In Episode 3, Morénike Giwa Onaiwu visits Mom Autism Money to educate us on the best ways to teach boundary-setting skills to our children. Please be aware that this episode does tangentially address topics such as abuse, so it may not be the best one to listen to with your children. But it’s an extremely important one to listen to as a parent.
Morénike is an educator, advocate, scholar, parent and Autistic adult, and brings deep perspective to topics such as ABA therapy and alternatives, empowering your child to own their own ‘no,’ and helping them prepare to protect themselves from a world that is almost assuredly going to subject them to abuse.
At the end, Morénike provides us with financial literacy resources and ways to teach your child internal boundaries when it comes to money management skills.
Enter to win a free trial from today’s sponsor: The Safety Sleeper.
Keep an eye out for Neurodiversity en Noir, which you’ll be able to preorder in coming weeks.
Get Sincerely, Your Autistic Child today.
Familiarize yourself with the Autistic Women & Nonbinary Network.
Check out the Ed Wiley Autism Acceptance Lending Library.
Get the open access book, Autistic Community and the Neurodiversity Movement: Stories from the Front Lines.
Subscribe to the Mom Autism Money email list.
Join the Mom Autism Money FB community.
Check out Morenike’s recommendations of Ally Wallet Wise & NEFE’s Cash Course.
Brynne: Hi, everyone. Welcome to Mom Autism Money. Joyce and I are here today with guest Morénike Giwa Onaiwu. And she is an educator, writer, public speaker, parent, and global advocate whose work focuses on meaningful community involvement and leadership, disability, racial, and gender equity, dismantling stigma, and inclusion and empowerment. Often drawing from personal background as a person of color in a neurodiverse and serodifferent family, a late-diagnosed adult on the autism spectrum, and relevant educational and professional experience, Morénike is a highly sought after presenter, consultant, and subject matter expert.
Morénike has been an invited speaker in the White House, at the United Nations Headquarters, a keynote speaker and/or presenter at numerous conferences, and provides diversity, research, and disability consulting to several organizations. Morénike, who is currently a Humanities Scholar at Rice University and a doctoral candidate in education, has been published by Beacon Press and Palgrave MacMillan and will release an edited collection on neurodiversity in the Black community in 2022 with Jessica Kingsley Publishing.
And today Morénike is joining us to talk a little bit about boundaries and how we can teach our children to set those. And, Joyce, we listened to this episode together. I was blown away by Morénike. She gave me chills. She taught me so much. There’s so much in there that I’m going to take away.
Joyce: I listened to it yesterday.
I was blown away. I was shocked and I learned so much, but I encourage our listeners to really listen to what she has to say, because it was such a very informative, it was, it was deep and I, I actually enjoyed it. I feel that it needed to be said. I just had never heard it in this, this way. I never thought about boundaries – I mean I do think about boundaries when it comes to my kids, but not in the way she mentioned. There was a few things that she said that I was like, okay, I need to, I need to go do this.
How about you?
Brynne: Definitely. There’s some areas where I was like, oh my gosh, I didn’t even know I needed to up my game, but now I know. And she gave me the tools that I needed to do better. And I hope that she does the same for all of you guys listening. And just a couple of things before we get started.
First of all, we want to thank our season sponsors, safety sleeper. You can find deals and special giveaways exclusively for Mom Autism Money listeners at safetysleeper.com/MAM. And also, before we get started, we just want to let you guys know that this episode is a little bit different. We touch kind of tangentially — 2e don’t get too explicit or deep into it, but we do talk a little bit about sexual abuse. So this is an episode where if you have your kids in the car or just children running around period, this might not be the best episode to listen to with them. So just bear that in mind as you listen, and without further ado, let’s talk to Morénike.
So today we are going to be talking about boundaries and specifically how we can best teach those boundaries and those boundaries setting skills to our autistic children. And Morénike I’m wondering if you can just talk to us a little bit about why this is such, such an important practice and why it’s so important that parents get it right.
Morénike: It’s beyond important. I think it’s one of the most important things that a person can convey to their child. I think that, you know, yes, we want our children to be like kind or good people, ethical people. We want them to care about others. We want them to be able to have a sense of self-actualization and succeed.
All of those things are important, but I think before those things, at the foundational level, whether you’ve got a child that’s inherently kind, or your kid’s kind of a jerk, you know, like their personality type or whatever, or whatever they’re going to be or not be in life, I think that they need to be safe.
They need to have a sense of autonomy. And so boundaries are, are key because I think that just a lot of the hallmarks of being on the spectrum, we have characteristics that put us at higher risk of being taken advantage of, being manipulated, not being able to discern when someone is genuine or not. Um, not knowing whether or not our need, if it diverges from that of the other people around us is quote unquote a legitimate one or, or whether we should suppress it and, and move forward. And I think all of those things put us emotionally and physically, financially as well in a lot of ways in a very vulnerable place. And so everyone deserves, you know, has a right to their know. Everyone has a right to some semblance of control over their lives.
Like even, you know, if we think about in the United States and other countries, for example, a person can be imprisoned, but you still have rights. You still have a right to medical care. You still have a right to an attorney. You know, you have a right to representation and so forth. Everyone, regardless of who they are, hasa base level of rights.
And I think that the world seems to have forgotten that when it comes to autistic people, particularly autistic children, especially when we look at the, you know, a lot of the early intervention and a lot of the, kind of more popular quote unquote evidence-based practices.
Brynne: No, definitely. And that’s one thing that I want to get into specifically ABA therapy, um, for some of our parents who are listening and aren’t aware there is a history with ABA therapy, where when we look back at how it’s been practiced, typically those boundaries are not only not respected, but that’s actually sometimes with some therapists, a purpose of the therapy is to kind of look at those things that you need to suppress, and it’s not always ethically practiced in like teaching our children where the line between suppressing the behaviors is and having your own firm no. Um, I’m wondering if you can talk about that a little bit more expertly than I can. And then for some of our parents that are aware of ABA therapy, they do have this big question of my kid like my kid needs behavioral therapy. The only way I can get it through the state is through ABA. How do I do this without being a bad parent or doing something that’s going to be counterproductive to my child’s wellbeing long-term?
Morenike: You know, this is such a quandary. And it’s one that I think, um, probably keeps a lot of parents up at night because it’s a situation where you want or need X, but only exists in this capacity. So what do you do? And it makes me think about a lot of the conversations that people are having, um, surrounding like abolition and the fact that there are some communities that don’t have those alternative resources for mental health or other social services that they could truly benefit from, that they could use in lieu of the, you know, the policing system that we currently have.
And so it’s, you know, people are essentially not sure what to fill the gap with. That would be more useful. And so the majority of people, like, I think about like, you know, myself, you know, my children’s autism diagnoses proceeded mine. And like every other parent, probably I’ve been in that situation where you’re sitting in that room, you know, they’re giving you after you’ve done all these different assessments and evaluations and this and that, and they’re giving you the diagnosis and they’re talking to you and telling you about what you need to do, and they’re giving you the a hundred day kit.
And, um, it’s telling you about, um, you know, what the quote unquote evidence-based practices and how you want your child to be quote unquote indistinguishable from the norm and hit hard, hit early and all of those different things. And so. What, you know, a parent, most parents you’re trusting the team that’s working with you trusting the, these professionals who’ve gone to umpteen years of advanced university training to be able to, you know, work in these fields and people who work with, you know, these diagnoses and you’re wanting to support your child and help them be the best they can be. And so you’re kind of in a very raw, vulnerable state, and you’re trusting that the information that you’re getting is objective and is that it takes into consideration.
The big picture, but unfortunately that’s not the case. Like, so what you’re told is that this, this is an evidence-based practice. It works. It’s been demonstrated this way, this way, this way. Um, in this, this age of children, it’s been replicated many times, um, it has to be done X amount of hours and in this manner to be useful.
And most parents like, you’re like, okay, I’m all in, what do I have to do? What do I have to do? Sign me up. How much do I have to pay? I don’t care. Do I have to drive across town every day, whatever? I’m in it for my kid. The problem is that people are being sold a, a one size fits all. When I don’t even think that necessarily in this case, one size even fits most.
