January 19, 2024 • 59 mins
In this episode of My Time, host Tony Hernandez Pumarejo had the honor and privilege of interviewing Eileen Lamb!
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. She is also the director of social media for Autism Speaks. Born in France, Eileen now lives in Austin, Texas, with her two sons, Charlie, and Jude, and their sister, Billie. On her blog, she shares the ups and downs of raising two autistic children, one with profound autism, while being on the autism spectrum herself.
Don’t miss this very special episode!
Eileen Lamb's website and social media:
WEBSITE AND SOCIAL MEDIA:
Website: https://theautismcafe.com/
Facebook: https://www.facebook.com/theautismcafe
Instagram: https://www.instagram.com/theautismcafe
Tik Tok: https://www.tiktok.com/@eileen.lamb?lang=en
LinkedIn: https://www.linkedin.com/in/eileen-lamb3/
CREDITS:
Luis Duprey and Brandon Duprey - Editing and Production Team
Their website: https://www.etsy.com/shop/VEXIbyLGKDesigns
Contact: https://www.facebook.com/LuisCapriDuprey
Luis and Branding also are starting the Media portions of the Biz The Media Part is- Vexi Fusion Media The name of the Etsy store is Vexi by LogoKidd Designs.
That will eventually change to Vexi Fusion.
Email:vexifusion@gmail.com
Phone: 407-692-2240
No Copyright Music: Bam Bam by Infraction.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
So I respect the fact that what works for me doesn't work for other people
(00:06):
But I also want to accept that I'm being harassed because people don't like what works for me
Like, this is the thing that's really difficult in the autism community
That people are trying to make it that we're one voice
(00:49):
Hi and welcome to this new episode of My Time with Tony Hernandez Pumarejo
And this is your host, Tony Hernandez Pumarejo
(01:10):
I'm truly honored and privileged to have you here today
Either watching me or listening to me in this new episode
And today we're going to have the honor and privilege of interviewing Miss Eileen Lim
Eileen is an autistic self advocate and also a parent to her autistic children
She's the author of the books called All Across the Spectrum and Be the One
(01:35):
And she's the founder of the Autism Cafe
Eileen is also a writer, photographer and podcast host
And she's also the director of social media for Autism Speaks
Born in France, Eileen now lives in Austin, Texas with her two sons, Charlie and Jude
And their sister, Billy
On her blog, she shares the ups and downs of raising two autistic children
(01:59):
One with profound autism, while being on the autism spectrum herself
So, you know, her story is very inspirational
And she has been a strong advocate for our community
So without further ado, let's go to the interview that I had with Miss Eileen Lim
Of the Autism Cafe
It is my honor and privilege to have you here today, Eileen
(02:20):
Thank you so much for coming in today in my time with Toni Hernandez-Pumarajo
Yeah, of course. Thank you for having me, Toni
Thank you
It is an honor and privilege to have you, Eileen
Your story is very inspirational
It's a story that, you know, as a parent and yourself also being autistic
I mean, I'm going to ask you
(02:41):
But with you being an advocate, being a parent to your three children
You know, being an entrepreneur, an author, a writer, you know, employee
My question is, how do you do all of this?
I mean, what helps you to overcome so much, you know, so many tasks on your daily life?
And how do you do that?
(03:03):
You know, it's all about balance
And all of these things, they don't happen at the same time, you know
Because I'm working when my kids are at school, for instance
And I'm writing when my kids are asleep
And so there is like a time for everything
And I feel like everything fits perfectly into my life
And you can see that there is a common theme into everything I do
(03:27):
I feel like everything has a link to autism
You know, I work at Autism Speaks as the director of social media
Because, of course, as an autistic mother to two autistic children
I mean, autism is like such a big part of my life
So I don't think I could work somewhere that doesn't have a, you know, autism connection
(03:48):
So even though it's my job, it feels like, I don't know, it doesn't feel like I'm working
Because you know what they say, you don't work a day in your life
If you're working doing something that you love
And I love advocating for autistic people in our community
So for me, it's really great
You know, the kids are at school, well, my youngest, Julie, is at school
(04:11):
And not my youngest, he's my middle child now
See, my baby is one and I still call my middle child my youngest
Because I'm not used to having three children yet
But school and, you know, Charlie's in therapy, all that
So it gives me time to do those things I love
And I love working, I guess
(04:32):
And then when the kids go to sleep, I just, I write
And that's how I was able to write those two books
Yeah, you know, you do so much
You know, I'm very proud of what you do
Your story is very inspirational
You know, I believe and this is, you know, that our community is in debt with you
Because you have different perspectives
(04:52):
You as an autistic self-advocate, as an autistic parent, a parent, an entrepreneur, a leader
For our community, your perspective is very valuable
And I'm also proud to call you my colleague, you know, working with Autism Speaks
So we have done great things together and, you know, Eileen, I ask, you know, this next question
(05:13):
I'm going to ask you, I ask everybody, you know, in my podcast
I ask you, you know, how do you define the life of Eileen Lamb in just a few words?
If I have to use just a few words
I'm a passionate advocate for the autism community
(05:34):
And also a mother and a writer and someone who just pours her heart into everything she does
That's it, you know, and that's what it is
You know, the story of Eileen Lamb
If people ask me, you know, what's the story of Eileen Lamb?
(05:55):
And they tell me to define it in this case one word
I would call it perseverance
You're a very perseverant individual, you know, working with so many things, you know, in the community
Personal life, work, balance, parent
I mean, you have to do so many things
And I think the perseverance is the best quality that I can describe Eileen Lamb
And Eileen, you know, let's, you know, about this amazing story
(06:16):
Let's go back from the beginning
Let's talk about how it all started
About yourself, your childhood, where you come from
And tell us about your life as you were growing up
Yeah, for sure
So I was born and raised in France
That's why you hear an accent
And, you know, I had a good childhood
(06:39):
But there were a lot of things that didn't come easy to me
I always felt like I was on another planet
Like I could never really fit in with my peers
It was always really strange to look at the kids around me
And feel like I was missing something, you know
(07:00):
It's like I couldn't quite understand what
Why these things were important to them and not to me
Why they were laughing at me and not with me
And it was interesting, you know
I only really got along with people when we shared the same interests
(07:23):
Because then I could go all in and tell them all about it
And, you know, it was just like
But so, you know, my life in France, my childhood
It was a mix of...
And that's all I ever knew
So I didn't even know it was not a normal experience
You know what I mean?
Because you don't know what you don't know, right?
(07:46):
So if people don't tell you that they don't feel the same way you do
I mean, you're not just going to assume that they're feeling differently than you
I was thinking that, oh, well, everyone is probably feeling the same way
To a certain extent
But really when I grew up
(08:07):
And when I reached like 15, 16 when I was a teenager
And everyone was enjoying things again that I just couldn't enjoy
Like going to concerts, that was like so big
You know, parties
And, you know, I liked parties all right
But I had to...
And, you know, I'm opening up here
(08:28):
I couldn't socialize unless I had a drink or two before
Like I needed something to be able to interact with people
I couldn't go to like the fireworks
Like that's a big thing in France on the July 14th
Because that's the national day in France, Bastille Day as you call it here
(08:49):
And I remember like for a few years
Like a few years in a row trying to like go with everybody
And I just couldn't do it, you know
And I think that's a story I mentioned a lot
Because it was really shocking to me to see everyone like so, so like happy about like
Oh yeah, we're gonna go see the fireworks
(09:10):
And like they love like being in the crowd and the noise and the lights
And I'm just like...
I couldn't even like, you know
I was like thinking about it two weeks before
Having anxiety and trying to work myself up to it
And I just couldn't do it
So anyway, there are a lot of ways in my life
Where I just felt like I didn't fit in
(09:32):
Yeah, and you know
There was some bullying too
Which we can get into later
But so that was my life
Not, you know, neutral
Not super happy, not bad
But I definitely felt different from a young age
And that's very common
I mean, with many different stories in our autism
(09:55):
You know, not only autism
All sorts of, you know, disability, community
In this case of autism that
You know, you feel that there was something different about you
Even though you don't know what it exactly was
At what age were you diagnosed with autism?
So I was 25
It's only until I came to the US
(10:16):
And that my oldest son was diagnosed
That I put the pieces together
Okay, so that's where it was a confirmation
In terms of what it was
And going, you know, you went through that transition
Moving from not only a country
But also a continent
You know, as well to the US
You know, being born and raised in, you know
(10:37):
In a different country, in this case, France
Before you moved to the US
Or did you have some conceptions about the US
Before you moved in?
And how did it change after you moved to the US?
Especially moving to Austin and Texas
You know, it's funny because
I feel like a lot of people, especially in France
(11:00):
Like when they think about America and the United States
They just kind of like make fun of it
Oh yeah, you know, all the burgers and like all the seafood
And you know, they have like a lot of
Judgments about it
And to me
And I grew up watching TV shows
(11:20):
And I were like, oh, in America
You know, like
How is it called in America?
Seven heavens, I think is what you call it
It's like, oh, that's family with all the kids
And you know, like seeing the yellow school bus
And like all of these kids
And it seemed like accepting
And they had like cool things we didn't have in France
(11:43):
And I don't know, the yellow bus to me was something that's
I was like one day I'm going to ride that yellow bus
Never happened, but
Anyway, so I had like
I've always like really seen America's
You know, the American dream
Which a lot of people also do
(12:03):
It's not all like the negative
And I wasn't happy in France
By the time I reached like 20, 21
You know, I kept losing all of my friendships
I didn't understand why
It just, I couldn't get my, you know
I had gotten my high school degree
Couldn't get a degree past that
(12:25):
Because every time I try going to the university
I would just have a meltdown
Because there were too many people
And again, I didn't know why
I was just like, you know, what is wrong with me?
