September 25, 2025 • 50 mins
Join us this month in talking about the autism diagnosis journey and what happens afterwards. We meet with psychiatrist, Dr. Keely Hirsch to discuss topics like, what the process looks like, common challenges, diagnostic tools and criteria, ways to be supportive as a family member or friend and more!
If you are looking for more resources on the diagnosis process, check out the links below or go to our website at paautism.org to view hundreds of resources on a variety of topics. Understanding Autism Evaluations Resource
Resources for a Newly Diagnosed Individual
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:07):
So the first wave, first reaction is just kindof like immediate relief and happiness and
just peace. And then the second is kind of likeintegrating that identity into their life and
thinking about how things might've been different. And also kind of thinking about now that I
have this, what does this say for me goingforward? Like, what are the struggles that
I'm gonna face now that I have a name for this?Like, what are my struggles and how do I deal
(00:32):
with them?
This is Autism Unmasked, a conversational podcastfocused on exploring complex topics through
open, inclusive conversation.
(00:53):
Welcome back to Autism Unmasked. I'm Isabel. And I'm Kel. Today we are talking about different
aspects of the autism diagnosis journey. Thisprocess can be filled with relief, frustration,
and sometimes even grief. My diagnosis journeywasn't with autism, but the feelings I experienced
(01:13):
seemed like they would overlap. I was diagnosedwith a rare medical condition in 2017, but
had been experiencing symptoms for at leastfive years prior to that. It was really frustrating
and exhausting not knowing what was happeningto me or where to go from there. That's awful.
So sorry to hear that. So my diagnosis journey, I... and second grade was diagnosed with ADHD
(01:43):
and then I was medicated for that for a while and then I stopped taking that medication
because I didn't like it and my doctor saidit was okay. I checked and then I wasn't
diagnosed with autism until my going into mysecond year of college. That's a long time
(02:04):
to wait. Yeah. In between and like I knew somethingwas different, but I didn't know how to answer
it. Yeah. I'm sure it also makes you feellike, well, like, what's different? Am I
doing something wrong? Yeah. Or should I bedoing something differently? Yeah. Well,
(02:28):
we know every story looks different, but wealso know how powerful it can be to finally
have language for what you've been experiencing. That's what we're on masking today. The discoveries,
the detours, and the questions that diagnosiscan bring. So, without further delay, let's
get into our interview.
(02:54):
Today on our interview segment, AuthenticallySpeaking, we're joined by Dr. Keely Hirsch,
a psychologist who works extensively with autisticadults. We'll look at the clinical side of
diagnosis and what might come after in termsof emotions and self-understanding, especially
for those who discover they're autistic laterin life. Thanks so much for joining us today,
(03:17):
Dr. Hirsch. Can you tell us a little more aboutyourself and the work you do? Definitely. So
I'm really happy to be here because I love workingwith autistic individuals and just supporting
the autistic community. So I'm a psychologistat Penn State Health. um And my primary responsibilities
are conducting autism evaluations across thelifespan. So usually individuals anywhere
(03:42):
from ages of three and then up. Like I evaluateda 72 year old a couple of months ago. So really
any age um after the age of three. In additionto doing autism evaluations, I provide therapy
to autistic individuals, usually ages 15 andup who have like level one or level two autism.
(04:04):
um And so, yeah, those are some of my responsibilities.What made you... become focused on supporting
autistic eventuals specifically in your work?Yeah. I mean, I don't have like a very exciting
story. I wish I did, but um I, after I completedcollege, I started working as a therapeutic
(04:27):
support staff. doing in-home behavioral therapywork with autistic individuals, um usually
with like kids and teens and just helping supportthem and improving like some of the challenging
behaviors that they had. So in that experience,um What I found really interesting was the
dynamic between the parents and the child andhow they influence one another. So like if
(04:50):
the parents were happy and in a good mood, thatseemed to really positively influence the child.
And then if the child was in a good mood, that influenced the parents, but vice versa. So
if the kids were having a tough time, that wouldreally influence the parents. And then that
kind of influenced the kids. So this like cycleeffect that was happening, and that was really
interesting. And then I would see kind of theinteractions that the parents had with their
(05:12):
significant other spouse or the other parentof the child and how that influenced them.
ah So was really interested in just the familydynamics of it. So then when I was in my doctoral
program, I really wanted to learn more aboutautism and family dynamics and focused all
my training on understanding autism. And whenI did a lot of my clinical rotations, I got
(05:37):
exposure to doing autism testing and working with like college age autistic individuals
and adults. And that really was like the mostinteresting thing to me. So wanting to do diagnoses
and working with like adults are like the 15and up that I do. um Yeah, so that's kind of
been my interest in this and I've just kindof gone from there. You mentioned the family
(06:01):
dynamic of the diagnosis, getting into thediagnostic process itself. From your perspective,
what does that process typically look like forchildren compared to adults and what is similar
and what differs? Yeah, I mean, every clinicianor psychologist that's evaluating might have
(06:21):
their own process. I think what's generallyinvolved, and I try and do this for both children
and adults, is getting a really thorough backgroundhistory. So like hearing all about their development
and their life and different experiences throughouttheir life and their. academic history, social
history, medical, psychiatric, um and then in adulthood, I'll hear more about their adult
(06:42):
life and things that happened to them afterthey turned 18. uh And then another part of
the evaluation is doing some standardized testing, which is really like, this is what's kind
of different between children and adults. Sofor children, testing can be a lot more observation-based
where we do some interactions with the childand kind of see how they respond to us and
(07:04):
we like, look at for different behaviors withadults. um We don't necessarily do that like
really specific like observational based test,but there is a observational kind of interview
test where you're talking with the individualand asking them questions about autism, but
also kind of seeing how they respond to youand interact with you and kind of looking
(07:28):
for any kind of like social challenge cues orany kind of repetitive behaviors there. So
it's a little bit different. One of like themain testing, standardized tests that are used,
especially for children is called the ADOS,the Autism Diagnostic Observation Schedule.
And that is usually used from like toddlersall the way up to like, like adolescents and
(07:53):
maybe like young adults. I try to cut the ADOSoff. Like when I'm testing, I try not to use
the ADOS for anyone over the age of 25. Inthe autistic community, they've found that
it feels very condescending to use that in those interactions and activities that we do. I
totally get that. I use a different test calledthe MIGDIS, the Montero Interview Guidelines
(08:17):
for Diagnosing the Autism Spectrum. That ismore of that interactive observational, but
conversational testing that we do. You'renot just sitting there watching. Watching them
do things. Exactly. Yeah. And yeah, so that's a lot better. And then the last part of the,
so the two parts I talked about for the diagnosticinterview is like the really thorough background
(08:41):
interview, then doing the standardized testingwhere I like that conversation interactive
component and observational component. And thenthe third part is what I call a diagnostic
interview where I go through. I like to do thefull traits and spectrum or full traits and
features of autism spectrum disorder and seelike what behaviors and features a person might
(09:02):
have presented with. That also helps me figureout, they meet the medical diagnostic criteria
that we're looking for? um So usually for children,I'm relying heavily from their parents or like
their guardian to give me most of their information. A lot of times for adults, they might not
have a parent or they might not have that relationshipwith their parents. So a lot of the information
(09:25):
comes from that individual themselves. I reallydo try and have them bring in like a spouse
or a friend or like a sibling or cousin or someone that knows them pretty well that can give
what we call collateral input. So getting theirperspective, uh but it can be really hard.
And so it's not required for uh the adult tohave someone else there, but it is usually
(09:48):
helpful to feel really like. securing my decisionwith it. Yeah, that makes sense. Are there
certain signs or patterns that often get missedin childhood and are later recognized in adulthood?
So I think, you know, in recent years, we havereally been expanding how we define autism.
(10:09):
I think prior to like 2013, and I know that'sa really specific year, but in 2013, the medical
diagnostic criteria that we had for autism shiftedand it created, it went from like these different
types of autistic disorders like There was autisticdisorder, there was Asperger's syndrome, there
was something called persistent developmentaldisorder. Those different diagnoses were eliminated
(10:37):
and they all were bunched into a diagnosis calledautism spectrum disorder. Here, we're able
to see a greater range of symptoms and traitsand features of autism after 2013. I think
we're doing a better job at being able to expandhow we define autism and are able to like
(11:01):
catch things that we see maybe more in childhoodthat we wouldn't have seen before that we can
like identify people more now than we wouldhave prior to 2013. But I do think for adults,
ah know, when they're coming in, they haven'thad the evaluation. What we really see is
more of like the challenges in work. or in school, like if they're in higher education
(11:27):
past high school, or really feeling like theycan't connect with others. uh We see a lot
of what's called autistic burnout. So that'swhen they're just feeling so drained from the
needs and demands from their work or schoolor things in their life that there's a lot
of demands there, but they also have to dealwith sensory input challenges or feeling like
(11:51):
they don't necessarily understand the social cues or like just typical social expectations
and trying to also mask, which can be verydraining. So uh we see maybe a little bit more
of the like depression or like uh autistic burnoutin adulthood, maybe more so than we would see
with kids. I think in kids we're going to seea lot more of the behavioral issues like tantrums
(12:13):
and meltdowns uh and maybe aggression and thingslike that. But in adults, I feel like we see
more depression, anxiety coming out. Yeah, becausethey've been masking and like either don't
know that they're autistic or are trying tojust assimilate into, you know, what's expected.
