Autism in the Family with Mari Nosal, M.Ed. | EXPLORING DIFFERENT BRAINS Episode 12

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In this episode, Hackie Reitman, M.D. interviews Mari Nosal, M.Ed., author of “Ten Commandments Of Interacting With Kids On The Autism Spectrum.” Mari discusses having both a husband and a son on the autism spectrum, talks of the problem of underdeveloped social skills in the neurodiverse, and offers a few commandments from her book.

To learn more about Mari, please visit her LinkedIn page here.

Her book is currently for sale on Amazon, and can be found here. You can also visit her author page here.

You can also read the blogs she has written for Different Brains here.

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HR

Hello there, I’m Dr. Hackie Reitman, and you’re listening to Exploring Different Brains.

HR

Welcome to another episode of Exploring Different Brains, I’m Dr. Hackie Reitman and today we are so fortunate to be joined by Mari Nosal, who is the author of several books, including “The Ten Commandments of Interacting with Kids on the Spectrum,” hello Mari!

MN

Hi! How are you today?

HR

I’m doing pretty good, and I’m telling you, I’m excited to be talking to you. Now why don’t you introduce yourself to our audience?

MN

Sure. My name is Mari Nosal, I’m from Plymouth, Massachussetts, and I have a whole family of aspergians, I’m the only neurotypical in the family, and I’m also the only female. My husband, in October, just celebrated 30 years marriage.

HR

Very nice.

MN

So I’ve had a lot of experience with being around aspergians.

HR

All right, so tell us, from your point of view, how it went with the first diagnosis. Like share that with our audience.

MN

I thought something was wrong for quite a few years. And, as you know, in the last decade there has been a great growth in the wealth of knowledge for aspergians. When my son was young, he’s 28, as of February 13th–people did not know a lot about it. They often diagnosed with ADD back then, and I kept fighting with them, stating that he had processing issues, and they kept telling me that he was just lazy, oppositional defiant, the anger was actually coming out of his frustration. Actually, I used to tell them he was actually being a good boy because he was doing exactly what they told him to be, oppositional. And I fought for years and years and years, literally, until he was 15 years old to get a test. I didn’t really know my rights back then, and one thing I would suggest to parents is get on the net and never stop fighting. You have a lot more knowledge than you think you do.

 

And through the net, I found places like the Federation for Children with Special Needs, the Group for Exceptional Children, and they helped me immensely. Immensely, to know what my rights were. I had been asking for testing and I was told no, apparently, I was told later on, that if you ask for tests writing, they have to do it in 30 days. And I remember saying over and over again, repeatedly, I’ll eat my shirt if he does not have processing issues. And I just said, “but what do I know, I’m only his mother.” I live with him 24/7. And it got to the point, unfortunately, where he was going into Ninth Grade, and I wanted them to keep him back, because emotionally, as you know, people with asperger’s tend to be emotionally behind their chronological age, and I wanted him to have another year in Eighth Grade. He was struggling, really really struggling to grow emotionally a little bit more and he would be a year older than the other kids, and they still had that ideology, “Push him, he’s lazy. Push him.” And I kept saying, you’re going to push him right into depression. He went into Ninth Grade and we got a call one night that while he was away with the band on the bus, he had told another girl, “I wonder what it would be like to be dead.”

HR

Wow.

MN

And what it all came down to was, that that was when they listened to me finally and we got the testing done. And, what it came down to was, they put it as, with all of the issues he had, Ninth Grade literally slapped him in the face. He wasn’t ready to be there. He didn’t feel like he’d fit in. The demands of the academic work were too much for him, and I had a team set up within 24 hours just to help him with that. But, sadly, I hear stories now, even now, that children get to that point before they get help.

HR

Well you know–Mari, the–when I was out in Las Vegas last summer, I was giving a keynote talk to the 13th annual adolescence meetings out there–psychologists, social workers, so forth–and I was googling adolescence, and was kind of surprised to learn that the three leading causes of death were accidents, which I expected, because we all think we’re immortal as teenagers. And then homicides was number two, but suicides was a very strong number three. And yet, I found most of the audience, not their fault–I mean, I’m and M.D. and I got zero training in neurodiversity. But these people are working suicide lines, and X percentage of those who are calling in have asperger’s, autism, PTSD, I mean you name it kind of thing. And they had received no training in this. And then, if you extend that further, teachers receive very little training, generally, doctors get none, and we’re trying to change all that. And so, now getting back to your son, he obviously had gotten through that crisis.

