#55 | Worried about son going off medications

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0:13
Hi, it's Lynn, your adulting coach

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I help autistic young adults and their families systemize adulting so we all can create lives we'd love that works. Thank you for watching this video.

Today's struggle comes from the parents of autistic adults on Facebook. Our Mom is worried about her son going off medicine that he's taken a long time and she's asking for other people's input.

So her thoughts are:

• We've decided to take a break from medications as we didn't see it helping.
• He's taking meds for years for anxiety and aggressive behavior including Prozac and sit, relax.
• Nervous about what's to come.

And I really appreciate her sharing this struggle with us because this is something that we do face. we face it often in our household and have noticed some patterns that I want to share with you.

So first let's look at the struggle using Barb Avila's process from her book SEEING AUTISM. We're going to look and try to understand what's going on first, figure out how to connect best with ourselves and with our autistic young adults. And then finally, what are the practices that can help us navigate this struggle as best as we can.

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I want to offer that medicines that target anxiety and aggressive behavior do so by affecting brain chemistry. And the minute we work with our brain chemistry we have to understand that we don't know what's going on.

2:12
We're not sure exactly how those chemicals are impacting what's going on in our in our brains. And it just means that we have to proceed with caution.

2:24
My experience was that just weaning off of a very low dose off imipramine, which is an antidepressant.

2:35
I was only on 30 milligrams, they say it needed to be 100 to be therapeutic, but that's all that I needed. And I was on it for years.

When I decided that that I had to get off of it because it was causing my heart to race and my blood pressure to be high 24/7 It wasn't following my rhythms of sleeping at all. It was not not good for me.

2:57
So my doctors and I agreed that I needed to wean off of that to figure in to see if that was causing the problem. And it was and ended up being it.

It took me a year to wean off that medicine because I went down 10% of the dose by each month. So I was able to you know, cut the pills and make it so that it was just 10% less each month. So I would go down 10% And then I would adjust to it for the next four weeks. And then I'd go down another 10% And then I adjust to it the next four weeks.

It took me a year to wean off of it and not feel the impact of that medicine and the weaning process. I experienced headaches, I experienced low energy, and I experienced a need for additional sleep.

3:46
I did sleep an additional hour to an hour and a half each day. And you know I was concerned, "What am I going to be like when I'm off the meds. I don't want to go back into the depression that I was in," and that was why I took the medicine in the first place.

So I really focused on managing my thinking and I'm happy to report that that I've been off of the medicine for a number of years and I'm able to manage my mind.

I do cycle, just like any other human being, I cycle in and out of depression that's normal. I'm able to get out of them faster and I have the confidence that I can do that. I know exactly how to look at my thoughts and how to feel my feelings so that I don't have don't stay in those depression dips. I recover faster, and that was my goal.

And so that's what we're trying to help our autistic young adults  do. If we decide that we don't want to take the medicines anymore, how can we help them figure out how to function best without the chemical intervention that pharmaceutical provides?

And I'm not anti medicine at all. I'm really grateful that I was able to have that antidepressant when I needed it.

I do think though, that we're not always told that it's going to be a process to get off of it. And that was my real learning in my case was that I really needed time to get off of it because my brain had to adjust from not getting the chemical externally but producing it itself. And that was why I was experiencing headaches and low levels of energy and an extra need for sleep. Because my brain was adjusting and I'm thankful that our bodies heal if they if they're given ample opportunity.

We want to remind ourselves that throughout this process our role is to encourage, warn and to be consulted by our young adults. Let's just keep that in mind that we cannot dictate what's going on anymore in their lives. They are definitely and don't want to anymore.

We want to encourage that movement from dependence to independence to interdependence with us and especially in that consultant Park.

