Tag Archives: parenting an autistic child

What We Would Have Done Differently Had We Known What We Know Now is the longer version of the above title for this post.

Someone left a comment on a post I wrote about a year and a half ago – Want to Know About Autism?  Ask An Autistic.  In the comment they asked a number of questions and because they are questions others have also asked, I’m writing a post devoted solely to answering them.

“What would you have done with Emma if you had not fought your seven year war? How would you have spent that time with her knowing what you know now? What do you think would have been of most benefit to Emma when she was still too young to type? How would you have gone about learning assuming competence?”

“What would you have done with Emma if you had not fought your seven year war?”

The “seven-year war” they are referring to is one I describe in that post detailing all the things I did upon receiving my daughter’s diagnosis.  To contemplate what we would have done differently had we known what we know now is both exhilarating and painful, but I’m going to give it my best shot…

The short answer is – we would have done everything differently.  The longer answer is vast, so vast I don’t know that I can do it justice in just a few paragraphs, but I will try…

Once we were given her diagnosis I would not have done any of the therapies suggested other than occupational therapy.  I know this will strike many as radical, even negligent, but I am speaking very specifically about my daughter.  Right from the beginning, knowing what I know now, would have changed all of my thinking, reactions and response to my daughter.  All those years spent trying to “help” her were years marked by fear, distress and worry.

I know now how sensitive Emma is to other people’s emotions, how she picks up on all of that easily and how distressing it can be for her.  So there are things I would have done that actually have nothing to do with Emma, but that would have helped me be a better parent to her.  Reducing my fear and constant worry would have been helpful to all of us.  In order to do that I would have had to ignore pretty much everything I was being told about autism and what that meant for my child.  The information we were given in 2004, the year Emma was diagnosed, was presented as fact.  And, as it turns out, it was incorrect.  I cannot think of a single thing we were told that did not prove later to be wrong.  Think about that for a second…  Every single thing we were told was incorrect.  Everything.  (Richard, correct me if I’m mistaken about this.)

A quick aside –  this is where, the way our society is structured has done none of us any favors.  If we lived in a truly inclusive society where autism was not denigrated, but was considered just another neurology, no better or worse than non-autistic neurology, where there was no judgement placed on either neurology, but more was treated as fact, where everyone came into contact with both neurologies on any given day in a variety of settings, “autism” would not be viewed with the fear and worry and even terror that it currently is.  When I say “inclusive” I am using that word literally and not code for “tolerating” or “understanding” or even “accepting.”  I mean a society where all neurologies are treated equal, without comparison of one, which is thought to be superior, to another considered inferior.  An inclusive society would mean “accommodations” would be embedded into our daily lives seamlessly and without fanfare, just as the many accommodations non-autistic people enjoy without even noticing them, do.

I would not have sought out the advice of the slew of doctors and specialists we carted her off to.  I would have surrounded her with music, singing, dancing, lots and lots of movement, gymnastics, swimming, trampolines, trapeze, art, literature, poetry (much of this we actually did do.)  Had Soma begun her center at the time of Emma’s diagnosis, I would have begun learning RPM and implemented Soma‘s suggestions for very young children right away.   Beginning with isolating the index finger to point independently and moving on to presenting written choices, for everything and anything – “do you want some M-I-L-K or do you prefer J-U-I-C-E?”  Writing each letter, while saying the letters out loud as I did so.  Encouraging her to point to the two choices I wrote.

There were many things, looking back, that we did right, things we did for both our children, such as getting her on skis when she was just three years old, horseback riding, lots of hiking, carrying her in a back pack, Emma loved being carried in a Kelty pack so she was able to view the world at the same height as me.  We took the children to the theatre, puppet shows, kids concerts, and traveled on airplanes when they were both babies.  I began brushing their teeth the minute that first tooth came in, I cannot tell you how grateful I am that I did that.  I began flossing their teeth the instant a neighboring tooth appeared.  I read to the children and provided both of them with lots and lots of books.  We exposed our children to art and literature; these are all things I would not have changed.

“How would you have gone about learning assuming competence?”

Presuming competence is ongoing.  It’s a practice, a mind set and it requires a leap of faith.  Or at least this is how I have come to view it.  Presuming competence is less about an idea and more about doing.  It’s an action, one I must be constantly mindful of and vigilant about doing moment to moment.  My past thinking is so ingrained, changing that thinking is something I must work hard at all the time.  First I must become aware that I have ingrained thinking that is not presuming in my child’s competence, second, I must accept that my ingrained thinking is unhelpful and hurts my child, and third slowly, slowly work to do, and  think about, things differently.

I’ve written about presuming competence ‘here‘, ‘here‘, ‘here‘ and ‘here,’ but I will just add that this is very much something I continually struggle to do better.  To peel back the layers and layers of misinformation and assumptions that get in the way of being completely present in a way that is nonjudgmental and most helpful to my daughter so that she can flourish is not easy, but it is the single best thing I have strived to do.  It requires actively ignoring the more common thinking about autism and what that neurology means.  It means actively questioning everything I am told by people who present themselves as experts.  It means listening, really listening to my daughter.  It means sitting with the discomfort that I have done so much of this wrong.  It means forgiving myself for my mistakes.  This is the path I find myself on at present.

And truthfully it is Emma who is leading the way, my job is to follow, listen, learn and cheer her on.

Emma ~ January 29th, 2014