Episode 39: An Interview with Sarah Hendrickx on Women and the Autism Spectrum

Curious about how sometimes those born female with autism present differently ?
Check out this fun and  interesting conversation I had with Sarah Hendrickx who is the foremost specialist on women with autism among lots of other things!  

Sarah is autistic. She has worked in the field of autism as an independent autism specialist since 2007.  Sarah has also delivered over 1000 autism training workshops and conference presentations internationally  to all types of professionals from educators and care providers to counsellors and lawyers. She has an unusually blunt and humorous speaking style which is more informal and 'says it like it is' more than many professionals. Many of her presentations can be found on Youtube. Sarah rarely does any public speaking these days due to health issues. She does contribute to occasional webinars and podcasts.

Sarah has written 6 books on autism - employment, sex and relationships, alcoholism, girls and women on the Autism Spectrum and also on the adult neuro-diversity spectrum. She has been involved in the development of training materials for the Dept of Education funded AET National Autism Training Programme and also spent three years working for the Ministry of Defence supporting autistic employees in science and technology. She was also involved in Scottish Autism’s Right Click Programme for Women and Girls and the National Autistic Society Professional Module for Clinicians diagnosing women and girls. She was Project Leader for ASpire autism mentoring project, and has worked in residential care and educational settings.

Sarah has a Postgraduate Certificate in Asperger Syndrome and an MA in Autism. She lives in the South of France with her beloved Keith, mostly riding her bicycle, talking to creatures and avoiding bread.

To learn more about Sarah's work you can go to Hendricks Associates

Transcript

0:08  
Hello, and welcome to the autism in real life podcast. In each episode, you'll get practical strategies by taking the journey into the joys and challenges of life with autism. I'm your host, Ilia Walsh, and I'm an educator and a parent of two young adults, one of which is diagnosed on the autism spectrum. Join me as I share my experience and the experiences of others, so that we may see the unique gifts and talents of individuals on the autism spectrum, fully recognized.

0:45  
Hello, everyone, and welcome. This is Ilia with the spectrum Strategy Group. And today's episode. I'm very happy to have Sarah Hendricks with me today. And I really appreciate you taking time Sauer to join me today. Hello, thank you. Thank you for having me. Yes, yeah. So my, you know, my background in knowing you, or hearing of you is when I worked at a Annie. And you have done, you know, several talks on, particularly women and autism. And I'm really interested in the topic. And I know, you know, I've touched on it tangentially with a few other podcasts that I've done with women, Becca, Becca, Laurie, and also Miranda Kay. You know, we've talked a little bit about it, but it was more, you know, kind of like on the outskirts, but we've not really talked about it directly. So I really wanted to get a chance to do that with someone who I know, you know, for the the crowd that I was with is like, ah, Sarah is the expert on women and autism. But first I'd like if you know, if you don't mind giving a little bit of background about yourself for our audience members who don't really know of you or only know a little bit about you.

2:06  
Yeah, sure. Absolutely. Well, I, I think I'm 52 I forget frequently, and I am autistic. I was diagnosed somewhere around my early 40s. Again, I can't remember that either. I have two autistic adult children, probably very likely an autistic mother, I have an autistic partner, and a whole ton of other nieces, nephews and other relatives with or without diagnoses. So that's the kind of personal stuff I suppose I came into the field of autism in the early 2000s. Working in a college with students as a support worker and educational support worker, and I began to work with students with Asperger's Syndrome knew nothing about it at all. And then through having some knowledge and through studying to be an adult education teacher, I then got a job working for a bespoke project for seven years, which was a mentoring service for young autistic people, mainly the Asperger non learning disabled autistic people. And I started delivering training, and along the way discovered that my partner Keith was autistic. And neither of us knew that when we met, and then I started writing books, because at the time, there really was very little out there. I think a lot of social media in terms of the way that the autistic community has grown, just didn't really exist, certainly not to the scale that it does now. And so the autistic adults were still they were they were kind of unusual and anomaly was very much male focused and took a number of years before I realized even working in autism writing books about autism, I still didn't really see a version of autism that fitted me. I knew I had lots of individual components, which I've later understood, all fit together to make an autistic profile, but at the time, they didn't have that reference point. So it took a long time for me to work out that I was autistic along that way. I ended up writing six books, the final one on on women, and traveling around the world, doing conferences, presentations, and all of those kinds of things. After my diagnosis, it took me about two or three years to tell anyone professionally, because I just wasn't sure how it would be perceived. And I think my own prejudice said, Well, maybe these people won't want to work with me. Maybe they'll think I'll be difficult or I won't you know I won't get I won't have an income anymore. But I think over the last few years the culture of knowledge acceptance awareness. of autistic adults particularly has just changed phenomenally. Certainly in Britain, it's, it would be rare now to have a conference without at least one autistic speaker. Whereas in the past even 510 years ago, that was that was really rare. So I suppose I've been very fortunate to be part of all of this at a time when and to me, it feels like it's changed enormously from an invisible bunch of people to a people who really have a voice, which is much more taken, taken seriously.

