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Autism Through Psychiatry’s Lens | The Neurodiverging Podcast

Today I am talking to Dawn Tree, who is a psychiatric nurse practitioner who has an adult autistic son and is also a late-diagnosed ADHDer. Dawn has been practicing in psychiatry for the past 30 years.

In today’s interview, we’re covering:

    • how the practice of psychiatry can help or harm autistic people
    • how medications are tested, used, and marketed to medical professionals
    • how to find a psychiatric professional for your individual needs

 

 

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Show Notes:


Guest Bio:

Dawn Tree is the mother of an autistic adult son, and also a psychiatric nurse practitioner. After years of suffering caused by incompetent psychiatric care for her son, she knew there must be a better way. Her mission became improving the quality of care in autism. She is also the podcast host of Atypical Parenting, where she focuses on positive change in the neurotypicals who provide support in the autism community via education, encouragement and empowerment of parents and loved ones.

 


About Neurodiverging

Neurodiverging is dedicated to helping neurodiverse folk find the resources we need to live better lives as individuals, and to further disability awareness and social justice efforts to improve all our lives as part of the larger, world community. If you’re interested in learning more, you can:


Autism Through Psychiatry’s Lens Transcriptions

Thanks to n. henderson for their work on this transcription!

DANIELLE: Hello everyone, and welcome back to the Neurodiverging podcast. My name is Danielle Sullivan, I am your host, thank you so much for joining us today. Today, I am talking to Dawn Tree, who is a psychiatric nurse practitioner who has an adult autistic son and is also a late-diagnosed ADHDer. Dawn got into nursing pretty young, when she found out her son was autistic and has been practicing in psychiatry for the past 30 years. She also has a podcast called “Atypical Parenting” which we’ll be talking about a bit.

Dawn and I have a really good conversation about how psychiatry as a whole, as a practice especially in the United States where we’re both from, treats autism, treats autistic people, what it does well, and where it really needs to improve. It’s a great conversation, I hope you’ll stick around and listen to it.

Before we get into that, I do just want to thank my patrons over at patreon.com/neurodiverging. Patreons give a couple bucks a month to support our ability to produce this podcast, to find guests, to do the editing as minimal as it is, and we could not do it without them. If you are getting something out of this podcast, you enjoy it, and maybe you’re looking for larger community around these issues, please consider joining us over at patreon.com/neurodiverging. Thank you so much to everybody who contributes, again, to allowing this podcast to grow and flourish.

As I said, today we’re interviewing Dawn Tree. Dawn is a psychiatric nurse professional, a late-identified ADHDer. We had a fantastic conversation, I could have talked to Dawn for another couple hours, honestly. First of all, we’re talking about psychiatry. How it treats autism, what it does well, what it doesn’t do well. We’re talking a lot about medication, which I know can be a touchy subject so a heads up about that.

As we talk about on the episode, Dawn and I have different opinions about medication. She’s a medical professional and I’m not, but I think everybody has to do their research and figure out what’s best for them. So, although we are not getting medical advice in this episode, and we do really encourage you to check in with your own mental health and medical team if you have questions about your own medication and your own mental health needs, it’s really also very good to understand how medication is produced, how doctors are educated or not about it, and what questions you might need to be asking your practitioners around your medication needs.

Dawn also gives some really, really fantastic advice for autistic individuals and others about how you can interview a psychiatrist, how you can find somebody who’s a really good fit for you and who’s going to listen to you as a patient and to work with you on your specific needs. So, thank you so much to Dawn for coming on the podcast today, and without further ado here’s our interview.

(laughs) Well welcome to the Neurodiverging podcast, Dawn, I’m so glad to see you again! Thanks for coming on!

DAWN: Thank you, it’s wonderful. This is so great, to be able to swap podcast episodes like this.

DANIELLE: It’s really nice to build a little bit of a rapport and be able to talk to slightly different audiences because I think we have some crossover but also some differences in people who tend to listen to us, so —

DAWN: Absolutely.

DANIELLE: Would you mind just to start us off and tell us a little bit about your background? Because you also work in the autism space, in the neurodiversity space, but from a very different lens I think.

DAWN: Yeah! So I have a little bit of a diverse background in this realm because I come at autism from a couple of different directions. So, when I was 19 I was a high school dropout and I had a son who became the joy of my life. He was very what we called strong-willed back then, and it wasn’t until later on that he was diagnosed with autism in his early teens. So, I was a 19-year-old single mother, I had dropped out of high school when I had this child who just was amazing. He was perfect and beautiful and precocious and all of the things, but everybody was like, “Oh my gosh, he’s, like, extra,” (laughs) right? Like he was the most strong-willed kid you ever wanted to meet and the traditional parenting strategies didn’t work.

