As I mentioned the other day I got my first, real, ask me anything question. (I have received private comments through this feature on my blog before but never a question.) I am so thrilled to have been sought out by someone for input. And it was a great question too! Something I have never addressed on my blog before.
Judith S. asked me the following:
I found your blog on reddit and love it. You are a good writer. I have a question if you could answer it either online or privately I don’t mind either. You said in a post that mia was diagnosed very early. How young was mia? What behaviors tipped you off? What are the autism warning signs? I have a two year old baby boy, he’s my world but some behaviors make me wonder, he is very healthy and happy but… Your advice would be so appreciated. I love your posts they are super positive.
Well, Judith, I don’t even know where to begin. I guess I could say that I knew something was “off” “amiss” “wrong” “lacking” in Mia’s development fairly early. Actually, really early, around the age of six months. Sometimes people do not believe me when I tell them what age I began to expect that something was different about Mia – especially people who know that Mia was my first child. They find it hard to believe that an inexperienced mother could diagnose something like autism in their child at such a young age. They find it hard to believe that someone with no experience in child development could see signs in any child at that age. But, to that I’ve always said, never underestimate a mother’s ability to know her child. And the truth is, I knew something was “off”.
Now that isn’t to say that I had completely come to terms with it at that age. I went back and forth for quite some time deciding if I was just a complete worrywart or if I was on to something. I’ve said it before and I will say it again but I spent countless hours online looking for an answer. Googling every single missed milestone or “strange” behavior, looking for the one website that would give me answers. The same word kept coming up, time and time again. And it was a scary word. The word was: Autism.
It was scary because I didn’t know then what I know now about autism. And that is that it isn’t the death sentence some doctors and most of society would have you believe it is. Autism means thinking differently; and difference is what makes beauty in this world. But that is a different post entirely and I am beginning to get off topic (which I do easily.)
The behaviors that were exhibited by my daughter at this early age were simple. She didn’t make eye contact. And she didn’t “coo” back to me when I talked to her. She wasn’t interested in interacting with me too much. She wasn’t interested in interacting with anyone really. She rolled over on time. And sat up on time. But that was it. After hitting those two milestones she began to fall behind. She didn’t crawl until she was over a year. She didn’t walk until she was 19 months. She had low muscle tone. She didn’t wave or point until she was around two. She didn’t speak until she was over four. (And she still doesn’t functionally speak all of the time.) I have heard it said that some babies, later diagnosed, have trouble feeding, but Mia never did.
But it wasn’t just the missed milestones that alerted me that something was, as some would put it, tragically amiss. She had “odd” little behaviors. As an infant her eyes darted around the room, never settling on anything. She would constantly rub her tongue on the top of her mouth and lips. When she was old enough to sit up she would hold on to two toys, one in each hand, and flap her arms while simultaneously rubbing her feet on the carpet, in what I now know to be a “stim”. She appeared to be deaf most of the time, but other times it was more than obvious she could hear properly. And she never slept; going to sleep well after eleven o’clock (no matter how hard I tried to put her down at an earlier hour) and awaking in the morning around six. Napping during the day hardly ever happened.
It’s hard for parents, mothers especially, I believe, to accept that their child, the one they nurtured and created in their own womb is somehow “defective”. (Though this is a word I would like to stay away from now, it is nevertheless a word I felt then when thinking about it.) I felt so horribly wrong. As if I were in some way responsible for the missed milestones and odd behaviors. But luckily, I knew early on, as you do, that my child was happy and healthy. And I hung on to that. Grasping onto those words so hard that before long there wasn’t much left in them. It was at that point, sometime around her one year old wellness visit, that I sought out the advice of my daughter’s pediatrician. She set up an appointment for Mia with a local group run by Easter Seals who work with children under the age of three that are falling behind. She was ultimately evaluated by a group of well meaning women who rated my daughter on a piece of paper and found her lacking. It hurt, but it wasn’t unexpected. And thus Mia was accepted into a program called “Help Me Grow”. It still took me awhile, and the accumulation of a few more “odd” behaviors, to come to terms with that frightening word, “autism”. (Behaviors like endlessly lining up toys rather than engaging in pretend play with them. Or, wanting to watch the same five second clip on a TV show over and over and…) And one day, while she was working with her therapist I blurted out what I finally knew in my own heart to be true; my daughter had autism. She was one and a half. They directed me on what to do next, and where to go. Six months later she was diagnosed; one day after her second birthday.
I must add that I am not a specialist. I am not a doctor. I am only a parent telling my story. And I do not have all the answers – remember too that it is called “the autism spectrum” for a reason. What behaviors and milestones my daughter missed, or has, may be the exact opposite in your experience. So, if you are feeling that there are some odd behaviors in your child or missed milestones I cannot stress to you enough to bring these up to your child’s doctor. If they are of the “wait and see” attitude that unfortunately is still prevalent in pediatricians even though the number of those diagnosed is steadily climbing, then I would tell you to call your insurance company and find a developmental pediatrician and make an appointment. They do unfortunately have long waiting lists so do this as soon as possible. You can also seek out an appointment with a neurologist. But whatever you do please remember these few things: One) Early intervention therapies are key to success, Two) You are not alone, Three) You are not at fault, and Four) Any move in this direction is in your child’s best interest. Just asking me these questions prove to me that you are on the right track. Whether or not it is autism or something else, or even nothing, seeking out answers to questions you have no answers to is a move in the right direction. Please seek out help from a trained professional; and deal with your feelings about what answers they may give you later. Crucial time could be lost while you are trying to deal with the label that COULD POTENTIALLY be placed on your child. And if they do diagnose him with anything then I strongly urge you to remember that that label changes absolutely nothing about your son. Not one little thing. Not one iota. And always, always remember difference is what makes this world beautiful.
I hope you found at least one thing in my answer helpful. I really wish you, and your son, the best of luck. Thank you so much for the question. (And Compliments too!)
The following link has a thorough list of “The Warning Signs” or “Red Flags” of autism. It even answers some other questions – like where to go and what to do next.