5:33  
Yeah, no, I totally agree. I think I, I've even seen an evolution in just the last, you know, 10 to 12 years, my son was diagnosed at nine. So, you know, we were fortunate, but now working with educators and learning a lot about, you know, early intervention and early identification. Even nine is, you know, now nine is late. So, so it's, it's really been an interesting, like you said, like, an interesting evolution. And I, I find it interesting. I did, you know, I do, I did read your bio, with, you know, several family members. And I think, you know, I kind of fall in the same category. I remember being asked by, by someone, you know, do you know, if someone in your family is also on spectrum? And I said, Yeah, I think I have a family Bush, not a family tree.

6:34  
Active as well, regarding the women thing. I know, I'm so bad at yours and knowing, but I came over, is it the aasa conference, the really big one in America. The people go to an annual autism conference. There's several, so I'm not really sure. The American Psychiatric Association is huge, really, really big, was the speaker when I went and I came and, you know, put my proposal in to do to do a workshop. And I spoke about women and autism. And this, the conference had at least 3000 delegates, and I had 14 people in my room. And I think 12 of them were autistic women. So the the interest and the knowledge and this I don't know how many years ago, it was maybe maybe five, six years ago, it just wasn't there there was there was nobody was interested, nobody thought it was a thing at all, even in a in a conference of that size. And now, we have whole conferences just about female, female autism, something I want to say just before we move on, just to get it out there is I have a minor concern about this gender ideation of autism. Because every now and again, I get somewhat, I get a male person writing to me saying, I will work I'm an autistic female, this is this. And I think it's important that we acknowledge although we are gender rising these these profiles of autism, that there are lots of non women who experience this profile. And equally there are women who fit much more neatly into this the traditional kind of male in inverted commas profile. So I think it's important that yes, we're going to use the word female and women, but it doesn't exclude other genders from from identifying with this peripheral.

8:28  
Right, I really, I really appreciate that, because it's something that I do talk about when I do my training is, you know, we do have sort of this, you know, this just to gender type of approach when we're talking about different types of profiles. And I do try to emphasize that we might be using those terms right now. But that's not you know, people will feel like they fall into a wide, I guess, spectrum also like an array, and I definitely think people will identify regardless of gender, with much of what we will talk about today. Sure. Good. Yeah. Yeah. So So when we talk about, you know, women in autism, often what I've experienced is that is there is a later diagnosis like much later is, I know for you personally, that is an experience, but why do you think that might be?

9:25  
I think when I when I wrote my book about women, which again, is now quite out of date, because there have been many at the time, I think I tried to do a literature review. And I, I think there was about 1212 papers, academic papers that I was able to review that had any mention of gender whatsoever. And obviously now, I think there's lots more and lots more papers specifically on girls and females. And certainly within that literature review, one of the papers that I found, had established that that the average age for a boy way to get an autism diagnosis within their sample group was five. And the average age for girl was eight. So even at a young age, there seem to be this acknowledgment, obviously, within this sample group that for some reason the girls were getting diagnosed a little bit older. I think, again, anecdotally, through my experience of the experiences of other people, such as Dr. Judith Gould, who works very extensively in this this area, is that, sadly, and forgive me if some of the things I'm going to say today are upsetting for, but you know, that society has a tendency to psychologically evaluate women and neurologically evaluate males. And so quite typically, I meet a lot of people who women who have been through a number of psychological diagnoses such as phobias, such as OCD, such as, you know, sensitive child and added all together, that kind of looks a lot like autism. And yet, nobody's putting them together. They're they're there, you know, I, the work I do now is mainly offering a non clinical assessment service, not a diagnosis, I'm not qualified to diagnose, I'm very clear about that. There are a population of people, and the majority of those are women, who just want to know whether they're autistic or not. They've done the research, they've watched the YouTube, they've done all the reading, they've had the big lightbulb moment, and they just want to know, and it's astonishing to me, some of these women have been through typical diagnostic process offers, often with the A das E, adult, diagnostic, whatever it's called, which is not recommended for adult women. And some of them have come out with a diagnosis of sensory processing disorder, anxiety, OCD, they just come up with this list of stuff. And I said, autism, and they go, Yeah, I know. But there seems to be a culture sometimes where that's just not being named as such. So right, the problem, I think, also historically, because the, the founders, if you like, of modern day, autism understanding, only had males in their sample groups, then we never really had a profile of anything else. And the all of the learning might own included, when not when I started to study autism, everything said it's boys, it's boys, it's males, that and so the idea of a female walking into your clinic, the idea of autism wasn't and isn't still on the radar of a shockingly large number of medical clinical professionals, they just don't see it that it's possible.

13:01  
Yeah, and I've heard in speaking with different people that, you know, some of it and let me know, what you think of this is, is that developmentally, you know, people born female just have a different sense of, I'm trying to think of what the words are, but what people have said is, you know, females are better at masking, and I'm going to use the word better, but I don't know if that's a good thing or not, are better at mimicking the environment around them or reading information in a different way than those born male, and that that could be a reason for, you know, a misdiagnosis or a later diagnosis. I then I'm curious, because I've heard it, and I've even said it, but I'm just curious if that's what your experiences? Um, yes, I

13:52  
think I think there's some element of truth in that. But I think from this, this masking word is, is, is interesting, it kind of sounds like it's always deliberate, or always conscious. And it certainly seems to be the case for a lot of people that that isn't always the case, that it's, I think, in a way, you know, rather than this idea of, as you say better at which I know you weren't sure about that terminology. It's it's some kind of, you know, it's it's resilience, it's survival, it's, it's what do I need to do, what do I need to do to be invisible? What do I need to do just not to be ignored or bullied or whatever, that it just feels just extraordinarily protective on a, on an almost primeval level, some people in the same way that may be the more traditional male inverted commas profile would be to just withdraw that, you know, that's the easiest way for me to just not engage with this thing. This social thing this, that's way too complicated way too flexible, makes no sense to me, I'm just going to withdraw completely. Whereas there does seem to be a tendency for a lot of women and some, some other other genders to try to engage. So it's kind of sleeping with the enemy, if you like. And we know that traditionally, and I don't hear this said so much, which is good, but but there used to be this kind of idea of certain types of, of autistic male who had an arrogance and a superiority, that they knew they were right, and everyone was stupid, and all of that kind of thing. And I come across that far, far less in females, it seems to me, they might think it, but they're much more willing to say, How do I just be like these people, I'm going to change my hair, I'm going to change my clothes, I'm going to, I'm going to get a spreadsheet, I'm going to work out, you know, how I literally some people, do they plan strategically right now to morph themselves into another, another person. So So sometimes it's subconscious. But sometimes it's very much a mechanical plan. Whereas to me, I don't know the word masking, it doesn't. It doesn't feel like it doesn't feel like it fits my experience. As a masker. It's not a word I would, I would use, I think, I think for me, the word I would use and and again, this is a word that a lot of women have used is this idea of being on. So when you're in public, when you're at an event performing feels too much, it feels too contrived. It's just an on and that's raining, that that all all systems are functioning, all systems are thinking all systems are making sense. internal monologue, what am I supposed to do? What am I supposed to say? That it that? Yeah, yeah. I'm not sure. I

17:00  
think. Yeah, I think right, that that? Yeah, I think that makes sense. I think many people will resonate with that feeling. And and I don't, I don't think it is deliberate. I think it's, like you said, partly survival. And, and right, like wanting to, and I guess, depending on, you know, what age group you're in, you know, wanting to fit in with your peers, but it doesn't really matter whether it's the 12 year old in middle school, or, you know, the senior in high school or college or an employment environment or even in a family function. It can it is something that I that feels like it could be just an automatic, and maybe have different versions. I don't know what you think about that, is there? Could there be different versions, depending on the environment that you're in?

17:47  
Absolutely. And I think a lot of people have said that one of the things they find quite difficult is when those environments collide. So for example, if there's some kind of, you know, wedding or an event where your colleagues might come, your family might come, your friends might come from different parts in your life, then you don't know who to be. And that's certainly something that people have said, it's not enter to be Who am I. And that idea of who am i is also something that comes up quite, quite, quite commonly. And my, my own experience of that, and I don't know whether, if anyone has ever seen me on stage or, you know, on YouTube, or whatever, it might be a surprise. But prior to getting on the stage, I'm my partner, Keith would often come with me, I don't travel very well independently. And I would be sitting in the audience saying to him, I can't do this. I can't do this. I can't do this. And what am I doing here? What are we doing here? Why am I here? Why am I here? Why am I reading this? I can't do this really properly, freaking out. And he calmly calmly sits next to me and says, Don't worry, as soon as you get on the stage, the other one turns up. He's right.

