Grandparenting on the Spectrum: Jennifer Kaufman on Autism, Family, Acceptance, and First Responder Training

What if everything you thought you knew about autism and
mental health wasn't the full story. Today's conversation might change
the way you see it. Welcome to Why Not May,
embracing autism and mental health worldwide, where real conversations and
lived experiences inspire understanding and hope. I'm Tony Mantor this
is where understanding begins. If this kind of conversation matters
to you, then follow the show so you don't miss
what comes next. Joining us today is Jennifer Kaufman. When
we talk about autism, we often focus on individuals or parents,
but there's another perspective that can shape understanding in a
very powerful way. That's grandparents. Jennifer is an author and
advocate who is helping redefine that conversation through her book,
Grandparenting on the Spectrum. Her work challenges generational assumptions and
opens the door to greater awareness and acceptance. Through her work,
she offers insight, compassion, and a bridge to a deeper connection.
Thanks for joining us today.
My pleasure.
Thank you so much.
Oh it's my pleasure. Let's start this off with telling
everybody what you do. Hi.
My name is Jennifer Kaufman.
I am not only a school principal at a school
for kids with autism, but I am also the grandmother
of an eight year old who is on the spectrum,
my grandson Ben. I am also a speaker, a trainer,
an advocate all things autism, work with grandparenting groups, you know,
talking to them about my book and all that I
write about there. But I also train first responders and
police departments and college campus security teams, and I help
them better understand what it means to work with somebody
who is neurodiverse.
So tell us the name of your book. The name
of my.
Book is Grandparenting on the Spectrum, A Journey from both
sides of the Desks.
Wow, I like that great title. Thank you.
How long did it take you to write the book,
and if you would give us a little information about it.
I started writing it about two years before publication, and
it is about my learning curve, my own personal learning curve, okay,
because I was this person working with students and their
families and autism, and once my grandson was diagnosed, I
started bringing all of that experience and knowledge to my
daughter and her husband, and I quickly realized that sometimes
new parents don't want.
An expert telling them what to do when that expert
is your mom.
Sure, that's very understandable.
Which affected you more being the grandparent of an autistic
child or working with autistic children in the school system.
That's a great question. I would say that on a
deeply personal level. Of course, having a child with autism
in the family and understand and how that changes the
dynamic of a family really deeply affected me. Though my
years as a school administrator and working with kids who
have autism, that's my heart's work. I never quite understood
the commitment that the families were involved with, because, you know,
I go home at the end of the day.
It's interesting. I've had teachers that have been on here
that later became autistic parents. They thought they were going
to be great mothers because they worked with children in
the school system that were autistic. Then when real life
situations happened and it was after school, that's when the
reality set in that this was going to be their
daily life from now on. So how did that affect you.
You've worked with autistic children in the school system and
now you have an autistic grandson. How did that dynamic
play out for you?
Well, you know, what it was.
It was interesting because initially, like when I found out
my daughter was pregnant, these expectations of what that was
going to look like in terms of my role as
a grandmother.
Sure, that makes sense.
And then once that autism diagnosis happened, and having the
knowledge that I do from being in the field, I
really understood that I had to shift my expectations. Sure,
some of the myths that many grandparents go into this,
myths about pauses of autism or hey, if you only
had a little bit more discipline in his life, he
didn't have to deal with that because my professional life
gave me that knowledge as to what's real what's not,
and shifting my expectations to better address the needs of
not only my grandson, but more importantly and unexpectedly the
needs of my daughter and her husband.
Where you know and understand autism because you work within
the autistic community, how did that relationship work with your daughter?
Well, it's interesting because as every parent, I'm like, I
raised my kids, raise my own kids, so I'm the
expert in child rearing in the family because I raised
you adulthood. And then having the professional knowledge, like I
considered myself to be sort of the expert on all
of this, right, Really quickly I learned that new parents
and parents with a new diagnosis particularly, they're the experts, right,
They're the experts. They're the ones with the knowledge, they're
the ones living it. Yes, and their opinions and their
thoughts are so incredibly important, and they're say so is
sort of the final word. And accepting that was a
big part of that shift.
Did you have an emotional part of it that you
went through that you really wasn't comfortably saying out loud
at the time.
Well, I think like all grandparents and all parents, really,
you worry. You worry about the future.
You worry about the future, and being not a parent
but a grandparent, right, worry about the future after I'm gone.
Yeah, yeah, it all works.
Out well, grandparents, grandchildren and children will outlive their parents, right,
And you know, I worry about his future, my daughter's future,
and that the resources are available to support everybody and
making sure that support system is in place.
