Beware the Intellect Behind the Shell!

I am reading a new book that looks at autism from a spiritual point of view. Faith is very important in my family, but I am always guarded when I read faith-based books. There is a lot of bad, damaging stuff out there and I guard what I put into my mind. This book so far has had some good points worth sharing and if worthy I will recommend the entire read once I am finished. With the first three chapters under my belt, I like the author’s viewpoint so far. He touched on the importance of understanding, or more importantly, believing in your auttie’s intellectual capabilities – regardless of what appears on the outside (or shell). I like the argument the author makes in our society’s ability to assess the intellectual capabilities of those with autism being limited due to the current efficacy in existing standardized testing for I.Q. With our current limitations of testing specifically the autistic, it is difficult to discern truly what level of thought capacity people with autism are capable of. He makes many points to help destroy stereotypes of the non-verbal, apparently non-communicative autist by those, sadly, even within the autism research field that autists are more than likely just a bunch of mentally-retarded humans who have little to no potential of productive thought. Those of us who take the developmentally positive route know this couldn’t be further from the truth. Autism is such a disorder of depth. The author even challenges my willingness to even call it a “disorder”, just as much as what one would consider “normal.” What is normal anyway? The author stresses that in the absence of more qualitative and longitudinal testing of the intellectual capabilities of those living with autism, we should all just assume that all people with autism have been Providentially-endowed with vast intellectual capability that deserves nurturing. I agree.

Let’s look at the context of when we parents discuss the negative or frustrating issues surrounding our kid’s autism right in front of them as if they aren’t even there! Just as we wouldn’t readily discuss certain issues of behavior or development in front of our typical-developing children (of course not, they can communicate and understand all the bad things we’re saying and we wouldn’t want to lower their self-esteem consciously!), then why would it be any different in discussing personal autism related issues right in front of our child with autism? Just because he or she does not speak, or it appears that they are non-communicative or they don’t demonstrate emotions the same way we do doesn’t mean that inside of that shell is a competent, understanding and feeling person who hears the praise or sting of each one of your words. As you discuss with your spouse, or others about the frustrations you are having with your child’s development right in front of him you need to remember that there is a great chance that his intellectual capabilities are allowing him to understand everything you are saying about him. The author contends that many caregivers, parents and professionals will discuss such matters in front of the individual with autism as if they are not even there. It is as if to say, “they are mentally retarded anyway, so they aren’t going to understand this negative discussion I’m having right in front of them.” But then, we learn about the endless cases where the auttie eventually learned to communicate with traditional methods and shares with us how those words use to hurt so much to hear! My wife and I have often discussed the importance of discussing the negative types of matters in private, away from the ears of our boys as we do not want to learn later that our boys were harmed by such discussions. Even when discussing things on the phone, always be mindful if your auttie is within earshot (as she may understand more than we give credit for). Err on the side that they understand completely and you’ll be sure to keep the critical out of earshot, and the praise and loving phrases right in front of them! When the author, who is a consultant on autism development and works hard to establish a deep connection with his autistic clients, shared the following my heart just sank for all the times I was critical or negative in front of my boys about the challenges their autism brings in our home:

“In fact, the two phrases most frequently communicated to me upon first connecting with others with autism are, “I love you,” and “I’m not retarded.”

I can vividly imagine my non-verbal son sitting on the couch watching one of his videos and me thinking that he isn’t paying attention to the phone conversation I am having about him not even 10 feet away about why he isn’t progressing in his verbal abilities. And that perhaps we need to look at another provider to work with him and verbalizing perhaps unreasonable expectations of timelines of when he ‘better start talking.’ Although he doesn’t react to the emotional pain he is having because he can’s, and although he doesn’t make eye contact with me…because he can’t – I can almost hear what his words (if he were more verbal) could say inside of his shell to himself. They may go something like this:

“I am trying as hard as I can Daddy. I know the right words to say, I can visualize them in my mind and say them on the inside, but I just can’t say them with my mouth. I want badly to talk, all the time, but my brain won’t let me yet. Oh, if only I could tell you right now Daddy that my teachers are helping me and I feel I am getting closer that you wouldn’t say those sad things about me. I want to be able to tell you and show you and Mommy how much I love you, but I can’t! It makes me feel so sad for you to think that I am not growing just because I am not talking on the outside like my brother or my friends at school. Please don’t give up on me. If I don’t talk will you still love me anyway? I want to be just like all the other kids, but I can’t talk the way they can. Please don’t quit on me daddy. Please love me.”

I don’t want to be the one to learn that for years I brought sadness and pain to my auttie by the words that I spoke that I thought he didn’t understand. I prefer to err on the side of them understanding every word I say. That way when I fill him with praises of how much I love him, how proud of him I am just the way he is, how I believe in him, and remind them often how much God loves them, I believe those kinds of words will encourage and foster positive development of them as a whole person – regardless if verbal ability is part of his future or not.

God, grant me the serenity
to accept the things I cannot change;
the courage to change the things I can;
and the wisdom to know the difference.

-The Serenity Prayer

In Parenting,