And there, I think the, the claims of the evidence-base are exaggerated at best. And I think that people also don’t share the, kind of the, the historical aspect that would be beneficial to know about something, if you’re going to make a decision. And so for me, it. I hear a lot of ABA practitioners, um, or proponents of, you know, ABA applied behavioral analysis who mentioned, okay, yes, we’ll acknowledge that in the past, there was this, this, this, and that. And they talk about the fact that it was originated from, you know, behaviorism. And we talk about, you know about BF Skinner and we know about the animal training, and we know about the, you know, some of the things that we’re used to the, the, to deter little cis-gender boys who were, whose behavior was deemed as to effeminate.
And so there’s all of these different things, a lot of aversives and a lot of things that were kind of looking at the external behavior and utilizing that to make determinations and to make plans. And so a lot of people say it has changed. It’s not the way that it used to be. It’s not like that, et cetera, et cetera.
But I think that what they fail to look at is.. a lot of things I can, I can talk to about slavery or I can talk about racism or, you know, so my family’s from west Africa, so my experiences are different than my great grandparents who grew up under colonial rule. Or if we’re here talking about America, the experiences of someone being raised in, you know, living in 2021 are certainly very different than someone who lived in the Jim Crow south in the fifties or sixties or someone who lived in, you know, the slave states in the 1800s.
Or what have you. So yes, they’re different. But does that mean that it’s necessarily better? Because we still know, we can look at all of the statistics today, um, that let us know that there are innumerable social determinants and disparities and issues that are faced by people of color. Maybe it’s not being lynched, and hanging from a tree.
Maybe it’s not an overseer’s whip on your back, but maybe it’s being forced out of your neighborhood because of gentrification, maybe it’s the high mortality and morbidity rate that you’ll have if you’re a black or brown woman giving, you know, who’s expecting a child, maybe it’s the schools that you’re at, your children are attending that are less likely to have certified educators and have a lot more transition, or it’s the ecological disparities that you have because you may be more likely to be in an area that has factories or whatever.
So there’s all kinds of things that don’t look the way they used to look before. But that doesn’t mean that they’re better just because they’re different. And so I think that people mentioned, okay, so ABA does not do you know, maybe they no longer have loud noises and smells of ammonia or slapping people across the face or some of those other things that were all regularly practiced by the way in ABA.
I would venture to say that, um, that is not, what is typically seen, but that doesn’t make the, the, what we currently have better. There’s a lot of ways to be abusive and manipulative to a person without ever putting a finger on them without ever touching them. It can be done with words. It can be done with, um, gestures.
It can be done with withholding things that a person needs. And I think that a lot of the. Practices of ABA have the capacity to create a lot of psychological trauma in a person, in a child, in a group of people who crave routine and sameness, which is why echolalia and scripting is common. And we use it to soothe or to communicate, which is why stimming occurs, which is why the stereotypy of our movements or some of our social communication, or what have you, whether it’s written or aloud is the way that it is.
And yet you’re taking circumstances where we can’t have what we need, can’t communicate or move in the ways that I feel most natural for us or that soothe us, or, um, you know, everything becomes very artificial. And I think that you, you learn quickly that it doesn’t matter what you want or what you need.
You need to perform in this way in order to get a positive response or to get what you want or need, or to get attention. And I think that’s very dangerous in a world where you’re already, where everything is already feels kind of flipped upside down for you or there to be no safe Haven for even home your, you know, your parents or the people you call your teacher or your caregiver.
Because if you are typically, if you have a child who has disabilities, these providers are a pretty regular part of your life. Um, at least at certain intervals, um, you know them by name, they know you by name, they’re either coming in your home and providing services, or you’re regularly going to a particular office or clinic or place for services.
And so these aren’t strangers. These are people who your child knows them by sight, and they know your child by sight, and that you, you see them multiple times a week. And so these are people that are, you know, trusted authority figures in your life, not strangers. And these are the people who are. Who won’t, you know, won’t make, won’t speak to you unless you make eye contact, or unless you answer a question a certain way, or, you know, will take the things that you want away if you don’t move and all of these different things. And I just feel like it basically, it teaches you that those closest to you, that you love, that you trust that you care for and that care for you, and that know you and that are in your life on a regular basis, have sent a message that what you want or need or feel is inferior.
And it, you know, and you need to defer to what they want meet or feel. And you’re sending it — you’re basically lending a precedent for that, to be the case in the world at large, because if that’s how we interact with those that we trust the most, and that’s the message they’re sending, then why wouldn’t we translate that message to all of our other interactions?
Brynne: No. Definitely. Definitely. And that’s, that’s the huge, problematic thing that I guess I can’t figure out is, let’s say you have a child who is stripping, or let’s say that you have a child who, like, I had a friend who like their kid was eating rock salt, like up here, when it snows, we put rock salt on the ground to like, make things not slippery or whatever.
And so like, how do you handle situations like that? Just because the only thing I feel like a lot of parents are exposed to is ABA. So how would you go about healthily handling situations like that, where you don’t, you don’t want to control your child necessarily, but there are certain safety concerns or social norms where the parent might be lost on, on how to parent in that situation?
And see, that’s why certain things frustrate me so much about the way our healthcare system works and the way, because I feel like, you know, essentially, people are told, okay, well, you know, eclectic programs are things that are mixed and matched don’t work. You have to have a pure this or that. Because I think that there are elements of ABA that actually they’re not, they don’t belong only to ABA, but they’re more attributed to ADA, like a lot of the data keeping and record keeping and, um, you know, kind of like the assessments that are done or so forth, like there’s elements of that I think that are beneficial and helpful and would be beneficial and helpful in any field and, you know, in any type of practice. Um, and I think that’s why we’ve seen some of it, um, kind of become infiltrated into the school system. So I think that there are, um, you know, there’s a saying that even a broken clock is right twice a day, so nothing is all bad.
There are, elements — I think that most people who practice ABA are well-intentioned and I think that they do feel like they’re giving agency to their clients that they’re teaching them how to replace certain behaviors and behaviors with others or how to communicate more effectively.
And so I feel like there are elements of that that could be helpful or things that you could take from certain practices, you know, certain practices or ideas that you could take and modify on a way that’s more person centered. And that’s more affirming that can still be helpful because if you do have self-injurious behaviors or you do have some of these other things, and if, if these are methods that can work, that are not going to create lasting harm, that can help a person change in, you know, change some of these more drastic things.
Like if you have a stim where you’re harming yourself physically, that would be replaced with something that isn’t creating harm and it’s still giving you that sensation, or, you know, that it’s more appropriate in certain situations. You know, for example, stripping, it feels nice to be nude, but you can’t always be nude.
So what can you, what is a nice replacement. But the problem is that ABA quote unquote is supposed to be all in all the way. So there’s no, you know, there’s no Switzerland but we all know in theory that that’s not true. We know that a lot of the programs that are quote unquote business ABA, that people are, you know, have their children involved in, when you sit down and you talk to them, or when you talk to the behavioral technicians or what have you, you quickly learn that these programs are not actually — in theory, they might be pure ABA, but in practice, you see that they’re not, you see the naturalistic elements that have been built in.
You see the developmentally appropriate practices that have been kind of added in. You see how the parent has worked with the provider or whatever, to kind of, you know, change a few things. So you see that it’s, it’s a little bit of ABA with some developmental-based play therapy not official therapy with a little of this a little bit, a little bit, it’s kind of a hodgepodge.
It’s kind of like, I think I’d say most, most people’s if they got DNA results, you know, 23 and me they’re quote unquote monoracial, let’s say a person is mostly white. They’re probably X amount of Scottish and X amount of British and X amount of French. You know, it’s not all, it’s a mix of things that makes up, you know, we know heterogeneity, creates strength, um, you know, and that’s why we have biodiversity and the strength in, you know, of that, that has helped our living things survive, um, in a world that’s not easy to survive in.
And so I feel like the problem is. If the circumstance is ABA or nothing, then a lot of people will go with ABA, but is it more problematic to have ABA or nothing? Why couldn’t it be pick and choose some elements of this that are helpful and then do other things that are more aligned with disability justice and neurodiversity, that would be better suited for someone, you know, who has developmental disability, because there are a lot of things…ABA works because in a sense it’s kind of like bullying.
I mean, I hate to say bullying works. Um, or, you know, if you offer it’s very effective, there are a lot of things. Slavery was a very effective economic practice, very effective, but if we’re looking at transactional things, we’re looking at results that doesn’t make them right. That makes you know, it’s still think it’s still unethical, just because it can produce real results doesn’t mean that you should do it.
And so I think that that’s where people need to find some kind of balance in terms of certain things, it might be slower, may take longer. Um, you may not see the results. You don’t have the instant gratification that you might have in a program where someone is being, you know, trained, but that person might’ve held onto their sense of self.
