My son is autistic.
And I love him more than I ever thought it was possible to love another human being.
When Nikalys was born, three years ago next month, I imagined what it would be like raising a little boy. Playing baseball, sporting events, halloween costumes, vacations, telling him that the building with the smoke coming out of stacks was a cloud factory, etc. You know; typical father-son stuff. Nik's brain had other plans.
My wife and I noticed he wasn't developing at the pace he should. He missed milestone after milestone. He didn't roll over when he was supposed to, crawl or walk when he was supposed to, or begin talking when he was supposed to. We got him involved in the Help Me Grow program and began taking him to a neurologist. Initially, not much was done, which isn't surprising. Not much is known about autism, and many physicians dismiss early warning signs as nothing to worry about.
But worry we did.
We tried to give him extra stimulation and expose him to as much as we can. He loves going to Gymboree classes, but rarely would he interact with the other children there and was content to play on his own. Other two year olds try to interact with him, but since Nik's communication skills are lagging, he doesn't say much back. Through no fault of their own, the other kids lose interest, walk away, and Nik is left standing by himself and I can see my wife's heart break a little. We have been trying him in a pre-school with 'normal' kids and it's helped him a lot in many areas. But the times I've picked him up from school, I watch him and see him ostracized from the group. It's very hard to watch. But at least his social skills are progressing.
He's going through speech therapy, which of course isn't covered by insurance. The therapy helps, I suppose. Not really sure if it's what's helping him, or if it's the work that we at home are doing with him. Nik's speaking in two and three word phrases at this point, even though my wife and I are the only one that understand most of what he says. His diction is getting better, but there are times we still look at each other and shrug when Nik is saying something. But at least his verbal skills are progressing.
My wife and I are lucky with Nik with regards to his behavior. He is extremely well behaved... or so it seems. Sure, he doesn't get into things, doesn't throw temper tantrums, and doesn't act out like most every two and three year old. But he should be doing some of those things - heck, it's 'normal.' He is becoming increasingly independent and has recently noting that certains things are "mine," which is a great step. Some of his unique behavior, such as imitating a fan and spinning around, can be considered cute, but too much of it is disconcerting. But at least his behavior is progressing.
And that's the thing I hold on to. He is progressing. I hope with everything I can that he continues to progress. With enough intervention, therapy, and love my wife and I hope to 'mainstream' him some point in elementary school. Many autistic children hit a point where they plateau and even regress. I hope this doesn't happen with Nik.
The reason for this entry is not to have people sympathize with me and my family. Life is what it is. We will deal the best we can with it and continue to move forward. What I want is for people to realize is the following:
- 1 in 150 children is diagnosed with autism
- 1 in 94 boys is on the autism spectrum
- More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
- 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
- There is currently no medical detection or cure for autism
It's a big problem, yet one that receives scant private support:
- 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
I'm not saying these other health issues aren't important or terrifying to deal with. I'm saying that if people would throw a little more towards autism research, perhaps something can be done to help hunderds of thousands of kids. If caught early and actively intervened, the child's long term lifestyle can be drastically improved.
Federal funding:
- Total 2005 NIH budget: $29 billion
- Of this, only $100 million goes towards autism research. This represents 0.3% of total NIH funding
Federal funding for autism research has been increased in recent years, and for that I am grateful. But I will admit to being greedy and wanting more. If you find yourself lacking something to do, send an email or letter to your congressperson and let them know of your concern regarding autism and your support to increase funding should the issue be brought before Congress again. The world has a lot of problems, but some I suppose hit closer to home than others.
The thing that I am thankful for is Nik is a very happy child. We're lucky that he is also a very loving child, many autistic children shun anyone's touch. When he says "kisses, mommy, kisses" and "hugs, daddy, hugs" I get the biggest smile on my face. The "I love you"s are coming more and more frequently and unprompted, and that is something to be encouraged by. I just hope one day, we as a family can look back and remember the time when Nik had trouble doing 'normal' things, and be happy that he's perfectly 'normal' today. Other families won't be so lucky. Perhaps we won't be either, but I can hope.
For more information, please visit: http://autismspeaks.org/
Nikalys and me: