Hi it’s me, yes it’s been years. It’s not that I don’t want to write or that there is nothing to say- I think that when your children are first diagnosed there are so many big feelings and fears and interventions to get started- and my blog has definitely helped me process all of those things over the years. But then you get to the nitty gritty and realize the feelings are not going to go away, it is not going to get easier and frankly there are days I have nothing inspirational or even positive to say. I am more used to this life- I am used to the difficulty, I am used to waving to parents of typical kids from a distance, used to the pain of not having those moments. And people don’t really want to hear about it if we’re being honest. It’s like oh great here comes bummer girl. So you smile even when you are hurting because unlike many other parents whose children are diagnosed with something- this is not going away, and the chronic nature of the challenges somehow makes it socially acceptable to expect families to act like it’s not happening every. Single. Day. But I assure you, it is.
But I digress. I am here to share that I was outraged momentarily at my new job today. I have started writing clinical content- so medical criteria for therapies, medications and as today would have it, molecular diagnostic tests. As I began my research today (or as I call it currently, floundering around), I was looking at the tests listed in our criteria set and there was a test for autism. Fascinating. So I click on the criteria and lo and behold there is limited evidence that the information obtained in the test would impact care or even really be important. What the actual F. Then it hit me- it’s completely correct. It would be one thing if the medical community had identified what causes autism- a deficiency, mutation, deletion, but of course that is not so. And as I talked to my mentor about correlation and causation it struck me (again) how many children are still being lumped into the developmental delay category that then progresses as they get older, to autism. When I tell you that every time I research a mutation, or deficiency for work that there is inevitably an article about it that mentions autism I am not exaggerating. And the diagnosis remains a cluster of symptoms. So how can they develop a blood test for that? It makes my blood boil- if this was something starting in grown men and affecting their ability to procreate- it would have been nailed years ago. Instead, we continue to limp along with this “diagnosis”. And the longer I have existed as a special needs parent the more I have come to recognize that “all autism is not created equal”. For instance, there are children like Nate who developed typically until 18 months and then had sudden and dramatic regression. Then there are children born prematurely or with medical complications who end up with developmental delay and “the symptoms of autism”. Or the children who start on solid foods and develop the symptoms of autism which miraculously improve when gluten and other nutritional components are eliminated from their diets. Or children with brain malformations who yes have the symptoms of autism but also face so many additional challenges. It gets to the point where it feels like an insult. I mean why bother actually defining our children’s diagnoses which you know would make for more accurate and effective research when we can just lump it together and you know, delay meaningful progress. Then we started talking about autism’s similarities to dementia and Alzheimer’s disease and how in many ways that diagnosis is being over generalized and likely missing multiple different diagnoses too. It’s a cluster of symptoms. But the fact of the matter is that Alzheimer’s research gives me hope for autism- because I do believe what is happening to the brain has to be similar in some ways. And I have faith they will figure Alzheimer’s out- not because it’s less complex, and call me cynical if you want but because when a person develops dementia they have already shown the world the valuable human being they are, they have words, and their families can advocate for the person “they know” while our kids have often never had the chance to be who they might become. We spend so many hours as parents trying to convince others of how amazing our kids are- you just have to look, really look. I mean both of my children were already on drug trials for autism with medications developed for Alzheimer’s. Think about that.
In the meantime, lumping our children into one big diagnostic category has created yet another way to make autism parents feel inadequate. Because some of these children with “the symptoms of autism” miraculously get better- maybe not 100%, but all the sudden speaking, thriving in mainstream classes, losing their ieps, playing typical sports. While others remain in their same pattern of fighting for years for every little step of progress. So what is a parent to think? How are they to act? Happy for the other families of course. But I can tell you what is going through my mind. It’s not shocking really. What did I do wrong or not do that causes my son to lack such progress? Even if my intellectual mind knows everything I stated above, my mommy heart tells me that I missed the boat. That I just didn’t “find” my sons magical “fix”. How cruel is that really?
