Episode - 5 Eileen

Episode - 5 Eileen: Audio automatically transcribed by Sonix

Episode - 5 Eileen: this mp3 audio file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.

Malia:
You're listening to the Autistic Tea Party podcast, I'm Malia

Cat:
and I'm Cat. And together, we will be your hosts as we explore some of the hottest topics in the artistic and neurodivergent communities at large.

Malia:
We'll be speaking with parents, therapists, experts, educators and more to dig into the more nuanced discussions being had in and about the disabled community.

Cat:
So join us as we sip and spill the tea.

Malia:
This is the Autistic Tea Party podcast.

Cat:
AuTeach has been hard at work to bring you some of our greatest content yet, join us this summer for 12 weeks of free and brilliant webinars every Wednesday starting June 16th at 8:00 p.m. Eastern Standard Time. When I tell you that you're not going to want to miss a single talk, I'm not saying that lightly. We've got therapists, educators, parenting experts and more. So head to AuTeach.com now to see the line up and get your tickets to the event. Welcome to the Autistic Tea Party podcast, everybody. This week we're super excited to have Eileen Lamb of the Autism Cafe on. Eileen, could you just tell our listeners a little bit about yourself and what you do?

Eileen:
Hey, everyone, thanks for having me. I'm so excited to talk to you today. I am autistic and I'm also a mother of two autistic children. I'm a blogger, photographer and author. And I try to raise awareness and acceptance about autism on social media.

Cat:
Wonderful. So I this is such an important conversation that we're planning on having today. And I am super happy that you agreed to talk to us, because I know that your experience with the harassment and bullying and targeted sort of social media attacks and things. Can you explain a little bit about your experience with that and kind of what your first interactions with the neurodiversity movement had been?

Eileen:
Yeah, the first time was very shocking for me because this was at a time when I didn't know about it. I was just talking about at that time, I wasn't even diagnosed myself. That was, I think almost six years ago-ish. And I I posted about how my son Charlie was level three autism, which is a legit diagnosis. He'd started talking and then he stopped and I used the phrase autism is a is a thief or something like that, and that did not go well for me. And that was six years ago. And you know what? I probably we don't use these words again. But that said, what came my way for using these words, which came from a place of pain, my son being able to communicate one day and the next, it's all gone. It was really shocking. And people told me, you'll never be welcome in the autism community. Your son will grow up and he will hate you. You're abusing him, you're ableist. And I mean, I heard it all. And that was like my first big experience with the movement. And it left me feeling so wiped out and basically questioning myself, my parenting pretty much everything, because it was like hundreds of people telling me the same thing.

Cat:
Right. And that's sort of like a common experience that I've seen when it comes to, like parents of autistic children, particularly if they are not part of the Neurodivergent movement, is that when any sentiment of this concept of grief is something that is really heavily criticized by the neurodiversity movement, where apparently you're supposed to just have no feelings about, you know what? And I think a lot of it and I'm sure you can attest to this a lot of it, because I'm a mother, too, comes from the ideas that you what you thought would keep your child safest. Would keep them successful and would keep them. Able to adapt and like live in the culture that we live in, and so when you're told when you get this diagnosis and when you're told and when it starts to manifest, that like your child is not going to meet those expectations and that your child is going to have a harder time of life, that there is a grieving process that comes with the fact that you have to now grapple with the fact that this piece of your heart is going to go out into a world that is going to essentially view them in a very different way and that they could potentially be targets of Lord knows what discrimination, ableism and things like that. Why do you think that this idea of grief is pushed back so hard against?

Eileen:
Well, I think people take it personally. They project their fear and what they believed when people say parents that they're grieving their child diagnosis. But here's the thing, though. We're not grieving for our child. We're not giving the child. We're grieving the things that will never happen, that will never be easy for them that other people take for granted. We're living the dream of because. Autism, it's not only hard for the parent when we talked about it, the suffering for parents is seeing our children suffer. Like for me, it's heartbreaking to see Charlie, my oldest was level three, not being able to communicate when he's like in pain. For instance, one time we knew he was in pain because he was limping but couldn't tell us where. And he took over 30 x rays to find the fracture because he couldn't even tell us. It's my toe is my knee. It's my knee. It was his toe. And for instance, like, that's heartbreaking. As a parent, we feel powerless. And I think it's OK to feel sadness and grief over that. The feeling that as a parent, we don't have any power really over helping out our children.

