Autism Recovery: Thinking Outside of “the Window”

RavenI’m kind of a communication nerd. I love to watch and listen to people, decipher their intent based on word choice, style of communication, body language etc. You can tell a lot about a person by what they don’t say or by the questions they ask. It’s ironic (or perhaps telling) that my own child has communication challenges. For years he’s spoken in what are called “scripts” – lines from movies and books. For years he never asked a meaningful question. Not one. Questions are essential in my mind because that is how you learn about yourself and your world. That’s how you identify and connect with other people.  It’s not to say that he didn’t have questions – he just never communicated them.

Scripters are an interesting subset in the world of autism. If anyone is able to crack the code for eliminating scripting, they will make millions. Those of us with children who script are painfully aware that there are many parents out there just dying to hear one word from their kid. We don’t often complain about the incessant talking because we know we are lucky to have language. But being verbal does not mean you can communicate. My son is hyper-verbal (my term) but struggles with functional back-and-forth communication. I’m pretty sure non-stop scripting is actually outlawed as torture by the Geneva Convention on the basis of being too inhumane and cruel.

Scripting

Many professionals along the way assured us that the scripting was a strength and that it would eventually lead to real communication. That didn’t happen. What did happen is the scripting became the “stim” – the activity used to entertain oneself, the activity used to calm down, the activity used to navigate the world, the activity used to avoid having to communicate or deal with anyone else.

Sometimes the scripting is relevant to a situation. Sometimes it is not. I remember when my son was very young he said to me “You do not like green eggs and ham!!!!” rather than a simple “no.” Another time he was very upset in the car and we were on a trip to visit family. This was a two-hour drive, and for most of it he was screaming. Finally he said “All we could do was to sit, sit, sit, sit, and we did not like it not one little bit!” This statement was completely relevant to the circumstance; understood only by someone fluent in Dr. Seuss.

My son is 11 now, and we’ve been working diligently the last couple of years on training and rehabilitating his neurology so that it works more functionally and more effectively through an innovative program called FOCUS. Because of this work and some other novel treatments, we are now hearing more spontaneous language.  Last year we started hearing questions from Spencer. These were not deep questions – rather they were simple ones such as “Where is . . . ?” or “What’s wrong?” or “Is it going to . . . ?” His world was opening up.

This week I have heard repeatedly the Holy Grail of questions from him: “Why?”

He’s 11 years of age, and he just asked his first real why question.  He asked it so often one day that I finally had to answer, “Because I said so.” I felt like I had won the lottery. I’m not sure I can impart how amazing this is. This is huge. Like the-dam-has-broken-and things-are-never-going-to-be-the-same sort of huge. Every. Single. Thing we have tried in the last 7 years has been totally worth it to hear that question. Every hard choice about diet, about what treatment to include and which one to exclude because there wasn’t enough money for both, every late night hour of research, every conversation I’ve ever had with other parents seeking health and recovery for their children, every sacrifice we’ve made in favor of what is best for my son, all of it – completely worth it.

So let’s be clear about the point of this post: THERE IS NO WINDOW. Kids recover and improve at any age. You may have to work longer and harder at it, but it is possible, and never let anyone tell you differently. NEVER give up. Always believe and never give up.

~ Raven

 

This entry was posted in Blogs by Thinking Moms' Revolution and tagged , , , , , , . Bookmark the permalink.

11 Responses to Autism Recovery: Thinking Outside of “the Window”

  1. Deborah says:

    Same story with my son and now he is a chatterbox with appropriate language, it was worth everything we went through to get him to this place, another help was ten to twelve hours of sleep and protein every three hours.

  2. Pammypies says:

    I felt as if you were telling the story of my life with my son and his difficulty to communicate! At 2.5, his therapists and teachers told us he will speak but for years we heard the scripting thing. However, it was ALWAYS appropriately used. Our son is now 13 and asking questions just as your son is and we could not be happier!

    Thanks for sharing. It helps to hear this from other parents.

    • Raven says:

      Yay for questions! <3

      • Pammypies says:

        His first question was, “Where did daddy went?” This knocked me out of my shoes! I had to collect myself and tell him the correct way of asking this question. He still has problems with verb tenses and pronouns but it’s coming…

  3. I sooo related to this post. My son has yet to ask why questions but his speech is coming along, more spontaneous language and communication.

    I have been looking for nuero programs so thanks for that.

    So happy for your son and family. Can’t wait to hear the updates on the conversations you have!

    Ana <3

  4. boxergirl8 says:

    Raven, how wonderful for you! I can totally relate to the scripting! My son also uses various lines from movies and tv shows to communicate. Example, when his blood draw was finally over after having to hold him down for its entirety, he shouted to the nurse “thank you for putting that together!” (Miffy) and at school he has been known to say “this is not fun” (Thomas). While others have no idea, i agree with you and clearly it’s his own method of communication! So happy for your son!

    • Raven says:

      LOL – the scripting is often what keeps us laughing around here because it can be incredibly funny. There’s nothing like a well-placed one liner in public to shake things up a bit. When my son was about 6, one of his favorite lines at the time was “I’d like to take a moment to talk to you about osteoporosis”.

      • Pammypies says:

        “I’d like to take a moment…” WAAAAAAAY too funny! I LOVE it!

      • momofsomes says:

        Oh my goodness, that is freaking hilarious! My 17-year-old spoke SpongeBob-ese for the first 9-10 years of life. Well, that’s not entirely true. Sometimes Ed Ed and Eddie or Ren and Stimpy made an appearance, too. ;) It was occasionally relevant to conversations and contextually appropriate and sometimes not. She grew out of this entirely and is a wonderful conversationalist. My DD has a part-time job (she’s still in HS) and recently her boss was criticizing her for being slow at scooping ice-cream but told her she is wonderful with the customers. She was once a hyperactive nut who did nothing slowly and hadn’t the foggiest clue how to communicate with others, so the irony is rich, lol.

        My 5-year-old son hates television but scripts lines from books, which I’ll take in a minute over SpongeBob. LOL, I have PTSD from that damn show.

      • pammy says:

        My son does a mean Larry the Cucumber from VeggieTales. One time he was injured from a child at school who threw something at him and it cut his head. That evening after we got home from the hospital, I was so upset that I couldn’t eat dinner. Neither could my husband and daughter. My son came up to me and said in his Larry voice, “Don’t worry mom, we’ll fix the elevator last. ” This is how I knew he was okay. We are going to put him in therapy for stimming and OCD. I have the feeling I will miss his “voices”.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>