6:00
We want to set up an environment where they feel comfortable consulting with us that they know that they're going to be really listened to well, they're going to be encouraged that on occasion we're going to give them a warning but we're going to try our very best and we're not perfect to drop the judgment of what's happening in their lives or their thoughts with their thinking. And that is a good challenge for us. And we you know, because what we want to do is is encouraged adulting we want them to to create those set of mental tools that help them manage their thoughts. emotions and actions, which is what predict produces no results so that they can achieve goals results set by them for them. And that's when they make that crossover from being a child emotionally to an adult emotionally is when they take accept responsibility. For the results that they're creating in their lives. So how do we best to do this? Well, let's connect with ourselves first and with them using the Stairmaster process. There. This is where we separate out what's happening in our lives into the five categories where we look at the situation, the situation is always neutral. It's always outside of our control. And then we noticed that those situations are going to trigger a bunch of thinking in our head, which is going to flavor our emotions and it's going to generate actions, a certain type of actions depending on what emotions we're feeling, which is going to create our results. Now mind you this looks like it's a duck to death to death about the thought process but sometimes it's like go to the Thought go to the emotion creative. Some it's not always a linear process. But it's wonderful to just put these what's happening in our lives into those buckets, and then we can separate a little bit from them and really examine what's happening. So, as a parent, I like to make sure that I get slow and my arousal is low. And I remind myself to be loving whenever I'm trying to work with my young adult and then I went, Oh, I need to apply this to myself as well. So I need to slow things down and I use next year map to do it. I need to make sure that I'm regulated and I have you know, I'm not charged up because if my limbic system then I'm pointing to the back of my brain because that's where it's located. The printed part of our brain makes kept us alive. All these you know, 1000s of years is not stimulating me to go to fight flight or freeze. That's why I need to go to the low arousal state which is when I'm able to access my prefrontal cortex which is the place where we do our problem solving and loving just because when I feel love it flavors the way that I think so It's love for myself and that self compassion is a key ingredient to being able to be an effective coach are autistic and adults. We need to we need to take care of ourselves first. That's the oxygen mask analogy. And we need to notice that it that does take some effort it takes it takes intentional effort. And we need to share sometimes with our autistic young adults that this is a struggle that we experience as well, that they're not the only ones that have trouble with regulating their emotions. It's a human thing we all have trouble with it. And so what we want them to help remind them is that we got to be as flexible as we possibly can. We're trying to figure this out. And that means we're aware of those thinking, you are thinking using the steer map. We're aware of what's going on in our heads. We remind ourselves that we can do this and that we need to put together some strategies like how are we going to address what's going on in our brain? Our strategy is to use this to map and and collaboratively problem solve together. Our method is from Dr. Ross green in his proactive collaborative problem solving process that I'll review down below. So we have strategies. We also need to take care of our bodies and I in the way to do that is by feeling feelings and I'll get right to that now. So here's the practice. Our practice is so important because you know, what we want to do is shift our our focus shift our goal from the product that we're trying to achieve meaning independent interdependence with our artistic and analysis like I'm only going to be happy when we get there. No, no, no. We want to remind ourselves of the happiness research that Sonja Lyubomirsky and her group have been doing out in California for years, that it's not achieving something then we'll feel happy. It's we want to focus on the entire process of getting there and, and figure out how to make ourselves feel content. As we address these challenges along the way, and we just don't wait. We don't defer our happiness for that endpoint. Because if it doesn't work, we never reach the endpoint. We're always going to be challenged with life struggles, and that's good news. We need those struggles to grow. So I'm going to issue a warning here and it's from Bill Nason, who has a page on Facebook called the autism discussion page. And it's his work is phenomenal. He's worked with autistic people for more than 30 years. And he actually summarized it in a book in a series of three books and I'm very thankful for him doing that because I can learn from his experience that way. And he warns us that often we will identify what we don't like or what we want before we evaluate what our artistic and adults need and what they desire. And that's a warning from somebody who's had a lot of experience working with families who have autistic family members loved ones. So that's because we want to make sure that we understand what's going on with them because what's probably happening with them is what happens with so many of us is that we close the window on learning because we are afraid of failure. I'm not good enough, a universal concern. This is a concern that any you all human beings have. I'm not good enough or somehow my life should be different. Those are the concerns and life should be different as I need to grab hold of the power of my wife and control things that are happening outside which is a really ineffective strategy. We will never be able to control what's happening. That's the definition of the situation. Is that it is outside of our control. And you know what is our reaction to it our thoughts, emotions actions, our TI that creates the results te a you know what how we brew our tea is what creates our results. And you know this all whole thing about am I stupid, you know a lot of scientists against because they have been different they've gotten a lot of signals. It just have differently wired brain so they've got a lot of signals that well you're you're you're not you know, okay. And we have to remind ourselves that they also tell themselves that just like human being on a regular basis as well. And we just want to be really I mean, I remind myself on this all the time.

