Neuro Rainbow Cast with Autisticly Aar: The Jessica Espin Interview
Neuro Rainbow Cast with Autisticly Aar: The Jessica Espin Interview
TW/CW: This interview references self injurious and violent autistic meltdowns.
About Jess
Jess at time of recording this interview she was 29 and is still living in London. Not a native to the city having grown up in Bristol. She works in marketing but is known to many for her social media content which we discussed in this interview, discussing mostly of the content she has produced around her disabilities and being neurodivergent. Her neurodivergent conditions in order of being diagnosed are dyslexia, dyspraxia, ADHD and autism. With being autistic she has two chronic health conditions endometriosis and interstitial cystitis which can easily be explained as painful bladder syndrome.
Getting diagnosed with neurodivergent conditions
Q. Aaron: How did you get diagnosed and how does your conditions affect you?
Jess: I was getting my diagnoses. With my dyslexia and dyspraxia I was diagnosed when I was in sixth form around the age of 17. My ADHD was diagnosed in my early twenties in my second year of university. I went to university later than most people do at the time when people leave college or university at the age of 18. I was only given an autism diagnoses a year ago before in 2022.
When I was diagnosed with ADHD, the woman who was diagnosing me said to me that her professional opinion is that I am autistic. S he advised me to pursue going foreward with a diagnosis for autism. As it was solely to diagnose my ADHD. At that point I was very uneducated of what autism was, I didn’t fully understand what it meant. I had to deal with and confront my own internalised ableism. Back then I denied that I was autistic I couldn’t believe it or more likely, I didn't want to believe it. For a long time I lived in denial. But that wasn’t the the first time someone had told me that they thought I was autistic. I’ve had people say it to me throughout my life. I’ve had throughout my life to deal with ableism and internalised ableism that I had to overcome and educate myself to get to the point of having a diagnoses and recognise that I am autistic. I had to work long and hard to accept myself and embrace who I am.
Aaron: like it can take a while to get to the autism diagnosis, especially in people who were women and girls under, I say some female at birth. It only has been within the past year that you recognised that you are autistic.
Q. How was it like and how did it feel when the person diagnosed you with ADHD stated that in her professional opinion, you are autistic?
Jess: At the time I perceived their comments saying I am autistic were hilarious. There's absolutely no way that I'm autistic. There were so many occasions where people had told me or asked me if I was autistic. I always thought it was funny. I just thought it was this joke. Again, there's a part of me that's really ashamed to say these things, ashamed of my internalised ableism but I think it's really important to be open and honest about it his because I'm sure there are other people that are in the same position as I was. Removing that embarrassment and talking about those feelings are really important because we must recognise to becoming confident and accept your neurodivergent diagnoses is a journey, a process not an event or something that happens over night. It’s a journey that you go on and there's so many misconceptions and stereotypes. Some people fit those stereotypes and that's fine. But those stereotypes I think really prevent a lot of people from getting a diagnoses, understanding who they are and with getting access to support.
Aaron: Those stereotypes are impactful. For many neurodivergent people, people of my generation, yours and the generations that came before us weren’t exposed to representation of neurodivergency in mainstream media. Representation in the media is growing but it stills feel new. More so the representation of women and girls and those who are non-binary and trans. You wouldn’t have grown up with knowing how autism presents in women and girls before you got diagnosed which explains the importance of the content you produce on Tik-Tok.
Q. Who were the many of people who said you were autistic before you decided to pursue getting an autism diagnosis? And, what was it that changed your mind to go and get a diagnosis?
Jess: My sisters instigated an intervention. One of my sisters works with young people, at that time she was working with school-aged children with educational needs and behavioural difficulties and with autistic children. My other sister is a science researcher, a doctor. I'd really struggled my entire life which my family witnessed.
