Latest / Autism Unmasked / Episode 3: Diagnosis Journeys - From Self-Discovery to Support

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Episode 3: Diagnosis Journeys - From Self-Discovery to Support · Autism Unmasked

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So the first wave, first reaction is just kind of like immediate relief and happiness and
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just peace. And then the second is kind of like integrating that identity into their life and
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thinking about how things might've been different. And also kind of thinking about now that I
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have this, what does this say for me going forward? Like, what are the struggles that
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I'm gonna face now that I have a name for this? Like, what are my struggles and how do I deal
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with them?
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This is Autism Unmasked, a conversational podcast focused on exploring complex topics through
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open, inclusive conversation.
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Welcome back to Autism Unmasked. I'm Isabel. And I'm Kel. Today we are talking about different
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aspects of the autism diagnosis journey. This process can be filled with relief, frustration,
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and sometimes even grief. My diagnosis journey wasn't with autism, but the feelings I experienced
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seemed like they would overlap. I was diagnosed with a rare medical condition in 2017, but
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had been experiencing symptoms for at least five years prior to that. It was really frustrating
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and exhausting not knowing what was happening to me or where to go from there. That's awful.
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So sorry to hear that. So my diagnosis journey, I... and second grade was diagnosed with ADHD
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and then I was medicated for that for a while and then I stopped taking that medication
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because I didn't like it and my doctor said it was okay. I checked and then I wasn't
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diagnosed with autism until my going into my second year of college. That's a long time
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to wait. Yeah. In between and like I knew something was different, but I didn't know how to answer
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it. Yeah. I'm sure it also makes you feel like, well, like, what's different? Am I
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doing something wrong? Yeah. Or should I be doing something differently? Yeah. Well,
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we know every story looks different, but we also know how powerful it can be to finally
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have language for what you've been experiencing. That's what we're on masking today. The discoveries,
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the detours, and the questions that diagnosis can bring. So, without further delay, let's
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get into our interview.
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Today on our interview segment, Authentically Speaking, we're joined by Dr. Keely Hirsch,
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a psychologist who works extensively with autistic adults. We'll look at the clinical side of
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diagnosis and what might come after in terms of emotions and self-understanding, especially
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for those who discover they're autistic later in life. Thanks so much for joining us today,
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Dr. Hirsch. Can you tell us a little more about yourself and the work you do? Definitely. So
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I'm really happy to be here because I love working with autistic individuals and just supporting
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the autistic community. So I'm a psychologist at Penn State Health. um And my primary responsibilities
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are conducting autism evaluations across the lifespan. So usually individuals anywhere
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from ages of three and then up. Like I evaluated a 72 year old a couple of months ago. So really
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any age um after the age of three. In addition to doing autism evaluations, I provide therapy
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to autistic individuals, usually ages 15 and up who have like level one or level two autism.
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um And so, yeah, those are some of my responsibilities. What made you... become focused on supporting
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autistic eventuals specifically in your work? Yeah. I mean, I don't have like a very exciting
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story. I wish I did, but um I, after I completed college, I started working as a therapeutic
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support staff. doing in-home behavioral therapy work with autistic individuals, um usually
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with like kids and teens and just helping support them and improving like some of the challenging
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behaviors that they had. So in that experience, um What I found really interesting was the
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dynamic between the parents and the child and how they influence one another. So like if
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the parents were happy and in a good mood, that seemed to really positively influence the child.
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And then if the child was in a good mood, that influenced the parents, but vice versa. So
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if the kids were having a tough time, that would really influence the parents. And then that
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kind of influenced the kids. So this like cycle effect that was happening, and that was really
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interesting. And then I would see kind of the interactions that the parents had with their
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significant other spouse or the other parent of the child and how that influenced them.
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ah So was really interested in just the family dynamics of it. So then when I was in my doctoral
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program, I really wanted to learn more about autism and family dynamics and focused all
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my training on understanding autism. And when I did a lot of my clinical rotations, I got
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exposure to doing autism testing and working with like college age autistic individuals
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and adults. And that really was like the most interesting thing to me. So wanting to do diagnoses
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and working with like adults are like the 15 and up that I do. um Yeah, so that's kind of
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been my interest in this and I've just kind of gone from there. You mentioned the family
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dynamic of the diagnosis, getting into the diagnostic process itself. From your perspective,
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what does that process typically look like for children compared to adults and what is similar
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and what differs? Yeah, I mean, every clinician or psychologist that's evaluating might have
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their own process. I think what's generally involved, and I try and do this for both children
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and adults, is getting a really thorough background history. So like hearing all about their development
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and their life and different experiences throughout their life and their. academic history, social
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history, medical, psychiatric, um and then in adulthood, I'll hear more about their adult
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life and things that happened to them after they turned 18. uh And then another part of
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the evaluation is doing some standardized testing, which is really like, this is what's kind
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of different between children and adults. So for children, testing can be a lot more observation-based
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where we do some interactions with the child and kind of see how they respond to us and
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we like, look at for different behaviors with adults. um We don't necessarily do that like
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really specific like observational based test, but there is a observational kind of interview
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test where you're talking with the individual and asking them questions about autism, but
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also kind of seeing how they respond to you and interact with you and kind of looking
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for any kind of like social challenge cues or any kind of repetitive behaviors there. So
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it's a little bit different. One of like the main testing, standardized tests that are used,
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especially for children is called the ADOS, the Autism Diagnostic Observation Schedule.