And so I was just young and stupid and going along with things, and finally, he was diagnosed with autism, but in the midst of all that we had a lot of psychiatric treatment. We had a lot of bad psychiatric treatment.

DANIELLE: Yeah.

DAWN: And because of that, it pushed me into this career that I’m in, and so now I’m a psychiatric nurse practitioner. So, it’s sort of like the very short story of a long psycho-drama, but I saw the kind of care that was out there and it wasn’t very good and I knew I could do better, so now I’m a psychiatric nurse practitioner, I run a private practice, I treat all kinds of patients but also quite a few autistic folks. I also work at a school for autism, doing psychiatry there and it’s been (stammers) — It’s kind of become my calling —

DANIELLE: Yeah.

DAWN: …in a strange way.

DANIELLE: Yeah. I really resonate with the — From a different avenue of coming into the neurodiversity space. I was late-diagnosed when my son was diagnosed, and coming into the space and trying to get supports and finding that what was there was either not helpful or actively harmful in many cases, and wanting to then becoming kind of the calling of well how I can, with my certain skills which are not psychiatric medical skills but with what I have, how could I offer better resources for folks? And so I really felt like there was a good resonance and I’ve talked with lots of other clients and other podcast guests too who come in and are like, “This isn’t good enough,” (laugh), “We need to make this better!”

DAWN: Yeah!

DANIELLE: Yeah.

DAWN: So, in my practice, I do treat autistic people and I felt like I was making a difference there, but you’re right. Like, I know from when I was raising my son that there are very few supports out there. And today there’s so much more available, and yet there’s still not nearly enough, and so I talk about this on — I also have a podcast, as you know, just so that your audience knows it’s called “Atypical Parenting”, and I started it just because I need to reach — I wanted to share with a wider audience the things that I knew that I had learned over the years.

DANIELLE: Folks, I was a recent guest on Dawn’s podcast, and it’s a really good resource if you are in the space and, you know, are struggling and want more, so there’s a link below, so please check out Dawn’s podcast.

So one of the things that we have talked about on this podcast, Neurodiverging, kind of occasionally before, I think we had — We had Dr. Roy Grinker, Roy Richard Grinker, on last year, and he did this book that was like the study of the origin of psychiatry and through World War II and through PTSD, you know, and then how psychiatry sort of gelled together as a field of people studying all these disparate mental illnesses or neurotypes depending on how you frame all that. And it was a really interesting — And I know you haven’t listened to this podcast so I’m not trying to quiz you on it —

DAWN: (laughs)

DANIELLE: (laughs) But what really came together for me in reading his book and talking with him was this idea that psychiatry as a kind of institution is still relatively new and still very — What’s the word? Like, there’s lots of little bits —

DAWN: Subjective.

DANIELLE: Yeah! It’s very subjective and there’s lots of different ideas that are, I think for many of us as lay people — Or I can speak for myself as a layperson, my mother’s an ER nurse so I have I guess that little sideways view into what nursing looks like from her perspective, but that’s it. As a layperson, psychiatry always had this sort of gravitas and this sort of, like, “They know what to do, they know how to fix the problem.” These are, like, well-educated, evidence-based, all this kind of heft to it, I guess, as a medical framing, and then to come into it as a late-diagnosed autistic — And also talking to other podcast guests like I just mentioned and other things, and to recognize that actually maybe psychiatry is relatively new, still very subjective like you said, and sometimes less evidence-based than you would hope, perhaps?

So, I’m just really interested to talk to you today and get your perspective of what you’ve gone through and what you’ve learned. I guess to start off, could we talk about are there places within the institution of psychiatry that you’ve experienced that are actually supportive for autistic folks? Like, what does psychiatry do well?

DAWN: So, you know, in psychiatry autism is an interesting diagnosis, right? Because it’s neurologic, it’s not technically psychiatric —

DANIELLE: Yeah.

DAWN: But it does come along with some difficult psychiatric symptoms, right? Like incapacitating anxiety, social anxiety, and these things make it difficult to function. And so I think if you can find a provider who is autistic-friendly, who is familiar with autism then you can get relief from some of those symptoms. Which, honestly, like, massively can improve your quality of life —

DANIELLE: Yes.

DAWN: …if you’re an autistic person struggling, and so I think that’s what psychiatry does well. Now, but, I think the point you bring up is excellent because psychiatry is not like cardiology.

