Dear Ellen: We have a preschooler who is otherwise perfect, normal and talks a lot at home, but is very shy with outside folks. Unlike other kids who are carefree and casual, she takes a long time to come out of her shell and play. She prefers playing with one friend, doesn’t like to be in a group.
She cannot stay at a place where people laugh or even talk loudly. She gets upset when someone in the kitchen puts on the pressure cooker. She has a fear of being around people clapping.
I became upset at her behavior at a recent event. I shouted at her but she still would not participate in the event. Now I’m afraid and worried by what appears to be happening to my child. She looks normal, unlike videos I have seen of kids who have the autism problem.
It’s been almost 20 years since someone first spoke of my son as possibly having autism. The internet was young, there was no social media, few books suitable for parents and other non-professionals, and autism was considered rare—one in 750 children thought to be affected, as compared to one in 68 today. There was little awareness of autism, good or bad, in the general population. Another decade passed before “autism awareness” became a phrase in common usage, and a campaign championed by many families affected by autism. Yet another decade has passed and now the pendulum has swung to the opposite side of the arc—our insatiable media assails us with endless content about autism, some of it legitimate and helpful, but much of it, frankly, hyperbolic fear-mongering positioned to draw in readers and viewers regardless of the veracity of the information. Sometimes it feels like we’re being conditioned to see autism everywhere, even where it doesn’t exist.
I don’t know if your child is suffering from autism. But her behavior has given you crystal-clear indication of what is causing her anxiety and probably physical pain:
She prefers the company of a single person over a group.
She takes a long time to acclimate to a group.
She avoids people who talk or laugh loudly.
She can’t tolerate the hissing, whistling and rattling of a pressure cooker.
She fears venues where people will be clapping.
You shouted at her in an attempt to change her behavior, and it didn’t work.
The common denominator in all these preferences and behaviors? Noise. The sounds of everyday life that you may not even notice are agonizing to her. She is very young, with little life experience, and is telling you in the only way she knows how–through her behavior.
So yes, your daughter is likely suffering, but whether from autism isn’t yet the question. It’s immediately evident that she suffers from hyper-acute hearing, which means she lives in an often-hostile sensory environment constantly bombarding her with painful stimuli. She understands this and does her best to avoid the stimuli, not always receiving the support she needs from the adults in her life. There’s surely some suffering associated with being misunderstood and misjudged despite her best efforts to communicate her needs in the manner most meaningful to her. I’m sure you realized immediately that shouting at a person who is noise-sensitive with the expectation that her behavior will change for the positive is unrealistic and counter-intuitive. If a child were sensitive to cold and averse to playing in the snow, we wouldn’t take away her coat and then expect her to enjoy sledding or a good snowball fight.
Hearing sensitivity can be a symptom of autism, but by itself doesn’t necessarily indicate it. Many things can cause hearing sensitivity, among them head or ear injury or damage, jaw joint problems, sensitivity to toxins or medications, viruses, nerve damage, seizures disorders, certain diseases such as Lyme, Tay-Sachs or Williams Syndrome, mineral deficiencies, depression, migraine headaches. Because you’ve referred to your daughter as otherwise normal, it would make sense to focus in on identifying the source of her hearing sensitivity and seeking treatment and therapy for that before jumping to the larger label of autism.
And whether or not your daughter has autism, I want to ask you to think about the language you’ve used to describe your child.
“Perfect” is a standard that no one can live up to. Autism or no, the world at large is already telling your child she’s not perfect. Better she develop the healthy perspective that every single person, without exception, has issues and aspects to improve upon, refine, discover, master. Every single person also has abilities, thoughts, feelings and dreams to contribute to community. Now is not too soon to let that thought begin to grow in her, as her success as a child, a teen and an adult will depend on being able to understand and describe how best she learns, communicates and socializes, and her ability to ask for the kind of help she needs.
“Normal” is a word whose definition is so broad and so amorphous as to be almost meaningless. Walk through any school, observe individual children, and you will see countless ways to be normal. Quiet or chatty, energetic or sedate, musical, athletic, literary, techie, adventurous, outdoorsy, and on and on. (It is normal for a person with hearing sensitivity to prefer small, quiet groups and gatherings to large, noisy ones. It is normal for a parent who observes unusual behavior in their child to be concerned and seek help and information.)
And if it turns out that your child does have autism, you may want to rethink describing it as a “problem.” The manner in which she processes language and experiences her environment is part of who she is, shapes her, as it does all of us. If it turns out she does have autism, I hope you’ll want to work with her in creating ways in which she can be more comfortable in her environment while honoring her unique thoughts, ideas, preferences, aspirations and fears. This is no less than we want for ourselves. It can and should transcend labels.
Perspective is everything. If your child does have autism, know this: More than any treatment or therapy, your perspective on your child’s autism will have the greatest impact on whether she thrives, is happy. Know this too: not all who live with autism suffer from it. My own son, now an adult with autism, professes that though autism has challenged him, he doesn’t believe in “suffering” and chooses every day to be optimistic. It’s the basis of the most popular meme in all of my work: The greatest tragedy that can befall a child with autism is to be surrounded by adults who think it’s a tragedy.
© 2015 Ellen Notbohm www.ellennotbohm.com