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And that is usually used from like toddlers all the way up to like, like adolescents and
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maybe like young adults. I try to cut the ADOS off. Like when I'm testing, I try not to use
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the ADOS for anyone over the age of 25. In the autistic community, they've found that
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it feels very condescending to use that in those interactions and activities that we do. I
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totally get that. I use a different test called the MIGDIS, the Montero Interview Guidelines
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for Diagnosing the Autism Spectrum. That is more of that interactive observational, but
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conversational testing that we do. You're not just sitting there watching. Watching them
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do things. Exactly. Yeah. And yeah, so that's a lot better. And then the last part of the,
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so the two parts I talked about for the diagnostic interview is like the really thorough background
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interview, then doing the standardized testing where I like that conversation interactive
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component and observational component. And then the third part is what I call a diagnostic
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interview where I go through. I like to do the full traits and spectrum or full traits and
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features of autism spectrum disorder and see like what behaviors and features a person might
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have presented with. That also helps me figure out, they meet the medical diagnostic criteria
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that we're looking for? um So usually for children, I'm relying heavily from their parents or like
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their guardian to give me most of their information. A lot of times for adults, they might not
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have a parent or they might not have that relationship with their parents. So a lot of the information
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comes from that individual themselves. I really do try and have them bring in like a spouse
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or a friend or like a sibling or cousin or someone that knows them pretty well that can give
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what we call collateral input. So getting their perspective, uh but it can be really hard.
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And so it's not required for uh the adult to have someone else there, but it is usually
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helpful to feel really like. securing my decision with it. Yeah, that makes sense. Are there
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certain signs or patterns that often get missed in childhood and are later recognized in adulthood?
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So I think, you know, in recent years, we have really been expanding how we define autism.
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I think prior to like 2013, and I know that's a really specific year, but in 2013, the medical
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diagnostic criteria that we had for autism shifted and it created, it went from like these different
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types of autistic disorders like There was autistic disorder, there was Asperger's syndrome, there
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was something called persistent developmental disorder. Those different diagnoses were eliminated
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and they all were bunched into a diagnosis called autism spectrum disorder. Here, we're able
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to see a greater range of symptoms and traits and features of autism after 2013. I think
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we're doing a better job at being able to expand how we define autism and are able to like
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catch things that we see maybe more in childhood that we wouldn't have seen before that we can
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like identify people more now than we would have prior to 2013. But I do think for adults,
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ah know, when they're coming in, they haven't had the evaluation. What we really see is
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more of like the challenges in work. or in school, like if they're in higher education
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past high school, or really feeling like they can't connect with others. uh We see a lot
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of what's called autistic burnout. So that's when they're just feeling so drained from the
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needs and demands from their work or school or things in their life that there's a lot
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of demands there, but they also have to deal with sensory input challenges or feeling like
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they don't necessarily understand the social cues or like just typical social expectations
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and trying to also mask, which can be very draining. So uh we see maybe a little bit more
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of the like depression or like uh autistic burnout in adulthood, maybe more so than we would see
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with kids. I think in kids we're going to see a lot more of the behavioral issues like tantrums
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and meltdowns uh and maybe aggression and things like that. But in adults, I feel like we see
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more depression, anxiety coming out. Yeah, because they've been masking and like either don't
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know that they're autistic or are trying to just assimilate into, you know, what's expected.
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Exactly. Exactly. Yeah. And as people get older, they learn more and more masking strategies,
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like which can be helpful, you know, to help them feel like they can function a little bit
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better. Like being and I always like to say em being a neurodivergent person in a neurotypical
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world. So they might be able to learn a lot more strategies, but that's still putting in
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a lot of effort and being conscientious of yourself and others. So it can be a lot in draining.
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Yeah. Going along the lines of adults and their um diagnosis journey, how would you say that
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self discovery or self diagnosis and uh an official diagnosis tend to overlap or differ? Yeah,
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well, It's interesting. I've um been working with autism for, let me see, oh gosh, 15 years.
