What it’s really like to be an (honestly, I am so sorry for typing these words) “autism mom” *vomits*.

(This post is one from my Facebook posted in May 2018.)
Aaaaaaaaaaaargh! So this questionnaire popped up on my timeline as a “suggested post” this morning. The puzzle pieces and use of the word “Autism Mom” instantly triggered me. I clicked the link and was greeted by the following message: “Autism is a diagnosis no mom wants to hear, but strength emerges to help us overcome the obstacles for the sake of our child. Sharing your story is a tribute to you and all autism moms around the world.” By this point, I was swallowing bile and shaking with anger so I went away for a while to calm down. After I put the kids to bed tonight I typed up the following in response to their patronising questionnaire. Probably not the answers they were hoping for.


What is it like being an autism mom? The ups, the downs, and the emotional struggle.

My children are wonderful, creative, intelligent people. My daughter is the most empathetic person I’ve ever met; kind even to those who (in my opinion) do not deserve it. Thanks to a lack of understanding regarding autism, kids (and some adults) can be evil. Being neurodiverse in a neurotypical world isn’t easy for my children. They face prejudice and cruelty on a near-daily basis. My daughter got bullied daily at school yet she still sent Christmas cards to and invited the very kids who bullied her to her birthday parties. Why? Because, she explained to me, we don’t know what is going on in those kids’ lives and minds, we don’t know why they act the way they do and excluding them and being nasty to them makes her just as bad as them. My son is less understanding towards the people who make his life hell but he’s still a caring, loving person with a hilarious and unique view of the world. His understanding of history is astounding and he’s always teaching me fascinating new facts. Being a parent to autistic children isn’t hard or a “struggle”. What is hard is trying to raise autistic kids to be happy adults in a world dominated by neurotypicals, in a world where difference is frowned upon and penalised. What is hard is feeling as though I’m screaming, unanswered, into a void for my children to be treated like humans and for them to receive the support they need from school and other services. I home educate my children now because they were losing themselves in the school system. I hated watching my daughter’s vibrant personality dull and disappear thanks to the constant grind of bullying and being subject to punishment for being autistic at school. I despised watching my funny son become depressed and withdrawn thanks to teachers who couldn’t see what the sensory onslaught of the classroom was doing to him. Being a parent to autistic kids has its ups and downs, just like being a parent to neurotypical kids. We have good days and bad days but the good outweigh the bad because I am understanding of my children’s needs: I know that forcing my daughter to eat white food will cause her immense distress so I don’t serve her white food. I know that my son needs visual reminders to plan his day, so I make him visual reminders and help him use them. I know that the bright lights, crowds and noise in the supermarket is too much for my children to handle, so I don’t make them come to the supermarket (or, if I absolutely have to, I make it easier on them with ear defenders, dark glasses and stim toys). My children and I have fun together, we love reading stories, trips to the forest and caring for animals. My daughter adores drawing and is a fantastic artist. My son is very interested in history and loves taking trips to museums.

What fears do you face as you raise your child?

I fear that my children will lose sight of who they really are if they become too affected by the criticism and hate thrown at them by the neurotypical world.
I fear that “masking” and trying to fit in just to make neurotypical people more comfortable will hurt my children’s mental and emotional health and will lead to lifelong psychological problems.
I fear that a lack of autism understanding means they’ll have difficulty finding employment, even though they’re capable and intelligent people.
I fear that the one track mind of many neurotypicals regarding communication means that when my son communicates his needs and wants in any way other than verbal, he will go unheard.
I fear that my children and I have to justify their behaviour with the words, “They’re autistic” instead of people just accepting that not everybody is going to react to the world the same way.
I fear that some “autism charities” are still searching for a “cure” that nobody on the spectrum wants.
I fear that the stigma attached to autism is so great that even a site which claims to be there to raise acceptance of autism uses the sentence, “Autism is a diagnosis no mom wants to hear…” I fear that parents are being told it’s natural to enter a “mourning period” upon hearing their child is autistic as if autism is some terrible beast which snatches children away from their families. I have a lot of fears as I’m raising my children but none of them are because my children are autistic, they are because my children are autistic in a world which fears autism.

What do you wish other moms knew about what you go through?

I wish other people knew that my children are amazing, funny, compassionate people. I wish that instead of looking at me with pity when I tell them that my children are autistic, they just accept it as another facet of my children’s personalities.
I wish I didn’t have to say, “They’re autistic” just to stop other people staring and tutting and making snide remarks when they see my children dealing with difficult situations in their own way. I wish that acceptance was truly acceptance and people just accepted that the world is made up of many different types and we shouldn’t have to explain ourselves just to make you stop judging us.
I wish that other parents of newly diagnosed children knew that a “mourning period” is not expected or normal, your child is still the same child they were yesterday: love them, accept them, empower them to be themselves and they will show you how strong, capable and wonderful they really are.

Do you have other autism mommies who have inspired you?

Absolutely not! “Autism mom” is a term that turns my stomach. As if autism is some personal attack on the mother.
The people who have inspired me are people who are actually autistic. If you’re reading this and have a recently diagnosed child, I implore you to speak to people on the spectrum, learn what their world is like, learn what they dislike about the neurotypical community and how it treats neurodiversity and strive to make a difference. Educate others and empower your children. Don’t make them think they have to hide who they are to make other people comfortable.

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