Changes in our children: Puberty and Autism
We all think about it and we quiver in fear - the word all au fait parents of autistic children fear: Puberty.
While that word holds any parent prisoner, we have to remember autistic children have a harder time dealing with and understanding changes in their world; changes to their bodies are no exception. Here’s my problem with it: every doctor I’ve talked to (with the exception of Seattle Children’s Hospital) has had nothing but a shocked gawk to offer me when asked what to do, like I should be covered in tar and feathered for even thinking of what to do when my son is smack dab in the middle of puberty.
The other thing that gets me: there is no training on how to handle puberty for us parents. There are no rules to follow or tips to be given centered on your child, like they do with everything else. Of course there are books you can buy and so forth. Don’t you think that there should be something more to offer us though? I suppose like everything else we just need more doctors that care. After all, even “typical” children are forced through classes covering puberty during school. You know, that class on a female’s period and the changes a male goes through when we’re in 4th or 5th grades Their world gets turned upside down and in turn so does their behavior (in a lot of cases). When will we pay more attention to our child’s journey into maturity, into becoming an adult—why isn’t this made a priority? For the new parents of autistic children that don’t understand, here’s a sample of puberty in my world.
As a child
On November XX, 2003 I gave birth to the most beautiful bundle of chaos that’s ever been introduced into my life, Mr. Zain Mikeal. He was the sweetest little boy with the largest capacity to love. He made me a mommy, I didn’t know this world that exists beyond myself until that day, until I looked into those eyes.
During infancy Zain exhibited the following:
-Stated seizing at birth and has continued through life
-Had severe gastrointestinal issues
-He hated to be held
-He’d scratch the middle of his forehead, violently, every day
-He had started beating his head on the walls and floors
By the time he hit toddler age he was becoming an even bigger challenge, also an even bigger joy. He could make a grown man cry or laugh depending on his mood.
At this age he started exhibiting these behaviors:
-He’d spin and spin and spin, never getting dizzy
-He’d run around flapping his arms with a cape on
-Never spoke a word or maintained eye contact through his early childhood but he also never let that hold him back
-He started pulling my hair out and eating it, not his hair, only mine
-If I fell asleep he’d empty our refrigerator and line all the food up throughout the house.
-Developed a TIC disorder and SPD
-Showed a reduced sense of pain
Of the things I chose to list there was always a doctor there to offer me coping mechanisms, advice, or solutions. Where is the nationwide advice for puberty, why doesn’t every doctor have information in office? Where is our “parental safety kit” here? Where’s our children’s life line? Where’s our help?
As a Pre-teen
All the training Zain’s given me through the last 11 years has in fact been to prepare me for his tween years. You see, one night I put my son to sleep and 2 hours later he woke up possessed. That is the only way to describe it. (Ok, so I am exaggerating, not by much though). He still exhibits some of the same behaviors he has his whole life, added too and heightened of course. He also exhibits a lot of the behaviors “typical” children his age exhibit.
A point of fear is that he’s a lot bigger now then he was back then and he has no awareness that this change has happened. Some days, in my house, it is fun--filled with play and love. Yes there are still issues on those days, in comparison though--even if he drops during a game and melts down those days are heaven. Then there are the other days.
On bad days Zain exhibits some or all of the following (including but not limited too):
-Severe, violent meltdowns and screaming episodes. I have numerous pictures of my blackened eyes. I have to keep him separated from his brother on these days
-Extremely horrible throat TICS
-He stims to the max
-Bites his nails off until they bleed
-He destroys our home and our things
-Cries at the drop of a dime
-Has bouts of self-injury
-Doesn’t sleep at all that night
-Pinches my arms and legs then wants to lay on me
What exactly is being overlooked?
Sometimes we find with autistic children the physical changes that happen to their bodies during maturity can be in conflict with where the child happens to fall in other aspects of life. Parents and their autistic children need tons of preparation. The parent has to learn how to deal with it and also how to identify with this child that they have raised, who in a lot of cases is cognitively quite a bit behind their physical age. We have to remember they’re different; autistic children need help coping with every aspect of it.
Things autistic children sometimes need help with concerning puberty:
- Transformations to their bodies
-Differences to where they are cognitively from their physical changes
-Changes in what society expects out of them as an older person
-Menstruation, how to deal with it, and what it is
-Changes in voice
-Growth of additional hair
-Differences in hygiene needs
Some resources for parents of Autistic Children:
-“Personal Hygiene—what does that have to do with me?” By: P. Crissy
-“Sex, Sexuality, and the Autism Spectrum” By: W. Lawson
-“Kylie’s Private World” or “Jason’s Private World” By: Life Support Productions
-“Asperger Syndrome and Sexuality” By: I. Henault
With our children medical science cannot overlook things, or shouldn’t. I’d love to find out why such a big topic is overlooked in so many states. We have this life altering stage in our children’s lives and for the most part everyone forgot to count it as notable. What could be more crucial? Puberty is not only a physical transformation it’s a mental transformation on many levels. It’s a modification in family dynamic, and sometimes an embarrassing adjustment. We need more resources centered on this topic, that is it, point blank. We need more attention, resources, studies, and help across the board, including the topic of puberty and preparation for puberty. We are always worried about what will happen when our children are grown, well, the first stage to that maturity starts now.
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- Source: Puberty and autism spectrum disorders