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And that also includes when I was doing the in-home behavioral work. But there has been
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just such an explosion of people learning about autism and wanting to better understand if
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it's something that fits them. um And I think that, you know, in the autistic community,
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self-identification, self-diagnosis is becoming a lot more accepted, which is wonderful for
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people who either like can't access someone to get to do the testing or they don't necessarily
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agree with the testing process. Like that self-identification is becoming more accepted in the community.
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But um I do think that um like once people start identifying more with the diagnosis, sometimes
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they want that kind of confirmation or verification that they do have a diagnosis. It could feel
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more validating for them to be like, yes, the professional has like gone through all my
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information and has talked with me and has done these tests and like has confirmed this diagnosis.
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So it just feels more, maybe more authentic for them. um And also like for some people
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getting the diagnosis, they might be able to access certain like accommodations at work
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or school or like have better conversations. uh with people in their life or find better
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strategies. I do think that like uh self-discovery, like once you start going down the path of
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learning about autism and how maybe it presents in females or in like the less like stereotypical
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way, people can identify with that. And that can already feel kind of like relieving for
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some people that maybe like instead of it feeling like, oh, I'm always the problem or people
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just don't like me or I'm not good enough. Well, my brain just thinks about things differently.
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And so maybe it's not necessarily like a mean problem. Maybe it's just people just don't
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like match how I think about the world and see the world. um So I think that that in itself
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can be a really nice like awareness. And then when you eventually do go for the visual diagnosis,
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if you, if people do decide to do that, it can be really confirming and validating. Yeah.
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I know just like from personal experience with having ADHD, like I know that I've struggled
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with it since I was a kid and I've always kind of thought I maybe did and once I actually
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got the diagnosis it was like a relief because I was like, okay yeah, I was right. Exactly,
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exactly. Especially like when oh so many people who like are not as familiar with autism or
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ADHD, like these different neurodivergent disorders like They can really minimize them, be like,
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well, everyone's a little autistic or like everyone's got a little bit of ADHD or you're fine, or
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it's just anxiety or like you just need to work harder. Like really kind of invalidating those
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experiences can be really tough. So getting that confirmed diagnosis can just be like,
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see, like, like proving it for ourselves and other people just being like, look, it's not
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like just these like simple things in life. I'm like actually hitting a threshold where
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there is significant impairment and I do need more support. So how do factors like, if they
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do, gender, race, or cultural background affect someone's ability to be recognized as autistic
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in your perspective? Yeah. um Well, I do think that, uh well, I like to say autism does not
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discriminate. So anyone different race, ethnicity, gender can have autism. uh But in the past,
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historically, people of color were under-identified and given more like, more severe diagnoses,
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like, or like, I don't want to say severe, like maybe more like stigmatized or negative, like
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schizophrenia, like childhood schizophrenia for like African-Americans versus it actually
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being autism. However, this has seemed to reduce with more awareness and education with autism.
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And so, you know, I think it's becoming a lot more identified in people of color and more
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like appropriately identified versus people just making assumptions that it's not autism.
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Yeah. But I do think, so with gender, think this is like, this is an area of really like
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strong interest for me. um So the CDC reports that autism occurs three times more in males
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than females. um And so, you know, I'm really curious about this. Like, is it actually that
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much higher in males or are we just like only diagnosing the male like classic stereotypical
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presentation? I think that there is a female presentation that looks really different from
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males. But all of our like questionnaires and screeners and testing and even the medical
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diagnostic criteria are based on that male presentation or male phenotype of autism. ah
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But I think there's more research coming out on what the female presentation or female phenotype
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looks like, ah which is really exciting because I think that like it's gonna capture more
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people or females or people assigned female at birth um that don't usually get identified
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until like middle school or high school will be able to identify them a little bit earlier
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and just have more supports in place for them. Cause that's kind of a common thing. Girls
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or people assigned female at birth are not identified until like maybe high school or
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like if they're lucky middle school but usually high school or later on in life in adulthood.
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um So I think that's kind of an interesting thing. And I'm glad that the world is moving
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more in that direction. Like some of our questionnaires that we use. So like one really common one
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that I like to use is called the social communication questionnaire. And for that one, usually parents
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are like a legal guardian will fill it out for the individual. And we look for like a score
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of 15 or more. But research has suggested lowering that cutoff for females. So like if they score
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a little bit lower, they can still meet this like threshold that would be suggestive of
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a diagnosis. So I'm glad that some questionnaires are starting to make the changes to meet the
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more like female presenting presentation of autism. Going further into that, like are there
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other ways that diagnostic tools and criteria have continued to evolve to reflect the diversity
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within autism? Yeah, so I mean, Like I said, like they're starting to make a little bit
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of changes, but we're still not there yet, which is like, mean, again, I think it's more of
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like the gender piece that we're seeing, still a lot of the criteria, like I said, the criteria,
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the like standardized tests that we have, the questionnaires are still based on that like
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classic male stereotypical presentation. So we're not really there yet, but we're moving
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in the right direction. And I think having more psychologists or whoever's doing the evaluation,
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as long as they're getting more education about the female presentation, rather than having
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more of that narrow kind of male view, think they're gonna be able to capture the diagnosis
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a lot more in females. But yeah, we're still moving target and trying to get up to date
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with that stuff. So it really depends on the clinician. Yeah. So after the diagnosis, then...