In cardiology we take an EKG. We see all the electrical impulses in your heart, we know exactly what it’s doing, where it’s beating, what’s happening with all of the blood as it shuffles around your heart, we know what medications will change whatever the problem is. In psychiatry, your diagnosis, your treatment plan is only as good as the person who’s listening to you. And so I’d say, like, number one the first thing you need to do when you go into the psychiatric realm is find a provider who’s going to listen to you. Because if you have a provider who thinks they just know everything they know nothing, right? Because the only thing they need to know is you.

And so I think, you know, there are good providers out there. I think if you can find one there are medications. The medications we have now are so much better than the medications even 20 years ago when I started as a nurse. You know — 30 years, God time flies.

DANIELLE: (laughs)

DAWN: So, in general psychiatry and neuroscience, there is like no better time than today (laughs softly) honestly, because the treatments we had in the past, they could range from barbaric to completely ineffective to toxic, right? Like, and now the treatments they’re much better. They’ve come up with drugs that have a lot fewer side effects, they’re not going to make you fat, lazy, and unable to want to have sex, right? Like, that’s the problem with all those meds in the past. It’s a good time to get a little bit of treatment if you can find a good provider.

DANIELLE: Yeah. I think one thing you’re sort of alluding to that I appreciate is that there’s still a lot of stigma around medication, right? Around any kind of medication, whether that’s ADHD meds, which have, what, 100 years of history behind them and are well-studied. Even my mother who is a very well-educated, doctorate-level nurse educator, we were talking about, for example, antipsychotic class medication which, unfortunately, was used a lot in the ER setting when she was in the ER 30 years ago, probably around the same, and how much those medications could have a negative or disastrous effect on patients to whom they were administered.

And I was saying when we’re talking about autistic folks who are, say, having a panic attack or a social anxiety episode, there are options for them that don’t include those heavy psychotic medications. But I think the awareness, even among the medical professional field, is maybe not as high. Everybody’s got their little pocket of their knowledge of what they work in —

DAWN: Yeah. Well, I think too when you’re dealing with autism, if you’re not familiar with autism, like, an agitated episode in autism or like an episode of emotional overwhelm, it’s pretty intense, right?

DANIELLE: Yes, mhm.

DAWN: So, if you’re not familiar with it and you see that happening you’re like, “Whoa, we better throw the heavy-duty stuff at them.” And in doing that you’re causing so much more harm than good, because not only do they not need that because this is just the way their body and system functions, but it’s going to cause problems because their nervous systems are so much more sensitive than other people’s.

You know, the first antipsychotics that were developed, the first generation ones like Thorazine and Haldol, we learned later on — Now, that’s years of administering high doses of these drugs to people, we now know that they’re neurotoxic. They kill brain cells! Right? The newer antipsychotics promote neurogenesis. And so that’s a perfect example of how far psychiatry has come.

DANIELLE: Yeah!

DAWN: So, you know, the medications today really — The topic of medications is a hard one for me —

DANIELLE: Oh, yeah.

DAWN: Because when I started practicing I really wanted to be holistic, because, honestly, giving my son medications was number one the hardest thing I ever did, one of the hardest things I’ve ever did, but also one of the stupidest things I ever did ’cause I did it on the advice of people who didn’t know what they were doing! So I think that, you know, for me the best option is no medication, right? Our bodies are designed to be okay, to fix themselves, to manage. But, that being said, there are some mental health symptoms, especially in autism that cause a lot of distress and that cause a lot of disruption in your ability to just simply live your life. So when that is the case medication is definitely the lesser of two evils in my mind.

DANIELLE: Yeah. Yeah. And as somebody who also has medicated children which is a really hard decision and must have been much more difficult when the meds that were available were (pauses) —

DAWN: Toxic (laughs).

DANIELLE: Toxic and also just newer —

DAWN: Oh, my gosh.

DANIELLE: ‘Cause as an evidence — I mean you can’t be evidence-based everything and there’s problems with evidence-based as well, but as somebody who sort of leans on can I find studies for this, how many people has this been tested on? You know, what kind of process did it go through? Choosing to medication, myself or a child, or to say to a client, “Have you talked to somebody about medication because this is not a coaching issue that you’re bringing in, this is something that needs other kinds of support or that might benefit from other kinds of support,” those decisions are really hard, because there’s, first of all, all the stigma, there’s all this history of medications harming people and especially people who are otherwise disempowered, right? Whether they’re autistic or of color or they’re children or whoever —

DAWN: Absolutely.

