Wednesday, June 11, 2014

My first piece of "fan mail"

(From March 2014) "You know, ever since you got diagnosed, it's like you're pushing this flowery view of autism on everybody all the time. And it colors everything you think or say about autism. I'm happy that you are okay with it for yourself, and I'm happy that your kids are doing well. But my kid is nothing like you, and nothing like your kids, and nothing like "Carter." I 'act' like I'm okay for the sake of my kid. But I am hurting for him that he has to live the way he does and get treated the way he does. It's hard for me to see posts like yours and other people and not be bothered by all this progress, when it's not like that for us." -(name withheld for privacy)

Someone sent me that PM earlier. They had sent another preceding it, because they said that they were bothered by the post that I made tonight about "Carter." But after engaging with them a little longer, it seemed to me that their frustration was not just about him, but about me. Among other things, they shared what I've quoted above.

With all due respect, this seems like what I've heard many autistics describe as the "You're Not Like My Child" argument. As such, very little of what I could say in response would likely be considered. I am already being dismissed because it has been perceived that neither I nor my autistic children "struggle enough" to understand others' point of view, or the experiences of others that differ greatly from mine.

And no, I don't profess to know nor understand *everything* about someone else's life. But I will say that it is presumptuous and unfair to assume that my CHOICE to accept myself and my children and to celebrate rather than mourn who we are means that I don't understand struggle.

Oh, I understand struggle. All too well. I've seen and experienced many things that if I went into detail would require trigger warnings all over the place. I have made a conscious decision to "carry on" with life despite obstacles, and I have been blessed that a great deal of the challenges I've faced in life are now a thing of the past. Some remain, but many are gone. I thank God for that.

But that doesn't mean I have relinquished my right to have a perspective and an opinion on something simply because I am not presently "overwhelmed" by it in this season of my life.

Lastly, I make no apologies for being proud of "Carter." He is not my child, but why not think it's great that he is showing these strengths? And why not share that joy with others? As one of my (non-autistic) children has intellectual disability, I know how easy it is for people to decide that such a person is a "lost cause" rather than pushing for them to work at their individually determined pace and grow. I was pleased that at least in this case, the status quo did not apply.

I was not implying that since "Carter" is obviously far above the academic level that they'd (incorrectly) assumed of him that he is better or worse than anyone else!

And...that's all folks! Have a great night/early AM!

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