Jenny Crawford, Co-founder of Autism Advocate Parenting Magazine:Journey Through Autism

Welcome to Why Not Me the World? Podcast hosted by
Tony Mantor, broadcasting from Music City, USA, Nashville, Tennessee. Join
us as our guests tell us their stories. Some will
make you laugh, some will make you cry. Real life
people who will inspire and show that you are not
alone in this world. Hopefully you gain more awareness, acceptance,
and a better understanding for autism around the world. Hi,
I'm Tony Mantor. Welcome to Why Not Me the World?
Today's guest has so much information and there is no
way that we will be able to get it in
one episode. So I'd like to welcome Jenny Crawford. Thanks
for coming on, Jenny, and if you would give us
a little of your background.
Sure. My name is Jenny.
I'm a co founder of Autism Advocate Parenting Megasinene. I'm
mom of five children, my twelve year old my oldest
is autistic, turning thirteen soon. I'm just so happy to
be here and to share with you whenever i can
that will help you on your journey.
Thanks. I really appreciate that. So you have a twelve
year old son, he's autistic. What age was he diagnosed?
Yeah, that's an interesting question.
When he was little, I was a first time mom
and I did not know that there was anything I'm
going to say wrong with him. But that's not the
terminology I would use now, but that's what I would
have used back then. And I had actually a couple
of individuals from my family, my mom and my sister
and some others come and approach me and you know,
share with me that they thought that Joseph needed to
be tested and to see if he's meeting his milestones.
You know, a lot of parents in the that I
hung around with just said, you know, boys develop late.
It's okay, he'll come around.
And that's just what I believe because I had never
been a parent before, and so when they came and
approached me, I took it very seriously. At first, I
was completely devastated. I felt like I was a failure
as a mom. How could I not notice that he
was in need? You know, how come am I just
so focused on work and other things that I'm not
noticing my child's needs? And so I you know, that
day that they came to me, I dropped everything and
called around, caught him in all the wait lists to
be evaluated and to see if there was something that
we could do.
To help him. So that was when he was about,
I would say, turning three years old.
What was some of the things that you saw on
him that made you decide that you needed to see
what was going on.
He had all of the traditional signs of autism, you know,
he flapped his hands, he had delayed speaking, he'd turn
in circles, stand on his tippy toes, constant meltdowns. But
again I was just I didn't even see it, and
I felt so ashamed for not seeing it. And so
I got him evaluated from a number of different places
for cognitive function, for his speech, like there were a
lot of waiting lists for a lot of different skills
on top of waiting for an autism diagnosis. And I
remember back at the time, I didn't want him to
have an autism diagnosis. I didn't want a label to
be placed on him. Not that I was ashamed of
the label, but I didn't want it to affect any
part of his future.
And so I remember member going to everybody.
In silos, not telling each practitioner or the person evaluating
the full story. And it wasn't until he was a
little bit older several years later that I really realized
that I did his service for him, and had I
had that autism diagnosis, and everybody was on the same page,
maybe we could get him, you know, even more help
than he was getting at that point. And so then
I sought out an autism diagnosis from a child psychologist
and went through the process.
It's interesting you use the word ashamed. I've spoken with
many mothers and they've gone through similar emotions. They've wondered
if they did anything wrong, did they drink anything, eat
anything with the environment they were in caused their son
or daughter to be autistic. Of course that wasn't the problem,
that wasn't the issue at all. But did you go
through any of those similar situations where you felt that
emotional stress.
Actually I didn't, and I've learned a lot now through
the magazine and different research, different things that you can
affect autism. But I never questioned that of myself. I
more so questioned my lack of realizing something was going
on for a number of years and just thinking it
was typical development.
You also mentioned that you was hoping that he wouldn't
be diagnosed autistic. I was speaking with a father the
other day and when his son was diagnosed, they felt
a complete relief that he was autistic because it took
the weight off his shoulders, that they weren't bad parents.
Yeah.
Absolutely, I feel like a lot of parents do feel
that relief. And with myself, it's like I knew he
had or he was autistic. I just didn't want the
label because I thought that he would be judged, he'd
lack certain opportunities, and I I thought myself, as a mom,
let me try to work my best with him as
best as possible and help see him through his challenges.
But I really did come to the determination later. No,
he needs that autism diagnosis so that he can he
can get the proper support from all the different teams
on the same page.
