(Inside: Even while appreciating all of the beauty and uniqueness that comes with autism, there are some times when it feels like autism is ugly.)
Here’s the thing, friend. I spend a lot of time talking about neurodiversity. I share the things that they won’t tell you about autism, and I speak out against harmful autism therapies and Autism Speaks that try to make autistics act more neurotypical.
I firmly believe that all autistic people are unique and beautiful, and I would not change them for the world.
However, I feel like I need to share the other side as well. Sometimes it feels like autism is ugly.
This post is not about me being a “warrior mommy” and it isn’t about disrespecting autistic people, it’s just about sharing the reality that we face.
5 Times When it Feels Like Autism is Ugly
Autism Meltdowns
I’ve written about autism meltdowns and how to tell the difference between a meltdown and a tantrum, but I haven’t really gotten into the nitty gritty about meltdowns.
When in a meltdown, autistic people can shut out the whole world around them.
Meltdowns are loud and they can be downright scary.
I suffer from chronic migraines, so A-Man’s screaming meltdowns can be extremely hard on me some days.
We both have extreme sensory needs, and there are some days where those needs just do not mesh.
There are days where he’s screaming at me, and I’m losing my mind, and we’re barely making it through.
Aggression
Autism can bring a lot of aggression, whether from being frustrated with communication struggles or needing the sensory input that hitting and pushing brings.
While it becomes easier to deal with the aggression when you can understand the reasons behind it, it still is never really easy.
During my pregnancy with Miss S we had to get pretty creative in keeping me (and mainly my belly) safe from aggression.
A-Man was just about belly height, and he would hit my stomach when he was angry or overwhelmed.
The Late Nights and the Worrying
Autism does have a way of causing some really late nights.
On one hand, A-Man really struggles to settle enough to fall asleep sometimes, but luckily we’ve been using this DreamPad Music Pillow which has helped A-Man fall asleep easier and stay asleep all night.
What that pillow can’t fix, however, are the late nights up worrying.
Will my son get the services that he needs? Will he get the respect that he deserves? Will he be bullied? Will his therapies help or hurt him?
Am I advocating for him or drowning out the voice of disabled self advocates? When he’s an adult, will he be thankful that we used identity language and did what we could to respect the autistic community’s opinions?
What if my son wanders away one day? What if he doesn’t make friends? What if people take advantage of him?
What if he’s labeled a problem child or a “brat”?
All of these worries are things that keep me up at night.
I like to hang on to these Bible verses for special needs moms when I get too worried. They give me comfort.
Communication Struggles
I’ve covered autism communication at length in this post, and I covered PECS, or picture exchange communication system here.
Unfortunately, the communication struggles that autistic people face can be extremely frustrating for them and for those they’re communicating with.
A-Man is able to form his words correctly, but he struggles with expression and knowing what to say when.
It can be really frustrating for both of us when I know that he wants something but I can’t figure out what, and he can’t find the words to tell me what he needs.
Autism Mamas are Always Fighting
I think this is the hardest part. As autism mama’s, we are constantly in fight-mode.
We’re fighting for the diagnosis, fighting for IEPs, fighting for respect for our children.
We are constantly fighting for our children to have a better future.
We go through the research about autism therapies, we vet out the different autism organizations, we face the eating struggles and communication delays, and we read the books about autism.
We are constantly in go-mode, and it becomes exhausting. Then once we’re exhausted, we struggle to keep our patience and understanding. It’s not an easy thing being an autism mama.
While I wouldn’t ever want to paint autism in a bad light, I think it’s really important that we share all sides of autism.
Yes, autism is a beautiful thing. Yes, neurodiversity is not only necessary, but beneficial for society.
And yes, sometimes it can feel like autism is ugly.
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The ugly side of autism can be downright jarring for people that don’t have experience with ASD. It’s tough to explain to people that a meltdown is not a tantrum and that the aggression is oftentimes part of being on the spectrum. Thanks for being so willing to share Kaylene!
You are so right, friend. It is so hard to explain the ugly side without being disrespectful to autistic people. <3 I'm glad that you enjoyed the post!
This post really hits home! Brought tears! the wording, the absolute patience,the explaining, dealing with stimming, all in a days work. i get so frustrated with non autism parents always giving advice even if your not looking for it. always critizing on parenting skills being the problem. and at the end of the day, autism mommas are alone, because even your six degrees of separation just doesn’t get it! they don’t get why……why a vacation gives anxiety, why going to a family function is exhausting, why being an autism mom means you have to be more controlling, more knowledge, why u can’t take ur eyes off ur kid when at the play ground, not even for a minute.cause when you do he’s either taken off or fighting with children who don’t understand……etc……
Oh Mama. You’re not alone. <3 I'm glad that you found this post, and my site. <3 Keep staying strong, Mama!
The ugly side is…pretty ugly. I think as long as you don’t go into invasive detail, know that it sucks as much for the autistic person as much as it does for you, and don’t only discuss the ugly side, if not more, then you’re fine.
I’m exploring the ugly side of giftedness because it seems that no one else is aware of it. So what if my head is strong? What about my heart?
Have you checked out Colleen’s blog Raising Lifelong Learners? She writes a lot about gifted and 2e kids, and I’ve found it really helpful!
I am SO glad to find this site! I have a 19-year-old daughter with ASD and cerebral palsy. Her life is such a struggle, which makes it difficult for all family members. Just reading through a few of your writings has been so helpful. They have all affirmed what I have learned already but have been unable to convince others, even Dad and siblings, about. I will be asking each person in our family to read your posts so they can better understand what all the behavior issues are all about. I know I’m not alone in parenting a special needs child, but it sure helps when I stumble across sites like this one! Thank you for what you do!
Oh friend, I am so glad that you stumbled upon my site as well! Comments like this help me keep writing. <3 Thanky ou so much for sharing!
Thanks for doing these posts, this is the second one I have read. The first being the Encouraging Bible verses for Special Needs Moms. I am not a mom, and I never will be, but I do have Asperger’s Syndrome, and I found this very comforting for lack of a better word. It feels good to be understood, in a world that lacks understanding.