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

and grandma to be there in other capacities. 00:02:11.360 --> 00:02:15.199 And that really got me thinking that I am probably not the only person. 00:02:15.360 --> 00:02:23.360 Maybe other people don't have that education background, but grandparents have a lot of parenting experience that they bring to the table. 00:02:23.599 --> 00:02:27.439 And this is a very different situation and different dynamic. 00:02:27.599 --> 00:02:29.120 And that's what motivated me to write my book. 00:02:29.439 --> 00:02:30.319 Well, that's fascinating. 00:02:30.479 --> 00:02:44.960 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. 00:02:45.120 --> 00:03:02.879 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. 00:03:03.039 --> 00:03:05.439 Is that something similar to what you're suggesting? 00:03:05.759 --> 00:03:07.680 That is exactly what I'm suggesting. 00:03:07.759 --> 00:03:11.280 I'm sure it is very similar from your your side of the desk as well. 00:03:12.800 --> 00:03:18.319 So tell us about, uh if you don't mind, I'd like to get right into the first response to autism. 00:03:18.400 --> 00:03:19.520 How'd that come about? 00:03:19.680 --> 00:03:20.479 What what is it? 00:03:20.639 --> 00:03:21.280 What do you do? 00:03:21.439 --> 00:03:23.120 How do you do the trainings? 00:03:23.360 --> 00:03:25.520 And tell us more about the organization. 00:03:25.919 --> 00:03:26.240 Sure. 00:03:26.400 --> 00:03:39.759 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. 00:03:39.840 --> 00:03:48.240 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. 00:03:48.400 --> 00:04:40.800 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. 00:04:41.040 -->

00:04:44.480 I'm not, you know, talking from a highly clinical perspective. 00:04:44.560 --> 00:05:02.959 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. 00:05:03.360 --> 00:05:14.079 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. 00:05:14.240 --> 00:05:24.560 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. 00:05:24.879 --> 00:05:25.040 Right. 00:05:25.199 --> 00:05:32.879 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. 00:05:33.040 --> 00:05:41.199 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? 00:05:41.279 --> 00:05:42.639 And have you been drinking today? 00:05:42.800 --> 00:05:56.800 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. 00:05:57.279 --> 00:06:14.319 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. 00:06:14.720 --> 00:06:22.079 Well, uh, the whole transition from a system where a child or a young adult is supported through their school system. 00:06:22.240 --> 00:06:30.240 They hit the age of 21 here in New Jersey, and there's a sudden drop-off in services and in um educational support. 00:06:30.639 --> 00:06:38.240 And that is something that profoundly affects not only the individual, but their entire family, grandparents included. 00:06:38.560 --> 00:06:38.639 Right. 00:06:38.800 --> 00:06:38.959 Yeah. 00:06:39.040 --> 00:07:12.240 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. 00:07:12.480 --> 00:07:14.399 Yeah, they call it the services cliff. 00:07:14.480 --> 00:07:23.040 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. 00:07:23.279 --> 00:07:25.040 It's really unfortunate. 00:07:25.360 --> 00:07:28.399 Everyone is sort of underprepared for that drop off. 00:07:29.439 --> 00:07:29.839 Right? 00:07:30.079 --> 00:07:37.759 And now you've got employment issues, housing issues, relationship issues, guardianship, all of this. 00:07:37.920 --> 00:07:48.800 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. 00:07:48.959 --> 00:07:50.240 So where do you even begin? 00:07:50.399 --> 00:07:51.759 That is it's it's a challenge. 00:07:52.079 --> 00:07:56.399 From a legal perspective, that's one of the things that we definitely have conversations about. 00:07:56.639 --> 00:08:07.680 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. 00:08:07.839 --> 00:08:15.680 And so sometimes well-intentioned folks will say, Oh, well, you better get guardianship for this 18-year-old now. 00:08:15.839 --> 00:08:19.920 And our answer is typically, well, maybe, if that's necessary. 00:08:20.160 --> 00:08:30.800 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. 00:08:30.879 --> 00:08:49.679 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. 00:08:49.840 --> 00:08:53.519 But you know, sometimes it's necessary that guardianship is the appropriate answer. 00:08:53.679 --> 00:08:59.039 But we always look at it as it's definitely not the first choice that we look we explore other options first. 00:08:59.440 --> 00:09:04.960 It sort of goes right along with that least restrictive environment when you're determining an educational placement. 00:09:05.120 --> 00:09:11.279 Well, in terms of guardianship, the least restrictive as it can be is more advantageous to the individual. 00:09:11.679 --> 00:09:28.320 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. 00:09:28.480 --> 00:09:40.559 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. 00:09:40.720 --> 00:09:51.840 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? 00:09:52.159 --> 00:09:52.399 Sure. 00:09:52.559 --> 00:10:13.279 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. 