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Is there a common emotional response or is it more case by case that you see and what
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types of emotional responses do you see? Yeah, it's so interesting. um So I think, so if we're
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talking mostly for adults, know, adults coming in are usually self-referred. Like they are
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seeing it in themselves. They are questioning if they have autism. Sometimes like parents
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are encouraging their adult child to go in and get evaluated, but You know, what's interesting
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is it's harder to tell someone, no, you don't have autism than telling them, yes, you do
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have autism because the people coming in already have in their mind that they have autism and
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they're, wanting this confirmation to like solidify this diagnosis for them. So after I do the
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testing and I'm like, yep, you know, everything aligns with the autistic diagnosis, you know,
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everything I saw, everything I heard really matched it. Like I'm diagnosing you with autism.
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They're like, most reactions are like, Great. That's what I expected. Like it's kind of what
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I was thinking would happen anyways. And, um, or there's a lot of like relief, like this
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instant relief of like, Oh, finally, I feel like I have answers. And like, I like this
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explains so much. And like, for a lot of people getting that diagnosis, it just feels like,
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like a relief, like this huge wave of validation of something they've struggled with. And now
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they have something that can help them better understand themselves. So, but what I've heard
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is like, after that initial, like, wave of like validation and relief and like being happy
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and I see tears a lot like good tears like happy tears when I diagnose. I hear that there's
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like a second phase that they go through of like, oh wow, I'm autistic. So what does
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this mean? And then they kind of go through the grieving process of, know, I wish I
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had known this about myself when I was younger because I would have had different supports
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in place or like understood myself better, been kinder to myself, or more compassionate. or
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maybe found the right group of people who matched my identity. um There's a lot of grief that
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goes into ah wishing they had a different younger self. So the first wave, first reaction is
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just immediate relief and happiness and just peace. And then the second is integrating
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that identity into their life and thinking about how things might've been different. And also
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thinking about now that I have this, what does this say for me going forward? uh What are
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the struggles that I'm gonna face now that I have a name for this? Like, what are my struggles
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and how do I deal with them? So now it's kind of like, how do I address this head on? So
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it is kind of like a multi-phased reaction from what I've seen. But I do think the biggest
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part is just relief and peace and happiness. And like I said, it's harder when I have to
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tell people I don't think that they're autistic. Cause usually I have to... They're like, but
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why? Like, I don't understand. Like, I feel like I do all these things and I'm like, well,
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you know, from what I'm seeing and it's tough cause it can be really subjective. But like
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when I see it, I'm like, well, you're showing maybe some of these signs, but we're not getting
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like the full picture. Like maybe symptoms haven't been present since before you were
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five years old. um Maybe like they, it's more of like a trauma reaction that has caused this
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rather than it being a neurodivergent condition. So it's harder to tell people, no, you're
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not autistic than to tell them that they are, which I think is kind of interesting. Cause
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I think a lot of times the negative view was like, people don't want to like, if having
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a diagnosis of autism was like such a horrible thing, it was viewed so horribly. Like if parents
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were like found out that their child was autistic, they'd be really, really upset. It's kind of
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funny how it switched. Yeah. I mean, it's good that it switched. Exactly. Exactly. So we kind
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of. started talking about this, how can getting a diagnosis in adulthood change someone's view
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of themselves or how they view their life and surroundings? Yeah, I mean, I think that's
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like kind of, well, just like the main reason people are going for the evaluation in adulthood
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to like rewrite themselves and like better like cope with their life and their environment.
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um So I think for a lot of people that are coming in for autism evaluations, they've had
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hardships throughout their life. I think that like they're coming in because they've struggled
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in some way, either if it's been socially throughout their life or academically or uh like in their
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work or with family members or just like dealing with even health issues, like gut issues or
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like not being able to eat certain foods and like they've been impacted in their life.
