Hope: Early Intervention and Autism Diagnosis

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)

11 thoughts on “Hope: Early Intervention and Autism Diagnosis

  1. This was so good, Tracy. Hope is something the ebbs and flows for me with my ASD son. Last month was horrible and hopeless. Since the 2nd or so week in January things have been looking brighter…and that’s not necessarily due to improved behavior for a few weeks (oh, surely not). Just the cycle I’m on trying to learn and navigate this world. Hearing stories of hope from other moms is one thing that helps.

    I was in the camp of being grateful for a diagnosis, yet I still find myself grieving occasionally for what I sometimes feel his/our life ‘should have’ been like. It’s something I’m trying hard to stop. I agree with you about early intervention. There is nothing more important…unfortunately we didn’t get a definite diagnosis until he was 5 for several reasons. I wonder what could be different if we had more tools, and more importantly, education, available to us earlier.

  2. “I wonder what could be different if we had more tools, and more importantly, education, available to us earlier.”

    This is my crusade, Julie. It’s a refrain I want to make obsolete. Hang in there.

  3. And this is why I’m trolling through the process of finding and pursuing testing for Graham. It’s a little trickier when your child is one who “may” need help and is closer to “normal”. Nobody seems to want to be the one to say “he needs and should get tested” as though nobody wants to be the one to tell me he’s not “normal” when he’s so close to “normal”. But HELLO, I’m his MOTHER. I can tell something’s off! I’d love some answers and more importantly, some resources to help me know how to parent this anomaly of a child without losing my freaking mind.

    • Em, we should talk. Graham is four, correct? He should qualify at the local school district, and they cannot deny him being tested if you request it- it’s a federal law. Give me a call or email me.

      When I had Bean tested, all I had to go on was that I was his mother. They kept writing me off because he had typical verbal development, and they weren’t listening to me about EVERYTHING else. Turns out? I was right.

      • Well he’s already been tested and placed, but only for speech. As has Elliot. But Graham has all these markers for what may be ADHD or may be something else. I think some people think an ADHD diagnosis would equate to medicating him and that he’s too young for that. I don’t want to medicate him. I just want some help knowing how to be his mother.

      • True ADHD responds well to medication- unlike spectrum issues, which prior to later adolescence don’t show any benefit to drug therapy. (Specific SSRI’s have shown to help with certain issues as a person with autism matures, but it’s never prescribed for children).

        With Bean, I finally resorted to paying out of pocket for a specialist. That’s where I finally got the 30% below SD test results. She spent one appointment with him, doing a battery of medical tests and another whole afternoon interviewing, observing and testing him cognitively. It was worth it, a hundred times over. If you want some help finding a specialist locally, I could put out some feelers.

  4. I have nothing to add that you haven’t heard in person, so I won’t run my mouth here. But did you see that he let me tousle his hair this weekend? TWICE!

  5. Love you and love Bean!
    I love the mama you are to him, and the insight you are willing to share with others.
    Alex still talks about being with Bean in his cubby. I just loved observing his unique spirit…love him!
    You’re doing great mama!
    Love you!

  6. What breaks my heart is that “help, early intervention, school intervention in many small towns and schools DO NOT HAVE ANY HELP. As a teacher, I see what does NOT get done in my school on the back side of the Wasatch front.. Salt Lake City area has the most services but limited etc.

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