19:02  
Right. Right. It's, it's really interesting. Because so I wonder if when you think about this concept of I don't know who to be, I wonder and so from what you're just what you've just said, maybe the answer is no, or maybe or it depends probably the better answer. But when when people do get that diagnosis, because I like you said you do, you know, non clinical assessments. Do you feel that some of that gets goes away like that the sense of needing to have different, you know, versions of being on? Do you think some of that goes away or that people feel like they don't have to do that as much?

19:50  
Absolutely, it's absolutely huge. I would say that the majority of women that come forward for these assessments And again, it's a time thing, you know, maybe a child in the family has been diagnosed, maybe you've had access to, you know, the media stuff that's out there. There's articles, there's books, there's, you know, TV shows and things with autistic female characters in and that kind of thing. But there is an absolute age group, and the age group is probably kind of 40 to 60. On average, there are there are definitely people either side of that, but that's the age group. And it very much feels that it's something to do with kids growing up with pre menopause, with just all sorts of changes in life at around that kind of age. And these women are done, they are done with the work. They have been through every therapy, they've read every self help book, they've beaten themselves up, they've been reprimanded, you know, for just being wrong, they've analyzed, they've observed, they've tried absolutely everything they can to fit. And, you know, they just want to know what's wrong with them. And they've come across this idea of autism. And for a number of them, the way they describe it is quite astonishing. It's, it's, it's absolutely like a bolt out of the blue, that they've, you know, watch something, read something. And it's, it's huge, it's absolutely changed their life in absolutely in a moment. And then off, they've gone with their intense interest and researched it to death for a period of time. And then they and then sometimes they come and they talk to someone like me, or they go and find clinical diagnosis. And and I always say to them, why are you here, and they say I'm sure I'm autistic, I'm sure I'm autistic. I know, please tell me I'm autistic. It's, and I think that's also interesting that this diagnosis or assessment is not a tragedy, it's, it's absolutely, they found the key to everything. And, and they're so fearful of you taking it away from them that they're wrong, they're fearful to be wrong. And, and I say, like, you know, already, what do you need me for? And they say, I need because you know, you got to be honest. I'm certain, and because most of them are autistic, of course, they're certain because they've done all this research. And I say, What are you looking for, you know, just just, you know, you clearly think you're autistic. So have you go and, and they say I need permission, I need permission from someone some external source validation, I need permission to be myself, I need permission to state my needs to ask for what I need, and to live my life in a different way. And that that is that's, that's 70% of the people that I speak to will will almost have a word for word verbatim conversation that sounds like that. And so I think, as your original question is that, I don't know if it's a woman thing, I wouldn't like to say that that's not universal. Of course, it's not. But there's something about not finding it very difficult to give yourself permission to just say, screw this, I'm going to be mean now and do my own thing. That there's something about an external person, hopefully, whom you trust, that just says, Yes, you're right. Off you go. And

23:28  
yeah, I do. Yeah, I wonder if it, you know, there is I think, maybe a, a, a feminine element to that. Because I know, even in my own work, I've been, you know, I've been in therapy for 20 something years. And I too, have experienced many of the things that that I've read, you talk about, with, you know, kind of jumping around from different things have different interests. You know, just not, I think you talked about you and your partner being very different in how you present, right. And so, I wonder, because I too, have had the same, you know, looking at deep intense interest and looking at that external validation to just be be myself and I'm actually at that same age and I it's funny, you mentioned about forgetting your age, I told my therapist, I was writing her note, and I said I was 47 and I'm like, wait, no, I'm actually 49 Oh, you lost a couple of years. I said, you maybe just want to stay at 47. But But it's interesting because I wonder sometimes, you know, our, our, our The, the your environment and the society around you can also impact right that same putting, putting that persona on or putting your own needs behind other people's needs and and it feels like it would be similar to For many, many people's experience, but then this added magnification of like an autism layer. And I'm not saying that I, I haven't played with the fact that I'm I'm on spectrum as well, given my family history. But you know, in some ways I look at it as so what's my desired? Like you said to, to your clients, right? Well, what do you need me for? What? What's the desired outcome here? Right? Like, I just want to live my life and kind of set like you said, screw everything else and be me. So I'm, I'm curious, you know, what? How many women out there have experienced the same thing? And men to like this sense of? No, there's, you know, that it's all these other things that have happened in your life? It's all these other stuff? And then it's like, well, I don't know, is it? Or is it my response? is different than it would be if I wasn't autistic.