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They've gone through a lot of difficulties. And so when they have something to explain
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it, I think that can give a lot of relief. and they can start finding more of that self-compassion
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and empathy for themselves of like, instead of blaming self of like, oh, I wish I would
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have done this differently. Like hindsight is always 20-20. We can look back and think
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like, oh, if only I had done this, but we can find compassion and be like, well, I couldn't
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have done this because I didn't know how to do this or people didn't understand me. So
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like, it wasn't going to work out anyways. And even if I did do this, it probably wouldn't
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have been a good thing for me. So I think they're able to find more of that self-compassion
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and empathy, especially if they've had challenges with family members. you know, family members
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didn't understand them and they thought like, oh, you're just, you're lazy or feeling like
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parents feel like they're, they're weird or like their kids need to go, like they wish
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they had just like a quote unquote normal kid. Like go play with your friends, go have sports,
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stop doing. this one, like stop focusing on all your books and reading all these things
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or this video game, like go do things. Like I think kids can really internalize that
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and throughout life just not feel good about themselves. Like the messages that they get
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in childhood and throughout adulthood, like just feeling like they're just not good enough.
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This can help them again, find that empathy and self-compassion for themselves that they
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can just realize my parents didn't get it. Like they... if they knew or maybe if they understood
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this, they would have been a lot more supportive and understanding and not made me feel bad
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about who I am. Yeah. You kind of mentioned this a little bit, but I do like, feel like
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it's almost like a clean slate and like a fresh start to um themselves and their life. Absolutely.
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And I think it could be really empowering because I think now once they have like this diagnosis,
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they're like, okay, I'm autistic. What can I do to best support me being a neurodivergent
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person in a neuro-typical world? Like, what can I do to advocate for myself and like, and
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like make changes that are gonna work for them? Like if they need to create more routines and
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structure in their life, or if they need certain accommodations at work, or if they wanna be
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able to communicate with their friends, like. I only have this much social bandwidth, you
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so I can only hang out for like an hour or, you know, I can only do once a month kind of
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hangouts. Being able to start advocating for themselves and setting boundaries. It could
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be really, really empowering for them to like fully thrive once they feel like they know
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what they're doing or like they know that they have autism and they can move forward to best
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support themselves. Yeah. For people kind of on the other side of things. who are nervous
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that getting a diagnosis will somehow change who they are, what would your response be
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to them? Yeah, I mean, I think how I view autism and how it is commonly viewed is that autism
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is an identity. It's not something that changes the person, it's just who they are. uh recognizing
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that this is just how they've always been, their brain is wired in a different way, they just
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think a little bit differently than others. nothing is going to change about them when
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they get this diagnosis. It just helps them understand that they are different and different
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isn't bad. It's just different. And that they can better support themselves. Something I
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always like to tell people though is for some people with autism, autism can be an invisible
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identity. know, walking down the street, if you have autism, people might not know that
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you have autism. It's something that you like. There are some autistic people who who can't
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necessarily hide their autism. Like maybe they do have uh like more of the like level three,
29:27
which is maybe a little bit more of those like more significant challenges or like maybe uh
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we see a lot more of the like common presenting symptoms of like stimming in public or repetitive
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speech or maybe getting like really upset and having like lots of meltdowns or those types
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of things are not, or just like walking away in the middle of conversations. Like some people
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can't necessarily hide their autism, but Usually for people that are getting diagnosed in adulthood,
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ah they probably can hide their autism because if they couldn't, they would have probably
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been identified earlier on. um But autism can be an invisible identity. And I like to tell
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people that it is totally their choice if they want to let other people know. I think the
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bigger thing is worrying about, now I have autism. What does that mean for me in terms
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of how I like? interact with people or tell people like, do I have to tell people that
30:18
I'm autistic? And the answer is no, that's 100 % up to you. It's kind of like, with like sexual
30:24
orientation, that's something that you can choose to communicate or something that you don't
30:30
have to communicate. But I do think that it's a choice and knowing that nothing changes
30:40
about who you are. It's just, oh, here, we've given you a label to classify how your brain
30:45
is wired differently. And you can let people know you can. A big thing that I've heard,
30:52
and I have a number of patients that I've worked with in therapy and also that I've uh
30:57
diagnosed have questioned, should I tell my parents or should I tell my friends? And again,
31:04
it's really up to that individual. A lot of times people come in for their evaluations
31:09
because their parents don't believe them. The parents are like, what do you know? You're
31:14
not autistic. You're just, you're just a little shy or you're just quirky or you're anxious
31:19
or, know, if only you had more experiences, then you wouldn't be this way. But once they
31:24
get that diagnosis, they can kind of go back to their parents and say like, Hey, yes, I
31:29
like had a doctor evaluate me and I do have this. So I think, you know, it's going back
31:36
to the like, how will this change who they are? um It won't change them, it's just who
31:40
they've always been, but we're just giving you a little like name for maybe like how your
31:45
brain is wired. It's just wired a little bit differently. um And being able to keep that
31:52
identity to yourself is a hundred percent up to that person um or sharing it with others
31:57
is up to them as well. um It's really, it's kind of a nice thing to be able to have that
32:03
choice if you want to. If someone thinks they might be autistic but isn't sure where to begin,
32:08
what advice would you give them? Well, I think the first thing is if they're thinking they're
32:14
autistic, I think that's a great thing that they're already potentially open to this diagnosis.
