Family Panel Discussion – Supporting a Child, Teen, or Young Person in Crisis

This week we are sharing the audio from a recently held online discussion on supporting a child, teen or young adult in crisis. The host is Mad in America’s Family Editor, Amy Biancolli, and with her are guest speakers Ciara Fanlo, a recovered troubled teen, Morna Murray, a parent who supports her son through crisis, and Sami Timimi, a child and adolescent psychiatrist. It’s an honest and thought-provoking discussion and vital listening for anyone with an interest in parenting or the challenges facing our young people.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

 

Amy Biancolli: I want to first thank our three guests for agreeing to be part of this panel, and I want to thank all of you out there for joining us. The topic is so compelling and important, what it means when a child of any age is in distress and what parents and other loved ones can do to support them. We’ll be hearing stories of crisis, but also stories of healing and hope. We will start with each of you introducing yourselves. Ciara, would you like to go first?

Ciara Fanlo: I would love to go first. I saw there are lots of people who are parents in the chat. [There] are people who work with teens and adolescents, and I’m here sharing the perspective of someone who was a troubled teen and spent many years of my adolescence in some form of psychiatric or residential care.

I have a story that’s probably similar to many of your children or the teens that you work with. I was full of curiosity, compassion, and energy when I was younger but as I started to grow up, I really struggled. My parents sought out lots of different interventions to try to help me. I spent time in hospital, at wilderness therapy and in a therapeutic boarding school. I have overcome my challenges. I am by no means healed or in any sort of final stage of healing, but I’m here to share some of my perspective and my story, and hopefully it’s of use and help to some of you.

Biancolli: Thank you for being here. Morna, would you like to introduce yourself?

Morna Murray: My name is Morna and I work in Providence, Rhode Island. I’m an attorney and I run a federally funded legal agency for people with disabilities, but I’m really here as a mom today and very humbled, frankly, to be here as a mother. What I have to share is about what my son has suffered. It’s not about me, and I hope that what I share today can help other parents as we support young people in our lives who we love and who may be experiencing distress.

I also want to say at the outset that while I work in the world of law and disabilities, I have never been comfortable with the terminology we use with disabilities and diagnoses. I hope that I do not offend anyone who does identify with certain terminology. I defer to people who experience differences themselves as to what language they prefer. But in our family, I have found that labels in general have been stigmatizing and unhelpful, and frankly, just inaccurate at times.

I came to this world after many years of searching for answers, not finding them, and having many people weigh in about my son’s atypical development. He has been diagnosed as having autism spectrum disorder, bipolar disorder, mood disorder, and generalized anxiety disorder, and I can’t say that any of those labels have ever really been helpful or really describe him.

I have learned a lot and I am very grateful that he now has a psychiatrist who does not believe in labels when working with him. I think more than anything over the years I’ve learned the value and necessity of humility, which my son’s psychiatrist defines as not having all the answers, a definition I really like.

Biancolli: Thank you so much for being here. I just want to add that I think it’s so important, the combination of people that we have participating in this event. Ciara, hearing your introduction—and we’re going to hear more from your story, and your experiences as an adolescent—then moving to Morna, your story, and what people need to hear from your story, what people need to know as a mother. Then we also have Sami, and he has the perspective of psychiatry. Sami, could you introduce yourself? Let us know what we should know about your work.

Sami Timimi: Thank you so much for inviting me to be part of this panel. I very much echo what has been said so far. I’m a Child and Adolescent Psychiatrist and I work in a little city in the UK called Lincoln. I’ve worked in the UK all my professional life and I’ve been a psychiatrist since 1989, so I’ve got a few years behind me.

One of the things that happened during my psychiatry training is that I began to be concerned about the claims for this model and that model, and for the treatments that we were using, which I could see from my practice seemed to be better at creating patients than alleviating people’s suffering.

It started me on a journey to find out about literature that just wasn’t talked about in the training that I was receiving. Most of my academic life has been spent thinking about the assumptions that we have. Where it’s led me is to an understanding that what we call diagnosis in psychiatry isn’t really diagnosis. It actually functions more as a commercial brand. The so-called science that we have behind what we call psychiatric knowledge is so lacking, and the outcomes from current mainstream services are so poor that it has led me to question why that is. What’s the root of this?

In my later years, I got around to thinking about the politics of all of this. What does it mean that we have financialized emotional lives? What does it mean that we’ve developed a system of mental health care that I call a McDonaldized system? One of the things that orientates my practice these days is the notion that we need to rehabilitate our emotions. I think the way we practice is we put our emotions in the category of things that are dangerous to us and things we should be suspicious of, and things that need to be controlled. I don’t think this is a system that sets out to harm people, but accidentally what I think it does is it sets you potentially on a course of an ongoing struggle with parts of you that you perceive to be abnormal in some way. Rather than getting meaning from your experiences, your emotional experiences just become meaningless torture.

Biancolli: Thank all of you for your introductions. Let’s dive into the questions for each of you so we can hear a little bit more about your perspectives and your personal stories.

Coming back to Ciara, I think we’d all like to hear a little more about your backstory as a “troubled teen” in crisis and what happened. I know you touched on this at the outset, but if you could expand on it a little bit and talk about your journey and the impact of what happened to you on your parents, to the extent that you want to talk about that. What pieces of your backstory were formative and what were your moments when you thought you could find another way?

Fanlo: My journey in the mental health system started when I was pretty young. I was eight when I first went to therapy. I was really sad and anxious as a child, and I struggled to make friends. I think my parents thought that that was abnormal, that I was going through something that I shouldn’t be going through or I was not developing in the way that I was supposed to be developing. I started going to therapy at eight, I started self-harming when I was 10, and I started taking meds when I was 12.

When I was younger, I just felt this horrible feeling of aloneness and I didn’t know how to make sense of that because I was so young. The self-harm started because I felt this urge to make sense of the way that I was feeling or make sense of the pain, and I wanted to make sense of the pain with more pain. I just did not know what was going on inside me. I think that was the first time I started feeling like I had something fundamentally wrong with me that wasn’t wrong with other kids, that I was always going to feel that way and that I had been born broken.

For a few years when I was younger, I was able to keep it together. I learned how to just put on a brave face and keep things under wraps, but when I got to high school it just completely fell apart. I just had what felt like a permanent pain in my heart. I was so sad. I felt like I was sad all the time and I filled up my head with these narratives that I’m not lovable, I’m not wanted, I’m not good enough, and I totally amplified those stories in my head.

I was just always running through these painful stories that had no purpose or had no point to them. There was no clarity or resolution in them. I was just beating myself over the head with these narratives and I felt unmoored, and like I didn’t belong anywhere. So because I was in so much pain I was like I’m going to do anything that I can to just try and dull how painful this experience is.

Maybe when I was younger and I was feeling sad and blue, my parents could have had a different approach to seeking medication for that. But when I was in high school I was cutting myself, I was running away, I wasn’t going to school, I was fighting with my parents constantly and I was making suicide attempts. I was going from one intense experience to another. I think the best way to say this is that I didn’t have this sense of internal coherence or direction. I would feel overwhelmed, and I would do something to kind of press the exit button and get out of the overwhelmed state. I would tell my parents a lie and run away from home or something. Then I’d come back and there would be all this drama and all this chaos from that. I would do something that was also intense to try and mitigate that experience like cutting myself or running away. Again, it was just like these constant cycles of self-destruction and dysfunction.

I was doing talk therapy and meds at home for many years. I took tons of different medications, and I went to many different therapists and did DBT, CBT, EMDR and neurofeedback, and nothing was changing. I still felt so wrong and broken inside. I went to a psychiatric hospital, and I was there for six weeks and I feel like I learned ways to cope with the pain there better. For example, I learned if I’m having a panic attack I can put my head in ice water. But I wasn’t getting to the root of why I was having panic attacks all the time. What was happening in my ecosystem in my internal emotional landscape making me feel this way so much of the time?

When I came back home from the hospital, I was on a home contract, which is a pretty standard practice for teens to go into residential. You agree to a series of conditions to be allowed to come home. I came home and nothing had changed and I was returned to all the same systems that I had left. It was only a matter of time before I was spiraling again.

Then my mom found a wilderness therapy program, and at that point, she had an inkling that she wanted something outside the medical model. She wanted something more natural and holistic. Wilderness therapy programs are far from perfect. I did feel very violated there and angry a lot, but wilderness and nature as a setting, as a container for therapeutic or personal work, is phenomenal.

You were asking about moments where I felt that something could maybe be different or that there could be another way, and that was the first time that I really felt there was another way to understand my struggles. That there was another way to relate to my sadness. That it wasn’t actually pathological, or it wasn’t a sign that I was broken, it was actually a feature of being a human. It was something that I needed to be present with and witness to and have kindness towards and curiosity towards.

For those of you who aren’t familiar with wilderness therapy, it’s backpacking, and I was in the woods for three months and away from devices and social media and all of that stuff. That was an essential experience for me—to be in touch with the earth and with my soul. That was a pivotal moment for me.

Then everyone goes somewhere after the wilderness therapy. Teens who are in this industry go to many programs. I went to a therapeutic boarding school after the wilderness, and that was a very intense environment. There’s a well-documented link between many residential programs and a cult called Synanon. So my school was one of the many that were based on the practices and methodology of a cult. It was a brutal place to be, and I was supposed to be there for two years. I ran away after about nine months, it was more an act of desperation. I didn’t know at that point what would work for me, but I knew what wouldn’t. I knew that it wasn’t what I was experiencing in that school.

I think that the seeds for that intuition of not knowing were laid from my time in nature, which again, I want to caveat by saying I had a powerful experience because of the nature element. I know that there are many people who have horrifically traumatic experiences in wilderness therapy. But I sort of left. I ran away from this whole paradigm of treatment because even though at that point I didn’t have the answers, I just felt so strongly that that wasn’t the way that I was going to heal. That kind of pathologization and the brutality and the criticism of it was not supportive to me feeling like a whole and healthy and functioning human.

Biancolli: I read your piece for the Guardian about your wilderness experience. What I gathered was that you almost had to reform your relationship with yourself as well as your family in some ways. Could you talk a little bit about what helped you and how those experiences inform the work you now do as a mental health coach and mentor for teens?

Fanlo: Yes, as Amy mentioned, I now work supporting teens and their families through the struggle. When people have asked me what helped me heal when I finally left the medical mental health model, I say that it was by finding people who inspired me. I went out in the world and I looked for people who had joy and who had integrity and who had passion and I admired, and I put myself in their orbit so that I could learn from them and their wisdom.