There's a lot of misconception out there about autism. Many
have this perception of what they think autism is, when
in reality, it's not even close to what they thought
it was. What would you tell grandparents that have this
perception of what they think autism is, and then when
they find out their perception was totally wrong, what would
you give them for advice?
I tell them a couple of things.
The first thing is, when you've met one person with autism,
you've met one person with autism. The second thing is
things will change day to day, week to week, hour
to hour. And you know things when I see my
grands so he might love certain things and he might
be doing certain things, and then I meet him again
and it might be a completely different situation. And that's okay.
Grandparents don't have to show up and be perfect. They
just have to show up.
Yeah, right, in your experience, what helps people move beyond
what they feel is normal. So this way they can
open themselves up to something that is completely different and
embracing a different reality.
Well, you know, there's a shift that I tell grandparents
and I tell first responders, and it's keeping in mind
that when a child or an individual is struggling, it's
not that they are giving anyone a hard time. It's
that they are having a hard time and bringing that
with you when you go to be with someone who
has autism or is neurodiverse. It really changes that conversation.
It changes the way you look at the person who
might be going through a difficult time. It changes the
way you might want to support the family. It turns
it from a defensive posture to.
One of support.
What of the most striking differences you've seen between how
older generations and today's generation understand autism and how does
it affect their acceptance?
Well, like I said, sometimes I hear comments like Gail,
she was only a little firmer with him, or if
he only you know, sent him to his room, or
and it's not the case at all, and understanding that
you know, it wasn't because the child had a vaccine,
It wasn't because somebody did something or ate something like
this is a genetic, neurological condition. There's sometimes other comorbidities involved.
And keeping that open mind, like approach everything with curiosity
for judgment.
Right. I love that saying because it really just sums
it up.
Now, you mentioned that you work with first responders as well. Yes,
I think what you're doing is great. I've had people
on here that have been former police and now they
have formed companies that go out and train police officers
how to interact with autistic individuals in high pressure situations.
What are the key mindset shifts you teach first responders
to help them recognize that autistic behaviors may look different
but aren't necessarily signs of aggression or danger.
Absolutely, it's funny because that grandparent first responder. Some people
are like, how did you connect those two? They're both
groups that have so much experience and so much you know,
in this case of police officers training, but they come
to this without the complete picture. Yeah, And in my trainings,
I try to give them the complete picture, and we
talk about, you know, someone under the influence might look
this way, but somebody who is neurodiverse might have similarities.
But the differences and these are how you can tell
the difference.
Yes, exactly. I had a father tell me about his
autistic son. He was walking down the street. He was
just a happy guy. He was walking down the street,
listen to music, just flapping in his arms. Unfortunately, they
thought he was high, so they took him down to
the local precinct. As luck would have it, they called
the dad. He went down to the precinct, explained to
them that he was autistic and everything turned out just fine.
How do you tell these first responders, because it's really
they've got only seconds sometimes to make a decision on
what to do. They've got to make a decision on
how to handle this person that's in front of them
that maybe having a meltdown, and then in ten or
fifteen minutes it'll be fine. But they've got to define
that and figure it out and know how to defuse that.
So how do you help them learn how to first
spot it, then when they spot it, diffuse it. Well.
We talk a lot about communication issues, We talk about
eye contact, about the fact that this person might not
be aggressing towards you in the same way that somebody
who is under the influence or somebody who now intent
would be. I respect police officers and the fact that
they have to make these split second decisions. And I'm
not saying that my training is a cure all, but
I certainly think that going into a crisis situation with
some basic knowledge about what they should be looking for
can be very helpful. I think that understanding that you know,
police lights, sound sirens, these are the sensory issues that
can really exacerbate a situation. I tell them about the
Blue envelope program. Are you familiar with it?
Yes, I've heard of that. Can you explain it to
our listeners?
Sure?
The blue envelope program is a blue envelope many towns
will provide to you. I know in my area here
in New Jersey were very involved with the Blue Envelope program.
And a person on the spectrum who might be driving
a car, we'll keep their insurance papers they're licensed in
this blue envelope. And on one side of the envelope it says,
if you were pulled over by a police officer, this
is what you do, and give some instructions to the person.
But then they take the envelope out of their glove box,
give it to the police officer, and there may be
information about that person, and it indicates that the person
has autism, so that the police officer knows, okay, this
person has autism and needs a different type of support
than I would provide somebody who you know, I was
pulling over for speeding, who was aggressing towards me.
How long is a typical class for your first responders?
Actually, they're pretty customized trainings. I do them online and
in person.
Oh okay, yeah, yeah, what about in person?
In person, they start at ninety minutes. Okay, do half
day trainings, full day workshops, and they're really structured around
the needs of the community.
