Hello welcome to another episode of unpacking your queerness. This is your host George Mooney's gunned
Today I have another special guest on the podcast Jeff freed
Jeff is an autistic senior a late diagnosed autistic and ADHD
senior we met recently on a
During a autism a local autism support group an online support group and I
Invited Jeff to come on the podcast to talk a little bit about his experiences
And I'm going to be asking him a few questions without further ado welcome Jeff
Thank you welcome. Thank you George
This is this is
It was a wonderful half of the sense that we that we met
the autism group and
I'm looking forward to this. I've never been on a blog and I don't I
I can't remember
Anything like this in my life, so this is interesting nice. Yeah, I think it's it's a pleasure having you on and I
Yeah, so the first the first question I wanted to ask you today
Was is when when was the first time?
You noticed you were different and also well, let's let's just start with that. Well, when was the first time you noticed you were different
To be honest my consciousness of myself
Was very weak my sense of self was very weak
Looking back at it, I'd say I noticed there were things about social situations I
I
wished I
Were better able to handle but I couldn't articulate that to other people
I just knew that that that people would meet me and they
Hang out with me and I said interesting and then they didn't want to talk to me anymore
and I
Remember I had friends in the
I had friends. This was the
1950s in the early 60s my childhood and
There was
How do I say it was
Children were like ants back then we weren't just everywhere. We were in the post-war baby boom and
If you couldn't find a friend then you go find somebody else because there's millions of us. Yes
That logic turns out not to pay off but that's what the logic was
So I remember in particular the thing that this
Part is I couldn't stand being touched
Touching me made me feel very uncomfortable
And looking back at and try and understand what it was
I know that I had friends who enjoyed coming up behind me and tapping me
And I would freak out
Yeah
and
Well, it just brings back bad memories
It was I mean there was no autism that I was aware of back then in the 50s. I'm sure it was there. I'm sure there
Wasn't there wasn't as much awareness for sure
much awareness and
I also
I
Know my parents belong to a generation. They didn't see doctors. You saw a doctor as you're approaching death
That was the only otherwise, you know father to see them and I was very sick already and they never
They didn't they didn't have me see a doctor. In fact
one of the things that I think
Reflects all of the problems was I was 11 years old and I was losing the ability to walk
Mm-hmm, and I couldn't get worse and worse it got to the point. We're going up and down stairs
I would sit on the stairs. I would push myself up with my hands and then go stair by stair
My parents my parents took me to one doctor who said growing pains
That was it. That was a hard conversation and I went home and I remember it was
May and
My parents went out to play bridge and they played bridge regularly
They return them at bridge players and they went out to play bridge
They came home and I didn't I hadn't gone to bed. I and they left me on the couch. I stayed on the couch
And they said why didn't go to bed? I said I can't walk
I'm fine. I said, oh and he laid me out on the couch for the blanket on me and went to bed
the next day the
Doctor came to play bridge at my parents house. They said before I
Put in play I should take a look at your son. So he took a look at me and he said
We have to send him to the hospital
Yeah, and they said and he listed off a bunch of diseases all of which I was going to die from
Step one luckily, that's what I had
And they they they took me they sent me to the hospital by myself. I was 11
And it turned out I had rheumatic fever
Which was a disease that was that happened frequently back then more so my father's childhood
My parents just didn't deal with doctors. They figured you lived you died
Yeah, seeing a doctor wouldn't change that
It was it was it was not the best of times
Wow, yeah, thanks. Thanks for sharing that I I can I
Can understand that certainly because I I remember
hearing recently or reading recently about
how
people didn't go to the doctor very much back then and
It makes sense like
hearing your experience like
How that may have happened and
That must have been really
Frustrating to know that something was wrong with you and not
Get that you know not not have it
Be like looked into or taken seriously
A little a little but surprisingly ADD served me very well. I
Constantly forgot that I had problems
And so as long as I wasn't in the hospital
I constantly forgot that I had problems and so as long as I wasn't encountering the problems
Well as I wasn't walking up and down stairs as long as I was sitting in a chair. I didn't think about it
I just thought well, I'm sick. I had nothing to which to gauge against
So I'm sick and this is what you do when you're sick
I am
I just constantly forgot over and over again. I
Lost focus. I something else shining came up in my mind and that would work for my attention
Yeah
Yeah, I relate a lot it to like
The
Sensory stuff like I also I would get freaked out when people would just like touch me
suddenly or like unexpectedly or in certain ways or like
And then also just other little things like I noticed about myself
Before long before I knew that I was autistic was like sensory