You know, it's not like I can't have like a beer at seven in the morning
Like before going to class, you know, that's just
So I just stopped going
And I had nothing going on in my life
Except, you know, I was playing online poker
(12:47):
The game, Texas All Dem
And so that was what I was doing
I was earning money doing that
But it's like, that's not life
You know, I'm not gonna, I mean, that could be life
But I knew it wasn't realistic
I wasn't gonna be a professional poker player
So anyway, I looked into ways to go to the United States
You know, on a visa
(13:09):
And the one way was to be an au pair
Which is like a nanny taking care of a kid
So that's what I did
And I found a family in Austin, Texas
And I kid you not, after one day here
I had never felt that in my heart
Like I had never felt this good
And I didn't even speak the language yet
(13:31):
You know, except like, hi, how are you?
Like very basic language
But everyone was like smiling
Like I was walking down the street
And people were saying hi to me
And it was just like the weirdest
But in a good way, like experience, you know
I felt like I was accepted
Like no one cared how I was like dressed
Or how I behaved
(13:52):
It was just like, I felt accepted like right away
And it was just like mind-blowing to me
And well, it's no surprise that 12 years later
I'm still here, yeah
That's very interesting
You know, it turns out your perspective
And how you look at things
How your life was going before coming to the US
(14:15):
And how your perspective and view involved
Moving after, you know, after moving to the US
And it's very interesting because this is the topic
I wanted to talk to you about because
You know, not only, you know
It's not only autism specific
But there's always a comparing contrast between countries
For example, Europe has better healthcare than here
Or it's better than this area than here
(14:36):
And I think it's very important to realize that
Europe is a continent and there's differences between the countries
For example, not going back to autism the other day
I was just, I was sending letters
I was sending proposals to autism organizations
And special needs organizations around the world
And it was very interesting to see the number of organizations per country
(15:01):
In terms of a ratio, you know
How many organizations were in this country compared to this
For example, and I'm going to use your home country, France
You know, when I was doing research in France
I didn't see too many autism or special needs organizations in France
In comparison, for example, to Spain
Which, you know, neighboring countries
(15:23):
I saw that Spain has more
And I can tell you from this from experience because
I've been to Europe one time and that was when I went to Spain
Because my brother lives in Spain
And I went to this autism organization when I was there
But the highest, the very high number of autism organizations in Spain
In comparison to France is very interesting
(15:44):
And I know that there's been talk about in terms of, you know, in other countries
Not only France, but other countries
You know, they look autism or special needs as something more of a burden still
They have that mindset that was like, you know, pre-age mindset about autism
And I want to talk to you about, you know, as you grew up in France
(16:07):
And I know you're the best person to share this with us
What was some of the challenges or stigmas
The special needs families face in your home country?
Can you go in detail about those challenges?
And if it's possible, compare and contrast in terms of services in France to those in the US
Yeah, I mean, and I think like a lot of people are going to be surprised
(16:30):
But if you have an autistic child, you don't want to be in France
You know, like people think of France as, oh, wow, universal health care
Well, did you know that's like in my hometown, like it takes a year to get an appointment just to get like an eye exam?
Yeah, it's like that was an article in the newspaper in my hometown like last week
(16:54):
Did you know that only 20% of autistic kids have access to appropriate education in France?
Most of them like, you know, are not in school
And, you know, ABA therapy, for instance, there are only, I don't want to say a number
But there you can count on two hands the number of ABA centers in France
(17:18):
We're talking about a country just in Austin, Texas, where I live
I think we probably have like 20, 25, probably more. I'm not even counting anymore, you know
And not only that, but most of the time in France, insurance doesn't cover therapy
So great you have free health care, like if you have a cold
(17:40):
But if you have a child with autism, you're going to be paying out of pocket, you know, for everything
And you're going to be struggling to get services because the waiting lists are insane
Which, you know, it's an issue in the US too, to a lesser extent
But in France, getting care, I mean, from what I've heard from people who follow me
It is horrible and things are changing, but very, very slowly
(18:04):
I mean, just autism diagnosis in France, you know, it's still like, I don't know the exact stats
I'm not going to say about like in the US, we're one in 36 children being diagnosed with autism
I know that just a few years ago, it was one over 200 in France
And I think they're in the hundreds now, so it's getting better
(18:26):
Again, don't get me wrong, but there is a long, long, long way to go
When I was growing up, again, I didn't know I was on the spectrum
Even though I was a textbook autistic child, I mean, it's pretty funny looking back on it
But I was diagnosed as, and it's not even a diagnosis because my mom took me to some specialist
(18:50):
And they said, well, she's shy and she's gifted
It's like, what does this tell you now you say that?
Like, don't you think like Asperger's like right away?
You know, like the pieces were there, I learned to read when I was three, read and write
Which was like hyperlexia
And, you know, they just put a bunch of like, they had explanations for everything
(19:15):
You know, none of it was autism
And I just feel like nowadays I would have been diagnosed like, you know, no problem
And, you know, maybe even in the US back then in the 90s
I wouldn't have been diagnosed because there's been not just in France, you know, but here too
Diagnosis criteria, especially for girls has become, you know, not different
(19:40):
But people, doctors know more about autism in girls and all of that
But another thing about France and the stigma is that for instance
I, so I had therapy as a teenager, I went to therapy on my own
I made that decision because like I said, it was like, why am I losing all of my friendships?
Why do I feel so different?
(20:02):
And there is such a stigma around mental health that I would put a hoodie on my head when I entered the building
To go to therapy because people make fun of you because only crazy people go to therapy
That's what people think in France, not all of the people
(20:26):
But there is a big stigma around that and mental health
Again, I think it's getting better, but it's still not there
Even like recently, a politician, very famous politician in France said something like
Well, I heard them, I'm not autistic in a speech
(20:48):
And I was like, what, five, six years ago?
I mean, there are just so many things that are wrong about France and autism
So many families were trying to move even like to Belgium, Switzerland
A lot of them are trying to move to the US, but you don't get a visa like that
(21:09):
It's really difficult to move to a different country, to the US when you're from Europe
Yeah, it's just bad
Yeah, we pay for insurance here a lot, but Charlie gets 40 hours a week of ABA therapy
(21:31):
40 hours, it's just like, well, so we get insurance, you and I through Autism Speaks
Which we pay for monthly, I mean, Charlie is on my insurance and I pay nothing for ABA
I just pay for the insurance, right? And that's 40 hours a week
(21:52):
And I think that's just like, that's incredible
And you know, I'm struggling with the school district with Charlie, but at the same time, he's at school
And at least, you know, I can fight
I'm just like fighting for more for him, but in France, we don't even be at school
And there is no law that makes that he has to go to school
(22:13):
So at least here I have something to fight for, in France, I would have nothing, you know
And the one time I went back to France since moving to the US, which was 2015, yes, 2014
I haven't been to France in almost 10 years, yeah
See how I feel about France
Charlie was having a meltdown, he was like one and a half, he hadn't been diagnosed yet
(22:38):
And the guy walks by and says, well, like, this child is so rude and he needs like better parenting
Seriously, like, I've been in the US for like, what, 12 years now
And Charlie has had a lot of meltdowns and yeah, you know, some people stare and look
(22:59):
But no one has ever said anything that rude
And I was just like one week of my life since becoming a parent in France and I got that rude comment
So yeah, there it is
I feel like I just like ranted about France so much
People are going to think I hate France a little bit, but you know, not that much
Well, I'm interested in visiting France, so just to see how it is
(23:24):
But it's very interesting and your perspective is very valuable because you've been there
You were born and raised there
It's not like you go to, let's say Reddit and say, oh, go to France or go to this page
Everything is wonderful, healthcare, housing, social services, education
But one thing is on the forums and another thing is in reality when you go there
(23:46):
Obviously everything is case by case
And as I mentioned, you know, we have the continents
Europe is not the same
There's different, you know, countries have differences, cultures, systems
Here in the, even the US here
You know, the different, the states are not all the same
Some states have more services than others
And not only that, another area that I think we need to, which we focus on more is in terms of the comparison of services
(24:10):
Between metro areas and rural areas
Recently I did an article on my blog, which I talk about, for example
The challenges that Hispanic families, that have loved ones on the spectrum face in rural areas
Comparing contrast to metro areas, let's say Florida, California, Texas, New York, for example
(24:32):
So I think that, you know, most, you know, obviously the consensus here is that if you're in the metro area
There's a higher chance you will get the services that you need
But if you're in a rural area, then unfortunately, sadly, it's going to be super difficult to get services
And so it's very interesting, you know, from your perspective and your experience being in a different country
How things work there so far
(24:55):
And it's great, and you mentioned something very important as well, is the stigma, especially with mental health
Mental health is something that unfortunately there's still a lot of stigma everywhere
And there's some that's an area that we need to work on as a society because mental health is real
Mental health crisis is real, there's no stigma, there's no faking it, it's real
(25:16):
And I very appreciate you sharing that perspective, Eileen
So now from France, we're going to transfer to the U.S. so we won't speak about French anymore
Let's go to the good old USA, let's talk about now you as a parent
Just wanted to confirm, at what age was Charlie diagnosed with autism?