MN

He has.

HR

And let’s fast-forward to what is he doing now, tell us about him now?

MN

He had finally gotten a job and found his niche about a year ago, selling cars of all things.

HR

Selling what?

MN

Cars, after having–experiencing many job losses, and afterward, talking about, “People do not understand asperger’s and the spectrum.” Some of his other jobs that he lost were because of his processing issues, big lines at a cash register–he would start getting anxious and struggle and give out the wrong change. So, finally, I kept pushing him–I have so many of the same ideology as you do in your book, by the way–I’m going to tell you that right now, you’ve got to push them. You can’t wrap them in a bubble, and you mention that in your book. Every time–I don’t want to call it failing, but when he lost a job, I would push him that I want to see five resumes go out every day, and remind him, that you’re not stupid. It’s just not the right job for you.

 

So, he finally found his niche, and I wasn’t going to talk about this but people have told me that it might be a good thing–to publicly speak about, you had talked about naiveness, and it’s a really really serious problem. He was doing extremely well at his job at car sales, because he’s memorized pretty much every part of the engine, knows where every car is parked. He met this girl at his last job, who was a substance abuser, and I wasn’t going to talk about it, and I’ve talked to people about it before I came on your show, and they said, “You’d be surpised how many people you could help by speaking about this.” She kind of latched onto him. He has a very very big heart, and she went into rehab while he was working with her. When she got out, she started emailing him saying, “I can’t get out of the halfway house until I have an apartment to live in.” So he decided to get an apartment, and she promised to pay half of the money. Within a couple of weeks of moving into the apartment, she was using again. And we tried to explain to him what was going on, he had a job, she was using him for his money, when he didn’t give her money she would cry, or say that he didn’t like her, or she was going to do something to herself if he didn’t give her the money, or even threaten him.

 

And there were cases when he believed the negative things she said about him. He had not had a lot of friends growing up, which is common–and to him, she was somebody who needed help, and he was going to help her. Fast-forward, he started getting behind on his car payments, she ended up getting in trouble with the law. The was a warrant out for her, and, even with that, he was still making excuses for her saying she needs somebody to believe in her.

HR

Was he using at all?

MN

What?

HR

Did he start using at all?

MN

Nope. No, and I think part of that might have been, again, where you teach them what is out there to the best of your ability I should say. I was a detox counselor for seven 1/2 years, when they were very young, at nine and 11. And I used to make a point to bring them in when I picked up my check so they could see these people and understand what could happen to them. And, I think maybe that might have kept him from using. He did drink a little bit. But he stayed away from the drugs totally, thankfully. What ended up happening is, he ended up losing the apartment, she ended up going to jail, she convinced him to pay her bail, to give her another chance to get out of jail, he lied to us, which is another thing, yes, aspergians can lie–that he said she needed help, she got out of jail, he started running out of money, he had nothing more to give her, he was behind on his car payments and everything, and when he had no more money to give, apparently she started calling up his boss and telling his boss horrible things about him. Harrassing people at the car lot. And he, subsequently, and this is recent, lost his job because of that.

 

And what we are doing now is we are working with him, and I make a point to let him know that everybody makes a mistake, but we need to learn. Because if we just say we learned, but we don’t–can’t explain what we took away from that and how we’re going to change–then I told him, it’s just lip service. And what we did, is we’ve gotten him into therapy, and what you mentioned in your book as well–so parallel to the way I think, in Aspertools. Sometimes a third party is really a good thing to have in your life, when you’re trying to help them through a crisis, because they’re not going to listen to their nasty parents who are a pain in the butt. So he has been going there weekly to learn what manipulation is and being taken advantage of, and, the thing is with this, as you also mention in your book–I know I’m being repetitive here, but I really–it was just so parallel to the way I think, it was incredible. They get to an age, in their 20’s, and they go through something like this, and you know how it’s going to end up.

 

But, you can’t lock them in the bedroom either. As scared as you are, when he moved into the apartment, I gave him a couple of gift cards and–you know, wished him well, and the main point with a situation like that, if any parent is ever in one like that, if you say absolutely you can’t see them, in their twenties you can’t do that, because you’re going to push them totally away. They’re going to go. And, if they get trouble–when he fell, he knew he could come back home, and that we were going to be there for him because we kept that contact open. I texted him every day, and he was always welcome to come over and visit, so he knew, no matter what, that he had a safe haven to come home to. Giving them ultimatums can be very deleterious in the end. That could have been a totally different situation, he could have got hurt, he might have thought that he couldn’t come home and been homeless–so what you have to learn is not to let–you don’t really let go, but you need to step back–but you have to be in a proximity when they fall, to be there to help them pick up the pieces.

