Autism: The Scarlet Letter

“Autism” is a word that I never thought would become part of my everyday vocabulary. But here I am, using it at least once a day. Bare minimum. I’m okay with that. I can say it. Autism! See?

The frustrations that come along with it are something else entirely, though. 

When Ethan was diagnosed a few weeks ago, the doctor we saw told me that it’s not just the child that receives the diagnosis; it’s the whole family. Oh, how right he was. Autism, whether we like to think so or not, carries with it a stigma. There are times lately when I feel like I’m wearing the Scarlet Letter on my chest – a big red “A” for all the world to see – only my “A” doesn’t stand for “Adultery.” It stands for “Autism.” Ethan’s behaviors are changing, as is typical of autistic characteristics. You see the most drastic changes before the age of five. Well, we’re sure seeing them now! He’s still very verbal, which is good. In fact, he’s more verbal now than ever...enough so that there are times when I find myself wishing he would be quiet, just for five precious minutes…although his speech pattern is very robotic and monotone in nature, he still mixes up his pronouns, and still very rarely makes appropriate responses to questions. One thing he has shown a lot of improvement on is making eye contact, which is absolutely wonderful! But we’re seeing a lot of “stimming” now, more than ever. That’s a term that’s short for self-stimulatory behavior; autistic people tend to stim to help themselves manage negative emotions, things like fear, anxiety, anger, and sadness, or sometimes to help themselves cope with overwhelming sensory input (too much noise, bright light, being too hot, etc.). Stimming can manifest itself as things like hand flapping, spinning, making repetitive noises or repeating certain words or phrases over and over…and over…and over…again. Relentlessly, sometimes. But don’t let yourself be fooled – stimming is a part of most people’s behavior patterns! Do you bite your nails? Wiggle your foot back and forth while sitting with your legs crossed? Pace the floor? Blink excessively? Maybe you have a nervous twitch? If you do these things or any other repetitive behaviors, you’ve stimmed, too!

The most notable differences in typical and autistic stimming, though, are the choice or medium of stimming, and how much of it there is. For whatever reason, an autistic kid spinning and flapping their hands is looked down upon, while nail biting (something  that, quite frankly, makes my skin crawl) is perfectly tolerated and acceptable. Now, Ethan is not a “hand-flapper,” and he’s not even really a “spinner” anymore. His number one stim right now is saying “Hi, Mommy!” at least 50 times a day. And if I don’t say “Hi, Ethan!” right back, he gets distressed and can move towards a meltdown quicker than you could say “Jack Robinson!” He also occasionally does things like making a repetitive clicking noise in the back of his throat, mimicking sounds like a door he hears snick shut, and the absolute worst is when he echoes his 10-month-old brother, whether it be cooing, crying, laughing, shrieking, you name it. Quite frankly, it drives me nuts! And no, I don’t feel guilty at all saying that – it’s perfectly normal for my child’s stims to drive me to my breaking point.

Now, I’m here to tell you something, people. I love my son with all my heart. I do. But Autism is a bitter, bitter pill to swallow. It has isolated us from everything and everyone we know and love. Never before have I been in a room full of people at a party, or in a crowded super market, or even in the living room relaxing with my own family, and felt so completely and utterly alone. Friends and family reach out to us (though a good number have simply abandoned us – it’s a cold, hard fact, but a fact, nonetheless), but the truth is that I always feel like I’m on the outside looking in now. I see friends posting on Facebook about how eager they are for their kids’ summer vacations to start, because they have all these plans and are looking forward to spending so much time with their children! They’re excited, literally counting down the days. I’m the exact opposite: I am positively dreading Ethan being out of school for the summer. I know he won’t handle the transition well (we’re lucky that he absolutely adores school), and, to put it bluntly, I know I’m going to go completely bonkers with him here every day, all day, no breaks, and no help. However, there is a possibility that I’ll be going back to work sometime soon, so if that happens, there will be day care…if we can find a place that will take him. A place that is equipped to handle kids with special needs. The last day care experience we had was anything but good, so I’m already experiencing a lot of anxiety about this.

There are some people in our lives who, believe it or not, refuse to even say the word “Autism” or “Autistic.” They either feel like they’re insulting Ethan, insulting us, or they grew up in a generation where the word “Autistic” may as well have been synonymous with “Retarded,” so they’re ashamed of it. 

Well, as isolated and lonely as I may feel now, I’m not ashamed. I will never be ashamed of Ethan, because Autism just means different…not less. He is just as smart, just as loveable, just as funny, and just as amazing as anyone else’s child. But he’s my child, he is fearfully and wonderfully made, he is beautiful, and regardless of how alone I may sometimes feel, I will wear my Scarlet Letter proudly!  

The Game Changer

I can’t think of a good way to start this post off, so I’m going to be honest and start it off the way it played out in my head. I’ll go ahead and briefly apologize for my lack of entries the last few weeks, but my dad was in the hospital for a very long time; it involved a lot of back-and-forth on my part and disruption of our family schedule, which Ethan – well, okay, none of us tolerated it well. But my dad is home now and getting better, so I’ll be doing my best at regular postings from now on. So, down to business with an update.

Let me start off by saying that about three and a half weeks ago, we experienced a Game Changer.

What I mean by this is that three and a half weeks ago, we had Ethan’s psychological evaluation at the Regional Center. This was the big one, to see if he qualified for ABA (behavioral intervention). Normally with a diagnosis of PDD-NOS or even Aspergers, kids are not considered “autistic enough” to qualify for treatment. This, however, was not the case with us.

The interview was quick, maybe 30-45 minutes. Ethan did not engage in any imaginative play. He was able to put together puzzles very quickly. He held onto a green plastic ring from a baby ring stacker that he had found in the doctor’s toy box for the entire interview. He repeatedly came to me and said “Hi, Mommy!” seeking reassurance. He made some eye contact with the doctor, but did not acknowledge him as a stranger or display any kind of nervousness around him. He had trouble transitioning from activity to activity, although there has been tremendous improvement with this since he started school a few months ago.

The doctor fired questions at me left and right, not giving me much time to think about them, which I think was good –it probably would have given me a way to “get out of” answering truthfully. At the end of the interview, the doctor sat back and watched Ethan intently for a bit. He then looked at me and said that he thought Ethan was a very nice boy and that I was very poised and handle him very well, for which I thanked him. Then he asked me “The Question.”

“So, Mom, what do you think?”

“I think he’s autistic.”

“I do, too. I’m recommending full services.”

And there it was. That word, the "A" word. This is what we’ve wanted and needed since we started this process almost a year ago: a diagnosis. So why am I still so sad? 

Because now, my child is not just on the Spectrum.

Now he’s autistic.

But I still love him with every fiber of my being, and I will still fight with – and for - him, every minute, every hour, every day, until my last dying breath. He is still my little boy, my everything. And I will always be his mother. Many things in life are Game Changers, but Autism will never change that.