That makes so much sense. Does he or did he
have meltdowns during his younger years and if he did,
has he gotten better with them? Has he grown out
of it? How's he doing now on that front? Oh?
Wow?
So when he was little he used to go into
a turtle shell. Then he would cover his head and
go under the desk at school and try to hide
when he was really really little, around two years old,
three years old. If we were at an early year
center and we were playing with other kids and toys,
wasn't He was always by himself playing and if anybody
had Thomas the Train, he would be stealing Thomas the
Train and he would be melting down because nobody else
could play.
With that toy.
So we really struggled with that for quite a while.
He has grown out of it. He still gets frustrated,
and I don't want to say he's grown out of it.
We've worked really hard to help him with that challenge
and to work with a number of different people, including myself,
to help him with all of his different challenges.
Well.
As parents, that's what we have to do. We have
to work with our kids to help them develop, grow,
get through their challenges, and learn life. With autism as
a factor, it makes a little more difficult. What needless
to say, We don't give up on them. We keep working.
He's my life, he's everything to me. In fact, when
I found out that he was autistic, although I didn't
get him the diagnosis right away, I quit my job,
I quit everything, and I stayed at home with my
son and I would play with him for six to
eight hours a day on the floor every day, helping
him to make connections, helping him through the challenges he
was going through. And I would have to say that
was the best time I've ever spent in my life.
I cherish those moments so much. They were hard, but
they were worth it. And I feel like, if you
put in, you either put in the work now or
you put in the work later. And so I put
in the work very very early on, even without the diagnosis.
I took it upon myself to say, you know what,
I'm going to get him the help individually from all
these different practitioners, but I'm going to watch what they're
doing and I'm going to go mimic that and do
that at home because I don't think, you know, an
hour therapy here or there is really going to help
unless I'm consistent in the home. And so I took
him upon myself to do that for him.
Well, that's very impressive and inspirational for anyone listening, because
you have to put your kids first and sometimes that
requires a certain amount of sacrifice, and sacrifice is not
always easy. So, now that he's getting older, how would
you describe him? Is he more of an introvert or
an extrovert? How does he get along with people.
He's a combination. He had several friends that are close
friends that you know, he likes to play with. And
it's funny because he was an extrovert a little bit,
you know. I would say around eight to nine years old,
he'd go up and randomly start talking to another kid
at the playground and telling him all the million facts
about Pokemon that he knew.
And so we really had to.
Work on, you know, how to initiate conversation and listen
to the other person and responding and all of that.
And now he's doing really, really well. I'm just super happy.
He's super happy in you know, overcoming his challenges too.
Like he was a very selective eater.
All he ate was anything fried bread, chicken nuggets, like
tons of ketchup, and here he is eating more variety
than my husband and I.
He's like raw sushi everything.
So, you know, he still has his challenges, but he's
overcome quite a few of the challenges. And I attribute
that to the professionals that we worked with and also
us working very hard as parents with him individually.
Well, your hard work is creating a success story, and
that's what people need to hear. So as he grows older,
what do you see from him? Will he be able
to transition into the workforce? What's your vision and where
do you think that he can go?
Something I think about all the time.
I'm somebody that always thinks about the future, what's going
to happen?
How can I best prepare him?
And you know that is one of the reasons why
we started Autism Evocate parenting magazine is to get the
best advice so that we could implement it with our
own kids.
And so with.
Joseph, I already have him in coding classes, and you
know he loves martial arts. We put him in leadership
classes so that he learns how to be an instructor
because he thinks he wants to be an instructor. One day,
maybe he'll own his own dojo.
Who knows.
Just trying to look at all of his different interests
and nurture them as much as possible and think about
what the potential career path could be. And I think
probably the reason why I think about that is I
used to be an HR manager, a human resource manager
for ten years, so I've always been interested in jobs
and careers and.
Things like that. So of course that's on the forefront
of my mind. For him.
We also work on life skills every single week. He's
learning the zombie life skill, whether it's cleaning of some
sort or cooking or executive functioning skills, whatever it is.
That's great. So what's his school system look like? Did
he go into private school? Public school? How did you
approach that?
Yeah, so he did private school.
When he was first going to start kindergarten, I put
him in private school because I wanted him to be
in a class us with seven kids versus thirty, and
I worked really hard for that.
Even though I was jobless at the time.