When the pandemic came about my life changed for the better. I know it's awful to say, a strange thing to say,I feel really guilty in saying it. This is not me dismissing how horrendous the pandemic for most people was and is. All of the things that I'd been struggling with for all of my life were no longer as heightened. I wasn’t struggling as much with as I did before the pandemic. It’s to key acknowledge that prior to the pandemic I was suffering burnout on a regular basis. I would be so low, I'd have meltdowns, I got to the point where I was feeling, often feeling so depressed that I'd be thinking about, you know, not wanting to be here. Once the pandemic came and the lockdowns, I didn't have those feelings anymore. But I wasn't really able to put like the two and two together until after the first lockdown had ended. When it did people started to go back to normal I started to have those feelings again. The commute became busier. I was having to socialise again. Places became busy again. All of these things caused me to have sensory overloads. Prior to this time I didn’t know what burnouts or sensory overloads were. I hadn't before recognised the impact of socialising has had on me and caused sensory overloads. I thought these things everybody did, what everyone goes through. For example, in work I would rehearse conversations before I'd have a meeting and in my commute as I was on my way to work I would rehearse conversations. I would practice what I was going to say, the conversations I would have in the mirror. I would be looking at myself watching my facial expressions working on how I would address certain people and what my face would do.
Then, I'd get to work and I'd be communicating with people and I'd be over-thinking everything and being hyper-aware of my facial expressions, to my tone of voice, to my body language. I would stim. I didn't realise what stimming was, like many autistic ADHDers we’ve always stimmed long before we learnt what it means. I was conscious that I did it. I would try and hide it. So I was so much less productive because, In work because I would be constantly trying to think about a million things rather than just like taking in the, the meeting or the conversation and trying to retain that information.it was much harder.
As we moved online I didn't have to worry about those things anymore. I could see my facial expression on the camera, so I wasn't as conscious of it. I was able to practice in the space of my own home. Then, my partner and house mates would say “what are you doing?”, “why are you rehearsing?”, “why are you talking to yourself?”. I didn't think it was an odd or different thing to do. It made me reflect on that. As things went ‘back to normal’ it really hit me because I'd really struggled and then I hadn't struggled for so long during that pandemic period. It hit me like 10 times harder. Before I accepted it, I struggled and I thought life will be like this forever. Since I had experienced the other side of life during the pandemic where I wasn't struggling, I really didn't want to feel like that anymore.
I was having conversations with my sisters and they didn't say it to me initially, but they had conversations amongst themselves, and said that they thought that I was autistic. Followed by a conversation with my mum and my sisters. Funnily enough, my mum who's a nurse, she's worked within the same trust for most of her life, most of my life. I know her colleagues very well not just just as my mothers colleagues but as family friends. They said to my mum that they'd thought I was for a long time that I am autistic. These are people that are qualified in given diagnosis. One of the whom has an autistic child themselves. They spoke to my mum. My mum had spoke to other people and there were all of these different people that were saying it. My partner had said it to me for a long time that he'd thought I was autistic. Again, to my internalised ableism, my lack of education and my shame to accept my autism to deny I am autistic, I would always have had taken it as it being an insult stating “I'm not autistic”. When you are hearing it from people, from so many different aspects of your life and that know you in so many different, kind of capacities. I began to question myself and be willing to acknowledge what they are saying as so many people are saying it because it's not just coming from someone that I live with, it’s coming from so many different people.
Aaron: You were the last person to realise that you were autistic. With the ableist view with what you perceived as autism of how autism has been historically depicted in mainstream media as stated previously the lack of representation of women and minority genders can have an impact on people not getting diagnosed and living a life trying live in a neurotypical world unbeknown to them of their different neurotype. Which for most of your like has been living a life in a neurotypical aware unaware of you are autistic and that you were able to accept you were autistic. Maybe the denial of your autism continually before and being unable for a long time before you finally pursued a diagnoses was your protective guard your attempt at survival in what you thought everyone did to get on in the neurotypical world, your mask, that you couldn’t have dare to risk slipping away.
It was only when the pandemic in 2020 came to Britain and the we were in a state of national lockdown that you realised that there was an alternative to sensory overload and burnout from being shutout of the outside world’s over stimulating environment the bright lights, the crowds, the socialisation as you say, what you have been doing in face of struggling with these sensory and environmental challenges with masking your struggles, you learnt masking wasn’t ‘normal’ nor is the effort that goes into it. Lockdown gave people a space of self reflection and for neurodivergent people diagnosed or undiagnosed the safe space to take of the mask off. By taking of the mask off you can see what the mask looks like the looking into the mirror at your facial expressions revising and overthinking every conversations. It becomes inescapable.
