In this episode I have a great conversation with Eileen Lamb, A Blogger and Creator of The Autism Cafe. We talked about her experience being an autistic parent of a child with autism as well as autism advocacy.
Eileen Lamb, author of "All Across The Spectrum" and “Be The One,” is the founder of The Autism Cafe. She’s also a writer, photographer, and podcast host. Born in France, Eileen now lives in Austin, Texas, with her husband and two sons, Charlie (8) and Jude (6). On her blog, she shares the ups and downs of raising a severely autistic child while being on the autism spectrum herself. In her free time, Eileen enjoys daydreaming and road trips.
Hello, and welcome to the autism in real life podcast. In each episode, you'll get practical strategies by taking your journey into the joys and challenges of life with autism. I'm your host, Ilia Walsh, and I'm an educator and the parent of two young adults, one of which is on the autism spectrum. Join me as I share my experience and the experiences of others, so that we may see the unique gifts and talents of individuals on the autism spectrum, fully recognized.
Hello, everyone, and welcome. This is Elio with the spectrum Strategy Group. And today, I have Eileen Lam with me here from the autism cafe. And she is a blogger and just, I would say an influencer, definitely on all different social media. So I've been following you for a little while. And really, you know, a lot of your messaging was very impactful to me. So I wanted to connect. And, you know, I'd love it, if you could just give our audience a little bit of background about yourself, because they might not all be seeing what I've seen. So if you could just give a quick background, that'd be great.
And thanks for having me. By the way, I'm really excited to be here to share my story. So I'm a ulam. I'm an author, photographer, blogger, influencer, a lot of things from France, but I live in, in Austin, Texas. Now I'm on the spectrum autistic. And so are my two children. Charlie, my eldest is level three. So on the severe end of the spectrum is nonverbal. And then my youngest son, Jude is very high functioning like me and was actually diagnosed very recently at at five years old. And okay, well, excellent. Um, so, you know, I think one of the things I found interesting first was, well, your, your images, your, your photography, work is beautiful. So that was what captured my attention first, to be honest. And then from there, I you know, the captioning and just you writing about your experience as a parent, as a mom, and then also disclosing you, yourself being diagnosed? Can you know, just curious, was that a later diagnosis for you? or? Yeah.
Yeah, yeah, I was. I was 26. I mean, I always felt different. You know, when I was a kid, I grew up in France.
I mean, even now, in France, autism is so unknown to all French people, the French culture. I don't know the exact numbers. But there are so many less kids being diagnosed with autism in France, but right now as of 2000, to 2021. So back then, you know, I grew up in the 90s. It was like, they had no chance of getting diagnosed, and friends, especially being high functioning. But so after Charlie, my son was diagnosed, he was diagnosed at 22 months old. So very early.
I started telling my mom about it, right. And it was like, you know, Charlie has been diagnosed with autism. I know, you probably don't know much about it. But this is why and why. And she's like, Well, no, he's not autistic, you're the exact same way as a child. And
I'm like, Well, I know he's autistic. He was just diagnosed and like, pretty sure So have you ever said that maybe, is because I'm on the spectrum.
And then from there on, it started I started researching. At first I kind of shrugged it off, because I didn't know much about high functioning autism at the time. So it was weird to me that I could have the same diagnosis as my son was like nonverbal like very, in his in his own world. You know, I was in my own work. But
anyway, I, I went through a therapeutic assessment. Basically, he was a psychologist. It's, you know, dozens of hours of tests, interviews with my many members. cognitive testing, observation, I mean, it's very, a long, long process. And at the end of it, I was diagnosed with high functioning autism, right, right. Now, how do you think that has helped you?
As a parent as well? So again, again, I'm wondering, were you a parent before you were Well, yeah, I guess because you found out your son was on right. So
how did that how did that
Maybe change your way of parenting or looking at, you know, your own,
I guess your own day to day and your, your child's day to day.
It didn't know why that was trollee I'm very aware of certain things that other people are not aware. Like, for instance, when he's sensitive to noise,
you know, knows that all people are just able to ignore, like, it's no big deal. And Charlie and I, we react, we react to the same same type of noise, even if they're like, not super loud. So for instance, I'm able to, you know, provide Charlie with more like support in those moments, where other people don't understand him as well, as I do.
