Semantics, feelings or something more?

22 Jan

For a while now I’ve been told in various support groups, forums, talks etc to not refer to my child as autistic but as a child with autism because the term “autistic child” puts the disorder ahead of the child. I always thought that was feel-good language designed to make parents feel better and de-emphasize the actual disorder. Different Strokes.

But, increasingly I’ve noticed of late in comments on articles and online forums individuals on the autism spectrum demanding to be referred to as autistic. There reasons are varied, most commonly I’ve heard that it makes it sound as though the person has a disease when referred to as a “person with autism” and I guess I can see their point there. And I very often hear the argument made that we do not ask our children how they wish to be referred to and choose, as a neuro-typical parent, what makes us happiest.

Now, my child, I can’t say if she has a preference or not or what that may be because she is non-verbal and cannot read or write, so I honestly have no idea. But I agree, at some point, we need to turn the focus outward on what those of us who have higher functioning children would prefer. Being on the autism spectrum does not preclude having strong opinions on things, including how autism is defined in relation to ones self.

But I realize that for many parents that is extremely difficult. Even parents who have been at it for years. A mother at one talk I attended told me that it broke her heart when her son told her he would rather have autism than be neuro-typical and while I could not relate to her heartbreak (see the name of this blog), I understood why it was difficult for her. It is difficult for us neuro-typicals to imagine that any path other than the one we are on is good or worth living. But the same could be said for many with autism. And I don’t really know how healthy is it either physically or emotionally to tell a child that he or she should be neuro-typical.

I also approach this through the prism of having a child on the spectrum and two not on it. I believe that yes, we may have different ways of coping as parents, some of which may lead us to characterize autism a certain way or another BUT ultimately, our children are their own people and they deserve a say. Their feelings, even if and especially if they are different, are both valid and worth consideration. Even moreso as we as parents demand that the general public accept and make accommodations for our children, we need to show our own respect for how our children feel.

On the outside, the choice between “a child with autism” and “autistic child” may seem like silly semantics to those on the outside, but this battle will rage on, particularly if we neglect the position of some with autism in favor of what makes us feel best as parents. We need honest and open dialogue on this subject. We need to see that feelings on all sides are valid and be respectful.


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