Eileen:
And that's something that's often forgotten. And like you said, I mean, even for them, like it's going to be a harder life than if they were neurotypical. And that's something we can kind of change by talking about autism, educating, raising, awareness, acceptance. But even in the best of world, like someone like my son Charlie would still be disabled and that would still impact his life in a significant way. Like even if, let's say, everyone was accepting of autism, the fact that he can communicate important things like where he hurts, that would still be disabling and and sad so it's I think it's it's normal and it doesn't mean anything about the love we have for our children. And I think that's often people make that bridge and they think that if we grieve the diagnosis, then we don't love our children. And that is so far from the truth. I mean, we grieve because we love them and we want them to have it easy. I mean, and as an autistic person myself, like, I want my children to. To have it easier than I did know,

Cat:
That's and I think that like yes, and I completely agree that there is that level of sadness and, you know, it's really hard to watch your child struggle in ways and not be able to communicate that to you. And then also what I've noticed a lot of parents and mothers in particular, because I think a lot of it's rooted in misogyny, whether or not people want to talk about it. It's leveled at mothers. This sort of like if you express any kind of you know, today was a hard day. You know, today my child had a lot of meltdowns. Today, my child was really it was really difficult to cope with X, Y, Z. We had a change in our schedule or whatever, and it was a really rough day. And parents, it's like I hate the fact that parents will express that momentary, like breakdown that they're having because the day was really hard. And then people are like, wow, you know, like, is this really how you see your child? And it's like there's no space for you to have feelings about like like the the weight of being a parent. It's not that you view your child as a burden, but it's the weight of parenting and parenting. A neurodivergent child is different than parenting a neurotypical child.

Eileen:
Yeah, and people don't do that to parents of neurotypical children, like they can say, I had a hard day and no one's going to blink. And when it comes to saying that about raising an autistic child, which is harder, I'm going to say it. It is harder. We're not to feel I mean, it's like pretty horrible. And what really gets me is the number of people who message me privately on social media telling me I'm so happy you said that because I felt like I was crazy. I was all alone. Why did I feel that way? That it was hard? Because everyone is talking about how autism is so wonderful. And I'm having hard this and we've reached a point where, like, it's making so many parents and people feel so alone and isolated and depressed because they think they are alone. Experiencing those feelings, even though they're not, is just that so many people are terrified of saying anything a little bit negative about autism. And even when I talk about autism in a negative way, I'm always like trying to be so careful with my words because I don't want to upset anyone. And it's it's tiring. And I think it's it's reached a point where it's like dangerous for a lot of people. Mental health of of parents and they matter, too, because they're raising autistic kids until they're 18, but often longer, too, because some autistic adults are not going to be able to live on their own, you know? So.

Cat:
Yeah, absolutely. Yeah. And that's something I've tried to make like that. I've brought up many times on my Tiktok channel. Is that like when you have people that are into it, like, you know, because autism is is one thing, but you also have co occurring disabilities, things like intellectual disability, other physical disabilities and things like that, where the parents, the support care workers and things like that are. Part of our community by proxy, they have to be because they are the support system, they are the advocates, and when you isolate a person's advocate or their support care system, then you're isolating that autistic person. So regardless, it does not like regardless your isol- that you're actually edging out autistic people from the community by cutting off of their care workers. And it's really frustrating because it also is the sort of like. I'm sure you're aware of the whole you know, they're trapped in their mind narrative, you know, you just don't know what your child is capable of because they're trapped in their minds and you just can't get through to see and whatever. But what's interesting to me is they don't understand that. That's like there's two sides of that same coin where it's like there are people that live with many conquering disabilities that will not have the capabilities, no matter how hard they try, no matter how many therapies they go through, no matter how many interventions they have, that that is their reality. And people want to spin this narrative that it's like, no, if you just you know, I think there was a comment on a video a while ago.

Cat:
It's like let your child, your autistic child grow up autistically. And it's like, OK, but then to a certain point, it's like brushing teeth as a matter of health and hygiene, you know, like that actually can cause health problems. If your child will only eat bread forever, that is going to cause long term health problems. And it makes no sense that there is. I mean, and as you brought up before, it's like there's no there's no you would not say or hold these same kinds of standards for neurotypical children. You know, the standards are very different when it's like, oh, well, you're let in. And not to mention the fact that, you know, I worked as a para educator for a couple of years and there were children who had CPS called on their families because their parents would send them to school Pop Tarts, because that's all they could eat. And without the information of what is going on at home, intervention, intervention, state intervention was taken against these families. And it's one of those things that like, no people are like, just let your child eat dino nuggies forever. It's like, OK, but like realistically, there are actual consequences to these things. And it's like a very like rose colored glasses, sort of like in an ideal world we'd all be able to do this. But it's like we don't live in that ideal world and there are consequences to the families and the parents. When you do that.

Eileen:
I, I couldn't agree more. And I think it's sad that the parents are not given a voice because, I mean, they care about their kids. More than strangers on the Internet, just because you share a diagnosis with someone doesn't mean that you know better. I mean, parents, caregivers, they live with the child like they know the child better than anyone else. Every autistic is so different. I mean, I've met so many autistic people. I have to autistic kids. I'm autistic. None of us are the same. And that's why sharing a diagnosis is I mean, sure. I mean, you can get some insight because we share some common characteristics. But really, it doesn't make you an expert on my child. If you've never met them, it doesn't mean that you know better than me. And like you said, some of these things we need like we cannot just grow up autistically or whatever that means because there are skills that someone needs to have. I mean, if you don't get potty trained, sure, you can have diapers. But is that even good for the autistic person? I don't know. I feel like they would want to be able to be independent to set- same with eating. If you want eat chicken nuggets, well, you're not going to get all the nutrition you need and all of that. There are so many autistic behaviors that need to be worked on that are not about just. Because like a narrative like it's trying to make an autistic child not normal, no, it's teaching the child skills that so many people take for granted. How about safety? Like when Charlie is near the street, he just runs. There's a car. There's no car. Doesn't make a difference. He'll run across the street. If we don't catch him, it could just die, do you not change that. I mean, I've heard their argument is that if he's running, it's because he's trying to escape his abuser, which is me. So there's no reasoning. But, yeah,

Cat:
It's like it really does look like people will go to any lengths to make like to not make common sense or to, like, spin a narrative that sticks within this like thing that seems so removed from reality because it's like, where do you think our children live? They don't live in like autistic land. They live in the culture that we live in and not intervening in some of these behaviors. And not to mention the fact that some of these behaviors, especially for more marginalized people, it's like that further marginalizes them and is like actually more dangerous. For certain populations of people to have autistic behaviors that are very visible and it ignores nuance of why some interventions are actually important.

Malia:
So we know that you blog right after you started blogging, after you started getting followers and eyes on you and especially maybe some of the eyes who have substantial followings themselves. What was the response from that like? How did people receive you?

Eileen:
Well, I mean, it was nice and that's nice. There was a lot of backlash once I started getting more and more followers and that's when I started just having to like block people, because honestly, I couldn't take it. So it was just the same comments over and over again. If I mention ABA, I would get the answer. The comments here, I'm abusing your child And

Eileen:
It seemed like anything I posted was always going to attract people from the diversity movement. I'm not even against neurodiversity. I'll put that out there, I was just against the bullying that's associated with it. But every time I posted something, people will come to my post and starts harassing me. I've had some famous ones, i don't like that word, but like, you know, big people in the neurodiversity movement, like call my managers to complain about me asking how much money I was making from exploiting my child of like a blog, full blog post written about me. Memes made about me have been threatened by CPS. I mean, death threats. Anything you can imagine? I mean, I have a folder was like almost a thousand screenshots from from these people and I'm not even taking a screenshot every time. Just when I think about it, you know, it's just ridiculous. And after a while I started getting, like, desensitized, said is that the word, don't affect me that much anymore. It just like annoys me. And I feel like the more the years go by and the more. More and more people are joining this movement, I guess, and so now I just like I don't even try and interact or anything. I just block them and I get a lot of shit for that, too, because, like, I'm silencing autistic adults, but it's just like there is no winning whatever I do. So, yeah, that's just what I do now, because honestly, I've heard it all. I don't think someone's going to be able to bring a new insult to my page that I haven't heard before or new like arguments about conversion therapy or i'm an abusive mother. I don't deserve my kid. My kids are going to grow up to hate me. I have internalized ableism. I mean, all of that. Oh, yes. Someone did tell me that I was faking being autistic. So I posted my diagnosis, official diagnosis online. And then they said, oh, well, she diagnosed you with high functioning autism. So clearly she's a fraud just like you. So there is no winning.

Cat:
You made a really beautiful point. I think the other day that was I was kind of going through some of your Tiktok, and I thought it was like an incredible way to frame it where you were talking about the difference between identity, first language and person first language. And the whole person with autism versus I'm autistic, right, as an identity. Could you explain a little bit because you made a really important and in my opinion, like. Much needed point about the difference between what happens when you're looking at autism as an identity versus when you're looking at it as a disability.

Eileen:
Yeah, to me, I mean, it can be both, but I think we can never forget that autism is a disability. And the thing that really confused me about people who said that autism is an identity to them, just an identity, because there are a lot of these people is then. Why I mean, because a lot of them are self diagnosed. Why do you think you have autism then? Because to be autistic, it needs to be disabling. You know, it's a disability. So if it doesn't affect you, affects you in a way that makes it a disability, then it's not autism because there are a lot of struggles that are similar to autism but are not. And I think that's that's why I really wanted to go through a very extensive therapeutic assessment, because I knew there are so many things that could be autism in me. I wanted to be to be sure, you know. So when people tell me it's an identity, it confuses me if you say it's both because you're proud of being autistic and all of that, OK, but it cannot not be a disability or else you're not autistic to me, you know, because you cannot be autistic if it's not disabling.

Eileen:
And that's where I get really confused. And that's what I really wanted to talk about. And also, there are so many people for whom. They will never even be able to decide whether it's an identity or disability or both, because for some autism is that severe that they'll never have the luxury of being able to advocate on social media, self advocate and and tell us what they think and this part of the autism community is forgotten. We talk about people who are non-verbal, nonspeaking and can like type or communicate, but we don't talk about those who can't communicate. The comment I always see is everyone can communicate. And that is not true. It's just not true.There are Autistic adults who can't type or communicate with sign language or AAC, they just can't communicate at all. Like this is a truth that people forget. And I love hearing those success stories of people who can't can talk but can communicate in another way. But there are also so many autistic who can't do either, and we cannot forget about them.

Cat:
Yeah, and I feel like that narrative gets- it is, it is- a matter of erasure, you know, that. It's like that it's it's still it's strange to me that like that Neurodivergent community talking point cannot acknowledge the fact that that is still ableist in the fact that the expectation is that there will still be capability and ability where they say, you know, eventually if you give this person, this disabled child enough resources that they can get to the point of this. But it's like, well, then you're still equating their worth and their value in the future with their ability to be able to communicate. And what happens when that's not a possibility? Then what you know, and then it's like, oh, that doesn't fit the narrative, so then we just leave that out of the narrative at this point, I guess. Which then alienates a massive portion of autistic people. And it's really dehumanizing. And I know I'm not telling you anything you don't already deeply understand or know. It's just a very it's a very frustrating and cyclical and circular. It's talking in circles that is in no way productive, which I guess like. Leads me into that question where it's like, where do you think do you think there's a point of reconciliation between, like the neurodiversity movement and where it's headed and then like parents and care workers and support systems of autistic individuals and disabled in which individuals. Do you think there is a point of reconciliation or what what would it take, do you think, to bring those communities together?

Eileen:
I think maybe if we had like some I mean, some very political, but maybe some representatives on each side who would be able to have a conversation without insulting each other and, you know, to actually come together to an agreement. So like people who are middle of the road, who are not too- and it's hard to put emotions aside like that, something I struggle with, too. But yeah, I think if we had some people like leading the way and it's hard because no one can speak for an entire community or I don't even like that word. These are like side in the community, but I feel like we would need to have some people. Talking on behalf of each one, I use the word side in a respectful way because right now it's just like yelling. It's just like. And, you know, I'll put that out there, like the neurodiversity movement that they do, that thing where the pus gets shared in a group of like autism moms, as they call them, and then they all attack. You know, it's like it gets shared just so everyone can attack, attack, attack. And this is so unhealthy. And I feel like if they only had, like, one person comments their point of view, maybe like the mom would not feel like.

Eileen:
So I attacked and harassed that we might actually listen. You know, it wouldn't feel so awful because it is terrible to be getting those comments. I mean, like, if you are we are at that conversation, like four years ago, I would have told you, like, this is like horrible and, you know, afraid to be crying. I, I just feel for those parents so much because a lot of them. They experience it for the first time and daddy don't even know it was like it existed, that movement, you know, and it's very out of the blue and it's very intense. So if we could let Tony down and make it, you can express your opinion. It's OK that we don't all agree. Of course, we're not going to all agree. But it's the dog pil ing. That's what I think needs to stop because it's just not getting your point across and it makes other people feel bad. So, yeah, one person at a time. I feel like we need a stricture almost like a court kind of thing where the mediation

Malia:
Dog piling happens like. What is shared to a group, and they're like, hey, look what's happening here, everybody go to this post, they're not doing that to have a conversation. You know, they're doing that just to keep repeating whatever points that they all agree on that they believe to be true. And it's usually a point that they believe to be true and that there are no other answers, that there's no gray area there, that it's not a discussion, that it's just you. No, you're wrong. And this is how it is. And you either take the post down or you apologize to every single one of us who has this trauma that you don't know of because it's the Internet and you don't know us, but you know, it's now or just fade out into the abyss. Like, how does that make sense?