Sensory
Processing and sensory like overload
Because I had sensitivity to lights
I had sensitivity to sounds and then I even like little things like I mean certain foods
I couldn't eat because I just couldn't handle and I still can't handle the texture of them
and then
also
My housemate doesn't understand when I say the texture matters to me. That's what's important. Yeah texture
He's not autistic
It's a flavor you idiot
It's hard. Yeah, cuz like they they don't
They just don't get it. It's like they I've had it like with the food thing also like
It's really hard
To get them to understand because I feel like people automatically think that I'm just being picky or that I just don't like something
To not like it, but they don't understand that
if I try to eat a certain food all
All like gag or like I can't I literally can't handle the texture and then even like I
Mean, that's just a big one that I discovered recent and even after being autistic
I discovered that it's actually an autism thing because I didn't I feel like I didn't realize that
Or I didn't learn that or no one told me initially, but then also
Something I have with sand I have I don't know if you relate to that one, too
But like when I get sand in my in between my toes on the beach or something
I would get kind of irritated by it
and
I love going to the beach. I love seeing Lake Erie
I love the fresh air
Yeah, yeah, and I never really understood that was just another one
because you were talking earlier about like
Feeling certain things and not understanding like with socially for example like
Feeling different feeling certain ways or feeling like certain ways and not understanding and that that was a big one for me with
The sand like I I knew that I had like I felt that way
and
I didn't understand. I thought it was just a weird thing about me that I didn't
Like sand or that the sand bothered me because I remember I would notice like that my sister who isn't autistic
Would not have that like she would I mean that's just one example
but like I guess it's one example of like all these little things that
we notice the people around us don't seem to
Experience in the same ways
Yeah
What were some of the things what were some of the things that um?
You
You you found that you were pretty good at like in terms of
Like special interests and like things like that
I think
First of all in school the only thing I did well at was math
I
Science a little bit but
We didn't really do science, you know in
K-12 you you you but what little science we did I adapted to that
I I thought I adapted I felt more comfortable most comfortable with facts. I
like facts and
I didn't like I didn't like an example
People often talk to me about later life about but you do science
So you must have loved puzzles as a kid because science is about puzzles. I
Said no, I actually hate puzzles
Boring and empty I
Want I the puzzles I want to solve our things that we actually need
not things that we just make up for the fun of making up and
and I
Later in life
gained in appreciation for
Practicing
Can I want you to I I well I should say
I should be honest. I did psychedelics. I didn't know what they do to me, but during the 60s
I tried acid and I must have dropped it over a three-year period. I probably dropped it once every other week
And it opened my mind it changed me I
Started to I
Didn't realize it then but I started doing something I later learned to do
Recently, which I learned to feel before I think
So I took me a while to figure out when someone says to me Jeff. How you doing? They're not asking for an assessment
Well, I think my toes are fine, but my hair is funny and they're not interested in that they're interested in a
conversation opener to say you're feeling good and bad having difficulties and
It's about how you feel not how you think
Yeah
And what I learned through acid was to feel before I learned for the first time to feel before I think
and that was new
But I didn't if you'd asked me Jeff did you what what did you learn on this acid trip?
I'd say I I don't know I
I couldn't articulate it. I
I it took me a long time
To learn how to be introspective
There's there's an old saying it's used in psychology
by child psychologists it says
children reveal
Before they reveal
before they reflect
That I did that into my 60s and 70s took me a long time to learn how to
reflect on
What was going on with me?
participate
Anyway, I'm sorry. I think I've gone on too long. No, no, that's that's good. It's very good and it's uh
very interesting to hear also about your experience with
Um with psychedelics, um because I do I do hear
from a lot of new neurodivergent people autistics adhd etc
that
They have it also like from a lot of us. It tends to be a very mind-opening
experience
Can I make a one one small suggestion just in case anyone's thinking?
Uh, well jeff jeff said I can be psychedelic just not saying that
And jeff is also going to say
Jeff did them the wrong way
There was no instruction manual back there in the 60s
And people were dropping very strong doses of lsd
And while they may have been good lsd in the sense that they were chemically
safe
um, uh, they're like
Like osley's acid was considered chemically safe
Um, we were doing it the wrong way what we should have been doing and I think there are people now
promulgating this viewpoint is we should take
Microdoses until we reach a dose level where we just barely noticed it. Yeah, then we can decide for ourselves
Is this where we feel comfortable?
