Photo on 2013-01-23 at 15.48 #3

I get a lot of emails from folks asking about Autism. There is a wealth of information on autism that can be gleaned from a myriad of sources- I’m not even an authoritative one, just a mother who has documented the experience of helping her son. But one of the drums I have beat the most consistently, and will continue to pound at every opportunity, is Early Intervention.

A lot of parents express grief at an autism diagnosis. I’m sure this is entirely normal, and to some extent, there might be a perceived loss over expectation and dreams one might have had for a child. (I would submit this applies to all children, and all parents, and is not particularly unique to children with Autism- we just simply have to face it earlier.) I know there are parents who strongly resist a diagnosis, not wanting their child to be “labeled”- frankly, this perplexes me. With my own son, getting a diagnosis was the answer to everything. When you have a baby who so clearly is developing differently than his or her peers, finding out why lifts a massive parental, psychological and personal weight. To be honest, while I can remove myself enough to abstractly understand, when parents resist helping their child (make no mistake, rejecting a diagnosis is resisting help) it makes me wonder who they are thinking of first. Their child? Or their own hopes and ideals of perfection? I am admittedly impatient with parents who put their own preconceived selfish ideas of who their child should be ahead of the child’s actual needs for one main reason: Early Intervention works.

The longer a parent resists the “label” for a child who might be in need of help, the worse the long-term outcome for that child. Autism rates are climbing, and yes, there is debate on whether this due to actual physiological increase, better diagnosis, or over-diagnosis. I have but a single thought on that: It doesn’t matter. Statistically, it might, over time- but to a child? No. Early Intervention is so important, that casting a wide net, perhaps getting some children who might not be fully on the spectrum, but in the process catching those that are- is far and above worth it. Early Intervention is critical to the child who has ASD and his/her future development. Critical. And for the occasional child who perhaps was just going through a phase? It won’t hurt him at all- it’s a little extra boost intellectually and developmentally. For me, that’s worth the odds.

In human development, it’s very difficult to show control groups— no researcher wants to sacrifice a human child to show what would happen without therapy. Yet we have enough data to support the importance of that therapy without debate.

In my own son, while I will never know how he would have developed without intense Early Intervention, anyone who has been reading this site long enough can see the overarching change for themselves. It’s that obvious, and that bright. When he was diagnosed at two years old, he scored more than 30% points lower than the baseline for a child to qualifies for services. At 2 1/2 years old, he could not make a mark on a paper with a crayon because his brain could not figure out the complicated process of enough pressure to hold the crayon in his fingers, enough downward pressure to make a mark, and the muscle movement to then drag the crayon down the paper. He could not do it.

He walked on his tiptoes. He could not abide bubbles in a bath touching his skin, let alone anything with seams or anything loose. He lived in his sisters tights. Anyone remember that? For seven years, he’s received therapy five days a week. For the first three years after his diagnosis, he attended a special school for children with Autism, and received 6 hours a day of specialized instruction. When he finally started at a typical school, it was with a classroom aid and pull-out services (this is where a SpecialEd child is removed from the primary classroom to a secondary classroom with a specialist for the needs laid out in their IEP).

He worked hard- he continues to work hard. Here we are, nearly seven years later, and he knows he is different. I don’t know how other parents deal with it, but I’ve been honest and open with him about Autism, what it is, what it means, and how his brain is different. He thinks this makes him special. And he’s right. He is never going to be a typical child, teen, nor adult. Autism does not go away, and there is not a cure. His mind is wired in a different way, and he excels at his own areas, and is challenged by things others find easy or inconsequential.  He wears noise-canceling headphones in church. He will likely always resist others touching him. He might always prefer tight, smooth clothing. But at the same time, with seven years of therapy, he can now tell me when something is making him anxious, instead of retreating to a corner to hit his head.

He smiles a genuine smile more often now, where once he had a grimace. He can handle bubbles in the bath, and he ate a strawberry yesterday (!). He sang- actually sang in school, instead of hiding and rocking. He curls up next to people he feels safe with, and will even tolerate a hug and a kiss now and then. He write with a pencil now, and can cut with scissors. He tolerates the children at the bus stop not being orderly because he can communicate to me how crazy it makes him, and we develop coping plans. People meet him and on first impression now tell me he “seems pretty normal”. Yep. Amazing, right? Early Intervention.

I lay out these bona fides because I want other parents who are just beginning this path, or who are resisting the “label” to not be afraid. With the label comes the help, come the specialists who have studied children like yours and mine. With the label comes therapy that will help your child create new neural pathways that will profoundly influence their lives later, and give them a chance to not just function and survive the world- but to thrive. With the label… comes hope.

Tracy McKay Family (102)

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