But as far as parenting in general, it hasn't changed. Much. I mean, I'm still like, doing my best basically.
It's, it's hard because especially with Charlie,
his needs and the support, he needs changes constantly. So I'm always having to readjust how I parent him how to provide a support, and it's, it's constantly evolving and changing. So I can't sit I have like a specific parenting style or something is just
listening to what he needs. And I do my best, you know,
to use my own autism as a as a guide to understand what he's feeling even though our, like I said, I'm very high functioning, and he's on the CBO side. So it's different. But, you know, it's still the same diagnosis, there is overlap on certain things. And I use that to to guide me. I think that is a parenting style, right following your child's lead, no matter no matter what.
So I'm curious, I know, we've talked about like, the disparity between maybe your own diagnosis, your, you know, Charlie's diagnosis, and then your younger son's diagnosis. It's a conversation I had recently
with someone else about,
you know, the, you know, there used to be the level setting, and then it was taken away, or we had Asperger's and then we had PDD NOLS and we had autism, then those went away, then we tried leveling, then that went away. And now we have some leveling back.
You know, I, you know, when I was talking with this other person, it makes it very, I think it complicates it in some ways more, to have all of the different die, you know, all the different terminology that we've grown accustomed to. But also putting it all all under one bucket of ASD also has its own complexity here, too, right. So so you experience a bit of all of it on a regular basis. So how do you? How does that help or hurt for you? I guess?
Well, personally, I think the levels are good, just for the reasons I was just talking about, because it can be hard for people to understand how Charlie and I were both artistic yet he can communicate his needs. And I'm here on a podcast telling you about my own autism, you know, but it's the same diagnosis. So we need a distinction there between high functioning, I don't like the term low functioning, I try not to use that I say severe, high support needs for Charlie. I feel like low functioning is a little bit degrading, even though, you know, it's true. And I wouldn't take offense. But.
But yeah, I think it's important to have some type of distinction there. At the same time, just because someone is high functioning doesn't mean they don't struggle, you know, so I don't want to do that either. Like, for me, I have the opposite issue. from Charlie, My issue is that people don't see my disability. So they just assume I'm, quote, normal. And then if I can do something that 31 year old woman should be able to do,
you know, without thinking people are very confused. And that's the issue is an invisible disability that people don't see your needs. They don't see your differences. They just expect you to be able to act like everyone else, and I get issues. So yeah, I think levels are important. But you know, just because someone is a functioning doesn't mean they're not struggling. I think that's Yeah, and I think that adds the complexity of how, you know, we we work with different people. I know, I was actually just speaking to someone you know, who worked in the employment world. And she usually consult with employers, and they say, Well, if someone has ADHD, what do we do and if someone has autism, what do we
Do and if someone you know, like putting people in boxes like, like there was some magic checklist of what you do
when someone has a particular need, you know, or I guess label is really the better word or a diagnosis, then we must do these things. And I think,
you know, I think there is that misconception sometimes in you know, even in schooling, I know when working in special education, you're creating, you know, an IEP, there are some schools who actually have the Oh, well, when someone is diagnosed with autism, we do all of these things. And it's like, well, but does the kid actually need all of those things? Or are those not the right things? Maybe they need other things? So have you experienced that as well?
Yeah, anywhere really.
You know, both Charlie and Jude just started public school this year, for the first time. And I'm navigating the system right now. And, you know, with Jude, we didn't get him
an IEP, because he's, like I said, is really high functioning, and we can only see where, how he's gonna manage without without one. And I know that schools, they fight us so hard, especially if the child is you know, like Charlie's, they can say anything he can talk, you know, it's so obvious. But for a child like Jude, where it's not so obvious that they have autism.
I've heard horrible stories of parents having to, like fight so hard for their needs to be met for having an IEP in place and all of that.