32:19
Or if they're like nervous about it, like getting more education and research, researching what
32:25
autism can look like. There's a really wonderful website that I recommend to all autistic people
32:31
or people who are questioning if they're autistic. It's the Autistic Self Advocacy Network or
32:36
ASAN, A-S-A-N. uh That is a website that is created by autistic people. uh So their motto
32:44
is nothing about us without us. So this whole website is uh is autistic people who are writing
32:51
about what autism is, like they're able to communicate. And I think that's so important, like having
32:56
an autistic person describing it versus what like a neurotypical person feels is autistic.
33:02
and autism. So it's a great website. It's great for families. It's great for understanding
33:06
autism. I am not sponsored by them in any way. I think it is just like an excellent website
33:12
that I refer anyone that I diagnosed with autism or someone questioning it to go to that website.
33:17
And they have their own book that they wrote that talks more about autism and what it can
33:21
look like. So I think that's a really great place to start. I would say don't hop onto
33:27
TikTok as your first place because if you go to TikTok, everybody's autistic. I mean, I'm
33:34
definitely, I got pulled into some of the like ones, not necessarily for autism, but like
33:39
for health things. like, if you sit crisscrossed and you like to do this with your legs or
33:45
whatever, you might have this one medical condition. And so that's kind of how it is with autism.
33:50
They're like, if you... if you sleep with your arms kind of scrunched under you, you might
33:54
be autistic. I mean, everyone's autistic according to TikTok. uh So like a great, I love that
34:01
there's like such great acceptance and people talking about it there. And like, that's wonderful.
34:05
But if we're really trying to get good evidence and information, I think starting with Assan,
34:11
the Autistic Self Advocacy Network is really great. And going to reputable sites like uh
34:16
NAMI, National Alliance of Mental. illness and the National Institute of Mental Health.
34:22
Those kind of websites are really good and they have lots of links to other reputable websites
34:26
can be really, that can be really helpful. Yeah. Going back to what you said before, you kind
34:32
of talked about misunderstandings and assumptions with family members. How would you say in
34:38
what ways can family members, friends, or even professionals better support someone
34:45
who's going through the process of getting diagnosed or getting used to a new diagnosis? Yeah,
34:53
I think it's gonna be unique to each individual and each person. I think family members should
35:01
be open to what autism is and educating themselves because I think a lot of times parents might
35:09
have more of that narrow view of autism. and maybe more of like a negative stigmatized view
35:14
of autism. So educating parents and family members, friends can educate themselves on
35:19
more of the spectrum of autism, like what that can include versus more one end of the spectrum,
35:26
like that more stereotyped or stigmatized version of autism. So kind of expanding their
35:31
own view of what autism is. um I also think like trying not to minimize the individual's
35:37
experiences like, Um, you know, big, a big thing that I'm really trying to advocate for
35:44
is, um, this topic called pathological demand avoidance. Have you guys heard of that topic
35:50
yet? I've heard of demand avoidance. Yeah. So it's, is, I think it's pretty much demand
35:54
avoidance. The pathological is just what they've, what they've added on. But they're finding
36:00
that this is like such a common thing for the autistic brain. So basically pathological demand
36:05
avoidance is like, let's say you're. autistic person, like you're reading your book or doing
36:10
your thing or like focusing on something and someone comes in and they're like, Hey, I need
36:14
you to take the dog out. Like they really have to go. Well, first off, there's like a, like
36:19
a, that unexpectedness of someone like just jumping, like you're in the middle of your
36:24
activity. You're enjoying it. You already have a plan to like, keep doing this. You don't
36:27
plan to be interrupted. And then that unexpected pop in of like, Hey, can you take the dog out?
36:32
So that shift from, I'm doing what I want to. what I have to do something else right now,
36:37
that could be really hard shift. And then also just this feeling of, I don't want to do this.
36:43
And it could feel really hard to feel motivated to do it because there's this strong need for
36:47
control. Like I just want to keep doing what I'm doing, what feels good to me. So the person
36:53
might say no, or like get really upset, or just like make excuses or whatever it might
37:00
be. But so the other person asking them to take the dog out might view that as, gosh, this
37:05
person's so lazy or they never help out or like, gosh, why are they so stubborn? But really
37:10
it's just the autistic brain can't make that switch. It's a deep seated way of living or
37:18
feeling of this need for control and having to switch unexpectedly and do something that
37:23
doesn't feel like they were planning to do or wanting to do can be really, really hard.
