Annual Reflections

New Year for me is a time of reflection. It's a time to look back on what we did last year, of what we achieved, of what we tried and the things we never got to.
2014 for our family was a very busy one, but one that was answer-packed.

The two biggest pieces of knowledge we learned regarding our son came in the latter half of the year.

- Our son has a pretty significant Lyme infection.
- Our son has folate receptor antibodies.

For me, knowledge is power. You can treat the things you find, but only if you look for them. You need to target your search, it simply isn't sensible to test for every condition known to man (and it's also crazy), but, you do a little CSI work and let the evidence lead you.

Since very early in our autism journey, I have learned to let go of the label. Our son has a collection of symptoms that together meet the diagnostic criteria for a disorder they call 'autism'. The main problem I have always had with this diagnosis is that it is unscientific. It is simply looking at a person and observing their behaviour. It includes no testing, no bloodwork, no genetic profile. Over the years, the DSM has expanded too much. Normal human processes such as grief can now be classified as a psychiatric illness indicating a need for medication. I reject this notion.
For me, behaviour is founded in physiology. Biology dictates behaviour. If you can figure out the biology, sometimes, you can improve the behaviour. Think of something as simple as a menstruation cycle - a person's behaviour can change so enormously for just a few days a month.

I have always taken the approach of treating the biological problems first, and in turn, we've been rewarded with an improvement in the symptoms called autism.

Well, over the past 5 years, we've seen a huge improvement in almost every area - in social skills, in self-awareness, in independence, in cognition, in behaviour, but most importantly - in health. Our son is healthy.

So, back to the past year's knowledge acquisitions.

We treated the Lyme, after discussion with several doctors. We didn't notice any changes after testing. That is both good and bad. It was great that we saw no negatives. I've heard pretty bad tales of people starting antibiotics for Lyme and their system crashing. We didn't see that. We also didn't see any gastrointestinal problems. We added a ton of probiotics afterwards (and continue them) to ensure that we don't get a yeast problem emerging after essentially wiping out our son's gut flora. Here's what concerns me about seeing nothing. Did we get the Lyme? Did it have any effect at all? I guess we need to just trust that we did and now be super careful to watch for any other symptoms that could indicate a lingering problem. One of our son's problems that tipped us off was knee pain. I can say that we haven't heard any complaints of knee pain, and that is something we can continue to monitor. If we see signs in the future, we can always re-attack.

We also switched our son from simple folate supplements (5-MTHF) to a blended medicine called Cerefolin, which contains 5-MTHF, N-Acetyl Cysteine and the Methyl form of B12. It's a little bit of a dream pill, aside from the fact that I have to crush these monsters to get our son to take them in applesauce. Since increasing his dose of these, we have seem improvements in pragmatic language and social skills, which is interesting. More than this though is the comfort of the knowledge that this is not a shot in the dark, knowing that giving these supplements is warranted in quite a big way. We've been dosing some form of activated folate for a long time and increased it when we learned of the MTHFR genetic variations we both carry, We've always seen improvements with it. It's nice when the gains increase and continue.

I've heard so many things about autism over the years. As time has gone on, my belief in a biological basis has only been strengthened and I do not see this changing in the slightest.
With time though comes a disregard for how others' comments affect you. When we started this process, I felt self-conscious. I doubted. I wondered if we were indeed delusional, sad, unaccepting, unloving, desperate for a child other than our own. I took each attack on biomedically engaged parents personally and I would respond. Now, I don't. I know that the ultimate love for a child guides a mother who wants answers. I don't doubt our approach. Not for a second. The proof stands in front of me. A child who was diagnosed with moderate to severe classic autism just a few years ago played in a hockey tournament this past weekend. He scored 2 goals in his first game of 8 in total over the weekend. Not a 'special' league. A regular ice-hockey team. If I'm wrong, then I'm just the luckiest person on the planet. My son makes me so incredibly proud. He's funny, engaging, imaginative, expressive, loving and social. He's so much more than a label given by a lazy doctor 5 years ago.

If you are even thinking about a biomedical approach for your child, do it, please. Make it your resolution to try something new, because, at the end of the day, you will not move mountains with behavioural therapy, even if it is somewhat helpful, because, whilst biology can determine behaviour, behaviour cannot alter biology. Look at the cause, not the symptoms.

My wish this year is always for answers and progress. For our family and for yours.

Happy holidays!