A person may have a lot less anxiety. A person may be able to continue that behavior, um, over time, as opposed to it being something that fades away. You don’t have to live your life like you’re in a therapy setting at all times. Like you’re always on, like, you’re always wearing a mask. And I think that’s, um, you know, ultimately I think about a lot of the practices being a person of color and, um, having been raised in the south, I think about a lot of the practices that have been quote unquote effective, but problematic.
And one, a couple that I think of immediately like I think about… I’m going to single out, although I’m sure there’s applies to other communities as well, but I’m going to single out like the black community in the south. So growing up, you would not see a child of color, particularly black child in the store throwing a tantrum at Walmart or Target because they wanted a toy or a cookie.
You would see a white child doing that because the black parent is likely to take the child to the restroom or the car and spank them for behaving that way. And so there was an incentive not to behave the way. You absolutely want the toy. Just as much as your colleague wants a toy. Skin color doesn’t mean that you don’t want a toy or food or a treat, but you don’t want the consequences. And so, whereas a lot of our peers were not being, they were not having physical punishment, you know? And so therefore there was really nothing to be afraid of. You can kind of just go for yours, you know, if you want that toy throw the biggest tantrum on earth and maybe you’ll get it, you know, whereas the other child knows that the consequences are going to be steep and the toy’s not worth it, or other things such as the, you know, the stereotype of the strong black woman, you know, I think about are the strong or even not, you can take it away from race.
Women in general are supposed to be like this kind of like rock for the family. All knowing, you know, you see all of this, the know sitcoms where the dad quote unquote knows best, but it’s really the mom that’s kind of keeping the family afloat and is really the brains of the operation and just makes the father thinks that he is and so on.
And then you see how much that has impacted women’s mental health, how caregivers typically don’t care for themselves, the way that they should because of the fact that they are putting everyone else’s needs before their own. They’re not putting their own oxygen mask on. So yes, you’ve got this. The facade of strength and that, but that, but that’s exactly what it is a facade, because the external part might be strong, but internally you’re, you know, you’re, you’re broken down and destroyed because you haven’t built yourself up.
And so that’s what I think about, like, when I think about ABA, certain things that are, are going to have results, because it’s, if you think about animal training, uh, again, um, if the dog that you were very harsh with or what have you is going to be the one that’s better behaved quote, unquote, or train than the one that, um, where maybe, you know, things are inconsistent.
So deprivation gets results. I mean, Stockholm syndrome is real, you know, people do want to please their oppressors. And so if that means to behave a certain way, move a certain way, speak a certain way. If that will get you love, if that will get you smiles and that will mean that people won’t look at you strangely then who cares if you know, you’re developing internal trauma and anxiety over it? You don’t matter. They’re comfortable. And that’s, you know, and that’s what everyone needs to be comfortable with what they see, it doesn’t matter what we feel on the inside or what you wish to do on the inside.
As long as the outside looks pretty, that’s the message that is often sent. And that frightens me because, because no one’s denying that in many, in many ways, ABA can be effective, but is it worth the price?
Brynne: No, for sure. For sure.
Nondescript voice: (chime) And now a word from our sponsor.
Brynne: All right, everyone. Imagine this: it’s 2:00 AM and you are wide awake. You’re worried your child is going to wake up and wander the house or heaven forbid outside the house. If you dare to nod off, you never get a full night’s rest and it is not okay. But you’re not alone.
Some disabled children do struggle to get consistent sleep. The reason for this as an ongoing topic of research in the medical community. But what is clear is that humans need sleep. Your child needs sleep. Mom needs sleep. And if you aren’t getting it, everything else in life gets harder. Enter the Safety Sleeper by Abram’s Nation.
The Safety Sleeper is an enclosed and portable sleeping system. This durable medical equipment was created by a mom who has been there. So it’s stylish, customizable, and completely portable allowing your family to sleep safely whether you’re at home or traveling. You can buy the safety sleeper direct through Medicaid or through your private health insurer.
Plus, our friends at Safety Sleeper have put together a free trial giveaway exclusively for Mom Autism Money listeners. Learn more at safetysleeper.com/MAM. That’s short for Mom Autism Money. Again that’s safetysleeper.com/MAM
Brynne: I’m sorry, I don’t want to make the whole thing about ABA. I do have one more question for you though, just because I don’t think that a lot of our parents, some of them have been exposed and have specifically asked about this, like, how do I do this right? But then others, I probably don’t have exposure to this point of view.
So I guess my final question on the ABA is how is a neurotypical parent who maybe doesn’t have a background in education, maybe doesn’t have exposure to the wider autistic culture. How do you identify some of those behaviors that like…nobody’s coming in your house and slapping your kid in the face anymore.
Like we all get that that’s not happening, right. Or it shouldn’t be please. I hope it’s not happening. But what are, what are some of those other strategies that could end up being counterproductive or end up causing that internalized trauma? Withholding items it sounds like maybe one of them, I don’t know what rewards systems, like, I don’t know how those fit in.
Are there any specific things that parents should be looking out for that if it’s happening in their house they should make it stop?
Morenike: I’m really glad she brought that up because I agree. It’s like, and I think that’s why there’s sometimes, um, you know, strife often with people who, with autistic adults who are trying to provide an alternative view or a counter narrative to ABA, and then parents are coming on, they’re saying you’re an abuser.
You’re letting your child be abused. And the parent is thinking my child jumps for joy when they see, you know, Ms. Stephanie or, you know, Mr. Troy or, you know, or, or Miss Taylor. Um, my child is happy, you know, enjoys this is having fun, is able to ask for things. What do you mean abusive? I’m watching through a camera, I’m checking, you know, that’s not happening to my kid, you know?
And so it’s like a language I think doesn’t match. And so I think, and I, I agree that, you know, if a person who’s neurotypical and some of the things that are hard for us to do or not hard for others, you know, the parent may not recognize that, you know what it’s doing to the child. It isn’t that they don’t care.
You absolutely care, but it just doesn’t, you know, manifest in the same way. They, I can, you know, I can sit in a particular room. And if I’m in there too long, I could be, you know, a migraine can form and pierce can form from the scent of maybe the cleaning product that was used at everyone else can’t even smell.
So it’s not like they’re, they’re gaslighting me. They just, it isn’t impacting them that way. And then you add the fact that we don’t always a lot of what we don’t necessarily display our emotions in the traditional way. So whereas someone else might show distress by a frown or by this or that we may not necessarily do that.
So how can one read it? Um, and so, but, but this is what I want to encourage parents. You might be neurotypical. You might not have your child’s neurology, or you may not even be neurotypical maybe your neuro divergent because a lot of parents are, um, even if you aren’t necessarily autistic, you know, we see that, that, you know, neurodivergence runs in families, but, um, you might not have the same….
Your, your neurology may differ from your child. You may not understand the neurology, but that’s your baby. You know, your kid you’ve been there and you may not understand everything that they do or say, but I think a lot of parents are ga lit into some, you know, just like autistic people are gas lit and, and, and told that we’re being paranoid.
This doesn’t really hurt. This doesn’t really make noise. It doesn’t really smell this way, even if it really does to us. I think parents feel a sense of, of discomfort with certain practices, but they’re told that they must be all in, if they’re a real parent, you need to trust you need to do it all the way. Um, and I think that that, that little, that inner parent voice that people ignore, I don’t think they should always ignore it because I think there are certain things that no matter what neurology your child has, that it should, should be the, that any child should be entitled to.
And it actually, if it’s okay, I actually want to read something that I wrote, um, in January 2015.
Brynne: We would love that, yeah.
Morenike: Um, yeah, thank you. Because it kind of relates to this and it’s basically, and I called it “Full-Time Jobs for Preschool Children because of Autism.” And, um, I think it, you know, it, it relates to some of these feelings.
Um, and so I’m just going to read it. If you don’t mind.
Long before the day we received a formal autism diagnosis, I already knew my daughter was autistic. I hadn’t picked it up at first. Not because the signs weren’t there because they were, but because I didn’t see anything problematic in those signs. She was a lot like the way I was as a child.
And also in some ways, similar to me, even in adulthood. For the most part, I understood her. And even the areas that I didn’t understand didn’t alarm me. I figured she had her reasons for some of her behavior. And if she was content, I should be, too. I know this is not typical of everyone. This is simply my experience.