DANIELLE: So, there’s all this politics in it that makes the decision really difficult, but also just purely as a parent choosing whether to medicate a child, that is a hugely difficult decision and for me, it came down to function. And will this improve overall well-being for the kiddo?

DAWN: Exactly!

DANIELLE: Will their lives be happier? Will they be able to do the things they want to do more easily?

DAWN: Right, exactly.

DANIELLE: You know, versus any other kind of decision-making. But I think everybody has their sort of decision tree with that. That’s a really challenging —

DAWN: Hard. It’s so hard. It’s so hard.

DANIELLE: Yeah, yeah.

DAWN: You know, one thing that I didn’t understand when I was a young mother raising my son was, like you said at the beginning, I went into these psychiatric providers and I thought, “They’re the experts,” —

DANIELLE: Yeah.

DAWN: …they know what they’re doing,” (laughs softly) right? They’re giving me — And I would ask really, I thought, pretty intelligent questions. I was a nurse eventually as he was going through grade school and I had somewhat of an understanding, and they would give me really great responses. In hindsight, I now know that the drugs they were feeding my son, which I am complicit in, they didn’t know.

DANIELLE: Yeah.

DAWN: You know? I mean as a provider, I have a private practice, the office I’m in here today, I’ll have drug reps knock on my door, bring me coffee, chat me up, and tell me how wonderful their drug is. They will cajole me to use their drugs. So, a lot of times you’re using drugs as like, “Eh, let’s throw it against the wall and see what sticks,” right? Because all you know is what the drug rep told you and they are nothing but a salesperson, and new providers are always going to experiment, and their experimentation is going to be influenced by the drug representatives who come in to sell you the drugs.

So, you have to — I think that’s why it’s important to have a really experienced provider, number one, because they have to understand that about it! But number two, I don’t think you should ever give your kid a drug that hasn’t been around for a while. Ever. Ever.

DANIELLE: Yeah.

DAWN: If you have a drug that’s approved for use in children that’s your best bet because you know that that drug is tested specifically on children, and those trials are a lot more stringent as far as oversight goes than other trials. So, if you have a drug that is approved for use in children, it’s generally a pretty safe drug.

DANIELLE: Yeah, mhm. And I think for maybe folks who are listening who are not familiar with this process or who are thinking through it, what I think you’re alluding to is the fact that many providers will prescribe sort of sideways, right? So, this drug isn’t clinically tested or approved for this use, but we think it has — You can say this better than me ’cause you’re an actual medical provider (laughs).

DAWN: Yeah, so this is a really interesting topic that you bring up, is the idea of drug approvals, right, and off-label uses. If you’re a specialist in psychiatry, you should be really hip to the drugs, because there’s not that many and there’s not that many classes that you use. So, when you look at the drugs though you have classes that are all somewhat similar structurally and what they do in your body functionality. So, you’ll have — The only way drugs get approved for a certain indication, like autism or autistic-related irritability, we have a couple of drugs approved for that, the only way they get approved is if they do trials. Trials on children are really hard to do because the requirements are so hard to meet and recruitment is so hard, because who is gonna say, “Here’s my kid, experiment on them,” right?

DANIELLE: Yeah.

DAWN: Like, it’s not easy to find people to be in the study. And so, off-label prescribing is really a very common thing, and it’s not necessarily a bad thing. That’s what I do want people to understand.

DANIELLE: So, part of what I’m hearing is that there’s just — To be really reductive at you, is that it’s really hard (laughs) as a patient, so speaking as an autistic person, right? If I were having a psychiatric issue and wanted to go, like, find somebody to offer support, whether that’s medication or other intervention, what are some things that you would maybe recommend patients do? You mentioned finding somebody that you feel like is really listening to you, which I absolutely agree with whether you’re looking for a psychiatrist or therapist or any kind of professional, someone who hears you. Is there anything else that folks could do to sort of assess whether the relationship is supportive and whether the recommendations are reasonable ones, I guess, within the field?

DAWN: Yeah, that’s an excellent question, that’s an excellent question. Because you know I’ve had autistic patients come to me and then, you know, leave and other providers will tell them they’re psychotic, they’re schizophrenic, like all these things just because they don’t know. And it’s hard to know who to trust, right? There really isn’t a lot of specialty training in psychiatry for autism in particular, which I think is troublesome, ’cause it really is a very distinct specialty.