(12:34):
Exactly. Exactly. Yeah. And as people get older,they learn more and more masking strategies,
like which can be helpful, you know, to helpthem feel like they can function a little bit
better. Like being and I always like to sayem being a neurodivergent person in a neurotypical
world. So they might be able to learn a lotmore strategies, but that's still putting in
(12:54):
a lot of effort and being conscientious of yourselfand others. So it can be a lot in draining.
Yeah. Going along the lines of adults and theirum diagnosis journey, how would you say that
self discovery or self diagnosis and uh an official diagnosis tend to overlap or differ? Yeah,
(13:19):
well, It's interesting. I've um been workingwith autism for, let me see, oh gosh, 15 years.
And that also includes when I was doing thein-home behavioral work. But there has been
just such an explosion of people learning aboutautism and wanting to better understand if
(13:40):
it's something that fits them. um And I thinkthat, you know, in the autistic community,
self-identification, self-diagnosis is becominga lot more accepted, which is wonderful for
people who either like can't access someoneto get to do the testing or they don't necessarily
agree with the testing process. Like that self-identificationis becoming more accepted in the community.
(14:03):
But um I do think that um like once people startidentifying more with the diagnosis, sometimes
they want that kind of confirmation or verificationthat they do have a diagnosis. It could feel
more validating for them to be like, yes, theprofessional has like gone through all my
information and has talked with me and has donethese tests and like has confirmed this diagnosis.
(14:26):
So it just feels more, maybe more authenticfor them. um And also like for some people
getting the diagnosis, they might be able toaccess certain like accommodations at work
or school or like have better conversations.uh with people in their life or find better
strategies. I do think that like uh self-discovery,like once you start going down the path of
(14:49):
learning about autism and how maybe it presentsin females or in like the less like stereotypical
way, people can identify with that. And thatcan already feel kind of like relieving for
some people that maybe like instead of it feelinglike, oh, I'm always the problem or people
just don't like me or I'm not good enough. Well, my brain just thinks about things differently.
(15:12):
And so maybe it's not necessarily like a meanproblem. Maybe it's just people just don't
like match how I think about the world and seethe world. um So I think that that in itself
can be a really nice like awareness. And thenwhen you eventually do go for the visual diagnosis,
if you, if people do decide to do that, it canbe really confirming and validating. Yeah.
(15:35):
I know just like from personal experience withhaving ADHD, like I know that I've struggled
with it since I was a kid and I've always kindof thought I maybe did and once I actually
got the diagnosis it was like a relief becauseI was like, okay yeah, I was right. Exactly,
exactly. Especially like when oh so many peoplewho like are not as familiar with autism or
(16:01):
ADHD, like these different neurodivergent disorderslike They can really minimize them, be like,
well, everyone's a little autistic or like everyone'sgot a little bit of ADHD or you're fine, or
it's just anxiety or like you just need to workharder. Like really kind of invalidating those
experiences can be really tough. So gettingthat confirmed diagnosis can just be like,
see, like, like proving it for ourselves andother people just being like, look, it's not
(16:24):
like just these like simple things in life.I'm like actually hitting a threshold where
there is significant impairment and I do needmore support. So how do factors like, if they
do, gender, race, or cultural background affectsomeone's ability to be recognized as autistic
in your perspective? Yeah. um Well, I do thinkthat, uh well, I like to say autism does not
(16:49):
discriminate. So anyone different race, ethnicity,gender can have autism. uh But in the past,
historically, people of color were under-identifiedand given more like, more severe diagnoses,
like, or like, I don't want to say severe, likemaybe more like stigmatized or negative, like
schizophrenia, like childhood schizophreniafor like African-Americans versus it actually
(17:12):
being autism. However, this has seemed to reducewith more awareness and education with autism.
And so, you know, I think it's becoming a lotmore identified in people of color and more
like appropriately identified versus peoplejust making assumptions that it's not autism.
Yeah. But I do think, so with gender, thinkthis is like, this is an area of really like
(17:36):
strong interest for me. um So the CDC reportsthat autism occurs three times more in males
than females. um And so, you know, I'm reallycurious about this. Like, is it actually that
much higher in males or are we just like onlydiagnosing the male like classic stereotypical
(17:58):
presentation? I think that there is a femalepresentation that looks really different from
males. But all of our like questionnaires andscreeners and testing and even the medical
diagnostic criteria are based on that malepresentation or male phenotype of autism. ah
But I think there's more research coming outon what the female presentation or female phenotype
(18:23):
looks like, ah which is really exciting becauseI think that like it's gonna capture more
people or females or people assigned femaleat birth um that don't usually get identified
until like middle school or high school willbe able to identify them a little bit earlier
and just have more supports in place for them. Cause that's kind of a common thing. Girls
(18:44):
or people assigned female at birth are notidentified until like maybe high school or
like if they're lucky middle school but usuallyhigh school or later on in life in adulthood.
um So I think that's kind of an interestingthing. And I'm glad that the world is moving
more in that direction. Like some of our questionnairesthat we use. So like one really common one
(19:07):
that I like to use is called the social communicationquestionnaire. And for that one, usually parents
are like a legal guardian will fill it out forthe individual. And we look for like a score
of 15 or more. But research has suggested loweringthat cutoff for females. So like if they score
a little bit lower, they can still meet thislike threshold that would be suggestive of
(19:30):
a diagnosis. So I'm glad that some questionnairesare starting to make the changes to meet the
more like female presenting presentation ofautism. Going further into that, like are there
other ways that diagnostic tools and criteriahave continued to evolve to reflect the diversity
(19:51):
within autism? Yeah, so I mean, Like I said,like they're starting to make a little bit
of changes, but we're still not there yet, whichis like, mean, again, I think it's more of
like the gender piece that we're seeing, stilla lot of the criteria, like I said, the criteria,
the like standardized tests that we have, the questionnaires are still based on that like
(20:15):
classic male stereotypical presentation. Sowe're not really there yet, but we're moving
in the right direction. And I think having more psychologists or whoever's doing the evaluation,
as long as they're getting more education aboutthe female presentation, rather than having
more of that narrow kind of male view, thinkthey're gonna be able to capture the diagnosis
(20:37):
a lot more in females. But yeah, we're stillmoving target and trying to get up to date
with that stuff. So it really depends on theclinician. Yeah. So after the diagnosis, then...
Is there a common emotional response or isit more case by case that you see and what
(20:58):
types of emotional responses do you see? Yeah,it's so interesting. um So I think, so if we're
talking mostly for adults, know, adults comingin are usually self-referred. Like they are
seeing it in themselves. They are questioning if they have autism. Sometimes like parents
are encouraging their adult child to go inand get evaluated, but You know, what's interesting
(21:23):
is it's harder to tell someone, no, you don'thave autism than telling them, yes, you do
have autism because the people coming in alreadyhave in their mind that they have autism and
they're, wanting this confirmation to like solidifythis diagnosis for them. So after I do the
testing and I'm like, yep, you know, everythingaligns with the autistic diagnosis, you know,
(21:44):
everything I saw, everything I heard reallymatched it. Like I'm diagnosing you with autism.
