Me and my kiddo

Me and my kiddo

Thursday, March 4, 2010

Autism Experience

Two year old kid.  Side by side play.  Extreme adherence to routine.  Normal.  The concern really peaked when my son was exactly the same at three.  Those interactive skills which are usually exploding as children grow, were simply not there.

He would not look children in they eye or speak to them; he clearly saw them as completely different beings from adults.  Even adults were not seen as people with feelings, they were concretes as well.  For example, walking into his preschool classroom, I could greet a typical peer, "Hi Polly."  The response was usually a smile, eye contact, and often something to engage like, "Hello.  I had a birthday party yesterday and got lots of presents.  Isn't that great?!?"  Now, it's very normal for some kids to be more or less shy.  However, my son would never interact this way, not even with comfortable adults.  He would describe things in factual terms or seek sensory input, but not engagement.  For example, his response to any greeting  was occasionally a glance, but often nothing.  He wouldn't bring a toy for evaluation, but if you asked him about it, he would tell you about it being white and made out of metal and having wheels and... the concrete description could go on and on.  While it takes a long time for children to smoothly think about what another person is feeling, they usually have a keen grasp on reading emotional responses i.e. they know that a person is sad and can feel the response *.

Two year olds love their routines, but he wasn't gaining more perspective with time / experience.  He saw routines as the essence of his world.  For example, I needed to park my car outside the garage.  For one week, I dealt with a solid thirty minutes of ballistic crying every time I came home because the car belonged in the garage.  It was in the nature of his universe.  It was as frightening and upsetting to him as it would be for us to wake up to a purple and green polka-dot sky.  Cars in the garage were part of the metaphysically given and that's one example of hundreds.

His language was a grab bag of scripts that meant a concrete whole to him.  He would say, "You want to give me the milk" in the same way another kid would say "milk".  He didn't understand the pieces of language and took several years beyond his peers to get pronouns right (another big social issue if you approach peers and start telling them "You want water, toys, etc.").  He maintained a concrete understanding of the world.  He would spend hours watching how the wheels of a toy car rolled, but did not pretend until, again, several years beyond typical peers.  The idea of imagining that the car was on a road when it was on a table made no sense at all to him.  If  you made vroom vroom sounds and rolled it around, he'd look at you like you were crazy.

Finally, there were huge sensory seeking issues.  He would fling his body into people, need brushing therapy to get enough skin stimulation, have loud, shrieking verbalizations (auditory self stimulating), all sorts of behaviors that made people wary of getting close.  This situation was heartbreaking.  So, what changed?

Readers of my blog know this is not the child I deal with now.  There are plenty of six year old, autistic children with the exact same issues that my son was showing at age three.   Special needs preschool, speech therapy, and occupational therapy all helped, but there was a fundamental change that significantly altered his course.  He developed hyperlexia.  Part of his scripted language had been the ability to memorize forty page books which he would recite to himself in bed each evening.  He showed an early affinity for letters and reading.  He was reading basic books before age three and is currently reading chapter books at third grade level (he's in kindergarden).  This was the key for turning his world around.  

He took the experiences from the books, the hundreds of books, and made them his own.  He learned about people, feelings, imagination, language.  He filled in the huge gap in language that was below his extensively scripted communications and learned how to use pronouns correctly (after all, that was the way it was done in the books).  He learned how people can feel different things when interacting and how he could observe expressions, body language, and tone of voice to understand.  He gradually incorporated pretend play.  First, it was just repeating a book.  Then, he would put together two scenes from different books.  Slowly, he started adding his own ideas to the pretend.  Now, he has thousands of pretend, invisible students in his room that he teaches each evening.  Now, I can write a social story that goes through what will happen in a new routine and he can read it, over and over.  Now, we can read books about personal space and he reads them on his own too.  I brought home one for 12 year olds that was done in comic book format and he sat down and read the 40 page book to himself, commenting to me on each page.

My son is still an incredibly sensory seeking kid.  We find lots of outlets for that exuberant energy.  He still has greater difficulty than typical with emotional storms, but it's been awhile since I dealt with a full melt down tantrum.  (The How to Talk book helped the most with me facilitating his growth there.)  He learns from the books and he practices.  He can use words, and the right words too, to express his feelings in a controlled, non-attacking manner.  He is highly cognitive and wants to discuss every idea, situation extensively.  We read and read and read some more.  He now spends at least an hour reading to himself in bed each night and comes down with more to discuss each day.  So, he doesn't usually say "hi" to people or understand perspective and he often gets too loud/close, but he is intelligent, affectionate, energetic, and, most dear to my heart, passionate about learning!  I have no doubt that, if he still wants it, he'll become the airplane engineer that he desires.

Reading to me when he was about three and half.  (He's always been a big kid.)

