 Good day, my lovely listeners! You are listening to the Forty Auty podcast. Tune in every week to explore inspiring stories and insightful information that dive headfirst into the world of autism and mental health. With all those tantalising tongue twisters out of the way, let's get into the show. Good day, listeners! Welcome back to another episode of the Forty Auty podcast. Today is a little bit of a strange one because I'm recording on the weekend. It's been a very relaxing, calm weekend for me. Went to this really posh spa on Friday for my girlfriend's birthday and it was very, very crazy place. Very crazy place. But I'm feeling nice and fresh and cool for the next week and I've got a little podcast to sort of get things going. Today we're going to be diving further into the topic of autism parenting. We're going to talk a lot about the divide between the autistic community and the autism parent community. It's something that I think not a lot of people address. We tend to in these days, we tend to fight rather than get together and have an honest conversation. So this is what we're going to be doing and I have someone here, Eileen, who is here to talk about her experiences with being quite badly bullied online by the actually autistic community. Eileen, how are you doing today? Hey, I'm doing good. Thanks for having me. I'm excited for us to talk about this subject today. Me too. It's definitely something that I've wanted to address for a long time. As I said, we tend to in this culture to be a bit triggered by a lot of different topics and if someone says something that we don't like or we don't agree with or someone's on the other side of the fence then we tend to be very harsh with those people. Would you like to give everybody an idea of your background? Who you are, what you do as a job, the kind of stuff that you do online? So my name is Eileen Lamb. I'm French as you can tell by my accent, but I live in Texas now in the United States. I'm a mother of two little boys. Charlie is seven and he has severe autism. He's mostly nonverbal. My youngest son is Jude and I'm on the spectrum myself, but I was diagnosed with level one autism, which would have been considered as burgers a few years ago. Online I talk about autism a lot, mostly from my perspective as a parent raising Charlie, but I talk about my own autism too and I wrote a book about it called All Across the Spectrum, which talks about the spectrum because even though we share the same diagnosis, our experiences are so different from each other, my son and my experience. So that's why it was important for me to talk about all sides. I don't like the word sides, but all of the spectrum. I understand what you mean. I think there is definitely, I definitely under-exaggerated or underestimated rather just how varied autistic people can be. I knew that it was a spectrum and I knew that we all share different traits, but there is a wide variety of traits that are out there. Yeah. And I think that's confusing for people who don't know about autism too because in the movies you often see autism as very gifted people like the good doctor and rain man and always a servant skill or something when in reality for so many people it's not like that. I don't have a skill like this, I wish. Yeah, I completely agree with you. I think also that the stereotypes around an autism condition as well like being good at maths or engineering or coding or it's like one of those things like the more that I talk to autistic people the more that I realize just how like there's not many people who have met that are very very good at maths who are autistic. Could you tell us about sort of when you did your book and the kind of things that you did around it when it was released? Yes, I started writing it a while ago. So two years ago I pitched my book to a publisher and they were really interested in my story and they also love my photography. So their idea was that I would tell my story about autism and the spectrum but also include my photography to tell my story in a unique way. So that's what we did for my book. We included photography with my story and I like that because photography is for me a way to express myself and I feel like I'm able to tell the story in a way that is really real. I started writing it in 2017 and it was published in 2019 last year and you know I haven't done much promoting of it on social media and stuff because I don't want people to feel like I'm profiting of autism or and by the way like writing a book that's not gonna make you rich like it's something that I see always on social media or writing a book about it you know profiting off of it when really like writing is not a very profitable thing. In any case I loved writing that book and the pictures and being able to tell my story and showing both sides again. I don't like that word but I think you know what I mean of the spectrum or aspects of the spectrum you know and how different autism can be for everyone and that's also what I do on social media. I try to show this but always with a lot of love because it's important for me that people know that autism is not a gift for everyone but also that it's not something to be scared of and that you know autistic people are just as worthy of love and you know having jobs and being respected as anyone else so it's really a balance between the two and that's kind of what I do on social media or at least try to do. Well I've had a look through your Instagram and your pictures and stuff and you are right like your photography is really good. Thanks. It definitely tells like a story in each picture that that you've posted. Would you be able to give us your experience with being diagnosed and the kind of journey that you went on to get your son diagnosed as well? Yeah so my son got his diagnosis first so Charlie was 22 months old when he was officially diagnosed. We noticed that he lost his words when he was around 18 months which was really scary as a parent. He only had you know a dozen words so he wasn't like a big talker or anything but you know he was at the edge where we expected him to start talking more not less so that's when we called early childhood intervention in the United States. Come to your house and do you know free assessment or shift depending on your income and Charlie qualified for all they had to offer so if it was speech therapy, occupational therapy, parent support but after a few months they told us that it was basically out of their league and that Charlie needed more health than this so that's when they recommended we get him evaluated for autism and he took the M chat. I don't know if you have that in the UK probably too. M chat. M chat yeah it's 20 questions and I think a score of seven or higher is indicates okay you got to get you know your kid evaluated right away and so sort of like a personal thermometer to you know on whether to go in to get a diagnosis. Yeah yeah exactly for like parents who you know are worried they can do it at home and very quick and Charlie scored 18 out of 20 so like you know really a lot of concerns obviously and yeah he was diagnosed at 22 months old by the developmental pediatrician here in the US and from then he started ABA therapy so that was Charlie's story. After he got diagnosed is when I decided to seek a diagnosis actually I don't like that expression. I went through a therapeutic assessment to know why I was struggling because I was struggling in a lot of ways that were similar to Charlie but I didn't see how at that time it could be linked to autism it seems so crazy to me that I would have lived with autism for so long without knowing you know I didn't know that much about autism then. I needed help from a professional so I went through a therapeutic assessment that was like 20 hours of questions and talking. Yeah I was really really intense and at the end of it you know that you got the right diagnosis at least you know it's not a little thing. 20 hours of talking yeah well not in a row. Oh okay okay I was just picturing you just like nodding off in an assessment just like can we please stop talking this is too much. That's funny no I couldn't do that either. Yeah that that was it and at the end of the 20 hours over a few weeks she told me that I indeed had autism level one obviously yeah and I felt relieved in somewhere that everything I had been struggling with as a kid in France had an explanation because I always felt like something was wrong with me you know like why am I like this or even as an adult like why can't I go to the grocery store without freaking out when people go to Target it's a store here like to have fun and to me it's like so stressful and scary to be inside a store and it's like what is wrong with me and now I have all this you know so many things that started making sense after that like I can't get gas if I'm going to a different gas station than the one I know the buttons are different like little things like this and I had very hard time maintaining friendships making friends yeah it must be quite really good like I was diagnosed quite early at about 10 but I only really started reading about autism when I was in my 20s at university and it definitely does it gives you a new lens on your life now helps you figure out why things are happening I guess if you don't if you didn't know that you're autistic then you would you know assume that you were like a bad person or that you just weren't capable and it must be a very scary thing to deal with for such a long time yeah yeah it's really interesting how I mean a lot of people are starting to get diagnosed later in life but yeah I always wonder like would my childhood life have been different if I had known before I don't know it's something I will never have the answer to but you know I was still in my mid 20s so it wasn't super late either you know yeah but there's some people who are diagnosed like when the 50 or 60 yeah that's that's that's like you've learned that's like at the stage in life where you've learned how to cope with everything and you just sort of you've got your life together and then someone comes along and says hey look you've been dealing with like so much of this stuff that you have no idea about yeah I can't imagine that that's all um because obviously he said that you saw a lot of your own traits and your own behaviors and difficulties in your son has that given has your son's diagnosis and his sort of development given you sort of a different perspective on yourself yeah yes and no like there are so many ways in which I relate to Charlie for instance the noise like it's something that's funny in a way it's not but when there is a loud noise we're always the two people within half a second with you know covering our ears and people just look at us like what what they didn't even hear anything you know yeah it's some kind of connection here on how autism affects us in similar ways but seeing the difference in like communications for instance between Charlie and I it's given me a different perspective on autism in general not not just my own but that's what motivated me to to talk about it just so people can really understand the wide range of experiences of autism that's a very good cause to kind of shoot for like I I don't understand why I do I do understand like how people can be about personally you know if you're going out of your way to try and change people's lives and make a positive impact I you know all this this abuse that you've been receiving just it astonishes me that people can