We can continue with that rate or we can increase it or decrease it but we're in control
Instead we were doing large doses. I get slammed off the ceiling. I'd walk across I I was flying through the sky
And when I get done, I if someone asked me well, well, how was it? I I have no idea
I I I just I battered my head against the wall
Now I know if you do it starting from the low dose
And working your way up slowly to the high dose higher end doses where you feel comfortable
Then you can take
That dose live with that result for a while until you understand it
Thanks
And I I know there are some people who say you're gonna you're trying to let your cognitive part of your brain
Control the non-cognitive part of your brain
Yes, that's what it's there for
Yeah, that's what it's there for. Yeah. Anyway enough of that. Uh, but yeah, that's uh, I look forward to the in the um
uh
They're they're now trying to get mbma
through
through uh, um
um the house or senate and and it's it may be the way the psychedelics
become a
Standardized sometimes I get out of use become standardized
Maybe anyway
um
I wanted to ask you. Um
What were like specifically about like social um socialization struggles and such?
what were some of the
hardest or
most confusing things that you experienced early on like in terms of like
unspoken codes and norms and and
different ways of communication
well
The biggest one is because i'm gay
Um
But I didn't know like everyone who's gay. There's a time you you don't know and there's a time you do know. Yeah, I
didn't know
and
My encounters with gay people
People were not
All that good at first
because
I was out of sync with the popular viewpoint of what it meant to be gay
And I couldn't discuss it with anyone
Because it was not cool to be gay
so
Uh, and and i'm still trying to formulate in my head
Am I gay? Am I this am I paul lind? You know paul lind was
paul lind
He was a tv
comedy actor
and
He was
camp from beginning to end
And and I and I kept saying
I'm not campy. Does that mean i'm not really gay? Is it what is that anyway?
And I had no
Well, it's only later in life in my 30s
When I moved to san francisco
And uh, I shared a house with other gay friends
And then I began to say okay, we're not all paul lind. We're not all camp
We're maybe we're something new
So
That was but that's something I can only see in hindsight. I couldn't see it back then
It's it is
I think we take for granted popular thinking about
Uh about a subject and we think that's that's that defines it
And it didn't yeah, it didn't at all and it was confusing for me
Yeah, definitely. I think it it happens a lot with a lot of things
In society is that we're taught to view things a certain way
and it doesn't always it's not always the way they are and
like
we think like because I feel like I I feel the same way about like
queerness and like how
How there's this belief that it's like
There's only one kind of being gay
Or being queer and like you said it not everyone is the same and also to autism
I feel like you know, there is this idea in society
Or a lot of people hold the belief that autism
like autistics only
like a person has to have like
only a certain combination of traits or or only like a certain
presentation to be autistic and that's also very not true because they're
even though
autistic people like
process have
Their unique ways of processing and seeing the world every autistic person is different
Um, so yeah, I can relate
I can relate a lot to that. Yeah
Yeah
Actually, you you you it's funny
I get moment while you were talking and I don't want to make you self-conscious, but I'm gonna show you
You're using your hands the way I do
And I I came from a town in bopper new york where I was raised and certain
European groups used their hands others didn't
I came from one that used their hands and I felt comfortable with people use their hands
I later found out a friend of mine where I live in san diego said you should watch out how much you use your hands
You're making people feel uncomfortable
said what
How can you make someone feel uncomfortable passion?
Yeah, that's how no I know. Yeah. No, I can I wow that's
that's cool and that's I mean that's cool about like the
That that reminded you of that and and it's
I think it's also just an example of how like
In like because like as a form of of stimming like how how that's one of the things because it's interesting like my sister
I had this other stim like I did the thing with my hands
And then I had this other one where I would come when I would get really happy or really excited about something
I would um
I would like grab my chin
and
Um, my sister never
Understood that and I think it made her uncomfortable and I remember growing up
and now she understands and she'll like
She like looks back on it and she realizes now
But it's just funny because she would always give me a hard time for doing that. She like
You know, why do you grab your chin? Why do you do that?
And and how yeah because people aren't used to seeing it because it's been like
It's like
It's been viewed as like something uncomfortable, but it's really like at the core of it like
when you just
view it for itself, it's really an expression of
Joy, it can be yeah
Yeah, um, absolutely
So, um, yeah, what was um kind of on the same topic of self-discovery and stuff?
um
Tell us a little bit about what it was like getting your adhd diagnosis in your 40s
That was
What I can remember of it because it was a time when I wasn't remembering things
um
as
I knew I was different
And I was uncomfortable
And I wasn't socially connecting with people
Uh, and I thought it was because I I easily angered
But it wasn't angry. It was I was passionate and I always believed if you're not passionate, you're not alive
I didn't realize that not everybody
Can be this animated. They don't feel comfortable with it
But I I do yeah
and
I saw a psychiatrist
and the psychiatrist did a simple test
for
What's the word for it for?
Um
Impulse control
That's where they have a computer program
And you're sitting there told to click on a certain a certain thing that you see and don't click when you don't see it
and
Because we're impulsive
We'll click when we shouldn't yeah
and
I remember him doing that
And I didn't think much of it at the time
But he said he did that and he did some other things
And unlike unlike autism
And autism they're often using historical evidence. They're asking you
What did you do in these situations? How did you do that?
