Just The Facts: Autism Defined

Alex at a wedding, demonstrating, "The only thing cucumbers are good for." April 2010

 

Autism for us has become a part of life. You might say it's a good portion of the pie chart, but we are working on widdling that portion into manageable (swallowable) amounts. (Like, say, not the whole chart....) For those of you new to autism, maybe I can explain a little about it's origin and why it is so all consuming. Autism is a developmental disorder which is usually diagnosed in early childhood. It's neurological in nature and affects the brain in four major areas of functioning; language/communication, social skills, sensory systems and behavior. Autism creates misfires in the brain, motor control blips and disconnections. Because of this “faulty wiring” speech and body movement are impacted as well as social aptitude. The cause of autism remains a mystery, however, there seems to be a general consensus that it is caused partly by genetics and partly by environmental insults. One doctor explained it as our sons have a genetic predisposition to autism, but an environmental trigger kicked it into gear. Autism is a different way of thinking and learning. The center for disease control reported in 2007 that autism affect 1 in 150 children. Recently, however, it has been suggested those numbers are more like 1 in 88. Autism affects boys four to five times more than girls, and it affects them on various fronts, including biomedical, cognitive, social and sensory. The degree to which children are affected by autism varies from child to child. Some children never speak, some children never stop speaking. Each child on the spectrum has various strengths and weaknesses. I remember when Alex was diagnosed, our doctor used the metaphor of Alex's brain being like Swiss cheese (a lovely image really) some areas were dense and highly developed (like Alex's language skills or his memory...it's AMAZING) while other areas were the holes (his gross and fine motor skills, his social aptitude, his sensory issues).

Three little monkeys snuggled in a bed: Just before they bounced & broke their heads!
Yuma, Arizona. 2004

 They call it an autism spectrum, because every child diagnosed with the disorder falls in a different hugh. (Logan and Alex both have high functioning autism but autism manifests itself in very different ways). On one end of the spectrum children are often diagnosed with High Functioning Autism, Asperger Syndrome or PDDNOS -which stands for Pervasive Developmental Disorders Not Otherwise Specified (say that three times fast). PDDNOS means that the child has some of the markers of autism, but not enough for a clear diagnosis. Asperger syndrome (Alex's original diagnosis) is marked by individuals who are usually extremely intelligent, with good expressive language and not a lot of developmental delays early on in childhood. However, they are markedly impaired in their social skills, and also have weak perspective taking abilities. For example, Alex's perspective, he feels, should be everyone's perspective. He is a black and white thinker. Colors are just a figure of your imagination. We HATE skittles. On the other far end of the spectrum is Low Functioning Autism. This form of autism is the most severe, many have little or no language skills and many have some level of mental retardation.

Additionally, a lot of kids with autism have what is called "Comorbidity" this is where a child might have two or three diagnoses that reside together, children on the spectrum are at higher risk for another diagnosis; for example....ADHD and Autism. Seizure and Autism. Bipolar Disorder and Autism. Anxiety and Autism. Tourette's and Autism... oh the possibilities are limitless. It's like a double major! Or an extra value meal (Uhhh, I'll take autism, with a side of sensory integration disorder and a large depression...) It's like bundling. (Oh I could go on all day!) It takes a lot of testing and probing and observing to determine if Autism is the root cause of depression or anxiety or..... you name it, or if the disorder is a separate force to be reconciled. Alex has Autism, Sensory Integration Disorder, and Depression. Good, good times. Logan has Autism and Anxiety (I am reminded of sitting in a psychiatrist's office when the Dr. asked me, "Does Logan ever have panic attacks?" "No," I said, "He doesn't." Slowly, from the corner of my vision, I saw Logan's hand raise up. "Uh, yes I do." He said, his eyes wide and earnest. "Tell me about it Logan," the doctor prompted. "Well, my friend Josh hit me in the head.... and I panicked." Needless to say, he doesn't actually have a panic disorder diagnosis.)

Spencer & Logan: Love those dimples! April 2004

 So in helping individuals living with autism, you have to approach the disorder from every angle it presents itself: biomedically, socially, sensory, and communication. You have to look at the whole package, and how different parts of the package affect the whole child, and even bigger picture, affect the whole family, the whole community, the whole system, the whole world.We have been working, and learning and infusing our world with coping mechanisms, and tools, and routines and medicine and occupational therapy....and.....and....and...for years now, so we know, that while black and white does look classy, (especially on Audry Hepburn) after a while, it just becomes sterile and bleak. Whereas color, well, that's money. So we keep doing what we are doing, we measure our progress sometimes by millimeters... but the hope of color is what I want for my boys, so I've started leaving a path of skittles along the way, a sort of Hansel and Gretel trail...because, as you know, there is a rainbow of flavor waiting in every bite and I for one want my boys to savor the flavor(even if it's just the tinest lick before they spit it out: a rainbow of spit, a spectrum on the carpet, just waiting to be cleaned up).

Spencer (joining in the wedding fun) says, "Does it look like I have beady little eyes?" 2011