26:02  
Right? Absolutely. And that, again, is something that comes up a lot that I think it's I'm no psychologist, but I think it's fairly standard fare. That way, we create narratives that make sense of our lives. And, and a lot of the people that I meet, have made these narratives, the narrative will be, I was the only Asian kid in the class, it will be I skipped a year because I was gifted, it will be my family moved around a lot. They were in the military. You know, I was the tallest kid, the fattest kid, the shortest kid is a kid, the whatever kid, that's my narrative, I had trauma, I had abuse, I had whatever. And and then when you know that there's something there. You you then as someone trying with them, to unpick all of that is trying to kind of figure it out. It's not, you know, you can't disregard any of that, of course, you cry. But you're kind of trying to say, well, even if that stuff hadn't happened to you, who would you have been underneath? What would you say? Would you still have been the same way underneath? And, and, for me, that's the kind of interesting bits where you're trying to, you know, think what might have been the impact of this experience? And actually, what's not explained by that experience at all? That still fits in the autism criteria? And then, you know, so we're really trying to dig around to see At what age can we find evidence that these things were there that might predate some of these traumatic experiences or unusual experiences? Can we think Well, okay, you moved around 10 times, and now you're telling me that that's why you don't have many social relationships. Let's talk about your brothers and sisters.

27:58  
How are they?

27:59  
So we're constantly trying to kind of see if, if actually Yep, that's, that's clearly part of the picture. Or actually, you know what, I don't know that. That is because your experiences are not the same as other people who shared them. And right, oh, yeah. It's a subjective process. There is no definitive yes or short. I think all one of the one of the key things when I particularly when I come across people who eat transpires on or not, don't meet don't meet criteria. Often you can see why they think they did, because they so for example, I've certainly worked with people who difficult marital relationships and relationships falling apart. And the partner is saying, You're this, you're, you're you're controlling,

28:59  
you're cold,

29:00  
you're an emotional, you're,

29:01  
you're this, you're that and they've gone off and gone. Oh my God, that's me. I'm autistic. And quite quickly, we can often say, well, it's only that one person that so you know, what's everyone else saying about you? And often again, it's, it's for some women, they've really taken on this, there's something wrong with me, I need to be fixed. If I'm autistic that will explain why I've been apparently terrible partner or something. Another another little pattern that's come up a few times has been people who've been brought up in very strict religious communities, which have a very fixed structure, routine behavioral expectations of you. And sometimes if those are quite closed communities, there have been I have met individuals who've come out Have those communities, sometimes quite late in life, because maybe there was a marriage within that community as well, which may have ended. And they've come out in their 40s with no social circle with a real need for a regimented life, because that's actually all they've ever known. And so again, we we unpack it. And sometimes we find that Actually, no, you don't meet this criteria. And it's not it's not the opposite.

30:30  
Right, so so I'm thinking now, if we have listeners now who are saying, Wow, I wonder, I wonder, you know, and I think my audience are mostly parents, educators, and I do have some adults. And I would say, many of the educators are what I call doubly qualified, right? So they're a parent, or an adult and an educator, or all of the above? What, for the first for those who might say, Oh, you know, yeah, I saw it in my in my kid. But wait, I wonder if what would be some of the things I would say maybe like, some tidbits or food for thought that they might think about when they're, and you've given us some already, but things that they can think about and say, Oh, I wonder if this is something that I should explore further.

31:22  
Okay. I'd like to put a disclaimer in here that I absolutely. Thing is or is not definitively, a phenol, for sure, for sure. We're very much talking about a kind of package of things. I I think one thing that's quite simple is that if the strategies for autism work, then then that might be something that is worth considering. So for example, change, you know, planning, things, things not going well. Some people are very averse to those kind of things. And some people are just averse to those things for all sorts of reasons. You know, some people just like to be in control with wanting to do with autism at all. But what I've found is that some of those people, if they're not autistic, and you suggest to that person, well, you know, let's have a plan a routine, let's fix what we're going to do, then some people really don't want that. It doesn't help. It doesn't make them feel less bothered, less anxious, you know, easier, more flexible, it just doesn't help. I think the other thing in relation to that is anxiety itself, which which we we understand and accept is a is a rational response for autistic people living in a highly confusing non autistic world. Right? And the strategies for that anxiety are specific to autistic people. So for example, again, using that concept of change, that if you are anxious, because you don't know what's going on, and we put something in place, that's quite an autistic response. Most people are not anxious about the same things that autistic people are anxious about. They're not and again, if somebody is shy, they're not necessarily rehearsing a conversation planning a script, ruminating, analyzing, they're the kind of behind the scenes stuff is different in autistic people. I think I'm explaining that very well. But I think it's not behavior that makes you autistic. It's the behind the scenes. It's the cognitive stuff. It's why do I avoid people? Why do I wear sunglasses? Why do I have a schedule for my day? That's where the Autism is in the why, rather than the fact that I do it or don't do it?

