Finding Real Help for my Son
My previous post was the hardest thing I've ever had to write. I wrote about how my son had an autistic regression at the age of seven.
And now I needed answers. I was losing my little boy. At the age of seven, my baby was losing skills. He was quickly becoming disconnected from the world around him and the people who loved him. He was becoming aggressive. He was sick, body, mind and soul. And he was slipping away as we watched, feeling powerless to do anything about it.
"No medical reason"
Thankfully, we had an upcoming appointment with a Developmental Pediatrician. We made the appointment one year prior and we waited 12 full months for him to be seen. It was timely, I thought. We could ask the doctor what was going on with our child and perhaps get some answers.
She had a few helpful things to say. She noted that he had a very high level of anxiety, for which she recommended a combination of an SSRI and cognitive behavioral therapy. She referred him back to the same psychologist he saw two years prior for a re-evaluation. We asked her about the gluten-free casein-free soy-free diet and she agreed that it might be worth a try. She also said that fish oil was something that a lot of people were trying.
But to his recent neurological changes and concerning new symptoms, she gave little more than a shrug of her shoulders. Without so much as laying a hand on him, she declared that there was no medical reason for his autistic symptoms.
So, in other words, we were supposed to just accept his declining condition, medicate him and move on. Are you kidding me? She obviously didn't know me very well. To me, that would basically be like giving up on him and allowing him to continue to deteriorate. Is that what you would do if he were your precious child?
When your child is thought to be on the autism spectrum, it feels like all of his concerning medical symptoms are dismissed or conveniently explained away by "autism."
But what's causing the autism? Obviously, something is.
We don't know. We've learned a lot in recent years, but we still don't know exactly what causes autism and we certainly don't know what to do about it. And because people, especially the smart ones, don't like to say "I don't know," they say there's "no medical reason."
I know we don't have all of the answers. I would much rather be told that than be told there's "no medical reason."
I'm not mad at her. She was nice. She's probably a good doctor. What she said seems to be pretty standard for this day and age, when 1 in 68 children (1 in 42 boys) are being diagnosed with autism spectrum disorder (ASD) and we don't know what to do about it.
Autism is Medical
Autism was first described by Dr. Leo Kanner in 1943. He postulated that it was caused by cold, unloving mothers. How far have we come since then, really?
Not far enough, I say.
I think we can start by acknowledging that autism is medical, even if we don't know what to do about it. That's the least we can do for all the parents who know that their child is sick. There's plenty of evidence that autism is biological, so that's not really open for debate at this point.
Unless your child has seizures, he may not get much of a medical workup. The mere fact that one third of autistic people have seizures ought to be a clue that something physiologic is going on.
My child didn't have any labs done to rule out other conditions. He's never seen a neurologist.
Some parents of autistic children have become so distrustful of mainstream medicine that they've stopped taking their kids for routine medical exams. They're tired of having their concerns ignored or being ridiculed for wanting to try something. This is wrong.
The impact that this has on families is tremendous. For evidence of this, look no further than the tragic story of Alex Spourdalakis, a nonverbal, aggressive autistic teenager who was stabbed to death by his own mother and godmother. To be clear, I do not condone murder under any circumstances, but when I think about what might cause a mother to kill her own child, I have to think that it must have been sheer desperation. The makers of the film, Who Killed Alex Spourdalakis?, claim that the failings of the medical system are what truly killed the boy.
I have not watched this movie. I'm not sure that I can. But I do believe we can do a heck of a lot more for these kids. We have a moral obligation to see that their medical needs are met to the best of our ability and to search for answers as quickly as possible. We must be open to all possibilities. We must not be afraid to challenge our previously held beliefs about autism. It's for the kids, people.
For years I had read that the cause of autism was unknown and that treatment options included physical, speech, occupational and behavioral therapies. Other than that, there were few, if any, medical interventions available. Medications such as SSRIs and antipsychotics are sometimes used to control behavioral symptoms. These only address symptoms and have some pretty serious side effects.
It was time to dig deeper.
I had been vaguely aware that parents were trying various "alternative" autism treatments for quite a while. Ever since I watched Jenny McCarthy on Larry King Live talk about how she recovered her son from autism, I knew that biomedical autism treatment was a thing. That was before I had kids, so I didn't pay much attention because, of course, that wasn't going to happen to me.
Being a logical, practical person, I knew that anything worth trying had to make sense. I was willing to try anything that could theoretically help and wasn't harmful. And we were not in a position to waste time or money.
I took to the internet. I decided that in order to know what to do about autism, I had to figure out what was causing it – or at least find the most plausible theory. I decided that Question Number One ought to be "What causes autism?"
Immune System Link?
I found that there was no shortage of ideas about what causes autism. From plausible to downright batty, I read them all. I read about genetics, epigenetics, infections during pregnancy, complications during birth, environmental pollution, vaccines, heavy metals, Tylenol, circumcision, pesticides, plastics, leaky gut, candida, not eating enough strawberries, oxytocin (also see this article), antibiotics, the hygiene hypothesis, lack of parasites, the immune system, and more.