the I think it's the combination of the internet and it's also a lot of different cultural factors that are that are coming into play as society progresses but yeah so one of the things that I've been trying to think about for like a while people don't like anything relating to levels of functioning in the autistic community I think I'm pretty sure I understand where it's coming from because it's kind of like it's I think it's mostly people who would be diagnosed medically as being high functioning don't particularly feel like that label applies in in all sense or at least to an outsider really encapsulates their experience it makes it difficult though so you know I work I work in schools and I I meet a lot a lot of kids with with autism who vary in their ability to be independent and so it's it it's one of the things that I've been thinking about for a for a while now because it's like how do we how do we talk about the the kids and the adults that can't live on their own and can't so function independently without using functioning labels it's like right yeah I think it's it's important though to you know to make the difference you know like how before it was as burgers and then autism like it was different and I feel like that was perfect because it showed people that the difference in you know skills and being able to be independent and communicate and you know functioning label I don't always see them as harmful because when someone says low functioning I don't see it as oh he can't do anything look at that no it's more of you know he's gonna need more support rather than he can do this so maybe that's the way to phrase it a higher higher support or severe you know I use severe because I feel like it's you know it's one word and again it's not I don't find it degrading because it's just a way to indicate that someone needs more help than another person you know it's not their fault so I try you know I say I have high functioning autism too there's there's a balance and I'm sure we could find a middle ground between functioning labels and using nothing at all just so there is a way to tell the difference you know maybe we'll find a way someday yeah I think it's it's a lot like a lot to do with words and how they appear and make us feel so things like severe and autism combined kind of you know no matter the intention and meaning behind the word some people I don't think can get past the the actual word if that makes sense like in this society we take things for at face value and then leave them so we'll see something the user word that we don't like we say don't use that word then we get on with our day or we but the thing is especially in your case making making that distinction yeah making that distinction between people who can live on their own and can you know they have difficulties they have a lot of difficulties whether it's like social or sensory or executive functioning but they can live independently in a lot of cases whereas when we're talking about someone who's more low functioning they can't what I was wanting to you know to ask is to mention is that that sort of culture of getting quite upset at someone because of the words that they use or the the concepts that they use that other people don't agree with and people who reply and react to those things may only be sending like a a single line of disagreement or hate or something like that but for people like yourself you get many of those and I'm I'm guessing that they kind of sort of stack up and they don't really make you feel that comfortable on social media terrifying could you tell us a little bit about your your experiences with online bullying or harassment yeah so you know like I said to me it's important to show all aspects of the spectrum because you know on paper I have the same diagnosis as Charlie but in reality he's probably gonna need someone to take care of him for the rest of his life and I don't know if you're able to find a way to communicate whether that's verbal or not we've tried so many things from PEX AC go talk sign language and of course you know talking so just to show you that we're trying everything to get him to communicate with us and right now he can express basic needs such as I want plus item is AC and he has like 20 word approximation he has apraxia too so it's just you know it adds up but it's important to me that people see the difference between both sides again that word of the spectrum and for autistic adults a lot of them they find this offensive that I use terms like severe autism or that I put my son in ABA therapy there's a lot of controversy about ABA therapy and a lot of misinformation too for instance autistic adults say that ABA therapies don't try and teach autistic kids to communicate unless it's a verbal form of communication talking but that is not true at all because like I said the first thing they tried with Charlie when he was two was PEX you know the picture communication exchange communication program where the kid gives you a little picture to tell you what he wants that didn't work for us but like we tried a lot of different form of communications and another miscommunication misinformation about ABA is that they prevent kids from steaming and they will only do it if the kid is harming himself like they don't stop Charlie unless he starts he has a steam where he just like hits his face and he even got a step infection from it because you know he cut himself a row and he got infected you know that's when you stop it and I don't think it's bad to say this you know like why would I want that and you know some kids like head bang and they can't control their steams like in any case I'm talking about all of these things on social media and they don't agree with me so then I get bullied