My Story

When It Runs In The Family

I’ve thought a lot over the years about why it took so long for us to realize that we were a family on the spectrum, and here are at least a few of those reasons.

  1. In our family, autism is the norm. That’s true not only in our immediate family, but among a lot of our extended family, as well, so we had nothing really to compare it to.
  2. We are the first to have an autism diagnosis in the family. So the traits that are ‘normal’ in our family (but ‘abnormal’ everywhere else) are chalked up to the person being a ‘Morgan’ instead of being autistic.
  3. We parent our kids based on our own experiences of life as a child. Everyone does this – either copying the things we liked as children, or trying to improve on the things we found challenging. And the collective wisdom of us as parents, and of our family translated into a lot of parenting strategies that are used in autism therapy – like structure; help around transitions; following children’s interests; explaining social situations before, during and after; engaging in sensory-seeking and allowing for sensory-avoiding behaviours; making allowances for scattered skills; etc. This meant that doctor’s and other caregivers missed a lot of the signs because our interventions had often given our children work-arounds, especially when they were younger.
  4. Gender affects our perception of autism. The books on autism are biased towards what autism looks like in boys. Doctors ask questions like, ‘does your child line up all of their toys or play with them’ – which might look like a little boy lining up all of his cars in a row, but a little girl might carefully set up her dollhouse and then get very upset if anyone moves the pieces around. Because autism affects the structure of the brain, and brain structure varies across gender lines, our baseline expectations for what autism looks like also need to change when we are looking at girls vs. boys.
  5. My children internalize instead of externalize their anxiety. A lot of autistic behaviours have to do with anxiety. Spinning, flapping, head-banging, humming, jumping – all of these stimming behaviours are ways an autistic child might use to cope with the anxiety of sensory over-stimulation or environmental discomforts. However, my children’s methods of coping were less obtrusive than this – texture sensitivities, thumb sucking, nail biting, skin picking, and periodic mutism don’t cause teachers and doctor’s nearly as much concern – especially in a girl – as the previous behaviours, even though they are engaged in for the same reasons.

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