What was so hard for me when I was younger was that I had a very narrow view of the world. I was only 15-16 years old, so I didn’t have access to many adults besides my parents, the friends of my parents and the kids at my school. I felt like I was starving for real connection with people and wanting to know other ways of—as we’ve talked about—just relating to the human experience.

When I was an adult I went and tried to find that. I just tried to find people who I could learn from. I’ll say that I was functioning for a long time before I healed. To be honest, my time at that school was so horrific I was like, I cannot go back there. I will do whatever I have to do to not fall that far again. Then the other part of that was wilderness, again, an imperfect program, but adults always say to teenagers it gets better, you’re not always going to feel this way. But to me at that age, I was like, I don’t know what you’re talking about. To my memory, I’ve always felt this way, and I don’t believe that I can feel any differently. I don’t have any other reference point than this.

Even though it was complex, I did feel very differently after spending three months in the woods. That was a data point for me, like, I can feel different. Even though I don’t know how yet, I don’t know when I will, I know that I can feel differently. That knowledge that there was more possible and more available was fundamental for me. Then meeting people who were embodying that was also fundamental for me. Changing how I thought about these experiences. I think that how you choose to identify with an experience is more critical than the experience itself. I chose to see these experiences as more like initiations, but there were spiritual requirements of what I was supposed to go through to remember that I was whole and come back to who I was, and not as something that made me broken.

When I am working with teens and relating to them, there are many tools and frameworks that I can share with them. But I think the most important is being someone who they can see as not so different from them. When I think of how I would love any sort of therapeutic or healing offerings to be for people it’s drawing on the idea of ancestry, and going to the elders or the people who have gone before us, and coming back to this idea of community and learning from each other.

I tried to be someone like that. Someone who can relate to them and just help them feel that they’re not alone in what they’re feeling and that they’re going to be okay in the end, even if it doesn’t feel that way right now.

Biancolli: That’s wonderful. Because you have gone through similar experiences, your relationship is kind of like a peer, but with expertise.

Morna, if you can tell us a bit more about what happened to your son and his crisis—what he went through as a child and a young adult, and his journey since? Also, how that affected you as his mother, how you were treated, how you felt, and whether you were heard. I think we’d all benefit from what you have to say.

Murray: Thanks, Amy. And Ciara, thank you, that was so powerful. I resonated with so much of what you said. My son had developmental differences. He met his developmental milestones, but it was late. He was born in the early 90s, which is significant, because at that time in the United States, at least, it seems like half the kids in schools were on psychiatric medications or being recommended that they take Ritalin or some other medication.

Another factor that’s important in my son’s story is that his father and I are divorced. We divorced when he was five, but we are on very different ends of the psychiatric medication spectrum, which made life difficult for making decisions. However, given the fact that he has some difficulty with learning and he experienced a lot of social anxiety and anxiety in general, as soon as he entered school, we started receiving recommendations for him to be evaluated and medicated. There was a lot of pressure to medicate him from kindergarten on, which I resisted.

Let me also say in this story that I am the person who resisted in this story of ours. I’m not painting myself as some kind of hero. I didn’t know what I was doing most of the time. I was going on blind instinct. Also, I was raised to question things, and I wasn’t getting answers to the questions that I was asking. I think that the position that his father and other professionals took, though I’m not criticizing them, it’s much more mainstream, it’s much more typical. But I didn’t accept the answers that people were giving us.

In any case, fast forward to when he was 13, his psychiatrist prescribed Zoloft for him, which is an SSRI. My son at the time was underweight, small for his age, very gentle, and just the sweetest kid in the world. He started taking Zoloft, and for about two weeks he had a pretty good reaction to it, and then suddenly the bottom fell out. Within a couple of days, he wasn’t sleeping and he was becoming irritable. I called his psychiatrist, and she said just stick with it.

Then it became, like, overnight the world turned upside down. He couldn’t sleep. He went into what I have come to understand is a full-blown state of manic agitation. He was a completely different child. It was the greatest shock I’ve ever experienced. It was heartbreaking to witness and be present with him in the state that he was in, the suffering that he was experiencing.

I called his psychiatrist and she said to discontinue the Zoloft and to start him on Zyprexa, an antipsychotic. Again, I was lost. I was going to do whatever she told me to do, thinking that that was the way to help him stop this ungodly suffering that he was experiencing. My perception was that Zyprexa made him worse, which I reported to her and she said that was impossible. I have since learned that you can have medication-induced mania, but that was not something that I had found back then and certainly not something that a psychiatrist believed.

By the grace of God, I had some instinct that going to the hospital was not going to be a good thing, and I resisted him being hospitalized. I was lucky to have an employer who was very understanding and allowed me to take leave. I just stayed present to him during this episode, which lasted about two weeks. I did things to keep his environment calm and hoped that this extreme state of agitation would pass. I figured that it would pass and somehow we would go back to some state of normalcy. But that’s not what happened.

Once he was not agitated any longer and was on the antipsychotics, that led to an immediate diagnosis of bipolar disorder, which I questioned, as I didn’t understand—since he hadn’t had symptoms like this before. I was told by a psychiatrist that people with bipolar disorder often have manic reactions to SSRIs and that was the basis for the diagnosis. I was completely alone in questioning this, which was very difficult and somewhat crazy-making.

