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Changes in our children: Puberty and Autism

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
-Didn’t sleep
-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
-Never slept
-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?

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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
-He whines!
-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
-Mood changes
-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

In Conclusion
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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Omg when I saw this, just Autism and Puberty in my email just a moment ago, I had gotten chills immediately! And get to it fast enough! My son, Aiden is 10 and I have known something just different about him as a baby and of course so on as he became a toddler I knew something yet really nothing? Besides the fact of just simply being a mother, his mother?! He was just different, yet nothing but the best baby and toddler I could not have been more in love with this precious child from God! Of course, over time, on and on. I knew for sure he was unique, and sometimes the more he grew into a little above toddler ages, I couldn't deny it, but never really quite even knew who are even what to tell anyone? Just things in him I had never experienced as a mom, also all my childhood and up had been around and loving children so much! But didn't quite know anything, and really didn't stress it much to be honest! He was my Different, unexplainable, Special, and Unique Child! So it just was, and I adapted to his differences as they had come to him and I. Well of course he would be finally Diagnosed at the age of almost 5 and of corse, I not knowing anything really about Autism, but of hearing the word in my life a few times? Things became do much more obvious and I had to of course totally began to educate myself of this disability learned so much with his Doctors and all I han learned! Helped me out with him greatly! Yes we still had so many obstacles some worse than others! But I just prided myself on all I could do for him to figure him and each situation to the best I could! But then, about the age of I guess 7, 8 then 9! My and his world just turned a total 360! And I was just distraught! So now I kinda just figured it had to be puberty and I didn't and still I haven't a clue what to do for and with him except whatever came and worked at the time and still now?! I'm so lost, and so is he! And it kills me as a mom to see these things we go through and what to do?
my son has Asperger's diagnosed at age 5. Christian is going through similar changes. He is almost 10 and has started with mood changes amongst other things, Over the past few months he has started screaming and yelling at me for telling him to do simple tasks such as coming to dinner or washing his hands. Meltdowns that with stress relief techniques had become a rarity we also learned how to spot early signs and do what we could to prevent them. He has had two just this week alone. I'm at a loss as to what to do. If you have any advice I welcome it please