(25:39):
And also your son, Jude
Charlie was 22 months old and Jude was 5
Okay, and if you can share with us a little bit about your experiences, especially with both of them
How you navigated their evaluation, diagnosis, intervention
(26:00):
And what was the difference in terms of experience, you know, raising and helping Charlie and also helping Jude
What were some similarities and also some differences, if you can share that with us
Yeah, I mean, so Charlie was diagnosed first, Charlie's my 10 year old
He was diagnosed when he was 22 months old, he started losing his words when he was 18 months
(26:26):
And you know, I was a first time mom and I was speaking French and English to him
And I was like, well, maybe it's just a bilingual thing
Like it's harder for him to, you know, pick up on language, keep it up
But anyway, I took the M-Chat, which is, you know, was the online M-Chat was funded by Autism Speaks
(26:47):
Which something I learned recently is that before the M-Chat, Autism Speaks, you know
Made the M-Chat available online, people had to, you know, fill out the M-Chat questionnaire
Send it in the mail and wait for the results back
That's how it was before, so big kudos to Autism Speaks for that
(27:11):
So the M-Chat, if you don't know, is an online questionnaire, well now it's online
And it asks 20 questions about your child, things your child does or doesn't do
And any score above 3 is a risk for autism, again 20 questions
(27:32):
Charlie scored 18, so we called early intervention, which is free or low cost in every state
Just Google early intervention and your state
And he was evaluated and he qualified for speech therapy, OT, I mean he qualified for everything
(27:55):
He was like so behind, and again I felt bad because as a mom, I didn't know how
You know, he was my first child, I didn't know he was supposed to be pointing
I didn't know he was supposed to be clapping, you know, like these things that of course inside his 2020 now makes sense
So we got a little bit of therapy with ECI, he was like 20 months at that time
(28:19):
But they told me quickly, he needs more, you need to get him evaluated for autism
And you know, we got an appointment with a developmental pediatrician and he was diagnosed at 22 months old with autism
And it's like at that point I wasn't surprised anymore because I had started learning about all of it
(28:42):
They recommended ABA therapy for him, I went up to Google and I was like, oh my god, oh my god, what is going on
We're going to talk about that in just a little bit, about the ABA and the debates
So lots of controversy, but you know, Charlie got ABA therapy, yeah it was just my life's change at that point
(29:07):
And so you know, by the time Jude was Charlie's age, when Jude was around two years old, he was talking but you know not a lot
He had a lot of steaming, a lot of sensory issues and I was a little nervous about what was going on
(29:28):
But he was very social, he has that personality, he's always happy going to people
And you know, he had some special interests, around three years old he started being really interested in math and really good at it
And then by five, it became clear that he wasn't just quirky and it was also autism
(29:52):
But Jude was diagnosed with level one autism, which is probably what you're diagnosed with too Tony?
My back name was Asperger's
Asperger's, which I guess now goes into level one, yeah
And same with me, and then there is Charlie, but Charlie is diagnosed with level three autism
Which now we can call profound autism
(30:13):
And his behaviors are like so severe, he's non-verbal, attentive still
You know, he has something called pica too, which is that he can't help but put non-edible items in his mouth
Recently he swallowed a screw, a surgeon had to get the screw out of his colon
It's just, it feels like almost two different diagnosis to me, so same diagnosis for three of us in my family
(30:41):
But we're also different from each other, you know
Yeah, it is very interesting, you know, and recently, yesterday in fact, I watched the documentary
There was an autism speak about the challenge story, you and Charlie
And I seen through your social media about the challenges with pica, and also what you mentioned earlier
(31:03):
Was about the fight within the school district and fighting for the rights of Charlie
To make sure that he's getting the support that he needs towards the development
And it's not easy, you know, you have to deal with the challenges not only as a parent
But also living on the spectrum at the same time
And as you mentioned, you know, there's three, there's you, Charlie and Jude
(31:26):
Each of you has a different, you know, story and you know, similarities but also, you know, differences
And if you can go, you know, in terms of, and I know it's an ongoing process, you know, what has helped you
You know, both as a parent, as an advocate to work with the challenges
Of not only the challenges that Charlie and Jude has faced, but you have faced as well in this process
(31:49):
What has helped in this process if you can share that
Yeah, for sure. I mean, for Charlie, what's helped the most is ABS or AP
You know, there's like no doubt he got into it when he was two years old
And by the time he was three, they had told him to communicate using an AAC device
(32:12):
And it was just incredible to see him go from like screaming all day
Like no kidding, screaming and screaming because he couldn't communicate, you know
To being able to make himself heard, it was like incredible
And they're still helping him now, you know, like with the PICA
(32:33):
Like no one wants to deal with Charlie because I mean, he's a liability, you know
His behaviors are like so, so, so dangerous and so scary and you know, he's my son, I love him
I can say he's, you know, he's so handful and I can understand why someone
Like would feel scared of like watching him because of how severe his behaviors are
(32:59):
But ABA, you know, they haven't given up on him and they're still trying to teach him
And I'm very thankful for that, you know
For me, it's more about, you know, that was the thing with my diagnosis
It's like I feel like if I had gotten help earlier, a lot of the struggles I went through as a child
I probably wouldn't have if I had known I was on the spectrum
(33:23):
Like that was my, the one thing I regretted when I was diagnosed was
Darn it, it wasn't me, like there was nothing wrong with me
I just was just different, I needed like to be communicated with differently, you know
And I wish I had known that earlier
(33:44):
But now, you know, just like one-on-one therapy for me is great because
I know what to focus on and I know why I struggle with what I struggle with
And with Jude now, I feel like he's the one who's gonna like get the
I don't know, for whom it's gonna be the easiest because now he has my, you know
(34:06):
I've been there, like I know what he struggles and I like just
Earlier, like he didn't want to go to the playground because
There are people, he was afraid of that, you know, and I totally can relate to a lot of
Of his worries and yeah, Jude did some ABA too, but really the thing for him is that
(34:30):
He has a lot of anxiety too, he needs to be challenged, his brain is going
Constantly, he has so much going in his brain and so we had to change school
Because the public school just wasn't working for him either, but for different reasons than Charlie
And yeah, so he's in a private school now and we're just trying to keep him challenged and
(34:55):
Busy, you know, so he doesn't get bored and also so he doesn't get bullied because he dealt with that too
And he was, you know, in first and second grade and I was like, no, he's not gonna go through that
You know, he's just a kid already, like and changing school has really helped with that
The public school, you know, and his teachers were great, but they're so overwhelmed in public school
(35:21):
Like there is only so much they can do, you know, when the school doesn't have the funding and so yeah
Oh, definitely and it's a process, well, this is a process, you know, it's ups and downs in this process
And you have done, you know, a tremendous job under the stress, the pressure in providing the best quality
(35:46):
Of education, you know, not only education, but also in terms of quality of life for your children and your family
And that's the most important thing, it's an ongoing process and you learn from this
And I'm very proud of what you have done and your story again can be a great sample
Of leading example for not only autistics, but also parents as well with special needs children
(36:09):
And Eileen, now, you know, speaking about the wonderful ABA therapy, unfortunately, you know, as you know
There are, you know, there are, you know, there's debates out there in the autism world
About ABA therapy, the first, the third use of language or I don't know, they come with different terms
(36:32):
First, autism, autistic, neurodiversion is like so many terms, then we have the debates of the parents
Against autistics, autistics and real autistics, actual autistics, criticism of organizations
Seeing autism as a disability or superpower, all of this, that you know this very well
(36:54):
My question for you is, you know, today, and I know you're done with this as an advocate
You know, why you think about all of these debates, you know, what has helped you in terms of dealing with these debates
Do you think that these debates are really taking us closer to what I believe should be the mission
(37:16):
In regards to autism, which is quality of life, or this debates are continuous to take us away from that mission
What is your perspective?
Yeah, I mean, that's what keeps me going through all the, you know, social media hate
Because people don't necessarily agree with the things I find helpful for my family, for myself
(37:40):
It's just that it works for me, it works for thousands, hundreds of thousands of other people
So I respect the fact that what works for me doesn't work for other people
But I also won't accept that, you know, I'm being harassed because people don't like what works for me
(38:04):
This is the thing that's really difficult in the autism communities, that people are trying to make it that we're one voice
And it's just not how it works because we're all different people, I mean, just like we've been talking about
You know, like it's three autistic people in my family, and you know, I'm closer to Jude, you know, our struggles than Charlie
(38:27):
But we're still different, you and I, same diagnosis, different struggles, different strengths
And so when people like go on social media and say, well, autistic people hate the puzzle piece
Like, excuse me, no, I mean, I don't, I know lots of people who don't, so like speak for yourself, you know
(38:49):
And people can't do that, they always have to make it, you know, something that it's not
And it's just frustrating, and honestly, I don't know, maybe that's the French in me
But like the more I feel like people are like wrong in a way, like they are coming at me
The more I'm gonna like fight back, you know, it's like the revolution, okay, well, you're trying to silence me
(39:14):
Well, I'm just gonna like shout it louder because there are a lot of people who agree with me
There are a lot of people who are like scared to speak up on social media because you've bullied them into silence
With things that are not true, so now I'm gonna speak louder for those who are like too scared to, you know, take that social media hate
So that's what keeps me going because I know that we're a majority
(39:37):
But that, the other people, they're so vocal that you would think that there are like too many of them
But really, they're just, they're a vocal minority
Because most people, they don't just go on someone's social media and insult them
They don't go and say, wow, you're abusive for putting yourself into therapy
(39:59):
Oh, I'm going to call CPS because your child is having like a cookie, you know
Like these things are just like so, so stupid, right?
I mean, let's call them that
I think it's okay for someone to say, hey, I had a bad experience with an ABS therapist
Totally fine to say
(40:20):
But to say ABS therapy is abusive and to generalize, that's where I draw the line, you know
I think people need to understand that they need to share their personal experience
I'm only speaking for myself right now as one autistic person
I don't pretend to speak on behalf of the entire community and no one should
(40:42):
And I think that's important to remember
Well said, and it's okay to have differences
That's not, you know, in reality, that's not the issue here
It's okay to have differences
It's the way that unfortunately different individuals approach those differences
And go to the insult and the attack and the personal attack unnecessarily
(41:05):
I mean, proclaiming that they speak for everybody, which is completely false
Which is completely BS
I mean, I can only speak for myself too
About my perspective as an autistic person
And also as an advocate and working with this community, parents and autistic individuals
(41:27):
You know, from all parts of the world
And I think that, you know, if we don't take care of those issues
You know, again, pointless attacks, unnecessary attacks
Then we're not, I believe we're not going to go farther in our mission
That's the way I see it
There's been progress, yes, but there's still much more that needs to be done
(41:51):
And, you know, going along these lines, I mean
I also wanted to ask you, you know, because we talk about autism, right?
Social media, your story, my story
And the story of millions of people of this community around the world
We talk about awareness, then acceptance
And yes, we talk about, you know, the symbols
You know, fossils, which is all important
(42:13):
All of that is important
But what do you think? And I've been thinking about this because
You know, from my end, thinking about, okay, what is missing right now in autism?
What is missing to take us closer to that mission?