33:56  
Right. Right. Right. No, I think that I think it does make sense. And I think that's, I think that's part of the exploration in determining whether, again, whether it's, do I think that that I have autism or not, or a just a further exploration of who I am as a person and why do I you know, what makes me tick.

34:20  
Also, you know, back to your question about, you know, what my educators or parents think about ask your children, young people, adults, why do you do that? Why do you separate your food? Why do you line that up? Why do you just ask them? And, and that's the insight, and some people will just have this astonishing insight that will just Whoa, just absolutely blow you away. We don't know. We just sit there from the outside. Kind of, you know, making these presumptions often using these words is really fussy eater or Yeah, he's really this or that. But actually, if we just ask that the reason that some people don't eat two foods together is because it makes them Third food. And before? Does that make sense? You told me, you're mixing colors, you're mixing flavors. I asked for chicken. I asked for potatoes. I didn't ask for this chicken, the potato thing that seems to be emerging in the in the other part of my plate. My useful sense and logic, but you look from the outside and you don't you just don't see it. But But surely that's all for us, isn't it? That's

35:34  
three. No, I

35:36  
think that's that's a beautiful way to say it. And I think those who either live with autism or have, you know, close family members will appreciate that particular analogy, but I see it from a different lens, which I think is awesome. It's funny, I have a friend who she would say, you know, I'm a picky eater, just like you'd say, I'm particular. And then you know, it was just spending more and more time. It was like, Oh, well, why why don't you like mushrooms. And she's, she's like, honestly, I really just don't like the texture, because you know, there's really not much flavor. And then once you mix them with other stuff, she says, but the texture just makes me crazy. And then she would do that with like mashed potatoes or other things that she's like, oh, wow, maybe, maybe I do have some sensory stuff going

36:23  
on and find them in patterns. So if I food is always something I ask people about, because it's very interesting, because it's something we do every day, we have no choice, you know, to fuel ourselves. So often there are patterns in either repetition, or preferences for textures seem to kind of go together. So you'll find people that don't like anything that has that particular texture, even though the foods may be incredibly different. We might be talking potatoes and bananas. And I don't know, you know, something totally, totally different. And again, I think sometimes people don't, they don't recognize that actually, there's a theme here. This is this is not someone individually disliking things, they are disliking things that all fall within the same category and right, texture is far more likely to play a part than flavor.

37:14  
Right, right. Right. Right. Exactly. It's it's different than I know, it's, it's a Yeah, it's a thing for a lot of people. Right. And I would say, so I'm curious, I know, you mentioned food, but sometimes sensory type of input is something that we would amend maybe that's just maybe it's just, I'm, I'm putting this together now, as we're speaking, but you know, as, as adults, when we look at different sensory types of input, you know, it can feel like, oh, wow, I don't like that type of touch, or I don't like those types of scents or I don't, you know, and then you start looking at them, like you said, as a package. And it's like, Oh, I didn't realize there is this pattern to this particular scent, or it's the same ingredient, you know, in all of these different types of candles or perfume? Yeah,

38:08  
absolutely. And it's a constant voyage of discovery, certainly, for me as an adult to just keep putting these pieces together that have been there most of my life and been labeled in different ways, by me by other people to suddenly go, Oh, yeah. Okay, that that's, that's interesting. And obviously working with other people. Yeah, I mean, lots of people who don't separate their food and all that kind of thing. And, and I, you know, and I think to myself, well, I don't do that I didn't do that. And then you start to look at your own systems. And then I realized that actually, I have a completely different system. It is a system that you know, I actually don't like eating singular foods, I need them to be multiple foods on one, you know, fork or spoon or something that that's deliberate, and that I'm constantly measuring the amounts of each of these things before they go into my mouth and there is constantly looking at the system, but on the outside, I don't look like an autistic eater. Because the spoons up and shoveling them in I'm not frowning my plate, you know, separating things. I'm just diving in and having a great time. But I eat Oh, there's a whole bunch of stuff going on. And don't you dare steal one of my potatoes because that was accounted for. Wow, it sounds like a dinner I may have had the email thing. That's what the women are doing. The women I think are just sitting there, you know, frowning about this stuff, wanting to not make a fuss because, you know, it's that it's nature nurture mixed together. If you've been getting messages from since you were a young person that says you're not quite right, you're just not who we want to play with. You're a bit strange. You've got different interests, you're, I know you're, you know a bit particular about things. That's what you grow up with. And so you Yeah, the autism may have been there. That's that's your that's your nature. But everyday life has got this nurture on top, which just says, You don't fit, you don't belong, you don't fit. And despite all of your efforts over the years, you know, you still don't fit. And I think that's why these women come at this age and they say, I'm done fitting. Give me a new ticket, and I'll just go and spend the rest of my life shouting at people and say no.