Yeah. I had a former police officer. He was training
first responders on how to interact with the autistic community.
The captain tried to get him to do it at
roll call and he said, no, I won't do anything
less than four hours because they have to really learn
the differences, and that's something you can't do in a
short period of times.
Yeah, and so those type of trainings might involve some
physical de escalation techniques, I involve like a more comprehensive
type of program.
Sure, but I think.
That if you're not providing police officers with that level,
providing them with some solid basic knowledge of easy to
remember strategies and concepts that they can just take right
into the field is important.
It's crucial.
In the classroom, you'll learn certain things from different autistic
kids and how they handle different situations. What have you
learned from your grandson, Because everybody can learned something from somebody,
So what'spend your learning curve with him?
What I have learned astounds me each time, is that
living in the moment and not worrying about what tomorrow
will bring or what happened to you yesterday, and just
living in the moment and doing what makes you happy
and finding joy and what makes you happy is something
that I've learned.
Yeah, and now how old is he now? He is
eight eight? What age was he diagnosed?
He was diagnosed around.
Four four Okay, is he verbals?
It's astounding because at four five six his verbal capabilities
were so, so, very limited, But just recently he has
become much more verbal. He's advocating for himself. You know,
if he's thirsty, he might ask you for a drink,
and he has his talker to support his communication.
Right, right, Is that through an iPad? Yes?
Yeah, I've heard a lot of those, and I've heard
they work really well.
Yeah.
You know, not everybody will understand him all the time.
We underst stand because we were with them all the time.
But if he is out in the community, or even
if our my students are out in the community, they
will have a device so that if they're ordering a
burger at a burger place and the person behind the
counter does not understand what they're saying, they can take
out their Tucker, and they can choose a button to communicate.
Okay, since we're talking about communication, have you learned ways
of communicating with your grandson versus the kids that you
would have in your classroom.
How does that differ for you.
That's a really good question, and I think it goes
back to that original comment of like one person with autism,
they're all so so very different. I think that having
my grandson in my life as he is makes me
more relaxed around.
My students at school.
Good good, Yeah.
Yeah, I would say that it makes me more comfortable
going in and interacting with them and operating just from
a slightly shifted perspective.
Yeah. Now, you do a lot of advocacy work. What
does that entail?
It entails just what I'm doing now, talking about these issues,
bringing it into the community. I do keynote speaking, public speaking,
I have a website Jennifer Kaufman Speaks, Okay, and I
try to get the word out as much as possible.
I feel like I'm doing this for my students and
I'm doing this for Ben.
Now.
I've been doing this podcast for three years now, and
it's amazing the stories that I hear and what people
tell me, after hearing so many different voices and experiences,
what perspectives have stood out to.
You the most.
What makes them so impactful for you?
You know, I want to give a shout out to
one of the other grandparents, my daughter's husband's mother. She
does an exceptional job of educating the other family members,
particularly all of the cousins, and making sure that the
children in the family, no matter what their age, understand
that Ben communicates differently, you know, processes information differently. It's
just so cool to watch and it's so cool to
watch and be supported by his cousins who he will
grow up with.
When you compare what you see at school with what
you experience with your grandson, what are some of the
misconceptions that really stand out to you and what do
you encounter most often that you wish people would take
more time to learn more about.
We hear all sorts of things like, because parents are
grasping for straws, they're looking for solutions to their problem,
you know, not that it's a problem, but they're looking
for a solution to help fix their child. Really, autism
is a different operating system. It is just as I
wouldn't fix my apple computer to make it more like
a PC. Accepting it and learning about it and working
with in the way that it's meant to be worked
with is such a better strategy than looking for the fixes. Now,
that's not to say that there are some research based
supports that are out there, research based versus you know,
somebody said this substance is going to help you just
because the intern does. So looking at the research, talking
to your doctors, your therapists, and creating well formed opinions
before implementing any kind of strategy or support.
Is just crucial.
How do you feel that your book relates to people
versus other books that are just about autism, especially where
you're really pushing it towards the grandparents side.
Yeah, So when I became a grandparent, of course I
went to go read the research and to go read
whatever literature I could find, and there really wasn't that
much coming from the perspective of the professional as well
as the grandparent. That is what motivated me to write
this book. I hope that it would be a resource,
not in a clinical way for grandparents, then more of
a sitting down at the coffee table, chatting over a
cup of tea and talking about my experiences giving some suggestions.
You know, what do we do at holidays? What do
we do when the child visits us? What if we
live a thousand miles away from each other? There are
just some of the topics that I cover.
You've got a broader pattern.
Now, this's happening because more and more people are finding
that autism is growing.
I don't believe it's growing.