Because as adults
With autism we've learned tricks
To get around these these differences
and and and
So I I would say
I was 48 and and he said you have a dd you you are
That's pretty clear. You have impulse control
and uh
I still didn't know what it meant and then I tried neurofeedback
So I so I i'm going in I have a dd whatever that is
I do neurofeedback. It's where they hook up wires to your head
And then you try to control the screen by how you focus
The screen and what they did was it would play movies, but it would only play the movie
If you focused
And so over a period of weeks, I learned to focus because before then I couldn't focus very well
I didn't know that
Now I know that so I and and then it became interesting for me because I could do it
I was conscious of it. I was I was conscious and I was conscious of the effect. I felt different
Instead of being my usual agitated self
I was
calm
And I rather like that it was it was nice. Yeah
Yeah, but if he had told me that if he had told me that
I wouldn't have understood what he's talking about. I had to
it's like uh
You understand if you understand apple pie
You understand apples when you eat apple pie apple coddler
Uh learn to juggle apples um pick apples then you know what an apple is, but if someone describes it as a red fruit
Yeah, you don't know what it means
Yeah, I can definitely
See that like not
Not knowing like not having
Had an apple before or even held an apple
You don't really have you only have a scent like you know the term
but you wouldn't know what it is and then
I I can also relate to like
Knowing that
Certain things are related to adhd or that certain things are related to autism
And then catching those things or like you know, i'm
Like you know like because in the past
like if if I were in sensory overload and
And I were able to catch that and identify
Why it was I might have been more
I might have been calmer. I I feel like sometimes it is really helpful to identify like why
I'm feeling something because I feel like especially like as an autistic person when I can't figure out
What is going on and why it makes me more distressed?
So that I can definitely see that being helpful. Yeah
Yeah, I I it also helps and I think I think it's along the same line
We can talk about this a little later if you like
If you can be around other people who are autistic yeah help me
absolutely
Because then because then I because then I suddenly realized
Unlike them they're not bothered by me. Yeah, they're not they're not going to reject me because I'm autistic
Oh, you're a terrible person. You're autistic sure. I'm autistic, but you're really autistic
They're not going to do that and and that made a big difference for me
And being a software engineer I ran into tons of people
Who were very difficult to deal with and I was difficult to deal with
And we all had autism
Yeah, I have read that um, like in in software engineering there
Are likely a lot of undiagnosed
Autistic people that it's like one of the fields that
Autistic people it draws us. Yeah the screens
I'm hypnotized by the screens and all that information coming at me. I love it
Yeah, yeah, no, it's really uh, what you were saying about community too is really important. Uh, it's been one of the main
Benefits for me also like over the last few years
Connecting more with other autistic people that
Experience
Like the
Experience like see the world in similar ways and process things in similar ways and
And really it it's validating like every time I go
I join an autism meeting group or whatnot or i'm just even if i'm just talking one on one with other autistics
Even like on my podcast or wherever
It's just there's something very validating about the conversation
Because it almost always
Is a lot like
We're both just relating a lot to each other and
It makes us feel more understood as well. I think knowing it's just like
Because you feel like less of an outlier. Like you said, it's you're not bothering anyone around you because we're all
You know
Doing the same kind of things and like behaving in the same kind of ways
Yeah, yeah
I understand them and through understanding them or at least I feel I understand them
And through feeling I understand them. I feel they understand me
Yeah, it's it feels reciprocal. Yeah, I rarely do I do I encounter especially those autism like autism group that we met
I don't
I don't know any other place where I feel as understood
I don't feel as seen
As I do there. Yeah
How on the same general kind of topic in in terms of like socializing and such
What were your experiences like with dating?
Over the years. Well
Well, first of all, I should point out
Even into my 30s and 40s
I could go to a party
And I would talk tech with people because I didn't know how to talk about anything else
So social connection came
It came for me in my 60s
Um
I
Had to do with
Really learning how to feel before I think
And in feeling my own feelings for me
I began to feel
About other people what's going on with them?
And was I accurate? I stopped I stopped worrying about being accurate
I started to learn I I
Learned I taught myself. I learned however you want to say it
that um
It's interesting. I suddenly felt I should I should apologize because I'm not looking at you
I'm looking away to the right which is what what autistics do
I don't think your typical understand we do this because it's less confusing. Yeah, otherwise, I mean obligated to respond to your movements. I mean
We couldn't have a conversation to be changing every second exactly
um
so so
Great. I lost track of what I was talking about way to go
We were just talking about
Oh socialization. Yeah
Yeah, and so I had
It took me a long time to learn good socialization rules not the
Hello, how are you? Okay. I say hello. How are you back? And you know not the signaling kind of crap, but
actual social moves
As an example one thing I never understood until
Late in life was when I had straight friends who would tell straight straight
Neuro typical friends who would tell me oh he does that because he's so and so and such and such
I said, how do you know he's there?