Q. Did you see yourself as being allistic (non- autistic) as to the truth of you being autistic?
Jess: There is a lot of misinformation online. A lot of the things that I thought was are autism, I'd thought was ADHD. It can be so hard to see different between the two and make sense of these different neurodivergent conditions with the amount of information out there. When I was assisting speaking to like my sister for example my sister who is a medical researcher working in development of medicines. Right now she is working on a trial of cannabis CBD medicine that is being trailed as a treatment for ADHD. I had spoken to her about that and at that time I thought all of the things that I experienced were a repercussion of my ADHD. So that's apart of the reason why I dismissed it for so long.
Aaron: It can get complicated with several co-occurring neurodivergent conditions that you were diagnosed with prior to being diagnosed as being autistic. First diagnosed with learning difficulties dyslexia and dyspraxia with traits that can be easily recognised within going to when you are within the educational system. Then ADHD which is commonly co-diagnosed with autism and some of the traits do overlap. With such conditions that can impact sensory and communication differences with concentration and coordination what often are labelled as as deficits ; the disabling aspects of these conditions when some of these issues and traits are linked to autism and not the three conditions you had been diagnosed with thus making it to harder to navigate through the mind fields of what belongs to which condition.
Jess: Yes. The diagnostic process I had was difficult and not a positive one, am sure many can relate with, unfortunately. I had my assessments, I got my diagnosis, and was set off on your way. So nobody ever sat down, explained things with me, helped me understand things, answer any questions I might’ve had. Even though they had conversations with me, so I could be diagnosed, asked me questions about my life and how I deal with certain situations, scenarios and tasks. No one had ever explained anything else after the diagnoses and answered “Why you've got the diagnosis?”I never knew for a long time really why I had that diagnoses. I know I had the report officiating my diagnosis stating “Jessie does…”, and “Jessie is…”. It’s much more complex to that and so much else to it. It's really difficult to know what is what. Then after being diagnosed I felt so much shame is attached because no one says with ADHD actually is and what it looks like. You are left to find that out for yourself. No one tells you about the brain fog and ADHD paralysis. You have to do so much research on your own and that can be a heard challenge. It’s isolating. Every person witch ADHD or Autism etc. is different to another, it is so different for everybody.
Aaron: Yes, I can relate. I was diagnosed earlier than yourself with dyspraxia around the age of seven, then autism age of ten approximately. there was only at like 18 and started to, uh, understand other meant because like, first of all, like autism was labeled as Asperger's with myself. A term used to diagnosed those now wrongly considered as being high functioning autistic who are more capable to be allistic passing from 1992 and by American diagnostic criteria the DSM in the fifth edition published in 2013. Officially internationally retired as a diagnostic term in ICD11 in 2019 published by the United Nations’ World Health Organisation whereby those diagnosed and recognised as having Asperger’s are recognised as being autistic. It was around that year of 2019 that I decided to ditch the label of Asperger’s knowing the changes of diagnosis terminology but also learning about the impact of function and labels and of course there were origins of the term Asperger's Syndrome and it’s history linking to Nazism.
Throughout the years after my diagnosis, through comprehensive or high school to sixth form I was masking my autism and dyspraxic. I never talked about my neurodivergent conditions and in comparison to my dyspraxia my autism was the hardest thing for me to learn about and understand what it is and how it affects me. It wasn’t easy not having an accessible and inclusive environment for me to comfortably learn and explore my autism in a space where I didn’t feel other or negatively different. Another thing about having to research autism yourself the information sources that a you could request at the point of diagnosis are sparse and there isn’t enough what we want to know about our autism, information is often through neurotypical person's lens of an autistic person. You left feeling or still feeling that you are weird or you're anxious as meltdowns do look like panic attacks and sensory overloads can look like symptoms and traits associated with anxiety and panic disorders. This can make it harder to self advocate in asking for help or knowing what help you need.
Schooling, University & Change
Jess: That's interesting that you had a similar experience even though you were diagnosed much earlier than I was. I do think that there’s something with the experience of being in school. I don’t know your own experience but I did experience bullying. But, when I was at school, I felt that I had a safety net in that environment with the planned structure and routine which did help me. Even though that my ADHD hates routines, setting routines, creating a routine and sticking to that routine. But having that routine of going to school where it was all set out for you made things much easier for me.
