Let’s begin with what autism is NOT!
My child is NOT:
The truth is there is a hell of a lot more wrong with ‘normal’ people and our society than there is my child. Don’t believe me? Just look at the headlines. Honestly, I hope I live long enough to see what a world run by Aspies looks like.
The truth is that..
They are just like you…but DIFFERENT!
I really like the saying that ‘Autism is not a system failure. It is a totally different operating system.’ I like to add that it is….running Linux in a Dos world.
But what makes them different? And how?
There are three primary characteristics or markers:
Social-interaction difficulties such as the classic not making eye contact (but be careful PanKwake only displays this one under stress), prefer to play alone, difficulty reading facial and body language, and my favorite emotional outbursts aka meltdowns.
Communication challenges including absent or delayed speech, literal interpretation, missing jokes and sarcasm (another one that with some work PanKwake REALly mastered), and of course one-sided monologue conversations on their favorite subjects. PanKwake is one of those that developed precociousness and a LARGE vocabulary. She can hear a word once in context and forever after be able to use it correctly.
Repetitive behaviors such as rocking back and forth, hand flapping or jumping/fidgeting. Restricted range of activities such as arranging and rearranging things. And intense preoccupation or obsessions…video games, Shopkins, you name it collections. My favorite with PanKwake was rubber bands. If we saw one laying in the street we had to stop and pick it up.
Along with these three primary diagnostic criteria for autism there are associated medical and developmental problems or co-morbidities such as:
- Gastro-intestinal problems
- Sleep dysfunction
- Sensory Processing Disorder.
Honestly these issues are just as problematic as those three diagnostic criteria. More so perhaps.
For PanKwake, the sleep dysfunction and epilepsy are cyclical. She has difficulty falling asleep…she always has. As a toddler, I remember having to lay down with her for an hour, sometimes two until she fell asleep. Eventually, I realized the more I told her to be quiet and lie still…the longer it took her to go to sleep.
When she was in school, she went to bed at seven at night or earlier, I still had trouble getting her up at seven the next morning and I got called to the school to pick her up at least once a week because she fell asleep in class. Now that she is older and homeschooled, I allow her to set her own bedtime…and yes that is sometimes 3 AM. Hell, sometimes she stays up ALL night, falls asleep at dawn and sleeps all day.
Judge me if you want…but this is EXACTLY how adults on the spectrum handle the sleep disturbance issue…and makes PanKwake happier and thus my life mostly easier. Mind you…this means I am up and down all night long myself so I am constantly sleep deprived myself.
The only REAL problem with this is that PanKwake is that one in four (I just saw someone said as high as 39%) of those on the spectrum who also have epilepsy. And her triggers have always been stress, sickness and you guessed it…SLEEP DEPRIVATION.
And here is where things get even more fun…the medications the doctors give her to treat the seizures…make her autistic behaviors worse! Those meltdowns…she can go from one a day to six or more. Violent ones too with her banging her head against the floor. All because of the meds. And we have tried close to half a dozen of them.
But the one that I think does not get nearly enough attention is…SENSORY PROCESSING. What is that you ask? It is that Linux operating system. It is how they take in and their brains process the world around them. Not just sight, sound, touch, taste and smell but movement as well. Here are a few ways that has affected us:
- Sight…bright sunlight makes her hyper so we keep the curtains closed most of the time. Fluorescent lightening is the worst. There was a time we could not take her in a store because it would make her have a meltdown every time. Of course this one is as so many things in this world are…complicated. You see fluorescent bulbs make noise that we cannot hear, but…
- Sounds...those on the spectrum can be more and conversely less sensitive to them. This is called auditory processing. PanKwake hates certain loud or high pitched sounds…vacuum cleaners, blow dryers and especially car alarms and police/fire/ambulance sirens. She will compensate by screaming and/or emulating the sound of the sirens. But call her name…and you would think she had a hearing problem. Because you see when you are constantly bombarded with sounds that other people just don’t hear, it can be difficult to focus on the things you should.
- Smell…she can smell stuff we can’t or before we can. We had to get off a bus once because the lady three rows back was eating an orange and it bothered her.
- Taste…yes, our kids can be the world’s pickiest eaters. And don’t try that…she’ll eat it or go hungry shit…she will starve first. But like those fluorescent lights this one is complicated because it is not just taste and smell but texture as well. PanKwake is getting much better…thanks to YouTube challenges to try new foods. There was a time when she only had three dozen or so approved foods and would only eat one thing at a time. I remember being at the hospital once when she was on a cream cheese kick. The nurses laughed at all the tubs of it that she went through, but that was literally ALL she would eat. So now I take great pride and joy in going to a local cafe, ordering a breakfast and watching her eat a bit of everything. It seems like a miracle to me.
- Touch…oh this is a hard one for me. My child has not hugged me in years. She won’t tolerate mine either. I remember when we were dog sitting a few months ago. We had taken the dog out for a walk and on the way home she slipped her hand in mine. I almost cried. But I was smart enough not to say anything to her…she would have taken it away immediately if I had. But those little moments I cherish.
- Now on to another sense that most of us do not even think about proprioception. It is what happens without you even thinking about it…the balancing act that allows you to move. Think about all that actually goes into you standing…shifting your weight without even realizing it. The unconscious pressure upon your joints. But for PanKwake this system does not always work properly…which is why she is constantly running, jumping, climbing, swinging and moving. Her proprioceptive system requires more stimulation than most people.
So now you know more about life on the autistic spectrum than you probably wanted to…but even that is only scratching the surface of our life…or the lives of the one in 87 (or more…MUCH MORE) of those living with autism.
Hopefully, what you have learned will make you stop and think the next time you are in the store and that ‘naughty’ child is having a ‘temper tantrum.’ She may not be naughty at all…just Auty. And that maybe a meltdown and not a tantrum. So before you judge…imagine what life must be like for that child…all those lights, smells, sounds, people and so much more. Next time, instead of judging…try a little compassion and a lot of…
Next Sunday I will share with you how you can actually help rather than harm in that situation.