Autism

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 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:

  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 a perspective as an autistic person’s.
  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 autistic adults 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 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

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4 Comments

  • Reply
    Kristin
    2017-01-12 at 3:06 AM

    Keep doing what you’re doing mama! You’re awesome for being his voice and an inspiration to other NT parents like my husband and I.

  • Reply
    Moni
    2017-01-13 at 8:40 PM

    I’m not really good with words but I just want to say that I really appreciate your blog and your point of view. My son was recently diagnosed and I did what any parent would have… I obsessively researched the internet for answers. I was grieving for all the things I had hoped for my child and completely paralyzed by the fear of unknown. I was angry. I found another blog and I read it from front to back hoping it would have all the answers for what was going on with my child. The person writing the blog was, in hindsight, very negative and perpetually upset about her child’s diagnosis. This had a horrible affect on me. If this mom couldn’t deal with it, how in the world could I? It wasn’t until I stumbled across you on Instagram (and subsequently your blog) that I began to let go of that anger. He’s still my son, my sweet boy who has my entire heart. Your beautiful words about your son made me realize that there is more to my son than just his diagnosis. For that, I am forever greatful. Your blog drew me out of what felt like my darkest moments. Thank you for that.

  • Reply
    Maria
    2017-01-16 at 6:04 AM

    I love your blog I am a mom of a 3 years old with mild to moderate AUTISM …..

  • Reply
    Tina
    2017-02-22 at 4:07 PM

    Brilliant post and I’ve touched on this myself. Particularly love 3 and 4! 🙂

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