7 Autism Hacks Every Parent of a Profoundly Autistic Adult Should Know with Mike Carr

Mike Carr (00:03):

Welcome back this week to another Autism Labs podcast. I think I've got something that you're going to find hopefully valuable. These are going to be seven autism hacks for parents, parents of severely or profoundly autistic individuals in particular, but could be any autistic person, and you just need some help in this tough journey. So the first hack is, what's the one word you should use at least 10 times a day? And I find myself remiss in doing this, but I just wanted to mention how helpful it's been for me. So what do you think that one word is? The one word you should use at least 10 times a day. Thanks, simple. But if it's genuine, if it's authentic, it works wonders, right? Let's start with your spouse, and if this is a dad watching right now, like me, man, thank your wife all the time, right?

(00:55):

I mean the heavy load that she's carrying for your severely autistic child, especially if he's a young adult or she's a young adult, it's a big load and probably the mom's doing more, quite honestly than you are dad. So thank her for it. But regardless, thank the staff, the folks that are showing up day after day and working with your son or your daughter, teachers, therapists, anybody that's involved in the care and making your son or daughter's life a little more joyous and a little bit more interesting and exciting and giving them a little bit of happiness from day to day and helping them through those behavior challenges or whatever those challenges might be. So that's hack number one. Just use that. Thanks word a lot. Hack number two, this has to do with how do you reduce anxiety and stress? And what I believe, at least with our son, who's 35 now, is better communications.

(01:52):

A lot of behaviors underlying cause is anxiety, especially if you have a nonverbal son or daughter that doesn't really understand when you tell them to do something or you tell 'em something's fixing to happen or where you're going to go that day. And so there's this, just imagine this inherent anxiety. They wake up and they don't know what's fixing to happen, or if it's out of their normal routine, oh my gosh, what's going to happen now? And if they're nonverbal, well, how do you communicate that? So what we do, well, you guys probably do too, but it's worth reiterating, is a visual schedule, right? Pictures, whether it's on an iPad, iPhone, just a picture board if you will, a book of pictures showing them an image of where you're going. Just anything to improve communications really helps and pay attention to nonverbal cues, right? Watch and look and really observe your son or daughter.

(02:46):

You probably do this naturally if you're a parent. Moms I know do dads may not quite as much and are they okay? Are they looking a little anxious? Are they doing something a little bit weird? Or that maybe is a precursor to a behavior meltdown? So looking at not just verbal communications or visual communications, but signs, visual cues about what might be happening that's made a big deal. And of course, if something is happening, don't lose your cool, right? Stay calm. Our son has seizures. Sometimes they're pretty bad, but that calmness, that hey, you're the steady voice that you're paying attention to what's going on. You're trying to communicate perhaps through music, just calm the individual down or the folks down the team down and assure them everything's going to be okay. So communications I think is just hugely important and something that's not necessarily always easy to accomplish, but if it can be done, it can be done properly.

(03:36):

It almost always relieves anxiety and stress with your son or daughter who's autistic and with the rest of the crew, the rest of the team that's involved. Number three, improve positive behavior. Well, of course you want to improve positive behavior. Well, how do you do this? One of the things I forget to do is just lots of praise, right? Be the cheerleader when your son or daughter does something that's surprising or that they're supposed to do or that you've been working on for hours or days or weeks and they finally do it, man, high five, congratulations, clap, sing, whatever. Get right in their face and smile. Just show the fact that this is a big deal. This is something, oh my goodness. And our son, Michael, loves, loves, loves to hear that he likes the cheerleader kind of vibe that he's done something great or he is done.

(04:22):

Something that he maybe doesn't do as consistently as we'd like him to put away things and put away his clothes and fold his laundry and not wet his bed at night, which is a big cods send after 35 years, he still wears night. But anything like that, those high fives, those enthusiastic comments are just hugely important. Hack number four, reduce negative behavior. Okay, so how do you increase positive behavior, the cheerleader? Well, how do you reduce negative behavior? And this is a bit counterintuitive because this took me a long time to learn. You don't give them attention when they do something bad for Michael. He doesn't distinguish between something that he does that's desirable or something that he does that's undesirable. If I react, he's one, he's excited, so he'll look me right in the eye and he'll turn those puzzles upside down and I throw all over the floor right before bed, or he'll look at me right in the eye and he'll do something else he knows he's not supposed to do.

(05:20):

And if I react, he's excited, he'll giggle, he'll laugh, he'll smile. And boy, I know we're head down the wrong path. So what I try to do is not react at all or I vert my eyes or I point at what I want him to do and I turn my head aside so can see my expression or if I am going to laugh, he's done something that's just silly, but he knows he's not supposed to do it again. I'm not trying to let him see me smile. So if there's no reaction, I'm not rewarding that negative behavior and he ultimately, if I just ignore it, we'll stop doing it or we'll pick up whatever needs to be done. Okay, hack number five, give your son or daughter undivided attention. They know when you're paying attention just like your neurotypical kids do, and if you're bored because it's not quite as stimulating an exercise or an activity with them.

(06:08):

But if you show that you're still paying attention to them and you're still talking to them and you're still giving 'em that praise and you're looking 'em in the eye when they're looking at you in the eye and you're smiling at something that they do, however trivial or silly it might seem to you, it makes a big difference. And what I try to do is I try to pick activities that for me personally aren't so hard to do, but that I know Michael likes to. So if it's outside, we might go for a walk, we might play basketball, he loves basketball, we might even go for a swim. Those are all things that I enjoy doing, he enjoys doing, and then together it sort of builds that father-son bond inside we might play, we, he's got an old Nintendo wi and there's a hundred pin bowling game on this Wii, and I mean you cannot miss with a hundred pins.