When you are in school specifically the ages of nursery to comprehensive or high school between the ages of 3-16 to 18 depending on the educational system. There is more freedom to be yourself and express yourself, I do know that it is more complex beyond this statement but you had more ability to explore your own interests and hobbies and not be subjected to adult responsibility. Although you are restricted to behaving in a certain way and that can have negative implications for neurodivergent people. I had a controlled environment where changes made were small and manageable nothing that would lead to prolonged periods of burnout. It was something where you could be more aided, assisted and supported not so lonely and isolated in embarking into an adult world and that level of independence which can be scary.
I remember one of my teachers saying to me when I was going through the diagnostic process for dyslexia. This teacher asked “Is there really any point you're leaving school, you're not thinking of going to university.” At the time I wasn’t sure if I was going to go to university. It was the time where I struggled to see my own future and what could come next. I thought should go through with getting a diagnosis, having associated a diagnosis, the importance of it being directly linked to education. Even if you don't go to university or you don't go to school it's still important because you don't get to eight and then it stops affecting you It affects you specific learning difficulties like dyslexia and dyspraxia aren’t just for school you will be living with such learning difficulties throughout your adult life. You think of it as being education related with dyslexia and falls difficulty with reading and then dyspraxia, difficulty with practical tasks.
Aar: I relate to that comfort of school for any of us who feel that metathesiophobia. As with a safe and secure monotonous structure I know that may seem daunting to some but repetition and familiarity can be reassuring for autistic people. I could play out a fantasy of what my future could look like but I could never know what my future look like and had no certainty to what change I could handle and would be alright with me. I would avoid making any decisions and having serious conversations about life beyond sixth form at the end of my time in school. The changes between comprehensive to sixth form were times where I did feel anxious about I went to the option that offered the familiarity of school over college and the same level of support that couldn’t be said about university. With university I only lasted out five weeks. I didn’t even get to hand my first assignment or essay in, which I had no clue what I was to do with it. The support in studying what technology, computers and software, peer support and one to one meetings with those in the university who are able to support students with autism and learning difficulties. It took ages to sort the documents. it's a colossal transition that I simply did not feel prepared for.
Jess: This is the reason that I'm so passionate about talking about it online it is so difficult from changing job or moving home or getting into a relationship. Those adulting things are really difficult to deal with as an autistic person but as well as a person with ADHD and dyspraxia.
When I was growing up I had this weird thing that I never saw my life past 18 and that wasn't like in a sad depressive way but I just couldn’t imagine and in vision it. I just could only see my life up to eighteen. Then, when my eighteenth birthday came and I became an adult I looked to the next landmark birthday my 21st birthday where I couldn’t see my life beyond 21. I just had these landmarks. After these landmarks birthdays came and went I could accept that I would just keep on living
How I can explain being unable to see by life beyond these milestone ages is being unable to mentally imagine things (aphantasia) which means I can't imagine anything in my head ; when I shut my eyes, I can't picture things at all. I can’t visibly see anything in my minds eye I am unable to do so which is a difficult thing that makes it harder to vision a future when others could try to paint a picture of what that could be.
Another reason being is it is linked is when you are in primary school, that next step is secondary school. Then, you're in secondary school after that the options is to choose from sixth form or college as young people of the ages sixteen to eighteen when you aren’t legally an adult but are afforded some adult responsibilities your choices do open up you can look to employment and apprenticeship schemes but you are incentivised and expected to still be still in some form of education where you could earn another qualification be it a BTEC or A-Level even though your options open up it is still a small choices with manageable change. So I think that that was really linked to it of having that routine and that system. There was something inside of me that knew outside of that I was going to really struggle to function with this new change and maybe I couldn't pinpoint what it was but inside my gut I knew
Aaron: When you are under the age of eighteen decisions of what you should be doing in life in the present are made for you and the decision making is removed and is restricted to a few options which can be easier for neurodivergent people as we don’t have to process the decision making aspect of working out what changes we want when change is inevitably around the corner, we can just simply be in the here and now which I find far more ideal. As a neurodivergent person I get so easily overwhelmed by the smallest of choices in my day to day life of what you want to eat, what clothes or what to do with our spare time. Struggling with the smallest decisions I don’t know how people expect us to be able to make bigger decisions that has life changing consequences. Being unable to make a decision is something that mentally I can’t sense what my mind wants and what in the moment or in the long term I would want it’s a lot to sense and its a sensory issue. It’s why we have safe and same options of things to eat, wear, watch, go and do as it removes the complexity of thinking and overthinking it. Making things simpler removing and narrowing some of the choices down. When get to being eighteen life choices can feel endless, with an infinite amount of choices and decisions to be made what job to go for? should I go to university? What university shall I go to? This transition from being a teenager and entering your twenties is one of the decades with big life changes in becoming an adult and finding yourself it’s dizzying.
