Wednesday, May 8, 2013

More Than Talking

As my kids age and their disability becomes more noticeable, I am always interested to see how they are perceived.  One thing I have noticed that other parents notice is that children's developmental levels are often determined by how much they say.  The more sophisticated the language, the more they expect.  The less sophisticated, the less they expect.  And for typically developing children this is not such a bad measure, assuming ability to express one's self is as equally developed as everything else.

But not so for autism.

For this reason, my son T's ability is usually over-estimated.  People forget he has autism, even though his language is over a year delayed.  He is almost four and still in diapers.  He is very clever at putting together scripts and other things he has heard in context, enough to fool the listener into thinking he is saying very witty things... except of course, since I have heard them all before, I know better.  Now, I am not dissing my son, I love him and he is very bright.  I love how he is coping and love how he uses echolalia so functionally.  But it does fool people into thinking he has fewer challenges then he really does....

And then we have the opposite problem with A.  She can express her wants and needs with speech output, but verbally is very limited.  For this reason, people are unsure or assume she cannot understand much or is quite severely disabled.  Now, I will not pretend she is less disabled than T, because overall she is, but many people try to do things for her she is quite capable of doing herself.  All of her language is very delayed, but she understands most of what is said, can follow two step directions and has some strong daily living skills, relative to others on the spectrum.

So - please, please, please, do not judge based on ability to talk.  Talking is one area of ability, and a child may be perfectly verbal but struggle with self-help skills, emotional regulation, cognitive functioning, or behaviour issues.  Or a child may be completely non-verbal but has age appropriate receptive language and self-help or daily living skills and academics.  You cannot know one way or the other based on talking alone.  My best advice?  Presume competence and back off as needed.