The Issue

Years ago when I was starting my career in social work, I interviewed for a position in a continuing care center for the elderly. As the director showed me around the wing for those with dementia, she proudly informed me that, “We don’t let our residents have baby dolls or stuffed animals. We are age-appropriate”. “That’s odd”, I thought as I imagined seniors with Cabbage Patch dolls and teddy bears hidden under their beds until staff was gone for the day.

As a parent of a child with significant intellectual disability (ID) and autism spectrum disorder (ASD), I have heard this refrain too. And just as it confused me then, it confuses me now. Let me explain . . .

Early on we had such high hopes that all the therapies and treatments we had on board would mitigate the most challenging aspects of her disability. Many years and interventions later, she continues to have global deficits that a multitude of providers highlight in routine reassessments and check-ups. Her first speech therapist broke my heart when she told us that she was functioning at the level of a toddler and might not progress any further. As painful as that was to hear back then, it has turned out to be accurate in many respects. What she pointed out to us was the difference between her chronological and her developmental age.

The Dichotomy

Why is it that the people who remind us of our child’s deficits are often the same people who seem to push their being age-appropriate? Along with that, they insist on using “age-appropriate language”. For someone with a limited vocabulary, switching to unfamiliar words would be like me switching to Latin now and expecting you to understand what I’m saying. If the point of language is to understand and to be understood, doesn’t it make sense to use words that are known to the listener? While my child’s receptive language has grown, it is still quite limited and it takes intense repetition for her to make the connection.

I do understand that the concepts of dignity and independence may underlie the argument to be “age appropriate”. It can come across as condescending to “talk baby talk” or to treat someone as if they aren’t capable. But that is more a matter of one’s intent and often comes across in tone of voice, attitude and behavior. For kids, we encourage next steps to being as independent as possible. That makes sense to me.

However, the concepts of choice and freedom are also important to consider. Dragon Tales and Barney may not be age appropriate for a typically developing teenager, but for a teen with ID and ASD, it may be developmentally appropriate. Besides, that is her preference and her choice. I promise you that if we were to try and interest her in teenage fashion or music or movies, she would emphatically respond with “no thanks” by throwing things and seeking out what she enjoys.

The Disconnect

Perhaps the difficulty comes with the contrast in presentation between chronological and developmental age. As my daughter got older, it was unsettling to see her body develop into that of a teen/young adult while her brain didn’t keep pace. The image of an adult in a diaper or still being toilet trained is hard for a mind to grasp. It makes others feel uncomfortable. But not her.

Please keep in mind that this is one perspective, my perspective on my child. It most certainly does not fit every child with autism. But I have heard this from other parents too who wonder what the push is to try and make their child something they are not. Whether it’s being okay with a chewy (item designed for those with cravings to chew or for oral motor stimulation) or with flapping one’s hands, parents ask for understanding, acceptance and tolerance of the uniqueness of our children.