What the Diagnosis of My Son on the Autism Spectrum Means to Me

There it was in black and white. It wasn’t a surprise — in fact, it was 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 Asperger’s syndrome. 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. We came to this diagnosis after a seven hour and two day psychological evaluation. I know some parents with children on the spectrum who 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 3. I used to joke he bypassed the terrible 2s and became totally different at 3. Except it really wasn’t a joke. Of course, the question even science cannot yet answer is, what causes autism? Is it linked to the mysterious week long high fever my son contracted two weeks before his 3rd 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 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 what to call the traits: 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 overwhelm. More importantly, I also know my son, who 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 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 he can explain this. This is the same boy 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 who can’t communicate at all. Some have an image of a “quirky” genius. Autism can be 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 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.

As for me, I learned to always trust my parenting instincts. When my son started kindergarten at 5 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 when he was upset. 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 parent of a child on the autism spectrum, 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 through the dark with them.

If autism is not a part of your life, I simply ask you to understand there is no single picture of autism. The child in the grocery store who seems too old to be acting a certain way might be on the spectrum. So might the cashier. By the same token, a child on the spectrum may appear to be no different 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, empathic, loyal, intuitive boy who will talk your ear off about Taylor Swift and Kidz Bop. You’ve also met only one person with autism.

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Thinkstock image by supersizer