I think it's just we're becoming more aware of it
and we're becoming more clinical. So there's a reason why
we went from one in one hundred to one and
thirty one is because we've gained knowledge. And when you
gain knowledge, you are able to see more things and
understand them. So what do you feel that connects the
grandparents in ways that other grandparents might not connect because
they starting to get that liding experience of what autism is.
I think that it's funny when I when I do,
I might go to a library and speak to a
group of grandparents and I find that there are a
lot of tears. And it's not tears of sadness as
much as they are tears of being heard. Hey, great,
we're grandparents. We're all you know grandparents Because our kids
had kids, But when it's our kids had kids with autism,
you just sort of feel isolated and alone fresh And
then I get from talking to people after my workshops,
after my talks, is that they don't feel alone anymore.
One of the most common things I hear is when
a young set of parents have a child, they find
out the child is autistic. They are so afraid because
it's the big unknown. They don't know what it is.
They probably don't have any communication with other autistic parents,
and now they're thrust full force into the autistic community.
How have you found the grandparents where they're in a
very similar situation, Like you said, they feel like they're alone.
Have you found that the grandparents feeling that way?
Have they mirrored what.
Their kids feel or do you feel a different approach
from them.
I think it's a little of each.
I think that some of them will pick up those
signals and listen to what their kids are saying and
accept it and go with it. But then there are
others who might think that they know better or might
think that well, I you know, I read this, or
my friend told me that, and sometimes the information is
not helpful and not accepting the parents, as the authority
in the situation, can really put up some walls in
terms of communication parents of kids who have autism. They're
hearing advice not only from their doctors and from the
therapists that the kids have, but also from the grocery
store cashier and from the online communities. And they're just
hearing it advice from everybody. And now here's a grandparent,
here's my mom, or here's my dad, And now they're
giving me unsolicited advice. And I remember I said unsolicited
because it's okay to have conversations and provide your thoughts.
What unsolicited advice and you should and you need to
really just build walls.
And I talk a lot about that in my book.
Now, you've been a teacher, you've worked with autistic kids,
so you're a little bit different. But I still feel
this is a good relative question for you. How is
this journey with your grandson now that he's been diagnosed autistic.
How has it changed the way that you might have
perceived autism? And then how has it changed the way
that you see people?
Oh?
Interesting, So in terms of how I see autism, I
think it goes back to that twenty four to seven
type of thing. You know, you hear it's a rough road.
And you know, if I have him in my house
for three days, I'm literally exhausted in the end of
the time because you just don't know what's coming at you.
In terms of people, I think it's solidified my belief
that there are really good people. There are also people
with very closed minds who have a tendency to not
be so nice, and we've come across that. I'll tell
you I was never more proud of my daughter when
I saw a man say something to the table when
we were out to lunch because my grandson was loud.
He was having some vocalizations, and he came over and
he said something like that kid needs to be hit
or it's something terrible, and he walked away. And at
the end of the meal, I watched my daughter so
gracefully get up and walk over to his table where
he was eating with his wife and say to him,
we've worked very hard to get ben into a restaurant
and now we're here and we're enjoying our lunch, and
you said such a terrible thing. You know think I
think the parting shot was you have the day you
deserve goodbye. But you know, I speak because I hope
that somebody will hear the message and that they'll shift
their perspective and the way they see situations when a
child might be having a behavior or might be having
a vocalization.
Yeah.
Yeah, So what matters most now.
What matters most now is inclusion. Okay, what matters most
now is creating schools, environments, playgrounds, people that will include
people who are different.
Yeah. I love that. Okay. One last question.
When your grandchild looks back one day, how do you
hope they remember you?
I hope. Well that gets me choked up.
I hope they remember me as someone who accepted them
for who they were and how much we laughed together.
Good, good, Well, this has been great. I really appreciate
you taking the time to come on.
Thank you, Thank you so much. I appreciate it.
Oh yeah, one more thing, give us your contact information
one more time.
Sure.
Jennifer Kaufman Speaks is where you can learn more about
my speaking engagements. Maybe I'll be in your area. Grandparenting
on the Spectrum dot com is my grandparenting website and
First Response Autism dot Com is my first responder please website.
Well again, thanks I really appreciate you taking the time.
Yep. Absolutely, it was a pleasure speaking with you.
Yes, my pleasure as well. Thanks again, hey, sincere. Thank
you to our guests for sharing their journey with us today.
We appreciate their honesty, courage, and willingness to open their
heart in hopes of helping others. If today's conversation helped
you see the world a little differently, then we've accomplished
exactly what we set out to do. Until next time,
keep believing, keep learning, and most importantly, keep asking yourself,
why not me?