Again, this is not to criticize people who were acting probably with very good intentions. But it was crazy-making to see these kinds of decisions being made almost overnight about this child who had never experienced anything but anxiety up to this point and was highly sensitive to just about everything in his environment, including allergens, foods, and fabrics. It was very difficult. It started me into a phase of asking questions, not getting answers, being considered naive and argumentative, and being labeled anti-medication, when actually I’m not anti-medication.

As my son’s medications grew to address side effects—and I know this story is very typical for people now—he came to be on five and six psychiatric medications at the same time, which I questioned. I questioned the interaction of the medications. I was always told that they were perfectly safe, that they had been tested, and that anything that was going on with him was not due to medications but was due to the old chemical imbalance mental illness.

Maybe I should just stop there. That was his significant crisis that started us down the road of medications. He then went through a subsequent crisis as a young adult which led to a lot of good things, but it was very bad for a period of time as well.

Biancolli: Unfortunately, listening to this I know there are many, many people who can relate, and it’s not an unusual story that you’re telling. If you could maybe say what helped—and what can you say to other parents who are going through something similar?—that would maybe give a spark of light.

Murray: Yeah, I mean, it’s dark in this world many times, and I want to acknowledge that, but I have found help and I have found hope and support. He ended up in a setting that was geared around independent living skills and was at a lower level of medication than he had been in years—just about six years ago, at the age of 24. He changed the medication and had a negative reaction again, which led to a flood of medications again, and he ended up hospitalized. That is when I learned, you would think I would have known this by now, that going into the hospital you lose all control over everything. That prompted me to start looking around and saying this just can’t work, this isn’t helping him and is hurting him. The stuff that’s happening with him is creating the same symptoms that we were purporting to treat.

I started reaching out to people and I read Anatomy of an Epidemic. I had never heard of this before and started reaching out to authors who I will say were, without fail, kind, compassionate, and accessible, whereas I had difficulty reaching my son’s psychiatrist. I found that I could email authors of books, and they would respond to me within a day. I just started educating myself honestly and looking for alternatives. Knowing that as a parent, even being a person who worked in this field, you are not taken seriously by our psychiatric system. I know that there are people who do listen, so I’m not making a sweeping generalization. But as a whole, it is a patriarchal system that is not designed to respond to parents, particularly mothers.

I always found it curious that mostly male psychiatrists would label mothers as hysterical when their children were in crisis as if we were not supposed to be upset when our children are in crisis. But I did find providers, I found other parents, and I found people who could help and who could speak that language more than I could.

I learned to be factual and to be very non-emotional when dealing with people in the psychiatric system. I learned the value of keeping my son at home, not involved in any institutional setting, if he was experiencing any kind of semi-crisis. I will say too on a personal level, staying spiritually grounded, taking care of myself, and listening to my instincts—these are all things I learned throughout this process of being of the greatest support to my son and connecting with other parents.

I think that the more that we connect [the better], and the more that we talk about this, and the more that we push back on the fact that treating suffering like it’s some kind of pathological disease is not helping anyone at all. Parents are part of this, too, a big part of this. I don’t think parents want to make mistakes, but we do. It’s very difficult to stand alone in this environment, and so I do think that finding support whenever you can [is important].

I noticed there was a question in the chat earlier: How do you find a psychiatrist who doesn’t use labels? It takes a lot of looking. I started through Mad in America’s resources and just called and called and called until I found someone who is wonderful. You have to not give up. I guess that’s the theme of what I’ve learned.

Biancolli: Not give up, wow. That’s it in a nutshell. Unfortunately, another piece of it that is nearly universal is the way parents aren’t heard. That’s so important, the element of being heard, wanting to be heard, and having to adjust your own emotions to be heard. Thank you so much.

We’re going to move on to Sami now. If you could tell us a little bit about how you came to this place professionally. I’m just curious why you became a child and adolescent psychiatrist to begin with. I know you also touch on that in your book, Insane Medicine. But if you could tell people what you saw that brought you to your critical psychiatry perspective. You also talk in your book about the McDonaldized system and the branding. What did you see back then?

Timimi: When you’re telling any story, there is a choice about when you start the clock. I could start the clock by going right back to my childhood. I grew up in Iraq, as my father is Iraqi and my mother is English. I had to leave when I was 14 because of a deteriorating political situation. I came with my older brother and we each stayed in different bits of the extended family in England while the rest of the family was still in Iraq. There was that kind of culture shock and the beginning of understanding that there are different ways of viewing the world that make perfect sense. Different people in different contexts.

I also had parts of my family who were very religious and parts of my family who were very political, and they disagreed with each other. The political part felt that the religious part was taking them down the wrong line, and vice versa. I think from my growing-up years I’ve perhaps had some training in being able to look at belief systems and question who has the truth. During my training in psychiatry and then in child psychiatry, that was one of the things that I kept trying to find: What is the basis for these things that were being taught?

I remember one of the moments that really got me started on this critical journey was when I first went into child psychiatry. My first job in child psychiatry was in 1992, and in many ways, I consider myself a traditional child psychiatrist, because where I worked was predominantly systemic in its way of thinking. It was understood that children live in contexts because a lot of the decisions in their lives are not made by them, but by the people in various caring relationships to them. But also it understood that children are developing. The idea that things are always in motion and changing, rather than the idea of something static, was also part of the way we practised. In my first job in child psychiatry, we didn’t use any diagnosis, basically. The young people who presented to us were more or less categorized, if they were at all, by their presenting problem. It could be behavior problems, it could be self-harm or suicidal ideation. So in those days we just didn’t use those concepts.