* Fascinating research on mirror neurons indicates autistic children don't experience what another person is experiencing the same way that a typical person does. This is one of the key ways that people learn in childhood and interact with others as they mature.  (I read the book of one of the key researchers, but here are some quick articles:

and a basic review of Autism Spectrum, 
the key is really that the diagnosis is so broad, it doesn't tell you much except that there are some social difficulties.  When I first heard the word applied to my son, I thought the doctors were crazy because, in my mind, autistic kids sat in the corner, rocking back and forth, not talking to you, completely secluded in their own world.  

This is one of the best overviews I've seen in a quick video.
Temple Grandin is famous for her work in sharing the unique experiences and the difficult process of learning to interact socially which is characteristic of autism.


  1. Thank you for this. I enjoyed learning more about autism from you. I would love to read more from you on this topic. I have taught gymnastics to a few autistic kids, but I don't know much about how it works. Keep it coming!

  2. Rachel, thank you. Much of what you have said about your son applied, in lesser degree, to my grandson. Your account makes some aspects of his situation clearer.

    Unstated in your account is a point that deserves credit: To have achieved what you have achieved -- in effect, saving your son's life -- required an enormous investment of time and focus. I suspect it has been quite a learning experience for you personally too.

    A salute to you!

  3. Kelly: It's a tricky topic to generalize because the spectrum is so broad. I highly recommend that quick video I mention for a good overview. Many of my posts have focused on what particularly works well with a highly cognitive kid that reads. Social stories, written contracts, idiom dictionaries, and literally dozens of techniques that have been so valuable to me in nurturing my son, wouldn't work for a kid who had verbal / written processing issues. Those techniques would cause more stress or need to be significantly modified. I'll certainly keep sharing what has worked for me though and I'm open to suggestions of other autism posts that would be useful.

    Burgess: Thank you for the warm words. It is true that I have spent thousands of hours learning and developing tools that have helped my son grow. When I saw that my end goal of parenting a child to independent adulthood was achievable, it just became a steeper hill to my goal (and I can handle steep).

  4. Great post, very informative! I'm glad he's doing so well, and can't imagine how stressful that must have been for you and your husband.

    I know what you mean about it being difficult to write something like that, I think. When I write about the time Ryan was in the hospital after the Big Peanut Kaboom and the first months of living with the allergy, it's like I'm back there, and I remember vividly how scared and worried we were.

    I find it so interesting, too, that you use the same discipline and teaching tools that I do. We each adapt them to our own children's particular needs and our situation, of course, but I've learned so many great ideas from your parenting writing. It helps, too, that Ryan and Cameron seem to have similar personalities--maybe that's it? :o)

    There's more I'd like to say about this, but my time is short just now. Well done! Your son is off to a wonderful start in his life!

  5. Thanks for the link to the video. I'd never heard of Temple Grandin but I loved her story - it was so heroic! I have to find that movie now.

    I have a question for you. If ASD is so broad a diagnosis, is it helpful? How much did you learn from autism experts and therapists and how much did you have to figure out on your own? It sounds like you've done so much independent work, and maybe that is exactly the key--that each child needs that intense, individual attention to his specific situation. Of course, that would be good for everyone, but more necessary for those who are autistic. It seems like that was a theme of Temple Grandin's talk too.

    I join the others in saying to you: well done! And also, thank you for sharing.

  6. Rachel,

    I'm so glad your son is progressing and your sensitivity, care, and efforts are paying off.

    Several of the members of my FORUM have autistic children or siblings and I will link to this post to give them inspiration and encouragement.


  7. With her permission, I'm posting this question and my response:

    Grace Chen wrote:

    HI Rachel,

    Thanks for sharing your blog, I read your March's post on autism experience, haven't got a chance to read the rest of the posts yet, but I have to say my son shares so much similar experience as yours, he just turned 4.

    I feel so encouraged that the hyperlexia experience actually will help our kids' social and sensory issues, I actually started seeing some emerging signs of that, but I wasn't sure whether he learned it from the books or at school.

    I am curios to ask: does your son go to a public Kinder-garden or a private one? With all that reading, does he feel bored at Kinder-garden? is that an issue we should worry about? We are at the juncture to look for a good Kinder-garden for Brandon to start, and we decided to hold him back for one more year to kinder-garden, is that what you did too?

    Thanks again

    Hi Grace,

    I hope you enjoy the reading :) I've only been at it two months, but most of my tools are designed to be especially effective for use with hyperlexia and I've already shared some of my favorites.

    Yes, my son goes to a public Kindergarden with special needs support during recess. He started in a special needs preschool mixed with typical peers and his current classroom is "main stream". It was an extremely bumpy start to the year. He didn't have any routines and was angry that people were telling him what to do. (I'd already written an extensive social story and he had visited the kindergarden classroom weekly for the last few months of the previous year, but that wasn't enough to make a smooth transition.) We established a separate desk for him where he could go if activities were too easy or too hard. Gradually, he participated and became more comfortable, less angry.