They're like, most reactions are like, Great.That's what I expected. Like it's kind of what
I was thinking would happen anyways. And, um,or there's a lot of like relief, like this
instant relief of like, Oh, finally, I feellike I have answers. And like, I like this
explains so much. And like, for a lot of peoplegetting that diagnosis, it just feels like,
(22:08):
like a relief, like this huge wave of validationof something they've struggled with. And now
they have something that can help them betterunderstand themselves. So, but what I've heard
is like, after that initial, like, wave of likevalidation and relief and like being happy
and I see tears a lot like good tears like happytears when I diagnose. I hear that there's
(22:30):
like a second phase that they go through oflike, oh wow, I'm autistic. So what does
this mean? And then they kind of go throughthe grieving process of, know, I wish I
had known this about myself when I was youngerbecause I would have had different supports
in place or like understood myself better, beenkinder to myself, or more compassionate. or
(22:51):
maybe found the right group of people who matched my identity. um There's a lot of grief that
goes into ah wishing they had a different youngerself. So the first wave, first reaction is
just immediate relief and happiness and justpeace. And then the second is integrating
that identity into their life and thinking abouthow things might've been different. And also
(23:14):
thinking about now that I have this, what doesthis say for me going forward? uh What are
the struggles that I'm gonna face now that Ihave a name for this? Like, what are my struggles
and how do I deal with them? So now it's kindof like, how do I address this head on? So
it is kind of like a multi-phased reaction fromwhat I've seen. But I do think the biggest
(23:34):
part is just relief and peace and happiness.And like I said, it's harder when I have to
tell people I don't think that they're autistic.Cause usually I have to... They're like, but
why? Like, I don't understand. Like, I feellike I do all these things and I'm like, well,
you know, from what I'm seeing and it's toughcause it can be really subjective. But like
(23:56):
when I see it, I'm like, well, you're showingmaybe some of these signs, but we're not getting
like the full picture. Like maybe symptomshaven't been present since before you were
five years old. um Maybe like they, it's moreof like a trauma reaction that has caused this
rather than it being a neurodivergent condition. So it's harder to tell people, no, you're
(24:19):
not autistic than to tell them that they are,which I think is kind of interesting. Cause
I think a lot of times the negative view waslike, people don't want to like, if having
a diagnosis of autism was like such a horriblething, it was viewed so horribly. Like if parents
were like found out that their child was autistic,they'd be really, really upset. It's kind of
funny how it switched. Yeah. I mean, it's goodthat it switched. Exactly. Exactly. So we kind
(24:45):
of. started talking about this, how can gettinga diagnosis in adulthood change someone's view
of themselves or how they view their life andsurroundings? Yeah, I mean, I think that's
like kind of, well, just like the main reasonpeople are going for the evaluation in adulthood
to like rewrite themselves and like better likecope with their life and their environment.
(25:06):
um So I think for a lot of people that arecoming in for autism evaluations, they've had
hardships throughout their life. I think thatlike they're coming in because they've struggled
in some way, either if it's been socially throughouttheir life or academically or uh like in their
work or with family members or just like dealingwith even health issues, like gut issues or
(25:29):
like not being able to eat certain foods andlike they've been impacted in their life.
They've gone through a lot of difficulties. And so when they have something to explain
it, I think that can give a lot of relief. andthey can start finding more of that self-compassion
and empathy for themselves of like, insteadof blaming self of like, oh, I wish I would
have done this differently. Like hindsightis always 20-20. We can look back and think
(25:53):
like, oh, if only I had done this, but we canfind compassion and be like, well, I couldn't
have done this because I didn't know how todo this or people didn't understand me. So
like, it wasn't going to work out anyways. And even if I did do this, it probably wouldn't
have been a good thing for me. So I thinkthey're able to find more of that self-compassion
and empathy, especially if they've had challengeswith family members. you know, family members
(26:17):
didn't understand them and they thought like,oh, you're just, you're lazy or feeling like
parents feel like they're, they're weird orlike their kids need to go, like they wish
they had just like a quote unquote normal kid.Like go play with your friends, go have sports,
stop doing. this one, like stop focusing onall your books and reading all these things
or this video game, like go do things. Like I think kids can really internalize that
(26:42):
and throughout life just not feel good aboutthemselves. Like the messages that they get
in childhood and throughout adulthood, likejust feeling like they're just not good enough.
This can help them again, find that empathyand self-compassion for themselves that they
can just realize my parents didn't get it. Likethey... if they knew or maybe if they understood
(27:03):
this, they would have been a lot more supportiveand understanding and not made me feel bad
about who I am. Yeah. You kind of mentionedthis a little bit, but I do like, feel like
it's almost like a clean slate and like a freshstart to um themselves and their life. Absolutely.
And I think it could be really empowering becauseI think now once they have like this diagnosis,
(27:29):
they're like, okay, I'm autistic. What canI do to best support me being a neurodivergent
person in a neuro-typical world? Like, whatcan I do to advocate for myself and like, and
like make changes that are gonna work for them?Like if they need to create more routines and
structure in their life, or if they need certainaccommodations at work, or if they wanna be
(27:51):
able to communicate with their friends, like.I only have this much social bandwidth, you
so I can only hang out for like an hour or,you know, I can only do once a month kind of
hangouts. Being able to start advocating forthemselves and setting boundaries. It could
be really, really empowering for them to likefully thrive once they feel like they know
what they're doing or like they know that theyhave autism and they can move forward to best
(28:15):
support themselves. Yeah. For people kind ofon the other side of things. who are nervous
that getting a diagnosis will somehow changewho they are, what would your response be
to them? Yeah, I mean, I think how I view autismand how it is commonly viewed is that autism
is an identity. It's not something that changesthe person, it's just who they are. uh recognizing
(28:44):
that this is just how they've always been, theirbrain is wired in a different way, they just
think a little bit differently than others.nothing is going to change about them when
they get this diagnosis. It just helps themunderstand that they are different and different
isn't bad. It's just different. And that theycan better support themselves. Something I
always like to tell people though is for somepeople with autism, autism can be an invisible
(29:09):
identity. know, walking down the street, ifyou have autism, people might not know that
you have autism. It's something that you like.There are some autistic people who who can't
necessarily hide their autism. Like maybe theydo have uh like more of the like level three,
which is maybe a little bit more of those likemore significant challenges or like maybe uh
(29:33):
we see a lot more of the like common presentingsymptoms of like stimming in public or repetitive
speech or maybe getting like really upset andhaving like lots of meltdowns or those types
of things are not, or just like walking awayin the middle of conversations. Like some people
can't necessarily hide their autism, but Usuallyfor people that are getting diagnosed in adulthood,
ah they probably can hide their autism becauseif they couldn't, they would have probably
(29:57):
been identified earlier on. um But autism canbe an invisible identity. And I like to tell
people that it is totally their choice if theywant to let other people know. I think the
bigger thing is worrying about, now I haveautism. What does that mean for me in terms
of how I like? interact with people or tellpeople 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
orientation, that's something that you can chooseto communicate or something that you don't
have to communicate. But I do think that it'sa choice and knowing that nothing changes
(30:40):
about who you are. It's just, oh, here, we'vegiven you a label to classify how your brain
is wired differently. And you can let peopleknow you can. A big thing that I've heard,
and I have a number of patients that I've worked with in therapy and also that I've uh
diagnosed have questioned, should I tell myparents or should I tell my friends? And again,
(31:04):
it's really up to that individual. A lot oftimes people come in for their evaluations
because their parents don't believe them. The parents are like, what do you know? You're
not autistic. You're just, you're just a littleshy or you're just quirky or you're anxious
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 backto their parents and say like, Hey, yes, I
like had a doctor evaluate me and I do havethis. So I think, you know, it's going back
to the like, how will this change who theyare? um It won't change them, it's just who
they've always been, but we're just giving youa little like name for maybe like how your
(31:45):
brain is wired. It's just wired a little bitdifferently. um And being able to keep that
identity to yourself is a hundred percent upto that person um or sharing it with others
is up to them as well. um It's really, it'skind of a nice thing to be able to have that
choice if you want to. If someone thinks theymight 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
autistic, I think that's a great thing thatthey're already potentially open to this diagnosis.
Or if they're like nervous about it, like gettingmore education and research, researching what
autism can look like. There's a really wonderfulwebsite 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
ASAN, A-S-A-N. uh That is a website that iscreated by autistic people. uh So their motto
is nothing about us without us. So this wholewebsite 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
an autistic person describing it versus whatlike a neurotypical person feels is autistic.
and autism. So it's a great website. It'sgreat for families. It's great for understanding
autism. I am not sponsored by them in anyway. I think it is just like an excellent website
(33:12):
that I refer anyone that I diagnosed with autismor someone questioning it to go to that website.
And they have their own book that they wrotethat talks more about autism and what it can
look like. So I think that's a really greatplace to start. I would say don't hop onto
TikTok as your first place because if you goto 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
for health things. like, if you sit crisscrossedand you like to do this with your legs or
whatever, you might have this one medical condition.And so that's kind of how it is with autism.
They're like, if you... if you sleep with yourarms kind of scrunched under you, you might
(33:54):
be autistic. I mean, everyone's autistic accordingto TikTok. uh So like a great, I love that
there's like such great acceptance and peopletalking about it there. And like, that's wonderful.
But if we're really trying to get good evidenceand information, I think starting with Assan,
the Autistic Self Advocacy Network is reallygreat. And going to reputable sites like uh
(34:16):
NAMI, National Alliance of Mental. illnessand the National Institute of Mental Health.
