The Spectrum — When It’s Something More…..
I have read your article on what it’s like to be a mother who is struggling with her daughter’s Autism — or as I like to call it, Autistic Spectrum Difforder (ASD). And it might not make sense, but I can sense how you’re sliding into that chasm of despair, depression and anger towards ASD.
First of all, you’re not alone when it comes to being an autism parent. I’m sure that my parents, back when I was in elementary school, had these feelings too, almost like they’re lost, they’re clueless, they need help to understand why I was behaving the way I was (I am also on the Spectrum, diagnosed with Asperger’s under DSM-IV, and currently 25 years old.).
Your daughter’s ASD is nothing to be ashamed about, nothing to be scared of, and most certainly not something to be despised. Your language (“Now I’m trying to protect other people from this nasty beast called autism.”) hinted at feeling negatively towards autism. But here’s the thing: this is not something that people should be shielded from. The less exposure other people have to how Maddy behaves, the more ignorant they become (it also works the other way around: Maddy can be around other people — provided that she’s comfortable with people other than her parents — which may help her learn how to socialize). I’ve seen this in the town I grew up in — there wasn’t enough knowledge shared with the community I grew up in (especially within the Italian Catholic Church congregation) that it led to me and my family being ostracized by the community out of fear and ignorance; basically, these people did not understand how I was different from them, and it scared them. I should point out that other factors were at work, but they aren’t relevant to this topic.
From what you’ve shared, it seems that Maddy has sensory sensitivities, mostly when it comes to her hearing. Your laughing might be too loud to her, but it’s not your fault, and it’s no reason to stop smiling and laughing. It also seems that she is exhibiting echolalia, where she mimics the laughter without attaching feeling or emotion to the noise she heard you make. In a way, it’s part of her learning process. It might even be part of her language, and I’m not talking about speaking ‘Merican here…..
When it comes to autism, no two people on the Spectrum are the same; there’s a saying (that is irritatingly shot back by so-called “martyr parents of autistic children” at Autism advocates like myself whenever we try and provide our insight) that goes “When you’ve met one person with autism, you’ve met one person with autism.” Maddy might not have some of the skills I do, but she’ll develop her own, and shine in her own way.
Functioning Polarity — Enough’s Enough
I’ve noticed how you remarked that you were “lucky enough to have a high-functioning child”. This made me cringe and worry for future-Maddy, the one who is feeling the angst and turmoil times a hundred while navigating her own maze of puberty! It’s because neurotypical (NT, as in, without autism) people fail to understand that to fashion this polarity of functioning is not only highly inaccurate, but also, in a way, emotionally damaging. Same thing with how people use the adverbs, “severe, moderate, mild, profound,” etc.
There is no high-functioning autism. And there is no low-functioning autism. It’s just autism, and where people are placed on the spectrum is often misrepresented as a one-dimensional scale, like a line where the ends are labeled “high-functioning” and “low-functioning”. That’s because the Autism Spectrum is not a one-dimensional line; it’s actually a four-dimensional sphere, where our placement in the sphere changes over time. And so many NTs fail to see that, resorting to measuring how “well-functioning” a child on the Spectrum is by their ability to speak; if they can speak and hold a conversation, they’re “high-functioning” or their autism is “mild” but if a child can’t speak or even communicate verbally, they’re “low-functioning” or their autism is “severe”.
You shouldn’t need to worry about how “well” Maddy is functioning compared to a neurotypical child. All you need to know is that she is Maddy-functioning: she is functioning within the parameters that the wiring in her mind is capable of.
That’s what being on the Spectrum is about: our minds are wired differently, which leads to us processing information differently, as if we have an operating system that is different from everyone else’s. And it might seem tiring at first because you don’t know how to deal with this, but perhaps it’s not a “curse,” that many people may see it as, but rather a gift from God; isn’t there a line in the Bible about obstacles in our path???
“There hath no temptation taken hold of you but such as is common to man. But God is faithful; He will not suffer you to be tempted beyond that which ye are able to bear, but with the temptation will also make a way to escape, that ye may be able to bear it.” — 1 Corinthians 10: 13
In less formal words, God does not give us what we cannot handle; I think that He gave you Maddy in her entirety (with her ASD) because He knows you are strong enough to raise her.
For More On Living With Autism…..
I have a few links here that I’d like to share with you (and anyone else reading this response) in case you’re like, “Huh…what does the rest of the Internet say?”
- Parents.com article: “Stop Calling Kids With Autism ‘High’ or ‘Low’ Functioning!”
- EmbracingtheSpectrum — “My Son Doesn’t Need to Be Fixed!”
- Andrew Solomon: “The Autism Rights Movement”
- Andrew Solomon: “Autism — An Insider’s Guide”
- Autistic, Not Weird — This site is awesome; it gives tips and insight from the autistic perspective! Just what we need!
- And finally, the Autistic Self Advocacy Network (ASAN), because it’s true: “Nothing about us without us!”
If you have any other questions, please feel free to reach out to myself or others (such as Autaitchel). I’ll do my best to give a great and useful answer!
With understanding and support,
Lady Eden :)
P.S. (an edit/addendum) I shared your original post with a member of my support staff and to her, it sounded like you were overwhelmed and tired. Might I suggest reading about the Spoon Theory? (It affects everyone with chronic conditions/illnesses and their families. Also, my spoons are more like sporks! #SporkTheory)