Of making sure, of getting everybody
No matter where you are on the spectrum or who you are with other conditions
(42:37):
To get the best quality of life possible
From your experience and perspective, what do you think is missing?
What else do you think that we can do better in regards to autism?
And provide the resources and the support for families and loved ones that have
You know, they have loved ones on the autism spectrum
What do you think?
I think two things, and they're very different
(43:00):
First of all, I think the autism and autistic community needs to come together
Because right now, there's a lot of in-fighting
And at the end of the day, I think we all want the same thing
We want more services, more support, more awareness, more acceptance for autistic people
But the fighting on social media about symbols, terminology, and all those useless things, honestly
(43:29):
It's not accomplishing that
Another thing is, we need more awareness of profound autism
And I speak about this because it's something very close to my heart with my son Charlie
I feel like, and that makes sense, I feel like there is more awareness of level one aspergers
(43:50):
Because by definition, we're able to self-advocate, right?
So we're going to be on social media talking about it because we can
Someone like my son Charlie can do it
So it requires the parents doing it
But when parents do it, they get attacked, right?
So it's really difficult
(44:12):
And also I feel like, at this point in time, people want the feel-good story
The autistic person, non-verbal until age seven, graduated high school
But that's not a reality for a lot of autistic people
As much as I would love for Charlie to graduate high school
If at 18 he's able to not see a screw and eat it, I will be happy
(44:39):
That's my goal for Charlie, it's not for him to graduate
Does it mean that it's not worthy of celebration if he reaches that goal? No
We have different goals and I feel like we should be able to celebrate these goals that are not media worthy
It's not going to get a headline in the newspaper, but for my family, that would be incredible
(45:03):
If Charlie gets to the point where he can understand that eating a screw is dangerous
And that's a goal that should be celebrated just as much as someone who's able to graduate high school
And I think we need more awareness
We need more awareness for people to understand that not all autistic people are going to be able to be like you and me and others
(45:28):
There are some autistic people who have very severe behaviors and they need so much support
And right now the support is not there, I can tell you
I was singing the praise of the United States, but it also varies by state, right?
Some states are so much better, and I'm in Texas and when it comes to autism services, we're at the bottom
(45:52):
And Charlie has been on the waiting list for respite care for instance for, I don't know, eight years I want to say at this point
Seven or eight years, and they told me it's going to be an additional 15 years
15 years, like that's how long I have to wait for more help for Charlie, you know, and that's not okay
And how are we going to get that help? By talking about it, you know, let's spread even more awareness
(46:18):
People often say we don't need awareness, we need acceptance
How do you get acceptance? By raising awareness, right?
So we still need a lot more awareness because I bet you that most people haven't heard of pica
You know, which is a very common co-occurring condition with autism for instance
And we hear a lot about level one autism and not so much about profound autism
(46:43):
And I think it's important to get more services
I'm with you, and talk about the different issues that are not talked about enough in autism
Even going to adult, for example, in terms of the justice system, you know, in terms of the interaction with the law enforcement, for example
There's a reality that there's a lot, you know, there are autistic individuals that are in jail right now and they're innocent
(47:08):
Why we're not talking about that right now, for example, in terms of the legal system
Also, faith-based initiatives, I'm also being proponent, you know, working with faith-based organizations
And to be honest, they haven't done enough, you know, there are some organizations, faith-based organizations
They do a tremendous job, but we need, I want to see much more from the churches in the community in terms of special needs families
(47:35):
That's one area we need to talk about, guardianship, housing, jobs, health care, the waivers
You mentioned about the, you know, the waiver, the long wait, you know, for where I am in Florida, the ridiculous waiting list of seven to 14 years
Which is outrageous and BS, you know, that's, I'm quoting it like it is
(47:57):
Those are the things that need to be talked about because again, all of this go into the mission of quality of life
And that's what the mission of autism is, awareness is important, acceptance is important, action, education, all of that is important
We need to talk about, you know, profound, severe autism, you need to show it all
(48:18):
And the key is how to get those resources and supports to help, because again, another thing I want to also mention is that autism not only impacts the person with a diagnosis, but also the family
You know, parents that have to give up their job to take care of their loved ones, and through my job, I received those calls every day
You know, what's going to happen when I'm not there for my son, for my daughter anymore
(48:44):
The siblings have to take, you know, will the siblings be able to take care of the child, the uncles, you know, there's a lot of questions about that
And those are the things we need to talk about autism more often
Yeah, thank you Tony for mentioning the families because you know, there is that belief that only autistic people should be speaking about autism
(49:05):
Like that's something I hear a lot from people on social media
And no, because I mean, almost at least a third of autistic people wouldn't even be able to self advocate
So if you're only giving a voice to autistic people and not their family members, you're only going to be hearing about, you know, maybe half, two thirds of the autistic community, you know
(49:29):
There's got to be, everyone deserves a voice, siblings and parents, caregivers, professional teachers, and I think that's an important thing to remind people of, so thank you
My pleasure, and Eileen, as we conclude our interview, I wanted to talk about your work
We know that you created the Autism Cafe blog website
(49:52):
What motivated you to create the Autism Cafe? What motivated you in terms of doing that?
You know, it's funny, I get asked that question a lot, and I was like, it just kind of happened
Like I started talking, you know, right, so first thing that happened is that Charlie got diagnosed with autism
And then I wanted to keep my family and friends informed, you know, on autism
(50:20):
I wanted to kind of like raise awareness of autism within my friends group
You know how you have a private profile on Facebook and it's just your friends?
So I started sharing there, and I wrote a post that's like, everyone was like, oh you got to make that public, it's so good
So I made that post public, and little did you know, the thing went viral
(50:42):
That was a post in French, and that was just on my personal Facebook, and from there it kind of like snowballed
And someone was like, oh you should start a Facebook page, so I started a Facebook page
And that Facebook page reached a lot of people, and yeah it snowballed from there
And people were like, oh I can so relate to what you're saying, you know
(51:06):
And it just made me feel less alone, because as much as, you know, I want to connect with parents of autistic people at the time
Every time I met, not every time, but like I went to a party at Charlie's ABS Center when Charlie was two
I was trying to connect with his parents, people who get it, right?
(51:29):
But all the kids were like talking, and you know, they had challenges that were so different from Charlie's
So it was like I had met people that, you know, I was supposed to get it, but nobody had an honorable child that I had met at that party for instance
And then I went on Facebook, and there were so many people who had honorable children, and you know, were going through the same thing
(51:53):
So it was a nice way for me to connect, it was really a way for me to connect at first
And then it turned into, you know, raising awareness, sharing our story, and yeah it just snowballed from there
And now I think my mission is just really for people to understand how broad the spectrum is
And that, you know, autistic people are all different from each other
(52:18):
I love that quote from Dr. Stephen Shore, if you know one autistic person, you know one autistic person, because it's true
And I think that's why it's important that many autistic people share their stories
Definitely, it's about sharing their stories, not only the achievements, but the defeats, the difficulties, the pains, the sad moments
(52:41):
That's what makes it a complete story, and that's what we're here for
And Eileen, I know that you wrote two books, All Across the Spectrum and Be the One, can you tell us a little bit about your books?
Yeah, so All Across the Spectrum was like my childhood dream
I always tell people when they ask me what do you want to do, I want to write books, and you know, everyone would laugh
(53:05):
Ta-da! So yeah, it was like really, really great for me
When Charlie was diagnosed, and I was diagnosed, and everything like fell into place
I had just so much on my mind that I needed to like write about
It was just like crazy to me, that revelation that I was on the spectrum too, you know
(53:30):
That's why I struggled with this, that's why I struggled with that, that's why I was good at that, you know
And then there was also the realization that, but wait, I have the same diagnosis as my son, but like he's non-verbal, and you know, it seems different
And so my book was just about sharing about my discovery of being autistic, but also about the challenges of raising a child with severe autism
(53:57):
And also about social media, because I was very new to social media then, and honestly I didn't handle the hate as much as well as I do now
But I speak about that too, because I think any new parent who has a child being diagnosed, who goes to social media and sees the fighting is probably thinking
(54:18):
Oh my god, and you know, it must be like very overwhelming
So I speak about that a little bit, and then my second book, be the one, is more like a poetry book, self-help, inspirational I guess, it's just for people
I don't want people to feel alone, and I speak, it's very very raw and open, I speak about
(54:41):
You know, failure and French failed relationships and anxiety and you know, overthinking and like very very real things that I think a lot of people feel
And don't speak about because you know, it's hard to be vulnerable, so it's a very vulnerable book
Definitely, and I know your books have had a profound impact, not only on autism, but also mental health in different areas of life, and your story is truly valuable, Eileen
(55:14):
And your contributions not only to autism, but also in society in general, mental health and everything, have been tremendous, I'm very proud of you, very proud of the work that you do for our community
And before we go, Eileen, I just wanted to ask you if you have a final message for society, community, parents about autism, any special message for the autism community and the parents that you'd like to share?