Those kind of websites are really good and theyhave lots of links to other reputable websites
can be really, that can be really helpful. Yeah. Going back to what you said before, you kind
of talked about misunderstandings and assumptionswith family members. How would you say in
(34:38):
what ways can family members, friends, oreven professionals better support someone
who's going through the process of getting diagnosed or getting used to a new diagnosis? Yeah,
I think it's gonna be unique to each individualand each person. I think family members should
(35:01):
be open to what autism is and educating themselvesbecause I think a lot of times parents might
have more of that narrow view of autism. andmaybe more of like a negative stigmatized view
of autism. So educating parents and familymembers, friends can educate themselves on
more of the spectrum of autism, like what thatcan include versus more one end of the spectrum,
(35:26):
like that more stereotyped or stigmatizedversion of autism. So kind of expanding their
own view of what autism is. um I also thinklike trying not to minimize the individual's
experiences like, Um, you know, big, a bigthing that I'm really trying to advocate for
is, um, this topic called pathological demandavoidance. 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
avoidance. The pathological is just what they've,what they've added on. But they're finding
that this is like such a common thing for theautistic brain. So basically pathological demand
avoidance is like, let's say you're. autisticperson, like you're reading your book or doing
(36:10):
your thing or like focusing on something andsomeone comes in and they're like, Hey, I need
you to take the dog out. Like they really haveto go. Well, first off, there's like a, like
a, that unexpectedness of someone like justjumping, like you're in the middle of your
activity. You're enjoying it. You already havea plan to like, keep doing this. You don't
plan to be interrupted. And then that unexpectedpop 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,
that could be really hard shift. And then also just this feeling of, I don't want to do this.
And it could feel really hard to feel motivatedto do it because there's this strong need for
control. Like I just want to keep doing whatI'm doing, what feels good to me. So the person
(36:53):
might say no, or like get really upset, orjust like make excuses or whatever it might
be. But so the other person asking them to takethe dog out might view that as, gosh, this
person's so lazy or they never help out or like,gosh, why are they so stubborn? But really
it's just the autistic brain can't make thatswitch. It's a deep seated way of living or
(37:18):
feeling of this need for control and havingto switch unexpectedly and do something that
doesn't feel like they were planning to door wanting to do can be really, really hard.
having people educate, like families and friendseducating themselves on different aspects
of autism and it's not necessarily the personis lazy or they don't care or they're like
(37:41):
um too focused on their themselves and theirown interests. It's really just how their brain
is operating and how it works. I wish morepeople knew that because oftentimes family
members are really like um just frustrated withtheir loved ones with autism because they aren't
able to do the things that they want when theywant them to. So It's tough, but there are
(38:05):
strategies that can help working to reducethe demand avoidance and helping the person,
the autistic person be a neurodivergent personin a neuro-typical world. And it's like my
phrase. So there's a lot of things familiescan do and like working together with therapists
or like trying to create structures and routinesand understanding the person and figuring out
(38:27):
like why instead of like, like, why aren't youdoing this? Like what's what's getting in the
way of you doing this? Like, help me understandwhy this is difficult for you to do. So, like,
why, what's wrong with you? To like, what'sthe issue here? What's getting in the way?
Yeah. No, I think it's really important in generalfor 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
through. Exactly. Exactly. In general, whatdo you wish more people understood about an
autism diagnosis, especially ones that comelater in life? Yeah, well, I'll say the classic
like autism quote, if you've met one personwith 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
autism have sensory processing issues. Somepeople don't. Some people with autism like
things to be a very particular way, like don'twant anything moved. Some people don't, but
aren't caring about that. Some people um haveto 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
homework done and like very intelligent. Somepeople in the spectrum aren't that way. Um,
I think it's just, everyone is really, reallyunique. Like human beings are every, but every
human being is very unique. We can't just seemyself 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
sounds bad, but like, I wish people would stopusing the binary of like high or low functioning
because functioning is a spectrum. Like I canbe high functioning and like, you know, my
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 careof myself or like doing the things that are
going to be good for my body and my mind. Like just because I can be independent in certain
ways doesn't mean that I'm like perfectly fine.And I think that's true for everyone. Like
everyone has strengths and weaknesses in termsof the things they have to do in their life.
And I wish people would just stop viewing uhautism as like higher, low functioning. And
(40:45):
like, oh, you have the good autism or the badautism. think functioning is a spectrum, like
autism. And also remembering that like autismis not a bad thing. It's just a different way
that the brain works. And a big thing is likepeople, think the society needs to change
from like, oh, the autistic person needs tomanage themselves to how do we as a society
(41:07):
better support people with differences in theirbrain and how they function. um trying to shift
it from fixing them to how do we fix the system. To wrap up, if someone listening is just beginning
their own journey toward understanding themselves,what's the most important thing you'd want
them to hear? So I think someone starting totake this journey, I think that first step
(41:34):
in taking it a journey is awareness and wantingto improve your life. And I think that's already
a good first step. ah I do think as you beginto learn more about this and this process,
uh It might be harder than easier for some people.Like there can be some roadblocks or brings
up some memories that can be really upsettingor difficult, or we might feel really guilty
(41:55):
about ourselves or others, or, you know, itcan stir up a lot of emotions. uh But I think
understanding yourself is such an importantthing in terms of like living your best life,
having your best mental health and wellbeing.uh If you're able to like... Be kind to yourself,
understand that like this, that like you maynot have chosen things to be a certain way
(42:18):
and you were just doing the best that you couldin the situation. Finding that self-compassion
is important. And you know, with autism, it'snot a blood test. You know, it's nothing straightforward
to be able to say yes or no. I do think like,like therapy, you don't have to have a formal
evaluation to be diagnosed with autism. Therapistscan diagnose, psychiatrists can diagnose. ah
(42:42):
If you do want that formal evaluation, do alittle bit of research on the psychologist
that's gonna be doing it. Make sure that theykind of align with who you are because it can
be subjective. um I'm making a decision basedon what I see and what I hear, but that has
to go through my own mental filter. So it'snot 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
of yourself if that's with getting a diagnosisor just finding strategies to help yourself.
But I think self-awareness, self-improvementum is just a wonderful, wonderful thing for
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
wonderful. ah And I always love talking aboutthis topic. So thanks so much for letting me
talk about it and share my insights. Yeah, ofcourse. We really appreciate you helping our
listeners feel more informed and supported asthey work through their own paths. We hope
(43:51):
everyone takes away something valuable fromtoday's discussion.
such a great conversation with Dr. Hirsch. thinkshe hit on a lot of different good points.
Kel, are you ready to get into some of our listenerquestions? Sure! Alright, let's get into Ask
(44:13):
an Advocate.
first question is, how do I decide or know ifit's worth trying to get a formal autism diagnosis
as an adult? I feel like if you need help withanything, then it's worth trying. There's
(44:40):
specific things that you know you're going tohave to apply for. Mm-hmm. Yeah. The second
question is, relate to autistic experiencesI see online, but I don't know if that means
I'm autistic. Where should I start? It's agood question because like a lot of things,
(45:00):
especially on TikTok, I feel like are justlike, you do this random thing, you're autistic.
Yes. And may not necessarily be true. So Iwould see about talking to a... healthcare
professional of any sort, whether that's yourprimary care or someone more related to psychiatry,
(45:25):
but like kind of starting there. Yeah. How doyou handle the mix of emotions after getting
a diagnosis? mean, it can be difficult. just, it's good to have support. Even if it's
not human support, like you get it onlineor you have a furry friend or other kind
(45:52):
of pet that isn't furry. um You can do otherthings to help you process, like maybe journal
or just feel out how you feel. Yeah, I thinkthose are all really good options. Our next
(46:16):
question is, I'm worried that a diagnosismight change how my friends or family sees
me. How do I navigate that? I mean, it isgonna change a little bit, but it's still the
same you, you know? Right. And you're alsoalready 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.
Yeah. So I'd say if anybody reacts like extremelynegatively or treats you different in a bad
way, then... Well, first try to talk to themand be like, hey, what you're doing is hurting
(47:01):
me. That's not cool. And if they don't workto change, then that person wasn't meant to
be.
Our last question is, how can I connect withother autistic adults if I'm just starting
(47:22):
this diagnosis journey? Well, our website has great resources for this, links to different
support groups, or even just events happeningin the area. But if you're not from Pennsylvania,
then. I would start with Googling for autisticsupport groups in your area. See if there's
(47:49):
anything about that. Make sure if you're wantingself-advocacy to add that to the search, because
a lot of support groups can be for parents ofautistic people. And that's not going to
help us self-advocate. Right. Yeah. Especiallyif 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
type of question on the topic of our episode, please email us at info at paautism.org or
message us on our social media. Well, I thinkwe had a great conversation today. It was
(48:33):
interesting to hear about the diagnosis journeyfrom someone who actually facilitates diagnosis.
And it makes sense, but I wasn't thinkingthe first reaction to a diagnosis would often
be relief. I agree. We talked about a lot ofdifferent aspects of getting diagnosed, and
it was really comforting to hear. Like a lotof people have the same sort of thoughts or
(48:59):
feelings or struggles with having the diagnosisprocess. Yeah, I'm sure. We hope you've enjoyed
our conversation today. If you'd like to learnmore about autism diagnosis, we have several
different resources focused on the diagnosisjourney on our website, paautism.org. Some
of these resources include early childhood screeningand diagnosis, resources for a newly diagnosed
(49:26):
individual and understanding autism evaluations,to name a few. You can find links to these
resources in the description of this episode. Next month we'll be talking about relationships,
friendships, and building connection in general. If you have questions related to relationships,
friendships, or social energy, message us themon social media or email us at info at paautism.org.