It was only when I enrolled her at two years old in a part-time mother’s day out program that the differences between my child and others, her age were pointed out to me by the program staff. Not understanding what they were implying, I decided to come on a few different occasions and observe a class through the window to try to understand.
In doing so, for the first time I saw my daughter through their eyes and it was glaringly obvious at that moment that she was indeed different. I went home and took to the internet to try to figure things out. It didn’t take very long to determine what I saw: autism. I read thoroughly through the DSM-IV and DSM-V as well as a host of other articles.
Then I visited several other websites, forums, and blogs. For several weeks, I spent nearly every spare moment I had online often awake until three or four in the morning. Everything that I read confirmed her suspected autism diagnosis more and more. On a visit to the pediatrician, I shared my thoughts and she administered the M chat.
The results were no surprise. Fast-forward many different specialists, assessments and visits later, we had an autism diagnosis. I was glad to have confirmation of what I already knew, and I was fortunate enough to live in a major city where I felt my daughter could have proper support and services. Armed with literature, phone numbers, referrals, and URLs to visit I set about trying to determine what my daughter might need and how to get her plugged in. One theme kept coming up over and over and over. And that was quote, early intervention is key. You will need a minimum of 40 hours per week of behavior therapy in order to obtain the maximum results. You must start now before she is three, and you need to implement these at home as well.
Unquote. I read that and was told that more times than I could count. When I questioned this logic, I was told that there was extensive research to support this. So I looked that up, too. I reviewed numerous studies and sub studies, examed literature reviews, scoping reviews, meta reviews, and meta analyses. I read personal accounts, contacted clinics reviewed at length, the standards on the BACB, which is the body responsible for the accreditation of ABA programs and personnel.
I watched videos, read blogs and looked at even more research. And I still wasn’t feeling it. BC before children, I had taken some undergraduate level psychology courses in college. I took more of them than what was required of my degree because I found the courses interesting. And I utilized the extra classes as electives. Aside from the usual intro to psychology survey classes, I also took child psychology, developmental psychology over the lifespan, social psychology, women’s psychology, et cetera. I do not profess that taking a handful of undergraduate psychology classes makes me any sort of expert in psychology. However, it seemed to me, that this 40 hour a week, ABA recommendation was contrary to nearly everything that I had learned about development and the young child. 40 hours a week is the equivalent of a full-time job.
There is a plethora of literature about the way children learn this research talks about their need for spontaneity, variety, and learning experiences. It also emphasizes their need to be nurtured, to move, to play, have supportive relationships, to be able to build trust, to be able to make choices, make mistakes, develop healthy attachments.
Did all of this no longer apply simply because my daughter was disabled? Before her diagnosis, I had worked part-time in order to spend more time with my children. I was very privileged that I had an employer who allowed me to work from home on some days and a few days a week, bring my daughter to work with me.
The mother’s day out program, which my daughter had only recently started attending was only 10 to 12 hours per week. At this time, my child was not even in 40 hours per week of childcare. Yet now she was supposed to be in 40 hours a week of therapy because we now had a name for the condition that she had always had?
Please note, I realized that everyone was not fortunate enough to make the choices that I have had. I was raised by a wonderful mother who worked full-time outside the home. This is no indictment of parents whose children are in daycare full time, but I’m just observing that on top of the recommended 40 hours of ABA, we were told that we needed to reinforce the strategies used in the therapies with her at home.
Essentially whether with providers or with family, our daughter would be in therapy all day, every day. Plus, as my daughter had sensory fine motor differences, speech delay, and other things, in addition to ABA therapy, she also needed speech therapy and occupational therapy, as well. The whole thing was mind boggling. Was my daughter’s life going to become nothing but therapy after therapy from morning to night? When would she have time to just breathe? When would she have time to play? When could she be alone and have downtime? Now that we had a name for her diagnosis, was she so broken that she didn’t deserve a childhood anymore? I am not anti therapy. Since the age of six months, my daughter had already been in therapy a few times a week for some other health issues.
But what was being proposed as a result of this diagnosis seemed far beyond that. Then there is the cost of these therapies, which was pretty high. It seemed that many families had depleted their savings and refinanced their homes in order to come up with the money to pay for these services. There was huge variation from one provider to the next, with regards to having the fees paid for by insurance and out of pocket.
Finally, I had to consider the therapy itself. Technically, according to the studies it worked, but the areas that were measured by most of the studies were not the areas that were of greatest interest to me as a mom. I was less concerned with the fact that there were results in terms of decreasing noticeable stereotypy, increasing eye contact, enrollment in general education, et cetera.
I was more concerned about shaping her into a healthy whole and decent person. Much of a therapy seemed repetitive, dry, rigid, impersonal and domineering. It seemed as if it was designed to break my child’s will and obliterate her natural way of moving, engaging, and communicating. Instead of teaching her to perform in a more acceptable way.
All of this was done under the guise of helping her wrapped up and convincing buzzwords, such as evidence-based, indistinguishable, optimal outcome, function, reversal normalization. I was not convinced. I am a daughter of African immigrants who lived part of their lives under colonial rule and part of their lives under independence. There is a frightening parallel between the government sanctioned Anglicizing and cultural genocide that my parents observed and described to me and the philosophy that supports such widespread endorsement of 40 hours of traditional ABA as the go-to therapy for all autistic people.
Just like many BCBAs today, during the colonial era, there were Europeans who sincerely believed that they were helping by getting rid of the barbaric customs and savage practices of the natives. They were helping the countries that they took over become more civilized. They saw little to no value in the people’s original way of life, and they felt an urgent need to teach them the right way to behave in order to make their lives better.
No, thanks. We chose a different way for our daughter. We chose a balance, which allowed her to retain her autonomy and her sense of self while also helping to guide her and teach her new skills. We found a way to help her begin to learn to navigate a world where there were people who were very different from her, but doing so without losing herself in the process. We chose an approach that though slower surrounded her with people who were loving and prioritized her needs while also incorporating healthy and age appropriate boundaries.
We bucked the system and we opted not to subject her to the equivalent of a full-time job, simply for the crime of being autistic.
Brynne: I have chills. Thank you for sharing that. I, uh, I had a similar, similar feeling and experience in those younger years and I had never drawn the throughlines to colonialism, but wow. Thank you.
Morenike: Yes. And I just feel like parents, you know, parents, it’s so hard to be a parent, no matter what your neurology is, no matter what your child’s neurology is. It’s the toughest job. I mean, you know, like they say the toughest job you’ll ever love, and it’s true. You love it. But you, there is no manual. You are building the plane as you fly. You are learning on the job.
You’re going to make mistakes. But I feel like most parents, they don’t know, parents don’t know everything. We all make mistakes, but they do care. They do try, but they are told I got to suppress this feeling. This doesn’t feel right. I don’t know if I should do this, but, but I’ve got to do what I got to do for my kid.
And this is, this person says this, and I feel like that parents err in doing that because no, you may not have the neurology of your child. No, you might not have the particular educational or professional background of this person, but this doesn’t, you don’t have to, you know, drink the Kool-Aid.
You don’t have to accept that there’s just this one way. You have the right. You know, you may not understand everything that your child does, but you, you usually can tell when they’re in distress or when they’re happy or when they’re regressing. And just because you see progress doesn’t mean that progress is worth the admission price.
And so I just want to empower parents. Like you might, you don’t have to, you’re not the expert on your child’s neurology. That’s why Autistic adults and parents should work together. The autistic adult is the expert on being an autistic child. Maybe not being your child, but being an autistic child. you are the expert on your child.
Together, the two of you can bridge the gap. They don’t know your kid like you do. And you don’t know your child’s neurology like they do. By working together, you can find a way. Um, and I understand that some people are in circumstances where they can’t. You know, I don’t demonize parents. I have my, my two Autistic children.
I had one that did do some ABA. And when did that, did not, I do still see that there are differences in the two of them to this day. Um, in terms of how, you know, anxiety ridden and how much of a perfectionist she is and how more laid back he is like, I, I regret every day, but I, it wasn’t, she smiled. She seemed to enjoy going there.
She seemed to have fun. The people were nice. Um, I observed what was going on, you know, and yet I still feel like it’s almost kind of like a situation where you’re trying to make a bad situation palatable, like, okay, here’s some, you know, trans fats and here’s some corn syrup and here’s some whatever. Can we throw in some Sage and throw in some broccoli or cauliflower or can we improve it, but it’s already, but the base that you’re starting with is unhealthy.