I think you want to look for somebody who has experience with autism, and that may be in their training or if they — That would be a good question to ask, “Do you treat other autistic people?” You know? So that you get a sense for their understanding or their history with it. The other thing I’d say is you really need to listen to what they’re saying, because if they’re treating autism like any other mental health issue then we have a problem. Because people with autism, their nervous systems do not respond to the medications in the same way, generally, so, you really need to ask the provider. It’s kind of like dating: you have to do interviews, unfortunately.

It’s time-consuming, it’s frustrating, it’s a huge, huge hassle, but it’s really the only way, I think. Because you can find somebody with the best reviews or the recommendations or whatever and you get in there and you’re like, “Oh, this is terrible.”

DANIELLE: (laughs) Yeah.

DAWN: So, number one, you want to make sure it’s a good fit. If you are the person looking for care or if your child is the one you need to care for, are they comfortable with the provider, right? Does the provider make them feel comfortable in their office space? Is it quiet, is it bright, is it dim, right? All these things, so you need a space that’s comfortable and you need a provider who’s willing to accommodate a little bit. You know, I remember going to offices with my son when was young and there were providers who were great — A couple, not very many, unfortunately, but there were also providers who were like, “(scoffs),” very dismissive, very rude, very unyielding when it came to things like him being overstimulated or the lights were too bright or, you know, any number of things.

So, you want to find somebody who’s going to accommodate you a little bit, and you want them to do that on their own (laughs softly), right? Like, you don’t want to have to have your kid have a meltdown for them to go, “Oh, I guess we can turn off the lights,” you know what I mean? You want somebody who’s going to have a little bit of forethought. If you find somebody you have to decide whether you can trust them or not. And I think if a provider is able to sit down with you, have a direct conversation with you, and say, “Hey, I’ve put together this plan. This is why I think this plan will work,” and takes the time to explain it to you. You know, I think sometimes you just have to take a leap of faith. I think the hard part is deciding and figuring out whether you can trust your provider or not.

DANIELLE: Mhm, yeah. And many of us, speaking from the autistic side, have had so many negative interactions with the medical system, you know, being taken to the ER for a meltdown, being put in psychiatric hold for a meltdown, those kinds of things, but even smaller, microtraumas I guess, like —

DAWN: Yeah, definitely!

DANIELLE: …having to go in the bright lights and the loud noise for every single doctor’s appointment since we were babies, you know, over time can really build up a lot of fear in interacting with the medical system, even if nothing, like, capital T Trauma has ever happened to you, a lot of us struggle, and so —

DAWN: Well, I think, you know, being autistic in a neurotypical society, honestly there are so many interactions every day and situations, I don’t know how you would get to adulthood without experiencing somewhat significant trauma.

DANIELLE: Yeah, I very much agree with that, yeah (laughs weakly). Yeah. And I think that’s a piece that I don’t see always recognized in the wider, not just psychiatry but sort of the helping field, the supporters fields whether that’s nursing, psychiatry, therapy, counseling services, I think that trauma is very under (pauses) —

DAWN: Yeah, underappreciated, absolutely.

DANIELLE: Under — Thank you! That, yeah —

DAWN: Yeah.

DANIELLE: Yeah.

DAWN: I think honestly if you are looking for a provider and you say to them, “Tell me what you do differently when you’re treating autistic patients,” if they say to you, “I just treat the symptoms, I don’t do anything different,” that’s kind of a red flag.

DANIELLE: Yeah.

DAWN: (speech overlapping with Danielle’s) You know what I mean?

DANIELLE: That’s a really good question.

DAWN: So, if a provider says, “Well, autism is tricky,” and they give you a few of the things that we need to be concerned about, I think then that’s a person you want to further explore a relationship with.

DANIELLE: Yeah, yeah. That’s a really good way to frame it, because you don’t want a sort of — I’m thinking of when you’re talking about race, right? There are the people who say that, “We’re color blind, we’re going to treat everybody the same,” and although it’s this sort of maybe well-meaning answer it really indicates, to me anyway, that this is somebody who is not very familiar with the different ways people of different races are treated —

DAWN: Right, right.

DANIELLE: And your, “Well I treat everyone autistic the same,” or, “I just treat the symptoms,” sort of reminds me or seems kind of analogous to that of we want to treat everyone as human first, but we also have to understand that people are coming with different backgrounds, with different needs and we need to be looking at them as individuals who are also part of a society (laughs) —

DAWN: Yeah.

DANIELLE: …where some people are more appreciated or more valued than others, even though we wish that weren’t the case.

DAWN: Yeah, absolutely. Absolutely.

DANIELLE: So, it’s a really good question to ask.

