What Every Grandparent, Caregiver, and First Responder Should Know About Autism

Supporting Neurodivergent Families with Jennifer Kaufman

In this episode of Advice From Your Advocates, Elder Law Attorney Bob Mannor sits down with Jennifer Kaufman, autism advocate, educator, school principal, founder of First Response Autism, and author of Grandparenting on the Spectrum: A Journey from Both Sides of the Desk.

Drawing from both her professional experience in special education and her personal journey as the grandmother of a child with autism, Jennifer shares valuable insights into the challenges and opportunities families face when navigating an autism diagnosis. She discusses how grandparents can provide meaningful support, strengthen family relationships, and better understand the communication needs of autistic children and adults.

Bob and Jennifer also explore critical topics affecting individuals with autism and other neurodivergent conditions, including:

• Autism awareness and advocacy
• Grandparent support after an autism diagnosis
• Communication strategies for autistic individuals
• Special needs planning and guardianship alternatives
• Transitioning from school services to adulthood
• Independent living, employment, and community inclusion
• Autism and higher education support services
• Neurodiversity in the workplace
• Training first responders, police officers, and campus security personnel to better support autistic individuals during emergencies

Jennifer also discusses her work through First Response Autism, an organization dedicated to helping law enforcement, first responders, and security professionals recognize, communicate with, and safely assist individuals with autism and other neurodivergent conditions. Learn why autism-informed crisis response and de-escalation training can make a life-changing difference for families and communities.

Whether you're a parent, grandparent, caregiver, educator, first responder, attorney, or advocate, this conversation offers practical guidance and compassionate insight into creating more supportive environments for individuals on the autism spectrum.

About Our Guest:
Jennifer Kaufman is a special education leader, autism advocate, founder of First Response Autism, and author of Grandparenting on the Spectrum: A Journey from Both Sides of the Desk. She works with families, schools, first responders, colleges, and organizations to promote autism awareness, inclusion, and effective support strategies.

About Advice From Your Advocates:
Hosted by Michigan Elder Law Attorney Bob Mannor, Advice From Your Advocates provides trusted guidance on elder law, special needs planning, estate planning, caregiving, dementia, disability advocacy, and the legal and practical challenges families face throughout life's transitions.

Executive Producer: Savannah Meksto

Assistant Producers: Samantha Noah, Shaene Gaul

Transcript

Welcome And Guest Introduction

SPEAKER_01 0:00

You're listening to Advice from Your Advocates, a show where we provide elder law advice to professionals who work with the elderly and their families.

SPEAKER_00 0:09

Welcome back to Advice from Your Advocates. I'm Bob Manner. I'm a board certified elder law attorney, and I'm very excited about our guest today. We've got Jennifer Kaufman, and she's the author and the founder of First Response Autism. So Jennifer, can you give us a little introduction about yourself?

SPEAKER_01 0:27

Certainly. I am located here in northern New Jersey. I am a school principal at a school for learners with autism, and I am also the grandmother of an eight-year-old grandson who also has autism.

SPEAKER_00 0:40

Wow, that's fascinating that uh you have both uh perspectives. So, how long have you been a principal for then?

SPEAKER_01 0:46

Overall, I've been a principal for about 20 years, but at this particular school I've been there for six years.

SPEAKER_00 0:51

Okay. And so were you in a more traditional school prior to that?

SPEAKER_01 0:56

You know, I've always been in special education, and my schools have always had an autism component. There might have been a few classrooms. This is the first time I am at a school that is just strictly an autism population.

SPEAKER_00 1:08

Okay, very interesting. So I, you know, I've told you I really want to talk about your first response autism, which is training for police and first responders and campus security teams on ways to best support autism and neurodivergent individuals in their communities.

Grandparenting On The Spectrum Book

SPEAKER_00 1:25

I'm really excited about hearing about that, but I'd like to start off with your book. So again, a great name for a book, Grandparenting on the Spectrum, A Journey from Both Sides of the Desk. Tell us about your book, what kind of motivated you to write the book, and what what you hope people get out of the book?

SPEAKER_01 1:40

Certainly. Well, you know, as a professional in the field, I had a tremendous amount of experience and knowledge and access to information that like the typical person would not have. And when my grandson was diagnosed, I immediately thought, aha, I can bring all of this information to my daughter. And it caused some problems because my daughter wasn't looking for the school principal with the knowledge. She was looking for mom and grandma to be there in other capacities. And that really got me thinking that I am probably not the only person. Maybe other people don't have that education background, but grandparents have a lot of parenting experience that they bring to the table. And this is a very different situation and different dynamic. And that's what motivated me to write my book.