00:10:13.519 --> 00:10:18.799 At my particular school, it's a one-to-one school, so every student has somebody there supporting them. 00:10:18.960 --> 00:10:20.799 And we do use ABA. 00:10:20.960 --> 00:10:23.360 We also look at the child very holistically. 00:10:23.519 --> 00:10:28.559 And our goal isn't for them to succeed within the walls of our school. 00:10:28.720 --> 00:10:31.759 The goal is for them to succeed out into the community. 00:10:31.919 --> 00:10:38.879 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. 00:10:39.120 --> 00:10:39.600 That's great. 00:10:39.759 --> 00:10:45.679 Well, I'd love to circle back on the issue with regard to the first responders. 00:10:45.840 --> 00:10:47.440 Tell me more about the organization. 00:10:47.519 --> 00:10:50.399 Is this just something that you do locally in New Jersey? 00:10:50.559 --> 00:10:54.240 Is it something that you have others that uh provide trainings? 00:10:54.399 --> 00:10:55.440 What does that look like? 00:10:55.759 --> 00:11:02.240 So, this is something that I do locally here in New Jersey, but I also do it on a wider scale via Zoom. 00:11:02.559 --> 00:11:10.879 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. 00:11:11.440 --> 00:11:18.080 I also I started out training police departments, and that has evolved to a broader first response space. 00:11:18.159 --> 00:11:34.879 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. 00:11:35.039 --> 00:11:42.000 And so we talk a lot about different situations that they find themselves in as to how to best support those students. 00:11:42.320 --> 00:11:43.759 Yeah, that's that's really great. 00:11:43.840 --> 00:11:47.759 I'm glad to hear about the inclusion of the college campuses and such. 00:11:47.840 --> 00:12:02.639 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. 00:12:02.879 --> 00:12:14.639 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. 00:12:14.879 --> 00:12:28.799 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. 00:12:29.120 --> 00:12:30.159 Yes, it it can be. 00:12:30.240 --> 00:12:40.639 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. 00:12:40.720 --> 00:13:02.480 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. 00:13:02.639 --> 00:13:06.080 Do we take out the kids or do we leave the child on the bus? 00:13:06.240 --> 00:13:10.639 Um, and having having conversations that are very specific to the needs of the community. 00:13:10.799 --> 00:13:22.080 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. 00:13:22.960 --> 00:13:32.799 Interestingly, 93 and I always like to mention this 93% of deaths, accidental deaths among people with autism involve water. 00:13:33.120 --> 00:13:33.919 Interesting. 00:13:34.159 --> 00:13:35.679 Yeah, it's a very high rate. 00:13:35.759 --> 00:13:39.440 I always say it may as well be 100% because that is such a high number. 00:13:39.759 --> 00:13:43.440 And that's a statistic from two years ago, but I'm sure it is the same. 00:13:43.759 --> 00:13:52.480 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. 00:13:52.799 --> 00:13:53.679 Yeah, that's very interesting. 00:13:53.759 --> 00:13:54.799 I would have never guessed that. 00:13:54.879 --> 00:13:59.840 That is brand new information for me, and it wouldn't have even occurred to me that that would be the case. 00:14:00.080 --> 00:14:08.559 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. 00:14:08.720 --> 00:14:12.799 So you know, it's interesting on the college campuses. 00:14:13.120 --> 00:14:41.039 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. 00:14:41.200 --> 00:15:05.840 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. 00:15:06.240 --> 00:15:07.120 That's good to hear. 00:15:07.360 --> 00:15:20.480 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. 00:15:20.639 --> 00:15:36.399 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. 00:15:37.039 --> 00:15:48.000 So having those conversations and having colleges look at through a different lens how to best support their population can be very helpful. 00:15:48.320 --> 00:16:04.480 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. 00:16:05.279 --> 00:16:12.960 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. 00:16:13.600 --> 00:16:14.799 FERPA FERPA form, yeah. 00:16:14.960 --> 00:16:15.279 FERPA. 00:16:15.519 --> 00:16:43.519 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. 00:16:43.600 --> 00:16:50.799 So we always talk about if they were in the hospital, are the parents gonna have access to the information if they got arrested? 00:16:51.279 --> 00:16:54.240 Are the parents gonna be able to assist with that? 00:16:54.480 --> 00:17:07.920 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. 00:17:08.160 --> 00:17:14.160 And there were some feedback from some probably younger people that said, well, I'd never give my parents that authority. 00:17:14.319 --> 00:17:15.039 And that's the point. 00:17:15.200 --> 00:17:18.400 If they're a if they're an adult, they can choose not to, too. 00:17:18.559 --> 00:17:27.359 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. 00:17:27.440 --> 00:17:39.680 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. 00:17:39.839 --> 00:17:44.720 So that's great to hear about the advocacy that you do with first responders. 00:17:44.799 --> 00:17:51.039 And so if we have any first responder you know organizations that are interested, what's the best way? 00:17:51.200 --> 00:17:57.119 What is the best way for those organizations to begin a conversation with you about doing some training? 