Then, like most things that happen in America, eventually ideas start crossing over the pond, as we call it. ADHD was beginning to grow as a concept. I was working with a consultant in my latter training years where it was beginning to be talked about in the UK. This is the mid-90s. He said he wanted to do a project on ADHD amongst the local population because we were working in a part of London that had quite a sizable ethnic minority population. He asked me if I would join him and I did. I did all the background research looking at various papers and the history and so on. The thing that I just couldn’t get my head around was what is ADHD. Surely, it’s just not those behaviors of attention deficit, hyperactivity and impulsivity—and of course, that’s all it was. I couldn’t get a sense of what we meant by ADHD. That kind of started me on that journey of questioning.

It was very different to much of the rest of medicine, but not all of the rest of medicine, because you know what diabetes is, and there is what you might consider an empirical anchor, something you can measure. Diabetes is defined as blood sugar that’s too high, and you have a way of measuring that. Now, there are all sorts of debates about where the cutoff is, when to use diet and what the complicating factors are, and what might be the secondary causes of raised blood sugar. But we know what sort of thing diabetes is. The more I practiced in psychiatry, the more I realized that we don’t even know what sort of thing we’re talking about here. What we’re calling diagnoses are just descriptions. They don’t provide a function of answering that “why” question, not in the same way that you find in much of but not all of the rest of medicine.

I have to say that I feel very humbled by listening to Ciara and Morna, and I think they really explained the consequences for real people in their real lives of carrying on with believing that what we have is a diagnostic system. In other words, when you diagnose someone with ADHD or depression or bipolar disorder, you’ve said the reason for you having these experiences is because you have this condition. So we use it as if it’s a diagnosis, as if it has explanatory power, but it doesn’t. Description can’t cause itself. You can’t say low mood is caused by depression, in the same way that you can’t say the pain in my head is caused by a headache. The description is just another way of saying the same thing.

What then happens is how we then end up in the situation that Morna was in with her son, and Ciara was in, where you’re chasing this idea that there’s something wrong in you that requires you to keep putting new diagnoses and new treatments. I guess I came to realize that all the treatments that we provide, therapy as well as medication, when it’s done within the framework of diagnosis, they are better at creating long-term patients—and all the evidence says that.

Biancolli: What you’re saying is you’re affirming the stories that we just heard from your perspective as a psychiatrist, what you’ve seen in terms of the harms and the failures of the system. My second question for you is: When a parent with a child in crisis comes to you, what can you tell them that actually helps? What have you learned from your practice that actually helps? What do you say to them? How should they support their kids?

Timimi: Well, I like to see young people with their parents and I like them to be involved in those conversations. Of course, there isn’t a formula, because in some ways that’s the problem with diagnosis, with medication, and with most of the therapies that we used—they seem to imagine that there is a formula that you follow. But I do have a few principles that I try to keep in mind in my work. I think one of the ones that has become most important to me is that I feel in a way that there’s never been a generation as pathologized as the current generation. There is something awful about having created a system that locates a disorder, a dysfunction, a dysregulation, a pathology, a disease that locates the nature of the problem that you’re experiencing as being in yourself or in your child in some way.

The thing that I always try to maintain is that there is nothing wrong with you, there is nothing wrong in you. You do not have a disease, you do not have a dysfunction, your emotions are not dysregulated.

This goes back many years. I remember having this conversation with somebody who I’d been seeing for a good couple of years, and we tried all sorts of things. Then one day she was coming up towards the time where we would have to think about discharging her from our young person’s service. She said to me something along the lines that she’s never going to get rid of whatever this is inside of her. [It’s]There’s always going to be there, and she’s sort of given up hope.

It kind of spurred us on to having a conversation about what does she mean. It was then that I began to realize just how powerful it is when you construct your experience as being the result of something that she was labeling as a mental illness. She had labeled her experience as being a mental illness. Even in the times that she was feeling better, it was a bit like a shadow at the back of her mind that was always waiting to pounce, and that she couldn’t get rid of.

After that conversation, we only had a few more sessions. She began to realize that instead of fighting or feeling that she’s in some sort of ongoing struggle and having to suppress part of her, or having to try and find a way to control or get rid of it, that it’s about learning to live alongside [it]—because there’s nothing wrong in there. Listening to Ciara, I was reminded of so many stories I’ve heard like that. This is the bit that I find hard to predict. As long as you keep in mind that there’s nothing wrong with the person, there often comes a moment where the young person starts to click that this is not something that they should be trying to find a cure for. This is not something that they need to find a way to control or suppress, or even to express. It’s not about catharsis. It’s not about suppressing. It’s about learning, to just be with the way that you are.

For me, a lot of it is now about patience, and about keeping the idea that that opportunity will come. I don’t know how it will come. I don’t know when it will come. The young people I see, they’re bright, they’re creative, and they’re empathic. Even stories of suffering, I think, as well, we get too caught up with the trauma aspect of suffering understandably. But stories of suffering are also stories of survival. It’s being able to see that the person in front of you is more than just the problem that they’re coming in with.

Biancolli: The classic framing of questions is what happened to you” versus “what’s wrong with you.” You mentioned young people grappling with this idea that they have a lifelong illness, when in fact it’s just life. As someone just said in the chat, “I’m a human, not a pathology.”