Jess: I’m adverse to change. I hate change. I cannot deal with change. It gives me anxiety. Particularly if it's like more than one change at once. If I'm going through like multiple changes, like recently I got a new job and I moved house and it was a lot in one go.
there's like the change element and then there's the choice. And when you pair the two together, it's so overwhelming because you've got all these decisions that you have to make and you don't know which is the right one to do and you spend so much time overthinking it. beating yourself up and having these intrusive thoughts about what if you make the wrong decision. And then there's the actual change element too, which is again, when you're coming out of a routine that you're comfortable with and that you know it really scary and difficult and often just avoid it.
It's isolating because even within that, then you've got the other layers that you have to add in. It's a new space that you're not used to. You have to make friends and like be around people that you don't know. that's something that I find so hard. it's all of those things.
Aaron: I struggle with myself as I found with university, its the environmental change, the academic change in learning style and volume of work and the social change. You are dealing with multiple factors I felt like a small fish in a big pond which is rather unusual for me as by the time I left primary school I was nearing six foot. It felt like too much to navigate and triggered an autistic burnout that I never felt before.
Jess: Exactly what it is. It feels like drowning
Q. Aaron: when you was of school age, was it that comfort of like familiarity and reduced changed a far more controlled environment that made it much more possible to go under the radar living without a diagnosis of autism and ADHD?
Jess: Even though I didn't get diagnosed in primary school, they did see that there was a learning differences. I never asked the question of why but in what was called ‘golden time’ which was in primary school at the end of the week on the last hour in the afternoon of school on a Friday rather than doing typical lessons it was within classroom time to play as a reward of being on good behaviour. There was one catch if you were naughty, you’d lose minutes off golden time and then like then you'd have to sit in a corner as punishment.
During golden time, I wasn't allowed to participate as I was pulled into special lessons one to one with a teaching assistant that would go over my work with me. I had this teacher on lunchtime too, three times a week where I was pulled out and I had special additional lessons lessons. At the time nobody said to me, “we think it's because you are slow or you struggle with this”. I can't recall anyone explaining to me why but the fact that I had to have it suggests that they acknowledge that there was something different. but I don't know why they never pursued anything further. My theory is that in primary school I wasn't like naughty. It didn't come out in my behaviour. I was in my own world and kept myself to myself. Even though it was obvious that I was struggling but it wasn't a problem for anyone. Whereas when I got to secondary school, it came out in a different way.
I would struggle and then the teachers would deal with me and say “Stop trying to be funny.” or, “stop acting stupid.” or, “stop trying to make the class laugh” and, “don't ask stupid questions.” I wasn't doing at all because I wasn't doing it I would ask a question that they would think I was taking the piss when it was a serious question. I couldn't understand like what it was that they were like getting angry about. I'd end up getting myself into a lot of trouble because of these kind of things. Then it was like a self-fulfilling prophecy where I'd get fed up because I didn't understand or and got fed of being told off for doing things that I didn't realise were a problem.
I didn't get diagnosed with my learning difficulties until the end of secondary school, they did realise throughout secondary school that I have a learning difference or behavioural condition that they could not work out what it was. I remember this one woman who worked in my secondary school. I was in year seven at the time, which is between the ages of eleven to twelve, the first year of high school in Britain. This woman, knowing there was something different about me she suspected I had OCD. I remember her saying to my mum “she's obviously has OCD.” My mum being a mental health nurse responded that I “absolutely do not have OCD.” I remember so vividly this woman saying to me afterwards when my mum wasn't there “I think that your mum's ashamed to admit that you are OCD because she works with people that are OCD.” I knew in my heart that my mum would've accepted me for whatever mental illness, disability or neurodivergency I could have, I trusted that my mum's opinion was right. It wasn't like my mum was trying to stop me from receiving a diagnosis. She was saying it was wrong. This left like a bad taste in my mouth and made me distrust her.Id stopped going to the of things that she was sending me to.
