Delaying puberty in boys with LFA

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Smaller, less aggressive patients are easier to handle and care for, as well as being less of a personal threat to the caregiver. They also tend to consume less food, and require less medicine than larger patients. Thus, not only is caring for a child-sized adult more convenient for the caregiver, it is less expensive, as well.

Right... so I assume that *you* would volunteer to care for individuals who are a personal threat to you ? Of course you would !

As for the allegation that the caregivers are concerned about the quantity and the cost of food and medicines consumed by their loved one - this is so preposterous that it does not warrant being dignified with a response.

HisMom - what aspects of puberty are you concerned about? Perhaps if you list those, we could give responses accordingly.

I am concerned about sexual maturity, the (in)ability to deal with sexual needs in an appropriate manner, and the resulting aggression / self-aggression / frustration when those sexual desires are thwarted (due to a lack of a willing partner).

I'm going to weigh in on this and then I'll probably bow out. I think all the constructive discussion in this thread has run it's course.

Re the question of whether this move would make it easier for he caregiver. It's not an either/or question. If the caregiver is near the end of their resources, be it physical, emotional, or even financial, then anything that helps the caregiver automatically increases the quality of care for the person in question. It also lengthens the time she can provide care as she gets older and increases the likelihood that she can find a suitable situation to transition him into.

In an ideal world, everyone would get everything they need. This isn't an ideal world and sometimes decreasing their needs is the best way to ensure those needs are met.

That said, this point is clearly being brought up as a straw man. It's so easy to judge when you don't have to deal with something this difficult. There's no evidence that the OP is trying to make her life any "easier," if that word can ever be applied to her situation. The concern seems to be that there is a human being here who is never going to have an adult relationship and it's cruel to force him to crave everyday what he can never have. How mane HFA's do we see here in great (even suicidal) distress over this? We can tell them that they still have some small hope. Not here.

And now.....

Indeed. I have taken people into my home who would have otherwise been homeless. Many of them were no relation to me. Some needed regular visits to a remedial center. A few were bipolar or schizophrenic. Even those who were related to me had issues of chemical dependency and behaved irrationally at times.

Also, I am a military veteran. I have been in close contact with people who have sworn to kill people like me, and who have threatened to slit my own throat at the first opportunity. Yet I've also had to treat them with some degree of dignity and respect, even while they were flailing about and needed three people to restrain them, simply because it was the right thing to do.

So yes, I do know what it is like to care for adults that are personal threats to me.

Yet you responded, nonetheless.

[opinion=mine]

It seems to me that the only people who would have no concern for the cost of care would be those whose assets were so vast that the cost of care would be insignificant.

I acknowledge that you are concerned for your own safety. I also acknowledge that allowing sexual maturation in a person who would likely never find a willing partner might be some form of cruelty. Yet inducing one disability in a loved on top of another to make them easier to manage just seems somehow wrong to me.

[/opinion]

I also believe that all constructive discussion in this thread has run its course.

I'm outta here.

FWIW, I have been on both Depo Lupron and Depo Provera (I am female, biologically and otherwise) to treat a condition - neither of them is a lot of fun, but there are definitely worse drugs out there.

That said, sadly Depo Lupron was used off-label to "treat" autism by a couple of anti-vaxxer doctors who decided that autism was actually premature puberty (really?) Their medical license was later suspended. So I'd imagine that any conversation with a doctor on this issue will be complicated.

However, puberty is regularly suppressed in children who identify as transgender. http://news.health.com/2014/09/10/puber ... ens-study/ It is completely reversible, and therefore might be an option.

I am seeing literature that suggests puberty supression for young women on the spectrum to prevent menstruation...so I suppose the alternative is out there.

What I would say is this: although my son is HFA (or whatever. Hate functioning labels - wish we had better ways to describe these issues) I feared puberty - he was aggressive and had a history of violence. Surprisingly, puberty wound up having a calming effect on him to some degree - and another friend of mine with a somewhere-in-the-middle son had the same experience. I think you can make the choice to delay puberty up to "Tanner stage 2" which might give you a little breathing room to see how things go.

The only specific information I found suggested that puberty suppression might curb specific problem sexual behaviors (like public masturbation) but did not affect aggressive behavior http://www.researchgate.net/publication ... Management

Hang in there, HisMom - if your oldest is still in elementary school, I you have time to seek professional help and figure this out carefully. I understand how scary this must be for you, but I don't think it's a foregone conclusion that puberty will have a specific outcome: I think like all things autism it is individual to every person.

I also think that our kids, with the exception of the small subset that actually regress (as opposed to not developing along with their peers) in preschool, continue to develop their whole lives just like anyone else. That may or may not mean that your child will develop some kind of independence, but it's likely that he will gain some level of maturity beyond where he is right now.