My baby actually babysat other people's kids so I could
be able to afford to put him in at one point,
and he really thrived at that school. We did take
him out before the pandemic and decided to homeschool him
for a couple of years, which was great, and then
we put him back into school for about four months,
but we found that, sadly, he wasn't learning anything, and
the school almost gave him a pass for being autistic
and not expecting anything of him and letting him not
complete assignments or not work on the same work as
the other kids, even though he was in a class
with other neurotypical peers. And so I pulled him and
we homeschool again. And I have so I partially homeschool,
and then I have a private teacher that comes and
teaches him.
The education system unfortunately did not work for him as
you planned. Now that you've taken control of that, what
challenges are you giving him, how's he responding to that,
and what do you think his future is with his education?
And what is he like the private teacher that he's
working with right now, he's already doing algebra, for example,
high school level.
So we try to work at where his strengths are.
You know, he was really behind in language arts, so
we're trying to catch him up, but he's advanced in math,
so we take it further that way. And then we've
got all the other fun subjects that he loves, science,
history loves its history. And I do all the fun
subjects well, the teacher does the math and language arts.
Well, I don't blame you there. I think I would
do the same thing. So I have a lot of
people that tell me that their autistic son or daughter
focus on some things, and they are intent on what
they focus on. Is your son like that where he
gets very intense and focused on certain.
Things, absolutely, especially with history, and anything he learns with history,
he can just retell it to you really really well.
For a period of time, he was really into sharks,
so he knew a lot of facts about sharks. And
one hundred percent he knows everything about Pokemon, probably every
single card, what value they are, all those different things.
I don't know anything about Pokemon, but luckily I have
a husband that does think and support him in that interest.
Now, a lot use computers and like that. Does he
like computers as well?
Yeah, so he's pretty good with computers.
And we did have him in the coding classes, but
they were going a little bit too fast for him.
So interesting enough, my daughter, who's younger than him, she's
ten years old, she was doing the coding classes too,
and so now she spends one night a week and
she will reteach that class to my son and he'll
get it easy. And it's really really nice to see them.
His siblings support him.
It's always great to see siblings getting along. Now, you
told me that you co founded the magazine partially because
of him, So how has that worked out in what
your plans.
Were to me, It's really important to have knowledge about
all the different areas of autism and how I can
best support my son. I'm not trying to change him
with his autism, but I'm trying to help him overcome
his challenges so that he has the best success in life.
And so I wanted to find out what the top doctors, researchers,
and professionals in the field of autism had to share
from all over the world. And it's not like I
had the funds or the ability to go flying from
country to country and chat with these doctors or have
all of these appointments.
And so.
I got together, It's another individual and some other parents,
and we decided the best way to bring that information
to ourselves as parents was to start a magazine. There
wasn't another magazine that kind of fit our needs of
accessing the top caliber out there. Like And when I
say that, I mean, you know, who is the top
doctor or doctors in genetics, in the field of autism,
Who is the top doctors in all these different areas,
and what do they have to share with us as parents?
What can we learn from that?
Such a great idea. The more knowledge we can get.
The more you can put out there, the more people
can hopefully understand what's going on, and it's just a
win win for everyone. I think that's a great thing
that you started this magazine because it's helping so many people.
I read the magazine along with every other parent every month.
I'm not an expert.
I read it and I see what resonates, and I
go ahead and take that information and take action on it.
I don't implement everything I read in the magazine. I read,
but also I have the knowledge, and then I'll pick
and choose what I think would best support my son.
I think doctor Tom O'Brien said it best when he said,
if you just take one hour to one hour a
week to learn about a different area of autism, before
you know it, you'll be an expert in many areas
of autism. And I wanted to know what the research
and the top doctors had to say, and I stayed
true to it.
So how long has it been out there now?
And since October twenty twenty is when we started. It
was the first issue.
That's awesome. How has it grown over the years.
Yeah, it's great. We have an Instagram following of about
thirty thousand. It's growing every day. We get about six
hundred thousand views a month on our various posts and
reels on Instagram. We get a lot of website views
as well, so it's growing pretty well. We're really pleased
with it because it's nice to see that other parents
are wanting to access that information to I'd have to
say the make is really for the engaged parent that
really wants to take action on the information.
That's awesome. It must make you feel really good about
how it's going.
Yeah, it does make me feel good because it's nice
to help and serve other people. A lot of the
parents of the magazine just volunteer their time just to
access the information, and the subscriptions really go to pay
all the talent we couldn't sign for free, graphic designers, editors,
things like that.
What do you see happening with the magazine in the future.