DAWN: And you have to remember in psychiatry that is what is taught. Basically, it’s like none of that matters, the underlying cause of a condition, especially when we’re talking about medicine. You know I come from a nursing background which is a little more holistic, but in medicine in general it’s about the symptom, right? We’re not looking at the underlying cause at all, and when you think about that with autism that totally is going to push all the considerations that need to be taken with autistic patients just pushing them out the window and focusing on the symptom and that’s not going to work, you know? It’s complex.

So, you do have to remember that that is what is taught in school, it’s what people learn, and it’s not appropriate, it’s not effective, it’s not going to help you in the long run or your autistic loved one.

DANIELLE: Do you know of any movement in psychiatry for practitioners to become more trauma-informed? ‘Cause what I sort of hear a little bit or what I noticed is that when you say, “Just treat the symptom,” most of my symptoms for example my psychiatric symptoms and also my, “autistic symptoms,” (laughs) —

DAWN: (laughs)

DANIELLE: …heavy quote-unquote, quote-unquote, “autistic symptoms” are a result of trauma in some way, right? Some of them are from other things but a lot of them are, just like you said, the world isn’t set up for me. I get overwhelmed, I get overstimulated, I process emotions differently —

DAWN: Right.

DANIELLE: Those kinds of things, and so I need practitioners or I will be served best, I guess, by practitioners who have some trauma-informed background, but I have no idea if that’s common — I know it’s becoming more common in coaching and in therapy and in counseling. (speech overlapping with Dawn’s) —

DAWN: I think there’s been —

DANIELLE: Is there any push to do that?

DAWN: I think there’s been a little bit of a push. I have noticed at the conferences that I’ve been to that there’s more modules about trauma-informed care, and so I think we’re all a little bit more aware of it. And this sort of is — I feel kind of conflicted saying this, but you need somebody who knows what they’re talking about, so (laughs softly). Like, if you’re a provider who has perfectly healthy mental health that’s awesome, I’m happy for you, but you’re not going to get it like somebody who struggles with their own anxiety or depression, right? Just like autism, if you don’t know anyone with autism, you haven’t been up close in person with them, you’ve only treated them as patients perhaps in passing, you don’t know what you don’t know, right?

So, in a sense, trauma is the same, because if you have a provider who has no idea what it feels like to live in PTSD or even acute trauma reaction, I don’t know how much help that provider’s going to provide.

DANIELLE: Yeah.

DAWN: You know? And that’s kind of an awful thing to say, right? Like, all these providers out there if you’ve lived a golden life God bless you because I don’t think there’s that many people out there who have, at the end of the day we all get something, right?

DANIELLE: Yeah.

DAWN: We all get some sort of stress, being human is hard, but, you know, I think that lends also to thinking about age and experience and wisdom and all of that, too.

DANIELLE: Yeah, yeah. Thank you, that’s really helpful. I want to ask you one more question if that’s okay, which is that you, several conversational beats ago, mentioned briefly that medication can impact autistic nervous systems differently or unexpectedly. I have had — Well, I have had personal experiences (laughs) of medication affecting me differently, and when I’ve tried to research it, again, studies are hard for many reasons and I haven’t found a lot of research on how even common medications affect autistic nervous systems differently, it’s just not something that’s very popular to study! So, I wondered if you had any resources or just any personal experiences that you could share for people listening. I’ve had so many people ask me if that’s like a, quote-unquote, “real thing or not,” and it’s hard to assess —

DAWN: Yeah.

DANIELLE: Yeah.

DAWN: So, number one, I did an episode with Dr. Sabooh Mubbashar who is pretty much the northeast expert. He is the medical director of the largest autism-related organization in Connecticut, he provides both inpatient and residential services for people, so we did an interview with him that was really interesting. People might want to check that out, but in general I will say that it makes perfect sense. That if you think about autism and you think how there’s so much sensory difficulty, right? You think about the way your nervous system functions, your brain is part of your nervous system, it’s all very sensitive, you know? And that holds true for medications. You often need lower doses, you need slower titrations.

Even with the perfect medicine, it might be a little rocky while your body adjusts, because when you’re using these psychiatric medicines it’s hitting receptors in your brain, your brain then has to accommodate that. So it has to up-regulate or down-regulate the neurochemicals that it’s producing, so you have to go really slow in autism and you have to (stammers) — You know, I mean you don’t want to crawl, right? You want to get to your goal eventually, I think that’s a tendency for people too like, oh, I don’t want to — I want to change it by a teeny little bit, like that’s not necessary, because you’re going to — No matter how much you change it, it’s a little bumpy. But you do need to go slow, and you do need to consider that the nervous system in an autistic person is going to be overwhelmed by medications more easily than other people.