SPEAKER_00 2:29

Well, that's fascinating. And I I can definitely see that from the standpoint of you have a certain level of expertise, but you're also a family member, and it gets, you know, difference in partly the way it's perceived, but also just your the personalness of it. You know, it's one thing I find it that when I'm giving advice to folks about a parent with uh dementia or something like that, that it's much more difficult when it affects my own family than if I'm uh speaking to a family that I don't, you know, have that personal connection with. Is that something similar to what you're suggesting?

SPEAKER_01 3:05

That is exactly what I'm suggesting. I'm sure it is very similar from your your side of the desk as well.

Why First Response Autism Exists

SPEAKER_00 3:12

So tell us about, uh if you don't mind, I'd like to get right into the first response to autism. How'd that come about? What what is it? What do you do? How do you do the trainings? And tell us more about the organization.

SPEAKER_01 3:25

Sure. You know, it came about, uh I kept hearing and reading news stories about uh situations where autistic individuals were not treated appropriately for a variety of reasons. Um but then interestingly, I have a little house, we call it in here in New Jersey down the shore, and I have a deck that overlooks a main road. And I would see police officers trying to interact with individuals, often children, who were unable to speak, but it was obvious they were lost because you know they were in bathing suits with no shoes on, running down the street, and and watching police officers struggle to communicate, struggle to determine who this child was, where were where were his people, and just thinking about how with a little bit of training and knowledge in terms of de-escalating a situation when somebody is unable to speak to them, when somebody is not being difficult, it's not that they're giving someone a hard time or giving a police officer a hard time, they are having a hard time, and that shift in perspective really was something that I brought to my training sessions. I'm not, you know, talking from a highly clinical perspective. I'm not talking from a hands-on, this is how you de-escalate situation perspective, but I am just speaking from someone with knowledge of you give somebody a little time and you understand what their needs are and you're better able to support them, you can really circumvent a crisis situation.

SPEAKER_00 5:03

This can be, I imagine, particularly difficult with autism in that there might be a non-communicative person with autism or at least have some communication challenges. So that probably even when there is an attempt to de-escalate, that can be very challenging if the person isn't able to communicate in the way that we expect.

SPEAKER_01 5:24

Right. You're you're seeing somebody in a time of crisis, and on a typical person in a time of crisis isn't always able to communicate effectively. But now you're taking somebody who has communication challenges to begin with, and you're asking them to state their name and their address, and what are you doing here? And have you been drinking today? And you know, all of the questions that are routine questions and where answers are expected, but now you have somebody that is unable to answer, and it's not that they're doing it intentionally, it's that they can't communicate effectively.

Services Cliff And Adult Transitions

SPEAKER_00 5:57

I I noticed that, you know, you have a conversation about changes as, you know, whether we're often thinking about autism in children and in youth, and that I'd like to hear your perspective on changes as as we grow up with autism or you know, adolescence and then into adulthood.

SPEAKER_01 6:14

Well, uh, the whole transition from a system where a child or a young adult is supported through their school system. They hit the age of 21 here in New Jersey, and there's a sudden drop-off in services and in um educational support. And that is something that profoundly affects not only the individual, but their entire family, grandparents included.

SPEAKER_00 6:38

Right. Yeah. Fortunately, Michigan, we have until age 26, but I noticed my wife is an occupational therapist that worked with children, and that when I talk to her about the services that are offered, often once we get into sort of the teenage years, they they kind of scale back on some of the services, which I found very interesting because, you know, obviously early services can be really helpful in developing skill sets, but it's uh more intense in the younger kids, the the options that are available, at least through the Michigan public school system.

SPEAKER_01 7:12

Yeah, they call it the services cliff. It's like at a particular age, they literally fall off a cliff and are unable to continue what worked for them in the past. It's really unfortunate. Everyone is sort of underprepared for that drop off. Right? And now you've got employment issues, housing issues, relationship issues, guardianship, all of this. And in the meantime, you want your your child, your young adult to be a working active part of the community and have those opportunities that are appropriate for them. So where do you even begin? That is it's it's a challenge.