I think it's great what you're doing. Do you have
anything you're planning on maybe expanding into.
Yeah, we're working on a project right now. We've got
three different subscription types monthly, an annual, and a premium subscription,
and we're actually starting on transitioning our premium subscription to
a full autism resource library. So we have an article
directory in there with over five hundred plus articles from
top experts, as well as printable resources, stories of hope, inspiration,
social stories, lots of different things. I'm all grouped by topic,
and I really like that because when you're struggling with something,
you just want to go to you know, what do
all the top experts have to say about self and
drisk behavior? As my kid is banging their head against
the wall, you know, I need to be able to
support them.
What we're going to have in the Autism Resource.
Library is a directory of the top experts within each
area so that people can access them and you know,
reach out to them for support based on the area
that they need.
And we're looking at.
A couple other cool things first sleep that we're going
to be putting in that librariy. We really want to
have a robust library so parents can go to it
and access things that at any given time with any
challenges that they're having with their kiddos.
I think one of the biggest things in at least
in my opinion, is the new parents that are facing
autism for the first time. They are just so overwhelmed,
don't know what to do, and this magazine I think
probably has addresses that in such a way that it
can help them and guide them. And I really think
that that's a great thing what you're doing to help people.
Yeah, that's very true.
We do have a category new to Autism and we
are going to have kind of guidance on new parents,
helping them to access you know, what are your child's challenges.
You know, these are the steps that you should be
taking or the people that you should likely reach out to.
But I hear you on that that's it's a game
changer when you have your first child on the spectrum
to know where to go and how to where to turn.
It's hard.
Yeah, sure is. I've talked with people here in the US,
I've talked with people in Canada, the UK, South Africa.
I've talked with people all over the world, and it's
a common thread. People just don't know what to do.
And this is a worldwide problem in you know, first
world countries and third world countries. It's a whole different
ballgame autism. It's very sad what they don't have access
to to support their kids. In back, we partner with
about for autism organizations in Africa where we just supply
the magazine for free to those organizations and families so
that they can take some of the information and start
acting on it as parents. And what's interesting is, you know,
they don't have access to anything, but they do have
access to a smartphone, so they can read the magazines digitally.
You know, it works out, but my heart goes out
to them because they're in a worse position than us
in Canada and the US, or UK, Australia and so forth.
Yes, unfortunately that's true. They need our help and our
guidance as much as possible. What are some of the
things that you tell people when they first approach you
on what they need to do.
So first step is they need to get an autism
diagnosis for their child so that they can see the
different areas that their child also struggles with which will
be within that diagnosis and can start leading to support
whether it's they you know, have challenges with speech and
needs therapy, or if they have feeding issues and need
feeding therapy, whatever it may be. And then what my
biggest suggestion is really just start learning about different areas
of autism. Just spend one hour a week, reading as
much as you can about a different area, and like
Tom O'Bryan said, before you know it'll be an expert
in many areas and you'll start to learn really quickly
what supports are available there, and you know what you
think your child needs.
You have great intuition as a parent as well.
I think you know you know your child best and
you know the areas that they struggle with and where
they need support. You just need to know what are
the types of professions, what are the types of therapies
and supports that are available to my child for these
different issues in which do I want to select as
a parent for them to have.
That's great information. I'm sure that this will help a
lot of people. I know when you're first diagnosing your
child is autistic, that's very tough and you don't know
what to expect, you don't know what to do. And
I've heard also from different people talk and that it
can cause stress on marriages. It's just overwhelming at times.
So I'm glad that people are like you or out
there to help.
After my son was diagnosed, we realize my husband was
autistic as well, so that's been a whole journey itself
in learning that, and it's really nice to see my
husband identified with my son, and my marriage makes a
whole bunch more sense now too, now that I know.
So how long ago was it that he was diagnosed autistic?
So my husband hasn't gotten diagnosed yet.
But it's interesting when my son was little and my
in laws would say, oh, it's okay, he's just like
his father when he was little, and you know, there's
alarm bells going off in my head. And there's a
lot of things that you know, especially with you know,
husband that's autistic and you're neurotypical, and you have no
idea you bet heads about, and so you know, he
has a lot of very specific hobbies, very intense hobbies,
and you know, can't ever read between the lines. He's
an engineer as well, so and you know, very methodical
and thinking, but doesn't socially read between the lines and
things like that. And so it's been interesting through the
process understanding. And I remember having that chat with my
husband the first time where you know, we kind of
sat down and said, hey, you know, Joseph's gone through
this diagnosis. There seems to be like a lot of
similarities and I remember it being really hard on him
having that conversation, but then coming to the realization that
it makes sense now. Back in his time, they didn't
diagnose autistic kids.