and I use that word and it's a powerful word but it is absolutely what it is because it's not one comment here when one of them comes I'm sure they post my post in one of their private group because every time I get one comment they're also like dozens and dozens sometimes hundreds of the time coming to attack me on my post yeah I have like a folder with all the screenshots and it's very hurtful stuff like hearing that I'm an abusive mother that cps should be called on me all of these things oh and I'm being told all the times that I'm ableist or that I have and then when I tell people but you know I'm on the spectrum too as I said I have self internalized ableism so basically I feel like I can never win and it's frustrating to me because I love a lot of things in the neurodiversity movement like I think the concept is good but the way people are going about it and taking their ideas too far is just hurtful for the autism community as a whole and I've talked about this with some of my my autistic friends on instagram and every everyone that I talk to always has this deep-seated anxiety about saying the wrong thing like these are people who follow this stuff and and sort of tweet and use you know use things like ableist and and all of that stuff and they really struggle with the with that anxiety they don't want to say the wrong thing I've had people who have joined the autistic community and have been very very much shunned and put off doing their own advocacy it's very frustrating to for me to hear stories like that because it's it's very much just a set of jargon that people have constructed just over the time of social media everyone's trying to be more socially acceptable and and trying to you know figure figure out what some nasty other people are doing doing to them and it just it just feels awful you know I consider myself to be quite open-minded and I do like to have discussions rather than you know as as has happened to you sort of make those snap decisions about someone and then push them away and trying to bully them and and make them feel terrible when in reality they probably haven't even read your book and don't really understand who you are as a person yeah that's true you know and I feel like I'm pretty balanced all things considered too um and that I could find some middle ground with them but when you're getting insulted on each post and I mean constantly harassed by the same people it's no like it doesn't make me want to have conversations you know just last week a mother lost her life who was an amazing autism advocate um in a house fire I don't know if you've heard about this in in the US she had a son with severe autism and she uh he didn't understand that he needed to get down you know the house was on fire so she went back inside to try to to save him from from the fire and telling him come down you know we got to get out the house is on fire but he wouldn't and he was a he was a big boy he was 15 I believe and they both passed away in the fire so she passed trying to save her son and what happened two days after that is that some of those actually autistic you know it's the hashtags they used the neurodiversity movement posted a blog about insinuating that it was a murder suicide and that she had you know set her house on fire on purpose and you know the the family saw the post and they apologized after that and took down the post but it just to me showed how much hatred there is against autism parents I know this term is also frowned upon autism mom autism parents to that even after a mother dies trying to save her autistic son like they still managed to you know go after her it's just like so it affected me so much to read that yeah you know I really wish they would chill and not attack people all the time because there are so many parents who would listen to their experiences and what they have to say if it was done in a way that is not aggressive for instance I I don't mind if people say I have autism or you know person first language or I don't mind and attack all parents who say their sons have autism like if someone says my son has autism just said the autistic community doesn't like that word but I'm like but that's not true though it's just you know you and your group of people because I talk to a lot of autistic people who don't care either way you know as long as it's respectful I don't mind if people say you have us burgers um you have high functioning autism you are autistic you have autism it's it's okay I know people don't they mean well so just very um it's like with the world has been trained to focus on the very superficial meaning behind things like you use this language so this means that you're a bad person inside even if you don't know it it's very I think it's just awful because I think if people would actually sit down and talk or listen and try and try and be respectful each other we could you know this divide between autism parents and the autistic community would be smaller you know or at least just a little bit more integrated what I like to say is everybody can be an asshole like you can be an autistic asshole you can be a mother or an autistic person and you can be an asshole everyone can be one you can be a neurotypical and you can be an asshole it doesn't distinguish based on based on what you believe it's just about whether you're willing to hear people out and sort of try and find common ground I think I agree apart from the the messages and the the comments and the the bullying have you ever tried to talk to anyone from from the autism the adult autistic community have you managed to find someone who gets what you're saying and doesn't shun you for it yeah I actually two people more than two now three people who used to be part of the actual autistic