But a couple of follow-up questions I have for you all—and you can just jump in with answers. One is: How important is listening and being heard? That’s been one of the recurring themes as a parent and as a teen. How important is that from each of your perspectives?

Then the other question that I’d like to hear your thoughts on is: How should the system change? How can it change in some sort of harm reduction way, in which practice can change?

Timimi: In terms of being heard,  I might be slightly controversial here, because it’s a kind of a banal question. All doctors imagine that they’re good at listening and observing. To me, it is: What is the framework that we have in our mind when we listen to people? Because the questions we ask, I think, are probably just as important as the answers that we hear. I just wanted to sort of complicate that a little bit more, because we need to listen but we also need to think about how the questions that we ask are framed.

I find sometimes that I can be listening to a flow, but I have certain points where I want to interrupt because I want to see if the conversation can move in a different direction. Or see if rather than talking to me, you are talking to your son or your daughter. Maybe you should be having that conversation with them and I can listen to that. I think there is something about the framework we have when we’re listening.

In terms of services, to me, there are all sorts of reformist things that we can do. But I’m personally somebody who’s looking forward to the time that we have a paradigm shift. For me, the paradigm shift is not to do with medication, it’s not to do with therapy, it’s to do with diagnosis. I think we have to understand that what we have is not diagnosis, and we have to drop the language and all the concepts attached to diagnosis and services being designed around an idea of diagnosis.

Biancolli: Thoughts on that, Ciara or Morna?

Murray: I was going to say something about being heard. It’s interesting because I think as mothers—and I’m not discounting fathers in this, but mothers do play a different type of role sometimes. If you get to a provider who appears to be listening to you, you unleash an entire lifetime of experiences often, and that can be a turn-off, I’m sure, to many providers. There is a pent-upness to wanting to be heard because you feel your child’s suffering so acutely and you want it to stop, or you want to provide something that is at least helpful. I guess I see it as almost being seen and understood and creating an authentic connection.

I think the first time that I experienced that was one of the hugest releases of my life, and it was so powerful. You can’t fake that. When someone’s connecting with you and hearing you, you know it. I know from my son’s experience that he does too, so it’s significant.

Biancolli: Thank you.

Fanlo: I wanted to echo what Sami said about the questions and the frameworks, because I remember going to doctors and having them ask me to rate my suicidality on a scale. It would be like are you at 8.5, or you were 5, and there wouldn’t be a further question driving me to go into what was going on, questions that were oriented towards my soul or my heart.

I think in terms of how I would like to see the paradigm shift, speaking from the teenager’s perspective and the treatment programs that exist for teens, they often identify the teen as the designated patient, or they are like the black sheep, like they are the person in the family who’s the most outwardly dysfunctional. A lot of programs fail to see that someone is a product of the ecosystem that they’re living in. This is not at all to place blame on my family by any means, but to think about the kinds of communities and structures that someone is returning to or living in. Community and a sense of belonging and a sense of love in the home can be preventative against a lot of these conditions. I think just focusing on the integration part of people who do seek healing and care is really important.

Biancolli: I have a couple of questions that came from the Q&A box. Starting with you, Ciara. Was there a way that adults built their relationships with you that made a difference to you as an adolescent?

Fanlo: Yes. There were a lot of adults who I felt looked at me like something to be fixed. We’ve talked a lot about how I was slapped with so many diagnoses and felt very limited in our relationship, because they saw me as someone who was borderline, or they saw me as someone who had oppositional defiance disorder.

I think that there were other adults who approached me with curiosity about my experience and unconditional love. I think that unconditional love is not focusing on what’s going wrong, it’s like focusing on the beauty of what [they] can become. When someone is in pain, when someone is suicidal, do you just look at the pain that they’re having and do you just look at their behavior, or do you see the bigger picture? Do you see all their potential and all that they can become in the whole totality of who they are? There were adults who related to me that way, and they would see me like me beyond how I was behaving in that moment. Having the experience of being related to that way helped me feel safe with them and open to building rapport with them.

Biancolli: Oh, that’s wonderful. I should have mentioned before I asked this question, which is probably for Sami, but if anybody else wants to hop in that’s great. But I should reiterate that Mad in America can’t provide or sanction any particular medical advice, so just general themes. With that said, one of the people in the Q&A box asked, What about people like my grandson, who has violent thoughts, and is a compulsive liar? How do I teach him who he is?

Timimi: That’s not a question that is possible to answer. I don’t know this person, I don’t know the grandson. I don’t know the situation, don’t know the history. Don’t know his strengths. I kind of believe that every kid has something great about them whether we choose to see them or not, whether in our stress as parents or in our own communities. If we have things that are causing various types of stress, financial, marital, school-based, whatever it is, just as human beings, it becomes harder and harder for us to see things other than the things that worry us.

There’s that phrase that you come home and kick the cat. It’s that idea that when you’re feeling stressed, you’re going to take it out on those around you, so there’s going to be tension in the home. If you look at things more broadly and politically, we have societies where there is a huge amount of stress in all sorts of ways and a huge amount of alienation. These are sometimes not great environments that allow you to just accept children for the way they are.

Often children then grow up feeling that to have some sense of value, they have to be good at something, they have to do something. It’s what I call the ‘compare and compete culture’. There are all sorts of background things that I think make it harder for us to see what it was that we loved about this kid or what it was that was great about them. The only advice that I can give is to try and remember that every kid has within them something that makes them fantastic.

