The Downside of Words

This post has been swimming around in my brain for awhile, but other, more pressing posts have taken priority. It's been festering in there, though, and today is the perfect day to just go ahead and get it out there.

Anderson has autism.  Anderson has words.

If you're an autism parent and you're reading this, that means nothing to you. You probably know, and have read over and over and over, that no two children with autism are alike. You can never, ever compare kids on the spectrum because they're snowflakes--they're all totally different. Yes, there are common characteristics for sure--and those common characteristics are how children get their diagnoses--but which characteristics a child has, and how they physically manifest...there are countless, countless ways.

I think it's fair to say that the general public probably hasn't attained this level of knowledge, though.  There are some--teachers, special education especially, early childhood specialists, medical professionals, people in the psychology field, etc.--who are well-versed on autism. But the general public often doesn't know about the daily ins-and-outs of autism. Let me be clear--I am NOT saying that this is bad. It's not bad, and if you fall into this category, consider yourself blessed because you probably don't have a family member with this diagnosis and therefore haven't had a need to bury yourself in research. All it means is that some people know less about the topic than others--just like everything else in the world.

One of the characteristics of autism--one that is on the DSM-V--is a delay in language development.  That's a broad term because there are many, many types of language delays. There is the actual delay in developing the ability to communicate with words, and then there are delays with developing the ability to communicate in a more "typical" way--using correct syntax, understanding the back-and-forth nature of conversation, speaking for a purpose, etc.  The first is much more easy to recognize; it's noticeable when someone lacks the ability to speak. The second is a bit more complex.

The second is also where Anderson's language issues lie.

Anderson has words. Anderson has lots and lots and lots of words.  When, after months of DI and Speech Therapy, he finally started talking, I was overjoyed. In fact, I recall relief washing over me--if he's talking, surely he doesn't have autism!  That was my thought, if I'm being honest. The number of words he knew continued to expand exponentially, and yet there was something still nagging at me. There was something still..."off"...with his communication.  Of course, fast-forward about a year and a half and we are sitting with an ASD diagnosis, and Anderson still struggling with communication.

Please, don't misunderstand me. I am THRILLED that he has words. He can communicate his basic wants and needs to us, albeit in a different language than typical kids. I am happy, and thankful that the many, MANY months of therapy paid off and that he can use his voice to communicate with us. This is success for us, and we're grateful.

However, when it comes to others...I'm just going to be honest here. Because if you can't be honest on your blog, where CAN you be honest?  Often, when people hear him speak for the first time, they're shocked.  They expect something...different.  They look at me, with an expression of surprise in their eyes.  Sometimes, people might even comment and say something like, "Oh, he's 'high-functioning' then", because he can speak. Because he can answer simple questions. I'm fairly certain some people even question the diagnosis, when they hear him speak and see him follow some simple verbal directions.  Especially because he's technically advanced when it comes to articulation. He speaks very clearly and is easy to understand. To some people, he seems "typical".

He's not. He has words, and he uses his words to let us know of his struggles. Struggles with obsessing/fixating on things. Struggles with breaks in routine. Struggles with understanding social norms. He uses lots of echolalia to get his points across. He struggles with syntax, and pronouns, and understanding the reciprocal nature of talking to someone (and that's an understatement!!). And when he has a melt-down, he loses his words completely. And it becomes a guessing-game to try to figure out what the hell is wrong. Sometimes it's obvious, if you've been watching and have seen whatever triggered the episode. Other times, it's impossible to figure out, and we are just left to wait it out. To see if he was hurt somehow (bruises, scratches, etc.), or to see if he was just struggling with something else, some toy that doesn't behave how he wants it to behave, or if he's feeling sick, or something else. Those times, it's pretty obvious that he has autism.

So please...friends. People in the community. Don't doubt his diagnosis because you hear him talk. Because you see him follow directions. I assure you, he is on the ASD spectrum.  The psychologists who tested him extensively...the many observations of him in his classroom, the many parent-completed questionnaires, and teacher-completed questionnaires...they aren't wrong.  They don't dole out this diagnosis lightly. He has words. He has autism. The two can happen simultaneously. Trust me.

Leaving you with a video of a somewhat typical conversation with Anderson...some of it might make sense, some doesn't. That's most of our interactions with him.