Sunday, July 28, 2013

Severe #Autism, Puberty and the conversations that need to be happening

Here lately I have been struggling with Beans, and his increasingly aggressive behavior. I don't care as much about about the aggression, or the destruction of my home as much as I care that he seems quite unhappy.  I have spoken about it some on my Inner Aspie page, and more on my personal FB page.  I tend to keep quite a lot of these struggles to myself, as I know the inevitable wall of advice is bound to come along with anything I post.  I don't mind advice, and sometimes welcome it, but in the case of Beans it seems he has a different kind of autism than almost anyone else I have ever met, online, or off.  Autism Daddy is probably one of the very few examples I have found that somewhat matched up with my Beans. Though, his son, and ideas on dealing with things differ from mine it is a close approximation.

Last year, for Christmas one of Beans paras took a bunch of photos of his classroom, and put them on a special slideshow/video dvd for the parents.  Beans is in a classroom with other kids who are severely affected by autism, as well. He is by far the most delayed. I don't know that I noticed as much until popping that dvd in. I watched the other 2 kids in his class participate in activities while Beans just ran around in the background. Don't get me wrong, the school (usually) is very good at including him in every activity they can. The thing is, he doesn't have the skills to be involved in most of what the rest are doing. In P.E. the other 2 try to mimic what the rest of the 3rd grade class is doing, my son is running around playing tickles with the para. He will play tickles and peek-a-boo all day long. It isn't wrong, and it is engaging socially at his level of ability. I don't have an issue with it, but he is quite delayed in development, but yet his body is growing. His mind is beginning to get flooded with the hormones of adolescence, which delayed or not makes anyone moody, and obstinate.
He is still perfectly content to play with his baby toys. I think this is in part because sensory wise this is where he is. He loves the crinkle books, and the light up mobiles. I also think that he is limited somewhat in his ability to process the actions to do more complex tasks, like use the computer, or play with legos, though most of those things he shows no interest in doing anyway.  He wanders through the house emptying every shelf, and drawer looking for fun things to tap on (his stim of choice) or eat due to pica.  For this reason I have lots of gates and other measures to keep him contained. I feel bad about that, but if I didn't do it he would be very unsafe.  I would love to allow him to be in rooms that I go in and out of, like the kitchen or laundry room, for example, but if I let him in there he never wants to leave, as well as he wants to dig through everything in that room.  Enter in the new behavior he is having. If he even thinks that I don't want him to do something, he totally wants to do it. If he gets past gates, and people, and slips outside in the pouring rain he will climb on the trampoline where you can't reach him easily, and refuse to come in. I will be stuck out in the rain until he decides he is ready to come in. This is actually pretty typical behavior for an almost 10 yo.  He is letting me know he owns his body, and he is asserting his right to do what he wants.  Totally normal, even if the way it is being manifested isn't so much. However, much of the time the things he wants to do is off limits for a reason. I definitely  never ever sit around trying to find the easiest way of dealing with him. I try to find the best way in which he can be safe, even if it means more work for me. My job is to care for him, and make sacrifices for him, not the other way around. And, let me tell you a huge chuck of my time is waiting him out until he wants to move from places, or things, even if it's in the pouring rain, or supper is burning.

His meltdowns have increased to the point that I feel meds may be needed.  The slightest hint at frustration and his mind just cannot process it. It turns into raging at the drop of a hat. I have tried all else that I can think of, which is a lot considering how much I know about autism, and positive behavior supports.  He has become aware that there are things he wants to do, rather than just being completely passive. He has plans, and he can't tolerate those plans being impeded in any way, even if those plans are not safe in any kind of way, or even feasible.  Sometimes, he wants to eat junk food, and go swimming all day. That can't be an all the time activity, but I can tell from how he is behaving (he has very little expressive, or receptive communication at all, but behavior is communication) what he wants. Just recently he has begun to grab me by the hand to lead me to things, or push me around to what he wants. This was an exciting new thing, but quickly lead to realize how frustrated he can get when the desired activity cannot be one in which I can allow. 

Aggression is my concern now. The slightest frustration leads him to a rage filled fit that I am not big enough to contain. He is outgrowing me. As soon as he gets even a little upset, he starts bashing his head into everything near him, and punching everything. He has a permanent (it seems) bruise on this nose and forehead from this. He hits himself, and breaks everything within reach. This is particularly embarrassing at the store. He can take an entire aisle out in seconds. Anyone who intervenes gets beat up. He is in constant whirlwind of motion. Always looking for things to get into. I have poison control stickers in my kitchen for the times he gets past my gates, and locks. This happens as he learns. He isn't much of a climber, yet, but he is learning. He recently learned that he can push end tables, and chairs around to climb on to reach shelves.

In search for answers, I googled several different terms about severe autism, intellectual disability, and puberty. I could not find many answers on most of those searches. One of them, just a plain search for 'severe autism' brought me to tears.  On page one, the second one down, there is a video of a man literally inducing a meltdown in his son as he speaks about his child as if his child cannot hear him. I am not going to share it, because it pisses me the f*ck off. He doesn't need more views. He needs something I am not going to say here, because I don't want you to think I am a violent person. I cannot understand why in the world you would treat your child that way, and why other people would think that it is okay.

Worse than that, underneath where it has other popular suggestions there is the obviously very popular search phrase 'severe autism life expectancy' . Seriously. Does that creep anyone else out? We need more education, and more help for autistics like Beans and their families. That is why I am making this blog entry. There are a lot of places to get support for someone like Bubby. I have met very few people with kids like Beans.  I know they're out there. I have a feeling that they shut down from hearing all of the dismissals from others that think/say phrases like:

"Why  don't you try _____. Worked for my son."- This one usually involves about a ton of skills my son hasn't even begun to master yet, and possibly never will. But if I say that, I get.....

"I think you're being too negative." Yes, if I try to realistically explain that my son cannot use a pencil, understand how to use a computer mouse, or follow almost any verbal instructions, ect... I get....

"Presume competence" Now, I would never do what I just detailed to you above, which is assume my son can't tell that I am putting him down in front of everyone like he was some kind of science experiment. However, being realistic about where he is, and what he can do is not presuming he is incompetent. It is meeting him where he is at. But if I say that I get,

"You need more support/therapy/to work with him more" Yes, because if my child is more disabled than some people think he should be, it means that somewhere someone is failing him. If I try to explain that I let him be who he is without pushing him into being something that I want, no matter how unatrural it is for him I get...

"You're giving up. Not trying hard enough/ bad mother" Now we really have come full circle.  Judgment is rendered on my abilities, and I suspect this in part of why I am finding it difficult to find others in the same boat. I think other parents (especially moms) get their feelings hurt by these sorts of people way faster than me.  Sometimes, it hurts my feelings when I hear these things, and it always frustrates me, but aspie me doesn't care enough about what others think of me enough to influence me into silence. Logically, I know that I am not perfect, but I am honest enough with myself  to know that I am doing a pretty decent job with all of my kids.  I need to help my son, and I can't let my emotions get in the way of doing that, so I don't.

So, this is in part my feeble attempt to putting something out there about severe autism, combined with a cognitive delay going into puberty.  I don't have the answers, but I am on a long journey of finding them. One in which I will not give up. I hope that another parent might find these words and be comforted,. even if nothing else to know they're aren't alone. Stay tuned for more if you'd like, and follow me on Inner Aspie, or Here for Twitter, or even email me at the address below if you have anything you'd like to say privately. I always answer emails, even if it takes me a couple wks! I want to facilitate the connection between us parents with severely autistic children, and have these conversations that seem too few and far between.

24 comments:

  1. Oh honey, count me in that category as well. I will say that meds can be a blessing. Find yourself a good psychiatrist (and this can be a trial and error thing) that is willing to listen to all your concerns. Add or take away one thing at a time and be patient. We only rarely hit that "sweet spot" where Alan's behaviors are mostly manageable but most days he's a pretty happy camper. He is also well below his "peers" in a self-contained classroom and mostly non-verbal but he is loads better in most ways at almost 15 than he was at 10. Hang in there!!! And feel free to e-mail me if you need to vent. (julies3334@gmail.com)
    Julie

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    1. Thank you for your offer! I think just hearing from another mom that it got better rather than worse is helpful. I was beginning to get afraid that this would be the way it is from now on (or continually get worse!) and my sweet happy guy was forever lost to mad, angry Beans. Same for you. My email, and pm box is always open!

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  2. Your Beans sounds like I was except. Intellectually not-delayed (was thought to be, but was not). No one believes now. But. Spent much of childhood screaming or raging. Mother-parent said was demon-possessed because of violence and screaming fits, said I was her punishment for her sins. Father-parent said looked like angel but inside was rotten and bad. Used to "run away" a lot too, but they not mind that so much.

    Typing changed everything, inside head and outside. Made life hurt less. Growing up helped too. Still can not talk at all. But. Usually appear pretty calm most of time now. May be is why no one believes what child-self was like, so different from now.

    Sorry. Probably not useful for you.

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    1. Ari, and Inner Aspie, thank you for sharing such helpful information. I'm sorry that life can be so challenging at times. I do think that medications can help, as controversial as that topic can be at times. I believe that balancing medication with cutting edge nutrition and exercise as well as sensory activities that can help regulate sensory inputs comprise some of the solutions. And, Ari, as you said, finding a way to put your thoughts into words, whether by art or by typing.

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    2. Being able to communicate would help a lot for my son, I am sure. For awhile I thought that was the basis of his upset, but anymore I am not sure of that. I think it's more than that. He used to be a very happy child. It's only recently that he is so upset all the time. Thanks for sharing your experience with me, Aril

      Stephen, you're right. It is a controversial topic. I am trying my best with the exercise and nutrition. I don't think he eats well enough, but I have been told he eats better than any other of his peers in his classroom, so I suppose it's not too bad.

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  3. You're a wonderful mother and this is a very important and honest discussion about some very real concerns. I think the reason there are not a lot of resources is that there is not a lot of research/ knowledge on this topic to begin with. Maybe by bringing this out in the open that will change.

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    1. Thank you for your comment! I hope this helps things get more out in the open, as well!

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  4. I spot inconsistencies, by not understanding them. I understood everything, except this paragraph:

    ""You need more support/therapy/to work with him more" Yes, because if my child is more disabled than some people think he should be, it means that somewhere someone is failing him. If I try to explain that I let him be who he is without pushing him into being something that I want, no matter how unatrural it is for him I get..."

    My thoughts:

    I need more support, but no one is failing me.

    I don't understand how letting him be who he is is a contradiction to "you need more support." (That doesn't mean it isn't a contradiction! I just don't understand.) The best assumption I can create is, support would be forcing him to be someone he's not. I am probably wrong, but on the off-chance that you have made this assumption: When I have support, it will not be to change who I am.

    With the meltdowns, these are my thoughts. Why is he having the meltdowns? Frustration, says your post. From the things you mention in the post, it seems to be from telling him he can't do things. In the past, when explaining things to be in lots of blunt detail has still resulted in meltdown/shutdown, it's because the blunt detailed explanations were inconsistent, ie: they make no internal sense. Perhaps I am missing a detail, but more often than not it's that NTs have a way they see the world that I am not aware of and that is not better than other ways. A translation of this is, other people are making an assumption that I am not aware of, usually a judgement statement, ie: "this activity that seems [bad/good] to Lotte is actually the opposite to everyone else." For this, I have improved my own ability to understand the NT version of the world by reading "A Field Guide to Earthlings" by Ian Ford, which is a book on neurotypical processing and worldview by an autistic person.

    The best way I've found to help prevent meltdowns in myself is to distract, and then explain later. Scenario: rather than say "nooooo don't swim in that lava!" to me, it's best to say "oh hey look, a convenient nearby yarn shop!" and then a few hours later when knitting say, "Can I talk to you about lava? It's very dangerous, you know..." I usually know I'm being distracted though. You have to catch me early or have a really amazing thing to distract me with.

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    1. Oh, and I am curious about which conversations we need to be having, because I came here after seeing the title and I can't tell from the post. But it might be obvious to everyone else, so please feel free to ignore this bit. ;)

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    2. The support comment is more in reference to the therapy/ work with him more comment. Support that is actually supportive of him would not change who he is. Trying to put him in a strict ABA program would.

      As I said above, he has always been a pretty happy guy. This mood difference is sudden. While most of what you said doesn't apply to him directly, I do think you're right that he feels opposite of everyone else. He wants to be able to do what he wants, and go in and out of places as he pleases just like everyone else gets to. I can't let him do that because of safety reasons. Distractions used to work. He doesn't respond to verbal speech, but I used to have a favorite toy, candy whatever that would entice him to leave the forbidden activity, but now he doesn't care. I have even bought special items for these times where he is wanting to have or do something he can't have, but he is standing his ground.

      The conversation that I am wanting to have is about how puberty affects severely autistic/developmentally delayed children. There seems to be little resources.

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    3. I understand. Thank you for clarifying. :)

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    4. Thanks for your comments. It got me to thinking. I am going to try another approach as we await a doctor. I think I am going to try letting him go in and out of any room that I am in, instead of closing gates behind me to keep him out of unsafe places. One of his favorite stims is to rip up, and chew up a multitude of items, some of them are very dangerous, so I can't childproof the whole house for him. It's not possible, but maybe if I let him have more freedom he will be calmer, and feel more validated. Right now, I know he thinks it's unfair to him that everyone else gets to do things he doesn't. Your lava comparison was pretty fitting in that most of what he wants to do would be either impossible (I can't control that the weather isn't right for swimming for example) or very dangerous, like letting him chew on plastic wrappers he could choke on. However, maybe if I let him walk around the house with my more under supervision, he might be happier. It will take up most of my day, because he has been pretty much not wanting to move out of anywhere I ask him to, so I might be stuck transitioning him from the kitchen back to the living room for 30 minutes, but maybe he will feel more listened to if I do that. I don't think this will solve all of it, because even during days when everything is going well, and we're doing all of his favorite things he still gets violent, but I will try to see if it doesn't take his overall frustration level down.

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    5. That sounds good. If the current way isn't working, at least a change of variables means more data to work with, and whether it works better or not you still know more than you did. I hope it helps.

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    6. I have another thought, but it might not be appropriate. It might be all wrong for you and your son, but I'll mention it just in case. Also, you might've thought of this ages ago. So, er, sorry if this is unhelpful.

      You could stim with him, and learn some good safe stims with him.

      I am going to Autscape in Yorkshire next week. I hear there is outdoor evening group stimming, and I hear good things about it. Sharing stims sounds really lovely. I'd like to pick up some harmless fun stims while I'm there; some of my stims are a bit damaging at present. That's why I mentioned stimming with your son, in case he might like it too.

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    7. Arg, more that I forgot to say! Lots of our childhood stims stick with us, but sometimes as we grow we find better stims. So there's probably a stim out there that's better than chewing stuff that's not good for him.

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    8. I do do happy stims with him, because they are natural for me, but I have never been able to learn, or even stim on command. I wonder how that would work? My stim are usually a direct response to sensory, or emotional stimuli, and are just automatic. I don't even think about them, or even am aware that I am doing them most of the time.

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    9. I think most stims I do just sort of happen accidentally or evolve from a situation, but if I do an unfamiliar stim deliberately I can see it differently and maybe learn what's good about it. I guess I'm thinking maybe your son might do that sometimes too?

      I think the ones that happen without me thinking about it are the best for me, though. Hm, I'm not sure how else to talk about it! But if it doesn't work for you then cool. :) You obviously connect with your son pretty well!

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    10. He might be able to learn new stims. I know some autistics pick up stims from others, because I have seen them talk about it. I guess I just am not one of them.

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  5. I am an educator working with children with severe autism like your son...first let me say how much I love my job. I have been researching autism and puberty for a few years so that we can build up teaching and support materials for our pupils. We are still developing these and hoping to support our parents too. It may not help but there are two reports I read which are helping us develop a sex and relationships curriculum - the Danish Report and the TEACCH report (http://www.autismuk.com/?page_id=1307). We have found a little at a time, repetition and social stories really useful in helping kids understand growing up and emotions...even with the more severe pupils. Not sure if it helps but hope you will find the help you need and remember it is NOT your parenting skills that are in question... you must already be an awesome parent! L x

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    1. Thank for your reply. I am not sure how to reach my son, as he really doesn't seem to understand much language, and won't really sit and attend to social stories.

      I am glad to hear from an educator that is out there really trying to teach skills in a useful way, who also loves their job! Having a team approach is so important, and I love hearing from teachers.

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  6. Hello. I have a 14 year old son who has both Autism and Down syndrome. He has limited verbal abilities. There are definite differences between my son and yours but I was moved to respond because we have just come through a very rough stretch that I believe was linked to puberty. My son's body went through some very rapid changes linked to this and he was very disturbed by it. He didn't have the language to say it and I'm not sure he really understood what was going on. As the person above mentioned, I was able to use some social stories with him but I also would just talk to him about the changes he is experiencing regularly when the time seemed right. He still needs assistance with toileting so I would often just mention to him changes that were happening to his body and tell him that it might make him feel confused or angry. I don't know how much he understood but I felt it was important to give him as much information as possible as he would have no other sources to get that information. Most teenaged boys would have friends and could read books.

    But I'm not really responding to this post to share advice. I'm responding because I wanted to say that when I read your post it reminded me of how hard it was when my son started acting more aggressively during this time and I knew it was related to hormonal changes and I was powerless to make it better for him because I can't change what the hormones are doing in his body. But... things have settled down again. I just don't know if it was because of something I did or because it just ran it's course and he became comfortable with all the changes. We did not end up doing anything about medication but there was a point that I considered it and if it would have continued for much longer I would have looked in to it because he was so obviously more agitated then is typical for him.

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    1. Thank you for your response. It is helpful to hear from others about their experience, and what they did do, or didn't do. I try to talk to him with the intention that he can understand me. I don't know that he can, but it doesn't hurt to try. I may try to make some very basic social stories, and see if they help.

      Thanks again for your comment. The more ideas, and experiences we put out there, the more they might reach a parent going through the same thing, and feel like they're not so alone. I love hearing from everyone, even if the advice might not apply to my son(s) directly. :)

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  7. my boy is a little older than yours. I have been writing a lot of stuff like this very thing recently, I invite you to read my blog. Contact me if you wish. This crap is hard on so many levels.

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    1. I don't know how this comment seemed to get past me, but it did. Sorry about that. Thanks for your comment. I will check out your blog. I also have an updated part 2 to this story here: http://inneraspie.blogspot.com/2014/03/then-there-is-bipolar.html

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