Because I think, yeah, but Charlie, so he did one week at school, right, first week of school. And
right away, as they saw that they couldn't provide the support he needs at the school, they are house. So tomorrow, we have the IEP meeting, to discuss transfer. So it's already getting transferred after a week, because his needs can be met there.
honestly, they were asking me just today, like, what needs Do you? What are what are his needs? You know, what are we gonna work on at the school? And I
mean, I don't know, because I want him to, like work on, you know, learning, like other kids numbers, that type of stuff is eight, you know, but I also know, it's not realistic, because he can't even communicate, and he has all of these, you know, behaviors on the side. And it's just, I, I don't know how to get
the best support for, for them. But fortunately, yeah, no, it is it is a hard process and just just entering into the process. I know many parents who have multiple children who who would, let's say qualify for an IEP, you know, they choose, they choose sometimes one of them because it's like, Okay, I know, I need one needs more support than maybe another one. And I need to focus on that. And I think
that gets that gets into the topic of right, like, what is it that a family is able to, to do? I mean, and what I mean by that is, each family and each child is so unique, that the needs are going to be unique, and not just in what they might need. Right? So here the school is asking you, what is what is Charlie need? And you're like, I don't know why we're figuring it out. And also, it's not just what they need, but also what is this, you know, family willing and able to be able to support? I know there are so many I know when again, there's that checkoff list when someone gets diagnosed, it's like 25 hours of ABA, or, you know, whatever the number is, and some families are like, Yeah, but they also have speech. And they also have OT and, you know, we have regular family, like, there's a lot of commitment there. So what works best for you, one family might not work as well for another family. And also, you know, working and there's, you know, both parents might be working, or whatever the sitter family situation is, you know, might not allow for all that. So we need to really look at what works best for each family, I think.
Yeah, I agree. And,
yeah, even over time that digests change to its nuts. Yeah. I had thought about it when I was going through the school process.
You know, I was one of those parents who had a hard time getting, you know, anyone to acknowledge, again, the invisible disability part of it was, was hindering my son's ability to get those extra supports that he didn't need. And also very articulate and, you know, No, there's nothing. It's just a little, you know, they just kind of wanted to minimize that. And it wasn't until we moved to that we actually got the support that he needed and what it what a big difference
But then it was also choosing Well, there's this big list of things that I know he might need. Where's my priority? Right? Like, what's the priority? And for us? priority was anxiety. So we were like, we're gonna focus on that. Because if, if we don't work on that, well, some of the other stuff won't matter. We need to minimize, right? How hard it is to be at school, let's say.
So how have you, you know, how have you tried navigate? I mean, I know that they just started school. But I know that there's been a lot of work done probably before school, just from your posts and things. How have you navigated like, kind of choosing what works best?
Well, clearly, we make the right choice, because we're already to change. But we knew from the beginning, we're just like, what we need to do right now is get Charlie into the school system and take it from there. Because
I mean, we didn't really have a choice to be honest, he had to start at the school, we, you know, in our district.
So we knew that most of the work would be done after they actually saw him. You know, I tried to get him a very rarely before school started, but they have like a crazy time to do the evaluation, which is like 45 to 60 days, I think.
It hasn't happened yet. And with the summer break, it just didn't happen before school started for them to evaluate Charlie, and I have all of that in place before we first got started. But now that the ball is rolling,
I know we're going to be able to get him up when he needs. And we don't even know yet what that is because we still have a choice between like, you know, another public school, but that as your life skill program, where you wouldn't be able to be with other kids, you know, neurotypical kids, I can mix of both. And then there is a special needs school where he will be with disabled kids. Well, the thing is, they're they don't they're the ABA therapist. I mean, the staff is very trained at that special needs school, you know,
but it feels like,
I don't know, part of me would like him to try to go to, you know, public, General school. Nothing wrong with being with, you know, only disabled kids. But, yeah, I'm just curious, I guess. So I think what I want to do is try and add that
as a public school that has more support than the current one. And if that worked out, then move into a,
you know, a full time.
Special, especially the
Yeah, no, and I think it's important, you know, having this conversation, because this is, I would say, you know, the fact that you're only one week into the school, the school year, that they've already raised that, Oh, wait, I don't know if we can do that here is actually a good thing, which means they're really being observant. Because in other schools, sometimes kids get lost, or they try and now you know, maybe sometimes we lose a few months. And we haven't, you know, there hasn't been much progress made. So I commend your district are undoing that, which is great. And also just, you're thinking out loud here with me about what what would you know, what might work? And why would you choose one school versus another? And again, I think so many people, and every people have had good experiences with both types of schools, and people have had bad experiences with all the different choices, right. And I think something that I try to impress upon families I work with is that a lot of this is a trial and error. process.