(Evidently I have trouble doing what I say I'm going to do but anyway....). If it makes you feel any better, my son is doing much better now than he was when he first started puberty. He even tolerates face shaving now. I thought would NEVER happen. It was hell at first but since he's only 16 and it's already better, that's hope right?! Even masturbation isn't that hard to deal with anymore. His aggression is lower now too and he's not even medicated at the moment. So maybe it won't be do bad for you either...
Fingers crossed.

I'm not entitled to an opinion. I've never experienced LFA myself. I don't have an LFA kid. I'm terrified of puberty and my mild ADHD son. I am soooo not entitled to an opinion.

But I have one anyway.

I can understand why a person would wonder about it, even want to do it. Sexual frustration, aggression... Those things can be difficult to handle in a pubescent NT. Seriously. I remember a time when my cousin was so horny and so aggressive that his mother couldn't deal with him any more (I'm talking afraid of him, quit trying to deal with him and called in his father or other aggressive men in the community, because he was over my dad's head too, not just extreme aggravation but a real, actual problem)-- and this was a "normal" kid.

I still think I'd be MORE afraid of the possible consequence of messing with nature in such a profound way. That's something to start heavily researching NOW, NOW, NOW if you think it might turn out to be necessary. That's something you have to research for YEARS before you can make a decision.

I don't envy you that one. You've got my prayers.

There are also sex workers who are specialized in working with disabled people (in some countries).

...You say that he rushes/elopes into the street/dangerous situations . You seem to say thaBt he violently fights you . You express hope that his functioning level will improve . but want to both stop his sexual maturity - puberty - at least ttemporarily possible - . and . Aalso . freeze his physial growtg/strength at pre-puberty - nearly impossible . Wouldnt either or both destroy the " migrating upward " possibillity ?ould

You ARE entitled to an opinion! As long as you look at other opinions, some of which are borne out of experience. Don't let people shut you up!

I'm always entitled to an opinion. And I hope it's right. It's better if you have actual, empirical experience in what your opinion pertains to--but outside opinions could be just as valid.

Don't let anybody muzzle you because you have an opinion.

My opinion: I don't think anybody should mess with natural physiological processes. Maybe I'll change my mind upon reflection, and upon seeing other viewpoints--but as of now, this is my opinion.

I had a good friend whose brother was LFA (nonverbal, severely affected) when I was a child. He went through puberty. No ill effects.

And you say he is 8 now if I remember right...how do you know he wont be able to deal with sexual needs in an appropriate manner or that he'd never find a willing partner? And surely if that does prove to be the case there are more humane options than crippling your child with dangerous drugs to prevent puberty. As for the hard to control running off on his part you mention get him a child leash...much more humane than seeing the side effect of the puberty causing drugs that could prevent him being able to move on his own as a good way to keep him 'safe'.

As I say all this freak scientist treatment would do is ensure he never does progress and become any more functional...as well as causing other health issues as a side effect. Would you like it if your parents crippled you as a child to keep you from running around out of control and 'just in case' you didn't 'migrate up the spectrum'. I mean if you think he wouldn't realize you advocated this treatment you must think a lot less goes on in autistic minds than regular ones but us autistics can be pretty observant even at a young age.

I understand the concern, but I just cannot fathom how you still aren't seeing anything 'wrong' with stopping a physically healthy person go through normal body and hormone development, via a treatment with horrid side effects even.

Last edited by Sweetleaf on 05 Nov 2015, 2:03 pm, edited 1 time in total.

And to think he could be a cripple in a strange state of forever child...but still aging if you had decided to prevent puberty.

Many parents have irrational fears about their children's sexuality and the ways it might be expressed. This concern seems like an extreme version of that fear. One cannot know the future developmental course of any individual, therefore these concerns are about possible bad outcomes, not certainties or even probable outcomes.

To consider major medical intervention to alter development in order to protect against these imaginary problems seems unethical to me. It's hard to imagine any physician who answers to any kind of ethics committee agreeing to this.

It's hard to imagine the conversation a parent might have with their child, if at some point the child is able to ask questions about what happened.

I think some personal therapy about those fears might be a good place to begin, before research into castration or chemical castration, androgen deprivation therapy or the rest.

I am abandoning this thread because it is obvious that bashing me, questioning my ethics and suggesting counseling for me - especially by those who are neither parents nor have LFA kids - does not help me (or anyone else similarly situated).

I am entitled to my fears and my opinions, as mentioned by Kortie, but I will respectfully bow out of my thread now.

I thank everyone who responded with empathy and compassion. Your warmth and consideration is much appreciated.