DANIELLE: Mhm.

DAWN: And even though there’s like gene tests out now where we do swabs of people’s cheeks, and it tells us how the medications are metabolized in psychiatry, they can have perfectly normal metabolism and still have trouble with these medications. They’re much more prone to side effects, they’re much more prone to overstimulation. Like SSRIs for instance, SSRIs are supposed to calm you down, right? Like, they’re supposed to soothe that anxiety. When you put somebody with autism on an SSRI, if you start at too high a dose or escalate too quickly, you’re going to have big problems. It’s going to end up doing the opposite of what you want it to do, you know?

So, that’s just a really simple example of why we need to go really slow. And sometimes with autism the symptoms do not respond to traditional treatment, so you need to think outside of the box. That’s another good thing to think about as far as a provider: do they think outside of the box or do they just stick to the algorithm, right? ‘Cause, you know, there are some research studies that are looking at out-of-the-box options and some of them are tenable, some of them are not, but, sometimes you have to be a little creative.

DANIELLE: Yeah. Yeah.

DAWN: And what I find is most effective is I’m not, like, big on polypharmacy because like I said at the beginning I really would love if none of us were on any medications, that being said just so your audience knows, I’m on psychiatric medications for my own anxiety disorder so I understand this whole issue from front to back.

DANIELLE: (laughs softly)

DAWN: And I think in autism what I often do though is I take a little bit of this and a little bit of that and I bake my own cake, right? Like, I make my own recipe instead of just buying the box from the grocery store.

DANIELLE: Yeah.

DAWN: And that’s necessary sometimes.

DANIELLE: I think one thing that I wish practitioners asked more often, which maybe will help folks listening, is, like, what my goals are (laughs) for my own treatment. Because I think sometimes, you know, even with a practitioner I trust I come in and I say, “This is what’s going on with me,” and they’ll — Especially if they’re neurotypical, they’ll clock a bunch of things as quote-unquote, “problems,” that I don’t view as problems and I don’t really need them to be solved. But I’m really here for this, like, for, say, my anxiety’s high, I can’t sleep.

DAWN: You’re right! I think it’s important that we find out what the goals for treatment are, that we identify that. And I also think we have to be careful not to get too greedy (laughs softly), right? Like we see, a lot of times this happens that we start a patient on a medication, they start to do better, but they still have these residual symptoms, right? And we get greedy! We’re like, “Oh, it fixed it! Let’s increase the dose and fix it more!” and then before you know it everything goes to shit.

DANIELLE: Yeah, yeah.

DAWN: So, you have to be really careful to take the benefits, the improvements, and be grateful for them, and maybe inch up if you can. But sometimes you gotta realize like some of this shit it is just about being human.

DANIELLE: Yeah.

DAWN: You know? Because like I said, again, life is hard.

DANIELLE: Yeah. Yeah. And, you know, as a coach I’ll say that a lot of clients I see, you know, we’re working on stuff like emotional regulation strategies for example as a kind of easy one, it applies to a lot of different neurotypes where nervous systems are different, we have a lot of trauma, our emotional regulation is weird or different or just, you know, unexpected sometimes, and sure you can kind of attack that with psychiatric and maybe you should, so we’re always going to tell folks check in with your doctor and your mental health team first. But then if you kind of hit a wall with what the meds can do for you that might be a place where counseling or therapy or sometimes coaching can step in.

‘Cause we’re not medical practitioners, we’re not mental health practitioners, but we can help you develop meditation strategies, breathing strategies —

DAWN: Absolutely.

DANIELLE: …counting strategies, those kinds of things.

DAWN: Absolutely. I mean it would be a magical day, will be a magical day, when there’s a pill that we can say, “Here, this will fix all of your problems,” right?

DANIELLE: Wouldn’t that be lovely? Yeah.

DAWN: But in psychiatry at large that’s just now how it works. It just doesn’t. There’s no way — You’re just never going to be well if you don’t incorporate wellness strategies into your world, you know? If you don’t do a little bit of looking at yourself and figuring out the things that make you feel off, make you feel bad or yucky, right?

DANIELLE: Yeah.

DAWN: Like, if we just keep going through life exposing ourselves to all these things that jangle our nervous systems, make us feel uneasy, we’re never going to be well no matter what medication you’re given, you know?
DANIELLE: Yeah.

