The Journey From Fear to Pride

From being unable to say the word "autism" aloud to embracing the term "severe autism," James Gutman shares his transformative seven-year journey with his son Lucas in this heartfelt episode. He recalls a pivotal moment when someone referred to his non-verbal son's condition as "the real autism," triggering both offense and reflection about how we label and understand neurodiversity.

James takes us through his evolution as a father and writer, revealing how his blog "Hi Blog, I'm Dad" (launched in 2017) chronicles their journey from fear to appreciation. He describes the early days of struggling to explain his son's silence to strangers, followed by years of growth that changed his perspective entirely. Rather than defending against pity or judgment, James now focuses on celebrating Lucas's unique way of experiencing the world—from the gentle finger games he plays with his sister to the fascinating way he studies his own hand in the sunlight.

The episode offers rare insight into parenting a child with severe autism, balancing the clinical realities with moments of pure joy. James reflects on how Lucas brings him happiness even during challenging moments, and how his son's unfiltered emotions have taught him to live more authentically. With his book "Hi World I'm Dad: How Fathers Can Journey from Autism Awareness to Acceptance to Appreciation" launching soon, James invites listeners to understand that while labels serve their purpose, they never tell the complete story. Pre-order his book now on Amazon to join him on this continuing journey of discovery and appreciation.

It's Here! Get the book – “Hi World, I’m Dad: How Fathers Can Journey to Autism Awareness, Acceptance, and Appreciation” on audio, digital, or print.

Follow Us On Facebook and YouTube. Follow James Guttman on Instagram.

Also, be sure to read the blog that started it all - Hi Blog! I'm Dad.

Episode Transcript

Speaker 1 (00:14):
Hi Pod, I am Dad.
He's not just Hi Dad, he's mydad, james Gutman, just hi dad,
he's my dad, james gutman.
Folks, it's james gutman, it'sipod, I'm dad.
Welcome back to another editionof the podcast.
It is episode, I guess 251.
I thought it was 250, it's not,I don't know.
Either way, thank you forjoining us.

(00:35):
It is uh may.
It is nice outside.
It is.
The birds are singing, as usitalians like to say.
It's a thing.
So thank you so much for beingback here on the podcast.
Yeah, so this week I wrote aboutsomething that I don't know.
It's been in my head, I'vethought about it, I've read

(00:56):
about it more, I've heard aboutit more.
It's the whole idea about theterm severe autism.
Right, and I thought about thisbecause for the longest time,
there was this kind of thiswhole thing of when I would tell
people that Lucas had autism.
There would be a questioning,and I think I've told this story
, which I thought was insanely,insanely rude.

(01:16):
I even said it on Jubilee whenI was on.
If you guys don't know, I wason Jubilee.
They did a show about a show.
I sound so old, what do theycall them Videos?
I did a broadcast with Jubileeand I told the story about this
woman.
She was a teacher, she was likea principal I think, and I had
worked many years ago.

(01:36):
I worked at Orange Theory,right At the front desk.
I don't think I ever named theplace.
Am I allowed to deny RightOrange Theory?
And I worked in the front.
Name the place.
Am I allowed to deny OrangeTheory?
And I worked in the front andthis woman came in and she goes
oh, I heard about your son.
He has autism.
And I was like oh, yeah.
And I was like he's nonverbal.
And she goes oh, that's thereal one.

(01:56):
I was like wow, I was offended,like viscerally offended, and I
didn't know why, because I mean, here she was telling me I'm
okay, but now I'm thinking likewhat the hell?
Who I don't know?
It just felt weird and eversince then it's always been kind
of an extra step in explainingmy son to people who don't know

(02:21):
him, to people who don't knowhim, which is why, at the end of
the day, you just have to knowhim.
You see him, you're around him,you understand him more.
And then the term severe autism,which I don't know if it's been
around for a long time orsomething new.
I had read it, I had seen itand I thought that describes

(02:50):
Lucas.
Lucas has a lot of pronounceddelays and I feel like the term
itself it's a lot like autismwas.
I tried to explain this in theblog, like I talked about when
he was young, I was hesitant tosay autism out loud.
I didn't want to say it outloud.
I actually wrote a blog calledSaying Autism Out Loud and it
was the idea of the first timethat I finally got to say to a

(03:10):
cashier who had said hello to myson.
I was able to say, oh no, he'snot going to respond to you,
he's non-verbal, he has autism.
Whereas there was a time wherewe would both sit there and
stare at him, me and the cashierand I would think in my head
he's going to say hi back to theguy.
He's going to say hi, and itwas after a little while and I
would take his hand, I go hi andI feel like an idiot and leave.