Yes, that's very prevalent. Back then. I talked with so
many people that got diagnosed later in life because they
just knew there was something wasn't quite right, but yet
there was no diagnosis. People just thought they were acting
up and it just wasn't so they were just coping
in their own way that they knew how to.
Yeah, it's sad, and we thought about getting him as
diagnosis only for one reason, and that is to have
it on paper, so that Joseph knows his father is autistic.
When you can't relate to mom or someone else, you know,
you can relate to dad. And it's clear as day
that my husband's autistic if I went through kind of.
The list of things.
However, my son did say to me, it was probably
a couple months ago in the car. He said, oh,
you wouldn't know what I'm going through. You know I'm autistic.
If you don't know anything about that, I say, hey,
dad knows dad. Dad's autistic himself, so you can talk
to him about you know these feelings that you're having,
and he said, well, Dad doesn't have an official autism diagnosis.
And remember going home that night and saying to my husband, Okay, like,
it's not that you need this diagnosis to go get
you know, any kind of supports or there's things like that,
but we should probably go through the process so that
it can be documented. Hey, you know I do have autism,
and you know, relate to our son.
So we'll do anything for our son.
And you know, we already know he's autistics, so why
not relate to him further so that he knows he
always has a parent that he can relate to.
And in the circumstances, I think that's just outstanding that
he'd be willing to do that because that is a
definite connection with his son, and later in life it
will be just such a huge thing that they can
share and kind of talk about if they need to.
So I just applaud him for that.
Yeah, and it just makes sense. You know, he was
a kid. He used to get in trouble the time
you have to write sentences almost like on a chalkboard.
But then he'd be in the gifted class for computers,
so you know, have the same kind of reactions that
our son had when he was little. So that was
very eye opening, I think for us and for our
marriage and for our son, and it really helped us
to see things in a different light.
Yeah, it's just great how small things like that can
change your whole perspective. Just a little thing that your
son said about not understanding and now the father getting
diagnosed to make that connection. I think that it's just
great for the family and it shows that you do
in the right thing for him. I just think that's
just awesome.
It's interesting through the magazine, one of the doctors just
wrote an article recently on therapy for neurodebarus couples, and
so I thought that was interesting.
Yeah, I mean it's just a matter of anything that
will help a couple or a family. It's not only interesting,
but very very good for everybody involved.
I think our maybe any of our issues that we
had early on in our marriage have been ironed out
now that I have a different perspective of where he's
coming from and how he's thinking and all of that.
But you know, it can't help to get further therapy
and support. So I thought that was really interesting to
read and thinking, Okay, well maybe that's a step that
I'll go to you next and help make our marriage
even stronger than it is now.
That's just fantastic. I've had the opportunity to speak with couples,
unfortunately some of them have had to go through divorce
and others found ways to work things out and it
did it made their marriage stronger. So kudos to you
for that.
The divorce rate is huge for couples that have an
autistic kid. I think it's I think it's something around
eighty percent. I can't remember.
Well, that's huge numbers.
It's very unfortunate.
And I will say when my son was diagnosed, so
my husband he didn't want to believe it. And here
he is autistic, but he didn't want to believe that
our son was autistic. And it was a really hard time.
It almost separated us for a bit, not separated us
in marriage, but you know our views on it. You know,
I was in pain and hurting and all by myself,
and he was like ignoring anything that was going on
on the other side. Now he's an amazing husband, totally
come around. We really realized that, you know, in that challenge,
it's sort of divided us. But since then, all of
our challenges as a couple have brought us together through
that learning process of how we handled, you know, our
first big challenge as a married couple, our first child
being autistic.
I'm so glad that you made it through that challenge,
just because, as you're saying, so many people don't. Well
that said, this has been great, great conversation, great topics.
We've covered so many things, and there's so many things
we didn't even touch upon that you could have talked
about because of your magazine. So once again, thanks for
coming on. I really appreciate it.
Thanks, thanks so much for having me.
And yeah, I'm excited to listen to your podcast episodes
and start subscribing.
Yes, thank you, I appreciate it, and don't forget make
sure that you go to Autism Advocate Parenting magazine and
keep up with all that they're doing. Thanks for taking
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