40:31  
So So I'm curious what your opinion is with people who. So here's an example and my son will use it when he speaks sometimes is a for example. He, he never as a young, you know, when he was really young, he didn't like jeans, right? Or any tight he preferred, you know, more elastic branded pants, let's be real. I think most of us prefer that anyway. But anyway, especially now, right? But, you know, he would go to school, and he would see his peers wearing regular jeans. And at one point, he said, I want to be able to wear jeans. And I said, well, but but you really don't feel comfortable in them. But do you want to try and I was like, the only way to kind of, you know, wear them is to try them and see how they do you know, is it something you can tolerate? Maybe just for school or whatever. So, you know, I wonder how much you know, then it's like, do I feel bad? Like, did I make him wear jeans? And I don't think I did? Because I think he asked so I think that's okay. But But I guess maybe again, we're asking the why here, right?

41:51  
Yes, absolutely. Yeah, I think I think this, again, I think it's a human nature. That is sometimes I been in schools or conferences or whatever. And people have said, Well, how come this person can do this thing in this setting, but they won't do it in this setting. And so that is presumed to be contrary, you know, attention seeking or whatever. But I think that's kind of the same for all of us. I think partly, there's a there's a value judgment given to something. So for your son tolerating some uncomfortable genes in order to gain some social acceptance is almost like a little balance a little set of scales, where he's kind of decided that actually, they tip in favor on that, on that one occasion, they take favor of that social social acceptance, it might be that you know, at another time in his life, that that's not so necessary or not so important. And you know, what, genes are no longer tolerable? Because they don't make any sense. Yeah, so I think there's a sure there's a consistency expected often in autistic people, which non autistic people don't apply to themselves. I think the other thing is that things are cumulative that I, you know, I know, where I am, we have to wear masks all the time, when we when we go out. And the wearing of a mask, obviously COVID is hugely reduces my capacity to do anything else, I just find it it's incredibly hot, it seems like my glasses, it presses on my face, I find the physical experience of wearing it extremely uncomfortable, it means that I can go to a shop for maybe half the time, the half the length of time that I would normally be comfortable with, it means my ability to process conversation and everything else is hugely reduced, I'm exhausted by that experience. So to some degree, some of this is cumulative. It's not just one thing I have trouble with, but but you could say that the mask has just tipped me over the edge from something which is okay into something which is, is really really, you know, finishes me off for the day just to be in a shop for half an hour or something. So, and again, I think we always think about that, that if you've only got one thing going on, you might be able to cope with it. But if we've got a whole bunch of stuff, new places, new people uncomfortable jeans, smells, noise, whatever, then overall capacity is going to be reduced and that doesn't make you contrary it just means that you're full and that sometimes you're not full and therefore you can cope with more

44:39  
No, I think that totally makes a lot of sense. And you know, again, I think it's you know some sometimes and I think it's also day to day dependent maybe our to our right one has to do

44:52  
this the same for all humans but for sure, somehow it there's there's a consistency expected in autistic people that other people just don't seeds were born to themselves.

45:02  
Right? I said, I just had this conversation with an educator too. And it's, you know, we're looking at creating, you know, education plans. And in creating them, we are applying this set of goals and expectations on kids who have an education plan that might not even be realistic to, you know, there appears. So it's like, what are we doing? When we're creating these things? We need to be really

45:29  
home, you don't know what's Sure, you know, how much sleep? Did they have? What did they eat them? Favorite jumper in the wash? Or would you just don't know what's adding to that cumulative capacity? Really? Do we?

45:42  
Right, right. And then we haven't even begun to do whatever that task at hand is, is either going to school or going to work or sitting down for that meal, right? We've had all these other things impact us before we even begin the task. And so yeah, I really, and I've been emphasizing about just bringing that awareness to Well, of course, to families and educators, but also to individuals about hey, you know, I think like you said, we can be so self critical that we forget that we're also human.