(49:52):
We'd love to hear from you. We'll see you nexttime on Autism Unmasked.
Autism Unmasked is brought to you by the ASSERTCollaborative, which is funded by the Office
(50:13):
of Developmental Programs within the PennsylvaniaDepartment of Human Services.
So the first wave, first reaction is just kindof like immediate relief and happiness and
just peace. And then the second is kind of likeintegrating that identity into their life and
thinking about how things might've been different. And also kind of thinking about now that I
have this, what does this say for me goingforward? Like, what are the struggles that
I'm gonna face now that I have a name for this?Like, what are my struggles and how do I deal
(00:32):
with them?
This is Autism Unmasked, a conversational podcastfocused on exploring complex topics through
open, inclusive conversation.
(00:53):
Welcome back to Autism Unmasked. I'm Isabel. And I'm Kel. Today we are talking about different
aspects of the autism diagnosis journey. Thisprocess can be filled with relief, frustration,
and sometimes even grief. My diagnosis journeywasn't with autism, but the feelings I experienced
(01:13):
seemed like they would overlap. I was diagnosedwith a rare medical condition in 2017, but
had been experiencing symptoms for at leastfive years prior to that. It was really frustrating
and exhausting not knowing what was happeningto me or where to go from there. That's awful.
So sorry to hear that. So my diagnosis journey, I... and second grade was diagnosed with ADHD
(01:43):
and then I was medicated for that for a while and then I stopped taking that medication
because I didn't like it and my doctor saidit was okay. I checked and then I wasn't
diagnosed with autism until my going into mysecond year of college. That's a long time
(02:04):
to wait. Yeah. In between and like I knew somethingwas different, but I didn't know how to answer
it. Yeah. I'm sure it also makes you feellike, well, like, what's different? Am I
doing something wrong? Yeah. Or should I bedoing something differently? Yeah. Well,
(02:28):
we know every story looks different, but wealso know how powerful it can be to finally
have language for what you've been experiencing. That's what we're on masking today. The discoveries,
the detours, and the questions that diagnosiscan bring. So, without further delay, let's
get into our interview.
(02:54):
Today on our interview segment, AuthenticallySpeaking, we're joined by Dr. Keely Hirsch,
a psychologist who works extensively with autisticadults. We'll look at the clinical side of
diagnosis and what might come after in termsof emotions and self-understanding, especially
for those who discover they're autistic laterin life. Thanks so much for joining us today,
(03:17):
Dr. Hirsch. Can you tell us a little more aboutyourself and the work you do? Definitely. So
I'm really happy to be here because I love workingwith autistic individuals and just supporting
the autistic community. So I'm a psychologistat Penn State Health. um And my primary responsibilities
are conducting autism evaluations across thelifespan. So usually individuals anywhere
(03:42):
from ages of three and then up. Like I evaluateda 72 year old a couple of months ago. So really
any age um after the age of three. In additionto doing autism evaluations, I provide therapy
to autistic individuals, usually ages 15 andup who have like level one or level two autism.
(04:04):
um And so, yeah, those are some of my responsibilities.What made you... become focused on supporting
autistic eventuals specifically in your work?Yeah. I mean, I don't have like a very exciting
story. I wish I did, but um I, after I completedcollege, I started working as a therapeutic
(04:27):
support staff. doing in-home behavioral therapywork with autistic individuals, um usually
with like kids and teens and just helping supportthem and improving like some of the challenging
behaviors that they had. So in that experience,um What I found really interesting was the
dynamic between the parents and the child andhow they influence one another. So like if
(04:50):
the parents were happy and in a good mood, thatseemed to really positively influence the child.
And then if the child was in a good mood, that influenced the parents, but vice versa. So
if the kids were having a tough time, that wouldreally influence the parents. And then that
kind of influenced the kids. So this like cycleeffect that was happening, and that was really
interesting. And then I would see kind of theinteractions that the parents had with their
(05:12):
significant other spouse or the other parentof the child and how that influenced them.
ah So was really interested in just the familydynamics of it. So then when I was in my doctoral
program, I really wanted to learn more aboutautism and family dynamics and focused all
my training on understanding autism. And whenI did a lot of my clinical rotations, I got
(05:37):
exposure to doing autism testing and working with like college age autistic individuals
and adults. And that really was like the mostinteresting thing to me. So wanting to do diagnoses
and working with like adults are like the 15and up that I do. um Yeah, so that's kind of
been my interest in this and I've just kindof gone from there. You mentioned the family
(06:01):
dynamic of the diagnosis, getting into thediagnostic process itself. From your perspective,
what does that process typically look like forchildren compared to adults and what is similar
and what differs? Yeah, I mean, every clinicianor psychologist that's evaluating might have
(06:21):
their own process. I think what's generallyinvolved, and I try and do this for both children
and adults, is getting a really thorough backgroundhistory. So like hearing all about their development
and their life and different experiences throughouttheir life and their. academic history, social
history, medical, psychiatric, um and then in adulthood, I'll hear more about their adult
(06:42):
life and things that happened to them afterthey turned 18. uh And then another part of
the evaluation is doing some standardized testing, which is really like, this is what's kind
of different between children and adults. Sofor children, testing can be a lot more observation-based
where we do some interactions with the childand kind of see how they respond to us and
(07:04):
we like, look at for different behaviors withadults. um We don't necessarily do that like
really specific like observational based test,but there is a observational kind of interview
test where you're talking with the individualand asking them questions about autism, but
also kind of seeing how they respond to youand interact with you and kind of looking
(07:28):
for any kind of like social challenge cues orany kind of repetitive behaviors there. So
it's a little bit different. One of like themain testing, standardized tests that are used,
especially for children is called the ADOS,the Autism Diagnostic Observation Schedule.
And that is usually used from like toddlersall the way up to like, like adolescents and
(07:53):
maybe like young adults. I try to cut the ADOSoff. Like when I'm testing, I try not to use
the ADOS for anyone over the age of 25. Inthe autistic community, they've found that
it feels very condescending to use that in those interactions and activities that we do. I
totally get that. I use a different test calledthe MIGDIS, the Montero Interview Guidelines
(08:17):
for Diagnosing the Autism Spectrum. That ismore of that interactive observational, but
conversational testing that we do. You'renot just sitting there watching. Watching them
do things. Exactly. Yeah. And yeah, so that's a lot better. And then the last part of the,
so the two parts I talked about for the diagnosticinterview is like the really thorough background
(08:41):
interview, then doing the standardized testingwhere I like that conversation interactive
component and observational component. And thenthe third part is what I call a diagnostic
interview where I go through. I like to do thefull traits and spectrum or full traits and
features of autism spectrum disorder and seelike what behaviors and features a person might
(09:02):
have presented with. That also helps me figureout, they meet the medical diagnostic criteria
that we're looking for? um So usually for children,I'm relying heavily from their parents or like
their guardian to give me most of their information. A lot of times for adults, they might not
have a parent or they might not have that relationshipwith their parents. So a lot of the information
(09:25):
comes from that individual themselves. I reallydo try and have them bring in like a spouse
or a friend or like a sibling or cousin or someone that knows them pretty well that can give
what we call collateral input. So getting theirperspective, uh but it can be really hard.
And so it's not required for uh the adult tohave someone else there, but it is usually
(09:48):
helpful to feel really like. securing my decisionwith it. Yeah, that makes sense. Are there
certain signs or patterns that often get missedin childhood and are later recognized in adulthood?
So I think, you know, in recent years, we havereally been expanding how we define autism.
(10:09):
I think prior to like 2013, and I know that'sa really specific year, but in 2013, the medical
diagnostic criteria that we had for autism shiftedand it created, it went from like these different
types of autistic disorders like There was autisticdisorder, there was Asperger's syndrome, there
was something called persistent developmentaldisorder. Those different diagnoses were eliminated
(10:37):
and they all were bunched into a diagnosis calledautism spectrum disorder. Here, we're able
to see a greater range of symptoms and traitsand features of autism after 2013. I think
we're doing a better job at being able to expandhow we define autism and are able to like
(11:01):
catch things that we see maybe more in childhoodthat we wouldn't have seen before that we can
like identify people more now than we wouldhave prior to 2013. But I do think for adults,
ah know, when they're coming in, they haven'thad the evaluation. What we really see is
more of like the challenges in work. or in school, like if they're in higher education
(11:27):
past high school, or really feeling like theycan't connect with others. uh We see a lot
of what's called autistic burnout. So that'swhen they're just feeling so drained from the
needs and demands from their work or schoolor things in their life that there's a lot
of demands there, but they also have to dealwith sensory input challenges or feeling like
(11:51):
they don't necessarily understand the social cues or like just typical social expectations
and trying to also mask, which can be verydraining. So uh we see maybe a little bit more
of the like depression or like uh autistic burnoutin adulthood, maybe more so than we would see
with kids. I think in kids we're going to seea lot more of the behavioral issues like tantrums
(12:13):
and meltdowns uh and maybe aggression and thingslike that. But in adults, I feel like we see
more depression, anxiety coming out. Yeah, becausethey've been masking and like either don't
know that they're autistic or are trying tojust assimilate into, you know, what's expected.
