  • Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 million
  • Pediatric AIDS: Affects 1 in 8,000 / Funding: $394 million
  • Juvenile Diabetes: Affects 1 in 500 / Funding: $130 million
  • Autism: Affects 1 in 150 / Funding: $15 million

National Institutes of Health Funds Allocation

  • Total 2005 NIH budget: $29 billion
  • $100 million goes towards autism research
  • This represents 0.3% of total NIH funding

Autism has clearly become the polio of our time and something must be done to reverse its progress. If we don’t act now and dedicate more research dollars to finding a cure and treatment, while also finding a way to convince the health insurance industry to cover the costs associated with treatment we run the risk of losing an expontentially increasing percentage of this generation’s children to autism.

The impact of autism on families is extensive. Emotionally, it can be draining. Mentally it can be consuming. Physically it can be exhausting. Financially, it can be devastating. In addition to the divorce rates of parents with autistic children being higher than the average, many families of children with autism struggle to avert bankruptcy.

It’s no wonder, the costs involved are daunting: from the early intervention and treatment services (which only a handful of states cover) to the lost income from one parent in a two-parent household who must stay home with the affected child while services are provided, autism affects an entire family, not just the individual overcoming it.

Raising a child is stressful enough — raising a child with autism is beyond compare. That is not to say that raising a child with autism is totally unlike raising a “neurotypical” child, it just puts things within a different framework.

I speak from personal experience: my older son, Jacob, who will turn five this September, was diagnosed with autism just before his third birthday.  We have come a long way since then, but still have far to go. He is now speaking contextually, exhibiting emotion and is full of boundless energy. Some days are full of joy while others are full of challenges parents of children without autism truly cannot comprehend.

Fortunately Jacob is on the higher functioning end of the spectrum and has many skills that a typical child near his age has (though developmentally he is not functioning at a level consistent with his chronological age). He is a sweet and smart little boy with a curiosity about the world and great potential to do wonderful things with his life.

We are grateful for the services he has received and credit them with a great deal of his progress so far. However, we have also had to aggressively advocate on his behalf to ensure he continues to receive the services to which he is entitled.

Jacob currently receives his applied behavior analysis (ABA) services through the Center for Autism and Related Disorders (CARD) — a worldwide leader in the field founded by Dr. Doreen Granpeesheh. His Individualized Education Program (IEP) is coming up in a month and my wife and I are beginning to prepare for battle with the Saugus Union School District to ensure that he receives the most appropriate and beneficial services.

As a father, Jacob has taught me many lessons about life. but I know I have much more to learn. I now appreciate the small steps in life and applaud incremental improvement, however small, because it represents movement in the right direction. I admire his sweet and loving disposition and marvel at his unbridled joy and creativity. He is a wonderful little boy who has inspired me to become a better father and, frankly, a better person.

For additional information about autism, I encourage you to visit the following: