Navigating Teenage Severe Autism: When Everything Changes and Nothing Makes Sense

We never expect our lives to require staying in high alert mode indefinitely, but parenting a severely autistic child often demands exactly that level of vigilance and adaptability.

• Experiencing the heartbreak when your child begins hating everything they once loved
• Dealing with family members who don't understand your child's needs or your parenting approach
• Navigating the additional challenges of puberty with a nonverbal teenager
• Learning to recognize when your child is being mistreated, even when they can't tell you directly
• Finding creative solutions when traditional therapy approaches don't work
• Discovering grants and financial assistance programs for autism services

Remember to ask organizations about available grants if you need services for your child. Many places offer application assistance to help you qualify for these resources.

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Transcript

Speaker 1 0:18

Hello and welcome to the Parenting Severe Autism Podcast. I am your host, shannon Chamberlain. I'm so happy that you're here with me today. Autism Podcast. I am your host, shannon Chamberlain. I'm so happy that you're here with me today.

Speaker 1 0:31

One thing I never expected as a young adult was that I would have to ever live my life in high alert for the rest of my life. You know, I purposely did not join the military. I purposely stayed away from all kinds of things that would cause me that type of discomfort, and especially after my parents passed they passed before I was 30, that was my closest family, so I never expected to be in any high alert situations with family either. And then, all of a sudden, this autism stuff just causes high alert all the time. You know it's just everything. When you have a child, I know that things become very clear and your priorities change for most people, I imagine and the way that others act out in the world becomes a point of scrutiny for you, because you somehow feel that that may affect your child in some way. So that's always a concern. But when you're in a caregiving or parenting relationship with someone who is nonverbal, the high alert becomes so much more intense, in my opinion, I've done my fair share of nannying for babies and toddlers and stuff and I think the high alert is a lot more intense with a nonverbal child that you're responsible for.

Speaker 1 1:37

There was one time when we were in our townhouse, the niece came over to stay with us for a few days and she got on my computer and started posting social media updates that she was at her uncle's house getting drunk and getting high and really she was home alone while I was at the office with my son. And then I came in and I caught her doing that. As soon as I saw that on my computer, I went into high alert mode. It was really unexpected and I just thought you know, she's risking a lot. Right now. She's underage and she's pretending that her of age uncle is providing her with liquor and drugs. I mean, she's totally disrespecting everything about this relationship and this arrangement. She was just going to come to visit because she loved her uncle. Now, all of a sudden, she's put us in a potentially dangerous legal situation and she hasn't thought once about her half-brother, about what danger she could be putting him into, considering he's nonverbal and his dad and I are the only ones who really know how to communicate with him, to help him through this world. Not to mention she's risking our business, which is what takes care of our son. So we had to address that right away.

Speaker 1 2:46

And shortly after that, the grandmother my spouse's mom contacts us about taking the nephew off of her hands because she is the legal guardian for both of those kids at the time and she said she couldn't handle him. And we actually wanted to help because we thought that he was being treated unfairly and not appreciated and people weren't very nice to him around here. So we were glad to take him, even though it was an extra burden on us in so many different ways. We took him and we're trying to give him a good life, give our son a good life, help everyone in the situation have a good life.

Speaker 1 3:23

And I started noticing our son getting really irate in the mornings and they had to share a bedroom and there was a lot that was going on that the kid had no respect for our son or us. It was a really bad time and we were not able to take care of him for long. But while he was there, he was actually picking on our son and I caught him. We didn't know what was going on. He was so sneaky about it. He would sit right next to our son in the morning while I was making them breakfast before school.

Speaker 1 3:51

Every day they would watch Mickey Mouse and during the show they're sitting on the floor looking at the TV and the nephew is in his ear. I couldn't tell, I couldn't figure it out. Why is my kid freaking out like this? He never does this. Why is he so mad? Well, it's because the nephew was whispering in his ear. I don't know what he said because he would never admit to it, but I saw it and I saw my son react to it. Whatever it was he was saying was pissing Jacob off so bad that he would just start yelling and he would. I think he would put his hand on his ears and he would start yelling and getting up and mad, walking around and saying oh toodles, oh toodles. And I have no idea what that was about. But the nephew would just sit there and laugh. And that's what made me start watching from behind them. Thankfully we had a little roundabout house that I could just go through and check on them from a different angle.

Speaker 1 4:43

But that yelling and stuff is what made me start investigating the behavior, and it was because of him. I couldn't even trust that boy to sit next to his half-brother. They grew up together up until that point. You know, it hurt me that now my son's irritated. No one ever picked on him before. This was his first taste of it and it was from him, you know.

Speaker 1 5:03

Then another thing the nephew tore apart my rubber tree plant and blamed it on my son because he knew that my son couldn't talk. But I knew that my son didn't do it. I knew it. He never paid attention to the plant. He didn't give a shit about the plant. There's no way that he would go and do that. But I know that the other kid is always tearing stuff up. So hmm, but yeah, he actually had the nerve to blame that on my child and I just, you know that stuff made me so mad and I just thought it was so rude and we just thought we need to know why these things are happening. We felt like we needed to watch him like a hawk for years and then all of a sudden, when we're living in Wisconsin, we start having all these problems with him, starting probably around 13 and 14.

Speaker 1 5:46

With him starting probably around 13 and 14. He's not communicating. I mean, we used to think that everything used to be so intuitive between us. We could tell what he was feeling or what he needed or wanted, because we just we were in tune with him and we knew what his actions were leading to. So it was really easy to communicate in that way and kind of be a little more intuitive than just wondering what is it? What is it? And then all of a sudden things started to change and he goes from being mostly cooperative and actually trying to listen to all of a sudden completely disobedient, just not even entertaining the fact that we're talking to him.

Speaker 1 6:22

Eventually, one day he did the side thing again, where he wouldn't look at me and he started shaking his head again, just like the last time when he said I need you to stop talking. And this time he said I don't want to listen. He said it perfectly and it just stopped us. We confirmed that with him and he said I don't want to listen. And then every time that we would try to communicate with him, he would shake his head no. And and every time that we would try to communicate with him, he would shake his head no and say I don't want to listen. I don't want to listen. That was just his go-to for everything. If I, you know, it's time to brush your teeth, I don't want to listen, it's time to do this or that, I don't want to listen. And that was all he would ever tell us.

Speaker 1 7:02

And then we started, but we did our best to say I don't want to listen. We were just trying to give him a taste of his own medicine, because he didn't want to listen to any other form of it. So we just resort to things. You know, we try this, we try that and eventually we end up feeding it back to him and seeing how do you like it? You know, and I've done this a lot with him just to help him understand. I don't know if it helps or not, honestly, but it's kind of a last resort.

Speaker 1 7:28

Anyway, shortly after that, he decides that he starts hating everything, and it just this was when, you know, we started noticing that he hated my smile and he hated my laugh and he didn't want me to be happy and he hated us talking and being happy together outside and all of that stuff and ruining everything in my garden. And it just like, day after day, he would choose one or two things that we knew he loved and all of a sudden he just hates it. And it was almost like he loved these things so much and we knew he did and it was like, was it a toxic thing? Like he loved it so much that he just began to hate. It is how it seemed. The things that he loved the most in life were the first things that he hated, and you could not get him to return to these things.

Speaker 1 8:13

He had a fish tank. He had some fish. He didn't even want to watch the fish anymore and he loved the fish. He always watches the fish and that's why we got him his own fish tank. But nope, he didn't. No matter where we were, if we were out in public with a fish tank or at home, he didn't want anything to do with the fish. And he didn't want anything to do with movies, all of a sudden. And he didn't want anything to do with games certain games you know just well, I don't know. It was very strange. He would still play games, but the ones that he loved the most, he wouldn't touch them.

Speaker 1 8:41

We still do have big regrets. I think our biggest regret as parents is the amount of screen time or media time that we allowed him, instead of having the time to work with him or having the resources to have people come and work with him. If he, even when he was in school, during the downtime, there were four hours a night that I had to work and we had an office and I had to be there and I couldn't deal with him. So he had an Xbox in his private room and he had a futon. He could, you know, do anything he was. I had a kitchen, everything was great, but I really wish there was some other way to have kept him occupied, but really there was none, and it is a great babysitter. But it would have been smarter for us to cut that time down as our lives changed, instead of allowing him to slip into that world of make-believe and video games. Because we did see. I know I talk about it a lot, but we saw some really scary changes in him, which will be highlighted during these episodes, of course.

Speaker 1 9:41

But yeah, he hated the movies, he hated the games, he hated anything at all. He used to like going, of course, but yeah, he hated the movies, he hated the games. He hated anything at all. He used to like going on walks no, now he hates it. And then he loved these certain shoes, and no, now he hates them. And then he loved these pants and we thought, well, maybe he's growing out of them, maybe you know, so we would get him new stuff. And he just didn't want anything to do with anything, it was just. It was.

Speaker 1 10:03

We used to be so good at this intuitive communication with him and it was like it almost felt like he didn't want us to understand him anymore and, logically, that doesn't make sense to us, because if you can't communicate your needs and wants, why would you not want people to understand what you need and want without your communication? Why it doesn't make any sense. But it sure seemed like he didn't want any part of it and, yes, part of it may have been that he was a teenager. All of a sudden, and just like the rest of us when we were teenagers, you know you're embarrassed of your parents or you don't want to. You know he didn't have that, obviously. But things change. You start to hate people. I don't know, maybe it was normal, but it sure wasn't. To us it was really depressing.

Speaker 1 10:49

He became just so depressing and depressed all the time, and there were some things where I didn't know what else to do and he would shun his things that he did request to have. Let's say, two weeks ago he wanted this thing and we got him this thing and he didn't want anything to do with it and he was abusing it. You know, whatever it was, it was just every the tables turned, everything was different and I got to. I got so frustrated I started asking him, like, are you all done with this? Then All done, and he would say, yes, all done, and I would say okay, so we could put it in the garbage. The first time I asked him that he stopped in the garbage. He's in a garbage and he didn't care. It was a threat and he didn't care. He was also constantly scripting. I don't know, I just call it scripting. He'll use this voice and he'll say stuff, you know, and it's always movies and games or characters or something. He still does that now.

Communication Breakdown: "I Don't Want to Listen"

Speaker 1 11:44

But this is when it started, when he was 13 or 14, and he kept obsessively saying Batman, dark Knight, you know, and every time he obsesses about something like that, I try to satisfy that obsession, like with the Turbo man doll that doesn't exist. So we just thought oh okay, so do you want Batman Dark Knight? We would try to figure it out. Do you want the movie or the game or what you know? And so we showed it to him at the store. I believe we're like, hey, do you like that? He's like oh, batman Dark Knight, should we get it? Yes, he says, and then he hates it and he started obsessing over it and he would carry it around with him and then get mad at it and then he hated it. I was glad because I had to take it away anyway.

Speaker 1 12:24

Then he did it with Army of Darkness and Doom, which is a movie. So first it started with Doom and he would just say Derm, derm, and he would show it to me on the computer screen. So I was like, is this a game? And he would indicate that it was a movie and do you want this? And he would say the Rock was in it and stuff.

Speaker 1 12:46

And he seemed really in love with this movie, doom. And finally we found it and stuff. And he seemed really in love with this movie, doom. And finally we found it and double checked with him and triple checked with him Is this what you want? And he got very excited and he said yes, yes, and we got it for him, and then he wouldn't watch it. He watched it one time and he wouldn't watch it anymore and he would hide it away from us or away from himself, I'm not sure, but I would always see him hiding it and he didn't want anything to do with it. But he would take out the cover of the DVD and he would focus on that, really close to his face, but he wouldn't watch it anymore. I think he thought it was too scary or something. It was really strange, because he's seen much worse and I still don't know what his problem is with that.

Speaker 1 13:23

He still has a love-hate thing with Doom and once that itch was scratched, he starts going on to Army of Darkness and he used to say oh, it's okay, army of Darkness, we'll get it, we'll get it. And he would always specify like PSP, or he would say Xbox 360. And he always would do this scripting, this chatter, and we would get the whole story. And that's how we would find out when people mistreated him as well. You just have to listen. So we're listening to this chatter and we're finding out what he wants, what console or what system it's supposed to be on whether it's a movie or a game. You know just all kinds of stuff. Is it a cartridge game or a DVD? All kinds of stuff would come out in all these little chatters. You just had to be able to understand what the words were, because he's not very obviously not very good at saying the words, but he was constantly chattering.

Speaker 1 14:16

So anyway, we found out through all that chatter that Army of Darkness was a game that his papa had Tweedledum at his house and when Jacob would visit he would play that game. So we realized that perhaps he misses playing that game and perhaps we should find out if he would like us to get that game for him, because he kept saying things you know, and he indicated that yes, he would like to have that game. So finally his grandpa brings it to us from the house. He's like I don't need it, I don't play it, it's just for him. Anyway, I'll bring it over. So he brings it the next time he visits, which we didn't have to wait long.

Speaker 1 15:02

All of a sudden I find it in the garbage. I'm like what, jacob? What is? What is this? He's like it's army of darkness, very scary. I think he said, or something negative like that and I'm like, well, we can't just throw it in the garbage. Are you sure you want it in the garbage? He's like, yes, garbage. I'm like, okay, and then I dug it out anyway behind his back and I cleaned it up. So I'm like, well, you know, I don't believe him. I think he's going to want it back someday and I don't want it to be gone.

Speaker 1 15:23

So he found it and he threw it away again. It just kept happening and I just didn't know what to do. He would just throw stuff away randomly and he would then dig out the container and put the disc in there. And then he would dig out the disc and put the container in there and we just were like, hey, we don't want you playing in the damn garbage, so we removed it again, and then he would ask for it months later and we'd give it to him and then he would play with it for a while, just looking at it, not actually playing it, and then it would end up trashed again and he acted like he was mad at it, like he hated it, just like everything else.

Speaker 1 15:57

So we were really nervous and scared about him just hating everything. We understood that he, you know, wanted to hate me and he didn't want to do this, he didn't want to do that. But it just started getting really bad and I even I didn't want to do this and he didn't want to do that. But it just started getting really bad and I even I didn't get the chickens for him, but I did get some chickens and we thought that he might enjoy that at some stage of their lives. But he didn't want anything to do with seeing the chickens, learning about the chickens or anything.

Speaker 1 16:22

And the one that really made us nervous was this stuff went on for one full outdoor season and then the next outdoor season he actually stopped liking the four-wheeler. He used to drive the four-wheeler we would let him and he was very good at it and he loved it. He would also ride on the back when his grandpa would take him on rides and stuff and he just loved. He's always been around ATVs, so for him to actually not want to be on the four-wheeler at all, he acted like he was scared of it for some reason. All of a sudden, and I don't know, it was like we spent the winter inside not doing that stuff and then all of a sudden, when it's time to start playing outside again. He just took one step up to it and looked at it like oh my gosh, I can't do this. And then he stepped away and he looked at us like ah no. And he never touched it again, not for almost the full season. Eventually we got him on it again. I just couldn't take it. I couldn't watch him give that up. You know, he loved that. I couldn't take it. So we did eventually. We tried and tried and tried and we worked on it all the time and we eventually got him back on that four-wheeler. It was just really scary, though, that that was the last thing that he would do, and then he just wouldn't do shit.

Speaker 1 17:40

And the grandmother has this thing where she'll say she wants to visit with him. Whether we're at her house or she's at our house. We don't see her anymore. But this is what used to happen. She would call it spending time with him, but really she would just lay in bed and sleep and let him lay there with her and watch TV. So when she came to our house, she decided to go lay in his bed and sleep and ask him to lay with her all day, and that's her way of spending quality time.

Speaker 1 18:12

Well, I mentioned in my last episode that he was always screaming. We tried to tell her that. We told her, all he does is scream. He's very unhappy and he's very hateful and we just don't know if it's going to be the experience that you're looking for this time around. And she didn't care or she didn't believe us, and she came over with whoever else came.

The Hatred Phase: Rejecting Everything

Speaker 1 18:29

This is an eight hour drive for these people to get there, you know, and we were just trying to let her know. So she gets there, high, high at the door, and then she goes up to his room to do the thing and he cried and screamed and cried and screamed and we were just downstairs. I mean, it was annoying to us and it, you know, it was making us angry, but we're also just laughing, because she thought she was like this magic touch person and she would just come and fix everything. And she always looks at us like we're a problem and she couldn't fix it. And it was kind of funny to us because finally we got her to see things our way a little bit. She did come downstairs wondering she's like, why is he doing that? I don't know. She just had this look on her face Like it was our fault. I don't know. You know what I mean. So we're just like I don't know. We don't know why he's doing it, I don't know.