So you can make it better, but you, you, you weren’t going to change its true composition. And so that’s what I feel like there are things that, you know, skills or things that she can do that her, her sibling can not do quote unquote skills that she has it, that he doesn’t have. She can quote unquote pass a lot better than he can.
And yet there’s a lot on the inside that she struggles with to this day that he does not. And I know that a lot of that, the seeds to all of that go back to doubting herself from that ABA. And I’m an, and I’m an involved mom who I would sit and watch ask questions, be, you know, look at her, you know, results and all of these types of things.
And I still feel like I erred, but I understand that sometimes you don’t really have a whole lot of resources. Um, And sometimes you have to make concessions that are unpleasant and that are, um, you know, that you will hopefully, you know, be able to make a different choice at a different point in your life.
It’s never too late to start over. It’s never too late to make changes. You can pull a child out of a therapy and you can find other options. You can try, you know, there are some other resources, there are other mechanisms. There are, you know, there are things to try, um, that people can try. And I think our kids are worth it, you know, and you know, we, you know, trial and error, we often do it for a recipe.
If someone’s kind of figuring out the best way to make something, you’ll try it this way. And then maybe the next time you make it, you’ll try it this way and you’ll play along with it. You won’t just go with the one way that you learned initially, because you might find that the, the ways you learn later are better or maybe the ways later aren’t better, and you’ll return to your original.
But I think our kids are worth it. They’re not Guinea pigs, but they’re worth it for us to try to find something that has the best possible match for what we have available for our child’s psyche, for where they are now. And for our families.
Brynne: Definitely. Definitely. And so, I feel like we’ve covered ABA and how like that can, a lot of parents may unintentionally be teaching their children to violate or not respect their own boundaries through that therapy.
So that’s like a big no-no, um, looking at looking at some other aspects of this, one thing I love everything you’ve written, but Sincerely Your Autistic Child was a book that you both contributed to and edited. And one thing that I noticed that came up there again, and again, it just broke my heart was just exposure to abuse. Like physical abuse, sexual abuse. So I’m wondering, we know, we know now that we have to be very careful and evaluate what’s happening with behavioral therapy because of ABA, are there any proactive things that we can do, I guess specifically, because this theme of physical and sexual abuse came up so often, what things can we actively be doing or teaching to kind of help our children learn how to draw those boundaries for themselves?
Again, remembering that like abuse is never the fault of the victim here, right? Like if your kid’s abused, it’s not their fault, but there are certain boundaries that we can draw in life that can help us reduce the odds of becoming victims, I guess.
Morenike: And I think that that’s something that parents can and should do.
So I think about how a lot of things that people don’t share, because it’s kind of like, so I think. Being autistic, you know, there’s like this, these unwritten rules to life that everybody else knows that you don’t know. And you kind of have to figure out what those unwritten rules are. So for example, you know, like when people say, how are you, they don’t want a real answer.
They want you to lie. You say fine, it’s a script. So you start learning. A lot of things in life are just scripts. They’re not reality. It’s like our thing. Um, because that’s what, you know, when someone, you know, they don’t really want to know, you know, if they ask certain questions, they really don’t want a true answer.
Some people in your life might, you know, but a lot of people don’t. So you kind of have to learn these little rules and games and try to remember them all. And they differ from situation to situation. And I think that one way that parents can empower their child is have them own that no. Even though it might be annoying.
Cause maybe they’re, you’re the one they’re gonna say no to all the time. Like, you know, there’s, you are a parent, there are certain times when you’re going to have to, like you think about anything else. Like if there is a, um, you know, a tie, if there’s a team, you know, or what have you, if there’s a vote and someone has to break the tie or someone has to, you know, um, so sometimes someone will have to kind of assume authority and make a decision if things are, if there’s a stalemate, but ultimately, empower your child to say no, give them choices. Even if the choices seem ridiculous, give them a choice between this shoe and that shoe, this cutting their sandwich sideways, or, or, you know, or diagonally. This volume or that volume, this, you know, putting the car seat, putting your arms in the car seat first, or your legs in like, make sure that they have choices all the time.
So that way they are, they get a chance to say no a lot. And they, you know, they might say, yes, I mean, you know, your kids oftentimes the answer you might already know. So I think what a lot of us would do is we know our child likes something. We’re not going to we’ll just go ahead and defer to what they like.
We know they always like to sit on the left side and we’re just gonna take them to the left side. And we can but while taking them to the left side we can be like, you’d like to be on the left side, right? Or, you know, do you want to be on the left side of the right side so they can have choices. So even though you’re deferring to what you know is their preference, they have a chance to say no.
And that they can say no about things, even if you don’t want them to always say no. My son has a lot of sensory issues when it comes to hair combing. Um, and so he knows that at a certain point, like I can comb for a few seconds. And then after a certain point, I have to stop if he tells me to. It may not get, his hair may not still not look right, because maybe I need a few more seconds, but he told me, no. There are many times as a mother, I’m just cringing thinking, oh my gosh, I’m sending my child to school ashy, hair half combed, whatever, because that’s what he wanted.
But he, but it let him know that he could have some choices, even if I didn’t necessarily always like or respect the choices. And this has to start with the small things. Um, sometimes you have to let them know that their no can’t stay like, for example, with immunizations, you know, I’ve had to tell my child, I know you don’t like these and I’ve explained to them, you know, like why they need them.
I know you don’t want it. I know, but we have to. And I’m really sorry if there was another way, you know, we wouldn’t, you know, so sometimes they know that there are no doesn’t stand, but if there isn’t, if there, if there is no valid reason for their no to be overruled for a lot of reasons, at the time, their no stands because I think that children should be able to be free to talk to us.
Even though sometimes the info dumping might get old. It’s like, how much more are you going to tell me about this Pokemon or whatever? But they need to be free to talk to us because you’re not always going to see the signs. I know that I didn’t, you know, like when I read the quote unquote signs of someone who was suicidal or depressed, I didn’t exhibit those signs.
I wasn’t giving my stuff away. I wasn’t crying. I was pasting on a smile. I was making those straight A’s. I was still grinding and pushing because I didn’t want to worry that they had enough things to worry about it. I didn’t want to worry them. And there’s sometimes some of the stuff just doesn’t make sense, like to do like, especially if it’s spontaneous, it’s not planned out.
You’re not going to think to do thing a or thing B um, what’s if your situation sucks, what’s crying, going to do. I mean, I know, I guess it’s, it can be soothing, but it’s not going to change your circumstances. So you might think, well, what’s the point? Why don’t you spend the energy? You know? And so I think that having your child be open to talking to you and to asking you questions and be able to ask you a lot of questions, even questions that seem invasive being, making sure that they are able to say no, being very, very explicit about a lot of things. Like I’m like with my children, when we talked about there were, it was not like the little conversation I had an elementary school where they talked about anything that’s underneath your bathing suit no one should touch. Well, my logical autistic concrete brain was thinking your shoulders are under your bathing suit. Your stomach you know, a whole lot of your waist. There’s a whole lot of body parts under that bathing suit so nobody can touch any of that stuff? So your mom can help you scrub your back?
Like, no, that’s not the way to work. I grabbed, I went on the internet and I grabbed dolls and I’m talking about. Monm’s pubis is an areolas and I’m talking about, you know, the difference between the urethra and penis and scrotum. I’m, I’m giving these things names, I’m showing where they are and showing them with imagery.
I’m explaining these different things. I’m breaking it down. I’m trying to think of every possibility. And, um, and then I’m talking about things that people say and do, and about how. How it’s not going to be, you know, some weirdo jumping out in a trench coat, you know, it’s going to be people who are familiar with you or whom you trust or who you like, and it’s going to start small and how, you know, like about how, you know, so I basically start them, you know, basically trying to like, get them to understand.
It’s very hard to recognize the signs of grooming when you’re Autistic. And so trying to let them see like those little bitty things, when people start crossing your boundaries in little ways. First of all, it’s not respectful of you and you deserve, you know, but secondly, that could be the start of the slippery slope to abuse.
So we often may not catch it, but can we teach our children to catch it as best as possible? Like I learned growing up that before I would get sick before I had a sore throat or congested, I would have like an itchy feeling, you know, like in my throat it didn’t hurt. It was just weird, uncomfortable feeling.
And so I started to recognize that every single time I got sick before I got sick the day or two before, I had the itchy feeling. Then I had a little soreness, then it progressed and so on. And I started to learn, oh, I think this might mean I’m about to come down with something. I would tell my mother and she could kind of preemptively address things.