SPEAKER_00 7:52

From a legal perspective, that's one of the things that we definitely have conversations about. And when a child turns 18, they're considered an adult, regardless of whether they've have autism or other learning-related issues or spectrum-related issues. And so sometimes well-intentioned folks will say, Oh, well, you better get guardianship for this 18-year-old now. And our answer is typically, well, maybe, if that's necessary. But often, you know, self-determination, we just the problem with guardianship is you're really taking away the person's right to make their own decisions, legal rights to make their own decisions. And so if we can do something short of that, if we can have, you know, supportive decision making and and things like that, as opposed to full guardianship and and maybe powers of attorney and things like that, so that the parents can still have access or other loved ones can still have help with decision making and finances and such. But you know, sometimes it's necessary that guardianship is the appropriate answer. But we always look at it as it's definitely not the first choice that we look we explore other options first.

SPEAKER_01 8:59

It sort of goes right along with that least restrictive environment when you're determining an educational placement. Well, in terms of guardianship, the least restrictive as it can be is more advantageous to the individual.

School Placement And Community Success

SPEAKER_00 9:11

So tell me more about your school work because I know you know that certainly obviously is a push that we have, and you're gonna have to use the m tell me the right terminology to use, but where we we don't have separate classrooms and things like that for everybody. But then there are schools like the school that you're at right now where that's I'm guessing maybe that is uh sort of the more intense needs are the students that go to the school that you're the principal of. And so how is that decision made as to whether to have what you said sort of the least restrictive environment versus having the uh the the specialties of the school that you're at?

SPEAKER_01 9:52

Sure. And and that is a really good question, and it's uh really an answer that involves a team of people, and that team could include the teachers, administrators, of course, the parents, therapists, anybody who's worked and knows the history of the child can then plan and decide where the most appropriate placement would be. At my particular school, it's a one-to-one school, so every student has somebody there supporting them. And we do use ABA. We also look at the child very holistically. And our goal isn't for them to succeed within the walls of our school. The goal is for them to succeed out into the community. And a large part of what we do is we take them out into the community for um community-based instruction and also for work-based learning.

SPEAKER_00 10:39

That's great. Well, I'd love to circle back on the issue with regard to the first responders.

Training First Responders And Campuses

SPEAKER_00 10:45

Tell me more about the organization. Is this just something that you do locally in New Jersey? Is it something that you have others that uh provide trainings? What does that look like?

SPEAKER_01 10:55

So, this is something that I do locally here in New Jersey, but I also do it on a wider scale via Zoom. I could travel to areas if need be, but I find that doing it through Zoom gives people the opportunity, same opportunities as when we're in person. I also I started out training police departments, and that has evolved to a broader first response space. And I'm also now going onto college campuses and working with security teams in order to support their own efforts to support their students because there are students who are neurodivergent and who have autism who attend college and live on campus or visit the campus. And so we talk a lot about different situations that they find themselves in as to how to best support those students.

SPEAKER_00 11:42

Yeah, that's that's really great. I'm glad to hear about the inclusion of the college campuses and such. And the, you know, the there's probably a different level of uh uh of training experience that the the security on college campuses has versus the you know the fire department versus the first responders in the police department. And it must be a little bit challenging because that is a broad perspective and and the first responders come with different different backgrounds and and different, you know, experiences. And so that must be challenging to make sure that you're conveying and and helping them learn techniques for decentralizing and de you know creating a better communication system.

SPEAKER_01 12:29

Yes, it it can be. And I found that really meeting with the organization beforehand and planning out w you know what are their needs and how can I best provide the information to support them. Because often there is some kind of de-escalation training that might mention neurodiverse individuals, there might be some kind of online trainings that they're getting, but having somebody in the room where they can ask very specific questions about, you know, I had somebody once ask me about what if a student is having a really difficult time and a big behavior on a school bus. Do we take out the kids or do we leave the child on the bus? Um, and having having conversations that are very specific to the needs of the community. I mentioned that I have a beach house, and that in that community, I spoke to the police a lot about what to do on the boardwalk when you have a crowd around you, and what to do on the ocean, you know. Interestingly, 93 and I always like to mention this 93% of deaths, accidental deaths among people with autism involve water. Interesting. Yeah, it's a very high rate. I always say it may as well be 100% because that is such a high number. And that's a statistic from two years ago, but I'm sure it is the same. And just knowing that will change the way someone will or an organization will approach a missing person when you know that they have autism.