13:54
It's not easy to get my to get my own brain under control so that we can co create a solution that works for both of us. I mean, what we want to do is open that window on learning. We want to notice what's happening and figure out what works for our autistic young adults together. So we first normalize that it's okay not to know how we work best. It's okay not to know how this is going to turn out when we stopped taking his meds. That's okay. Things are going to come up it is not going to go according to plan smoothly. I mean, that's just one of those things we have to accept about life.

14:37
We have to recognize that the feedback that life is giving us is not about mistakes and failures. It's about learning. You know that frame of we're either succeeding or we're learning, I think is one of the truest things that I truest ways frames that I like to use myself, and that we want to create a parent and a young adult partnership where we're responsive and authentic and consistent and committed and solution oriented. And we both want to be there. We both want that and we're going to have to take the lead as the parent in setting the tone in making sure that our thoughts are consistent with those with those virtues and have been responsive and authentic and consistent and committed and solution oriented. That's we need to make sure that our minds are where they need to be in order for us to do that. And I think one of the best ways to achieve that trust that happens between us and our autistic young adults when they tell us what's going on is when we reflectively Listen, it helps them feel seen safe, soothed and secure knowing that another person who gets what's happening in our lives is such a gift it literally if you you can watch the body relaxed when somebody is really feels really heard. And this isn't just in my own experience. Our daughter's therapist explained to me when he was in training to do his work that he worked at a

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residential facility and he came upon a man who was holding a chair over his head and he was about race.

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And and of course, you know, they called they called our therapists and so you know, notice what's happening here and what he was able to do with saying you are feeling really angry. And he looked right at the at the adult the man that was with the chair and the chair pain down just from recognition that his emotion was noticed his arousal level down a few notches, and maximum it's so important that we do the same thing for our autistic young adults. So we have to really reflectively Listen, it's just three steps. It seems like that means I can't read your mind. Here's what I'm noticing. It seems like and you can use lots of phrases. I'm seeing lots of phrases but the idea is it's it's a tentative I'm trying to figure this out as to how you're feeling it's not I know what your feeling is. It's a tentative it seems like you feel and then we put the emotion word out there and you feel angry, you feel frustrated, and we don't even have to nail the emotion all we can say all we have to say is you're feeling really uncomfortable or you're feeling very comfortable feeling whatever it is. We don't have to nail it because a lot of people in the world it's like 13 to 17% and I don't know how they come up with that number have a thing called alexithymia which literally means without words for emotions, and alexithymia exists a lot in the population in America, but it's twice as frequently found in the autistic population. So we want to make sure that we aren't, you know, creating cognitive dissonance while we're trying to you know, label exactly what the feeling is that they're having like a poet. What we want to do is say uncomfortable and uncomfortable sometimes because that just at least it gets us into how we find a way in to what their what's going on with them. And the third step is because because you're not getting what you want and even be more specific about what that is. Kind of requires that we notice what's happening inside of ourselves to do a good reflection. We have to take in the information. We have to sort it out and we have to sum it up. That's because we can't just parrot what their words are because that unfortunately can feel like mocking when somebody is highly aroused. We want to say it back succinctly in our own words what it is, what's the meaning of what's happening at this time. And the more we practice this more often we get it right? But we'll never get it 100% Right. And when I talk to my to my autistic and adults, I remind them that I am doing the very best I can to be the best reflective listener for them. That is my intention, but I'm not going to get it right all the time. I'm going to mess up. I'm going to my own emotions and thoughts are going to get in the way sometimes but um, but that's my intention. And they know I just remind them look, you know that you that I'm someone you can count on to help you get what you want out of life, that I have your best interests. in mind. I'm the one that you always come to who's going to give you you know, my best thinking at the time so that you can decide what you want to do going forward. And you know, you can count on that because I'm your parent and I love you and I will love you till the end of time.