Biancolli: That sounds like it’s essential and deeply human advice, because isn’t that true of everyone? We are all working in different ways, and we all have sources of strength and beauty. Any other thoughts, Morna or Ciara, on that question, before I move on?

Murray: Just that Sami should be the psychiatrist for everyone in the world.

Biancolli: He’s probably going to be getting a lot of emails after this. So Morna, do you know of any community or organization working to change the narrative in the system? The person who asked the question says, “I am doing that on an individual basis and looking to team up with others.” I’m assuming they mean the psychiatric system, the mental health system, and medication as pertaining to youth.

Murray: I don’t know of any particular organization focused on that. I think there are lots of little efforts going on in terms of parents connecting. My organization is called the PNA and I know one of the PNAs, the Maryland group, has filed a class action lawsuit based on polypharmacy of kids in foster care. That’s the first time I’ve seen something like that happening. But this is not mainstream stuff. I have disagreements within my own family and it can be difficult to make progress. Unfortunately, as Sami was describing—and I think we’re all saying, in a way, how isolationist all of this can be and how alienating this kind of treatment is. A lot of us are feeling very alone.

I guess I will also mention, and Ciara might be able to speak to this more pertinently, I do think that peer support is key for teens and young adults in crisis. Having peers to go to and then getting that sense that there’s nothing fundamentally wrong with me. I am not fundamentally flawed or pathological. I’m okay, you know? But no, I don’t know of a movement. I think we’re on the brink of it, I hope.

Biancolli: You’re right about the mainstream too—I mean, it’s very dominated by completely different narratives than what we’re discussing today. But for everyone, how can the current providers better educate families, children and other professionals to understand the adolescent transitional period not as pathology? Thoughts?

Timimi: I kind of wonder, how is it that we started this war on our emotions? Adolescence is a time, of course, when those emotions intensify and they start being accompanied by existential questions like, Who am I? Where do I fit in? What’s the meaning of being alive? What does the future hold? Who sees value in me? What do I look like to the rest of the world?

I often talk to families and young people because, sadly, we get a lot of people who come who are convinced, having Googled and spoken to others, that their young person has bipolar disorder or ADHD or something like that. I explain to people that adolescence is a bipolar disorder, get over it, you just have to accept. It’s a time when people feel the intensity of emotions.

There are very few things that I can predict. But the one thing that I can predict, which I say to people, is that you will change. That’s the only thing I can predict with certainty. Your interests may change, the music that you like might change, your idea of what you want to do in the future might change, the people you hang out with might change. That’s the one thing that I can predict with any certainty.

I don’t know how as a culture we got to this point where we’ve become so afraid of experiencing intense emotions that we started to label them as potentially problematic. Also there’s no mechanism in terms of what I would call ordinary and/or understandable ways of getting your head around them. You need an expert these days to help you understand what is wrong, and why is a person behaving like that. We’ve really narrowed the idea of what is expected and understood as ordinary. I don’t use the word normal, because the opposite of normal is abnormal. Whereas I always use the word ordinary, where extraordinary is the opposite. But we’ve narrowed this idea of what is within the realm of the acceptable and the ordinary.

In a lot of the work that I do now with young people and families, I tend to get as a consultant in the team the ones who’ve gotten stuck or have been through lots of therapy or have been in inpatient units, and they get sent out on all these medications. Most of the work that I do is essentially trying to deconstruct that and trying to help people appreciate that there’s actually nothing wrong with them, or rather nothing wrong in them.

Biancolli: I just keep writing down things that you’re saying just so I remember them. So many nuggets in there. Morna and Ciara, any thoughts on that?

Fanlo: I was thinking, when Sami was talking, that there does seem to be this prevalent obsession in the culture with things being good all the time, and being okay. This mentality that everything has to be happy and positive and just so. I think that we’ve forgotten that there are seasons to life and cycles to life. You wouldn’t expect an infant to be able to talk when they’re three months old. There are certain struggles that adolescents have that are developmentally appropriate, because when you are grappling with questions like where do I fit in, where do I belong, do I have value, and what is the meaning of me being here?—those can naturally stoke some feelings of anxiety, sadness, or existential dread. That doesn’t mean there’s anything wrong.

I think what’s so ironic is that when people try to fix the problem, it exacerbates the problem because it’s just endorsing the idea that there is a problem. If you have a child who is presenting with sadness, or anxiety about something at school, maybe that’s okay that they feel that way, instead of labeling it and then making it a huge thing. That’s going to be a thing, then, for years that they’re going to carry. It’s just a part of their journey, and it’s just part of what they’re experiencing. I really appreciate what Sami was saying about helping people unwind that assumption that something is wrong and, yes, like making every aspect of someone’s expression a pathology.

Biancolli: I was also struck that someone in the chat noted that prolonged grief disorder is now in the DSM. Grief, which has always had a little asterisk over it as the one extreme emotion you’re allowed to have because it makes perfect sense on a human level, has now been pathologized.

Murray: I wanted to just kind of add that people with developmental differences are often diagnosed with autism or whatever. I noticed somebody in the chat had said that they identify as neurodivergent, a term that I know my son likes. I think that’s even amplifying the adolescence changes that are going on. I love the chapter in your book, Sami, about Autism Spectrum Disorder. I’ve read that a few times now and it makes a lot of sense to me.