46:21  
And again, one of the things that people who take on assessment, diagnosis, self diagnosis is, is is they say, I want to be more compassionate to myself. And there is a comparison often and again, this seems to be a more female thing that people are looking around at their peers and saying, oh, but they're going to work full time. They're there, they've got, you know, seeing their family, they're doing hobbies, they're doing all of these things. And you know, I can barely get through the day. And part of this diagnosis, I think, is a recognition that your capacity may be less than other people, and that your expectations of yourself occupationally, personally, they just have to be altered, because it's not worked when you tried to meet the norms of society if that's really failed you and made you very ill, then logically, we need a new a new set of rules to follow. And and I think that's very hard for people to you know, to think well I'm I'm physically able, I'm intelligent, your why is going to the store absolutely wiped me out what why what's wrong with me, by the autistic perspective just says that living in the world is just cognitively harder for a lot of people to make sense of things, and the sensory input and the change and all of that kind of stuff. And it's really hard. I didn't get it. I haven't I haven't accepted it. I still constantly saying what's wrong with me? Why am I so tired? I haven't done anything. And it's just that Yeah, my capacity is super low, super low.

47:59  
Right. And I think I really liked that you said that, that people want to be more compassionate with themselves. Because, you know, especially now during this, you know, locked down COVID time, it's been really even an extra struggle for everyone. But then having this, you know, this reminder that, yes, it's okay to you know, be compassionate with yourself, you don't have to compare yourself to other people, maybe maybe this experience will allow people to hold on to that a little bit more, I'm hoping that that could be a positive.

48:35  
So I have to say that, that. And this is not everybody's experience. But I would say that the vast majority of autistic people I've spoken to, through in through through confinement and lockdown often have never been happier, that these social demands are not there, their anxiety is lower than mental health is better. That, you know, a lot of them are just having a wonderful night, when I know that people are struggling, and that's not to take away from that. But, but that would be my experience that that people are finding it a relief. Not to make excuses to not go places to be able to manage their routines do not have to leave the house. You know, certainly that that's

49:21  
it's making it more socially acceptable to be able to do all of those things and to not like you said not have to make excuses for it. Absolutely.

49:28  
Which is just work in itself to have to think oh my god, what am I gonna say or having to do? And so it's just like, Oh, no, it's

49:36  
dangerous.

49:37  
Sorry. And that's it. Easy done and done.

49:43  
Exactly. Wonderful. Okay.

49:49  
So I know you do so many other things and I've I've kind of perused your website. Um, you know, what other what other types of you know, information can people find when, you know, I will put all of your information in the podcast description where to find you? But what can you know what other type of work can they find that you do and your organization, you have several people, you know, doing work with you?

50:17  
Well, to be honest, earlier, I do very little. I completely and utterly burnt myself out about three or four years ago, very poor at recognizing my own limitations and became fairly unwell physically and mentally. And I never really entirely recovered. So I have much huge, huge difficulties with independent moving around travel and things like that, because of because of extreme anxiety and panic attacks. And so I gave it all up. My daughter now kind of looks after things, and I have a wonderful or she does and, and to do with me, so it's all down to her. So on our on the on the website, which she now looks after, we have a number of autistic female coaches and a non autistic counselor who has an autistic son, and they and they offer kind of hourly support employment support, individual support over over Skype. And we the organization, I used to do it, but I don't anymore, obviously doesn't. We've got conference speakers and trainers and, and all of that kind of stuff. And a lot more is going you know, by by webinar. So it's not even just UK based anymore. People are doing stuff kind of internationally. So So yeah. So no, I'm I've kind of disappeared, I just I just do a very small number of these, these assessments from home. And that that's it, I've kind of disappeared myself.

52:03  
Well, I'm grateful that you were able to spend time with me here because I think this is it's a real treat. So I appreciate that.

52:11  
I didn't, it was fine. I didn't have to cook dinner because it's a an evening here

52:21  
that I'll be completely exhausted and that he needs to sort out dinner so it's win win for me.

52:28  
Well, that's the beauty of where we're at right now. I mean, this technology has been available, but now I've been able to work with people all over the world. And so my audience is international and I don't think I don't think it would have been as easy had we not been in this situation. So I i and I've also been able to have access to people that are home because they're not traveling all over the world. So I'm able to connect more so I appreciate you spending time and definitely for those listening there is a ton of information on your site and books and they can find all of the articles and I mean honestly you just type your name in and a lot of really good stuff so thank you so much for being with me today.

53:19  
Thank you for having me. I hope I haven't waffle too much off topic and and been vaguely coherent. So thanks. Oh

53:25  
knows. I think this is great. Thank you so much. And, and again, maybe Who knows, maybe in the future we can chat or meet at some someplace. I don't know. When we can. There's no way I'm getting on an airplane. Right? No, no, no right now I know. All right. Well, take care. Thank you. Bye bye. Bye. Thanks for listening to autism in real life. This is Ilia Walsh. And if you like the show, please hit subscribe so you can get notified each time a new episode is released. Also, if you join our email list at the spectrum strategy comm you can get a code to attend one of my online courses for free. See you next time.

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