SPEAKER_00 13:52

Yeah, that's very interesting. I would have never guessed that. That is brand new information for me, and it wouldn't have even occurred to me that that would be the case. So that's particularly interesting in in beach communities and such, but really, you know, any every community has pools and and you know, things like that. So you know, it's interesting on the college campuses. I have one daughter that goes to a large, you know, international university, the University of Michigan, and then I have one that my son goes to a small tech tech college in Michigan Tech, and definitely a difference in the way that they approach this and and just seeing how how they can be much more supportive of the students and their needs with regard to adjusting to the community, you know, from 18 years old but on beyond that. And the technical, the small technical university seemed to go above and beyond, you know, the the large international university that has all the resources and and for obvious reasons, but I I I was really pleased when I learned about some of the strategies they use to help children, children, adults I guess, over 18 adjust to all of the changes of joining a campus community like that.

FERPA Privacy And Young Adult Planning

SPEAKER_01 15:06

That's good to hear. And, you know, even that the concept that over the age of 21 or or maybe it's 18, parents aren't really entitled to the information about their kids, their kids' grades, or you know, what's happening with them on campus. And so talking to colleges about coming up with a system so that maybe the student provides the name of a trusted friend when they're in crisis versus a parent, because a school can't just call a parent and say, like, hey, this is going on with your child, your adult, your young adult. So having those conversations and having colleges look at through a different lens how to best support their population can be very helpful.

SPEAKER_00 15:48

Yeah, they at Michigan Tech we just did the orientation, and they everything has to be done through the student, meaning that our our access as parents was limited to what the student clicks the box to give us access to. And they're an adult, unless you know now there is the I've got Savannah, our producer here on the background, and you have to remind me the name of the form. FERPA FERPA form, yeah. FERPA. So all of the universities have this for access, but and so we uh one of the things that we've kind of gone viral on is conversations with kids going off to school and why they should maybe consider giving someone financial power of attorney, medical advocacy, because they are an adult now and if they still want their parents' involvement, yes, it's nice to have that form through the school, but some of the interactions might be outside of the university campus. So we always talk about if they were in the hospital, are the parents gonna have access to the information if they got arrested? Are the parents gonna be able to assist with that? And so we got a mostly very positive response to our instructions that people over 18, anybody over 18, should have some basic legal documents in place, appointing those people they love and trust to be able to assist. And there were some feedback from some probably younger people that said, well, I'd never give my parents that authority. And that's the point. If they're a if they're an adult, they can choose not to, too. You know, and so but most of us just don't think about it when we're that young that that might come to be where we would need the help of you know somebody more experienced. And this is even more true, obviously, in a situation where the autism or other spectrum issues where there might be some additional difficulty in learning the transition time. So that's great to hear about the advocacy that you do with first

Resources Tips And Closing

SPEAKER_00 17:44

responders. And so if we have any first responder you know organizations that are interested, what's the best way? What is the best way for those organizations to begin a conversation with you about doing some training?

SPEAKER_01 17:57

They can reach out to me through my website at firstresponseautism.com.

SPEAKER_00 18:01

That's great. And then you have an online community too, both on Instagram and and Facebook. And so I'm wondering if that's a lot of other grandparents that are are seeking advice, or maybe just the parents of them and the best ways to create those interactions and sometimes create those boundaries, I would imagine. So tell us a little bit more about that community and and more about the book and how it helps folks adjust to all the things that they might bring to the advantages of the families, but also making sure that we're doing so in the right way that isn't an interference or over overstepping boundaries.

SPEAKER_01 18:37

Sure. On Facebook, our community is facebook.com slash grandparenting on the spectrum, and on Instagram, it's slash grandparenting on the spectrum. So it's pretty easy to remember. All of my resources can be found at jenkaufman.com and you'd be able to see where you know all I sort of bring all the websites together. And so if you just remember my name, Jen Kaufman, with one N at the dot com at the end, well, you can go right there and see everything in one place. I'm also providing, interestingly, this has evolved into a corporate training because now I'm having companies reaching out looking for some support for their HR people and supporting neurodiverse employees and clients. And and that's been an interesting shift to add to these other two groups that I'm helping out.

