The Hardest Thing About Autism

I want to make it clear that what I’m about to say is my experience and is not meant to describe the experience of any other autism parent.

I understand that there is pressure from within the autism community to not see or speak of autism in a negative way. I hear those concerns, especially from those who are on the milder end of the spectrum.

Having said that, I have two children with autism, aged 13 and 15. Since they were diagnosed at an early age, autism has been a part of our life for a long time. We have had a lot of great times and a lot of difficult times.

Being scared of them running off, destroying property and hurting siblings has all been difficult. But there is something else that is harder for me.

It happens when I meet children the same age as my children and realize how far away they are from “normal.” I know that I’m not even supposed to speak like that, but I don’t know how else to describe it. These children have friends, get part-time jobs, prepare to get their driver’s license, think about what they will do for a career and so on.

Our children are both nonverbal and I would love to be able to have a normal conversation with them. The autism affects their behaviours in such a way that they live in a group home and not with us. Other parents take for granted these simple things that they can enjoy. But for parents with children on the severe end of the spectrum, this is a daily grief.

I do not resent other children who are not affected by autism the way our children are. But it is a difficult reminder of hopes and dreams that ended with a diagnosis.

Stephen Bedard

 

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4 thoughts on “The Hardest Thing About Autism”

  1. Hi Stephen, I've been following you on Twitter and checking out a few of your posts for the last few weeks. This one resonates, for sure. We have 2 kids age 14 and 18, both on the spectrum as well — although they are as different from one another as night and day, with their own unique strengths and challenges. I also feel that sense of our family being so different from the norm. I know, "Normal is just a setting on the dryer" — but it is still difficult at times. I think as parents we need permission to grieve certain losses; only then can we move forward to live joyfully and realistically in our lives AS THEY ARE. Thanks for writing about this.

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