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.

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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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A bit more of an introduction.

(I have spoken to my children about this blog -and any articles or books they’re featured in- and they are happy for me to include their pictures, names and stories. If at any point they change their minds, I will edit the blog appropriately.)

On this day, some time ago, I was lying in a hospital bed, holding this wriggly red thing and wondering, “Why does it have no eyelashes?”

Nine years later that wriggly red thing is an amazing, funny, compassionate child called Emma who has taught me a massive amount about life, autism, myself and many other things. I’ve also added two more wriggly red things to my brood: seven-year-old Dylan and three-year-old Heather.

In our crazy, neurodiverse home no two days are the same and no moment is predictable. Our home is loud, funny and full of love and chaos.

This time last year Emma was desperately unhappy, she was anxious, self-harming daily and not speaking or engaging with her family at all. We could see that it was the pressure of masking at school which was causing her anxiety so made the decision to pull her out of school to home-educate her. Since then her emotional, social and academic progress has been exponential. In December 2017, seeing how well home ed’ had worked for Emma, I decided to pull her brother out of school too as he was also not coping in mainstream school; he was spending his days hiding under a table shouting, “LEGO! LEGO! LEGO!” and making no social or academic headway what-so-ever.

Planning Dylan’s school day requires some cunning as his PDA (pathological demand avoidance) makes him anxious if I tell him what to do. To get around this I usually offer him a choice of two tasks to complete so he has some control over his education. We also spend a lot of time learning in the community and by taking lots of trips. The children love visiting farms, zoos and museums. They also really enjoy trips to the beach and forest with our dog (Daisy). Home education gives us the freedom to visit lots of wonderful places on days when they’re quiet, which, for a family who can’t cope with too much sensory input, is marvellous!

I will look forward to sharing details of our journey on here over the coming years.

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An Introduction.

I am an autistic mother of neurodiverse children, I love writing and am passionate about spreading acceptance of neurodiversity. I want to live in a world which is accessible by all and in which autistic and neurodiverse people aren’t made to feel excluded or “weird”.

This page is mostly about my home education and parenting journey with my three children: Emma (or sometimes Reggie or Max) is 9 years old and diagnosed with Asperger’s. She is happy for me to usually use female pronouns when talking about her but she is genderfluid and sometimes genderless. She is one of the most compassionate, empathetic and funny people I have ever met in my life.
Dylan is 7 years old. He is under assessment for PDA and ADHD. He’s a ball of energy and an amazing climber. He’s also very clumsy. In seven short years, he’s been glued back together at the hospital around 6 times (I’ve actually lost count!). He wants to get into parkour when he’s older; I think I will be grey before I’m 40 if he does!
Heather is 3. She is the devil in pigtails. Her hobbies include making up stories, looking at animals and winding up her older siblings and watching them go! She loves annoying her siblings and has lately added the words “bloody” and “idiot” to her vocabulary and she uses them with abandon.

I have been home educating my children since I saw how much the British school system was damaging them in the Summer of 2017. Since we began our home education journey my children have come along in leaps and bounds academically, socially and emotionally. I love our little homeschool and only wish I’d done it since the beginning.

In the beginning the Universe was created. This has made a lot of people very angry and been widely regarded as a bad move. – Douglas Adams