DAWN: So, I think you bring up a good point. Treatment in the psychiatric realm, it has to be holistic. We can’t just expect a pill, or even a collection of pills, even with the best provider, to fix your problems. It’s just not — It’s going to help. It’s going to help you have a handle on things so that you can behave and respond to stressors in a way that aligns with who you are as a human, but it’s not going to fix those problems.

DANIELLE: Yeah. Yeah. I would say that for me personally going on an SSRI made it possible for me to implement other solutions —

DAWN: Exactly, exactly, I think —

DANIELLE: …that I wouldn’t have been able to implement where I was. So, it didn’t fix it, but it did give me a big step up, right? In going up the stairs to better health or wellness.

DAWN: You know, I think a lot of people, they have this impression that medications are going to change who they are, “I don’t want to be different, or for the medications to change anything.” That’s actually not what happens. What I see happen when people are medicated properly is the medications just remove some of these really difficult boulders so that you can be yourself, because I know the person with anxiety and panic attacks is not — Their real self is not them curled up in the fetal position on the couch, right?

DANIELLE: Absolutely.

DAWN: That’s not their real self. Their real self is the person who’s doing the things they want to do. And so I think it’s important to look at the medications that way, as a helper, like you said. Not like the fixer, but as a helper to help you tap into your own internal resources.

DANIELLE: Yeah, yeah. I completely agree and I think that, again, from my non-medical perspective when I see a client who’s on a good set of meds or just from my family’s experience of me going on the SSRI and, you know, the children, the child’s medication process, it was a lot of sort of trying to clarify, right? Not to change who we are but to be able to see ourselves better by removing some of this extra —

DAWN: Exactly.

DANIELLE: …anxiety, stress, meltdown, emotional dysregulation —

DAWN: It’s kind of like putting on glasses, right?

DANIELLE: Yeah.

DAWN: Like, you wouldn’t be expected to navigate your home if you couldn’t see anything. So, medication is like putting on glasses: it allows you to tap into your own resources, you know?

DANIELLE: Yeah, absolutely agree. Thank you so much, Dawn. I really appreciate you coming on, that was an awesome conversation.

DAWN: You’re welcome.

DANIELLE: Can you tell folks a little bit more about where to find you and your podcast?

DAWN: Sure, yeah! So, I’m in a bit of a transition, my practice is closed at the moment so I’m not taking any more clients. I am working at a school, a residential school for autism, but I do have a website, it’s called Aurora Healthy Minds with an s. There’s information about the podcast there and also information, there’s some resources for local community stuff in my area here in New York.

DANIELLE: Awesome.

DAWN: But the podcast, “Atypical Parenting”, it’s a little bit different than most of the autism podcasts out there because it’s about the neurotypical people (laughs).

DANIELLE: Yeah.

DAWN: Right? As neurotypical as, you know, crazy me I am, but it’s us, honestly. Like, I hate to kind of say this because I spent a lot of years being blamed for my son’s struggle, but it is us, right? Like, as the neurotypical people, as the parents raising these amazing children, we need to change, we need to understand, we need to figure it out and not just take advice from anybody who has an opinion to offer, right? So, that’s what the podcast is about, it’s about us and changing us as parents, as caregivers, as support people for neurodivergent folks. So, that’s called “Atypical Parenting”, it’s not just for parents but that is the name I came up with and I’m sticking with it!

DANIELLE: I was invited by Dawn to be a guest and that’s how we met, and I went and listened to so many of them and they’re so good (laughs).

DAWN: There’s an excellent episode about the sibling perspective early on. My daughter did it with me, and she’s amazing.

DANIELLE: That’s so great! I’ll find it and link it for folks.

DAWN: Yeah. The quality is not so great, it was one of the earlier episodes we did, but the content is phenomenal.

DANIELLE: Yeah.

DAWN: So, thanks so much for having me, I appreciate it.

DANIELLE: Oh, thanks so much for being here!

Thank you so much for joining us on the Neurodiverging podcast today. I really hope you learned something from this interview today and I really hope it was helpful for you. If you did learn something and you’d like to support this podcast please check us out over on Patreon at patreon.com/neurodiverging. You can give a couple of bucks a month to support us and to get ad-free episode downloads, access to all of our community groups, group coaching, and a lot more.

Also, please check out the links below to find Dawn’s podcast “Atypical Parenting”, which as I said in the interview is a fantastic resource. There is also a transcript and more available on my website at neurodiverging.com. Thank you so much for being here with us today and please remember, we are all in this together.

 

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