(55:39):
Yeah, I think first, don't forget about profound autism because you know, inspirational stories are great, but you got to remember that a lot of people are not going to have that happy ending that you see in the media
And we need help and we need support, and the last thing would be just remember that if you've met one autistic person, you've met one autistic person, and if someone on social media tells you the autistic community hates this
(56:11):
Just know that it's not true, whatever it is they're going to tell you it's not true because there is not one autistic community
We're all different, we're all different people and it's important to remember that we all have different views and that's okay
Well said, and Eileen, how can people find you on social media and you can share also your website as well
(56:35):
Yeah, it's the Autism Cafe, one word, no spaces, on Instagram and Facebook, and then it's Eileen.Lam on TikTok, and my website is the Autism Cafe.com
Perfect, I'm going to put all your social media links and website, if people are interested in buying your books and supporting your work, which you know, for me your work is tremendous and important for our community
(57:04):
I'm going to put them on the post once this episode of My Time is published
Thank you so much Tony, it was a pleasure chatting with you as always
Thank you, and this is your home, and you're always welcome to come here and talk about this, about our world, which is autism
And Eileen again, thank you so much for having participated in this episode of My Time, I greatly appreciate it
(57:30):
Thank you Tony
Thank you
A very inspirational story indeed for Ms. Eileen Lam, and we really appreciate her work for the autism community
And so if you haven't done so, I invite you now to subscribe to my podcast in all the platforms on Spotify, Apple Podcasts, Amazon, and among others
(57:53):
And if you haven't done so yet, I invite you to please subscribe to all my social media under Tony Hernandez-Pomorejo
And if you like this episode, like, share with everybody that you know, and I really appreciate your support always
So this has been Tony Hernandez-Pomorejo for this episode of My Time with Tony Hernandez-Pomorejo
(58:15):
And until next time, I'll see you around, God bless
(58:45):
Thank you for watching
So I respect the fact that what works for me doesn't work for other people
(00:06):
But I also want to accept that I'm being harassed because people don't like what works for me
Like, this is the thing that's really difficult in the autism community
That people are trying to make it that we're one voice
(00:49):
Hi and welcome to this new episode of My Time with Tony Hernandez Pumarejo
And this is your host, Tony Hernandez Pumarejo
(01:10):
I'm truly honored and privileged to have you here today
Either watching me or listening to me in this new episode
And today we're going to have the honor and privilege of interviewing Miss Eileen Lim
Eileen is an autistic self advocate and also a parent to her autistic children
She's the author of the books called All Across the Spectrum and Be the One
(01:35):
And she's the founder of the Autism Cafe
Eileen is also a writer, photographer and podcast host
And she's also the director of social media for Autism Speaks
Born in France, Eileen now lives in Austin, Texas with her two sons, Charlie and Jude
And their sister, Billy
On her blog, she shares the ups and downs of raising two autistic children
(01:59):
One with profound autism, while being on the autism spectrum herself
So, you know, her story is very inspirational
And she has been a strong advocate for our community
So without further ado, let's go to the interview that I had with Miss Eileen Lim
Of the Autism Cafe
It is my honor and privilege to have you here today, Eileen
(02:20):
Thank you so much for coming in today in my time with Toni Hernandez-Pumarajo
Yeah, of course. Thank you for having me, Toni
Thank you
It is an honor and privilege to have you, Eileen
Your story is very inspirational
It's a story that, you know, as a parent and yourself also being autistic
I mean, I'm going to ask you
(02:41):
But with you being an advocate, being a parent to your three children
You know, being an entrepreneur, an author, a writer, you know, employee
My question is, how do you do all of this?
I mean, what helps you to overcome so much, you know, so many tasks on your daily life?
And how do you do that?
(03:03):
You know, it's all about balance
And all of these things, they don't happen at the same time, you know
Because I'm working when my kids are at school, for instance
And I'm writing when my kids are asleep
And so there is like a time for everything
And I feel like everything fits perfectly into my life
And you can see that there is a common theme into everything I do
(03:27):
I feel like everything has a link to autism
You know, I work at Autism Speaks as the director of social media
Because, of course, as an autistic mother to two autistic children
I mean, autism is like such a big part of my life
So I don't think I could work somewhere that doesn't have a, you know, autism connection
(03:48):
So even though it's my job, it feels like, I don't know, it doesn't feel like I'm working
Because you know what they say, you don't work a day in your life
If you're working doing something that you love
And I love advocating for autistic people in our community
So for me, it's really great
You know, the kids are at school, well, my youngest, Julie, is at school
(04:11):
And not my youngest, he's my middle child now
See, my baby is one and I still call my middle child my youngest
Because I'm not used to having three children yet
But school and, you know, Charlie's in therapy, all that
So it gives me time to do those things I love
And I love working, I guess
(04:32):
And then when the kids go to sleep, I just, I write
And that's how I was able to write those two books
Yeah, you know, you do so much
You know, I'm very proud of what you do
Your story is very inspirational
You know, I believe and this is, you know, that our community is in debt with you
Because you have different perspectives
(04:52):
You as an autistic self-advocate, as an autistic parent, a parent, an entrepreneur, a leader
For our community, your perspective is very valuable
And I'm also proud to call you my colleague, you know, working with Autism Speaks
So we have done great things together and, you know, Eileen, I ask, you know, this next question
(05:13):
I'm going to ask you, I ask everybody, you know, in my podcast
I ask you, you know, how do you define the life of Eileen Lamb in just a few words?
If I have to use just a few words
I'm a passionate advocate for the autism community
(05:34):
And also a mother and a writer and someone who just pours her heart into everything she does
That's it, you know, and that's what it is
You know, the story of Eileen Lamb
If people ask me, you know, what's the story of Eileen Lamb?
(05:55):
And they tell me to define it in this case one word
I would call it perseverance
You're a very perseverant individual, you know, working with so many things, you know, in the community
Personal life, work, balance, parent
I mean, you have to do so many things
And I think the perseverance is the best quality that I can describe Eileen Lamb
And Eileen, you know, let's, you know, about this amazing story
(06:16):
Let's go back from the beginning
Let's talk about how it all started
About yourself, your childhood, where you come from
And tell us about your life as you were growing up
Yeah, for sure
So I was born and raised in France
That's why you hear an accent
And, you know, I had a good childhood
(06:39):
But there were a lot of things that didn't come easy to me
I always felt like I was on another planet
Like I could never really fit in with my peers
It was always really strange to look at the kids around me
And feel like I was missing something, you know
(07:00):
It's like I couldn't quite understand what
Why these things were important to them and not to me
Why they were laughing at me and not with me
And it was interesting, you know
I only really got along with people when we shared the same interests
(07:23):
Because then I could go all in and tell them all about it
And, you know, it was just like
But so, you know, my life in France, my childhood
It was a mix of...
And that's all I ever knew
So I didn't even know it was not a normal experience
You know what I mean?
Because you don't know what you don't know, right?
(07:46):
So if people don't tell you that they don't feel the same way you do
I mean, you're not just going to assume that they're feeling differently than you
I was thinking that, oh, well, everyone is probably feeling the same way
To a certain extent
But really when I grew up
(08:07):
And when I reached like 15, 16 when I was a teenager
And everyone was enjoying things again that I just couldn't enjoy
Like going to concerts, that was like so big
You know, parties
And, you know, I liked parties all right
But I had to...
And, you know, I'm opening up here
(08:28):
I couldn't socialize unless I had a drink or two before
Like I needed something to be able to interact with people
I couldn't go to like the fireworks
Like that's a big thing in France on the July 14th
Because that's the national day in France, Bastille Day as you call it here
(08:49):
And I remember like for a few years
Like a few years in a row trying to like go with everybody
And I just couldn't do it, you know
And I think that's a story I mentioned a lot
Because it was really shocking to me to see everyone like so, so like happy about like
Oh yeah, we're gonna go see the fireworks
(09:10):
And like they love like being in the crowd and the noise and the lights
And I'm just like...
I couldn't even like, you know
I was like thinking about it two weeks before
Having anxiety and trying to work myself up to it
And I just couldn't do it
So anyway, there are a lot of ways in my life
Where I just felt like I didn't fit in
(09:32):
Yeah, and you know
There was some bullying too
Which we can get into later
But so that was my life
Not, you know, neutral
Not super happy, not bad
But I definitely felt different from a young age
And that's very common
I mean, with many different stories in our autism
(09:55):
You know, not only autism
All sorts of, you know, disability, community
In this case of autism that
You know, you feel that there was something different about you
Even though you don't know what it exactly was
At what age were you diagnosed with autism?
So I was 25
It's only until I came to the US
(10:16):
And that my oldest son was diagnosed
That I put the pieces together
Okay, so that's where it was a confirmation
In terms of what it was
And going, you know, you went through that transition
Moving from not only a country
But also a continent
You know, as well to the US
You know, being born and raised in, you know
(10:37):
In a different country, in this case, France
Before you moved to the US
Or did you have some conceptions about the US
Before you moved in?
And how did it change after you moved to the US?
Especially moving to Austin and Texas
You know, it's funny because
I feel like a lot of people, especially in France
(11:00):
Like when they think about America and the United States
They just kind of like make fun of it
Oh yeah, you know, all the burgers and like all the seafood
And you know, they have like a lot of
Judgments about it
And to me
And I grew up watching TV shows
(11:20):
And I were like, oh, in America
You know, like
How is it called in America?
Seven heavens, I think is what you call it
It's like, oh, that's family with all the kids
And you know, like seeing the yellow school bus
And like all of these kids
And it seemed like accepting
And they had like cool things we didn't have in France
(11:43):
And I don't know, the yellow bus to me was something that's
I was like one day I'm going to ride that yellow bus
Never happened, but
Anyway, so I had like
I've always like really seen America's
You know, the American dream
Which a lot of people also do
(12:03):
It's not all like the negative
And I wasn't happy in France
By the time I reached like 20, 21
You know, I kept losing all of my friendships
I didn't understand why
It just, I couldn't get my, you know
I had gotten my high school degree
Couldn't get a degree past that
(12:25):
Because every time I try going to the university
I would just have a meltdown
Because there were too many people
And again, I didn't know why
I was just like, you know, what is wrong with me?
You know, it's not like I can't have like a beer at seven in the morning
Like before going to class, you know, that's just
So I just stopped going
And I had nothing going on in my life
Except, you know, I was playing online poker
(12:47):
The game, Texas All Dem
And so that was what I was doing
I was earning money doing that
But it's like, that's not life
You know, I'm not gonna, I mean, that could be life
But I knew it wasn't realistic
I wasn't gonna be a professional poker player
So anyway, I looked into ways to go to the United States
You know, on a visa
(13:09):
And the one way was to be an au pair
Which is like a nanny taking care of a kid
So that's what I did
And I found a family in Austin, Texas
And I kid you not, after one day here
I had never felt that in my heart
Like I had never felt this good
And I didn't even speak the language yet
(13:31):
You know, except like, hi, how are you?