(03:32):
Those are the early, early daysof kind of coming to grips with
.
This is autism and in that timeI didn't really know what
autism was.
I didn't know how it affectedme.
I didn't know how it affectedour family.
I didn't know how it was goingto affect Lucas.
I didn't know what was going tohappen because of this thing
that I was taught to fear andtold to avoid and scare tactics

(03:56):
and government panels or whatnot.
And eventually I was able tosay it and get good with it and
understand it and appreciate itlike I do now.
Severe autism the term itself Iget kind of that same feeling
where I know it accuratelydescribes my son.
I talked about this.
Now I think one of the thingsthat makes me so kind of proud

(04:19):
and frustrated all at once isthat, especially following my
Huffington Post article that Ihad written about not wanting a
cure for Lucas's autism, a lotof people assume that he's
higher functioning than he isand there's a part of me that
feels like frustrated becauseI'll get lectured from people
like you know, some familieshave to, you know, have care for
their child for the rest oftheir lives and I'm like, yeah,

(04:40):
you're writing to him right now,like I know, I know this fear,
I've written about it Adult careand being concerned about, you
know, his long-term plans.
That's part of my life, theday-to-day things that you think
of when you have a child withsevere autism.
I have those in my day-to-daylife with Lucas Things I have to

(05:01):
do for him still that Ishouldn't have to do for him,
things like that.
That's a reality.
So I know unlike before where Ihad that visceral reaction to
saying the word autism out loudbut I think a lot of that might
just be kind of like the term.
It just sounds so harsh, right,but I get it.
That's who my son is, that'swhat he has.
I don't know If it helpsdescribe him to people and they

(05:25):
need those labels and they needto understand him.
Cool, all right, that's who heis.
And I've struggled with this,you know.
Again, go back to the Jubileething.
I remember I'd come out in thebeginning.
One of the first questions wasyou know, I don't like the term
disability.
And I came out and I sat andpeople were surprised.
They're like why did you?
I came back and people asked methey're like why are you really
?
You didn't.
You don't like the termdisability for him.

(05:47):
And I thought to myself I doand I don't like.
I get that it has to be, I getthat you have to have that, but
I don't know.
I just feel like he's differentI, but I think he was all
differently able.
I mean, there's just we have toput a name on everything.
I just think he's a great kid,but the thing is I've evolved
right.
I've I've grown with him.

(06:07):
A lot of my early days ofwriting this blog and this
journey that I've taken has beenthrough the years and going
here and going there and kind ofgrowing with Lucas and learning
about Lucas, lucas and learningabout Lucas.
I have my daughter too.
It's been about my kids fromthe very beginning.
Hi blog.
I'm dad.
I'm a dad.
These are my kids.
My kids come before absolutelyeverything and since I began
this blog in 2017, you've seenmy life change.

(06:29):
I was married when I began theblog and different things that I
had going on after.
You know my heart surgery.
So you've seen these throughthe years and you've read Lucas
Grow in my life through thisblog.
This blog has been around.
Highblogondadcom has beenaround since February of 2017.
And since then, lucas has grownseven years.

(06:51):
So he's gone from aseven-year-old boy to a
14-year-old boy and I've grownwith him.
And in the pages of this blog is, for me, kind of just this
description of our journey andit's been amazing.
It has gone from fearful things.
Early on I wrote about worryingabout him running away all the
time and running into danger.

(07:13):
I've written about all thegrowing pains that come with
raising any kid to the boy he istoday and I found the
appreciation along the way.
This blog was an autismappreciation from the beginning.
If you go back to the beginningof this blog, I think and I
thought about this today Ihadn't thought about this in a
long time.

