Wednesday, November 25, 2015

The Diagnosis

There it was in black and white. It wasn't a surprise; in fact, it was exactly what I'd been suspecting for years. Still, on paper it looked so official, so permanent, so undeniable. Autism spectrum disorder, level one. Before the diagnostic label changed, this would have been called Aspergers disorder. Level one is now used to signify a high level of functioning. The diagnosis specified an exclusion of verbal or cognitive delays. It's all very clinical. Except it's not. It's my child.

He's the same child he was before the diagnosis, but I'm not the same parent. As one friend put it, I'm now part of a club that no one wanted to join, but if you have to join the "autism mom's group" you will find a lot of support. We came to this diagnosis after a seven hour two day psychological evaluation. I know a lot of parents with children on the spectrum can pinpoint an age where their child changed or regressed, a time when they began to notice something was a little different. I can pinpoint this time to when my child turned three. I used to joke that he bypassed the terrible twos and became totally different at three. Except it really wasn't a joke. Of course, the question even science cannot yet answer isn't why but what? What causes autism? Is it linked to the mysterious week long high fever my son contracted two weeks before his third birthday? Is it genetic, biological, or both? Is there a causal relationship between autism and vaccines or diet? I can't answer any of these questions, and if I have learned one thing through curve balls in life it's to make peace with the not knowing. It's human to want answers. When we know why something happened, it is easier to wrap our heads around it. In reality not everything has a discernible reason.

I will most likely never know the why of my son's autism, but I know the what. I know what to call the bundle of symptoms: the non stop talk about obsessive interests, the difficulty reading social cues, the separation anxiety, the sensitivity to smells and noises, the rigidity and the outbursts. More importantly, I also know the who. The part that can't be summed up on paper. The boy who insisted on using his own money to buy his brother a birthday present. The boy who is incredibly smart, who can tell you all about garbage and recycling, and more recently, Kidz Bop and Taylor Swift. The boy who is fiercely loyal to his friends and does not hesitate to stand up for a classmate being picked on. The boy who asks if we can learn about undertows in school this week. The boy who thinks more than the average person and also has an impressive degree of self awareness. Sometimes when he is still awake two or three hours after being tucked in he will tell me, "Mom, sometimes my mind gets the best of me. It's like a computer with pictures in it and the pictures keep coming up on the screen." I am glad that he can explain this. The who I knew before the diagnosis.

So what does a "label" mean, exactly? The very use of labels is controversial. Despite efforts to raise awareness, there still exists a pervasive belief that autism is nothing but the latest fad label. Awareness of the spectrum is limited. Some people have an image of autism as a kid that can't communicate at all. Some have an image of a quirky genius. Autism is both of these things and neither of these things; the autism spectrum is everything in between. The saying goes, "If you've met one person with autism then you've met one person with autism", Why the label? The diagnosis is a tool. The diagnosis tells me not only the what but the where and the how. I know where to turn for support, resources, and the therapies that will help my child and us as his parents manage his struggles and build upon his strengths. I know how to understand his beautiful mind a little better and I know how to meet his needs. Not entirely, of course. Not perfectly. But better.

We have decided to continue homeschooling, gradually increasing the hours he spends at the school he attends for homeschooled children. The teacher and administrators have already been wonderfully accommodating, intervening promptly and effectively when he was having difficulties with a classmate, allowing him to choose not to participate in recess, and allowing him to participate in the chapel with fewer children when the all school chapel was too loud and overwhelming for him. The latter two accommodations were made without me asking. The small classroom of only nine kids and the small lunchroom allow him to be more comfortable but still challenges him to function socially and within a group. He is also in an environment where his individuality and needs are respected, which is the best way for him to learn. He will also begin participation in a social skills group and take classes at the local public school. His IQ tested in the 94th percentile, so we are hoping to get him in some advanced classes that meet his need to be challenged and his comfort level. Finally, we are working on visual schedules to help him with transitions. He does best when he knows what to expect and has some control over his environment.

When he is old enough to understand we will tell him about his diagnosis, because it is nothing to hide. We never want him to feel ashamed. It will be up to us to explain what it means. He has difficulties that many people don't experience, but he also has a unique way of seeing the world. He can understand things that others cannot. He feels more deeply and thinks more intently, which means his lows may be lower but his highs will also be higher. When he's old enough I plan to have him volunteer with me one Saturday a month when I work with kids on the spectrum. I believe that God calls us to use not only our gifts but also our struggles to help others. I want him to use his unique mind to understand and reach out to other kids who might be struggling, or might not seem to fit in.

 That will be his lesson. Mine is to always trust my parenting instincts. When my son started kindergarten at five I saw him sitting in the lunchroom with his hands tightly over his ears and tears rolling down his face while kids talked over and around him. I saw the teacher carry him into the classroom kicking and screaming. I listened when he begged me not to make him keep going to that school. I listened to my instinct and to my child, not to the "experts" who told me, "Oh, Mrs. Clark, kids do this. He's fine. He'll adjust. Maybe you just need to learn to let go?" Or maybe my child is on the spectrum and cannot handle a noisy lunchroom or a crowded classroom or a long school day. I tried to tell myself it was just a phase, he was just young, things would work themselves out, but I didn't believe it. As a parent, you know your child. If you know in your gut something is going on, don't let the word "just" enter your vocabulary. You are the first expert and only advocate for your child. Trust yourself and trust your child.

 If you are a fellow autism parent, I can't tell you why your child has autism, but I can tell you why your child has you: because you are the best for them. You are the perfect person to love them, struggle with them, fight for them, guide them, and sometimes just fumble blindly through the dark with them. If autism is not a part of your life, I simply ask you to understand that there is no single picture of autism. That child in the grocery store who is too old to be acting like that might be on the spectrum. So might the cashier. By the same token, a child on the spectrum may appear to be function no differently than any other child, but this doesn't mean the diagnosis is any less legitimate. This same child may go home tonight and refuse to sleep until all of his money is counted and he had read no more or less than three chapters in his book. If you've met my son you've met an intelligent, empathetic, loyal, intuitive boy who will talk your ear off about Taylor Swift and Kidz Bop. You've also met one person with autism.


  1. Another FABULOUS blog... like always! After 8 years teaching students with autism and Asbergers, I certainly don't need to tell you what you already know... he is SO MUCH MORE than his diagnosis AND you are the exact mom meant for him! God Bless all of you :)