Right? I think, you know, like you said, we're all trying to do the best we can. But we try something maybe knowing in our heart about something or knowing how we know our kids, and then pick something that makes sense and try to see how see how it goes and navigate that process. So So I appreciate you sharing with that because it is real. And I know for sure, since we're early on in the school year, that there are many people who are hitting that, you know, or just sending their kids off and hoping I didn't get a phone call today. That's a good thing, or something like that, you know.
Now, another thing, you know, I think, again, in choosing the right resources, and we you know, I chatted with you about this before talking here today was one of the some of the posts that moved me specifically were ones around ABA, and I think you had mentioned that there's, you know, he's looking at it this public school there are therapists there, but I think you have been working with ABA therapists beforehand
and I know many
families do. And one of the things I've been trying to kind of tease out from people is, you know, I think ABA, there are a lot of misconceptions around ABA. And when I say ba for those, if you haven't listened to some of my other podcasts was applied behavior analysis, which is not an autism specific therapy, by the way, for those who don't know that it is used for a lot of different things.
But is that there are a lot of misconceptions. And that's how I started my work. And I transitioned into other teaching, but I know you have worked with a therapist, and has been very successful in a lot of things for you and for your family. And you got a lot of backlash for that online, you've gotten a lot of people writing some pretty I surprisingly, offensive things.
And your responses are so gracious and so honest. And I really appreciated that and I appreciated you bringing your perspective.
You know, I'm curious, like when you when you put yourself out there, as you know, and as as an advocate, and as a parent, about what your experiences and you get that kind of feedback. I mean, what was your were you expecting that kind of feedback or or were you?
I mean, not the very first time, but I, I learned very quickly that talking about ABA near autism community would expose me to pretty severe backlash.
I know it now. But I'm not going to stop talking about it just because people will get mad because when parents get a diagnosis, like you said, often, the doctor is going to recommend ABA, and then the parents are going to go online. And they're going to look for you know, hey, what's ABA, and they're gonna see all the horror stories like terrible stories about ABA, it's abuse, and it's like training your dog, again, it's going to give them PTSD. And if we don't talk about the other side, which is like Normally, I don't know, an actual stats, but probably like 99% of you know, experiences are good. If we don't talk about that side, then people are not gonna put your kids in, in therapy, even though that could benefit them so much. So that's why it's so important for me to keep talking about it, even though people are gonna insult me. I mean, and it just like, it's always the same thing. So it's not even. I mean, that makes me still but at the same time, it's like, yeah, yeah, I know, I'm using my kids. Thank you. I've heard it, you know, it's
okay. Yeah. And I think, yeah, yeah. You have a blog post about the misconceptions around ABA and my understanding from, you know, just kind of hearing risk, not responses just to your post, but to a lot of the autism community talking about ABA.
You know, is particularly Oh, you know, it stops kids from, you know, stimming, which is like really important to regulation, you know, emotional regulation. And, and, you know, the other is, you know, it wants it that the central tenant is to make kids less autistic or not autistic or be normal, right, like to fit into the normal society. And, you know, having started in that process, like 20 years ago, myself,
it has changed so much since when I learned how to have learned that, you know, many, many years ago to where we are today, I think it's very different. And I know you've talked about it, but it also depends on the provider and the program that you're in.
But But can we can we talk about aside from what we know, what are we think people know about ABA? I mean, I don't think those things are true. I think maybe they were once true. I think I remember the minimizing, you know, stimming like even just hand flapping, which now they would never do or shouldn't be doing. But, you know, if we're talking about more self injurious behaviors, right, we need to look at those there are these extremes here and I think people are missing that part here.
Yeah, yeah. Well, that's the thing though. A lot of the vocal anti ABA people on the internet they're again very high functioning and maybe there's teams are not harmful but for a lot of autistic people when they're stimming it's not just going to be cute hand flapping they're going to be like kidding themselves head banging, scratching. I mean stimming is known as harmless and distinction needs to be met there like why would I not stop that is not happy is hurting himself.
