Episode #81 Interview with Dr. William Carroll (Research on Women & ASD)

SUMMARY KEYWORDS
autism, sister, neurotypical, autistic, siblings, females, young lady, camouflaging, professionals, research, people, questions, masking, carroll, parents, data, present, georgia, collateral, diagnosed

00:04
Hey everybody, welcome back to another episode of the autism and action podcast. Today we have another very special guest for you. We have got Dr. William Carroll who is a licensed professional counselor in the state of Georgia. He earned his doctorate in his master's in professional counseling for Liberty University in 2012, and has been in private practice in Marietta, Georgia since that time, he enjoys outdoor activities including obstacle course races and kayaking around the lakes and rivers of North Georgia, originally from southern Georgia, will made his home in Tarte cartersville, Georgia in 2008, with his wife Shannon, and his three children, wills area of expertise is in the treatment of autism spectrum disorder using various techniques, including innovative approaches, such as Lego therapy is peace PhD dissertation is on the unique qualities associated with women who have ASD, autism spectrum disorder, as seen from the perspective of their adult sisters. Thank you so much for taking the time to be here. Dr. Carroll is so excited to have you on the show today.

01:12
So thanks for having me. I'm glad to be here.

01:15
Awesome. Well, we're really happy to have you on I wanted to dive right into some of the work you're doing, or the work that you just finished, because you're now Dr. Carol on and the female autism phenotype now is what your dissertation was on. Can you talk a little bit about what that means and what your research included?

01:34
Absolutely. So we believe that there is a unique phenotype for females with autism that they present distinctly different from males. Obviously, our diagnostic manual doesn't reflect this. So we're in that research stage, we are collecting data, we're presenting findings, we're getting stuff published. And the The hope is that the autism community and of course, the larger psychological community will recognize that girls with autism present distinctly different than guys, and this is important, this is mainly important in diagnosis and treatment. But it's also important in your research and our understanding of young ladies, one of the stats I was wanting to present you guys was that women are or even young ladies with autism have oftentimes are not immediately diagnosed, they're more likely to be diagnosed with something else, an eating disorder, depression, anxiety, just a host of other problems up to an including a personality disorder such as borderline. And that's concerning, because obviously treatment would be inappropriate for a young lady who in fact, has autism, and is being treated for borderline personality disorder.

02:45
Can you talk a little bit I'm curious, like, what the prevalence is maybe from a data perspective, how much more common is it to have these other these other things than it is maybe for their male autistic counterparts?

02:57
Sure. The stat that's always thrown out to us is that guys are four times more likely than females to be diagnosed with autism. However, when we start looking for a phenotype when we start considering things like dual diagnosis, when we start considering things like camouflaging, which I'll talk about further later, we all of a sudden see that number almost level out, it almost becomes a four, four or a one to one relation, not exactly. But I really believe that the data eventually will reveal that, that in fact, women are just as likely now that's, you know, 10 years worth of research in the future. But I'm I am, I really am of the belief that this is where we're going because autism has been missed a lot for a long time. So the hope is good research, following stuff like what I've put out, will give us more good data and help us to better diagnose.

03:51
I think your work is absolutely needed in this field. And I know a lot of counselors like me are starting to see a rise in clients coming in that are not male, they are female, with some of these masking diagnosis that you just mentioned. Can you share with us a little bit more on how families you know the interaction with families and siblings kind of presents and and where they go from there?

04:18
When I started my research just a few years ago, what I found was there is an incredible amount of data out there about parents reporting on their autistic child, which that's expected, right? We think the best reporter is going to be these people who have reared this child, they can give us the most the richest information. I kept looking I found one study that was kind of interesting where brothers had reported on their autistic siblings and I thought, now what about the person who spends the night maybe even in the same bedroom with this autistic person? What kind of information could they give us? And I was kind of intrigued. I remembered my growing up years, my formative years, my brother and I shared a bedroom and of course We talked about things that we didn't necessarily share with our parents. And I thought there's a wealth of information right there. Let's go there. And as I dug into it further, I found that there was almost no information about women. And of course, zero about women and their sisters. And I really felt like okay, this is a, this is a will that has not been tapped. Let's, let's go and let's ask these women, what it was like to have a sister. And it is very interesting. There was a host of things, negatives and positives, there was growth, there was potential. One of the questions that kind of spontaneously arose in my research was, how are you a better person, or, you know, how has having a sister with autism made you who you are today, and all of them pulled out their hearts sharing about how they're, they're more caring, more compassionate, they're even in fields that are we would label helping professions. Because of the impact having the sister some times older, sometimes younger, bright there with them. It was those private moments that were so fascinating. Them laying in the beds in the bedroom together, talking about how hard school is how hard church is run the school bus together, are riding in the car to school together, even having their first jobs together things that parents would not necessarily see. There were some negatives. There were some of course, there's always what I say negative things that were difficult for the neurotypical sisters, having a autistic system, one of the things they frequently talked about was the sister's inability to maintain this emotional cohesion for long periods of time, like in public, for example, at school, at church at the workplace, how they would break down, so to speak, and start to tantrum and basically that craft or I need a break. And we see that with autistic people, both males and females, where they can only tolerate so much social interaction before it's like I just need a break. But the sisters they were there and they were often that release valve. They were who the autistic sister would go to, to vent for lack of a better word, or the autistic sister would be there to take them in, to put them in the car to drive away to walk away to help them find that privates but, and that was difficult for the neurotypical sister because she was losing her social contact from the youth group or from whatever her employment situation was.

