Yet Another Letter to Smockity About the Library Girl

Dear Smockity:

I read about the dust-up regarding your encounter at the library with an autistic child. I also had a chance to read the original post on Google Cache. It hurt and I'm having a hard time not crying right now. I know that the post is several months old now and you're probably sick of hearing about it.

My almost-four year old son was just recently diagnosed with an autism spectrum disorder. You wouldn't know it to see him ... most of the time. Most of the time ... he is cute and charming; his sunny disposition causes old ladies to smile and the ovaries of young ladies to twitch. He's creative, bright, enthusiastic, full of wonder and in love with the world. This is who he is... most of the time. Then there are the bad days. Yesterday was one of them. I got the old "side-eye" from people as we walked along with him shrieking, thrashing and hitting both himself and me.

Believe me, I know that from the outside he looks like a spoiled brat. From the inside, I know that he is experiencing a terrifying runaway train of emotion that he can no longer control, in response to having his expectation of what will happen next derailed. I know this because I remember that feeling all too well.

I was diagnosed 31 years ago at the age of 11 with sensory processing disorder. If the child I was then was diagnosed now, I wouldn't be surprised if the diagnosis was ASD. I remember the feeling of drowning in a tidal wave of emotion. 80% of the ferocity of the tantrum was sheer terror at the overwhelming, unnameable feelings I had inside. Sometimes, I thought I was dying. While this was all happening inside me, my mother would often be spanking me, telling me what a bad child I was and how much I was embarrassing her. Once she asked God out loud what she had done to deserve a "retard kid".

When my husband and I were trying to conceive, I prayed, telling God that I would welcome and love any child He sent me. I was both overjoyed and terrified when I found out I was pregnant. What if my child was like me? Turns out that the child that God sent me to love is a lot like me.

When you see someone like me seemingly coddling a disruptive kid, know that I am not trying to reward bad behavior or cater to the whims of a spoiled brat. I am trying to help my child rein in that runaway train of terror. I am comforting him, reminding him to breathe. I'm trying to teach him survival skills.

I've tried "time outs" in his room - they terrify him and make the freak-out even worse. I'm ashamed to say that in several moment of exhaustion and being at my wits end, I've given him a swat on the hand or butt once or twice. That just seems to add confusion and a sense of betrayal to the terror he was feeling, and an overwhelming sense of shame and inadequacy for me.

I realize that you have gotten raked over the coals for your comments. I know that you were hoping that it was all behind you. I just wanted to (belatedly) give you a little more perspective about what it's like on the inside.

The Results Are (pretty much) In: The Big A

Autism. That's what the SFUSD special education department said. The speech pathologists didn't say that, but her report pretty much adds up to that conclusion. The people at MDAC didn't say that directly to me but the SFUSD people mentioned that they advised them to evaluate him for it. I'll get the offical MDAC report probably later this month

Autism.

I'm sad but not surprised. Though the kidlet is a bright, funny, social and affectionate kid, the worrisome signs were always there. As an infant, he didn't look at people when they called his name and often seemed lost in his own world. As a toddler he showed advanced language skills that suddenly flat-lined at around 16 - 18 months. He could not/would not follow through on simple instructions. A big vocabulary early on, but didn't speak in sentences until he was two & a half. He speaks in declarative sentences but can't describe emotions or physical sensations. He likes to play around other children but is not interested in engaging in direct play with them.

At this point in time, you would not know that he was autistic just by looking at him. He does not fit the stereotype. He is not a headbanger, a self injurer or a hand flapper. He can and does make eye contact. He is interested in other people and will ham it up if he knows that he has a receptive audience. He can be deceptive. He is imaginative and creative. He just seems to lack an understanding of the some of the fundamental but unspoken rules that govern language and human interaction.

What's ironic is that I already know this about persons with autism from working with adults and children with mental health issues. Very few people with autism fit the "Rainman" stereotype. There was the kid I worked with who was a comic genius - he very much wanted to interact with people and seemed to have uncanny sense of word play and timing. There was the young woman who was mostly non-verbal but was very interested in men and broke a few hearts in the halfway house. She was also an incredibly reliable bullshit detector who would start laughing at people when they were being deceitful, which I found very useful when I was conducting community group. Again, in their own way they were very much engaged in the social world around them but were lacking the cognitive and social skills the rest of us take for granted.

How this will all play out is still up in the air. I am hopeful that the kidlet will catch up and will eventually be able to blend in with the neurotypical kids.

And so it begins

Last Monday, I finally took Jack in for a Speech-Language assessment. The results were troubling, but not surprising. He definitely has some deficits - he can readily identify pictures on flash cards, but withdraws when asked questions. Can answer a question when given a choice between two objects in front of him, but cannot do so if the question is asked without any visual ques. She recommended enrollment in an early intervention class for kids with language delays.

I had been worried about Jack's language for about two years. He was an early talker and had been picking up steam until he was about 17 months old. Then, for about two months, our family was hit by bout after bout of cold and flu. After the viral onslaught subsided, my mother and I noticed that Jack's language development stalled. What had been steady climb toward sentence use plateaued.

Back in July of 2008 I posted a question to AskMetafilter. In the thread that ensued I said the following:

"I dropped off a bit in my logging of his vocabulary in the last few weeks, but at last count, it was about 100 words. This is why it something seems off - he's taking in enough language to be able to say about 100 words, but rarely speaks to communicate, preferring gesturing and vocalizations. It just doesn't add up.

He'd been saying words for about a year and was chugging along just fine, until earlier this year, after the whole family was sick with a never-ending merry-go-round of cold and flu for about 3 months. His language development seems to have plateaued since then. I didn't express my concerns to anyone until the pediatrician asked about his speech and behavior and brought up Autism back in April."

The advice that I was given was mixed with some people advising that my son sounded normal for his age and others advising that he be assessed. I delayed getting the assessment. Why? Because I was afraid that I was being a bit neurotic, pathologising a perfectly normal variation in language development. I thought that he might catch up and the language explosion would be forthcoming. It never manifested.

So what happens next? Wish I knew.