Speaker 1 19:18

You get those looks from people where they think you know, I think you could try harder, maybe you could do a better job parenting. You know, it's just those looks. Maybe we were just misunderstanding the looks, but we feel the looks as parents of a severely autistic child. You know, we feel it and I don't know. It just seemed like we were being scorned, you know. But it's not our fault, there's nothing we could do. We tried.

Speaker 1 19:39

I took him to the ER all the time, I mean, you know hello, but I just thought she saw me put him in time out and he was not listening and I had to growl in his ear the timeout that faces the wall. He was not behaving because we had extra company Trying to be nice, trying to be nice, trying to be nice. I finally leaned down into his ear and I said you are not being nice and she saw that and I didn't care. This is how I have to do things. You're here or you're not here, it's all the same and I'm not going to hide it, you know, she gave me the shittiest look, and then all this screaming and crying. This was all during the same trip. We just I don't know, I couldn't. He was just screaming and crying all the time and he cried for over an hour while she was trying to console him. And the more you try to console him, the more he cries.

Speaker 1 20:22

He's just a big actor. And that's exactly what happened at the CP center. He was in there, I had been forced to be in therapy with him, to sit there, and I, you know, I said no, I can't do this, I can't listen to this. If he's going to act this way and you're going to be okay with it, fine, because I can't get him to stop doing it, but I can't sit in here. I already sat through a whole truck ride for an hour and the whole morning he does this. This is all he does. I can't, I need a break. I got to go outside, you know, and I would leave him there and go outside and come back after just a few minutes, because I didn't trust him in there. I couldn't be out of the building for very long and I could just hear him screaming and wailing and crying hallways and hallways away and I knew it was all fake and I just man, you can't stop it, but it was just terrible. Anyway, that's all he ever did and the family didn't understand.

Speaker 1 21:12

I had another time when the family thought they would come and I mean, this is not a secret. This has been going on. He's been getting progressively worse during these years and the family has seen it because they were coming over. Everyone loved the land, everyone wanted to be there. So one time Tweedledum had gone home for a while and wanted to come back and he brought everyone with him. We knew they were coming and we knew they would be there in the morning.

Speaker 1 21:38

And I woke up one day and this is what I'm talking about with having to be on high alert all the time. This fits into that. I wake up, it's four o'clock in the morning or something and it's dark outside, it's cold outside. They've been sleeping in the truck or something for a while, but they didn't tell us that they were coming that early. They didn't say we will be there before you wake up. And I don't know about you, but my kid doesn't wake up well, he never has awakened well. So I was really on high alert instantly as soon as I got up, because I turned on the porch light to check for animals so I could let my dog out. And there is a truck full of people sitting in my driveway looking at me and now they're all excited. So now they've had some rest, they're hungry, they're a little bit chilly and they're excited.

Speaker 1 22:27

First thing in the morning and it's still dark out, my kid is just getting up and I'm supposed to be happy with these people and they didn't understand why I was really put off and upset and just not having it. You know, I didn't even want to let him in the house because he sucks and he has sucked for years and I don't want anyone around. You know you're going to mess up the whole energy with your happy vibes and your shit. We have a certain way that we have to go about our morning just to survive it with him, and these people have no respect for that. They don't care, they don't think anything of it, they don't understand or even try to see our point of view like oh gee, I wonder how their mornings are.

Speaker 1 23:07

I wonder if things are always this bad, or is it just at this part in the afternoon? Maybe I should ask. Maybe I should see if they need anything in the morning. Maybe I should ask about breakfast or what's the routine? No, nobody cares. They just come over and push themselves on us and they suffer nothing from it. We are the ones that suffer. Jacob suffers and he's the first one to show it.