(07:34):
The early days of this blog, Ithink a lot of the tone was
about not wanting pity and beingangry at people for pitying us
Because people would give youthat like aw and I'd be like how
dare you?
Like you don't know this kid.
I just had to channel itdifferently.
I feel like now I'm more oflike you know, I don't care what
you think, he's great, like Iknow this kid is great.
But back then I knew he wasgreat but I was more about being
mad at you for how dare youpity my kid when he's great.

(07:56):
But I've changed, we've changed.
The blogs through the yearshave changed.
My son has grown and you'veseen the backgrounds and the
pictures have changed.
The people and the pictureshave changed.
And the only constant from dayone, my daughter and my son,
right there in the very firstone I ever wrote well, we're not
superheroes again, don't pityus, don't put us on a pedestal.

(08:17):
It was always about aboutreality.
It was always about, you know,appreciating my own life and
trying to find really just thebeauty in things and what was
beautiful.
I use that word too much, man,sometimes.
I think what was beautifulabout it was I didn't have to
search too hard when it came toLucas.
You know other parts of life,you convince yourself and you
push.
Lucas was just there.

(08:38):
Lucas is just on display.
What you see is what you get.
Look at this.
And he would do things thateven to this day.
I'll watch him just kind of likelaying in bed.
I'll take his hand and I'lljust kind of like have it in
front of his face and let's beturning his hand slightly and
just kind of like looking at itas he turned it.
I don't know if he's bouncingthe light, I don't know.
I have no idea.
I try to learn it.

(08:59):
If I go in there, sometimeshe'll kind of stop or look at me
, but I still watch him, I stilltry to figure him out the
finger thing I wrote about.
Now again, hi blog.
I'm dadcom.
I wrote about severe autism andI also wrote this week about
taking him to the railroad fairright here on Long Island.
What's a railroad fair?
It's not about railroads, it'sjust a little fair.

(09:20):
At a railroad station they giveout key chains and there's that
truck that smells like harshsausage and while we were there,
we were sitting there and hewas doing the finger thing that
he does with his sister, wherehe's comfortable and just kind
of taking it in.
He takes your hand, he juststarts kind of like playing with
your fingernails and that'sjust sweet.
There's a sweetness to my sonand I'm glad that I made a

(09:44):
person like that for the world.
I mean, that's the thing thatmakes me happy.
I feel like he brings mehappiness.
He inspires me to write thesethings and to do these blogs.
He inspires me to get up everyday.
I write about other things too,man.
I I have, you know, full rangeof work that I do, and lucas
helps me smile all the time,honestly, all the time, even
when we have like a disaster,even if, like the worst thing

(10:05):
happened, they break somethingin his room or whatever he's
like over it as I'm cleaning itup, irate, and he's just like
laughing and he's picking myface up and I know people hear
that that must be so annoyingand like sometimes, but like you
can't, it doesn't stay that waybecause he doesn't get it.
You can't be like, get away,he'll come back.
So it doesn't, there's noeffect.
So I know right from thebeginning, I'm like all right,

(10:26):
I'm not going to be able to bemiserable doing this as long as
he's in the room.
Sometimes I'll send him out ofthere.
I not a beautiful thing.
I don't know what is man that'slike and that's who my son is.
And that's what I want to shareand that's what we've been
doing since 2017, writing thisblog, doing this podcast since
2019.
It means the world to me, guys.

(10:47):
It really does.
And, like I said before, we area month away from high world on
dad, how fathers can journeyfrom autism, awareness to
acceptance, to appreciation, andI can't wait to share with you
guys.
I'm getting I know I've said itforever that there's more news
about this coming.
I'm telling you right now,within the next two weeks, I'm
gonna have some big news aboutHigh World, dumb Dad the book.

(11:08):
If you haven't done yet, you canpre-order it kind of anywhere
you want.
I always send people to Amazon,why not?
It's the easiest one for me.
Wherever you want to get it,get it.
Thank you, let me know what youthink.
Yeah, this is a big deal for me.
I'm very excited about it.
Thank you for taking the timeto listen to this podcast as
well.
Thank you for the blog.
Thank you for everything.
I'm grateful.

(11:28):
I'm happy.
It's a new day.
Breathe again, until next time.
James Gutman saying bye Pop,I'm out.

(12:20):
Thank you, I'm out.