Why Do We Promote Autism Awareness?

Jennifer Jordan April 16, 2013
Why Do We Promote Autism Awareness?

Why Autism Awareness?

Alexander’s Story

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.

 

 

 

 

 

One Comment »

  1. Katy Clyde August 12, 2013 at 3:57 am - Reply

    Our eldest son was a bit weird from the get go. More interested in the workings of toys rather than playing with them. He would NOT be cuddled or rocked to sleep. His speech patterns developed in a unique manner. Rather than progressing from one word to two or three to sentences like most children do, he would mimic our speech with natural conversational dynamics like bossy sounding commands, insistent bits of information, and upward inflection at the end of questions, and even telling jokes followed by crazy manic laughter — except it was all in babble. Around age two he started replacing some babble with actual words, like bah bah manamanahy shoe? Agabaga fromfrop my didi? By the time he was four it was almost all recognizable English.

    By this time other developmental milestone were also following a completely different schedule. He would NOT play with other children. In fact he bit another child because she kept taking legos off the cart where he’d carefully arranged them. (See, he’d learned the week before that toys must be put away nearly before leaving play group. This day he’d gotten bored and wanted to leave and putting away the Legos was his ticket out and this little girl was insistently and deliberately thwarting him!)

    A few weeks later he was walking around with a crocheted blanket on his head and ran into the wall, resulting in a black eye. Now, mind you we’d been trying for months to get him into the parish early intervention but we were pushed off repeatedly and were still waiting for an evaluation. Long story short. Some busybody bitch neighbor reported to us to child welfare for the black eye and they did not accept Will’s explanation that ‘the wall ran into me’ as valid. Obviously he was abused and promptly put in state custody. And immediately and magically a spot opened up for him in the EI program. Poor kid with such rotten parents. Somebody oughta do something!

    A few months later when he was returned, the good, kind, and observant folks over at child welfare told us they suspected might have some developmental issues. (Ya think? Just maybe? Good thing you observed that because hadn’t a clue. Which of course we’d been trying for months to get him into EI. Morons.)

    Skip a year or so down the road. He’s mainstreamed into a neurotupical kindergarten. Not doing well at all. We took him to our family doctor at the army hospital who thinks he may have a touch of ADHD. The rest of his quirks are most likely a result of completely inept parenting. (Mind you at the time there just was no thing as pediatric behavioral health in western Louisiana.)

    Skip ahead another three years or so and land in western GA in a town with a population more than a bare dozen or so folks who aren’t militaty dependents. I mean, this town has a Target and mall and any kind of ethnic food you can shake a stick at. AND like four or five hospitals, some of which focus primarily on mental health. After four years at Ft. Polk, it was culture shock even knowing such a place existed!

    Within months Will was evaluated by a pediatric neuropsychologist who was astounded that all this time nobody thought to assess him for autism. Fetal Alcohol Syndrome seemed much more likely seeing as my claims that from pretty much conception the mere smell of alcohol and tobacco made me violently ill. (Obviously ass-covering lies. That’s what horrible parents likee do — lie and make excuses.)

    His diagnosis — at the age of NINE! — was an unbelievable relief. This thing is real. It has a name. It’s not my fault. And this town that actually has professionals have programs to treat this thing! On the other hand I was mad as hell. Four years and those backwoods redneck Louisiana idiots had no idea? Where did they go to med school? Ecquador?

    Six years later he’s had quite a battery of interventions and we are fairly confident he will function as a competent adult by the age of thirty, maybe. But I will always wonder which of these challenges could have been avoided in real interventions had started six or seven years earlier?

    So to sum up. Yes. Emphatically yes. Autism awareness is critical. Early intervention is so much the key. I do not wishy struggles on any other parent.

    /rant.

Leave A Response »


7 − = 2