Again, it’s been a long time between posts.
I have so much to say, often in my mind, subjects and insights that I feel may, just possibly, be beneficial to the greater good of autism awareness – yet my exhaustion very much gets the better of me.
Also, after a lengthy, yet sporadic self-analysis as to why I lack the desire to write for “pleasure”, it occurred to me that my life is so hefty in existential weight, it almost seems flippant to do so, as I am unsure if the levity of our situation can be expressed with a casual blog post, without trivialising the temerity of the overwhelmingness of it all.
Living with autism in your life is like gaining a new sun to which your own personal Earth revolves. Everything I do, everything I witness, is, I’ll be honest, tarnished by autism.
Starting each day between 2 and 4am aside, because this has in fact become an “aside” in my life, as it is very much now just a given I barely sleep each night, and no friend, nor professional seems to be able to grasp the significance of this aspect as I apparently cope with it “too well”; my daughter’s autism is that of the classic form.
Too many times so far, her issues have been dismissed instantly as when I bring her difficulties in to a conversation, as people wrongly understand due to their media-driven ignorance, that my daughter has Aspergers Syndrome.
Autism, in the broader understanding in regards to the general public, means a fancy way of saying Aspergers.
I make note, at this juncture, that of course one and all should indeed not trivialise the daily hurdles met by those with Aspergers and their family and friends, however, when it comes to classic autism, we’re cooking entirely different kettles of fish.
I almost can not fathom a way to start to express the differences between Aspergers and classic autism.
I can not fathom, and I don’t know if I have the strength of mind nor the time and brevity to do so.
Here, however, is a nice example of how not understanding the difference can cause a few extra issues in one’s already stressful life:
The cat has fleas. I don’t know this yet, as I did de-flea the cat one month ago, yet unbeknownst to me, these are evolved super-fleas we’re dealing with, and as it turns out, they are now immune to the standard, over-the-counter flea killers you’d normally use.
However, my daughter’s body knows there are fleas first – she has an innate desire to either sit on the floor constantly and examine the specs of dust and debris that live there, push her face against the warm, purring body of the cat as he lies in his basket (and sing “Ding-Dong-Bell – Pussy’s in the Well!”), or lie front-down and place stickers all over the laminate flooring.
So, due to her desire to reside so close to the ground, she ends up with flea bites on her ankles. With the flea bites, comes incessant scratching, which draws alarming and somewhat gratuitous amounts of blood.
Hence, I call the doctor.
(Of course, by this point I understand what is the initial cause of the rash, and I would like to add that the flea situation was well-and-truly dealt with!)
Before seeing a doctor face-to-face, I must converse with a stand-in doctor via the phone, and the conversation goes like this:
Mamma Socks : I believe my daughter has flea bites from our cat [I reiterate profusely for them that, out of sheer embarrassment, of course the fleas have been dealt with] – they are on her ankles, and because they’re itchy, she’s scratching them until they bleed.
I can’t tell her to stop scratching them because she has autism, so I was wondering if there’s something you could do to help with the itching, as I think that would alleviate the problem.
Doctor : [tone somewhat dismissive and unapproving] I’m sorry, you say she has autism – why does that mean you can’t stop her from scratching?
Mamma Socks : She’s non-verbal. My daughter doesn’t understand what “stop scratching” means.
Doctor : Oh, I’m sorry, I assumed she was verbal with her autism.
The doctor assumes, instantly and wrongly, that when I say “autism” I mean Aspergers- as children with Aspergers do not generally suffer from extended speech delays, and this is often the reason Aspergers Syndrome is not diagnosed until children are much older.
Now, I’m sure that at this point many parents of fully-verbal children with Aspergers could argue that it may be a task to tell your child exactly why they shouldn’t itch, but when your child is non-verbal, the story is really elevated to another level.
“Don’t” – stop, perhaps, my daughter will understand.
“Scratch” – maybe she knows what I mean by this, but it’s unlikely. I can indeed scratch her and say “scratch” over and over again until she understands the meaning…
However, “don’t scratch” actually means, in typical social understanding: please stop tearing away tiny bits of your skin so that unsightly blood floods from your beautiful, precious legs and leaves you looking like a child that nobody loves: other people don’t like to see blood on people and it makes them scared and alarmed, it’s going to stain your white summer school socks and by scratching your skin, you’re going to make everything so much worse and perpetuate the situation, and even perhaps your unrelenting nail-against-flesh action (nails that were earlier picking up snails from the garden and placing them on the wheeled garden kneeler, so they could go “driving in a car” [thanks Yo Gabba Gabba!]) is going to occur in a skin infection.
However, as you might be able to imagine, if my daughter is going to struggle understanding the basics of the two words “don’t scratch” in their basic, dictionary-definition state, my prosaic social diatribe will mean absolutely zilch to her.
She doesn’t care what you think of the blood streaming down her legs, she doesn’t understand the abstract consequence of what invisible [tiny, ugly – Yo Gabba Gabba!] germs might do to her body, stains are an inconvenience she is blissfully unaware of, she is fearless of almost everything, including blood, as blood is only an indicator of the finality of life force to those whom understand the workings of the human body – her ankles itch and she needs to scratch them – that’s all there is to it.
That is… autism.
There’s no grey area in her understanding of being alive – it’s all instant gratification, it’s all here and now, it’s survival and she is the centre of her own universe.
And, in my tired state, this leaves me at the perfect point to say (just as my daughter awakens crying from supposedly sound-sleep, found slumped reasonless at the top of the staircase, moments before I go to bed) that perhaps she’ll never know, but she has usurped me as the centre of my own universe.