(12:34):
Exactly. Exactly. Yeah. And as people get older,they learn more and more masking strategies,
like which can be helpful, you know, to helpthem feel like they can function a little bit
better. Like being and I always like to sayem being a neurodivergent person in a neurotypical
world. So they might be able to learn a lotmore strategies, but that's still putting in
(12:54):
a lot of effort and being conscientious of yourselfand others. So it can be a lot in draining.
Yeah. Going along the lines of adults and theirum diagnosis journey, how would you say that
self discovery or self diagnosis and uh an official diagnosis tend to overlap or differ? Yeah,
(13:19):
well, It's interesting. I've um been workingwith autism for, let me see, oh gosh, 15 years.
And that also includes when I was doing thein-home behavioral work. But there has been
just such an explosion of people learning aboutautism and wanting to better understand if
(13:40):
it's something that fits them. um And I thinkthat, you know, in the autistic community,
self-identification, self-diagnosis is becominga lot more accepted, which is wonderful for
people who either like can't access someoneto get to do the testing or they don't necessarily
agree with the testing process. Like that self-identificationis becoming more accepted in the community.
(14:03):
But um I do think that um like once people startidentifying more with the diagnosis, sometimes
they want that kind of confirmation or verificationthat they do have a diagnosis. It could feel
more validating for them to be like, yes, theprofessional has like gone through all my
information and has talked with me and has donethese tests and like has confirmed this diagnosis.
(14:26):
So it just feels more, maybe more authenticfor them. um And also like for some people
getting the diagnosis, they might be able toaccess certain like accommodations at work
or school or like have better conversations.uh with people in their life or find better
strategies. I do think that like uh self-discovery,like once you start going down the path of
(14:49):
learning about autism and how maybe it presentsin females or in like the less like stereotypical
way, people can identify with that. And thatcan already feel kind of like relieving for
some people that maybe like instead of it feelinglike, oh, I'm always the problem or people
just don't like me or I'm not good enough. Well, my brain just thinks about things differently.
(15:12):
And so maybe it's not necessarily like a meanproblem. Maybe it's just people just don't
like match how I think about the world and seethe world. um So I think that that in itself
can be a really nice like awareness. And thenwhen you eventually do go for the visual diagnosis,
if you, if people do decide to do that, it canbe really confirming and validating. Yeah.
(15:35):
I know just like from personal experience withhaving ADHD, like I know that I've struggled
with it since I was a kid and I've always kindof thought I maybe did and once I actually
got the diagnosis it was like a relief becauseI was like, okay yeah, I was right. Exactly,
exactly. Especially like when oh so many peoplewho like are not as familiar with autism or
(16:01):
ADHD, like these different neurodivergent disorderslike They can really minimize them, be like,
well, everyone's a little autistic or like everyone'sgot a little bit of ADHD or you're fine, or
it's just anxiety or like you just need to workharder. Like really kind of invalidating those
experiences can be really tough. So gettingthat confirmed diagnosis can just be like,
see, like, like proving it for ourselves andother people just being like, look, it's not
(16:24):
like just these like simple things in life.I'm like actually hitting a threshold where
there is significant impairment and I do needmore support. So how do factors like, if they
do, gender, race, or cultural background affectsomeone's ability to be recognized as autistic
in your perspective? Yeah. um Well, I do thinkthat, uh well, I like to say autism does not
(16:49):
discriminate. So anyone different race, ethnicity,gender can have autism. uh But in the past,
historically, people of color were under-identifiedand given more like, more severe diagnoses,
like, or like, I don't want to say severe, likemaybe more like stigmatized or negative, like
schizophrenia, like childhood schizophreniafor like African-Americans versus it actually
(17:12):
being autism. However, this has seemed to reducewith more awareness and education with autism.
And so, you know, I think it's becoming a lotmore identified in people of color and more
like appropriately identified versus peoplejust making assumptions that it's not autism.
Yeah. But I do think, so with gender, thinkthis is like, this is an area of really like
(17:36):
strong interest for me. um So the CDC reportsthat autism occurs three times more in males
than females. um And so, you know, I'm reallycurious about this. Like, is it actually that
much higher in males or are we just like onlydiagnosing the male like classic stereotypical
(17:58):
presentation? I think that there is a femalepresentation that looks really different from
males. But all of our like questionnaires andscreeners and testing and even the medical
diagnostic criteria are based on that malepresentation or male phenotype of autism. ah
But I think there's more research coming outon what the female presentation or female phenotype
(18:23):
looks like, ah which is really exciting becauseI think that like it's gonna capture more
people or females or people assigned femaleat birth um that don't usually get identified
until like middle school or high school willbe able to identify them a little bit earlier
and just have more supports in place for them. Cause that's kind of a common thing. Girls
(18:44):
or people assigned female at birth are notidentified until like maybe high school or
like if they're lucky middle school but usuallyhigh school or later on in life in adulthood.
um So I think that's kind of an interestingthing. And I'm glad that the world is moving
more in that direction. Like some of our questionnairesthat we use. So like one really common one
(19:07):
that I like to use is called the social communicationquestionnaire. And for that one, usually parents
are like a legal guardian will fill it out forthe individual. And we look for like a score
of 15 or more. But research has suggested loweringthat cutoff for females. So like if they score
a little bit lower, they can still meet thislike threshold that would be suggestive of
(19:30):
a diagnosis. So I'm glad that some questionnairesare starting to make the changes to meet the
more like female presenting presentation ofautism. Going further into that, like are there
other ways that diagnostic tools and criteriahave continued to evolve to reflect the diversity
(19:51):
within autism? Yeah, so I mean, Like I said,like they're starting to make a little bit
of changes, but we're still not there yet, whichis like, mean, again, I think it's more of
like the gender piece that we're seeing, stilla lot of the criteria, like I said, the criteria,
the like standardized tests that we have, the questionnaires are still based on that like
(20:15):
classic male stereotypical presentation. Sowe're not really there yet, but we're moving
in the right direction. And I think having more psychologists or whoever's doing the evaluation,
as long as they're getting more education aboutthe female presentation, rather than having
more of that narrow kind of male view, thinkthey're gonna be able to capture the diagnosis
(20:37):
a lot more in females. But yeah, we're stillmoving target and trying to get up to date
with that stuff. So it really depends on theclinician. Yeah. So after the diagnosis, then...
Is there a common emotional response or isit more case by case that you see and what
(20:58):
types of emotional responses do you see? Yeah,it's so interesting. um So I think, so if we're
talking mostly for adults, know, adults comingin are usually self-referred. Like they are
seeing it in themselves. They are questioning if they have autism. Sometimes like parents
are encouraging their adult child to go inand get evaluated, but You know, what's interesting
(21:23):
is it's harder to tell someone, no, you don'thave autism than telling them, yes, you do
have autism because the people coming in alreadyhave in their mind that they have autism and
they're, wanting this confirmation to like solidifythis diagnosis for them. So after I do the
testing and I'm like, yep, you know, everythingaligns with the autistic diagnosis, you know,
(21:44):
everything I saw, everything I heard reallymatched it. Like I'm diagnosing you with autism.
They're like, most reactions are like, Great.That's what I expected. Like it's kind of what
I was thinking would happen anyways. And, um,or there's a lot of like relief, like this
instant relief of like, Oh, finally, I feellike I have answers. And like, I like this
explains so much. And like, for a lot of peoplegetting that diagnosis, it just feels like,
(22:08):
like a relief, like this huge wave of validationof something they've struggled with. And now
they have something that can help them betterunderstand themselves. So, but what I've heard
is like, after that initial, like, wave of likevalidation and relief and like being happy
and I see tears a lot like good tears like happytears when I diagnose. I hear that there's
(22:30):
like a second phase that they go through oflike, oh wow, I'm autistic. So what does
this mean? And then they kind of go throughthe grieving process of, know, I wish I
had known this about myself when I was youngerbecause I would have had different supports
in place or like understood myself better, beenkinder to myself, or more compassionate. or
(22:51):
maybe found the right group of people who matched my identity. um There's a lot of grief that
goes into ah wishing they had a different youngerself. So the first wave, first reaction is
just immediate relief and happiness and justpeace. And then the second is integrating
that identity into their life and thinking abouthow things might've been different. And also
(23:14):
thinking about now that I have this, what doesthis say for me going forward? uh What are
the struggles that I'm gonna face now that Ihave a name for this? Like, what are my struggles
and how do I deal with them? So now it's kindof like, how do I address this head on? So
it is kind of like a multi-phased reaction fromwhat I've seen. But I do think the biggest
(23:34):
part is just relief and peace and happiness.And like I said, it's harder when I have to
tell people I don't think that they're autistic.Cause usually I have to... They're like, but
why? Like, I don't understand. Like, I feellike I do all these things and I'm like, well,
you know, from what I'm seeing and it's toughcause it can be really subjective. But like
(23:56):
when I see it, I'm like, well, you're showingmaybe some of these signs, but we're not getting
like the full picture. Like maybe symptomshaven't been present since before you were
five years old. um Maybe like they, it's moreof like a trauma reaction that has caused this
rather than it being a neurodivergent condition. So it's harder to tell people, no, you're
(24:19):
not autistic than to tell them that they are,which I think is kind of interesting. Cause
I think a lot of times the negative view waslike, people don't want to like, if having
a diagnosis of autism was like such a horriblething, it was viewed so horribly. Like if parents
were like found out that their child was autistic,they'd be really, really upset. It's kind of
funny how it switched. Yeah. I mean, it's goodthat it switched. Exactly. Exactly. So we kind
(24:45):
of. started talking about this, how can gettinga diagnosis in adulthood change someone's view
of themselves or how they view their life andsurroundings? Yeah, I mean, I think that's
like kind of, well, just like the main reasonpeople are going for the evaluation in adulthood
to like rewrite themselves and like better likecope with their life and their environment.