37:28
having people educate, like families and friends educating themselves on different aspects
37:35
of autism and it's not necessarily the person is lazy or they don't care or they're like
37:41
um too focused on their themselves and their own interests. It's really just how their brain
37:46
is operating and how it works. I wish more people knew that because oftentimes family
37:52
members are really like um just frustrated with their loved ones with autism because they aren't
38:00
able to do the things that they want when they want them to. So It's tough, but there are
38:05
strategies that can help working to reduce the demand avoidance and helping the person,
38:12
the autistic person be a neurodivergent person in a neuro-typical world. And it's like my
38:17
phrase. So there's a lot of things families can do and like working together with therapists
38:22
or like trying to create structures and routines and understanding the person and figuring out
38:27
like why instead of like, like, why aren't you doing this? Like what's what's getting in the
38:32
way of you doing this? Like, help me understand why this is difficult for you to do. So, like,
38:37
why, what's wrong with you? To like, what's the issue here? What's getting in the way?
38:42
Yeah. No, I think it's really important in general for people to put themselves in that person's
38:49
shoes and try to understand from their perspective. Exactly. What they're understanding and going
38:54
through. Exactly. Exactly. In general, what do you wish more people understood about an
39:01
autism diagnosis, especially ones that come later in life? Yeah, well, I'll say the classic
39:08
like autism quote, if you've met one person with autism, you've met one person with autism.
39:14
So every person with autism presents so uniquely, so differently, like, like, Some people with
39:21
autism have sensory processing issues. Some people don't. Some people with autism like
39:25
things to be a very particular way, like don't want anything moved. Some people don't, but
39:30
aren't caring about that. Some people um have to do some stimming behaviors. Some don't.
39:35
Some people have strengths um in certain areas, like um being really uh smart and getting
39:44
homework done and like very intelligent. Some people in the spectrum aren't that way. Um,
39:49
I think it's just, everyone is really, really unique. Like human beings are every, but every
39:53
human being is very unique. We can't just see myself and assume that I'm going to be the
39:58
exact same as you guys. So everyone is different. And I wish people would stop. I mean, this
40:04
sounds bad, but like, I wish people would stop using the binary of like high or low functioning
40:09
because functioning is a spectrum. Like I can be high functioning and like, you know, my
40:15
work and being a parent and things like that, but I can be really low functioning and like
40:20
making sure I exercise or like taking care of myself or like doing the things that are
40:25
going to be good for my body and my mind. Like just because I can be independent in certain
40:30
ways doesn't mean that I'm like perfectly fine. And I think that's true for everyone. Like
40:35
everyone has strengths and weaknesses in terms of the things they have to do in their life.
40:38
And I wish people would just stop viewing uh autism as like higher, low functioning. And
40:45
like, oh, you have the good autism or the bad autism. think functioning is a spectrum, like
40:51
autism. And also remembering that like autism is not a bad thing. It's just a different way
40:57
that the brain works. And a big thing is like people, think the society needs to change
41:02
from like, oh, the autistic person needs to manage themselves to how do we as a society
41:07
better support people with differences in their brain and how they function. um trying to shift
41:15
it from fixing them to how do we fix the system. To wrap up, if someone listening is just beginning
41:22
their own journey toward understanding themselves, what's the most important thing you'd want
41:27
them to hear? So I think someone starting to take this journey, I think that first step
41:34
in taking it a journey is awareness and wanting to improve your life. And I think that's already
41:39
a good first step. ah I do think as you begin to learn more about this and this process,
41:44
uh It might be harder than easier for some people. Like there can be some roadblocks or brings
41:50
up some memories that can be really upsetting or difficult, or we might feel really guilty
41:55
about ourselves or others, or, you know, it can stir up a lot of emotions. uh But I think
42:01
understanding yourself is such an important thing in terms of like living your best life,
42:07
having your best mental health and wellbeing. uh If you're able to like... Be kind to yourself,
42:13
understand that like this, that like you may not have chosen things to be a certain way
42:18
and you were just doing the best that you could in the situation. Finding that self-compassion
42:22
is important. And you know, with autism, it's not a blood test. You know, it's nothing straightforward
42:29
to be able to say yes or no. I do think like, like therapy, you don't have to have a formal
42:36
evaluation to be diagnosed with autism. Therapists can diagnose, psychiatrists can diagnose. ah
42:42
If you do want that formal evaluation, do a little bit of research on the psychologist
42:47
that's gonna be doing it. Make sure that they kind of align with who you are because it can
42:52
be subjective. um I'm making a decision based on what I see and what I hear, but that has
42:59
to go through my own mental filter. So it's not a perfect system. ah But I do think that
43:06
it's wonderful for self-awareness, self-exploration. um finding out how you can be the best version
43:13
of yourself if that's with getting a diagnosis or just finding strategies to help yourself.