00:17:57.519 --> 00:18:01.359 They can reach out to me through my website at firstresponseautism.com. 00:18:01.599 --> 00:18:02.079 That's great. 00:18:02.240 --> 00:18:06.960 And then you have an online community too, both on Instagram and and Facebook. 00:18:07.039 --> 00:18:19.680 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. 00:18:19.839 --> 00:18:37.519 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. 00:18:37.839 --> 00:18:38.160 Sure. 00:18:38.319 --> 00:18:46.799 On Facebook, our community is facebook.com slash grandparenting on the spectrum, and on Instagram, it's slash grandparenting on the spectrum. 00:18:46.880 --> 00:18:48.480 So it's pretty easy to remember. 00:18:48.799 --> 00:18:59.200 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. 00:18:59.519 --> 00:19:08.160 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. 00:19:08.400 --> 00:19:22.559 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. 00:19:22.720 --> 00:19:28.559 And and that's been an interesting shift to add to these other two groups that I'm helping out. 00:19:28.799 --> 00:19:32.079 Well, what do you hope that your audience gains, especially from your book? 00:19:32.240 --> 00:19:35.200 So who who

it might be someone that should pick up your book? 00:19:35.279 --> 00:19:41.039 And what do you hope that they they learn from that and gain from the the work that you've done? 00:19:41.359 --> 00:20:00.960 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. 00:20:01.119 --> 00:20:02.720 That was my primary focus. 00:20:02.880 --> 00:20:11.759 And I do believe overall that communication and implementing strategies, like giving somebody more processing time when you ask them a question. 00:20:11.920 --> 00:20:14.319 It's really not all that complicated. 00:20:14.960 --> 00:20:26.960 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. 00:20:27.200 --> 00:20:31.519 I think that communication is an issue for people with autism. 00:20:31.680 --> 00:20:36.160 It doesn't matter the degree of autism they have, communication is an issue. 00:20:36.400 --> 00:20:43.680 And learning how to support and listen is is really crucial to understanding. 00:20:44.079 --> 00:20:58.400 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. 00:20:58.559 --> 00:21:12.960 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. 00:21:13.119 --> 00:21:17.279 But the other day he was over and he was wearing a shirt like his dad might wear. 00:21:17.359 --> 00:21:37.039 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. 00:21:37.200 --> 00:21:48.720 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. 00:21:49.119 --> 00:22:05.519 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? 00:22:05.839 --> 00:22:12.960 So, you know what it really all depends on the family and of course the individual and how they'd like to be perceived. 00:22:13.599 --> 00:22:18.640 We have young adults that can communicate, but sometimes they're difficult to understand. 00:22:18.799 --> 00:22:31.759 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. 00:22:31.839 --> 00:22:37.359 Their family and friends might understand them, but the cashier at the grocery store store might not. 00:22:37.680 --> 00:22:39.039 So that's one strategy. 00:22:39.200 --> 00:22:52.319 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. 00:22:52.480 --> 00:22:57.039 It's very individualized, and I think understanding that and supporting that. 00:22:57.599 --> 00:23:15.920 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. 00:23:16.079 --> 00:23:25.599 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. 00:23:25.759 --> 00:23:26.559 Does that make sense? 00:23:26.880 --> 00:23:27.680 Yeah, absolutely. 00:23:27.839 --> 00:23:29.039 That's great advice. 00:23:29.279 --> 00:23:35.359 So I wanted to make sure we go through the your the ways that people can interact with you again. 00:23:35.519 --> 00:23:49.039 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. 00:23:49.119 --> 00:23:51.920 So you've got a lot of irons in this player there. 00:23:52.079 --> 00:23:52.240 Yeah. 00:23:52.640 --> 00:23:54.000 Certainly, it keeps me very busy. 00:23:54.400 --> 00:23:57.839 Plus a full-time job as a principal, so that's uh that's great. 00:23:58.160 --> 00:24:01.680 Well, very much appreciate the advice that you've given us today. 00:24:01.759 --> 00:24:17.440 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. 00:24:17.599 --> 00:24:20.240 So any any thoughts that you want to leave with our listeners? 00:24:20.640 --> 00:24:30.160 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. 00:24:30.319 --> 00:24:42.000 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. 00:24:42.319 --> 00:24:43.359 That's very good advice. 00:24:43.519 --> 00:24:45.680 So thank you for joining us today. 00:24:46.079 --> 00:24:46.960 My pleasure. 00:24:47.359 --> 00:24:55.119 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. 00:24:55.200 --> 00:25:07.519 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. 00:25:07.680 --> 00:25:11.680 And you can either hear our podcasts or watch us talk. 00:25:11.839 --> 00:25:14.799 And in most cases, we have a video that goes along with it. 00:25:14.880 --> 00:25:18.400 So thanks again, and don't forget to subscribe to advice from your advocates.