But the other thing that I’ve often questioned is the use of psychiatric medications for people with developmental differences and brains that are maybe wired differently—and how we know so little about that. But that on top of one of the questions that I used to ask all the time in my son’s teen years was, Isn’t this puberty, as well? All of those changes that are going on in adolescence are quite something, and calling it a war on adolescence I think is very accurate.

Biancolli: That’s one of the things I wrote down. There are just so many truths said so succinctly. Okay, this is another question. It seems that today parents have lost connection with their children due to millions of distractions and constant pressure to achieve some great thing. Are there constant unrealistic expectations for our children and from parents as well?

Murray: Yes, I mean, oh gosh, our poor kids are expected to be perfect and excel at every possible thing under the sun. Again, speaking as a parent now, I don’t even want to get into the history of mother blaming when it comes to developmental differences, but that is still alive and well. I am not here to drag that out, but it’s a barrier for young people. Forget about what it does to mothers, it cuts off that communication and just sort of puts somebody over there—as [if] their input is not valid.

Fanlo: Yes. I think there’s way too much expectation on teenagers. I think people say this all the time, but I can’t overemphasize its impact. I think that social media has started as a siren in the background. People are always comparing themselves and getting this huge barrage of information and being reminded of people’s successes all the time. There’s so much pressure to just be perfect in every way, like academically, physically, socially and so on.

I think that there is a lot of pressure on parents, because my parents didn’t necessarily have a lot of family nearby and people like aunts and uncles or grandparents that we could rely on during this time. It was so much pressure on them to be everything for me and figure everything out themselves, instead of having a broader family structure or broader communities where they didn’t have to hold everything on their own.

Timimi: I just want to echo what both Morna and Ciara are saying, because just as it’s become harder to be an ordinary kid, I think it’s harder to be an ordinary parent these days. These expectations on our kids—they transmit through to the parents. The whole mother-blaming stuff is not just in our culture, it’s also in our therapeutic cultures. It’s very widespread.

When things go well, mothers don’t get any praise for it. Occasionally fathers do for some reason. When things go badly it seems to fall on the mothers to be sorting it out. One of the things that I’ve come to think is important is that we also need to allow parents to be able to have a voice, to be listened to. One of the things I say to parents is that all good parents feel guilty most of the time about their kids. You worry, should I have done this? Should I have done that? Have I been too soft? Have I been too hard? Have I helped enough? Have I spoken to them enough? Am I close enough? There’s nothing I can do to change that. You’re going to feel guilty whatever I do, so we might as well just accept that and put that to one side. But we have created a culture where it’s just hard to be an ordinary parent and an ordinary kid.

Biancolli: I think on that note it is a good time to reflect on some of the themes of ordinary parent, ordinary kid. Sami, what you were saying earlier about the idea of ordinary as opposed to normal, abnormal: One of the things I keep hearing is that we should expand our understanding of what it means to be an ordinary kid or an ordinary teen.

Some other themes that have popped out were the importance of listening as we’re talking, and that there can be hope. I think these stories should be getting so much attention because personal stories convey such hope. Just the fact that Ciara, you’re here, and Morna, you’re here talking about your son—and just all of this, I think, conveys both the humanity of what people go through, the ordinariness, to use that term again, and also the hope. What other themes do you think emerged?

Murray: Well, I would say the critical need for non-pathologizing experts like Sami. I just can’t say enough about that. I know that we all know how rare he is, or someone like him. But that changes everything when someone like that is involved with your family. Suddenly everything is okay. It’s okay to breathe, and maybe things will be okay, and just changing that mentality leads to countless other changes in one’s interactions with your children, with your partner, and with your other children. I do think that is just so key, that acceptance and compassion and love for people.

Biancolli: This is the ultimate word, isn’t it? Love is acceptance.

Fanlo: Yeah, I would echo what Morna said about the importance of changing how we relate to and approach these pains that people have—changing the language, changing the mentality. I love what you said, Amy, about just expanding our idea of what is ordinary and seeing the humanity in people. I think people, when they get into these situations, can often feel like a patient or like an experiment. And how important and significant it is to relate to people as human beings and their struggles as core parts of their story, but not something that is a limitation for them.

Timimi: I would just add that the harder bit is how we find a way to change the public narrative. Because of course a lot of families do come, understandably, and young people, understandably, hoping or expecting that you’re going to make a diagnosis and have a specific prescribed treatment because that is what we are now teaching in the media and in the way our services work. That’s something that will need to change for us to be able to move towards greater acceptance and popularity of non-pathologizing services.

I’d just like to add what an honor it’s been to have shared a panel with Morna and Ciara, what wonderful people so willing to share your stories. I think is a very precious thing that you’re doing.

Murray: I would just echo thanks, and what an honor it’s been to be here with my co-panelists, and with you, Amy and Carina. Thank you so much. Thanks for the comments from everybody who’s been listening.

Fanlo: I’m so honored to be invited here to speak with two such phenomenal people and the whole Mad in America team for bringing us together—and to all of you who came to listen, and for all of your comments in the chat. Thank you so much for being here and for the work that you were doing in the world to be part of the change.

Biancolli: Just so powerful, hearing stories and observations. It offers a window into a new way forward for families, for individuals, for all of us humans. I want to thank all of you, Ciara Fanlo, Morna Murray and Sami Timimi, for agreeing to participate and for sharing your experiences and all that you’ve learned.

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MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.