Like very basic language
But everyone was like smiling
Like I was walking down the street
And people were saying hi to me
And it was just like the weirdest
But in a good way, like experience, you know
I felt like I was accepted
Like no one cared how I was like dressed
Or how I behaved
(13:52):
It was just like, I felt accepted like right away
And it was just like mind-blowing to me
And well, it's no surprise that 12 years later
I'm still here, yeah
That's very interesting
You know, it turns out your perspective
And how you look at things
How your life was going before coming to the US
(14:15):
And how your perspective and view involved
Moving after, you know, after moving to the US
And it's very interesting because this is the topic
I wanted to talk to you about because
You know, not only, you know
It's not only autism specific
But there's always a comparing contrast between countries
For example, Europe has better healthcare than here
Or it's better than this area than here
(14:36):
And I think it's very important to realize that
Europe is a continent and there's differences between the countries
For example, not going back to autism the other day
I was just, I was sending letters
I was sending proposals to autism organizations
And special needs organizations around the world
And it was very interesting to see the number of organizations per country
(15:01):
In terms of a ratio, you know
How many organizations were in this country compared to this
For example, and I'm going to use your home country, France
You know, when I was doing research in France
I didn't see too many autism or special needs organizations in France
In comparison, for example, to Spain
Which, you know, neighboring countries
(15:23):
I saw that Spain has more
And I can tell you from this from experience because
I've been to Europe one time and that was when I went to Spain
Because my brother lives in Spain
And I went to this autism organization when I was there
But the highest, the very high number of autism organizations in Spain
In comparison to France is very interesting
(15:44):
And I know that there's been talk about in terms of, you know, in other countries
Not only France, but other countries
You know, they look autism or special needs as something more of a burden still
They have that mindset that was like, you know, pre-age mindset about autism
And I want to talk to you about, you know, as you grew up in France
(16:07):
And I know you're the best person to share this with us
What was some of the challenges or stigmas
The special needs families face in your home country?
Can you go in detail about those challenges?
And if it's possible, compare and contrast in terms of services in France to those in the US
Yeah, I mean, and I think like a lot of people are going to be surprised
(16:30):
But if you have an autistic child, you don't want to be in France
You know, like people think of France as, oh, wow, universal health care
Well, did you know that's like in my hometown, like it takes a year to get an appointment just to get like an eye exam?
Yeah, it's like that was an article in the newspaper in my hometown like last week
(16:54):
Did you know that only 20% of autistic kids have access to appropriate education in France?
Most of them like, you know, are not in school
And, you know, ABA therapy, for instance, there are only, I don't want to say a number
But there you can count on two hands the number of ABA centers in France
(17:18):
We're talking about a country just in Austin, Texas, where I live
I think we probably have like 20, 25, probably more. I'm not even counting anymore, you know
And not only that, but most of the time in France, insurance doesn't cover therapy
So great you have free health care, like if you have a cold
(17:40):
But if you have a child with autism, you're going to be paying out of pocket, you know, for everything
And you're going to be struggling to get services because the waiting lists are insane
Which, you know, it's an issue in the US too, to a lesser extent
But in France, getting care, I mean, from what I've heard from people who follow me
It is horrible and things are changing, but very, very slowly
(18:04):
I mean, just autism diagnosis in France, you know, it's still like, I don't know the exact stats
I'm not going to say about like in the US, we're one in 36 children being diagnosed with autism
I know that just a few years ago, it was one over 200 in France
And I think they're in the hundreds now, so it's getting better
(18:26):
Again, don't get me wrong, but there is a long, long, long way to go
When I was growing up, again, I didn't know I was on the spectrum
Even though I was a textbook autistic child, I mean, it's pretty funny looking back on it
But I was diagnosed as, and it's not even a diagnosis because my mom took me to some specialist
(18:50):
And they said, well, she's shy and she's gifted
It's like, what does this tell you now you say that?
Like, don't you think like Asperger's like right away?
You know, like the pieces were there, I learned to read when I was three, read and write
Which was like hyperlexia
And, you know, they just put a bunch of like, they had explanations for everything
(19:15):
You know, none of it was autism
And I just feel like nowadays I would have been diagnosed like, you know, no problem
And, you know, maybe even in the US back then in the 90s
I wouldn't have been diagnosed because there's been not just in France, you know, but here too
Diagnosis criteria, especially for girls has become, you know, not different
(19:40):
But people, doctors know more about autism in girls and all of that
But another thing about France and the stigma is that for instance
I, so I had therapy as a teenager, I went to therapy on my own
I made that decision because like I said, it was like, why am I losing all of my friendships?
Why do I feel so different?
(20:02):
And there is such a stigma around mental health that I would put a hoodie on my head when I entered the building
To go to therapy because people make fun of you because only crazy people go to therapy
That's what people think in France, not all of the people
(20:26):
But there is a big stigma around that and mental health
Again, I think it's getting better, but it's still not there
Even like recently, a politician, very famous politician in France said something like
Well, I heard them, I'm not autistic in a speech
(20:48):
And I was like, what, five, six years ago?
I mean, there are just so many things that are wrong about France and autism
So many families were trying to move even like to Belgium, Switzerland
A lot of them are trying to move to the US, but you don't get a visa like that
(21:09):
It's really difficult to move to a different country, to the US when you're from Europe
Yeah, it's just bad
Yeah, we pay for insurance here a lot, but Charlie gets 40 hours a week of ABA therapy
(21:31):
40 hours, it's just like, well, so we get insurance, you and I through Autism Speaks
Which we pay for monthly, I mean, Charlie is on my insurance and I pay nothing for ABA
I just pay for the insurance, right? And that's 40 hours a week
(21:52):
And I think that's just like, that's incredible
And you know, I'm struggling with the school district with Charlie, but at the same time, he's at school
And at least, you know, I can fight
I'm just like fighting for more for him, but in France, we don't even be at school
And there is no law that makes that he has to go to school
(22:13):
So at least here I have something to fight for, in France, I would have nothing, you know
And the one time I went back to France since moving to the US, which was 2015, yes, 2014
I haven't been to France in almost 10 years, yeah
See how I feel about France
Charlie was having a meltdown, he was like one and a half, he hadn't been diagnosed yet
(22:38):
And the guy walks by and says, well, like, this child is so rude and he needs like better parenting
Seriously, like, I've been in the US for like, what, 12 years now
And Charlie has had a lot of meltdowns and yeah, you know, some people stare and look
(22:59):
But no one has ever said anything that rude
And I was just like one week of my life since becoming a parent in France and I got that rude comment
So yeah, there it is
I feel like I just like ranted about France so much
People are going to think I hate France a little bit, but you know, not that much
Well, I'm interested in visiting France, so just to see how it is
(23:24):
But it's very interesting and your perspective is very valuable because you've been there
You were born and raised there
It's not like you go to, let's say Reddit and say, oh, go to France or go to this page
Everything is wonderful, healthcare, housing, social services, education
But one thing is on the forums and another thing is in reality when you go there
(23:46):
Obviously everything is case by case
And as I mentioned, you know, we have the continents
Europe is not the same
There's different, you know, countries have differences, cultures, systems
Here in the, even the US here
You know, the different, the states are not all the same
Some states have more services than others
And not only that, another area that I think we need to, which we focus on more is in terms of the comparison of services
(24:10):
Between metro areas and rural areas
Recently I did an article on my blog, which I talk about, for example
The challenges that Hispanic families, that have loved ones on the spectrum face in rural areas
Comparing contrast to metro areas, let's say Florida, California, Texas, New York, for example
(24:32):
So I think that, you know, most, you know, obviously the consensus here is that if you're in the metro area
There's a higher chance you will get the services that you need
But if you're in a rural area, then unfortunately, sadly, it's going to be super difficult to get services
And so it's very interesting, you know, from your perspective and your experience being in a different country
How things work there so far
(24:55):
And it's great, and you mentioned something very important as well, is the stigma, especially with mental health
Mental health is something that unfortunately there's still a lot of stigma everywhere
And there's some that's an area that we need to work on as a society because mental health is real
Mental health crisis is real, there's no stigma, there's no faking it, it's real
(25:16):
And I very appreciate you sharing that perspective, Eileen
So now from France, we're going to transfer to the U.S. so we won't speak about French anymore
Let's go to the good old USA, let's talk about now you as a parent
Just wanted to confirm, at what age was Charlie diagnosed with autism?
(25:39):
And also your son, Jude
Charlie was 22 months old and Jude was 5
Okay, and if you can share with us a little bit about your experiences, especially with both of them
How you navigated their evaluation, diagnosis, intervention
(26:00):
And what was the difference in terms of experience, you know, raising and helping Charlie and also helping Jude
What were some similarities and also some differences, if you can share that with us
Yeah, I mean, so Charlie was diagnosed first, Charlie's my 10 year old
He was diagnosed when he was 22 months old, he started losing his words when he was 18 months
(26:26):
And you know, I was a first time mom and I was speaking French and English to him
And I was like, well, maybe it's just a bilingual thing
Like it's harder for him to, you know, pick up on language, keep it up
But anyway, I took the M-Chat, which is, you know, was the online M-Chat was funded by Autism Speaks
(26:47):
Which something I learned recently is that before the M-Chat, Autism Speaks, you know
Made the M-Chat available online, people had to, you know, fill out the M-Chat questionnaire
Send it in the mail and wait for the results back
That's how it was before, so big kudos to Autism Speaks for that
(27:11):
So the M-Chat, if you don't know, is an online questionnaire, well now it's online
And it asks 20 questions about your child, things your child does or doesn't do
And any score above 3 is a risk for autism, again 20 questions
(27:32):
Charlie scored 18, so we called early intervention, which is free or low cost in every state
Just Google early intervention and your state
And he was evaluated and he qualified for speech therapy, OT, I mean he qualified for everything
(27:55):
He was like so behind, and again I felt bad because as a mom, I didn't know how
You know, he was my first child, I didn't know he was supposed to be pointing
I didn't know he was supposed to be clapping, you know, like these things that of course inside his 2020 now makes sense
So we got a little bit of therapy with ECI, he was like 20 months at that time
(28:19):
But they told me quickly, he needs more, you need to get him evaluated for autism
And you know, we got an appointment with a developmental pediatrician and he was diagnosed at 22 months old with autism
And it's like at that point I wasn't surprised anymore because I had started learning about all of it
(28:42):
They recommended ABA therapy for him, I went up to Google and I was like, oh my god, oh my god, what is going on
We're going to talk about that in just a little bit, about the ABA and the debates
So lots of controversy, but you know, Charlie got ABA therapy, yeah it was just my life's change at that point
(29:07):
And so you know, by the time Jude was Charlie's age, when Jude was around two years old, he was talking but you know not a lot
He had a lot of steaming, a lot of sensory issues and I was a little nervous about what was going on
(29:28):
But he was very social, he has that personality, he's always happy going to people
And you know, he had some special interests, around three years old he started being really interested in math and really good at it
And then by five, it became clear that he wasn't just quirky and it was also autism
(29:52):
But Jude was diagnosed with level one autism, which is probably what you're diagnosed with too Tony?