We are so great at recognizing patterns, autistic people. And so if we can kind of teach our kids, it’s very hard to read other people and we trust other people and other people lie and they changed the rules. So it’s very hard, but if we can trust them, once they pick up on something that seems amiss. Or if they can show people that I’m not the one, like if, you know, perpetrators manipulators, they, they select their pray intentionally. And so if you can do something to make sure that your child is less likely to be the one that they’re going to pick out, because it’s not worth the risk because they don’t want to get caught.
They want to, they want a victim that they can do this to, and it can move on and do it to another. And so on, they are about survival. They’re very shrewd about, you know, they’re not just picking whomever’s in their grasp. And so what, in what ways can you surround your child with their own weaponry to where it’ll be almost like a shot across the bow, so to speak or warning sign that someone should back off?
Not this kid.
Brynne: No, definitely. And I think that maybe neuro-typical, or neurodivergent, I feel like a lot of women have been through that situation, but definitely not every woman. So if you have not been through that situation, maybe familiarizing yourself with those patterns, it sounds like would be a good thing to do so that you can then teach them to your child.
That’s a really good point about the pattern recognition, and that being an effective way to teach.
Morenike: I remember once when my son was very little and so I would, you know, so I’ve talked to him about these things and I revisit the topics. And so I remember one day, you know, so I would give him scenarios, you know, and I would say I would use grandma and grandpas, brothers.
So I remember one day when I was talking about, so if mommy does this to you and does this and the other, is it wrong? And he paused and he was quiet for a minute. And then he said, no, it’s not wrong. And my heart just broke. And I said, no, honey, it is wrong because in his mind, he’s thinking, but mommy doesn’t do bad stuff.
You know, this, this doesn’t even make sense to me this whole situation. But I said, no, baby, this is, if mommy did that, it would mean something is wrong with mommy and mommy needs help. It is, it’s still wrong. And you need to, you know, tell someone that you can trust, not Mommy. Cause Mommy has problems, um, that this is happening, so mommy can go get help and that you can be safe, even if mommy’s doing it, it’s not right.
You know? So like I had to try to divorce the person and their character from the act like, so we had gotten it down pat, but he knew that no one should touch you here. No one should do this. So when I ran through all the different people, siblings, grandparents, favorite teacher, everybody was a no, no, no.
But when I got to me I’m mommy. So he said he didn’t get it. And, and so I said, no, I’m still, it’s still not right for me. And like, even when I, you know, help with hygiene. I still would say, okay, well, let me help you. You know, like I narrate through the day like, oh, okay, let me wipe this. Or let’s clean this.
I don’t just grab for it. Or I say, okay, let me clean you here. And then I do it. Like I give them a heads up. Um, just because they have a right to know that, okay, if I’m touching you here, this is why, and there’s no other valid reason to do so. And there are only select people who should have any reason to look at these areas or touch these areas.
So even if someone tries to use that as an excuse, it’s not person, X’s job to examine this body part of that body part, you, there’s only certain people who should have jurisdiction over that. And so I remember that broke my heart. And so I had to talk to him about that. And he was little, but still, cause I was like, no, no, no, you gotta get this.
I, you know, anybody is suspect even mommy, even if Christ comes down here and does that it’s wrong. And so, and so what you got to role-play because I would have never known that was a you know, I guess a hinge in, in his armor if, if I hadn’t discussed it. So I brought the things up and then we even had made up a little song about, um, you know, like some of the stuff when they were littler.
And we had some scripts about all these things and what to say, if they say they’re going to kill your mom or runaway, or they’re like, we hit somebody. I gave them things to say, and we chose which ones they wanted, but even we had a little song, you know, nobody can touch my, you know, blah, blah, blah, nobody can touch my…
And then we met, we had a little, it was almost like a cheer, like I’d say one part and they’d shout out the body part and they’d make a motion. And then I say, nobody would touch my, and they’d do the other one. And then I’d say, you know, the last part, and then I’d say, Um, I say, I’m going to keep my and we’d all say body safe! And we jump up.
I’m like we do it with everything else. If you think about the ABCs are basically twinkle, twinkle little star. If you think about all of the different mnemonic devices that we use for learning, uh, for driving, they tell you to put your hand in at 10 o’clock and two o’clock, all these different things in life, adults and children, we learn, um, we utilize these tools to learn, to remember things righty, tighty, lefty, loosey, whatever.
Why not for these things too? These are some of the most important lessons we can teach our children. Hopefully they’ll never ever have to use these lessons, but they certainly should know this language. They should know these things. If they can grow up and be. What right now is the unicorn, which is autistic person who hasn’t been taking advantage of harmed or abused in that way.
I’d be so grateful. I’d be so happy for there for that, to be the case where it’s not the norm. Where every single autistic adult that I’ve ever met, whether they were diagnosed in childhood or later in life has been sexually assaulted or physically abused or emotionally manipulated or sexually harassed at work.
I it’s literally 100% of the people that I’ve met. Um, if it hasn’t happened to them, the attempt has been made. And that’s a very sobering and terrible statistic that I’d love to see change.
Brynne: Yeah, absolutely. That is really sad.
But also that’s why we’re here today. You know, it’s also really important that we learn how to prepare our children for reality, even if reality is very sad.
Morenike: And then there’s some beautiful parts of reality too. Like I get such sometimes I, some parents, just the things that I read that they say songs like brings tears to my eyes. When, you know, like, I think about some of the remarks that people will make about how they felt this way. And then they started to see their child this way or how they’re they’re they’re, you know, they’re there for their kid.
They’re fighting for their kid and I’m just thinking, you have no idea how far that, those things that you’re doing that to that person is just them being a mom or being a dad or being a parent. You have no idea how far that stuff goes, because then for me, the outside world was uncomfortable, but home was Haven.
At home, they knew that I had to sit here, my food couldn’t touch. They didn’t really get why, but they knew it, and they accommodated it and I was not a weirdo. And I could play that song over and over and I could watch this show over and over. They may make a good natured joke about it, but they allowed me to be me.
Those things weren’t big things. They weren’t, um, they didn’t, you know, make quote unquote major and minor things. You know, there were certain times, yes. That they might have to break in, you know, or, or change my routine or whatever for, for valid reasons, for the sake of the family. But ultimately they let me be me. Those things, weren’t big deals, you know, and we kind of saw them as what I call my husband and I call red car blue car, you know, some, some decisions that a person makes aren’t really…
It’s just their personal preference. They need a car it’s safe. If you look up the car, the model, the year, the type, and you decide that, okay, this is the type of car that we’re going to purchase because it’s good on gas. It’s got these safety mechanisms and blah, blah, blah. Ultimately, you don’t care if it’s red or blue or black, the color, that’s just, that’s just coloring.
So whatever the person wants it’s really that’s just by choice, you know? And so a lot of the things that people control, I think they don’t have to like, so your kids stimming or flapping or this or whatever. So what I mean, like it would make it red car, blue car. When it’s something that could be, you know, a danger or a problem, or what have you then intervene.
But if the kid is just a little weird, let them be weird. Especially at home. Maybe they might know they have to suppress that stuff some in public, but they’re a lot more likely to be able to, if they don’t have to suppress it at home too, if they know when they get home they can, you know, if you think about the people, they might wear high heels and make up to work, but they know when they get home, they can kick off those shoes and they can wipe the makeup off and they can just put on some sweats and be comfy because it’s home.
So make home a home, let doctors know that child know that you, their parent, you’re a home. Yeah, absolutely. Absolutely. And now
Brynne: Yeah, absolutely. Absolutely.
Nondescript voice: (chime) And now, a word from our sponsor.
Brynne: Do you struggle with sleep at night because your little one won’t or can’t sleep? Do you worry your child is unsafe during the night because they aren’t sleeping?
Have you ever found your child wandering in the middle of the night when you thought they were safe in bed? If you answered yes to any of these, we’d like to introduce you to the Safety Sleeper by Abram’s Nation. Created by a mom of a young child on the spectrum, the Safety Sleeper is an enclosed bed system designed to keep your loved ones safe at night.
The Safety Sleeper zips around a standard mattress. Some people say it looks like a tent: A metal frame, padding, canvas fabric, and zippers make it sturdy and comfortable. You can zip your child into bed and they are safe, secure, and prevented from eloping. Because it was created by a mom, the Safety Sleeper is not only durable medical equipment, but it’s also stylish, customizable, and completely portable.