How do you how do you know that that person that way? Yeah, it was such depth
Because I can't do that. I haven't I'm clueless
I'm now learning how to do that
And that's a good thing
That's when we should raise constantly
With children so we have little children say and the child says what about this that and the other say what do you think he meant by that?
What what do you think is going on with him that he said that
And then letting him go ahead and explain things doesn't matter whether they're right or wrong
It's how he sees them and then helping that child learn
How to interpret the world around them
No one did that for me, but then again the apple doesn't fall far from the tree
My father probably was autistic
And I remember my father
loved acting
The reason he loved acting was because he didn't have a personality that he understood of his own
And so he learned to be other people
And he can be he can be
Wonderful likeable people he could be mean people he can be all sorts of different people
Yeah, I that's uncomfortable. I think
That's why I a big part of why I got into acting also and
Like because I feel like I was I think a lot of it
I mean, obviously I always like
Liked
Being able to play different characters, but I feel like a lot of that
Came from masking because I had to
put on
This mask so often just on a day-to-day basis and you know studying the
behaviors of other people and and
The nuances and like how how they perceive things how?
How they communicate how people interact and all these things and and then
Applying those to myself. I feel like I was trying on different
Costumes or different characters and I feel like even tweaking sometimes like I would
I would do I would do something this way and see how it went and then I would try a conversation another way
And see how it went. So I feel like it was kind of like different characters
like of the mask and
And that kind of also
Like what you you were when you were talking about your dad being really into acting as well. It was
It was resonating a lot like that feeling of like
how I feel like
Like the masking and everything made me like that and then also other people that I've talked to like with ADHD and
Autistics have have felt the same way
We never my father and I didn't talk a lot and we never talked about that
But I remember he played Willie Loman, death of a salesman
and and and I was like
Salesman and and and I suddenly realized
He was a salesman
That's how he earned most of his living
He started a business manufacturing jewelry displays and he was out selling and hawking his jewelry displays
So he got to play himself in a way
Yeah
And I think I think he
Would have been an interesting conversation for us to have
I was the only one in the family who was interested in acting but he wasn't interested in talking to me about it
anyway
There we are
I
Were
Some what would you say some of our are some of the main things?
Uh that have changed around autism and ADHD awareness these last couple decades
All right, so we're starting from nothing no awareness whatsoever
and
misdiagnosis
We call it childhood schizophrenia
I think
What changed for autism actually changed
For all mental diseases
All mental disorders, that's I'm not sure I come down. I don't say disease disorders
I say disease disorders
And that was
There was more of an openness to actually understanding
What was going on?
as a as the road
to providing
a more a
more comfortable life for the person
and
that
Because I remember as a kid
I remember the popular view then was you fixed people
Who were looked at as problems to be solved?
So so your autism I I think in some ways I was better off
Not getting any help
Because it would be the wrong help
And and they try to give me a list of things to remember to do
Uh, I think that we've changed we we've realized now that change comes from within and it comes from understanding
Yeah, and and we may have different levels of understanding
But those levels of understanding are what you have to work with and that's where real change comes from
Yeah, it comes from respecting people too
Yeah
There's still people out there trying to fix gay people
True it's true and and there's a lot of um
Connection with
Uh with uh gay conversion therapy and
ABA therapy for for autism and and it's the same
ABA is applied behavior analysis. Oh, it's
Uh like the it's the more
And well known autism therapy out there now and it is exactly
It is basically
From what i've read they they um
They uh keep
autistic children from stimming and
forced eye contact and
Um, I mean I think there now it is changing also it's it I think the the
Traditional ABA was really
Harmful because it punished
Children for for like not making eye contact and stimming and so on
And I later came to discover
that
The same person that created ABA therapy was the person that created gay conversion therapy
um
So I definitely seen that strong resemblance. Yeah
Wow
Wow, yeah
Remember that one. That's awful. Yeah
Um, yeah, and but but i'm i'm also hopeful of how
How society seems to slowly be
moving in a in a better direction a better direction like as
With both queerness and neurodiversity
With both starting to be more more widely accepted and understood now and and I think particularly with autism
historically there has been
a lot of
stigma and in the way that people view
autistic people or autistic traits, um
I feel like there's also
it's so unfortunate that it's
A lot of times
Someone might not even know
That the other person is autistic. I read that there's like actually a study that was done recently that
a lot of people have
a lot of internalized bias
against
like autistic behaviors like so
If someone meets an autistic person, um
But doesn't know that they're autistic