Eileen:
That's right. Oh, my God. And during April awareness months that happened so much because like so many people were trying to do the right thing and sure about autism and they would use like the puzzle office or like, say, autism awareness or use the color blue. And then they would be like hundreds. When I was saying dozens of comments telling them about Ebola is there where and how horrible, like the use of the color blue or the puzzle piece was and stuff like this, people are trying to do the right thing. They're on our side using like my duck painting on them, you know, and actually it works sometimes because and that's the sad thing, is that they felt guilty, you know, having all of these people take them and they say we re autistic. I seem to speak for the entire community when they're like so many autistic who first don't agree with them and so many more. Who don't even have a voice on social media because like we were saying before, that can't communicate, you know, and think about 30 percent of the autistic community is nonverbal or nonspeaking and can't communicate. That's a lot. And then there are those who don't have social media, those who don't give a shit about that and those who don't agree with them. So really like they're saying we. But what is we? What's the percentage? And then they're going to give you like some polls from their group groups who don't know any difference of opinion. You cannot say the word ABA. I mean, so all of those supposed to be. Yes, because, you know, they're only accepting the same opinion as theirs. So, yeah, I forget the question you're

Cat:
Asking in their face- They're asking in their Facebook groups. Right.

Eileen:
And then they use it as like science evidence. You know,

Cat:
You bring up ABA. And that's something that I wanted to ask you about, because I know that you talk about your son and his experience with ABBA on your Instagram and a little bit on Tiktok. Can you explain to us what you wish people would understand about what your son is in as ABBA?

Eileen:
I you know, when I first heard about ABBA, first of all, I'll make it very clear I've never experienced it firsthand. I think it's important because all of the time people talk about ABA autistic and they haven't experienced it firsthand. You know, I'll I'll say I haven't experienced he's experienced it firsthand hand. That said, my son has been in ABA for six years and I've seen over 1,000 hours of ABA therapy in my home at the center. So right now, what ABA is like? So people said at ABA prevents stimming, which is like the furthest thing from the truth. The worst thing I've seen in ABA that is like remotely close to that is when the therapist prevented my son from lining up his ham instead of eating it because he was like lining up the pieces of ham instead of and I said something. I was like, maybe that's soothing for him, see, if after he does that he eats the ham. And that was it. You know, like all I had to do was speak up. And that's as far as it's been. Preventing my son from stimming, he's always like flapping, jumping. Of course, if it's like, you know, he's harming himself, they're going to stop it. But that's not even. Yeah, I mean, of course, right? That shouldn't even be a question.

Eileen:
Another thing is they say is, is ABA focused on the verbal communication. The first thing that Charlie was PECS, which is the picture exchange of the cards that didn't work out. So what did they do? They tried sign language. Sign language didn't work out because you didn't have the imitation skills. And fine motor, so we switched to AAC. And that worked they taught him AAC, and that's how he's now able to tell us I want plus whatever item you want, I want water, I want Cookie whatever without them, like I wouldn't even have known that existed, you know. And people are probably listening to the speech therapy. Yes. Future speech therapy is like Max three hours a week. Yeah. And that is not enough. And it's really hard if you don't have the training with autistic children like you would need. Very, very. And three hours would not be enough. I mean, three hours is what I get in parent training, basically for them to teach me how to do that with Charlie at home, because it's therapy doesn't stop at the center or during those sessions. Right. And then they said that it's trying to make autistics non autistic, which is so stupid to me because they're trying to teach him life skills like how to get dressed, brush his teeth, a brush.