Our friends at Abram’s Nation want to help you get that rested sleep you’ve been missing. They’re also running an exclusive giveaway just for Mom Autism Money listeners, allowing you to try the Safety Sleeper out for free. To learn more, visit safetysleeper.com/MAM. That’s short for Mom Autism Money.
Again, that’s safetysleeper.com/MAM
Brynne: And I guess, one final question that we had about boundaries today was kind of veering off in a different direction, but more of our home base here at Mom Autism Money. We had some listener questions come in regarding setting financial boundaries. And so some of these parents are particularly concerned that like, as they age, especially, and they’re not around to like worth through their situation…
Morenike: …yeah, that they’ll spend all their money on buying something that’s from their…
Yeah. That. I think that’s a legitimate concern. Like I really feel like all people. So I’m a college professor and I work in developmental education as well as general education. And so there are a lot of things that sometimes I feel that, um, are like provisions that we have in place for our students who get accommodations.
And, you know, we call them accommodations at learning access. It used to be called disability services. But I feel like those are things that could be beneficial for any student. And sometimes I’m thinking why aren’t all of the students taking this course about, you know, how to learn? Or why aren’t all of the students, you know, assigned a success coach? Why you wait until someone’s GPA drops, or until a person asks for help, or if they’re enrolled in, you know, having a certain documented disability to provide that? you know, I thought about, I think about there’s so much research about first-year seminar type courses and those orientation, extended orientation type courses and cohorts, and how that helps with retention and persistence and growth. And I think that everybody can benefit from financial literacy. So if it’s something that you’ve already been taught or you already have a handle on, you can reinforce it.
And if something you don’t know, it’s important to know. We don’t tell people to stop doing CPR first aid certification, just because they’ve gotten it. Um, I, you know, think about the years, uh, you know, when we were, you know, initially adoptive and foster parents, I remember there was a period where I could have started to teach the freaking course, but it didn’t matter.
You still have to take it, you refresh. And sometimes there are new things that you learn and sometimes there’s not, you’re just reinforcing what you know, and that’s great. I mean, you’re getting better at it, but I think that there’s, there’s websites and there’s tools and there are things I really feel like a lot of these things, if there’s a way to get your child to do them or be interested in, to do them together. There’s like little quizzes and games. Things that you can do online and things that you can teach them. But I think you have to be a little flexible because I think you have to understand that sometimes we can be spontaneous or sometimes our values sometimes a person may rather they would rather spend it’s really, really important for them to go to this, um, whatever event. And they’re going to have to cosplay and they’re gonna have to pay for this and they will, they will gladly eat ramen noodles instead of, you know, like cut into the grocery budget for that month for, you know, sometimes you’d have to make those concessions.
Like we make them differently than the way a non-autistic people make them. So most people have a standard budget and they very, very little will make them, um, deviate from that. And for us, sometimes it’s not the case. Sometimes some of these things that we spend money on are for our mental health, they’re proactive.
It might be even beneficial for the person to pay. So I can binge on this show, you know, the season of the show or order a whole bunch of these action figures or whatever, it may seem like excessive, but it’s a sure. You know, but you don’t know what you’re investing in in terms of the self-regulation and the calm and the functionality that those things are going to afford to that individual.
But I think people do need to be taught to save. I think that, and I think a lot of times, you know, use some of our characteristics, you know, against us when I like did this really for us. Show us the statistics of homelessness and people who are one paycheck away from this and how much this costs and how much money people should have savings.
Like we, we may not like it, but we, we can kind of reason with stuff that makes sense. And so a person may not want to save and they may want to do this, then they want to do that. But when you show them, if this happens this, a lot of times we like to have provisions and we’d like to have, um, fail safes and so forth.
And that might be a way to do it. Or you can have certain things done automatically. Like for me, I don’t go out carrying cash because I’m going to spend it all. You know what I mean? I’m less likely to pull out a debit card and swipe it because I think about it, but cash, I’ve got some cash, yeah, I’ll buy this, I’ll buy this random thing you don’t need to buy, and so I have certain things that automatically come out. So as much as you can automate, like in terms of savings and bill pay, I have a lot of things automated. So it’s almost kind of out of sight out of mind because it’s going to hurt me to think, oh, I want to, I’m putting this much money away. And then I can’t see for what I could buy something with that.
So, but if it’s, if you already kind of have it done, then you are still being active, proactive and doing it, but you’re not putting yourself in a situation where you have to manually do it each time and face that temptation. Sometimes that can be very hard for us. Um, I think that money management and having, you know, money set aside for a rating and having those skills and having support and having help and knowing that there’s tools that you can use to help check your credit and keep up with things and give you suggestions.
All of those things are worthwhile, teaching us those skills and supporting us and having something set aside like. One of my children takes a particular medication that is necessary. Like, you know, they won’t live without this medication. So there was one time that after, we had some inclement weather, but then I got freaked out about not being able to get to the meds.
So I took about a week and a half to work and I put it at my brother’s home and I was like, this is, you know, it almost like having it in the cloud somewhere in case the lights are cut off or there’s a flood or a hurricane, I know I can get to you and I can get this med. And she will, you know, we will have enough to tie us over.
And I think sometimes having something financial like that, something put away that we can’t touch because it’s not even just about being a child. You can be an adult and sometimes still have impulse issues or whatever, something set aside that you can’t touch in case for emergency, but also having built in like, you know, like a lot of the, Guardianship alternatives that people have where they’re supported decision making.
Cause sometimes you do need someone to talk you through the way things cost or help you not just buy the first thing instead of, you know, search for a better deal or not fall for people’s tricks and invest all your money in a pyramid scheme or whatever. So I think that this is, these are some of the ways that.
Um, if we could find a better way, like sometimes people have guardianship and that means they can handle everything that we don’t handle anything. And we’re just kind of left, you know, almost like infantilized when it comes to the money aspect or there’s the way the world has it, where you’re all completely on your own.
You should be old enough to know how to do this, know how to do this, know how to do this? No, you don’t like neuro-typical autistic, whatever. Most people struggle with these things. That’s why, you know, we have the student loan debt that we have and the, you know, creditsituations and the, you know, issues that we had some years ago with foreclosures.
Those weren’t autistic people are not the majority of the population. This was happening to the typical public. So everyone can benefit from support in these areas. And so I think that like, there’s a website called allywalletwise.com that has some like general information about, um, how to spend, you know, like about money and, you know, money management and stuff like that.
That I, I recommend that if people can check it out, um, that they can, there’s another one called cashcourse.org. You can enroll for free and take it and do it. It’s got like a bunch of guides and it’s, you know, um, I actually have all of my students do it as an assignment, but I think it’s beneficial.
Brynne: Is that from NEFE? That is a great course!
Morenike: Yes. Yes. It is awesome. Awesome. And then there’s other things like, you know, so other rear other resources, like Smart About Money and there’s just other things that I just recommend that people, it may seem like a drag. It really isn’t, it’s actually kind of fun, like to learn about the, you know, I’ve started to learn so many tricks about, oh, well this counts for this, or this does this.
Or, you know, it’s almost like a, you know, a game like a mind teaser when you start to understand how these things work. And so I just recommend that people it’s never too early to start talking about this stuff with your kids, even if it’s something simple as a little allowance, and if you have rules, okay, you get $10 a week, but you must put away a dollar for this, and then you know, so take some money and pay yourself.
You can spend this much. And then you put away this for this or this, for that, like teach them how to budget, even if they’re tiny little amounts of money and, you know, it’s or, you know, or if there’s games like they like video different video games, you know, I know it can be weird for some of these video games are getting like gazillion gold coins for something.
And you’re like, okay, this isn’t even realistic. But some of these games where they’re buying things or having to pay for things, or, you know, if they can, if you teach them to do it and to ignore the cheats, you know, these are a little skills that you can teach them and have them help you to in the store, you’re buying something, but this usually buy this, but this one is a deal.
It’s a different brand though. Is it worth it to try it or whatever, or read the ingredients? Is it the same? Should you buy the store brand versus the real brand name of something and, you know, stuff like that. And what’s the, you know, trade off and it’s like having these, a lot of these things that we do internally, have those conversations out loud with your kid and have them help.
Sometimes they can have a lot, it can have some really helpful suggestions that can help you be more productive and save time or money.
Brynne: For sure. Those are all awesome resources. I’m going to make sure that I list those in the show notes for you guys, because it’s amazing . Morenike, you have contributed to and edited several books.
