Friday 29 March 2013

Fallout from the Autism Rally

This is one of those interesting comparisons which happen when you have two children with autism.  (Or at least, it would be interesting if I was a social scientist observing the situation rather than being the one stuck in it.)

Alex is on the moderate to severe range of autistic behaviours.  Nathan is much milder.  If I'd had to guess which one was going to be more severely affected by our visit to Parliament, I would have guessed Alex.  He would understand less of what's going on, he would be more frustrated at the restrictions and has much less interest in being the focus of attention.

But I would have been wrong.

Nathan has been showing some signs of real distress after our visit.  He was up for a lot of the night with bad dreams and wanted a lot of contact with me and Dave.  He's needing a lot of reassurance and having accidents.  Hopefully we can get over this regressive bump quickly but it bothers me that he's been so affected.

Maybe it's because he has just enough social awareness and imagination to recognize the potential threats in situations.  Maybe he was upset at hearing autism described as a burden on families (he knows he's autistic so he may well have taken the remarks personally).  Maybe he's starting to get ill and this has nothing to do with the situation.  I can't know because he can't articulate what's wrong.

This is one of those illustrations about how parenting an autistic child is different from parenting a neurotypical one.  A typical five year old might not be the most self-reflective and articulate person out there, but should be able to tell you if his tummy hurts or if he feels sad.

I had some concerns before we went about talking about the burdens of autism in front of the boys.  I don't ever want them thinking of themselves as burdens or something we endure rather than cherish.  There is a reality factor to it, but it isn't something they should have to deal with.  That's my job as a parent, to protect them from it.  I did my best during the discussions to talk away from them but I can't be sure what other people were saying.

I hope this is just a blip and we can get back to normal quickly.  But it shows how quickly the situation can devolve.  And how limited our tools are for getting it back on track.

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