07:29
The struggle for the family of a girl with autism is much larger than what we often recognize, because of concepts like masking or concepts like camouflaging problems that continue to arise over and over again, it's where she's just depressed or where she's just anxious, or Well, she's just a teenager. Those labels don't necessarily help. But that sister still goes back to the bedroom with her and tries to comfort her. Another problem we see is the neurotypical sister wanting to try to comfort the autistic sister using neurotypical strategies. It's like I know this works. And one of them maybe just talk to me, just talk to me and tell me what's happening. And the autistic sister that doesn't really bring her peace or comfort she, she goes, I don't want to talk about it, I want to run away from it. One of the interesting stories I heard one of the adult ladies was talking about how she was trying to connect with her autistic sister. And so they would go on the internet or they'd go on Netflix and find a show they could watch together. And for the neurotypical sister, this was a bonding time. But for the autistic sister, it was a stress relief, it was kind of so the autistic sister violated that level of trust and went and watched the entire season of a show without her neurotypical sister and the neurotypical sister feels a level of betrayal like this was supposed to be our time. It's very interesting to have set there to listen to these interviews to read them again, and to seeing these women's harps as they talk about loving their sister. But feeling this struggle, this balance where I'm trying to interact with her neuro typically, and she can't, and and for us as professionals, that leaves us in a place where we need to look at autism as a family treatment modality, right? We're saying, Hey, your your daughter is 14 1516. She has autism. She's been labeled with an eating disorder and we do want to address that, but I need mom and I need dad and I need you know, little brother and any big sister to come in. And I need us to have this discussion about how autism affects Dad and Mom, brother and sister. Not just her future as far as college, not just her future as far as job is very fascinating. It really was a great piece of research and I'm so happy to have had the subjects I had to do it.

10:00
That's awesome. Um, well, one question I kind of had falling up a little bit here is, when you when you mentioned masking, you know, don't present quite as maybe, as you would expect maybe for the, like the male counterparts and knowing that early intervention is kind of a key thing or dealing with autism here. Um, what are maybe some things to look for? You know, and I know, it's probably harder than then people would like, but Oh, yeah. So what are some things to look forward to, you know, early on, to sort of support?