20:08
So we use the collaborative proactive problem solving process, where we agree on the facts of whatever lagging unsolved problem or lagging skills are happening and Ross screen tells us that whenever we see waiting skills is when we're whenever we see an unsolved problem is because there are lagging skills. This is what's happening, and that's why we're on the journey the process of helping our autistic and adults build their skills, build their tool cabinet, filled with skills that help them address the challenges the struggles in life, so that they have those skills when we're gone. And they practice them enough with us as their coach so that they get more and more fluid with them, which gives them the confidence on theory with trust, that trust that they can solve their problems themselves. And that's what we want to build as much as we can with our autistic young adults because then they can do with they can create a life that they love that works for them. And that is just the ultimate pleasure that a parent has. And we need to remind ourselves that every step of progress matters that the more we notice the progress steps, the better we're gonna feel our brain wants to see progress. And the veteran they're gonna you know, it's just really nice to be recognized when you when you say okay, well look at all the things that you're doing. This is really cool. I'm really impressed by the progress. The initiative you're taking actions you're taking the thinking you're doing the noticing you're doing all of those are great steps on the way because here because you know what's to come is always going to be a mystery.

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Obviously, it's the future. And so what we want and what helps us the most is if we start to look at some of the challenges is, you know, that's okay. And eventually we will continue to evolve to well, actually, it's good because the challenge that's happening here is going to help us grow the skills we need to to enjoy life more every day to enjoy this journey that we're on where we're encouraging and mourning our autistic young adults and being consulted by them as they grow up through the skills that they need to be not only independent, but ultimately interdependent with us so that we create a life together that works for all of us. And, you know, there are people that can see some of these big challenges as a gift and that's what we want to get to. We have a coach on our team who had a stroke and she says it was the biggest gift that she had. It was in her 30s and she struggled and it was painful to to recover from that stroke. But now she views it as a gift. So imagine being able to view a stroke as a gift. Well that's what we're that's what we're aiming for. So just to make sure that we understand, you know what it is that is at the foundation of the resistance that we're feeling toward the reality that we're heading into, is that it's really about feelings. And I do want to make sure our thinking is oh god or yuck. Or Oh no. And that makes us feel frayed. And so what we want to do is we want to make sure that we name that emotion. Is it comfortable? Is it uncomfortable? Is it high energy or low energy, low energy, what would be like an uncomfortable low energy feeling would be when we're in a funk or we're in one of those depression tests. We find it in our body, we relax into it we bring or sometimes we have to decide how do we relax into it. Sometimes it's actually movement, that it's a walking a form of moving our body walking, swimming, swimming whatever was several times that's the best way to relax into a feeling and then we try to describe it. Like what does it feel like? Is it and can we picture it in our body? Can we figure out what color it is the shape and movement asides, where is it and then say this feeling is caused by sentences in my brain? And, you know, that's generally when we when we're in fear, that's, that's always what's happening. Versus it's a sensation, which is like pain from a wound or you know, just the the feeling of cool air in our chest. That's something we cannot change. But the feeling that we're having the emotion that we're having is something that we can change based on the way that we think and then we just process that until it subsides and if we can teach our young adults to embrace the discomfort of change and growth, then we can help them to create a life that they love that works. If they understand that they are the ones that are in the power seat. They're in the driver's seat of their life. Heading toward that GPS point that they've decided is what they want. And they're going to get there is just not going to be easy because life really I mean, this is I love this Yin Yang symbol. It's been around for nearly two 3000 years, that life is equal parts happiness and joy and challenge and frustration. And we frankly wouldn't have any other way. We can't have one without the other. And the two together is what creates a life that we love that works because we're always learning and growing from the adversity. And if we learn from the adversity, it helps us to enjoy it when we're not in it. So I just leave you with that thought that the bottom line is that if we can help our autistic young adults accept the reality of the discomfort they're going to feel in their lives, and that it's so similar to the feeling that the discomfort that we have in our lives because it's all part of being human. And, you know, let's learn those executive functions, strategies that are going to help us process what's going on so that it creates a result that we want.

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That's what we do with the art of adulting. Please enjoy. Please come and join me. Lindsey Davis and.com We gotta put the www in front of it because I haven't figured out the Tech where you don't have to on that one. And you can find the transcript of this of this, of this video, and all the resources that I mentioned, there'll be links to all the resources that I mentioned here.

27:10
I hope to give this a try. I know this is an approach that has been working for us in our household bye for now.