What Scared a Father of a Child with Autism?

I’m scared.

I’ve been scared since our son was diagnosed with autism at age 2 ½. If I’m honest with myself, I was probably scared even before that fateful day when our doctor said the “A-word”. That was over 3 years ago and, while I have learned to move forward and do the best I can for my son, my daughter and my wife, it still doesn’t mean that I’m not scared.

I would imagine that most fathers are scared about various things…even fathers with “typical” children. As men, we’re called to be the leaders of the household, to be strong for everyone, to know what’s best for our children, to lead, protect and provide when times are tough. I would consider those standard fears and challenges of being a father. Those things certainly are floating around in my head, but I’m scared about other things.

“How am I going to pay for this?” That was probably my first thought when the diagnosis of autism was given. Do you know how expensive therapy is? Insurance? Medicine? Treatment? Schooling? Doctor visits? Tests? Let’s just say that it is very overwhelming and can snowball quickly. As a father, you want what’s best for your child—you want to provide for them and give them everything they need to be successful in life. I have heard of situations where families get heavily into debt and even bankruptcy due to the therapies and treatments and procedures they put their child with autism through.

“What is my life going to look like? What is my child’s life going to look like?” That was probably the second thought that popped into my mind. Gone in an instant were the expectations and goals that I had been planning for my child, my first-born son…the “chip off the old block.” Gone. Just like that. He will probably never do certain things, little things that I did with my dad or have dreamed about doing with my son. Gone. “Would he ever talk?” “Would he be able to go to school?” “Would he be a working member of society?” “Will he to live with me forever?”

Can you see why I was scared?

I’ve had all the emotions: anger, sadness, fear, depression, guilt, pity, you name it, and I’ve gone through it already…and my son is only 5-years-old.

It’s not about me. It’s not about my dreams, my hopes, my wants, my bank account. It’s about loving my wife, my daughter and my son and being the best husband, father, provider that I can possibly be. I still can be scared…I still wake up in the middle of the night, or on nights when he won’t sleep very well, and think about the future, finances, living situation, working situation…you name it, I think it.

I’m not weak. I am a strong father. I am a leader in the business community. I have a strong foundation in my faith. I have a strong marriage and relationship with my children. But I can’t do it alone. Our family can’t do it alone. The autism community can’t do it alone.

If statistics are true (or even close to being true) and 1 in 70 boys born today are going to be diagnosed with some for of Pervasive Developmental Disorder…what does the future hold for us? How can we stop or slow this invisible epidemic in our towns, cities, states and country?

In a time when the local, state and Federal governments are slashing budgets for non-profit and government-funded organizations that help children with autism, what is it going to look like in 10, 20, 30 years when there are Millions of adults on the spectrum who didn’t get the services and treatments they need AT AN EARLY AGE in order to be productive members and taxpaying citizens of society?

Can you see why I’m a bit scared now?

Public schools offer the bare minimum required of them to assist children on the spectrum. I’m sure there are some fine teachers and individual schools out there—but from what I’m aware of, it’s not much more than glorified babysitting for children on the spectrum.

Private organizations are few and far between…oh yeah, and very expensive. I would guesstimate that only a small fraction of children on the spectrum get individual or private instruction.

Our political system seems to only want to give lip service to this invisible epidemic and, like so many other programs, pushes it off on other generations to pay for and deal with. THIS CAN’T BE ALLOWED TO HAPPEN!

See…I’m starting to get riled up here aren’t I? This is a very serious issue that is going to continue to define our society and our country and yet there doesn’t seem to be serious and significant attention paid to not only teaching children on the spectrum how to function in society—but teaching society how to function and relate to those on the spectrum.

If our political leaders don’t start paying attention to this serious issue—they need to be voted out of office. If they aren’t concerned about the growing number of children, teens, and adults on the spectrum, then they are not doing their job.

Are you scared now? Good, you should be. You NEED to be scared. Not in a way that will cause you to throw your hands up and just give up—in a way that says, “we need to band together, we need to make a difference in our families, in our communities, in our political system!”

What’s the great line from the classic movie, Network…”I’m as mad as hell and I’m not going to take it anymore.” That’s how I feel…that’s how you should feel.

We must address educating and teaching our children on the spectrum to relate and function in society. We must educate and teach businesses, employer, “typical” people how to function and relate to children on the spectrum.

Being scared is okay. Being scared and doing nothing about it—or expecting our government to solve our problems for us without our input and help—is NOT okay.

Fathers…mothers…family members…friends…people…join be in my fear but don’t be paralyzed by fear. We can grieve, mourn, be mad, scared…but we still must move forward and do whatever is best for your family, your marriage, your community and especially your child with autism.

That’s just a bit of what keeps me up at night.

Seth/Melanie Fowler

Authored, Look at my Eyes, a parent's perspective re: navigating autism-early intervention, insurance, treatments, a paradigm of a family & child with autism