(06:48):

It makes no difference where you throw the ball with the the we of ice, you're going to hit at least one pin. And so there's always this sense of excitement and fun and lots of cheerleading and clapping and high fives and it makes a difference. I'm paying attention to having fun together. We're doing something that's cool. Another outside activity, now that it's summer here in Austin is a central market, has free music on Thursday, Friday, Saturday nights, or maybe it's Friday, Saturday, Sunday nights. Anyway, whatever nights, whatever nights you can see, I'm a well-informed dad. Whatever nights it is, we will take him for dinner and so we arrive. We have to immediately buy him some chicken salad. He's not going to wait for his dinner to be served. At least we've not figured out how to consistently get that behavior. We'll go sit on a picnic table, there's a park right behind the picnic table and then the music is on a deck on the other side.

(07:34):

He just loves it, right? There are lots of kids running around, there's lots of noise. So no one really cares what he's doing. He gets to eat his chicken salad if he wants to get up and wander around the park, he can do that. If he wants to listen to music, he can do that. It's just a fun family event. We're paying attention to him. We're talking to him about the music. We're having a good time together. And then inside, again, puzzles. He likes to do puzzles. Some of them are pretty boring if he's done them over and over again. It's sort of hard to get excited about doing a puzzle with him, but you turn it sideways, I turn it upside down. He is of his memory is such that he's very visual and very pattern oriented. So the same exact puzzle that he's worked a thousand times, if I change the orientation 90 degrees, he has trouble doing it.

(08:12):

And so that makes it a little bit more interesting for me. It makes it a little bit more challenging for him, but regardless of what that is, hack number five, give your son or daughter undivided attention hack number six, offer them a choice rather than insisting that they do just one thing or let them know what's coming next if they do something. So this idea of offering choices, do you want go do the laundry or do you want to go ahead and put your clothes away first? Do you want to fold the laundry or do you want to put your clothes away first? Either one of those is important because some stuff's not even folded. Some stuff hasn't been. He may prefer to get up out of his chair and go put stuff away in his bedroom and then come back and do it again.

(08:52):

So give him a two choices. It sort of gives him some sense of responsibility, empowerment that he's making the decision, even though those are two choices that either one of which is perfectly fine with us, or if he does something, he knows what's coming next. So it's this choice that, okay, if you fold the laundry, we'll get to go outside and play some basketball. Or if you put all your puzzles away neatly, you're get to have a snack. Both of those are again, choices. The motivator of course is snack versus basketball, need to do both of them, and that's another way to offer choices and involve him in that decision making process. The last hack I want to talk to you about today, hack number seven is probably the one you're going to disagree with me on the most. So please hear me out. Please pay attention to what I'm saying.

(09:36):

I think there's some value in this, at least from what we've learned. And who's your priority, right? Who's your number one priority? And it's probably your son, your child, right? Your kids are always your number one priority. What I've learned when it comes to our team is Michael's not the number one priority. Our child, our neuro divergent child, severely autistic is not our number one priority. It's the team. Now you're going to think that sounds bizarre and wrong. In no way hose Jose O. Here's why. We tried making our son the priority for over 10 years. We didn't build the culture and we didn't build the family atmosphere amongst all his staff. And so we constantly fought turnover and people not showing up right before a scheduled time because something else came up. The guy that they've been waiting to get asked out from finally ask him out on a date and they've been waiting for weeks or months and they're going to go out on a date night, it makes no difference.

(10:28):

So we'd also planned to go out on a date night. No, no, they're going to do that. Or they get an opportunity to go to a concert and they're going to go with all their buds. And so the guy says, Hey, I'm going to go in this concert. It's a really cool opportunity if you make them the priority and you have a leader, and this is key. You have to have a leader that builds the right culture and the leader sort of iue upon the rest of the team that this is a huge responsibility. And if you don't show up somebody else on our team's going to have to fill your slot. We always have backup right now. We finally have backup for everything. And so that's going to inconvenience someone else that's part of your team you respect and you have fun with, and you don't want to really do that disservice to.

(11:06):

So if you build the right culture, and this goes back to Herb Kelleher, who was the CEO of Southwest Airlines for a long time, and he did this. He said that our employees come first. And when the employees came first, they treated the customers exactly the way that he wanted them treated because the employees felt valued and they wanted that joy and that fulfillment to be then shared with the customer. So the same sort of true in taking care of your kiddos. Now, you may not believe this, this is a true story and it blew us away when it happened. If you do this right, some phenomenal things are going to happen. So a couple years ago, I don't know if you guys recall, Southwest Airlines reservation system failed over Christmas. They canceled thousands of flights. We had a team member who was in California vacationing with her family, with her mom and folks, and she had a shift that was scheduled right after Christmas and she was going to fly Southwest Airlines to get back.

(11:58):

Her flight was canceled so she could not make it. So here's what happened. Her mother drove her overnight all the way from California to Austin, Texas so she could make her shift. Now that is phenomenal, unbelievable. We could never have ask her to do that. We didn't ask her to do that. But when you have the right team and when you put the team members first and they feel that sense of responsibility and quite frankly, love for your son or daughter, it's just as if they were their own brother or sister, amazing things happen. So that's the last hack I wanted to leave you with. You may not agree with me and it's tough to do because you have to have the right culture or they'll take advantage of you. But if you put the team first and you have that right leader, you're going to end up having higher quality care for your son or daughter if you try to always put your son or daughter first, and you're going to have a loyalty and a following and a commitment and less turnover and all the other things that seem to be so challenging.

(12:55):

That's it for this week. Hope you have a wonderful rest of your week. See you.