Eileen:
His teeth program, to not run in the streets, that type of things? I mean, sure, it's changing him, but not because we want him to be normal. We just don't want him to, like, kill himself and do dangerous things. So the way they're twisting it into like something negative when we just want him to be safe and have a good shot at life is what really bothers me. And Same, I'll say, you know what? I did not experience ABA again, and maybe it was different twenty years ago. And I believe the stories of people who had bad therapist and I think ABA does a lot more good than bad. And we can reform it because it's not going away. So we can talk about how to make it better. If there are some things that are, you know, I would say that sometimes it's a bit repetitive because they work on skills and but he still gets like tons of breaks and you play with other kids. But ABA is not going away. So instead of saying trying to cancel it, we need to work on making it better. And that's something we could work on together. You are talking about can we find a middle ground that's one we could easily work on together, make it better,

Cat:
Because it seems like the the narrative right now is to just you know, I hear that going around a lot where it's like just get rid of ABA altogether. But you as a mother know and a lot of people know that, like you said, with like speech therapy, you get X amount of hours a week. You know, with ABA therapy, you get more hours a week that you can have resources for your child, which also helps parental sanity. That is genuinely something that is missing from this narrative because apparently parents are supposed to have unending patience, unending resources and emotional capacity and never run out of steam and always be able to be positive about things. But people don't recognize that those hours are just an hour a day that you get to like breathe for yourself and be yourself is life changing. And taking away the support systems that happen that there's very few of anyway's is actually detrimental and can be dangerous for children and actually leads to a lot more isolation, frustration, and can lead to parents being in desperate situations that could actually endanger autistic children more.

Eileen:
Yeah, no, totally. I mean, I just found the expression the pouring from an empty cup. You can't you can pour for an empty cup, something like that. But like basically you need to to be feeling good if you want to take care of someone else. Right. And met, like, so much more sense, so much sense to me. And it's it's true. Like I feel so much better, like during the weekend, we don't have any help. And it's eyes on Charlie. Twenty twenty four seven He sleeps or else something dangerous or like crazy is going to happen and that takes a toll on you. I mean it does like I'm sure I'm going to get crucified for this, but it just does. And having that time away I mean kids go to school, you know, neurotypical kids. And again they wont bat an eye that they go to school from nine to three. Well that's what he does with ABA therapy. Yeah. So what you learn things that other kids know, but it's the same thing and you get gets more breaks and it gets one on one attention and he gets to play with his friends and it's all like personalized just for him. And like that's frowned upon by I mean, it's just so, so weird to me. But I think. Yeah. What you said about parents needing a break. I am. Words in your mouth, but I think that was the idea of

Malia:
No, we do, we do, well and like what i see is like the Internet is often a lot of parents go to the Internet, often as a last resort to vent or to connect with people when they don't have that ability to connect with somebody in real life, because a lot of them, when they get the diagnosis, a lot of people gravitate away from them. Well, they don't gravitate at all. They move away from them. You know, they they don't it's like the the friendships kind of disappear. Family members start treating the different even friends who stick around and treat you different. Your community looks at you different. It's hard to find new friends and the resources that you have available to you outside of ABA. Like there aren't very many. There really aren't very many. And a lot of them are not accessible. So it's like you don't have a lot of options to fill your cup back up because you're on all the time and it's hard to trust anyone else who doesn't understand. The way that you understand your child, to give them the care that they need so that you might be able to have a break so that you can go shopping by yourself or something like that, you know, just go get groceries by yourself or go like get a background or something like anything when you don't have those things in real life or if you just don't want to, you know, there's something keeping you from those things.

Malia:
You're going to be tired. And once you're in that, it's like impossible. To not be tired and like, you need to connect with people somehow. And so, like, if you don't have that in real life, you're going to go on the Internet and you're going to find people, but then people are going to find you so and then make all these assumptions about you and not even want to get to not even want to talk to you first or be like, hey, I can see that you you said this thing and a lot of people take issue with that. I don't believe in tone policing, but there's there's never even there's rarely an opportunity for conversation about these things. So people are piling on these parents who are already just like beyond. Beyond tired, like tired, sounds cute and exhausted, yeah. And then you go to the Internet and these people are dog piling you and you're just like, you know, feeling like, wow, I thought that I find someone to listen to me. And now I'm just like, wow, I'm just going to go back to my corner.

Eileen:
Yeah. And there are things that we don't even talk about because, you know, I also try to respect my son's privacy. And there are things that I so want to talk about because I'm like I just want someone to relate. But I also know, like, it's crossing your line if I share, like, the details on on social media and and yeah, I have someone tell me I shared very vague videos are they not know details. And the person was like, well, you should see a therapist. This is not the place to share your darkest secrets about autism. And all I said was, I'm tired basically

Cat:
Bold of you to assume those are my darkest secrets about this...

