Martyr Moms and Functioning Labels.

One thing us autistics get tired of “you must be high functioning because you can type and defend autistics.” I deal with this a lot but last night weighed on me.

Let me explain. There was a post in a large family group about have a medically complex child and not wanting any more kids. Come to find out her child has a rare disorder that causes her blood sugar to drop. I have a diabetic son so I gave some suggestions. I feel really bad for her because her child’s endocrinologist was saying no dexcom when it has saved my son so many times in the middle of the night.

Then another commented about having a “child with autism” and she went on to having more children. This bothered me. Then I answered “As an autistic I am happy this did not stop you from having more children.” Her response hit a nerve. “. . . no, you’re right, I didn’t stop, which is why I said we had more. What I said was, I did not want anymore children after we learned of his diagnosis, and then his behaviours came in full-force. You obviously are on the high spectrum; he is not. It took many years of therapy, and medications to have him at a level where he was safe from self-injuring himself, and from harming others. I will spare you the stories of my broken shoulder, collarbone, broken nose x3, hair pulled out from his violent rages, bite marks where chunks of flesh were pulled out with his teeth…and on and on… due to his frustration with his sensory issues, his expressive communication skills, and the like. The sleepless nights, the food aversions, the tantrums that continued well after we had more babies. I did not have a typical child-rearing experience with him, and it frightened me. When we did decide to have more, we made sure we were financially ready, and emotionally ready in the event we had another child with a diagnosis. We never loved him any less, or our other children any more, but we ALL had to be ready to take on what may have been. He is almost 24 and is doing very very well. But yes, as I said, after having that diagnosis with him, I did not want anymore children until I knew I would be able to handle it, and that he would be able to as well.”

Just because I can type does not mean I am “high functioning.” Functioning labels do not explain how I experience being autistic. It describes how YOU experience me being autistic. I did not speak until I was five. I still have trouble with every day life. I had to start my own business in order to have a decent income.

We are not high or low functioning. We are just autistic. Some might need more support than others. I am not going to tell the world what my specific needs are. 

This type of talk is very harmful and very abelist. This is what separates the autistic community from the autism community. We would love to bridge the gap but these martyr moms do not and try to silence us every chance they get. We need to work together to make the world a better place, not against one another.

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