community it's funny because it's just a hashtag but yet it's also a community you know or anyways they left the the community and then reached out to me to uh to apologize and that was so nice to hear from people who used to you know be part of those who attacked me online then uh come around and yeah I also talk about two people I mean who I've never been part of the actual autistic community but who are on the spectrum themselves and yeah you know something that's really sad that I talk about in my book too is that when I had a I got diagnosed with autism I thought that I was gonna have that I had found my people that I was gonna have somewhere where I belong finally and it's just been the worst you know I was bullied in France at in high school but nothing like what I've experienced by people who I feel like should be my own you know that I I thought we were gonna be like a big family and all in this together and so it was really heartbreaking to feel like so rejected and yeah that's another sad thing about this that's awful I'm so sorry why it's it's it's really awful yeah there are some nice ones you're right you know like there are souls everywhere but there are also nice people everywhere it's just about it's about finding the uh the nice ones yeah it's so hard to find why do you think there is such a big divide between the autistic and the parents communities not just for yourself but sort of the wider community I think because first of all actually autistic are very intense in their views and advocating and parents feel attacked and when you feel attacked it doesn't make you want to you know listen necessarily which makes the actual autistic community even more angry and it's just like a circle but also I think there is a big divide because those actually autistic who attack parents are and I'm gonna use that high functioning for the most part and parents you know often have sons who are more or daughters severely affected by autism so they see the difference between you know someone who is able autistic but attacking them at right this moment you know on social media and they see their kid at home who is you know not even able to communicate to get a glass of water and so it's hard to understand the actually autistic perspective when what they see at home is so different from the experience of the people attacking them and I think that's making the divide be you know bigger yeah yeah I can I can definitely see that one one thing that I have noticed as well is basically when I started doing my podcast on my youtube stuff I joined many many different groups I joined some autism only groups I joined some open autism related groups this is on facebook and I joined some parent groups as well one one thing that I've you know I've found is that there is a lot of hate brewing up in these these groups like from both sides you know like autistic people saying oh god like look at these people they're they're torturing their kid and or I've had such a you know I've had a really horrible experience with ABA and you know this is a common practice and then on the other side with the parents I see you know look these people don't understand you know my kid these people don't understand like what I've been trying to do as a parent and and sometimes they can be quite mean and vindictive towards autistic people in those groups so I definitely think that the the divide is it's very much a product of segregation like we've got a very big mentality of we're into fight it's difficult to to to try and bring these people together without having that ingrained mindset of these people are the enemy we need to prove them wrong we need to show them how they're doing wrong rather than kind of chatting like exchanging ideas and trying to connect and reach some common ground yeah that's that's that's my opinion on it and it's it's something that I've been you know as I said been thinking about for a long time my mom like she's an autism parent she she has you know ideas that differ from some parents but they but within that community they talk about it and they they sort of connect but the other community is involved in that sort of fighting mentality it's very difficult to sort of bring people together in that sense yeah extremely difficult one of the the aspects of you know what we consider to be evil is believing so much in something that you go to the extents to bully and and hate or seek revenge on good people and it's not necessarily a conscious act but it but it happens right it's like you've got justification to do it that makes sense in your eyes what ways do you think that we could possibly bring these people together and sort of open that dialogue and then get rid of all this bad blood it's a very difficult question to answer but yeah you know I think that both sides have to understand each other so I I get it you know actually autistic want to be heard because it's true we're the one living with autism and some of them for instance did have bad experiences with ABA and I don't want to invalidate them you know just because my experiences have been great doesn't mean that theirs you know yeah but so I think it would take validating their feelings while having them understand that you know things have changed and parents are not the enemy we want the best for our kids and also it would take actually autistic not you know like there there is a group with like five six seven thousand people that is just too shame autism mom like that is not okay that's just like straight up bullying you know so they need to drop that aggressive way of advocating and talking to people because you don't get anyone to listen to you when you do that and I think parents will be more likely to listen and make them feel validated and and heard if