HR

Well, Mari, you’ve obviously learned so much, and what I’d like you to do for our audience, is take us through the 10 commandments of interacting with kids on the autism spectrum. Let’s hear, in all you’ve learned, what you consider the most important chapters in your book, the most important commandments–that the people watching this or listening to this or reading this can use.

MN

I have several right here–that I really, really wrote with feelings, kind of a combination of being an educator, working in human service, and, you know, parenting. And being married to somebody on the spectrum as well. This is a big one: Thou shall not perceive me as diagnosis, it is not true that once you have worked with an autistic child, you have worked with all of them. They, as you mention with neurodiversity, are as different, as anybody else. My husband is a brilliant engineer, my son has mapping difficulties and has a lot of difficulty processing mathematical concepts. They are all very very different. His forte is english. My husband is math. There are many different degrees of autism, hence the meaning of the term, “autism spectrum.” We have distinct personalities and talents just like you. We may present ourselves as non-verbal, verbal, anxious, but we might have an advanced expressive vocabulary, receptive, aggressive, we may be shy, funny, ambulatory, have a mobility issue, even have a gifted IQ or a lower IQ. Spend time getting to know me, you may learn to appreciate my talent and the contributions that I can make within the classroom and to my classmates and society. In other words, don’t judge me before you get to know me. Ask questions. Interact with me. And that was a very, very important one to me.

 

Another one that I wrote because of personal feelings was having my son grow up, and I’m sure you’ve seen that time and time again, where they’re labeled as oppositional defiant, and a lot of times, what it is is, they don’t understand what you want them to do, because you did not express it in a way that they could learn and absorb it. I wrote thou shall not assume I am defiant. My ears are extremely sensitive. They could start having a meltdown because of loud noises in the room, lights, a ticking clock could be the equivalent to the roar of a drum in their ears. If I’m sitting at my desk and you give me directives from the other side of the classroom, I may not hear you correctly, because everything else in the room is disorienting them. I have difficulty desensitizing myself from a sound, lights, I may be struggling with an attempt to plot out the whirring of even a pencil sharpener; ticking clock, rain beating on the window pane, etc. They often hurt my ears and create one jumbled sound, because they can’t separate all of the noises and the activities in the room. It becomes a blur to them.

HR

So you went back to school later in life?

MN

I did.

HR

And what were the courses you took and what made you decide to do that?

MN

First of all, because I felt like what we went through was an experience that I could turn into a lesson to help other people in the world that are going through the same thing. My attitude was he got a very late diagnosis, but you can’t look back, you only need to look forward. That’s basically my lense on how I look at life. So what am I going to do here? I decided, with great passion, that I wanted to make sure, in a little bit of a eutopian idea, that other people never went through what we did, and felt like they walked in the dark like we did. And never felt like they were alone. So, what I did is, I went back to school. Specifically because of my son, and I’ve often told him, if you did not have asperger’s, I would not be helping all of the other people I’m helping. I went back to school because of you. Because of what you went through, and I don’t want other people to have to go through what we did, and I let him know that. On a positive note, my goal in going back to educational foundations, is what it is, is basically creating the programs. I didn’t want to be behind a desk, I liked to get my hands dirty. I like to work with a difficult population and I like to know the names of the people I’m working with, and if I see a problem, I want to troubleshoot and be available to change that problem. And educational foundations basically goes across the board. It’s regular ed, special ed, reading, standard ed, and you take courses for it like psychoeducational assessment. So there’s a little bit of psychology in it as well. And I had differentiated education, which is very important right now, and I think many many more teachers need to be trained in that, because there’s many inclusive classrooms now, and they need to know how to work with a neurodiverse class. As you mentioned, a lot of them are not trained in that.

HR

Yeah, and it’s not their fault, and that’s why we have to make sure that they’re trained.

MN

No, not at all, not at all.

HR

Tell us about your workshops.

