Speaking his own ideas, his own mind: Language, autism, and discussions of death


Image by DJMcCrady via Flickr

My son’s language acquisition has been very slow and abnormal (or normal for an autistic child). Though he has remarkably and impressively improved over the past two years (and the last year in particular), his sentences continue to be rehashes of previously heard sentence structures and phrases. In a beautiful and noteworthy advancement, he now regularly uses those pre-learnt structures in attempts to express his own ideas; but it doesn’t come easy:

You can literally watch him struggling to piece together what he wants to say using turns of phrase that he has already encountered. He looks to the side and his eyebrows bunch together and his words trip over each other repeatedly while he tries to pull it together. I’ve learnt to sit very still and make my body language convey patience and interest while he does this; if I try to help him along or show distraction, he tends to lose his train of thought.

Eventually he spews forth a long garbled sentence and looks at me hopefully; I’ll then try to figure out what he’s trying to say and help him tidy it up. That process goes back and forth between us until we reach an understanding. An unfortunate outcome of this effort at communication is the inevitable corruption of his original idea; because as I try to repeat back to him what I thought he was trying to say, I literally see him working my replies into his understanding. His emotions are laid bare on his face; I’ve had to learn to recognise slight nuances so I can often see when he’s trying to work it out and when he’s simply co-opted what I’ve said.

So many times I’ve wanted to hear his thoughts pure, untouched and un-reworded by my efforts to understand. A current topic he talks and muses about a lot, is time, and more specifically, death. Its discussion is a natural outcome of his current fascination (obsession) with all things time related, which started with a love of clocks, then a love of days of the week, then months of the year, and of course the length of a life. We’ve had to come up with answers to his questions that he can understand given his current level of language comprehension. If we aim the ideas too high and abstract, he gets confused and will keep pushing us to supply an answer he can understand, so we end up simplifying complicated truths to fit his current schema and language (as indeed you would for any child, but there are differences which I’ll discuss shortly). The alternative to his confusion and insistence for clarity, is he’ll just lose interest altogether in the subject and the enquiry, which I don’t want.

The answers I supply my son are not the same as I would supply to another child. I might have to simplify the ideas for any child, but I leave in the uncertainties and unknowns and the child would be OK with a bit of fuzzy edges and maybes. But my son needs absolutes, clear-cut principles that universally apply, with few if any maybes; unfortunately, the world is rarely if ever like that. I do my best though, and so it is that my son needed an age at which everyone is dead; we chose 120. He needed a precise age at which he will be a man (18 works), and wants an age at which he will stop growing (I think we chose 20 for that). When he originally started discussing death, and began to understand it as a sort of forever-sleep, he tried to tell / ask me that after someone dies they (in his words) “start again.”

This morning he was singing the song “My Grandfather’s Clock“, about a man who dies at the same time as his clock stops. He was having trouble separating correlation from causation; we had to explain the clock stopping didn’t cause the man’s death. He thought about this, then said that only men die, not boys; and tried to conclude that this meant if he didn’t become a man he wouldn’t die. I (sadly) corrected him that some boys do die, such as when they get hurt very badly. He thought about that for a while and tried to ask me whether slamming his finger in the sliding door would mean he died. I told him no, it would have to be worse than that. Again, his eyes to the side, his eyebrows bunched, as he processes that and formulates the next response / question.

It makes for an interesting reflection on the importance of words to the ideas we form and share. With language, he proposes these ideas to me and requests my feedback for agreement or approval. The way his idea is formulated is already limited by his known words and phrases, immensely more-so because of the challenges autism provides for his communication. Then my replies (my words) shape (and probably distort) his original understanding. Words shape and changes ideas that affect the way we interact with and comprehend our world.

Communication makes it easier to both measure and access someone’s intelligence, and for that intelligence to be shared in ways that can change the world (this makes it easy to understand why autistic people’s intelligence is so often dismissed and missed). There is an extra dimension though to communication when it can be spoken: It is raw, there is no delete button, no visual spelling or grammar that can completely confuse or change the message. It is immediate and intimate. The conversations I have with my son would be different ones if they had to be written down or represented in pictures. There would be that extra layer – the computer or other technology – forming one more barrier through which his meaning must be sieved before I can access it. So I am glad he talks, and not just communicates with pictures or the written word. I want him to use all forms of communication – art, writing etc – but in addition to and not instead of the spoken word.

I look forward to the day that the only limit on the immediate uncensored sharing of his ideas with me, is his existing vocabulary, and not bound by pre-learnt sentence structures clumsily adapted to his needs. I accept too that this might never happen, but I have learnt not to let that acceptance ever get in the way of him. He keeps breaking free of his seeming limitations and surpassing expectations.

He has his own ideas, his own mind, and I will never take for granted that he has found a way to speak it.

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8 Responses to Speaking his own ideas, his own mind: Language, autism, and discussions of death

  1. nostromo says:

    Really enjoyed this insight to your sons mind. I look forward to the day I hear my sons voice again too.

  2. http://momnos.blogspot.com/2006/03/dr-strangetalk-or-how-i-learned-to.html

    Please visit the above post. Both of your posts, together, are profoundly descriptive of the differences of language. Autism IS a language difference. NO ONE can explain it like a mother. It’s amazing how we come to understanding. Bless your heart for being so keyed in to your son. Love is an amazing thing, isn’t it?

    Thank you for taking the time and depth to create this post. Somebody should create a book with the sole subject being langauage aquisition. Some of us are better at understanding our kids than others, and it would be profound to get it out there all in one place.

    • Thank you for those kind words usethebrain. And a extra special thank you for the link to that truly very helpful, informative, hopeful, and beautiful post. From there I clicked through to another amazing post they wrote which has also helped me understand my son’s behaviour much better – especially his past behaviour during the time that I was his primary and everyday therapist (pre starting school): http://momnos.blogspot.com/2005/11/extreme-dysregulation.html

      That is one wonderful blog. I’m looking forward to tawling through it for more insights.

  3. mamafog says:

    I also enjoyed the insight into your son’s thoughts and words, and the thought you put into your own responses to him. He is lucky to have a mother that understands him so well.

  4. Tsara says:

    What a beautiful visual! My brother’s speech is still unclear enough to be understood only by family (for the most part) and only sometimes. At thirty years old we still watch him try and try and try finally giving up and asking for juice and music, words that he is able to say pretty clearly. Luckily, he REALLY loves juice and music! The struggle is one that he hasn’t given up on, I think, because he truly believes he can talk.

    I love how you put it. “I accept too that this might never happen, but I have learnt not to let that acceptance ever get in the way of him.” To accept helps you not feel like a failure if things don’t progress or progress real slowly. And to not let that get in the way of him helps the believing and asking for more. He is a lucky, adorable little boy!

    Communicating with my autistic brothers really made me see how important it is to never assume you know what someone means when they share their thoughts with you or that they know what you mean just because you told them!

  5. Marian says:

    I very much relate to this scenario and the sentiments expressed. This is a very accurate description of my own experience with my son. I am here reading this because despite his “disabilty” he seems to know and to have processed much more than he can say in words. He loves to borrow an expression or saying which conveys something of his needs or feelings. This is helpful but I too will always press him to find his own words and hope this helps unlock his full potential..

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