    There are still things that bore him at kindergarden, but he has choices and he usually choses to participate. He has been working through the school's accelerated reader program and there are multiple ways to make sure the challenges are there. My son's birthday is in October, so he started the year as a 5yo and is now 6. We could have pushed him to be earlier, but that would have been a poor social choice for him. Currently, he is gaining vast socialization experiences from kindergarden and enjoying the practice in fine motor and number concepts. The academics aren't particularly challenging for him, but he spends his thinking capital on understanding social situations. I do think the academics and the social situation will eventually become more of an issue, but Kindergarden used to be all about socializing and that's a skill that I think he's gaining now beautifully.

    Warm regards,


  8. Jenn- Yes, I certainly think some of the tools for dealing with toasty, sparking, ready-to explode child-energy are useful for both of us! :)

    Amy- I don't find ASD a significantly useful diagnosis outside of legal status / medical services. In research, I find my time is much better spent focussing on hyperlexia and I find those parenting lists offer the most useful recommendations in this area. Even within the hyperlexia population though individuals vary greatly. Ultimately, I think it comes back to extensive trial and error with each child. I've gained wonderful ideas from friends, fellow bloggers, multiple diagnosis and parenting specific lists, and dozens of books. You're right, I think parenting involves combining those resources that work for your child and what works is based on their delightful individuality.

    Betsy- Thank you. I'm glad to be share my passion for this journey and how joyful it can be, even when a kid's path up is a bit steeper.

  9. Some moving successes here. Wow. I used to care for a child with severe autism when I was in middle school: some of the same symptoms you describe with regard to social interaction but much more severe, and he did not use language *at all*. It was very difficult. I wish I had known more at the time to be able to help him.

  10. Very interesting post. The more I find out more about Autism, the more it raises serious epistemological questions for me. I'll be sure to let you know when I end up writing on it.


  11. You have captured this SO well!!! I see why it was so hard to write.... -SVZ

  12. Monica- The framework is so helpful for understanding. Approaching a non-verbal kid by interacting within their values, understanding the perception / sensory challenges involved, makes it so much easier to literally get through.

    Jason- Thanks!

    SVZ- I usually smile or just contemplate with memories, but this one definitely brought back more of the pain and sadness. It's so wonderful to have bridged from there to successful actions.

    Thanks for the comments!

  13. Lady Baker--I'm usually a lurker here.

    I have a son "on the spectrum" who is now 16 and in many ways appears normal. Like your son, he was high-functioning all along, and his ability to use language--although in a highly i--diosyncratic way--made it possible for us to communicate with him, teach him, and develop his significant talents.

    Although he carries the diagnosis of Asperger Syndrome, and now that he has chosen to go to school (we homeschooled for quite some time)--he qualifies for Special Education under the rubric Autism as well as Intellectually Gifted, many people would see him as a bit peculiar or geeky, but would not see him as autistic.

    Getting him to this point took a great deal of our time and effort, and when he was small, made us frequent targets of do-gooder bystanders who were highly critical of our parenting. However, I would do it all over again because what we have now is a very interesting, highly independent young man with a passion for his interests.

    I commend you on the time I know you spent with your boy, and wish you the best on the adventures to come.

  14. Kol-ha-kavode, Elisheva. Your work clearly made a difference! Thanks for the encouragement too :) I'm looking forward to those adventures!

  15. Rachel-
    Thank you for sharing this! You and Andrew consistently amaze me in your approach to parenting, and hearing about this experience makes it even more clear how strong you are. Cameron is a great kid!

  16. I wondered if you knew about Temple Grandin. I've seen the movie twice on TV. Amazing, inspiring story.

  17. Anonymous: Temple Grandin's description of her visual thinking amazed me when I was first learning about Autism. She is definitely an inspirational figure.

  18. Does concept formation in people with autism happen in the same way as for people without autism?

    1. Kate, that is a huge question, so I'm going to share some quick thoughts... and then go treat my migraine :)

      First, any comments are with the huge caveat that Autism just isn't a clear category. The term describes such a vast spectrum of individuals that I don't think anyone could make a definitive statement on how their concepts are generally formed; the group includes cognitive differences that are just too great.

      My kiddo does generalize from particulars, but the focus was, and in someway remains, extremely different. For example, he has much poorer coordination of sensory data and it just took him vastly more effort to form certain concepts. He didn't get pronouns for years beyond typical. He didn't begin pretend play until years beyond typical too; he was still focused on perceiving the toy car's wheels rolling and it took him much longer to move beyond that point.

      Also, the poorer regulation of his sensory system makes it much harder for him to pick up subtleties, especially in areas that are not of prime interest to him (like social interactions). So, it's much harder for him to form concepts in those areas because he's not getting as much data.

      For my kiddo, the issues here are issues of delays and, yes, they are major delays, but his process of concept formation is the same.