Speaker 1 23:29

So that's what I mean about being on high alert. You know this is stupid behavior. I should never have to worry about that stuff. I should be able to just wake up, get my kid up, feed my kid and not have to worry about a truck full of happy, smiling people invading my kitchen before my kid has time to get acclimated. Like I've said before, it takes him 45 minutes to get acclimated to anything. That's why therapy wasn't good in school. That's why therapy doesn't work now, because the appointments are only an hour and it takes him 45 minutes. There's just no way around that. Even with meds, it doesn't matter. It takes him 45 minutes to adapt to anything, unless he's getting a massage, then he's okay. I just never expected this high alert lifestyle and it really is just a separate issue from chronic stress. It's separate. They just compound on top of each other, I guess. So with all that the hateful stuff and I, you know, I hate everything. I don't want to do anything, I just want to shuffle my feet and not talk to anybody. I'm going to tell you, I don't want to listen to you. I'm going to scream and cry all the time During all of that. He also is beginning puberty.

Speaker 1 24:34

As you know, he was accused of being inappropriate with that one girl that talks in beeps at the autism swim. I know that it was viewed that way, but I know him and I know that he didn't mean it that way. He just, you know, he's not aware. Duh, he's not, he's not aware of things. But another time during the swim, he did get a Woody and he was actually in the bathroom. They were trying to get him to come out because he was supposed to be changing. So he's in there changing out of his swimming trunks into his clothes so we could go home. And dad was with me that day. It just happened to work out that he was with me.

Speaker 1 25:09

But the lady went to check on him and she's like oh, dad, I think you need to check on him. He's got something going on in there, you know, and he couldn't fix it. He didn't know what to do. These things just pop up, you know, and you can't read a lot into it when they're that age. I mean I had actually had lots of friends who had the nickname Boner. They just pop up, there's nothing you can do about it, you can't control them at that age.

Speaker 1 25:31

But after a few issues with accidental pop-ups, we had a talk with the lady and she recommended to us to get a pocket pussy. And I sure didn't expect that. But I mentioned it to his dad and he said, well, absolutely not. The main concern was who's going to clean it? He definitely isn't. He can't even wash his hands.

Speaker 1 25:52

So yeah, but I mean he, he would get mad at it and he would say I get out of my pee, get out of my pee. Sometimes he would be bleeding, you know a little bit and I thought, oh my gosh, this is happening and we need to do something, so, something. So you know, we kind of talked about it as a family. We came to know it as he says tickle my pee. So we say, okay, you could tickle your pee in your room and you have to have something. We gave him this bottle of spray lube and tried to explain when you tickle your pee, spray this on your hand, and then you can tickle your pee, okay, and he's like, yeah, okay, okay, and I don't know. He never used the lube, never, never. He always. He's still got a bottle in his room now and it never goes down at all.

Speaker 1 26:34

But we tried, you know, we tried to help him not rub himself raw, which was becoming the problem. We just didn't want him to, you know, walk around in pain. That's what his dad said. You know he can't walk around like this all the time. It's going to end up hurting him, and we didn't want to get him a male masturbator, or a pocket pussy, as she called it, because of the cleanup and the responsibility of a mechanical unit. So we tried the best we could. He knows what it is and he knows what it does, and that was about it, but I don't know how to handle it, other than that, eventually, the reports of inappropriate showings at SWIM decreased. Maybe he figured it out, I don't know. He just really loved getting in the hot tub and you know, and I don't know, like I said, you can't control them at that age especially. So more on that organization later.

Speaker 1 27:19

I did want to say, though, to close this off.

Navigating Puberty Challenges

Speaker 1 27:21

I want you to know that there are grants available. I just remembered that that's how we got the therapy services at the non-profit organization. So if you find one, you know some kind of non-profit autism organization that offers things that would help you and your child, but they charge money for their services. Ask them if they have any grants that you could apply for and they'll actually probably show you exactly how to apply, exactly what you should say in which areas of the application to make sure that you get approved, because so many people will put in, they'll accept so many applications per quarter and you want to make sure that you get approved.

Speaker 1 28:02

It's like a thousand dollars worth of services and stuff like that Little bitty grants. That is how we were able to get him the help that he needed before services were actually available for us. Grants, grants, grants. In my next episode, some more weird things that started happening around the same age of when he started getting hateful about everything and stopped caring about anything that he used to like. There's so much more to tell Until then. Hang in there, you're a superhero.