I’m going to encourage everyone to pick up your whole library, but super exciting news. You have a new book coming out in 2022. And I’m wondering if you can just tell us a little bit about that and where we can pre-order or pick it up whenever it comes out.
Morenike: Yes. And so it’s interesting. This project kind of birth was birthed during the time that, so are the most recent book that I co-edited along with Sharon Davenport and Emily Page Ballou, was published by Beacon Press and it’s Sincerely, Your Autistic Child.
And so this project, actually this new book, I was, you know, signed the contract for it while we were still working on Sincerely, Your Autistic Child. And it kind of was like, to me, I love Sincerely, Your Autistic Child, but we, but we also, because we wanted to have a breadth of voices and experiences, but it was also at a time when, the, the world was going through a lot of reconciliation.
I mean, or just, you know, kind of reckoning, I’m sorry, not reconciliation reckoning with regard to race and inequity. And a lot of these things, we were seeing the worldwide protests and movements. You know, that, you know, that occurred after, you know, George Ford, Armand, and all of these different things that were happening and continued to happen globally and discussions that we were people were having.
And then some of the hate crime that happened to the individuals who were working at, at the salon. Um, so kind of talking about some of the long-standing Asian discrimination that have occurred and then immigration related things, just so many things like a lot of hard questions and statues coming down and, you know, monuments being changed and so forth.
I think there was a lot going on. And so at that time it was really important for me. I was like, wow, I’ve grown a lot in this community. I’ve found family. I’ve found, you know, sisters, brothers, brethren, siblings of all neural types, whom I love and who we support one another, but they’re still, it’s still different when you’re a person of color.
And then even within communities of color, it’s still different even there if you are black, because like there’s a lot of, you know, it’s like, I tell people almost all human beings have privileges and marginalizations, there’s no one who has only one or the other. And so a person can be a part of a group.
That’s not a racial minority. They can be white, but they can absolutely face discrimination for their disability and or for their sexuality or their income or their religion, a whole lot of things. And those things are real. Those are very real marginalizations that are painful and hurtful. You know, a lot of these things we see a lot, antisemitism is very real.
Ableism is very real, but when you take it down to the bare minimum, no matter who you are, it’s like, no matter what community, what country, what continent is always, the black people we’re at the bottom. And, you know, we’re always, you know, so whether it’s the caste system, we’re looking at India, whether we’re looking at, you know, you know, the Americas, whether we’re looking at, um, you know, the immigrant populations in Europe, whatever.
There’s a hierarchy and we’re always at the bottom. And so, um, and it isn’t right. And it’s, you know, but it’s the case, it’s reality. And so that intersection of race and disability, particularly when we’re looking at neurodivergence is something that really, I felt needs to be explored more.
I could not think of a single book. Like I think about, you know, having co-edited All the Weight of Our Dreams in 2017. It was the first edited collection that we knew of for, and by primarily, autistic people of color. And there’ve been some things that have come out since then that have addressed those issues, but there isn’t a whole lot talking about it, despite all the conversations that people are having about race and about these, these very important books and curricula that are being shared and resources.
There still isn’t a whole lot with regard to, neurodivergence and the black community. Not from us. You know, there’s some academic tools from, you know, like educators of color who were non disabled. Um, but I felt like there needed to be something for our voices that shared our perspective.
So kind of taking the concepts of All the Weight of Our Dreams and Sincerely, Your Autistic Child, some of these other projects, but taking it in and, and, you know, squarely addressing the global black community. And so that book is neurodiversity en noir. So kind of basically so in black. And so it’s, um, it’s an edited collection that from Jessica Kingsley publishing.
And so it will be out in 2022, and it has perspectives from individuals all over the diaspora who are, you know, so people who are in Asia and people who are in Africa, north America, and so on all of these different places who identify as black and who are neurodivergent in some way. Dyslexia, intellectual disability, ADHD, autism, and just kind of our voices and perspectives.
And so, it will be available for pre-order in late, in late fall, 2021 through. Um, so if anyone, if follows the Jessica Kingsley, which is jkp.com, I think it’s their website. It will be on there. And I will also have links to pre-order on my website, which is morenikego.com. And so I’m excited about that.
As well as you know, again, still excited about Sincerely, Your Autistic Child, and then, the open access book, about the neuro-diversity, autistic community and in our diversity movement Stories from the Frontline that was edited by Stephen Cap, um, I’m a contributor to that and, it’s a free resource that anyone can download the entire book or parts of it online.
And I think it’s also a helpful read, even though it’s not. It’s not fully dedicated to voices of people of color, but there are, we are represented in the book and, and there’s just a lot of really great stories and history in that as well. And it’s free.
Brynne: That is so awesome. I am so excited. Everybody go out and buy all the books.
I promise you, they are wonderful. I have read most of them.
Morenike: We’re also working to get them in libraries. A lot, several of them already in libraries, like all the weight of our dreams. Isn’t about I think, 98 libraries around the world. Sincerely autistic child and this because of, well, we, um, have programs where we work with, you know, public libraries and university libraries so that people can have copies.
And then there are some nonprofit organizations that have their own e libraries, where parents, providers or disabled people who want to read certain books like an e-copy or whatever, can check them out for free. Um, through those resources, if it’s not in their public library. And often if you request a book from your public library, if they don’t have it, they might still order it.
So if people are interested in requesting any of these books, you know, or, or others, you know, they’re, it’s just great to have more, as many perspectives as possible sharing, you know, about diversity, neurodiverity, it’s great to have more of us sharing about how we can improve things and our stories and our experiences, I think we can all gain.
Brynne: Absolutely. Absolutely.
And that’s one thing, okay. So here’s my experience with libraries, guys. If you want to borrow a copy from your library and your library, doesn’t have it. If you submit like one request, they might not get it. But if you get five of your friends to submit a request at the same time, they’re way more likely to start carrying it.
And that’s, that’s another way that, especially like, I know at points in my life I’ve been super broke and I’m like, I want to buy books, but library’s free.
Morenike: I love libraries. People, you know, I spoke at a library conference once and I just told them that like, they were my people, even though they didn’t know.
And they just were laughing. Cause like, you know, even today I know that, you know, there’s, you know, libraries have evolved, they’re kind of like more, you know, technology and learning resource centers. So as we have E resources, as well as physical resources, but there’s still, it was a place where, you know, there were, there was so much available for someone who was different and it could be, it could be a great Haven as well.
And there’s some amazing resources out there too about, you know, like inclusive libraries and. And ways to, you know, and even some of the, like the little free libraries and community libraries, like my colleague Lei in Washington state has the, you know, Ed Wiley Autism Acceptance Lending Library and some of the other neuro-diversity libraries.
And I just feel like there’s so much that people can get, like we just have to use, you know, there’s nothing wrong with spending money and we’re all about, if people can, are in position to read or purchase something. We absolutely want it, but ultimately we just want everyone to get that information.
So if it means checking out from the library, then check it out from the library. It’s not about, you know, going to spend your money. It’s about getting this info.
Brynne: 100%. 100%.
So like Joyce and I said at the top, we learned a lot from this episode and we hope you did too. On my end. I know it’s changed the way that I parent across certain domains in a meaningful way for the better.
This week, especially, we want to encourage you all to check out the show notes. Morenike listed so many great resources at the end there for teaching financial literacy and much like this podcast episode, reading any and all of the books they’ve worked on can change the way you understand your child’s neurology for the better.
Now, this episode was spurred by a listener question. Specifically, this listener was looking for ways to teach her child to keep themselves safe from financial predators, particularly when they grow up and leave her home. So in this episode, we focused on the best ways to teach boundary setting skills, to autistic children from an autistic expert themselves.
And one of the big ways that we learned was just using that strength of pattern recognition. In next week’s episode, we’ll sit down with Bob Sullivan. Bob is a technology journalist whose work has a heavy focus on consumer protection and financial scams. So Bob’s going to break down some of the most common patterns we see that these predators use. Our hope is that you’ll be able to take the information from Bob and apply it to Morenike’s framework.
And hopefully that addresses the question in a comprehensive way, but definitely reach out to us if you want to know more about any of the finer points. As always, we hope you’ll subscribe to this podcast on your platform of choice, whether that be Spotify, apple podcasts. You can also go to MomAutismMoney.com to join our email list for regular updates and join our exclusive Facebook group to ask questions and get them answered by the experts here on the podcast.
All right guys, have a great week. We’ll see you next Tuesday.