Their
Their percent they usually have like a negative perception or a negative opinion about them
and
And then like a lot of times that changes if they if they learn that the person is autistic
but it just speaks to like how
There isn't much
Understanding about like different ways of being or behaving
And how like the autistic way even if the person does know like
Even in some situations if someone does know that i'm autistic
Like how like my way of of of doing things like, you know, not making eye contact or
Or stimming is viewed as wrong
and or has been viewed as wrong and I
i'm glad that that's
Starting to shift now. Yeah
Yeah, I I
Looking back at it. I realized there are lots of things I was doing
And I had no idea where they came from
Uh, and uh as an example when I was in the hospital with rheumatic fever, I was hospitalized for two months
I nearly died
and I was born to tears
They had to keep me isolated because they were afraid I might have somebody communicable
That's how they dealt with things like that back then
and
I I sat around juggling my massage. They have a massage
uh, they give you because you're lying in bed so long and you prevent bed sores and they they
I took the bottle and I would spin it
I'd sit there for an hour or two just spinning the bottle
Because it was comforting to me. Yeah
There's a stim
And things like I I still do this. I hold my hands. You can't see it, but I hold my hands a certain way. Yeah
Because it feels comfortable. Yeah, and I don't know why it feels comfortable. I know that
I know that as a kid
We never fixed up our basement, but we had an old couch down there I would go down in the basement and I would do this
I would rock
Because it was a good chair. It wasn't a rocking chair, but I could rock and I was rocking and I would hum
And I would make up songs
And I I felt very very comfortable doing this
And I didn't tell anybody else
And I got my privacy. I knew I knew I needed privacy
So there's some awareness. I knew
This was not appropriate. This is not going to be acceptable
and and and my mother
Not out of meanness
But I remember several times she would bring laundry down to the basement where the laundry washing your dryer were
And she would walk by me and I'd be humming and rocking and she said why don't you go outside?
Just just go outside
They were never gonna they're never gonna ask the question. Is this wrong? Is this something you need help with anyway?
Um
Or like why understanding why you were doing it right or like yeah. Yeah
Um understanding that I had no understanding
If they could have have an understanding
That I had no understanding and then realized maybe we need to talk to a professional who can give me the understanding
Yeah
Because they didn't they didn't uh
I'm reminded with the add that I got a late diagnosis 68 because I couldn't focus long enough
To realize I couldn't focus long enough
Yeah
And so and so you know there's the I think my parents were worried
If you if you open up this this this pandora's box
Of jeff's rocking and the other things he does then they're gonna have lots of problems to deal with better. You just don't open the door
How were your parents with that
I feel like
I feel like early on um, they knew that
I
had like some neuromotor differences and
I mean they noticed like
That I had some neuromotor differences and then I had um
I had some like like like a sense of cerebral palsy
No, just I think more
more just like
related to like
tying knots and stuff and uh
Just like stuff like that like I had to do some physical therapy and then speech therapy
um, like I had speech delays
but there wasn't
I don't think they thought it was
They realized I don't think they realized that it was part of something bigger. It was like uh
Like you know because it related it tied into the sensory
Sensory sensitivities and social sensitivities, but I think not the best part of it
Sensitivities, but I think not to blame them, you know, because there just wasn't as much understanding back then but
I think that
These things were all viewed as like separate things
and
I think in retrospect I wish that all of us
Had more information
About about it just as from a perspective because then we would have been able to get
Help and support not not just about like getting help and support because even that I feel like sometimes
Would be hard to like advocate for accommodations at school and stuff, but I think also
Because it would make us understand ourselves a lot more and
I
think for every person out there that wasn't able to
To discover their autism or adhd
Until recently there seems to be
Including myself there's part of it. That's kind of a grief of like
I want like if I had known sooner, I wouldn't think of myself
As like a broken neurotypical
And and I would just realize like oh, okay
I'm this is because I'm autistic and this this like this is related to autism
like this is related to autism that is related to autism and
Yeah, it would just give me a better picture, but I know that my you know
Um, I know that you know, there's no you know, there are no no simple cures offered no no
So so
Still the knowledge was worthwhile. Yeah, exactly. Yeah, but it's it's just the way things have evolved
Like I know that back then
Um
It just wasn't
It wasn't as understood like I didn't um
I don't know. It it just wasn't the way things like i'm still glad that I was able to get
Support for a couple different things individually, but it was just there were other things that
There wasn't much support and they're like sensory stuff. I don't know like they're
Um that they're just I didn't understand why and I think even just understanding why it can be helpful and sure
um
Can I make a parallel sure if you're doing an ad?
The one thing you can do very very quickly is try the meds
Even if you don't ever use them beyond there and you'll see
And you'll instantly feel different
And you'll know that difference and you'll know that you can't do it on your own
It's very very difficult. You know, there are very very few therapies like neurofeedback where you can actually change the brain
And and but but knowing that you have a very solid understanding because you've eaten the apple
You've taken the pill. You say oh my god, I feel calm. I I feel connected
Uh, I I can do these things
Autism doesn't have that
Autism may have
One day, but it doesn't have enough. Yeah. Yeah, I can see that
Definitely. I think um
I I kind of like forgot a little bit earlier, but um
Where I was going but now um, I remember
What the autism?
I think that that that's a big reason that of why
I
didn't
Realize I was autistic like uh until much later until I was 16
Which is still
relatively early, um compared to a lot of people, um, but
But like
The social because that was more related to the social
Like the only reason I went to get um
um to get evaluated for autism
Was because I started struggling in school socially or and and showing
a lot of burnout and
exhaustion from school and like um
Not not specifically
Academically even even though there were with the adhd there were subjects even though I didn't know about adhd yet
Like I can see how there were some things that were
because of adhd with certain subjects that I couldn't engage with but I what was happening a lot when I was a teenager was
I had struggles socially
um and
on the side like
We knew that I had a lot of subjects that I was like really into and really good too and
And so I was diagnosed originally with aspergers in 2010
um
Which was pretty much
I mean which is now known as autism level one, but
I feel like the main things that led to the diagnosis what were
the fact that I struggled in school because of the like
particularly socially like I think that was the main thing that led to that diagnosis and
I had to have the experience of struggling socially in school
and then
coming home and
and then my parents like noticing those struggles over time and I feel like
Yeah, I feel like
Maybe I wouldn't have gotten like if if
If I hadn't um
If my parents hadn't decided to
Like to seek out and if we didn't have the resources to seek out a diagnosis or an evaluation
I might have I can see how that might have gone unnoticed even longer
Um and I actually forgot to ask you earlier
I was like
Yeah, um, and I actually forgot to ask you earlier after I asked you about your adhd diagnosis. I forgot to ask you
about how
20 years after that you ended up getting the the autism diagnosis
That that was a that was a
Some what if a fool's errand I was seeing a psychologist
Uh, we weren't making a lot of progress through one-on-one therapy. I didn't have a diagnosis
of autism
My add was under control
Um, I I
I don't know why
but I
Somehow in the conversation with my therapist
The idea of being autistic
arose
And I said, well, what would it take for me to have somebody who knows what they're doing?
In a diagnosis, he said he knows a guy and I could go to see him. So I said I'd go to see him
I ended up paying five
thousand dollars
With inflation in today's dollars, that's probably closer to ten
Uh for a diagnosis
He he he did a full assessment and um, I was diagnosed with
And um, I was diagnosed with um
Pdd nos
persistent
Um, uh developmental disorder
Not otherwise specified
Which is a real catch-all for uh, you know something wrong. I don't know what it is
And it's not very useful
uh, however
Um, because I was around people with autism and I began to see my behaviors in them
uh
and I saw
The difference between them and neurotypicals
I saw myself better and I
I said, all right, so
Uh, I mean because because really looking back at it
What they're trying to do is
Historically have you the person who has potentially?
autism
Now tell someone else
How you recognize your own autism?
Because that's what that ends up being and that's not really
Uh a great way to diagnose these things. That's why they don't do it. That's why a lot of doctors will and a good doctor
Usually will say
Act as if you have
And then respond to it accordingly
But don't don't waste your money on a diagnosis because it won't help you except some people need the diagnosis
To see in order to get help
That's that's part of the deal but then I was
I was I was uh 68
Which was nine years ago
Oh my god
and and
It was
It was not useful I I I feel I should say this so someone listening to this understands better
There are people
Who have a need
Who do not have but need a diagnosis in order to get
medical or
Medicaid or
Any one of those things and that's that's a real problem
Because they just don't have a good way of testing for them because you've learned to mask
Mm-hmm. Yeah, that's where all you you've learned to I don't say that I've learned to pause
I've learned to pause and hold back. I don't I don't I don't I don't let my mind just just let loose with ideas because
It has consequences
It's I mean
When I learned how to feel before I think
It changed who I was as a person
And so now if I now when I say I'm autistic people say we don't sound autistic
Tell me tell me what it sounds like yeah exactly
Right horn
Trombone what what is it? What does it sound like? Yeah, because I feel
Like it came up earlier like people
have a very very narrow views of what they feel autistic people are
supposed to look like or sound like but
One we just talked about earlier is a good one
I didn't know how to look someone in the eye when I talked with them
Mm-hmm. So I once I learned that's a problem. You're doing it Jeff
Here's and and and and and they did it non-judgmentally
They said it's part of autism and then I watched other autistic people doing exactly the same that same thing
I went out of my way to change
I decided I was going to connect with people I had to
See eye to eye with them
And I was willing to you know, I made an effort so I changed so I don't have that problem. Does that mean I'm not autistic
No, so I just think I'm just learning
How to make the best of it. Yeah, not let it not let it dominate my life. Yeah
Yeah, um, I mean, I think that's another
Like we also talked about it's another important part of
Having community with other autistics because then we don't have to worry so much about
masking
things like like holding eye contact and
Even though it's useful to
Be
To to to be able to use the masking
When we have to use it
And understand the neurotypical codes and languages
When we have to use them with neurotypicals, it's always refreshing to be able to
To to be able to unmask with other with other autistics, too
And it surprises me
You know people say well, then you can get over your autism. I really I use that phrase terrible phrasing on purpose
If terrible phrasing on purpose when I started talking with you, I went right into the mode where I wasn't gonna look at you
Even though i've worked on that for years when I don't think about it. I go right back to
Look at me
Yeah, which I think is like also it's a bummer that
There's not as much on that. There's so much
Emphasis on eye contact out there in the world because I feel like if it weren't one of those things that's so important
to neurotypical society, I feel like we would be a lot more relaxed because I feel like
having to
It may it makes us like
Worry, you know it creates this anxiety like having to
Worry because i'll still do it sometimes like even with other autistics, too
And then i'll remind myself. Oh wait, I don't have to
but it's like
it I look back and
It's yeah, I just wonder what it would have been like if I didn't have to
If it's not something that I had to worry about or I had to be told like so many times that I wasn't
making eye contact because then
Because it does create sort of like that anxiety
But it it also it's also what makes it nice to to remind ourselves when we don't have to do it
Yeah, yeah, absolutely
Something that uh
I was just thinking about
When we were talking about socializing and everything and
Have there been people in your life that
You've become comfortable
over time disclosing that you're autistic and and then
Have they like with the understanding of of why you struggle with eye contact or whatnot
in the same
In kind of a similar way of how us autistics kind of understand that about each other automatically
Have there been people in your life even non-autistic that have been able to understand that more?
And have you felt less pressured to mask around them?
Well
Now you make me wish I'd done done things a little differently. I never pressed the issue. I
I to be honest, I've always felt
And wrongly so in some cases
I've always felt
Like an outsider like I can't ask things of other people
Uh and and and for various reasons there's an example
I have a site. I'm a sister who's a phd psychologist
It took me it took me a long time to ever mention to her that I i'm autistic
She wanted to play doctor and fix me and
I don't think even if she has the skills for it and she doesn't understand she doesn't get the skills
I i'm not sure how to articulate to people that
You know, so I told people I was in a different group
I was in a gay men's group and I said sometimes when I talk i'm going to talk i'm going to look away because it's easier for me
and and
I think they
I made them uncomfortable
And I was leading the group
So that was kind of bad
Um, uh, it's a lot of other things. I think the problem for me is it's asking something of others and you know
As one psychologist said aren't I allowed to claim a little space?
And that's that's a good question because in truth
I don't know
Yeah, I think I mean I think it speaks to how like a lot of uh,
Have been societally taught to not
Ask ask for help or ask for understanding or to like
Internalize a lot of our our struggles because I certainly did that myself as well and i'm only really
Starting to
Unpack it now and um, it's it's I always enjoy talking to other autistics as well about their own
Experiences with all that
Yeah, yeah, it's
Our culture is very much a you're on your own second up
Level
And and they they look at anything else as being lazy or
Really mean about it. Yeah, exactly. There's there's very little understanding
Yeah
And because of that very little little empathy, yeah, and then one thing too, which is very ironic because we
like I've autistics
Usually get get the
We don't have empathy, but to me a lot of times it feels like
Neurotypicals
Um once again, uh, this was really really great, uh, um, i'll let you go now, but um,
Thanks once again for coming on
My pleasure. Thank you
I really enjoyed it. This is uh, this is a good adventure. Please let me know when you post this. I will i'll send you the link
And everything in the email
Yeah, I will
And I have a technical question these are bone conduction
Bone conduction, all right, so they're not in my ear. Okay
Yeah, they're very light
But I sounded okay
Oh you sounded good. Yeah, I could hear you. Okay. Yeah
Okay
Awesome. Well, thank you very much. Thank you and thank you everyone for listening
I hope you enjoyed this episode and i'll see you all next time