Why Autism Awareness?
The story of our son Alexander started when he was born at exactly 37 weeks. He spent the first week in the hospital receiving phototherapy treatment for his bilirubin levels. After a stressful week in the hospital, trying to get nursing underway, and, oh yeah, realizing we had a newborn, we came home to our small, shared apartment.
I was slated to go back to work at eight weeks postpartum. We had realized, however, that Alexander was having some difficulties, and spent many hours a day irritated and crying. The doctor prescribed medicine for reflux and told us he was experiencing colic, and that it would likely go away by the time he was three or four months. We were new parents, so the explanation seemed sufficient, though it seemed off that our little boy didn’t really seem to enjoy being held, but had an equal aversion to being put down.
My husband and I would often wonder if we just didn’t get the parenting thing…we were doing everything we could, and it just didn’t seem to be making a difference. Our mantra became, “At least he knows we love him.”
By the time Alexander was a year, he was succeeding at many typical milestones. He was walking, high-fiving, and learning his first few words. We were having some concerns with him not really playing with toys, getting frustrated, or doing things like turning his walker over to look at the wheels. I told my husband I thought he had an “engineering mind,” as he was constantly interested in how things worked, rather than what they did. He was also not showing any more affection towards us. It was heartbreaking. We just wanted our little boy to want a hug, or to sit with us for a moment. This was fought with squirming, screaming, and lots of frustration.
Alexander’s brother was born when he was 15 months old. He didn’t seem to pay much attention to him, except when he screamed. If Atlas was crying, Alexander was sure to follow suit.
By 18 months, Alexander was saying about 10 words, and had lost his ability to say colors. His frustration seemed to be mounting, and he started to throw things and having exceedingly scary tantrums. We brought up concern at his 18 month well-child visit about his language.
We were told that he would catch up, and that boys are often busy with gross motor activities and don’t yet care about communication. When we asked why he wasn’t saying certain words any longer, the doctor told us those words had probably just gone into long-term memory and he didn’t feel a need to say them.
Fast forward to 20 months. Alexander’s tantrums were getting worse. We were highly concerned with his behavior. He would kick, hit, bite, and scream at the top of his lungs. There were times when we had to stop him from banging his head. I called the doctor, and told her that we were worried about the increasing level of emotion and violence he seemed to be demonstrating on a frequent basis. (There were whole days when it was one tantrum immediately followed by another, and another, and another…)
The doctor told me that he was likely experiencing symptoms of getting closer to two years old, and that it was probably an exertion of his independence.
When Alexander was 22 months, I happened to be in a graduate class on inclusive classroom settings. One day, a group of parents came in to discuss the unique needs of their children in the school system. They were all singing praises about a local early intervention program.
The next day, I contacted the early intervention team and started the long journey of waiting. Yes, waiting. There’s a lot of research to suggest the earlier the better, but unfortunately it’s nearly impossible to get anything bureaucratic to move faster than a snail’s pace.
Right before his second birthday, Alexander got a lengthy early intervention support evaluation. Even though we knew something wasn’t right, (his tantrums, behavior, and lack of speech were more clearly defined as different than the norm by age two), it was still one of the most heartbreaking things to come to terms with when we read exactly where he was developmentally.
I’ve spent many times crying, looking at the developmental ages and abilities in writing, thinking of the sheer stupidity of allowing “wait and see” to go on so long.
About a month after his second birthday, Alexander’s one day a week, one hour a week, therapy started with the early intervention team. Around the same time, he had his two year well-child visit, in which a M-CHAT screening was completed. The doctor told us he had screened positive for autism, that it has a high false positive rate, and that we should talk to his early intervention team to see what they think should be done…Yes, folks, I’m saying she still didn’t refer. I didn’t know there was even a diagnostic process, certain people who needed to evaluate him, and what exactly all that entailed. I didn’t even know autism was even really on the table as a possibility, as no one had ever really explained it to me. The word had been thrown around, but what does it mean? Finally, the early intervention team told me to call her and request an autism team evaluation, based on their recommendation.
At the end of March of this year, Alexander finally had an in-depth team evaluation from some of the best in New Hampshire. From the time I self-referred to early intervention, to the time we actually realized what we were dealing with was over six months.
A month later, we’re still trying to come to terms with what this means for Alexander and for our family, and still waiting for the 10-12 hours of ABA he’s supposed to be receiving. We look back, and everything seems so much more obvious. So many signs were there. How come someone didn’t tell us? How come we didn’t realize? How come it takes so long to get treatment started, even after the process is started?
This is why autism awareness is important.
The earlier, the better; and even when parents or a pediatrician take the first steps, it could be many months before adequate support is in place.
We weren’t aware of autism, we were just concerned with eccentricities.
Our doctor wasn’t aware of autism, he just appeared to be a late bloomer.
Our family wasn’t aware of autism, he just seemed to have a hard time adjusting to visits.
Our friends weren’t aware of autism, we just seemed to have no control over our child.
Every child deserves opportunity.
Every family deserves understanding.
Every community deserves awareness.