To the mom who told me to stop talking about my child’s autism because I’m not autistic

To the mom who told me to stop talking about my child’s autism because I’m not autistic.

First of all, I am.

Today I was told by an autistic mom that I’m being disrespectful because I shared my family’s journey with my son’s autism and used the hashtag #actuallyautistic on my Instagram page. Me, his mom, his guardian, and the caregiver of this non-verbal little boy. In her world, only autistic people are allowed to talk about autism. Neurotypical (NT) parents of autistic children should stay quiet because they don’t know what it’s like to be autistic. They don’t know what it’s like to experience a life defined by autism. Here’s what’s wrong with that:

Everyone should be able to talk about autism

1. You’re assuming that all parents of autistic kids who write about their child’s autism are NT. Not everyone with an autism diagnosis screams it from the rooftops.
2. NT parents’ feelings about and experiences with autism are as valid as the perspective of a person with autism.
3. You don’t know about the severe side of the spectrum because many people on that end don’t have the ability to talk about it and might never be able to. Their perspective shouldn’t be heard because they can’t speak it themselves?
4. You’re using “we” as in “we autistic adults”. You assuming that all adults with autism share the same point of view is tantamount to doing what you chastised me for. Surely you know the saying, “if you know one autistic person, well, you know one autistic person”?
5. Not all children are lucky enough to have a voice of their own. Not all autistic people are high-functioning like you either. My son is non-verbal. He can’t share his story. I’m his voice. He doesn’t have the luxury of a disability that, in your case, wasn’t even diagnosed until adulthood.
6. Spreading information about autism is helpful to many people who don’t know what autism looks like, or have only seen it conveyed as a quirky personality trait. Sharing our child’s autism journey is a way to raise awareness and acceptance.
7. I love my son more than anything in the world. His autism is a part of me. His autism is now part of many people’s lives, simply because they love that little boy of mine. They want to know how he’s doing and they want to see his progress. If that makes me a disrespectful mom, then I’m ok with it.

#actuallyautistic