10:33
Right? Yeah, what we found, in prior research, as I was working up towards this research, was that women with autism were more likely to be diagnosed with either depression, anxiety, or an eating disorder, instead of autism. And those are not necessarily warning signs of autism, they are a warning sign for parents and professionals to say, Okay, this is here, why is this here? Is there something else that I'm missing? And we as professionals, we like milestones or milestones we like? We like markers, if you will now markers, if you will, that say, you know, here is something depression? What is that telling me is coming? Is that telling me that there's gonna be struggles in middle school? Is that telling me that there's problems at home? Is that telling me that this is going to turn into an academic issue? We like doing that? And sadly, with females with autism, or or the female autism phenotype? Those are, those are not well, they're not very bright along the trail of life or a detailed diagnosis. We could wish that, hey, there's anxiety in this young lady at six. Let me look for something else. The truth is, we as professionals should always be looking, we really should. There's other signs that are not necessarily diagnostic, like seeing this young lady at at 468 10 and 12. Still tantruming being super stressed about social things. Again, like church, like work like school, like clubs, like sports, we, as professionals should always takes step back and go, Okay, what is that guidepost pointing us to? And finally, that that relationship between siblings, when we look at young ladies with autism with a neurotypical sibling, or two or three, and we see that that relationship is distinctly different from her other siblings relationships with one another, that should be a flag to us as professionals to go there. That means something. Now, what does it mean? that's sitting down? doing the interviews, asking the questions, of course, looking through those test protocols? going, Okay, could this be autism? Could this be an intellectual impairment in some place? Could this be anxiety? another warning that I often see in my own practice is people show up on medication having already been prescribed, say a pediatrician has prescribed or, you know, maybe even a psychiatrist has prescribed, but the medication is not producing the results they're looking for. And they're frustrated. And so the psychiatrist refers them to me for something else, some testing, some interviewing some something else. When medication doesn't work, that should be a sign for us as professionals to go. What else is this? Not that we're second guessing professionals, but they were asking deeper questions. Could this mean something else? masking behaviors typically have the effect of deceiving us? She's just depressed, she's just anxious. She has a genuine eating disorder. And instead, we should also consider Okay, what about camouflaging behaviors. camouflaging behaviors are when the autistic individual and in this case, the young lady, presents as neurotypical, in certain social settings, again, schoolwork, church clubs, sports, those different activities where she holds it together nicely, for that hour. But after that hour, it's almost like she's a different person. We We won't report from parents telling us this is what happens. Obviously, we're not in the home, or we're not in the automobile, or we're not in the sports arena. So we're not seeing it happen. But a great source of information is siblings, who take that sister in this case, back in, they go back to the bedroom is like What's wrong, I don't want to talk and it builds emotionally into a tantrum. So I guess what I'm saying with this is good reporting, getting collateral data from not just mom and dad. But if there's maybe some siblings who's willing to say, this also is going on, or I see this at night when we talk or I see this at the dinner table. There is a lot of shame caught up around having a diagnosis, especially a developmental disorder that we generally see as lifelong.

14:57
Thankfully, professional counselors like ourselves are able to bring people in BPMN bring people into the privacy of our office and sit down and go, I'm professional. And I would like to help and need you to be honest in telling me about these behaviors, what's happening and listening to all parties involved mom, dad, brother, sister, if there is a best friend, if there is a grandparent involved, getting collateral data good and varied collateral data allows us to kind of look through the mask that that maybe the parents have participated in presenting, looking through the camouflaging, reappearing, are trying to present as neurotypical of the autistic individual and going, but what happens afterwards, and afterwards, how do you feel to stimulate is very bad MRI, I see a number of them in my practice on a weekly basis. And it it is a comfort for them to have this one on one with the counselor. When mom's not there, when Dad's not there when grandma's not there. Nevertheless, we still need good information. And camouflaging for us as professionals may be socially appropriate. But it's not going to allow us to help we really need parents to help us see through that camouflage, we really need siblings to help us see through that camouflage. And I'm really happy that camouflaging as a concept is getting more attention. Obviously, boys with autism do it also just differently, which again feeds back into our theory of a female autism phenotype, a unique presentation of autism to females.

16:46
Well, I think this is really wonderful information. And I hope the world of psychology and counselors and psychologists and you know, all take this into consideration the collateral data is extremely important to really validate, you know, the diagnosis that we're coming up with, and that we're giving in and making sure that our clients feel valued and heard and listened to, you know, while they're there. That's very, very important work that you are doing God, Carol,

17:19
thank you. Thank you for having me. often think about people who present with dual diagnosis because the the the trend is we're seeing more of that, right. Because of the day and age in which we live, we're seeing more anxiety, we're seeing more depression. And I guess as a as a word of warning, always look a little bit deeper. What else could it be? And if it is a learning disability, if it is a personality disorder, if it is something more serious, we we want to see that we care we are here as professionals. We love these young ladies and these young men who come and sit on our couch and think the world of the online I am. I'm just so blessed to be in this profession.

18:01
We are blessed to have you here for sure. Well, Dr. Carroll, is there anything else at all that you would like to share with our listeners today? And if they have any questions, is there a way that they can reach out to you?

18:13
Sure I am. As I said at the beginning, I practice just north of Atlanta and Marietta. My email address is will Carol dot therapist@gmail.com. Feel free to write and ask questions. Fair warning, I typically check email once a day. I'm not as tech savvy as others. But there. Sadly, there's not a lot of books out there on females with autism, which I'm hoping in the next decade would remedy but but I'm always open for questions. And of course my work can be found on Google Scholar under the dissertations portion. And again, I am I'm happy to be here. Thank you for having me.

18:57
Thank you so much for being here today.