MN

Basically, what I do is, is varied. I work with parent groups, present to parents, basically, with them, what I do is I speak about my own background and I break my ten commandments book into three areas and I use that power point to elaborate on what I’m doing, and also providing samples of what they could do to troubleshoot. So I use the ten commandments for parents, and work with parent groups. I’ve worked with managerial groups in school-age programs, chains of private schools, helping them understand how to work with these kids, and I also provide ways to help them. For instance, if a kid is pinching, they might not understand that they’re going to hurt somebody. So I present to everybody, a sample of what I’d call, a “pinching board.” It’s a piece of paper with a clothes pin on it, and what you do is, as the child pinches you teach them to substitute the clothes pin on the paper, rather than pinch somebody in the skin.

HR

That’s a nice little tool.

MN

I also model. I’ll get a couple of people in the audience, if they’re willing and have worked in the managerial groups–if they had worked with children like this–and I’ll present an example of how to prevent them from having a meltdown when you’re speaking with them in a class, or at home even, for that matter. There’s a really great book called, “All Children are Not Created Equal,” it’s an education book. Very well-written, and what they’re basically talking about is, is that no, you cannot treat each child in the room the same. You have to look at their situation, and again be trained in that, and deal with them in a way that they learn. And I often model how to work with somebody on the spectrum if you’re trying to explain something to them, and they’re on the boarder of having a meltdown. You never tell them–force them to look you in the eye. What you do is, you get down on one knee and stay about four feet away from them. And, what you can do is, rather than just saying, “look me in the eye,” is say, if you can hear me please nod your head. And what you’re doing when you do that is, you’re going to build a trust. And, little by little, if you look really close, you’re going to see them start rolling their eyeballs sideways, looking at you–and then darting them back. And if you continue to do this, eventually they’re going to let you get a little bit closer to them. But if you expect them to look you in the eye, and you’re too close to them, they’re going to melt down. You’ve invaded their space, so you have to adjust what you’re doing in the class, or even at home with them, to accommodate their needs and their personal body space area that they need. So, basically, it’s varied. I train people on how to interact with them, and a big thing with me is prevention, before remediation.

HR

All right. Now you’ve mentioned that your husband has some asperger’s traits?

MN

He does. He does. Not quite to the degree of my son, but like I said, it’s been an experience for me and them, because not only do I have to learn about them, but they have to learn about me. We have to have–and this goes into the work place–a mutual respect for each other. If you want me to understand where you’re coming from, you need to understand where I’m coming from. And what I do with him as well as my son, is step back. I’ve learned, if he is in a certain mood, that he might need half an hour or an hour of space alone before we can speak, otherwise he might get upset, irritated. At the same token, I’ve taught him that you may not understand when I’m sad, which is something that took a long time for him to learn, but if I’m having a problem, please come over and at least put your arm around me. So I’ve modified what I expect out of him. It’s been a real work in progress, being the only neurotypical in the house and also the only female. I have my younger son with asperger’s, and mapping difficulties, motor skill issues, my husband, with–I don’t want to say a low form of asperger’s, I don’t really like that word, but he’s on the spectrum as well. I have a son 22 months older than my other one, who at 11 years old came down with a siezure disorder.

HR

Well, they all go together. The way I’m seeing it, Mari, is that we’re all on a spectrum. Not just a spectrum of autism. That all of our brains are different and all of the wiring is a little bit different, and as you were saying before, if you’ve met one aspie, you’ve met one aspie. If I met one autistic, I’ve met one autistic person, or person who happens to have autism, who also might have a siezure disorder, and PTSD, and so many other things come into play, and it’s almost like a mix and match many times. Very few things occur in isolation, and yet we’re–we kind of try to make it even one-size-fits-all within the different labels, so-to-speak, and what we’ve learned is, as you’ve pointed out, is it’s not one-size-fits-all, and there is a niche for everybody if we look hard enough for many of us. I remember Rebecca, when she was tutoring in Georgia, my daughter, before she came back here to Florida, she had a student that all of the teachers were puling their hair out with, because all he would do is talk about cars, cars, cars, cars, cars, and he was flunking math and everything, and my daughter started tutoring him, and just did all the math problems with cars and he was getting 100s.

 

And then one of the local car dealers there hired him and he sold 38 cars in one month. He just loved cars. Loved it. And I think that we, as a society, spend a lot of time saying, “don’t do that, be like everybody else,” instead of thinking how we can harness that hyper interest in a positive way, earn a living with it and live happily ever after, which sounds whimsical, but if we try to go with our strengths and try to go with positive energy, and try to connect with the individual, we have a better shot, and as you pointed out today, too, is that we as parents are sometimes counterproductive because of the very fact that we are the loving, caring parents who are in various stages of, depending on the individual, of ignorance, denial, our own stubbornness, it’s going to be OK, we’re going to make this work; as opposed to a rather dispassionate third party that will be heeded a lot more by the individual.

