Autism Label: Advocacy for Neurodivergent Children

A mother’s account of the benefits of disclosing her son’s diagnosis and overcoming the fear of stigma often associated with autism.

On all accounts, when someone looks at my nine-year-old son, the first thought they have is not that he is neurodivergent. If they attempt a conversation with him long enough, they may notice he has difficulty maintaining eye contact. They may remark that his answers are short and to the point, with no extemporaneous giving of information. But those traits are not all that unique for a child who is on the quieter side. Yet, I know the reason behind his stoic responses and averted eyes.

While we aim to teach him the art of conversation and the beauty of eye contact, we certainly do not pressure him or make him feel less than for identifying with others in a less direct manner. We accept who he is and encourage behavior that recognizes the dignity in the person he is interacting with, while that person recognizes our son’s innate diversity.

Our visit to the dentist

Recently, we were visiting a new dentist for a bi-annual check-up. In the initial paperwork, there was a blank for any conditions the office should be made aware of. There was a time I would have left that space blank. These strangers did not need to know the intimate details of our family dynamic. I didn’t need to create space for someone to make a pre-judgment of my son. But, I knew I needed to fill it out, honestly, according to facts we have innately known since he was a toddler.

At our prior dentist, during a fairly routine filling of a cavity, the sustained open mouth and the appliances crowding his primary breathing space unnerved him to the point of incessant, desperate cries that he could not breathe. His eyes overran with tears, and his limbs flailed helplessly as I tried to steady him. The dentist said that he was not expecting the behavior. I, on the other hand, was not surprised. They didn’t know about his diagnosis. Looking back, it was clear I should have told them.

It is scary to share with strangers and sometimes even more with family when your child is neurodiverse. A lot of times, people look at you with confusion, perhaps even disdain, that you’d even find it necessary to label your child, who in all respects exists on the mild end of the spectrum.

But in that moment at the dentist, he needed extra care, increased understanding, and opportunity for accommodations to be made to acknowledge the diversity of his personal processes. By not advising the doctor and assistants of his complex neurological patterns, I failed to advocate for my son. I placed him in a position I knew would disrupt his internal equilibrium and hoped for the best.

As parents of neurodiverse/neurodivergent children, we are the primary advocates between them and those around them. We are responsible for developing tools for ourselves to bridge the distance between the neurotypical world our children will encounter and the neurodiverse world our children live in. The issue is complex, especially when our child could easily fly under the radar. We can find ourselves swinging back and forth on the pendulum of overstepping and overprotecting our children by not giving them safe opportunities to meet the world head-on.

We can just as easily deprive them of the chance to figure out how to physically, mentally, and emotionally respond to the input surrounding them. Conversely, we can choose to protect ourselves by not wanting to make a scene, not wanting to explain, again to an unreceptive audience, that our child is not like yours. That we aren’t asking for special treatment, just equitable considerations enabling our child (at the minimum) to feel at ease and at the apex to thrive.

The benefit of disclosing my son’s diagnosis

As we entered our new dentist’s office, my son was drawn to the vibrant, exaggerated, playful paintings of giraffes, sloths, and bears clad in oversized sunglasses and patterned bow ties. When the hygienist welcomed us to the back for x-rays, her manner was gentle and calming, prepping his emotions as much as his physical body for the procedure. She intentionally chose a mouthpiece fit for a much smaller child to make the uncomfortable picture-taking more palatable. He sailed through with ease. His nerves and demeanor remained calm and in order.

The time in the chair with the borrowed sunglasses began to elevate his heart rate. The paper bib tacked around his neck ushered in strong emotions. He hates paper products. This was something I had not thought of, but I took mental note that perhaps next time I could bring in our own cloth towel to protect his clothes from the cleaning.

The process continued, with each second his anxiety grew. The hygienist remained calm and soothing; she talked him through it. I held his hand and rubbed his leg in an attempt to keep him still. And you know what? He made it. I made it. The hygienist made it. In several minutes, the appointment was over. While his anxiety reared up, it did not overwhelm him. We all had been prepared.

My son’s autism is not a dirty little secret we need to keep hidden. It’s not a condition that should elicit pity or shame. I have to believe that throughout centuries, men and women, girls and boys have inhabited this earth with brains that function in diverse and beautiful manners. Today we simply possess the vocabulary and scientific prowess to verbalize how our children diversely occupy this predominantly neurotypical world.

By linking arms with a label, I can openly and adeptly advocate for my child and promote inclusion for neurodiversity. And next time I see that blank space on a form, I will fill it in honestly with no fear of judgment.