My 4 year old son, Julian, was diagnosed with autism about 6 months ago. Julian is completely nonverbal. Since then, I’ve joined support groups, researched his condition, and talked to multiple professionals in the field.
Now, I’m a college educated woman. I consider myself to be rational, smart, and resourceful. But the more I research, the more questions I have. With every new article I read, I feel like Alice sliding down the rabbit hole.
The avenues of research range from genetics to environmental… from gut health to mom’s health during pregnancy. The sheer magnitude of research is completely unsettling to me.
The more I read, the more I ask “Why?” Not in the context of “Why does my baby have autism?”
I have real questions about the causes, diagnosis criteria, and conclusions made from ASD testing. Here are a few I’m currently wrestling with:
1. How do doctors conclude that children who show deficits from birth, have the same condition as children who regress later in toddlerhood? Julian has been delayed since birth. He didn’t reach certain milestones on time (or ever.) There are other children who reach their milestones, learn how to talk, and then go backwards. Logically, that seems like two different processes to me.
I have the same question in regards to bright, socially awkward children having the same diagnosis as low-functioning, nonverbal children. Again, It seems to me that there are different functions occurring.
I know there is a ‘spectrum.’ But that explanation makes me even more confused. I want to know the reasoning behind the decision to combine so many different attributes into one diagnosis.
2. How did the number of autism diagnoses explode? I recently read that 1 in 68 children is now being diagnosed with autism. That increase can only partially be explained by raised awareness and improved testing. What else is causing this number to grow?
This is where I become confused. I’ve read articles linking autism to heavy metals, vaccines, pesticides, household cleaners, pollution, processed foods, gluten – The list goes on. As a mom, I don’t have the background to comprehend these positions. I also don’t have the time to become a neurologist, nutritionist, environmentalist, and geneticist.
3. Why isn’t my child able to point to things he wants? That’s a pretty basic skill. What is actually blocking his brain from showing me what he wants? This brings up other questions I have about related disorders such as dyspraxia, PTSD, and OCD? How are they all connected?
4. Why isn’t there consistency among professionals? There are reputable doctors claiming that parasites, heavy metal concentration, and poor nutrient absorption may be to blame for autistic characteristics. But when I ask Julian’s doctor if we should test for any of those, he simply says, “No.” Why is there such a disconnect?
5. Why do some children need to bite and self-harm? The range of self-stimulation is astounding. Some flap their hands or rock. While others need to bite, chew, or even harm themselves. What is the process behind this need for ‘input,’ as they call it in the OT world?
My list of questions goes on and on… It’s frustrating to the point that I feel like going to medical school myself.
To make matters more confusing, Julian has an identical twin brother, Dominic, who presents with similar delays and behaviors. Dominic was tested for autism, but was found to not “have it.” (Oh, the confusion!)
Please don’t get me wrong. I’m thankful that there are doctors working tirelessly to find causes and treatments. And I realize that research of the brain is, by nature, hard to perform. I’m also thankful that, even with a relatively low understanding of autism, there is still a diagnosis allowing those affected to gain access to treatment.
I feel certain our hard-working researchers will make major breakthroughs. As time passes, there will be a better understanding, a greater consensus, and different diagnoses. Hopefully then they will be able to say, “Your child has _______, a condition formerly included on the autism spectrum.”
What are some questions you have about autism? What resources have you found helpful?