Eileen:
If you only knew, dude. But I have a therapist and, you know, what's one hour a week? Again, that's not enough. And I still want to talk to people who get it, who did the same thing as me, like many of my friends don't, not even my friends, people on the Internet that I can relate. You know, we just feel less alone if we can talk to each other, like, why is that a bad thing? You know, we're not like in a group like hatting on our kids saying "oh, i hate him", like no we're just like tired moms and that should be okay. Yeah. I'm so annoyed about the way people treat the sharing of feelings. It's so hard for me to be vulnerable. And it's something I'm like really pushing for because I feel like there is such a stigma around vulnerability and it shouldn't be because we're human and that's how we connect. You know, we strive to connect with other people, yet we put that barrier between us and the rest of the world by not sharing. And that's just sad. And the more people share, the more normal it becomes. And we get to break that circle of not sharing.

Malia:
Well, then I wonder like. Because people see that parents are tired, like this parent is tired. So they must be they must not be caring for their child properly. Can we give people the benefit of the doubt, at least sometimes when we don't have evidence.

Cat:
And most parents are not going to snap in some over the top really horrific way. But there are parents who are one click away from hitting, as Robin said one time, like hitting add to cart for a very potentially dangerous treatments for autism. And when they get alienated further, those things start to sound a lot nicer where someone's like, oh, well, if you go on this particular regimen, then like, you know it all your autism will be gone in three weeks, you know, or your kid will start speaking again or whatever. And there's no science to back these things. It is completely it's complete quackery. And then if you keep pushing parents to these points of isolation where they can't get common practical resources or connections with people, that could be like, you know what, I'll pick your kid up today. You know what? I will you go have a date night or I know this great therapist that can do this and you cut people off from those resources. Getting rid of autism sounds a lot more appetizing than being isolated alone, made fun of harassed, all those kinds of things, like it pushes people to a very scary mental place sometimes. And instead of looking at all of those things, people would rather just be like, oh, it's all moms. It is just because they were a horrible, negligent mom. And it's like you have no idea what it takes to push people to the point where they break and nobody wants to have that conversation.

Eileen:
Yeah, I, I think people don't realize the impact that the bullying is on the parents. At least once a year. I get messages from parents telling me something along the lines of I was ready to take my life and then I, I found your blog and I just didn't feel alone anymore. I'm not kidding is just so like five, six of these messages I received over the past year. And, you know, it's it's nice to hear. But at the same time, it's so heartbreaking because you can feel the pain. And I know exactly where it's coming from. It's from like feeling that. Well, no one feels that way about autism because we don't talk about the negative aspect, because we're afraid, we're afraid because we've been bullied into silence. So many people have, you know, they don't have the mental space to deal with bullying on top of dealing with their feelings and helping their children. And that is just horrible. I mean, during the worst of the harassment for me, in 2019, I, I, I've never felt so depressed. I had to make three appointments with my therapist during that one week because I was just completely I, I don't know, I've never felt that way before.

Eileen:
Like a dark place. I understand the expression dark. I just felt like everything was dark around me and you don't know what to do anymore. I felt like completely like out of control at the same time, like numb. It was horrible. I thought the entire world hated me, hated me. I didn't want to talk to like the people in my in my life or if they were there, I said they were not doing enough. It was just like impact the impact on my on my life, all because of those online comments that were coming. And blogging is my work, too, in a way. Sometimes I get jobs there. And it was at a time when I had some jobs, you know, what's going on on on Instagram. And they were just like slamming me on those ads. And I had a ton of comments on those posts, too. And it was like impacting my work and like I said, contacting my manager. And it's just it's too far. Like we can have a difference of opinion, but if you're, like, harassing people to the point they're like depressed and thinking about suicide and all of that is just that's not OK.

Cat:
That's so scary. And so so so I can only imagine how dark that must feel and how long that must feel.

Malia:
Like, what if you had lost your job.

Cat:
Yeah. Yeah.

Malia:
How do you provide for this child.

Cat:
Yeah.

Malia:
That they're saying that you ...You know like?

Eileen:
Well, yeah. And shouldn't they be proud of me as an autistic person for being able to find a job I can do at home because I can't work outside of the house. You know, I'm autistic too, i'm thirty one. I've never worked outside of the house. I can't. And it took me a very long time to be able to provide for my family and be able to work from home. And I feel like if it was an autistic on their side, they would have been proud of them. But because it's me expressing my kids or autism or whatever, you know, that's not right.