that happened and I also think that if we're gonna be talking about this subject we need to drop the puzzle piece and you know those things that are like they don't do anything for the autism community to fight to fight about whether the puzzle piece symbol is harmful or not or whether you know someone prefers to be called autistic or person with autism you know let's focus on the things that are actually going to help the autism community like a be a therapy that's a big issue because that's something that can possibly help so many people yet there is so much so much misinformation right now because 20 30 years ago it wasn't what it is now and I think that's its subject we need to talk about just get out of the way so we can find some common grounds and there are actually some groups where both autistic and parents and professional are trying to not reform maybe yeah but you know come together for a solution so that's brilliant so you've got lots of practitioners and parents and autistic people having that that dialogue and like talking about some of the aspects of it that's really productive that's that that's really great to hear yeah obviously when you get into this if you if you shoot straight for the media like if you're autistic and you you go online and you find these concepts and these these people with these these ideas and these emotions behind things it's it's hard not to turn a blind eye and not read into it a bit more an ABA was definitely one of the things that I personally didn't look into you know I just yeah ABA's bad like I hate it it sounds horrible they torture these kids not good but no I know I know but you know that was my my gut reaction and I know it's it's it's definitely something that it happens in everybody but I think that the difference is being able to sort of just suppress it a little bit and realize that getting more information on the topic and getting over people's opinions is a lot more beneficial to yourself than sort of putting up a wall and yeah podcast that I that I did with Michelle Rogers we were sort of talking about ABA because I work in schools and some of the practices that we do with the children are ABA based as you said things like with the pecs and the the visual cards and the timetables and wait ways to help them communicate and looking looking at sort of ABA and on paper and sort of looking into the research like it does seem to work you know like I'm not going to say that it doesn't work and you know the more that I'm learning about it the more that I'm realizing that these people who are grown up and and gone on social media to talk about ABA have that experience of ABA when it was you know sort of first being reformed and kind of used and I know it's been used for longer than that but I think it has changed a lot well and if they're able to talk about it on social media 20 years later maybe it did work because I would love for Charlie to be able to you know give his opinion on autism on social media 20 years from now mm-hmm I think it's it's a lot to do with people who are sort of I guess subjected to bad practitioners so it's not necessarily the practice that's the problem it's the the way that it's delivered exactly are they too rigid with it are they too loud and and dismissive and they don't use enough positive feedback and they don't give them breaks and they don't make sure that they enjoy the sessions like there's a lot of factors that come into that it's not necessarily the the protocol or the things that you do it's where for that teacher is good like what they do and they make sure that the child is happy right yeah I mean there are you know if you go to the doctor and you don't like him he's bad you're not going to stop going to the doctor it doesn't mean that doctors are bad you just had a bad experience with a doctor and that's something that people don't understand is that just because there is you know a few bad therapists doesn't mean that the profession the practice of ABA is abusive and that's also where you know they could make a difference as autistic adults by just telling parents hey listen so ABA is fine just make sure that when you look for a center an ABA therapy center they are not doing these things but they are doing these things how about that isn't that a nice way to you know talk about the issue you know so you're getting they're getting their voice heard and parents are still getting ABA they're just getting good ABA and no fighting involves well there's you know like Michelle's child she I think is she oh god I can't remember her child her child is absolutely delighted to see the person that works with her with the ABA like in my mind I don't see how that is bad you know maybe they might some some people in the past might have very kind of draconic vision of how to help an autistic person but from from what I've seen in schools it it doesn't seem abusive no it's not and it's not saying that you know anybody out there who has experienced ABA in in the past and has had a bad experience that those feelings and that experience aren't invalid which obviously is you know something you've always got to think about but it's it's it's a different time zone it's a different method it's a different practitioner you know there's a lot of factors involved I think so I think in terms of bringing communities together I think for the large scale things I think we just need to work on seeing past the superficial stuff and shooting for really what that person is trying to achieve with their work if someone's trying to raise awareness of for example like with myself like comorbidities and autism then it should you know that that is my way of advocating and that's what I'm trying to get from it and if I use terms that you don't agree of it it