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Autism & Puberty: How It’s Affecting My Son…

Autism & Puberty:  How It's Affecting My Son...

(originally written & published on January 15, 2016)

A few weeks back I wrote on my Autism Daddy Facebook page that I had writer’s block and needed suggestions for topics for future blog posts.

And one of the topics that came up again and again and again was… PUBERTY…

Susan wrote: “Puberty! How do I prepare for it? What do I say? How do I help him navigate it?” 

Allie wrote:  “Someone commented puberty. I have to agree with that one. Its something that needs attention and help. Rough for any kid, but especially when we cant explain and they are so frustrated. Nobody really talks about it.” 

Alisa wrote:  “I would love to see a post on how you plan to tackle puberty. Even though my son is only 5, I’m curious as to how I will handle the changes”

And so, my popular demand, this is my post on puberty, but it’s probably not the post many of you were expecting and probably not the puberty post that some of you were hoping for.

Yes, the king is 12 1/2 years old and yes he is in puberty.  He’s probably got the body of a 14-15 year old.  However, up to know, so far we have not seen an increase in aggressive behavior or any of the other problematic things you hear about when autistic kids enter puberty.

However, my son entering puberty came with a different set of questions, wrong paths, and challenges… almost all unrelated to his autism.

The fact is he started going through puberty early.  He was going for some xrays and bone tests for another unrelated issue when he was diagnosed with “precocious puberty”.  This was when he was about 10 and a half years old.  They did a “bone age” scan / test on him (which we had to knock him out for) and said that he had the body of a 14 year old.   There are 5 stages of puberty and he was already in stage 3.  I don’t want to get graphic, (let’s just say that there was A LOT going on, all over his body… (and there still is…)

You can read all the stages of puberty in boys here

And there were some doctors that were sending us for MRI’s to make sure that nothing neurological was causing his advanced puberty.  So after an MRI (that we had to knock him out for) showed nothing neurological was causing his advanced puberty we said “enough, we are not going to worry about this anymore”

Some doctors were suggesting we give him meds to slow down the rate of his puberty.  We said “Why do people do that?  What’s the worst that can happen if kids go thru puberty early.”

Here’s the worst that can happen:

Possible complications of precocious puberty include:

Short height. Children with precocious puberty may grow quickly at first and be tall, compared with their peers. But, because their bones mature more quickly than normal, they often stop growing earlier than usual. This can cause them to be shorter than average as adults. Early treatment of precocious puberty, especially when it occurs in very young children, can help them grow taller than they would without treatment. 

Social and emotional problems. Girls and boys who begin puberty long before their peers may be extremely self-conscious about the changes occurring in their bodies. This may affect self-esteem and increase the risk of depression or substance abuse.

Our pediatrician, who we love, was the one who told us that he might be short if we did nothing about the precocious puberty, and then he whispered to us “maybe your guy being short would be better for you guys in the long run”  and we took no offense, and knew exactly what he meant.

And the social & emotional issues?  That totally doesn’t apply to our son.  Self conscious of his body?!  I don’t think so!

So we figured, “if he’s not raging and being aggressive while going thru puberty why try to slow it down…  let him get thru it quicker and maybe be a little shorter…”

Plus we had another fabulous reason for him to get thru puberty quicker!

For kids with epilepsy puberty can mess with their seizures.  And we are pretty sure that it did for the king.

He had the VNS Surgery for his epilepsy in August of 2013 when he was 10.  And for the first 9 months we saw a drastic reduction in the amount of seizure activity that he had.

Then as he entered puberty the seizures crept back up.  They are not back to where they were before the surgery, but they are close.  And the hope with the VNS Surgery was to get him off some of the seizure meds.

But he’s still on pretty much the same amount of seizure meds as pre-surgery.  Is puberty entirely to blame?  Who the F knows?  Nobody knows.  So the quicker he gets thru puberty and the quicker he gets to what his adult body will be like for the long haul of his life, the quicker we can figure out if the VNS device is truly helping and the quicker we can figure out what seizure meds work and what ones dont…

So all of this to say that we haven’t seen any signs of increased aggression in our son since puberty started like many other autistic kids have.  I mean he has his agressive moments, sure, but I dont think they can be blamed on puberty.  Heck the most agressive time of his life, what I call his “summer of rage” happened way before puberty when he was only 8 years old.

So no increased aggression since starting puberty thankfully.  Actually he is probably more mellow now.  And more engaged.  And more present.  And more “there” since starting puberty.

The only other thing that we deal with, that I’ve written about before is that he sleeps a LOT.  Sometimes he’s only awake for 9-10 hours per day.  I’ve heard that boys need a lot more sleep when they are going thru puberty, but I’m not sure if sleeping 12 hours a night and then still having two 60 minute naps per day is what we were expecting.  Maybe it’s partially due to puberty, partially due to seizure meds making him sleepy, partially due to him being tired from seizures that he has that we didn’t see…  We just don’t know why he sleeps so much lately…

Sometimes that not knowing freaks us out…but we are so tired of chasing after another diagnosis.  The docs are saying he’s healthy (minus his seizures), he looks good, he’s eating well, his behaviors are good, for the 9-10 hours a day that he is awake he is a pleasure to be around…

So we are assuming that this is just a phase…

And wifey and I are watching lots of movies while he’s sleeping and trying to make the best of it, and remembering the times when he didn’t sleep at all…

Anyway, I’m getting way off track.

So I’m going to end it here.  You asked for my autism and puberty post.  And you got my autism, epilepsy, precocious puberty post.

Hope some of you got something out of this… maybe not any helpful advice, but just another window into our wacky world!


Written by

Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).

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8 People Replies to “Autism & Puberty: How It’s Affecting My Son…”

  1. Brian keever

    I really need help my son is 4 years old with autism. In the last 4 weeks or so he has had fits where hitting has been a issue. I desperately need some advice on how to discipline or teach him not to hit. I’m afraid if I do not get the right help to combat this violent rage side that came outta the blue that it will grow as a problem throughout his adolesence.

  2. Lydia de Leon

    Thanks for sharing. This adds on my confirmation about autism on puberty stage. My son with autism is now 18 years old and going to 19 this August. We also got into lot of worries during his puberty stage. I talked to other parents who has older child with autism and they had a lot of different stories about their child during puberty stage. But the good news is… it is just a stage of their life like other normal children on this stage. They will out grow it eventually.

  3. Speaking from the aspergers end of the spectrum, the hormones plus not understanding socially acceptable behavior has caused a few issues. Mine is 15 years old right now and 6'3" . . . he's like Sasquatch ~ gentle and misunderstood, but does have momentary hormone rages easily quelled by sitting in his room (he has to sit NEXT to me to be happy/secure) . . . .

  4. And here I thought people asked for HIS TAKE on autism and puberty. *rolls eyes*

  5. Anonymous

    AD my dear…please remember your King was already on behavior meds before puberty….this may be why the hormones didn't cause aggression…my son was on no meds period….he didn't need them…then he had his first seizure at 11….btw my nuero says many many autistic kids severe get their first seizure with puberty and all the changes in their brains with hormones…ok…so my son was only on a seizure med when puberty hit…..he got very hulk like…he was moving furniture,hitting and laughing….it was like he couldn't believe his new found strength? It was a real bitch! I was forced to put him on something! Your son was already on something! Remember! Lol bye!

  6. Hearty thanks for sharing. Helped understand my gifted child's changes in his growth. Thanks so much.