SPEAKER_00 19:28

Well, what do you hope that your audience gains, especially from your book? So who who it might be someone that should pick up your book? And what do you hope that they they learn from that and gain from the the work that you've done?

SPEAKER_01 19:41

You know, I really want people who read my book in particular to understand that they're not alone and that there are simple strategies that they can put in place that will improve relationships, not only with their grandchild, but with their adult children as well. That was my primary focus. And I do believe overall that communication and implementing strategies, like giving somebody more processing time when you ask them a question. It's really not all that complicated. And and really listening when a parent of a child with autism says that they need something, and not to judge or criticize, but to really support and listen and provide what's being asked for. I think that communication is an issue for people with autism. It doesn't matter the degree of autism they have, communication is an issue. And learning how to support and listen is is really crucial to understanding.

SPEAKER_00 20:44

One of the difficulties with autism, because you know, they talk about the spectrum, and it really is very interesting because I have a a nephew that is nonverbal, he's in his 20s, and that can be very challenging because he looks like an adult male. He's a he's a tall, you know, athletic looking boy in in his 20s, and and if you perceive him without he usually wears funny t-shirts and things like that, and he's got a nice personality, like he loves to have that. But the other day he was over and he was wearing a shirt like his dad might wear. It was a button-up shirt with a collar, and it really kind of threw me off a little bit because those visual reminders, uh someone who didn't know the specifics of his inability to communicate, his nonverbalness, really would have probably interacted with him in a different way because he was dressed so more professionally that day. And so it must be very difficult for families trying to interact with the community anywhere along the spectrum, but particularly in the more difficult and and you know, non-communicative autism. Any advice for families and folks about how to sort of give people a heads up or give them some perspective as they're interacting with their children or their grandchildren so that we can get in front of any potential miscommunication or problems?

SPEAKER_01 22:05

So, you know what it really all depends on the family and of course the individual and how they'd like to be perceived. We have young adults that can communicate, but sometimes they're difficult to understand. And so they carry with them a communication device, you know, an iPad or a tablet with some kind of app on it that helps them piece together sentences and and communicate when they're not able to be understood. Their family and friends might understand them, but the cashier at the grocery store store might not. So that's one strategy. Some families like to come right out and say, you know, this young man has autism or this young man has communication challenges, I'll speak for him, or let's listen carefully and give him some time to process what he wants to say. It's very individualized, and I think understanding that and supporting that. I think that community members who don't deal with an autistic person in their lives, but watch are on the periphery outside looking in, really need to educate themselves a little bit and and understand that a little bit of time can work wonders. Or just paying attention and looking for cues can can really help support somebody where otherwise you're just going through your day and expecting everyone to communicate with you the same way. Does that make sense?

SPEAKER_00 23:26

Yeah, absolutely. That's great advice. So I wanted to make sure we go through the your the ways that people can interact with you again. So you've got jenkaufman.com, you've got your Facebook and Instagram groups, and then you've got your other website, Grandparentingonthespectrum.com and first response autism.com. So you've got a lot of irons in this player there. Yeah.

SPEAKER_01 23:52

Certainly, it keeps me very busy.

SPEAKER_00 23:54

Plus a full-time job as a principal, so that's uh that's great. Well, very much appreciate the advice that you've given us today. And any any parting thoughts that you'd like to leave our our listeners that may have, I mean, well it seems like all almost everyone has a family member or a loved one or someone they know that has folks that could benefit from the information that you provide. So any any thoughts that you want to leave with our listeners?

SPEAKER_01 24:20

You know, I think that family members need to show up and family members need to understand that they're not going to do it perfectly, but that should not stop them from showing up. And just being there for a family who has somebody in it with autism and making sure that you're the consistent person and you're you can be counted on is really crucial to the success of everybody.

SPEAKER_00 24:42

That's very good advice. So thank you for joining us today.

SPEAKER_01 24:46

My pleasure.

SPEAKER_00 24:47

For everyone, if you uh enjoyed this podcast, no, remember that you can find advice from your advocates in anywhere that you listen to podcasts. And if you'd like to be the first to know about the next episode, uh subscribe wherever you listen to podcasts, or you can go to our website at mannerlawgroup.com or our YouTube page under Manner Law Group. And you can either hear our podcasts or watch us talk. And in most cases, we have a video that goes along with it. So thanks again, and don't forget to subscribe to advice from your advocates.