MN

Exactly, like I mentioned earlier.

HR

Yes. As you did, as you did mention. Now how do viewers and listeners found out more about your book, your workshops and about you?

MN

People can contact me for workshops on linkedin, and we can take it from there, talk to them and then I’ll give them my personal email if they’re serious inquiries. For my books, amazon.com, Barnes & Noble online.

HR

We’ve spoken about the Ten Commandments. Tell us about your other works.

MN

I wrote a book with curriculum ideas that I used in my school-age programs and I divise. My kids were ages 5-13 years old. I had everything from intermittent explosive disorder in my class to bipolar disorder, PTSD, OCD, and you name it. Everything in between. And my curriculum had to be developed for children from that large, vast age group and learning difficulties to be able to get something out of it. So what I did was I came up with curriculum ideas where you could accomodate everybody in the room, without them feeling like they were being singled out. Like I would play, for instance, musical paper plates rather than chairs, because kids who had motor skill issues would not fall into a chair and get hurt. The paper plates were harmless and I would turn it into a learning lesson by putting letters on the plates, and again, rather than singling the children out, what I would do is, if a child who I knew was very, very highly gifted, stepped on the letter A for instance, they would stop when the music stopped and tell me a word that began with the letter ‘A,’ and an object. If the child wasn’t particularly literate, or had struggled, what I would do is ask him, “Billy, tell me what the letter was.” So I knew what each child was capable of but they all play that game together, but I would adjust it without singling them out and they worked as a team they worked as a group. So every single curriculum idea in my book is made to be adapted no matter what capabilities that that child has in the classroom so they can all work as a team and no child is left out.

MN

It’s Curriculum Ideas, for School Age Programs.

HR

I’m going to be speaking at the American Academy of Orthopedic Surgeons annual meeting–what advice would you give them, what commandments would you give to them?

MN

This is a really important one, if you dont mind me reading it because I want to do it verbatum. Thou shall not attempt to fix me. I cannot be fixed. And this is something people need to learn. We cannot fix them and adjust them to the norms, the social norms that neurotypicals want them to conform to. We need to learn to adjust to how they think, how they work. This is a phrase I made up, I kind of like am really big on making up metaphors. “I am not the equivalent of a broken engine in your automobile that merely needs adjustments here and there to run like new. Besides, my mom and dad say they like me just the way I am. Respect me for my gifts and talents that I bring into your class and into society, and I have many. You can help me by teaching me compensatory strategies, you can help me by teaching me to go to a quiet area in the class to read or play quietly when I am overstimulated. At first, and this is a step done very simply, I may need many verbal or physical prompts in the beginning from you to recognize the signs of overstimulation. As time goes by, I will internalize and crystallize that motor redirection through repetition and I will go to my quiet place on my own.” Remember, and this is a big one, because a lot of times these kids get reprimanded, told what’s wrong with them–“Remember to praise me verbally. For example, I may love to write I may have the issues with a pencil grip, holding a pencil makes my hand hurt, perhaps you could put a gripper on my pencil, increase my grasp and initiative to write, so I do not go on strike during lessons, and praise my handwriting and my efforts as I go along.”

HR

Well Mari, thank you very much, this has been a very interesting interview. We’ve been talking to Mari Nosal, who is the author of The Ten Commandments of Interacting with Kids on the Spectrum. Mari, thank you very much. It’s been a pleasure to have you.

MN

It was a pleasure, thank you.

HR

We’ve been talking to Mari Nosal, the author of the Ten Commandments of Interacting with Kids on the Autism Spectrum. For more information, visit us at DifferentBrains.com.

 

 

Author Image
Dr. Harold “Hackie” Reitman is the founder of DifferentBrains.com. He is an entrepreneur, philanthropist, children’s activist, retired orthopaedic surgeon, and a former professional heavyweight boxer. He who currently serves as the CEO of Fort Lauderdale, Fla.-based PCE Media, LLC, the multi-platform production company he founded in 2004. Dr. Reitman wrote, executive produced and co-directed the full-length independent film, “The Square Root of 2” (starring Darby Stanchfield of ABC’s “Scandal”), and is the author of the book “Aspertools: A Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders and Neurodiversity” from HCI Publishing. He also hosts the DifferentBrains.com interview show “Exploring Different Brains.”

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