My back name was Asperger's
Asperger's, which I guess now goes into level one, yeah
And same with me, and then there is Charlie, but Charlie is diagnosed with level three autism
Which now we can call profound autism
(30:13):
And his behaviors are like so severe, he's non-verbal, attentive still
You know, he has something called pica too, which is that he can't help but put non-edible items in his mouth
Recently he swallowed a screw, a surgeon had to get the screw out of his colon
It's just, it feels like almost two different diagnosis to me, so same diagnosis for three of us in my family
(30:41):
But we're also different from each other, you know
Yeah, it is very interesting, you know, and recently, yesterday in fact, I watched the documentary
There was an autism speak about the challenge story, you and Charlie
And I seen through your social media about the challenges with pica, and also what you mentioned earlier
(31:03):
Was about the fight within the school district and fighting for the rights of Charlie
To make sure that he's getting the support that he needs towards the development
And it's not easy, you know, you have to deal with the challenges not only as a parent
But also living on the spectrum at the same time
And as you mentioned, you know, there's three, there's you, Charlie and Jude
(31:26):
Each of you has a different, you know, story and you know, similarities but also, you know, differences
And if you can go, you know, in terms of, and I know it's an ongoing process, you know, what has helped you
You know, both as a parent, as an advocate to work with the challenges
Of not only the challenges that Charlie and Jude has faced, but you have faced as well in this process
(31:49):
What has helped in this process if you can share that
Yeah, for sure. I mean, for Charlie, what's helped the most is ABS or AP
You know, there's like no doubt he got into it when he was two years old
And by the time he was three, they had told him to communicate using an AAC device
(32:12):
And it was just incredible to see him go from like screaming all day
Like no kidding, screaming and screaming because he couldn't communicate, you know
To being able to make himself heard, it was like incredible
And they're still helping him now, you know, like with the PICA
(32:33):
Like no one wants to deal with Charlie because I mean, he's a liability, you know
His behaviors are like so, so, so dangerous and so scary and you know, he's my son, I love him
I can say he's, you know, he's so handful and I can understand why someone
Like would feel scared of like watching him because of how severe his behaviors are
(32:59):
But ABA, you know, they haven't given up on him and they're still trying to teach him
And I'm very thankful for that, you know
For me, it's more about, you know, that was the thing with my diagnosis
It's like I feel like if I had gotten help earlier, a lot of the struggles I went through as a child
I probably wouldn't have if I had known I was on the spectrum
(33:23):
Like that was my, the one thing I regretted when I was diagnosed was
Darn it, it wasn't me, like there was nothing wrong with me
I just was just different, I needed like to be communicated with differently, you know
And I wish I had known that earlier
(33:44):
But now, you know, just like one-on-one therapy for me is great because
I know what to focus on and I know why I struggle with what I struggle with
And with Jude now, I feel like he's the one who's gonna like get the
I don't know, for whom it's gonna be the easiest because now he has my, you know
(34:06):
I've been there, like I know what he struggles and I like just
Earlier, like he didn't want to go to the playground because
There are people, he was afraid of that, you know, and I totally can relate to a lot of
Of his worries and yeah, Jude did some ABA too, but really the thing for him is that
(34:30):
He has a lot of anxiety too, he needs to be challenged, his brain is going
Constantly, he has so much going in his brain and so we had to change school
Because the public school just wasn't working for him either, but for different reasons than Charlie
And yeah, so he's in a private school now and we're just trying to keep him challenged and
(34:55):
Busy, you know, so he doesn't get bored and also so he doesn't get bullied because he dealt with that too
And he was, you know, in first and second grade and I was like, no, he's not gonna go through that
You know, he's just a kid already, like and changing school has really helped with that
The public school, you know, and his teachers were great, but they're so overwhelmed in public school
(35:21):
Like there is only so much they can do, you know, when the school doesn't have the funding and so yeah
Oh, definitely and it's a process, well, this is a process, you know, it's ups and downs in this process
And you have done, you know, a tremendous job under the stress, the pressure in providing the best quality
(35:46):
Of education, you know, not only education, but also in terms of quality of life for your children and your family
And that's the most important thing, it's an ongoing process and you learn from this
And I'm very proud of what you have done and your story again can be a great sample
Of leading example for not only autistics, but also parents as well with special needs children
(36:09):
And Eileen, now, you know, speaking about the wonderful ABA therapy, unfortunately, you know, as you know
There are, you know, there are, you know, there's debates out there in the autism world
About ABA therapy, the first, the third use of language or I don't know, they come with different terms
(36:32):
First, autism, autistic, neurodiversion is like so many terms, then we have the debates of the parents
Against autistics, autistics and real autistics, actual autistics, criticism of organizations
Seeing autism as a disability or superpower, all of this, that you know this very well
(36:54):
My question for you is, you know, today, and I know you're done with this as an advocate
You know, why you think about all of these debates, you know, what has helped you in terms of dealing with these debates
Do you think that these debates are really taking us closer to what I believe should be the mission
(37:16):
In regards to autism, which is quality of life, or this debates are continuous to take us away from that mission
What is your perspective?
Yeah, I mean, that's what keeps me going through all the, you know, social media hate
Because people don't necessarily agree with the things I find helpful for my family, for myself
(37:40):
It's just that it works for me, it works for thousands, hundreds of thousands of other people
So I respect the fact that what works for me doesn't work for other people
But I also won't accept that, you know, I'm being harassed because people don't like what works for me
(38:04):
This is the thing that's really difficult in the autism communities, that people are trying to make it that we're one voice
And it's just not how it works because we're all different people, I mean, just like we've been talking about
You know, like it's three autistic people in my family, and you know, I'm closer to Jude, you know, our struggles than Charlie
(38:27):
But we're still different, you and I, same diagnosis, different struggles, different strengths
And so when people like go on social media and say, well, autistic people hate the puzzle piece
Like, excuse me, no, I mean, I don't, I know lots of people who don't, so like speak for yourself, you know
(38:49):
And people can't do that, they always have to make it, you know, something that it's not
And it's just frustrating, and honestly, I don't know, maybe that's the French in me
But like the more I feel like people are like wrong in a way, like they are coming at me
The more I'm gonna like fight back, you know, it's like the revolution, okay, well, you're trying to silence me
(39:14):
Well, I'm just gonna like shout it louder because there are a lot of people who agree with me
There are a lot of people who are like scared to speak up on social media because you've bullied them into silence
With things that are not true, so now I'm gonna speak louder for those who are like too scared to, you know, take that social media hate
So that's what keeps me going because I know that we're a majority
(39:37):
But that, the other people, they're so vocal that you would think that there are like too many of them
But really, they're just, they're a vocal minority
Because most people, they don't just go on someone's social media and insult them
They don't go and say, wow, you're abusive for putting yourself into therapy
(39:59):
Oh, I'm going to call CPS because your child is having like a cookie, you know
Like these things are just like so, so stupid, right?
I mean, let's call them that
I think it's okay for someone to say, hey, I had a bad experience with an ABS therapist
Totally fine to say
(40:20):
But to say ABS therapy is abusive and to generalize, that's where I draw the line, you know
I think people need to understand that they need to share their personal experience
I'm only speaking for myself right now as one autistic person
I don't pretend to speak on behalf of the entire community and no one should
(40:42):
And I think that's important to remember
Well said, and it's okay to have differences
That's not, you know, in reality, that's not the issue here
It's okay to have differences
It's the way that unfortunately different individuals approach those differences
And go to the insult and the attack and the personal attack unnecessarily
(41:05):
I mean, proclaiming that they speak for everybody, which is completely false
Which is completely BS
I mean, I can only speak for myself too
About my perspective as an autistic person
And also as an advocate and working with this community, parents and autistic individuals
(41:27):
You know, from all parts of the world
And I think that, you know, if we don't take care of those issues
You know, again, pointless attacks, unnecessary attacks
Then we're not, I believe we're not going to go farther in our mission
That's the way I see it
There's been progress, yes, but there's still much more that needs to be done
(41:51):
And, you know, going along these lines, I mean
I also wanted to ask you, you know, because we talk about autism, right?
Social media, your story, my story
And the story of millions of people of this community around the world
We talk about awareness, then acceptance
And yes, we talk about, you know, the symbols
You know, fossils, which is all important
(42:13):
All of that is important
But what do you think? And I've been thinking about this because
You know, from my end, thinking about, okay, what is missing right now in autism?
What is missing to take us closer to that mission?
Of making sure, of getting everybody
No matter where you are on the spectrum or who you are with other conditions
(42:37):
To get the best quality of life possible
From your experience and perspective, what do you think is missing?
What else do you think that we can do better in regards to autism?
And provide the resources and the support for families and loved ones that have
You know, they have loved ones on the autism spectrum
What do you think?
I think two things, and they're very different
(43:00):
First of all, I think the autism and autistic community needs to come together
Because right now, there's a lot of in-fighting
And at the end of the day, I think we all want the same thing
We want more services, more support, more awareness, more acceptance for autistic people
But the fighting on social media about symbols, terminology, and all those useless things, honestly
(43:29):
It's not accomplishing that
Another thing is, we need more awareness of profound autism
And I speak about this because it's something very close to my heart with my son Charlie
I feel like, and that makes sense, I feel like there is more awareness of level one aspergers
(43:50):
Because by definition, we're able to self-advocate, right?