(25:06):
um So I think for a lot of people that arecoming in for autism evaluations, they've had
hardships throughout their life. I think thatlike they're coming in because they've struggled
in some way, either if it's been socially throughouttheir life or academically or uh like in their
work or with family members or just like dealingwith even health issues, like gut issues or
(25:29):
like not being able to eat certain foods andlike they've been impacted in their life.
They've gone through a lot of difficulties. And so when they have something to explain
it, I think that can give a lot of relief. andthey can start finding more of that self-compassion
and empathy for themselves of like, insteadof blaming self of like, oh, I wish I would
have done this differently. Like hindsightis always 20-20. We can look back and think
(25:53):
like, oh, if only I had done this, but we canfind compassion and be like, well, I couldn't
have done this because I didn't know how todo this or people didn't understand me. So
like, it wasn't going to work out anyways. And even if I did do this, it probably wouldn't
have been a good thing for me. So I thinkthey're able to find more of that self-compassion
and empathy, especially if they've had challengeswith family members. you know, family members
(26:17):
didn't understand them and they thought like,oh, you're just, you're lazy or feeling like
parents feel like they're, they're weird orlike their kids need to go, like they wish
they had just like a quote unquote normal kid.Like go play with your friends, go have sports,
stop doing. this one, like stop focusing onall your books and reading all these things
or this video game, like go do things. Like I think kids can really internalize that
(26:42):
and throughout life just not feel good aboutthemselves. Like the messages that they get
in childhood and throughout adulthood, likejust feeling like they're just not good enough.
This can help them again, find that empathyand self-compassion for themselves that they
can just realize my parents didn't get it. Likethey... if they knew or maybe if they understood
(27:03):
this, they would have been a lot more supportiveand understanding and not made me feel bad
about who I am. Yeah. You kind of mentionedthis a little bit, but I do like, feel like
it's almost like a clean slate and like a freshstart to um themselves and their life. Absolutely.
And I think it could be really empowering becauseI think now once they have like this diagnosis,
(27:29):
they're like, okay, I'm autistic. What canI do to best support me being a neurodivergent
person in a neuro-typical world? Like, whatcan I do to advocate for myself and like, and
like make changes that are gonna work for them?Like if they need to create more routines and
structure in their life, or if they need certainaccommodations at work, or if they wanna be
(27:51):
able to communicate with their friends, like.I only have this much social bandwidth, you
so I can only hang out for like an hour or,you know, I can only do once a month kind of
hangouts. Being able to start advocating forthemselves and setting boundaries. It could
be really, really empowering for them to likefully thrive once they feel like they know
what they're doing or like they know that theyhave autism and they can move forward to best
(28:15):
support themselves. Yeah. For people kind ofon the other side of things. who are nervous
that getting a diagnosis will somehow changewho they are, what would your response be
to them? Yeah, I mean, I think how I view autismand how it is commonly viewed is that autism
is an identity. It's not something that changesthe person, it's just who they are. uh recognizing
(28:44):
that this is just how they've always been, theirbrain is wired in a different way, they just
think a little bit differently than others.nothing is going to change about them when
they get this diagnosis. It just helps themunderstand that they are different and different
isn't bad. It's just different. And that theycan better support themselves. Something I
always like to tell people though is for somepeople with autism, autism can be an invisible
(29:09):
identity. know, walking down the street, ifyou have autism, people might not know that
you have autism. It's something that you like.There are some autistic people who who can't
necessarily hide their autism. Like maybe theydo have uh like more of the like level three,
which is maybe a little bit more of those likemore significant challenges or like maybe uh
(29:33):
we see a lot more of the like common presentingsymptoms of like stimming in public or repetitive
speech or maybe getting like really upset andhaving like lots of meltdowns or those types
of things are not, or just like walking awayin the middle of conversations. Like some people
can't necessarily hide their autism, but Usuallyfor people that are getting diagnosed in adulthood,
ah they probably can hide their autism becauseif they couldn't, they would have probably
(29:57):
been identified earlier on. um But autism canbe an invisible identity. And I like to tell
people that it is totally their choice if theywant to let other people know. I think the
bigger thing is worrying about, now I haveautism. What does that mean for me in terms
of how I like? interact with people or tellpeople 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
orientation, that's something that you can chooseto communicate or something that you don't
have to communicate. But I do think that it'sa choice and knowing that nothing changes
(30:40):
about who you are. It's just, oh, here, we'vegiven you a label to classify how your brain
is wired differently. And you can let peopleknow you can. A big thing that I've heard,
and I have a number of patients that I've worked with in therapy and also that I've uh
diagnosed have questioned, should I tell myparents or should I tell my friends? And again,
(31:04):
it's really up to that individual. A lot oftimes people come in for their evaluations
because their parents don't believe them. The parents are like, what do you know? You're
not autistic. You're just, you're just a littleshy or you're just quirky or you're anxious
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 backto their parents and say like, Hey, yes, I
like had a doctor evaluate me and I do havethis. So I think, you know, it's going back
to the like, how will this change who theyare? um It won't change them, it's just who
they've always been, but we're just giving youa little like name for maybe like how your
(31:45):
brain is wired. It's just wired a little bitdifferently. um And being able to keep that
identity to yourself is a hundred percent upto that person um or sharing it with others
is up to them as well. um It's really, it'skind of a nice thing to be able to have that
choice if you want to. If someone thinks theymight 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
autistic, I think that's a great thing thatthey're already potentially open to this diagnosis.
Or if they're like nervous about it, like gettingmore education and research, researching what
autism can look like. There's a really wonderfulwebsite 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
ASAN, A-S-A-N. uh That is a website that iscreated by autistic people. uh So their motto
is nothing about us without us. So this wholewebsite 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
an autistic person describing it versus whatlike a neurotypical person feels is autistic.
and autism. So it's a great website. It'sgreat for families. It's great for understanding
autism. I am not sponsored by them in anyway. I think it is just like an excellent website
(33:12):
that I refer anyone that I diagnosed with autismor someone questioning it to go to that website.
And they have their own book that they wrotethat talks more about autism and what it can
look like. So I think that's a really greatplace to start. I would say don't hop onto
TikTok as your first place because if you goto 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
for health things. like, if you sit crisscrossedand you like to do this with your legs or
whatever, you might have this one medical condition.And so that's kind of how it is with autism.
They're like, if you... if you sleep with yourarms kind of scrunched under you, you might
(33:54):
be autistic. I mean, everyone's autistic accordingto TikTok. uh So like a great, I love that
there's like such great acceptance and peopletalking about it there. And like, that's wonderful.
But if we're really trying to get good evidenceand information, I think starting with Assan,
the Autistic Self Advocacy Network is reallygreat. And going to reputable sites like uh
(34:16):
NAMI, National Alliance of Mental. illnessand the National Institute of Mental Health.
Those kind of websites are really good and theyhave lots of links to other reputable websites
can be really, that can be really helpful. Yeah. Going back to what you said before, you kind
of talked about misunderstandings and assumptionswith family members. How would you say in
(34:38):
what ways can family members, friends, oreven professionals better support someone
who's going through the process of getting diagnosed or getting used to a new diagnosis? Yeah,
I think it's gonna be unique to each individualand each person. I think family members should
(35:01):
be open to what autism is and educating themselvesbecause I think a lot of times parents might
have more of that narrow view of autism. andmaybe more of like a negative stigmatized view
of autism. So educating parents and familymembers, friends can educate themselves on
more of the spectrum of autism, like what thatcan include versus more one end of the spectrum,
(35:26):
like that more stereotyped or stigmatizedversion of autism. So kind of expanding their
own view of what autism is. um I also thinklike trying not to minimize the individual's
experiences like, Um, you know, big, a bigthing that I'm really trying to advocate for
is, um, this topic called pathological demandavoidance. 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
avoidance. The pathological is just what they've,what they've added on. But they're finding
that this is like such a common thing for theautistic brain. So basically pathological demand
avoidance is like, let's say you're. autisticperson, like you're reading your book or doing
(36:10):
your thing or like focusing on something andsomeone comes in and they're like, Hey, I need
you to take the dog out. Like they really haveto go. Well, first off, there's like a, like
a, that unexpectedness of someone like justjumping, like you're in the middle of your
activity. You're enjoying it. You already havea plan to like, keep doing this. You don't
plan to be interrupted. And then that unexpectedpop 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,
that could be really hard shift. And then also just this feeling of, I don't want to do this.