The immune system? Interesting. I had read about a connection between maternal autoimmune thyroid disease and autism. This was particularly interesting to me because I developed Hashimoto's thyroiditis after giving birth to Boy Wonder. I also have psoriasis, which is autoimmune.
This seemed like an important clue. What, if anything, did my autoimmunity have to do with my son's autism? Did my dysfunctional immune system somehow attack his little body during prenatal development? Did I have "anti-brain" antibodies that targeted his brain, as researchers have discovered in some mothers of autistic children?
I puzzled over this for a bit. Recalling what a bright, alert and social baby he had been, this didn't seem likely to me. He was born healthy and developed problems gradually over time.
Then I read that it's not just autoimmune thyroid disease in the mother that's associated with autism. A study from Denmark links other autoimmune conditions in the mother such as rheumatoid arthritis and celiac disease and a family history of type 1 diabetes to autism risk. Another study linked a history of autoimmune disease (especially rheumatic fever) in either parent to ASD. A meta-analysis performed in 2015 showed that having a family history of all autoimmune diseases combined was associated with a 28% increased risk of having a child with autism.
What was the nature of this association, I wondered. Could the same things that predisposed someone to develop autoimmunity also make them more likely to have a child with autism or be on the spectrum themselves?
I read that autoimmune disease is on the rise worldwide. Interestingly, autism is sharply on the rise as well. Some people like to say that the rise in autism is simply due to increased awareness and expanding diagnostic criteria. "No cause for alarm," they say.
We're Getting Sicker
I got to thinking about all the other conditions that are also on the rise, especially in children – ADHD, asthma and allergies, just to name a few. Childhood is not what it used to be. Just look around. When I was a kid, you could plan a birthday party without worrying about sending your guests into anaphylaxis. Nowadays, everyone and their brother has food allergies and entire schools are going nut-free. When I was a kid, I never even heard of "sensory issues," but now everyone seems to have them. Department stores are hosting "sensory-friendly shopping hours" so that sensitive guests can do their holiday shopping without crowds or music playing in the background. Target has even launched an entire line of sensory friendly clothing for those averse to seams and tags. Don't get me wrong – this is a good thing. We appreciate these gestures for our own sensory issues. But they didn't used to do this because there simply wasn't a demand for such things when I was growing up. How many kids do you know are in speech and/or occupational therapy? More than there used to be? Yep. Developmental disabilities such as ADHD, learning disorders, and other developmental delays are becoming more commonplace. One in ten kids (20% of boys) are being diagnosed with ADHD these days! Holy cow! Asthma, obesity, inflammatory bowel disease, type 1 diabetes, anxiety and depression are on the rise in children as well. According to this article, 26.6% of kids in a 2006 study group had chronic childhood health problems, including such things as obesity, asthma, and learning and behavioral problems. That's up from 12.8% of children studied in 1994. That figure more than doubled over a 12 year period!
And that's just the kids. Adults are being hit with increasing rates of cancer, heart disease, obesity, type 2 diabetes, Alzheimer's and the list goes on and on . . .
At what point do we ask ourselves what the heck is going on? In this day and age of medical advances such as robotic surgery and freakin' head transplants, why are we are getting sicker? Life expectancy in the U.S. is reportedly now on the decline. And if we live to see our golden years, we might just have Alzheimer's and chronic pain to look forward to. Nice.
Now I'm rambling and getting a bit off topic. Or am I? Maybe this is all related. Personally, I think it is. I think a variety of dietary, lifestyle and environmental factors are at play, but that's a whole new can of worms that I'll have to save for a future blog post. But think about it. We know that autism has a strong genetic component, but how is it possible to have an epidemic of a genetic disorder? It isn't. Clearly, something else is going on.
The Search Continues
Might this immune system involvement explain why Boy Wonder developed a sudden, new allergy to grass and a new sensitivity to laundry detergent when he went through his autistic regression?
I became convinced that autism must be a disorder involving the immune system and, obviously, the nervous system. This seemed to be a big piece of the puzzle.
A bit more googling. Ok, a bunch more googling. Over the course of weeks, I read research papers, scientific articles, blogs, books, and just about anything I could get my hands on. It became a bit of an obsession for a while. After all, I'm neurotic . . . um . . . I mean . . . thorough, if you recall. I can't even tell you how much time I spent on the internet, but I was on it until I came to this:
And juuust before I got there, I came across the website of Dr. Kendal Stewart, otolaryngologist, neurotologist, skull-base surgeon and neuroimmune specialist.
This is it, ya'll. From someone who's been to the end of the internet and back, this is what's making the most sense out there. Dr. Stewart won the internet.
I obsessively listened to his podcasts and lectures and decided that everything he had to say made perfect sense. He's putting together so many pieces of this puzzle. And reportedly, he is doing some really amazing things in his clinic.
We felt so confident that Dr. Stewart would have some answers for us that we would have traveled across the country to see him. In fact, many people do travel from all over the country and even the world to see him, but he just happened to be local! The decision to make an appointment for Boy Wonder was really a no-brainer. After discovering him over a weekend, I was on the phone with his clinic first thing Monday morning.