Autism, Again

You may recall that Zoey’s Asperger’s/Autism diagnosis came as a result of Alden being a part of a study for younger siblings of children with Autism. They evaluated her to see if she fell on the spectrum in order to see if we were eligible for the study. We thought they’d likely rule out Autism but, instead, they said, “Oh yeah, she’s on the spectrum.” So, we qualified for the study and Alden spent a year being a part of it. Every three months we would go in for a few hours and they would have him play with different toys, perform various tasks, etc while they evaluated his social interactions, eye contact, motor skills, speech and language, eating, and a host of other things. Alden was in the “control group” meaning we weren’t receiving any kind of additional interventions (although we were free to seek interventions outside of the study if we felt he needed them).  The other group received weekly in-home training and education on ways to encourage speech and social development in their child. Since younger siblings of Autistic children have an increased likelihood of also being diagnosed as on the spectrum, the study was looking at whether there are easy, non-invasive ways for parents of higher risk kids to start encouraging language and social development even before an Autism diagnosis could be made. Then, if the child does receive a diagnosis later on, they’ve already gained some ground via super-early intervention. If the child doesn’t receive a diagnosis, no harm done.

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At eight or nine months old, Alden was saying “mamamama” and “dadadada” like any typically developing baby. He was also starting to try and mimic a few other words. At twelve months old, all that stopped. He stopped saying any recognizable words at all. He would still babble incoherently, but there were very few attempts to mimic actual words and he had no real words for the next eight months. We joined the autism study just after Alden’s first birthday. At our second visit three months later, they lead researcher on the study wanted to know what therapies we had him in, especially speech. She was certain we would have him in therapies because of what she had seen during the initial visit.

When Alden turned 20 months, it was like a switch flipped. All of a sudden he was saying real words again. This was very quickly followed by stringing a couple words together, and then three words. At about 26 months old he had caught back up to an average 24 month old’s speech abilities. He did all this without any formal therapy. We just kept talking and reading to him, encouraging him to try and speak for himself.

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At that 26 month old visit, our year with the study came to conclusion and they finished off in April with a formal Autism evaluation. I had a hunch what they were going to say before they even called to say they’d like me to come in and receive the evaluation results in person. They believe Alden also is Autistic. The diagnosis is provisional, because he is so young and because he is borderline. Mild autism, quite possibly Asperger’s just like Zoey.

He makes eye contact, sometimes. He can use gestures along with his words, he just only does it about once out of eighteen times they would have liked to see it. He uses repetitive speech and echolalia, as well as ending words and statements on an “up-note,” as if asking a question. The more interested he is in a toy, the less he will interact with other people around – even when prompted – while a neurotypical child would be more excited to “show” their cool toy to you. He becomes very engrossed in a single toy and seems to lose interest and awareness in those around. He’ll do imaginative play appropriately – for example, pretending to bathe the baby doll in a tiny tub – but then he’ll repeat the same scenario over and over again. Keep washing the baby, keep washing the baby…he doesn’t evolve the imaginative play outside the simple script of what is most obvious to do. He has very strong preferences – bordering on fixations – for playing with cars and trains to the exclusion of playing with other toys. He also has a fixation on the color green. His receptive language skills are much more advanced than his expressive speech – at just newly two years old he had the understanding of an average three year old, but could only speak like an average two year old, creating a discrepancy between the two.

This diagnosis happened to coincide with the single hardest parenting week I’ve yet had. Zach was out of town for four days for work and I was doing all the parenting on my own. Alden had been getting progressively more fussy and difficult, having tantrums and meltdowns over little things, for about a week or so. The first day Zach was gone, Alden screamed. He screamed all. day. long. Not just a “tantrum because I didn’t get what I wanted and I am two” scream. This was a rage-filled, inconsolable, banging his head against crib rails and wood floors, ongoing for the entire day, cannot distract him, cannot calm him, cannot even get him to eat, kicking, hitting, flailing scream. And it lasted, more or less, the entire day. And then it continued, every day. I would hear him wake up through the baby monitor. He would be calm and talking in his bed. I’d open the door to his room – nothing else, just an open door – and the screaming would start. Mind you, I still had to get Zoey off to school on the bus, take Eleanor to preschool on time and then pick her up two hours later, do things around the house like laundry and errands like grocery shopping. I couldn’t do these things at night while the kids slept because there was only me – Zach was out of town.

I nearly lost my mind. The rage-filled screaming fits were so violent and so long. Even after Zach was back home, they continued. Easily 50% of my days with the kids would be spent trying to find a way to calm Alden down. The worst part was that I would never know what would set him off. Opening his bedroom door or trying to change his diaper in the morning. Telling him he couldn’t have something. Putting him in the stroller or car. Handing him a cup that apparently wasn’t the one he wanted. Any little thing could do it. It was so physically and emotionally exhausting. I felt like I was drowning, like I wanted to run away. I’ve never felt like that as a mother before. Like I just wanted to give up. It felt horrible.

This continued for about three weeks until, one day Alden woke up and didn’t scream when I went into his room. He had a few meltdowns later that day but they were shorter, less intense. Each day, they got progressively milder, easier to weather, easier to predict or to distract him out of. And then they pretty much stopped. Alden is working on getting molars, and I think he may have been experiencing pain from it during those three weeks that was making him more sensitive. I don’t really have any other explanation. But I do know that, teething or not, those meltdowns were not typical. They were not the usual child’s response to molars, or to anything short of extreme torture. Alden was suffering and struggling and couldn’t tell me and couldn’t cope so he let it out the only way he could. Seeing my sweet, happy, easy-going, laid-back baby so suddenly change into this tormented, screaming, violent child was utterly heartbreaking for me. I didn’t recognize him. I didn’t know how to help him. And all I could see when I watched him like this was Autism. All I could think was, “He is Autistic. He is struggling to communicate and to cope with something. I don’t know what it is so I don’t know how to help him. And he can’t tell me.”

So, a few days into this, when they gave me his diagnosis, I was not surprised. I already knew. I’d already seen his struggles with speech, his parallel play rather than cooperative. I’d already heard him get stuck on a word or a phrase and repeat it over and over until I could find a way to shift his attention. I’d already noticed how fixates on cars and trains and wheels that spin. I’d already witnessed his violent meltdowns that were highly disproportionate to the situation, even for a two year old. I knew.

And my sweet boy, I do not love you any less. Rather, I just understand you more. I see your struggles and I will never, ever, give up on you. We’ll struggle through them together. You are still my sweet, happy boy. Sometimes that just gets hidden behind the ways the world affects you. That’s okay. I can still see you. I will always see you. I look at you and see my son, not a diagnosis. And you are perfect, just as you are.

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