And it's, it's confusing. Yeah, I haven't seen therapists stop steaming unless it's harmful. Or it's if it's so concerned that like, the child cannot do anything else. And he's just like, you know,
out of control and wants to focus on anything in that case, but that's the same as a child who would be running around the classroom. Instead of, you know, sitting and coming down to to listen, like, it's just, it has nothing to do with the fact that it's an autistic behavior. And same with everything else in ABA, when people say, Oh, you're just trying to make your child normal? No, I'm trying to teach him to communicate, I want him to be normal. I want him to be happy, like, shouldn't doesn't he deserve to communicate like any other child his age, because he's not happy when he can communicate? You know, so I'm not just gonna, you know, let him be artistic and not be able to communicate in the name of neurodiversity? No, like, that's not how it works. Same as him, like running in front of cars, or eating non edible objects and no non food.
That's not good. Like, that's the type of things ABA helps with? How is that negative? Does that mean I want him to not be artistic? No, again, I just want him to be safe, independent. And I want him to be able to communicate his needs, like, these are skills that everyone takes for granted. Until they meet someone like, Charlie, you know, and I think everyone deserves to be safe, independent, and to be able to communicate, and that has nothing to do under diagnosis or not. These are just basic skills. That's what Yeah, no. And I know, there's there's such a wide range of pieces. And I think the more individualized, we look at that the right, the more helpful that can be. And I, you know, I appreciate you sharing, you know, how, you know, we're talking about severe behaviors that, you know, most people don't see. And I think,
I think sometimes what gets lost in communication is possibly, you know, there are autistics that cannot communicate the way we're used to. And so we're not even hearing that voice, oftentimes, because we haven't, they don't have the tools. They don't have the platform. And and and again, I know you've mentioned it in some of your writing, but it's, it's not necessary. We're not necessarily talking with words here, either. There are so many ways to communicate now with technology, and and even simple technology, you know, like pictures and things. And I think that's the sometimes I think we're not hearing that voice of people who, you know, aren't don't have the the ability to be able to use their words and the way we're used to hearing them.
Yeah, I think it's important. That's why I use the word communicate instead of talking. Because,
yeah, communication doesn't have to be verbal. I would love for Charlie to talk, don't get me wrong, but if he becomes freelance, using his iPad to communicate, I wouldn't be thrilled. I mean, his iPad, sign language, anything I just want him to communicate, it doesn't have to be with his voice. Right? Now, he can only communicate basic needs with his iPad. So like, I want a cookie, you know, basically, food items, which is great, you know, cuz I'm so much better than when he was younger, and before IBM, when he couldn't tell us anything, at least now.
He can communicate those basic needs. But if we don't know if he's hurting, we don't know what he's feeling. We don't know what it's very color is, you know, all of this question, open ended questions. We don't and I think, you know, and again, not being inside Charlie's, you know, head or other, you know, people like Charlie, we, I can't understand necessarily what the level of frustration might be. But this sometimes does account for behaviors that we might say, because, right if if people aren't able to understand what I'm trying to communicate, I remember reading a post somewhere that you know, what we see as possibly and I will put in quotes, bad behavior, or poor behavior is really just trying to communicate a frustration or communicate a need, and we don't understand it. So you know, they're doing the best that they can to try to get us to at least pay attention to figure something out for them.
Yeah, I think that's true. neurotypical and adults, when I'm angry often is because I feel misunderstood and I want to express myself, you know, right now
No, definitely. And it's funny, a lot of the things, you know, it comes up often. A lot of things that we say, well, that happens to neurotypicals, too. Yeah, I mean, I think it's a it's just a human thing, I think, right, if a lot of behaviors.
So, you know, again, as you as you move through, like the process, maybe going into, into more schooling and as your kids get a little older, what
are the things that you've discovered as you're just entering the process that maybe you had hoped? People did a better job at? Or maybe you would like people to do? I know, we have a I have a lot of educators that listen to this podcast as well. And, you know, many are just looking at what can I do to make things better for families, for students? What I've worked with a bunch of educators who are working on parent communication right now. So is there anything that you've discovered up till now that you wish could have been done a little bit differently? Or better?
Well, yeah, I wish to evaluation process was, was faster, could have been evaluated before school started.
But that happens at some schools. I don't know. Maybe we started the process too late may have been a bit of our fault. I don't know. But I feel like, I mean, that's the law. Like I said, I think it's 45 days to,
to do the evaluation, that seems like a very long time, and should be in everyone. everyone's best interest to get that done as soon as possible. So, you know, the school knows how to help the child and solution, the child is actually getting help. So like, right now, that's the main thing where I'm frustrated.