So we're going to be on social media talking about it because we can
Someone like my son Charlie can do it
So it requires the parents doing it
But when parents do it, they get attacked, right?
So it's really difficult
(44:12):
And also I feel like, at this point in time, people want the feel-good story
The autistic person, non-verbal until age seven, graduated high school
But that's not a reality for a lot of autistic people
As much as I would love for Charlie to graduate high school
If at 18 he's able to not see a screw and eat it, I will be happy
(44:39):
That's my goal for Charlie, it's not for him to graduate
Does it mean that it's not worthy of celebration if he reaches that goal? No
We have different goals and I feel like we should be able to celebrate these goals that are not media worthy
It's not going to get a headline in the newspaper, but for my family, that would be incredible
(45:03):
If Charlie gets to the point where he can understand that eating a screw is dangerous
And that's a goal that should be celebrated just as much as someone who's able to graduate high school
And I think we need more awareness
We need more awareness for people to understand that not all autistic people are going to be able to be like you and me and others
(45:28):
There are some autistic people who have very severe behaviors and they need so much support
And right now the support is not there, I can tell you
I was singing the praise of the United States, but it also varies by state, right?
Some states are so much better, and I'm in Texas and when it comes to autism services, we're at the bottom
(45:52):
And Charlie has been on the waiting list for respite care for instance for, I don't know, eight years I want to say at this point
Seven or eight years, and they told me it's going to be an additional 15 years
15 years, like that's how long I have to wait for more help for Charlie, you know, and that's not okay
And how are we going to get that help? By talking about it, you know, let's spread even more awareness
(46:18):
People often say we don't need awareness, we need acceptance
How do you get acceptance? By raising awareness, right?
So we still need a lot more awareness because I bet you that most people haven't heard of pica
You know, which is a very common co-occurring condition with autism for instance
And we hear a lot about level one autism and not so much about profound autism
(46:43):
And I think it's important to get more services
I'm with you, and talk about the different issues that are not talked about enough in autism
Even going to adult, for example, in terms of the justice system, you know, in terms of the interaction with the law enforcement, for example
There's a reality that there's a lot, you know, there are autistic individuals that are in jail right now and they're innocent
(47:08):
Why we're not talking about that right now, for example, in terms of the legal system
Also, faith-based initiatives, I'm also being proponent, you know, working with faith-based organizations
And to be honest, they haven't done enough, you know, there are some organizations, faith-based organizations
They do a tremendous job, but we need, I want to see much more from the churches in the community in terms of special needs families
(47:35):
That's one area we need to talk about, guardianship, housing, jobs, health care, the waivers
You mentioned about the, you know, the waiver, the long wait, you know, for where I am in Florida, the ridiculous waiting list of seven to 14 years
Which is outrageous and BS, you know, that's, I'm quoting it like it is
(47:57):
Those are the things that need to be talked about because again, all of this go into the mission of quality of life
And that's what the mission of autism is, awareness is important, acceptance is important, action, education, all of that is important
We need to talk about, you know, profound, severe autism, you need to show it all
(48:18):
And the key is how to get those resources and supports to help, because again, another thing I want to also mention is that autism not only impacts the person with a diagnosis, but also the family
You know, parents that have to give up their job to take care of their loved ones, and through my job, I received those calls every day
You know, what's going to happen when I'm not there for my son, for my daughter anymore
(48:44):
The siblings have to take, you know, will the siblings be able to take care of the child, the uncles, you know, there's a lot of questions about that
And those are the things we need to talk about autism more often
Yeah, thank you Tony for mentioning the families because you know, there is that belief that only autistic people should be speaking about autism
(49:05):
Like that's something I hear a lot from people on social media
And no, because I mean, almost at least a third of autistic people wouldn't even be able to self advocate
So if you're only giving a voice to autistic people and not their family members, you're only going to be hearing about, you know, maybe half, two thirds of the autistic community, you know
(49:29):
There's got to be, everyone deserves a voice, siblings and parents, caregivers, professional teachers, and I think that's an important thing to remind people of, so thank you
My pleasure, and Eileen, as we conclude our interview, I wanted to talk about your work
We know that you created the Autism Cafe blog website
(49:52):
What motivated you to create the Autism Cafe? What motivated you in terms of doing that?
You know, it's funny, I get asked that question a lot, and I was like, it just kind of happened
Like I started talking, you know, right, so first thing that happened is that Charlie got diagnosed with autism
And then I wanted to keep my family and friends informed, you know, on autism
(50:20):
I wanted to kind of like raise awareness of autism within my friends group
You know how you have a private profile on Facebook and it's just your friends?
So I started sharing there, and I wrote a post that's like, everyone was like, oh you got to make that public, it's so good
So I made that post public, and little did you know, the thing went viral
(50:42):
That was a post in French, and that was just on my personal Facebook, and from there it kind of like snowballed
And someone was like, oh you should start a Facebook page, so I started a Facebook page
And that Facebook page reached a lot of people, and yeah it snowballed from there
And people were like, oh I can so relate to what you're saying, you know
(51:06):
And it just made me feel less alone, because as much as, you know, I want to connect with parents of autistic people at the time
Every time I met, not every time, but like I went to a party at Charlie's ABS Center when Charlie was two
I was trying to connect with his parents, people who get it, right?
(51:29):
But all the kids were like talking, and you know, they had challenges that were so different from Charlie's
So it was like I had met people that, you know, I was supposed to get it, but nobody had an honorable child that I had met at that party for instance
And then I went on Facebook, and there were so many people who had honorable children, and you know, were going through the same thing
(51:53):
So it was a nice way for me to connect, it was really a way for me to connect at first
And then it turned into, you know, raising awareness, sharing our story, and yeah it just snowballed from there
And now I think my mission is just really for people to understand how broad the spectrum is
And that, you know, autistic people are all different from each other
(52:18):
I love that quote from Dr. Stephen Shore, if you know one autistic person, you know one autistic person, because it's true
And I think that's why it's important that many autistic people share their stories
Definitely, it's about sharing their stories, not only the achievements, but the defeats, the difficulties, the pains, the sad moments
(52:41):
That's what makes it a complete story, and that's what we're here for
And Eileen, I know that you wrote two books, All Across the Spectrum and Be the One, can you tell us a little bit about your books?
Yeah, so All Across the Spectrum was like my childhood dream
I always tell people when they ask me what do you want to do, I want to write books, and you know, everyone would laugh
(53:05):
Ta-da! So yeah, it was like really, really great for me
When Charlie was diagnosed, and I was diagnosed, and everything like fell into place
I had just so much on my mind that I needed to like write about
It was just like crazy to me, that revelation that I was on the spectrum too, you know
(53:30):
That's why I struggled with this, that's why I struggled with that, that's why I was good at that, you know
And then there was also the realization that, but wait, I have the same diagnosis as my son, but like he's non-verbal, and you know, it seems different
And so my book was just about sharing about my discovery of being autistic, but also about the challenges of raising a child with severe autism
(53:57):
And also about social media, because I was very new to social media then, and honestly I didn't handle the hate as much as well as I do now
But I speak about that too, because I think any new parent who has a child being diagnosed, who goes to social media and sees the fighting is probably thinking
(54:18):
Oh my god, and you know, it must be like very overwhelming
So I speak about that a little bit, and then my second book, be the one, is more like a poetry book, self-help, inspirational I guess, it's just for people
I don't want people to feel alone, and I speak, it's very very raw and open, I speak about
(54:41):
You know, failure and French failed relationships and anxiety and you know, overthinking and like very very real things that I think a lot of people feel
And don't speak about because you know, it's hard to be vulnerable, so it's a very vulnerable book
Definitely, and I know your books have had a profound impact, not only on autism, but also mental health in different areas of life, and your story is truly valuable, Eileen
(55:14):
And your contributions not only to autism, but also in society in general, mental health and everything, have been tremendous, I'm very proud of you, very proud of the work that you do for our community
And before we go, Eileen, I just wanted to ask you if you have a final message for society, community, parents about autism, any special message for the autism community and the parents that you'd like to share?
(55:39):
Yeah, I think first, don't forget about profound autism because you know, inspirational stories are great, but you got to remember that a lot of people are not going to have that happy ending that you see in the media
And we need help and we need support, and the last thing would be just remember that if you've met one autistic person, you've met one autistic person, and if someone on social media tells you the autistic community hates this
(56:11):
Just know that it's not true, whatever it is they're going to tell you it's not true because there is not one autistic community
We're all different, we're all different people and it's important to remember that we all have different views and that's okay
Well said, and Eileen, how can people find you on social media and you can share also your website as well
(56:35):
Yeah, it's the Autism Cafe, one word, no spaces, on Instagram and Facebook, and then it's Eileen.Lam on TikTok, and my website is the Autism Cafe.com
Perfect, I'm going to put all your social media links and website, if people are interested in buying your books and supporting your work, which you know, for me your work is tremendous and important for our community
(57:04):
I'm going to put them on the post once this episode of My Time is published
Thank you so much Tony, it was a pleasure chatting with you as always
Thank you, and this is your home, and you're always welcome to come here and talk about this, about our world, which is autism
And Eileen again, thank you so much for having participated in this episode of My Time, I greatly appreciate it
(57:30):
Thank you Tony
Thank you
A very inspirational story indeed for Ms. Eileen Lam, and we really appreciate her work for the autism community
And so if you haven't done so, I invite you now to subscribe to my podcast in all the platforms on Spotify, Apple Podcasts, Amazon, and among others
(57:53):
And if you haven't done so yet, I invite you to please subscribe to all my social media under Tony Hernandez-Pomorejo
And if you like this episode, like, share with everybody that you know, and I really appreciate your support always
So this has been Tony Hernandez-Pomorejo for this episode of My Time with Tony Hernandez-Pomorejo
(58:15):
And until next time, I'll see you around, God bless
(58:45):
Thank you for watching
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