Cat:
That doesn't extend to you cause you don't toe the party line.

Malia:
So, I mean, like, OK, so we talk a little bit about, you know, the fact that there are not a lot of services like for autistic kids, but like there also don't seem to be a lot of support options for autistic parents. So what kind of supports do you feel like autistic parents need or autism parents?

Eileen:
Well, I can speak from my experience as a mother. What I would need more of is, first of all, I feel like therapy should be free for parents of autistic children because like, I feel like kids that I can go to therapy. But I know not everyone can afford it to find like a good therapist, someone that understands autism and being an autism parent or autistic. So first of all, that should be part of the package when you get an autism diagnosis and also help like during the weekend, like just like we talked about like maybe once or twice a month, autism parents get like two hours to go on a date nights or something like that. You know, I feel like that would be very achievable. That would be such a nice thing to do. You know, that's what we need more of. And on social media, something that everyone can do is cut people some slack because. Oh, my God, like, you have no idea what it's like to be that person behind the screen, because all you see is what those people share, what they choose to share. But you don't see their life. You don't know what it's like to be there. You don't know their kid. And just because you might share a diagnosis with their kid doesn't mean you know them better than the parents, doesn't mean that you can't insult them. And that's not right. You you cannot do to to people through autism parents what you don't want people to do to you, which is bullying. That's not how it works. And also that's not how you get people to to listen to you. I think the neurodiversity movement has some good points, but I don't even wanna listen anymore because of the way they speak to people. And I don't think saying that you have to be autistic. So we don't I'm not good at communicating is is a good excuse because, like, that's. Way beyond the not understanding that saying someone that should have CPS call on them or that abuse is

Cat:
That's, not a problem of tone.

Eileen:
No, it's not like that's far beyond that. I say yes. And that's what parents need. Cut them some slack. And if we're talking about more like government stuff, maybe that night a month for autism parents and some free therapy.

Cat:
That sounds great. Well, we really appreciate your point of view, Eileen. And I know it's been a very it's been a long and successful for you, like spite despite all of this and all of this sort of like stuff that you've had to put up with over the years and the harassment and the targeted campaigns and and the bullying and stuff. And and not that I want to minimize what you've been through, but you're still standing and you're you're here saying things that actually need to be heard by the Neurodivergent community because, you know, it's both sides can become an echo chamber where it's like the autism moms can get in and their little world where that's all they're hearing. And then the Neurodivergent community does the same. And so there is no room for a crossover of ideas that makes sense, like a common sense middle ground and sharing all these ideas. Because I think that, like a lot of I think honestly, like a lot of the flack that you get a lot of the cut back, like the flashbacks that you get, I think one are heavily misogynistic, too, are heavily ablest and three are because you're saying things that make sense. You're saying things that people don't want to talk about, because like we said a million times on this episode, it doesn't fit this narrative of the fact that, like, we can overcome everything. Well, you know what? Some of us can't and some of us won't. And the fact that that is the expectation is implicit in of itself. And I think that you're poking at sore spots and and holes in logic that the need diversity movement has not like they can't they can't ignore those issues, but they don't have an answer to them because they.

Cat:
They that would mean they would have to recognize. The ableism within the neurodiversity movement, and I think your irony and the irony, that's it, right. And the hypocrisy, because the thing is like I think I think that you're asking questions, you're making points and you're poking these areas that that clearly point out, like you said, the hypocrisy and the need for growth and work within the neurodiversity movement. And I'm here for it. And I appreciate you being as open and honest with us and having this discussion, because I know that your experiences in the past have been really awful and that it's it must be hard to open up in a lot of ways and not know what's going to come your way after the fact. But please do know that, like, especially speaking for myself, like I support you, I see what you're doing. I think that you're making a lot of important points. And I think the narrative is is slowly changing in the more of us that like we have these crossover talks and go like you need to start thinking, like people need to think, you know, that I think that we can actually make that progress. And I really appreciate you being a part of the start of these conversations and being willing to sit down and talk with us, because I think we can shift the narrative. And I think that you're you're a big part of helping start that.

Eileen:
Thank you for having me. It was so great to speak with you. And it's nice to hear that I'm not crazy. So thank you for that.

Malia:
Thank you for tuning in this week, we hope you had as much fun listening to this episode as we had making it. For more information and resources, please visit auteach.com. That's a u t e a c h dot com and join our mailing list to stay in the loop about updates and events. We look forward to bringing you a new episode next week. Until then, this has been the Autistic Tea Party.

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