doesn't get away from what I'm trying to do that's that's I think if we if we can get past that and we can teach people to be less emotionally charged about topics and and try and expand their knowledge and follow people that they don't agree with and and sort of hear them out and think about it and do their own research then those lines that are drawn in these social media platforms would you know ease up a little bit it's a good theory I don't know if it would work in in reality I think you'd have to change a lot of people's minds about a lot of things yeah okay so would you like to give everybody three main things that you want people to take away from the podcast anything that we've talked about that you want people to think about yeah I want people to know that autism is different for each person on the spectrum that's really the most important thing for me so I don't like when autistic people say we because like they don't speak for me and I don't speak for them either you know I speak for myself as an autistic adult and and for my son but you know if someone talked to you your experience as an autistic adult will be different from mine even though you know we share a lot of things in common we're all different just like neurotypical people are different too you know autistic people are different from each other so there is not one autistic voice and that's very important you know because when people read things about oh autistic people are like this or autistic people prefer that we say autistic instead of person with autism well no not all we're all different from each other another thing that's important to me is bullying and being aggressive when trying to get someone to listen to you is just gonna have the opposite effect I I don't want to listen to people who are just yelling at me and coming to my social media all the time like hundreds at a time to tell me that I'm abusive and a horrible mother that's just not useful especially since we have more in common than they think and I would love for everyone to come together like in the way I said for instance about ABA autistic adults can advise parents on what to look for in an ABA center instead of just saying a very drastic ABA is bad no it's it's not black or white you know there is nuance and that's where we can meet each other and that's what we should focus on I think the last one will be that I want autistic people to understand that it's possible to feel two ways about something for instance just because I'm gonna say my son has severe autism doesn't mean that I don't love him because I often hear that from autistic people well clearly you hate your son look at how you talk about him because I say yes give your autism to me it's a way to describe that he needs more help and you know just because I describe struggles because autism is not just a gift it might be for certain people but it's not for everyone and it's not a gift for me it's not a gift for my son either it's okay to have negative feelings about something you know we can't take it to the extreme of if a parent says that autism is hard it means that they hate their kid no no of course not but it's really heartbreaking when your son is crying for hours on end and you don't know why because he doesn't have a way to communicate like I'm allowed to say that you know it breaks my heart I'm his mom and I don't know how to make it better like that happens one time he was limping and he took like 30 extras to find out where the the fracture was just because he wasn't able to tell us where he was hurting we knew he was hurting because he was crying and limping and like that's hard and so autism can be really hard yes does it mean we don't love our kids no I love Charlie so much you know and I want people to know that I love my son I love Charlie and most parents do I mean of course I can speak for all parents in the world but I I know that all the ones around me on social media talking about autism they love their kids and want to help them yeah I appreciate that I think you've definitely summed up what we've what we've talked about I do think that there are a lot of difficulties but I think if we keep talking about these things then then hopefully we can make a breakthrough you know it's not it's not nice to have these divides especially when both sides are trying to in different ways and in with different things but we're all trying to do what's best for autistic people exactly and that's that's the kind of that's the kicker and yeah I think autism does as you said present a lot of challenges our school school and system and our knowledge about what is in parenting is still kind of growing and changing now in this in this present time with all that knowledge and stuff it does make parenting harder like it's it's got to and it makes teaching a lot harder as well yeah but that doesn't mean that you don't like them and you don't love them and you don't care about them and you don't put in effort to connect with them well I've got one last question for you this is an open question and it's it can be completely subjective to yourself or to your general view of autism or to your son's autism but what does autism mean to you a lot of things autism is a lot of things for different people and it means a lot of things for me sometimes I like my autism because it can create some funny situation and you know when I take things too literally and like you know crooks you know autism can be attaching I love when Charlie flaps his hand and he looks so happy sometimes he just starts laughing I don't know why and it's just so so sweet I like that it makes us see the world probably differently than other people whatever that means for each autistic person I also think that it comes with a lot of struggles and for certain people it's you know little struggles and for some people it's a lot of struggles and they're very intense and they're gonna prevent them from living independently so autism is a lot of things for a lot of people and I think that's really what I want people to take away from this this podcast it is such a unique experience for each person there is some good things and some things that are less good and that's okay because at the end of the day we all want the same thing we want people with autism to be respected and loved and to have the same opportunities and rights as anyone else and I hope we can all come together to to make this happen beautiful you bring it a tear to my eye that was such a nice thank you very much for that thank you I'm glad it's been really great to talk to you I don't think I could have found a better person to to talk about these these things with I'm so glad we did that yeah it is a potentially very inflammatory subject for a lot of people so I'm guessing that if you've made it if you made it to this to this point and you're from the autistic community then you know well done like it's hard to to take on board of people's ideas and and thought processes but it all it all goes down to you and what you think and the research that you do and the opinions that you hear out that's that's the point of this podcast you know and not everybody will get through to the ends and listen to it to it in with glee but at least we're talking about something that's important and that could change things for everybody hopefully we can hope we can try and that's that's the spirit that's the spirit that all that binds us together Eileen would you like to give some links out for people who want to follow your stuff or read your book and and all that yeah you can find me on social media at the autism cafe on instagram facebook twitter pinterest my website is the autism cafe dot com and my book is on amazon as a kindle and hardbook cover with all my photography and it's called all across the spectrum brilliant and I definitely do recommend you go and check out Eileen's account if only just to look at the awesome photography that she's uploaded I love the picture that you have is that you're somewhere where it's got boys will be boys but the boys is crossed out and it says what they're taught to be I like that one thanks yeah it's very nice it was a very hot topic wine it's very well done thank you well I really hope that anybody who is listening to this if you have any questions or you want to talk about this issue take it to the 40 ot podcast email me we can we can talk about these issues from a different side if you want so if you if you have any ideas on or stories that you want to share I am very open my inbox is very open to all of that please do not go on to Eileen's instagram and harassa that's not what we're trying to get from this please do not please do not I don't know how you do it like as soon as if I get a if I get a negative comment on youtube I think about it for like the entire day like I'm just like is my content actually bad like am I getting everything wrong is my brain oh my god it's so dysfunctional that so much it's yeah no it's hard and you get it on you get out on such a massive extent as well so well done for staying at it and and keeping going strong and being a good mom and all that stuff it's it's very admirable thank you so much and thanks for having me I hope we make a difference somehow and if you want to check out the 4080 podcast you can find it on spotify apple podcast and on youtube there's some other places that you can find it but if you want to go head over to my anchor profile all you gotta do is type in 4080 podcast sometimes slips up you can also check out my youtube channel as they're just growth for videos on autism mental health dating on the spectrum we've got a whole host of different things that you can watch through I have talked about this on the the previous podcast but I'm currently going through a very bad patch of mental health it's very up and down at the moment I'm back at work so there's there's that and I'm going to the gym so my plate is very much full of things that I'm trying to do to kind of keep me level so for the time being I won't be uploading a lot of youtube videos there probably one out every one month one and a half months depending on whether I've got time for it and depending where my head's at I hope that everyone can appreciate that and if you do want to stay updated with my life and the the other things that I'm doing you can find me on social media at Asperger's growth Facebook Twitter and Instagram very long outro apologies for that Eileen what what have you got planned for the for the rest of the day it's quite early for you in comparison you know it's very nice out because in Texas we get those summers where it's like 40 degrees Celsius every day and it's just getting nice so I think we're gonna go take a walk and I'll check out your videos too I've been so busy I'm meant to do it before our podcast and I didn't get a chance so I'll have to go check out your channel you do you do a lot of stuff so I understand that it's difficult for me to sort of find time to do that stuff as well so I completely understand I'll have to check out your book as well myself meaning to sort of um have a read of that is it available on audiobook or is it just no just keep kindle or or hard copy yeah okay well I'll have to check it out when I when I read it I'll probably make a little post about it I'll link it back to the podcast and stuff so thank you yeah thank you everybody for listening to this episode stay cool stay fresh stay always autistic and awesome you know unless you're not autistic and um I'll see you in the next episode later