Autism a 'spectrum disorder.' To me, this indicates a many-faceted and layered rainbow of abilities and challenges given to unique individuals. Unfortunately, the diagnostic critera make it look more like a sliding scale. This is where I start to grumble at the term "functioning."
My son has a High-Functioning Autism diagnosis, formerly Asperger's Syndrome. He is incredibly smart, hyper verbal, and gifted in too many ways to list here.
However.
He cannot dress, bathe, or use the toilet without prompting, redirection, and most times, assistance. He forgets to drink anything if it's not brought to him with the amount needed to be drunk marked on the side of his water bottle. He will ignore or not notice the need to move his bowels to the point, we've landed in the ER twice fearing a hernia or appendix rupture, only to find he was so severely constipated, the pain rendered him immobile. He's currently unable to go into a noisy restaurant without earplugs or spend more than a couple of minutes in a store with harsh fluorescent lighting without his sunglasses (even with them, stores are touch and go). He stims uncontrollably when in uncomfortable or exciting situations, his body desperately trying to soothe his dysregulated brain. His social anxiety keeps him from typical childhood occupations like extracurricular activities, clubs, parks, and birthday parties. He tries and tries, but it always proves too much and leaves him feeling defeated because we quit or had to leave early... again... while the other kids he desperately wants to be with continue to run and play, oblivious of his struggle and the effort it took him just to show up. He wants to spend the night with his grandparents, but can't stay once he gets there because he needs his own bed and routine to calm his anxiety enough to sleep. He does not communicate feelings, emotions, needs, or wants in developmentally appropriate ways. He hits, kicks, karate chops, threatens, and screams in order to make his needs and wants known. At this point, his preschool-aged sister functions more independently than he is able.
I have every reason to hope that with the right supports in place from now until the transition to adulthood is made, our son will be able to live and function independently. But right now, I'm still prompting and using visual schedules to remind him to put his shoes on the right feet and reading social stories to explain why hitting, screaming, kicking, and spitting at friends and adults (a phase of development NT kids his age left behind about three or four years ago) is not a way to solve problems.
I know the term low-functioning in reference to the autism spectrum is usually used for persons whose symptoms severely inhibit communication, have a low IQ, and/or whose symptoms interfere severely with their prospective ability to be independent. According to diagnostic criteria, my son is not low-functioning. According to his daily life, he's not high-functioning either. He's in survival mode. He's "getting-by-functioning" a majority of the time (though, of course, we have better and worse days). We're doing everything we can to change this and encourage and support his slowly progressing independence. We don't want him to simply function. We are not raising a robot; we are raising a human being. We want him to be a human being who thrives. He'll get there. We know he will, because we will never give up on him. We'll even let him live in the basement (assuming we ever have a basement). Because that's what parents do. High-functioning or not, neurotypical or autistic, grown-up or child, everyone needs a support system.
My son with Asperger's is not high-functioning today. One day he will be. One day, I will stand and look up into the face of a high-functioning, handsome, grown up man with Asperger's Syndrome who can accomplish anything he desires through hard work and effort. He will thrive. And guess what? He will still need our love and support. We'll be there to give it.
No comments:
Post a Comment