But yeah, you know, it took them like, two hours to figure out they couldn't take care of
it. He hasn't even been in the classroom, they have him like in a, you know, it's like there's someone at the school basically taking care of him one on one, like, round, and he's not even in the classroom environment. They just don't have anyone who can do that for him.
I mean, at least in a school start, like it's a transition, I guess. But I'm looking forward to, for him to actually be in real classroom and on schedule. Yeah. Yeah. And I think sometimes it's the communication piece. You know, I know there is the 45 days, and a lot of it is because there was so many requests for, you know, similar type of evaluations. And I know, you know, it's interesting, but he had the diagnosis going into school, right, so we can just have like a real time conversation here. But So did they not want to start with that diagnosis, you know, with with a medical diagnosis first, in addition to the edge, I know they're doing the edge, they are waiting on the educational one now, right.
Yeah, I'm not sure. I'm not sure why. But even though you know, yes, the diagnosis, medical diagnosis, I feel like they should have seen him made a point to see him before the school start, because autistic kids are so different. And I can tell you about Charlie, but it's never going to tell you as much as if you spend like an hour with him, you know, they will have much more by just looking at him interacting with him.
Yeah, I yeah. Yeah. I was thinking No, I was just curious, because when, you know, usually when there's a medical diagnosis, you know, they there's done all of the, like, all that background work, and all of the, you know, observations and all that all that piece would be something that would transfer over as additional information that they could use. So I, you know, just here just just thinking about, it might be something that you can bring to the school and say, Hey, we already, you know, he's already been in programming, these are things that we've been working on, which, you know, could could transfer. I mean, I guess, if they don't have the resources, then that takes time and things, but, but that could be, you know, perhaps something we could talk about offline to a little bit and maybe, if you need a little bit of help, I can help you with that.
But yeah, and so I'm just curious as we kind of, you know, think a little bit about kind of wrapping up,
you know, is there anything else that you you hope that families could kind of take away from the work that you do, and, you know, not just families but I will say educators and, you know, you've worked with, you know, I have therapists who listen in as well and and adults, I have a fair amount of
adults with autism aren't that listen in as well, any, any message that you'd want to share with them?
Well, I think my platform, what I really want people to take from it is that we're not alone. Because that's something that was really hard for me after Charlie's diagnosis is that I felt like, no one understood, I felt so alone. And I don't know, I think, again, it's a human thing, it's really hard to to get through things when you feel like an island. And I really need needed to connect with people. And
I think the social media really helped, helped me, and now hoping that I can help other people feel understood and supported. And just less alone. You know, we don't know, I don't know all of my followers, but I know, they can read my words and see that we're all going through similar things, even though it's not exactly the same. And I mean, it'll come forth, but it's, it's something you know, it's bigger than rattling. And I think I know, you made me feel that way. So being able to connect that way. So I appreciate that. And, and, you know, so if people want to find your work, because this might be the first time that they are hearing about you, where, where can they find you?
I'm at the autism cafe, on Instagram, Facebook, Pinterest, everywhere.
And I book is to actually Oh, my second book just got done printing today. It's being
right now. So Can Can you share the name with us?
Oh, yeah, right. So the first one scroll all across the spectrum. It's about autism. I talk about my diagnosis, Charlie's diagnosis. And like I said, I'm trying to make other parents feel less alone.
And the second book is called visa be the one and it's more of a relationship, self help. Talk about anxiety. And
I guess it's kind of more about my own autism and my own personality without actually saying it is. But yeah, I'm great. Well, I think there's a lot of people who, you know, are looking to find a lot more information and consume it. And again, exactly for what you're saying is to not be alone and to not feel like you're the only one experiencing and and you know, I'm having more and more conversations like that around everyone dropping the mask, right, everyone not feeling like they have to wear that mask wherever they are. And just understanding each other's humaneness. And I appreciate you bringing that to the community.
Thank you so much, and I will talk to you soon.
Thanks for listening to autism in real life. This is Ilia Walsh. And if you like the show, please hit subscribe so you can get notified each time a new episode is released. I also offer training, consultations and parent coaching and would love to help you in any way that I can. You can check out my offerings at the spectrum strategy calm and when you join my email list. You can get a code to receive a discount off of an online class or a coaching session. Looking forward to hearing from you Take care and see you next time.
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