And it could feel really hard to feel motivatedto do it because there's this strong need for
control. Like I just want to keep doing whatI'm doing, what feels good to me. So the person
(36:53):
might say no, or like get really upset, orjust like make excuses or whatever it might
be. But so the other person asking them to takethe dog out might view that as, gosh, this
person's so lazy or they never help out or like,gosh, why are they so stubborn? But really
it's just the autistic brain can't make thatswitch. It's a deep seated way of living or
(37:18):
feeling of this need for control and havingto switch unexpectedly and do something that
doesn't feel like they were planning to door wanting to do can be really, really hard.
having people educate, like families and friendseducating themselves on different aspects
of autism and it's not necessarily the personis lazy or they don't care or they're like
(37:41):
um too focused on their themselves and theirown interests. It's really just how their brain
is operating and how it works. I wish morepeople knew that because oftentimes family
members are really like um just frustrated withtheir loved ones with autism because they aren't
able to do the things that they want when theywant them to. So It's tough, but there are
(38:05):
strategies that can help working to reducethe demand avoidance and helping the person,
the autistic person be a neurodivergent personin a neuro-typical world. And it's like my
phrase. So there's a lot of things familiescan do and like working together with therapists
or like trying to create structures and routinesand understanding the person and figuring out
(38:27):
like why instead of like, like, why aren't youdoing this? Like what's what's getting in the
way of you doing this? Like, help me understandwhy this is difficult for you to do. So, like,
why, what's wrong with you? To like, what'sthe issue here? What's getting in the way?
Yeah. No, I think it's really important in generalfor 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
through. Exactly. Exactly. In general, whatdo you wish more people understood about an
autism diagnosis, especially ones that comelater in life? Yeah, well, I'll say the classic
like autism quote, if you've met one personwith 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
autism have sensory processing issues. Somepeople don't. Some people with autism like
things to be a very particular way, like don'twant anything moved. Some people don't, but
aren't caring about that. Some people um haveto 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
homework done and like very intelligent. Somepeople in the spectrum aren't that way. Um,
I think it's just, everyone is really, reallyunique. Like human beings are every, but every
human being is very unique. We can't just seemyself 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
sounds bad, but like, I wish people would stopusing the binary of like high or low functioning
because functioning is a spectrum. Like I canbe high functioning and like, you know, my
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 careof myself or like doing the things that are
going to be good for my body and my mind. Like just because I can be independent in certain
ways doesn't mean that I'm like perfectly fine.And I think that's true for everyone. Like
everyone has strengths and weaknesses in termsof the things they have to do in their life.
And I wish people would just stop viewing uhautism as like higher, low functioning. And
(40:45):
like, oh, you have the good autism or the badautism. think functioning is a spectrum, like
autism. And also remembering that like autismis not a bad thing. It's just a different way
that the brain works. And a big thing is likepeople, think the society needs to change
from like, oh, the autistic person needs tomanage themselves to how do we as a society
(41:07):
better support people with differences in theirbrain and how they function. um trying to shift
it from fixing them to how do we fix the system. To wrap up, if someone listening is just beginning
their own journey toward understanding themselves,what's the most important thing you'd want
them to hear? So I think someone starting totake this journey, I think that first step
(41:34):
in taking it a journey is awareness and wantingto improve your life. And I think that's already
a good first step. ah I do think as you beginto learn more about this and this process,
uh It might be harder than easier for some people.Like there can be some roadblocks or brings
up some memories that can be really upsettingor difficult, or we might feel really guilty
(41:55):
about ourselves or others, or, you know, itcan stir up a lot of emotions. uh But I think
understanding yourself is such an importantthing in terms of like living your best life,
having your best mental health and wellbeing.uh If you're able to like... Be kind to yourself,
understand that like this, that like you maynot have chosen things to be a certain way
(42:18):
and you were just doing the best that you couldin the situation. Finding that self-compassion
is important. And you know, with autism, it'snot a blood test. You know, it's nothing straightforward
to be able to say yes or no. I do think like,like therapy, you don't have to have a formal
evaluation to be diagnosed with autism. Therapistscan diagnose, psychiatrists can diagnose. ah
(42:42):
If you do want that formal evaluation, do alittle bit of research on the psychologist
that's gonna be doing it. Make sure that theykind of align with who you are because it can
be subjective. um I'm making a decision basedon what I see and what I hear, but that has
to go through my own mental filter. So it'snot 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
of yourself if that's with getting a diagnosisor just finding strategies to help yourself.
But I think self-awareness, self-improvementum is just a wonderful, wonderful thing for
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
wonderful. ah And I always love talking aboutthis topic. So thanks so much for letting me
talk about it and share my insights. Yeah, ofcourse. We really appreciate you helping our
listeners feel more informed and supported asthey work through their own paths. We hope
(43:51):
everyone takes away something valuable fromtoday's discussion.
such a great conversation with Dr. Hirsch. thinkshe hit on a lot of different good points.
Kel, are you ready to get into some of our listenerquestions? Sure! Alright, let's get into Ask
(44:13):
an Advocate.
first question is, how do I decide or know ifit's worth trying to get a formal autism diagnosis
as an adult? I feel like if you need help withanything, then it's worth trying. There's
(44:40):
specific things that you know you're going tohave to apply for. Mm-hmm. Yeah. The second
question is, relate to autistic experiencesI see online, but I don't know if that means
I'm autistic. Where should I start? It's agood question because like a lot of things,
(45:00):
especially on TikTok, I feel like are justlike, you do this random thing, you're autistic.
Yes. And may not necessarily be true. So Iwould see about talking to a... healthcare
professional of any sort, whether that's yourprimary care or someone more related to psychiatry,
(45:25):
but like kind of starting there. Yeah. How doyou handle the mix of emotions after getting
a diagnosis? mean, it can be difficult. just, it's good to have support. Even if it's
not human support, like you get it onlineor you have a furry friend or other kind
(45:52):
of pet that isn't furry. um You can do otherthings to help you process, like maybe journal
or just feel out how you feel. Yeah, I thinkthose are all really good options. Our next
(46:16):
question is, I'm worried that a diagnosismight change how my friends or family sees
me. How do I navigate that? I mean, it isgonna change a little bit, but it's still the
same you, you know? Right. And you're alsoalready 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.
Yeah. So I'd say if anybody reacts like extremelynegatively or treats you different in a bad
way, then... Well, first try to talk to themand be like, hey, what you're doing is hurting
(47:01):
me. That's not cool. And if they don't workto change, then that person wasn't meant to
be.
Our last question is, how can I connect withother autistic adults if I'm just starting
(47:22):
this diagnosis journey? Well, our website has great resources for this, links to different
support groups, or even just events happeningin the area. But if you're not from Pennsylvania,
then. I would start with Googling for autisticsupport groups in your area. See if there's
(47:49):
anything about that. Make sure if you're wantingself-advocacy to add that to the search, because
a lot of support groups can be for parents ofautistic people. And that's not going to
help us self-advocate. Right. Yeah. Especiallyif 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
type of question on the topic of our episode, please email us at info at paautism.org or
message us on our social media. Well, I thinkwe had a great conversation today. It was
(48:33):
interesting to hear about the diagnosis journeyfrom someone who actually facilitates diagnosis.
And it makes sense, but I wasn't thinkingthe first reaction to a diagnosis would often
be relief. I agree. We talked about a lot ofdifferent aspects of getting diagnosed, and
it was really comforting to hear. Like a lotof people have the same sort of thoughts or
(48:59):
feelings or struggles with having the diagnosisprocess. Yeah, I'm sure. We hope you've enjoyed
our conversation today. If you'd like to learnmore about autism diagnosis, we have several
different resources focused on the diagnosisjourney on our website, paautism.org. Some
of these resources include early childhood screeningand diagnosis, resources for a newly diagnosed
(49:26):
individual and understanding autism evaluations,to name a few. You can find links to these
resources in the description of this episode. Next month we'll be talking about relationships,
friendships, and building connection in general. If you have questions related to relationships,
friendships, or social energy, message us themon social media or email us at info at paautism.org.
(49:52):
We'd love to hear from you. We'll see you nexttime on Autism Unmasked.
Autism Unmasked is brought to you by the ASSERTCollaborative, which is funded by the Office
(50:13):
of Developmental Programs within the PennsylvaniaDepartment of Human Services.
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