Published in Children’s Voice, Volume 29, Number 1

“Puberty has Brought so Many Changes! Do Kids with Autism Understand it at Age 12?”

by Ellen Notbohm

A parent wrote to me as her son was finishing his first year of middle school. To her great dismay, the Individualized Education Program (IEP) goals put forth by the school team were “from the first section to the last, completely inappropriate and almost irrelevant to his recent developmental changes.”

The academic problems, she felt, could be easily pinpointed and carried forward from sixth to seventh grade. But there were other issues both she and the school team felt unsure about as they attempted to define specific needs in order to make the new IEP applicable and measurable.

“Moreover,” the mother continued, “we never anticipated that puberty would bring about so many changes! We prepared ourselves for the academic differences between elementary and middle school, but we’re shocked at how much our little fifth grader has changed in less than a year.

“We’re also dealing with the question of whether he’s mature enough to discuss his autism. At 12, we haven’t talked to him about this, and he’s never asked.We ache at the thought of his having to deal with the misconceptions and baggage that come with the label. Do kids with autism know all about it at age 12?”

This parent’s first question has the easy answer: an IEP is never set in stone. Parents have the right to reconvene the IEP team and make changes to the document at any time they have concerns. Educators know that children progress and change at different rates, accelerating and stalling in fits and starts as they go along, and that’s why the IEP has to be a fluid process. Teachers and parents working together with the child’s bests interests front and center can only prepare the best possible document they can in the moment, with the understanding that either party will want to revisit it as soon as it begins to feel outdated or otherwise not pertinent. No parent or teacher, I assured this mother, can be completely sure about what lies ahead. It’s alright to be uncertain, make a cultivated and coordinated team proposal with the information available now, and do it knowing that special education law protects the parent with the provision that the school cannot refuse a parent’s request to reconvene the IEP team.

I also told this mom“I hear you” on the rockiness of moving to seventh grade. For us, seventh grade was much more of a boat-rocker than was sixth grade. One of our teachers put it this way: Most parents and kids assume that the transition from fifth grade to sixth—elementary school to middle school— will be a big transition. And it is. But the transition to seventh grade can be even more significant—and it gets relatively little attention. Our teacher viewed seventh grade as the point at which the teachers really stop “nurturing” (she even used the word “coddling”) students and lay on the work and the expectations for independence. At the same time, the kids are hitting their teens, with all the bodily changes of puberty, mood swings, peer pressure, and the beginnings of wanting to break away from their parents. And if a child must also layer on a growing awareness of a difference or disability, this can indeed be a very volatile brew.

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Ellen Notbohm is an internationally known author whose work has informed, delighted, and guided readers in more than twenty languages. Her perennial bestselling book, Ten Things Every Child with Autism Wishes You Knew, began as an article in Childrenʼs Voice magazine in 2004 and was published in an updated third edition—in English and Spanish—in June 2019 to commemorate its 15th anniversary.