WHAT! There's a list?

"So where are you guys on the list?" Jacob's psychiatrist asked my husband and me, as we sat in the cramped little room on the not-so-comfy purple vinyl bench we have come to know well over the last few months.

Before we could answer, Dr. Two turned to her computer I'm assuming to check our list status, while my husband and I both instantly looked at each other. We both knew what the other was thinking without saying a word.

"What list?"
"Did you know there was a list?"
"I didn't know there was a list."
"Are we on the list?"
"How are we NOT on the list?"
"How do you get on the list?"
"Again...what list?"

Dr. Two turned back around in her swivel chair facing us. I'm sure our expressions answered her question, that neither of us knew anything of this so-called list.

"Ohhh....that's right...you are the ones that came in the back door," she said figuring out why our name was no where to be found on the mystery list.

She was right. We hadn't exactly gone about getting into the hospital Developmental and Behavioral Sciences Department the usual way. I had made numerous calls over the years to the hospital inquiring about getting Jacob evaluated. Usually it was after a particularly challenging day with Jacob, but each time I called, I was always put off by the year long wait just to be evaluated. Plus at the time we were still somewhat in a denial stage.

And then I remember the time I called when he was five at the end of Kindergarten. This time I was at my wits end, and ready for a diagnosis even if it was a year wait. I called the hospital again inquiring as to an evaluation. I briefly informed the person on the other end of the phone about our concerns, and before she had even asked my son's name, she asked me, "So do you want an Autism diagnosis?" I was taken aback, and had no idea how to answer that. My reply was, "Well, if that is the correct diagnosis, yes." To which she said, "Well, do you want an Autism diagnosis or not? I can't go further in the system until I answer that question." Again I tried to explain myself. I was confused. I didn't WANT an Autism diagnosis. But if Jacob had Autism, than yes. But on the other hand, I had read that once you had an official Autism diagnosis getting services paid was harder. So would I be setting myself up by answering one simple question. She wouldn't accept my answer, and so again I ended the call frustrated.

We ended up going to a private practice for Jacob's evaluation. I felt very satisfied with the evaluation and diagnosis, but also felt like we were just kind of left out in the cold after the fact.We weren't really given any direction of what to do with this new diagnosis of Aspergers.

And so for months we continued until one night after a book signing by John Elder Robison (who has Aspergers), we talked with the director of the Children's Hospital basically pleading for help for our son. She made promises to get in contact with us and get things rolling for Jacob. Sure enough she kept those promises, and within two months we were being seen by doctors. So much for the year wait, and so much for not being able to proceed until you answer the "Autism Question".

But indeed we had come through the back door, and so therefore, we were never placed on "the list".

The list it turns out is for intensive at home therapy for hours each day where they would work on self help skills, behavior issues, social issues, sensory stuff, whatever your child was struggling with. They would form a rigid schedule and implement it.

Wow! Could that really happen? How awesome would that be to have someone come in and teach Jacob all those things we try to work on everyday, but fail to make any progress. Putting on socks, cleaning up something he spilled, sitting at the table during meals, talking to friends, blowing his nose, keeping hands to self, not interrupting. The possibilities were endless!

"But don't get excited," Dr. Two told us as she added our name to the list. "It won't happen in a year. It won't happen in three years. Maybe by the time Jacob is in high school."

Did she really just say high school? Surely I heard her incorrectly. Right?

But no, I had heard correctly. The reality is, it may never happen for Jacob. Not only does the list go by when you were added, but by how severe the diagnosis. With Jacob being so high functioning, his time will probably never come up.

And of course I can't help but wonder "What if?" What if so many years ago when I first made that call to the Children's Hospital, I had made an appointment. Where would Jacob be on the list now? What if all the times I had mentioned to Jacob's pediatrician our concerns, he had actually suggested we act on them instead of brushing them aside? Where would Jacob be on the list now? Or what if even at age one when I knew something was different, but no one wanted to listen? Would our time be close?

The list makes me sad. Sad for missed opportunities for our family, and sad for all the other families out there waiting for their time to come. There are countless other families desiring help, yet continuing to do their best with little to no support. Why is it like this? Is this the best we can do for our children?

1 in 88. That's the number of children the CDC estimates have been diagnosed with Autism Spectrum Disorders. More common in boys at a rate of 1 in 54. Some would say it is an epidemic. Others don't like that term. And there's always the question of is the number actually going up, or is it just more recognized now. In my mind, it doesn't matter. The numbers are what they are. And something needs to change!

More often than not when you are reading about Autism, you hear "Early Intervention is Essential". I completely agree. But how can we give that to our kids if parents are left out there alone to figure it out on there own. How can we give early intervention if the best we can do is a seven year waiting list? Sure we could get Jacob that intensive therapy right now and forgo the seven year wait, but would we even have a home to live in? Probably not. It is estimated that the cost for proper treatment is around $70,000 a year. Yes, that is out of pocket, because insurance companies aren't willing to pay up.


The demand is high. There are so many families out there affected by Autism and wanting help at an affordable cost. The good news is that there is a growing awareness of developmental disorders in general. I encourage anyone considering going into the medical or teaching field with a love for children, to consider working with those with Autism.

Here's a few facts found on Autism Speaks website. Some food for thought.

• 1,500,000 families in the Western World are raising a child with Autism. 
• Autism is faster growing than childhood cancer, juvenile diabetes, Down Syndrome, Muscular Dystrophy, and pediatric AIDS combined.
• A 1,000% increase in Autism prevalence occurred in the past 20 years.
• Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
• Prevalence vs. Private Funding
  • Leukemia: Affects 1 in 1,200 / Funding: $277 million
  • Muscular Dystrophy: Affects 1 in 100,000 / Funding: $162 million
  • Pediatric AIDS: Affects 1 in 300 / Funding: $394 million
  • Juvenile Diabetes: Affects 1 in 500 / Funding: $156 million
  • Autism: Affects 1 in 88 / Funding: $79 million

For now we will just continue on our journey. We'll continue helping Jacob navigate this confusing world. We'll continue with the constant reminders of not laying on the floor during dinner, or not walking on tip toe. We'll continue patiently showing the correct way to put on socks, holding back while he struggles. We'll teach him the proper way to talk to friends. We'll insist he not play baseball with his pencil at school. We'll deal with the meltdowns as they occur.  We'll continue to push him forward to try new things and not be scared of what the world offers around him.


Seven years. That's the time it will take for Jacob to be in high school. It took us almost that amount of time to get to a diagnosis. Sure he will continue to go to his social skills classes, and meet with Dr. One and Dr. Two. But without an extra $70,000 laying around, we will wait, and wait, and wait until our turn on the list comes up. And as we wait, we will do our best.