43:17
But I think self-awareness, self-improvement um is just a wonderful, wonderful thing for
43:23
living life in a really happy way. Yeah, I agree. Well, Dr. Hirsch, thank you so much for joining
43:30
us today and sharing your insight. Absolutely. Well, thank you guys for having me. This is
43:35
wonderful. ah And I always love talking about this topic. So thanks so much for letting me
43:40
talk about it and share my insights. Yeah, of course. We really appreciate you helping our
43:46
listeners feel more informed and supported as they work through their own paths. We hope
43:51
everyone takes away something valuable from today's discussion.
44:00
such a great conversation with Dr. Hirsch. think she hit on a lot of different good points.
44:07
Kel, are you ready to get into some of our listener questions? Sure! Alright, let's get into Ask
44:13
an Advocate.
44:23
first question is, how do I decide or know if it's worth trying to get a formal autism diagnosis
44:30
as an adult? I feel like if you need help with anything, then it's worth trying. There's
44:40
specific things that you know you're going to have to apply for. Mm-hmm. Yeah. The second
44:47
question is, relate to autistic experiences I see online, but I don't know if that means
44:54
I'm autistic. Where should I start? It's a good question because like a lot of things,
45:00
especially on TikTok, I feel like are just like, you do this random thing, you're autistic.
45:05
Yes. And may not necessarily be true. So I would see about talking to a... healthcare
45:15
professional of any sort, whether that's your primary care or someone more related to psychiatry,
45:25
but like kind of starting there. Yeah. How do you handle the mix of emotions after getting
45:35
a diagnosis? mean, it can be difficult. just, it's good to have support. Even if it's
45:44
not human support, like you get it online or you have a furry friend or other kind
45:52
of pet that isn't furry. um You can do other things to help you process, like maybe journal
46:06
or just feel out how you feel. Yeah, I think those are all really good options. Our next
46:16
question is, I'm worried that a diagnosis might change how my friends or family sees
46:23
me. How do I navigate that? I mean, it is gonna change a little bit, but it's still the
46:32
same you, you know? Right. And you're also already kind of, you know, it's not like you're,
46:40
how you're acting and who you are is changing. Right. It's just the label that's put on it.
46:46
Yeah. So I'd say if anybody reacts like extremely negatively or treats you different in a bad
46:55
way, then... Well, first try to talk to them and be like, hey, what you're doing is hurting
47:01
me. That's not cool. And if they don't work to change, then that person wasn't meant to
47:09
be.
47:14
Our last question is, how can I connect with other autistic adults if I'm just starting
47:22
this diagnosis journey? Well, our website has great resources for this, links to different
47:31
support groups, or even just events happening in the area. But if you're not from Pennsylvania,
47:41
then. I would start with Googling for autistic support groups in your area. See if there's
47:49
anything about that. Make sure if you're wanting self-advocacy to add that to the search, because
47:57
a lot of support groups can be for parents of autistic people. And that's not going to
48:03
help us self-advocate. Right. Yeah. Especially if they're an adult. Yeah. Well, that is all
48:10
the listener questions we have. Thank you, Cal. And remember, if you would like to ask any
48:17
type of question on the topic of our episode, please email us at info at paautism.org or
48:25
message us on our social media. Well, I think we had a great conversation today. It was
48:33
interesting to hear about the diagnosis journey from someone who actually facilitates diagnosis.
48:38
And it makes sense, but I wasn't thinking the first reaction to a diagnosis would often
48:44
be relief. I agree. We talked about a lot of different aspects of getting diagnosed, and
48:51
it was really comforting to hear. Like a lot of people have the same sort of thoughts or
48:59
feelings or struggles with having the diagnosis process. Yeah, I'm sure. We hope you've enjoyed
49:07
our conversation today. If you'd like to learn more about autism diagnosis, we have several
49:13
different resources focused on the diagnosis journey on our website, paautism.org. Some
49:19
of these resources include early childhood screening and diagnosis, resources for a newly diagnosed
49:26
individual and understanding autism evaluations, to name a few. You can find links to these
49:32
resources in the description of this episode. Next month we'll be talking about relationships,
49:38
friendships, and building connection in general. If you have questions related to relationships,
49:44
friendships, or social energy, message us them on social media or email us at info at paautism.org.
49:52
We'd love to hear from you. We'll see you next time on Autism Unmasked.
50:09
Autism Unmasked is brought to you by the ASSERT Collaborative, which is funded by the Office
50:13
of Developmental Programs within the Pennsylvania Department of Human Services.