Then my mum and dad they tried to get me extra support. So they got me to go to the Mind charity, and tried to help get me help through there. Sleep is something that I'd really struggled with and they thought maybe some of my struggles were coming through sleep deprivation because I've never slept properly since I was a baby. It's always been a big problem. they thought it was related to sleep because they thought it was sleep related they took me to a sleep therapist and they took me they were actively trying to get me support. It wasn't that they didn't want to admit it, it was just that they just didn't know.
Q. Aaron: Growing up your schools had absolutely no clue about what neurodivergency is but they had an inkling that you had a learning developmental condition or a behavioural disorder but they never told you. Teachers tend to talk indirectly to a child about issues concerning you the then child. Had that had an impact of your experience of school? and how you see your time at school?
Jess: huge impact. I had some teachers that were awful. But then I had some teachers on the other hand that were amazing. I had one teacher that I used to get in trouble for stimming in class. I always would retain focus by fiddling, by tapping or by playing with my hands or my hair or picking my skin. I would constantly be told off for doing it but these stims were helping me to focus. But then the other thing I always was told off for was my facial expressions.my facial expression don't reflect my feelings and emotions ; it’s really difficult as unless I’m looking in a mirror I cannot tell what my face is saying to another person. These comments from my teachers could have had an influence on how I come to rehearsing my facial expressions in the mirror. This went as extent that my teachers would call my mum and to say that I was pulling faces at them and that I was being aggressive and I had no idea what they were talking about. I'll get home and my mum would say “I've had another phone call from your teacher again.” ‘what am I don't know what I'm doing wrong?’ I wondered. it made me feel really resentful to particular teachers that had then had an impact on that lesson, I wanted to skip and avoid certain classes as I didn’t want to be around certain teachers.
On the other hand, I had some amazing teachers who really acknowledged that I had been struggling and would pull me aside. They would adapt how they taught the lesson to help me to understand it. I had an English teacher and I couldn't get Shakespeare for the life of me. I find reading really hard so she would send me other forms of poetry, like rap music to try and teach me and she would tell the story in different ways and was just really creative with her teaching methods. or do one-on-one lessons with me at lunchtime to help me not in like a patronising way but in a really nice way and I'm so grateful for those teachers because if it wasn't for them, I wouldn't have come out with the grades that I did.
It was when I was doing my A Levels my drama teacher, she suspected I had a learning difficulties and she was the one that got me my assessment for dyslexia, dyspraxia. It was not until the pandemic where I actually reached out to her to say, “Thank you.” I emailed her. “You don't know the impact that that had on my life. Like, thank you so much. cause if I'd never had that diagnosis, I'd never have had my ADHD one, probably would never have then got my autism one either. I would never have started that process. “
I asked “what was it that made you?”, she said “there were a number of things,”. One thing really stood out to me and she said it's always stayed in her mind was that I would talk about how long it would take me to have a shower and the process that I would go through to have a shower, like I'd do everything in a specific order and how long it would take me to cream my body after having a shower. she said it was so specific the way that I would describe it in the order in which I would do things in. I can't remember what the rest of it was, but it was all around like something completely unrelated to school. But she'd heard me talking about that had been like she'd that for some reason stuck out in her mind. I'm glad that it did because, and I'm glad that she then reached out to get me that help, because if she hadn't, I think I would've made it to university.
Aaron: Your drama teacher was a good listener and reader of your behaviour and was interested in knowing who you are and not just teaching you and there’s a difference. Listening to students whether that is connected with the work of lessons but engaging with other conversations they may have can understand their students and help your students to understand themselves. As for when she was listening to you she was able to put things together and recognise signs and traits of neurodivergent conditions and help put things into action to aid you in getting a diagnosis when other teachers have failed to do so.
Jess: She was able to put signs and traits together and was very observant.
Aaron: Your drama teacher was able to create the space and time to research your neurodivergent traits and discovered information on dyspraxia and dyslexia.
Q. What was it like when your drama teacher could identify your learning difficulties? And, how did it feel to have had privilege of thanking her for recognising your dyslexia and dyspraxia?
Jess: She was the one that contacted and organised for my diagnostic assessment for dyslexia and dyspraxia. I remember was knowing that she'd spoken to somebody about my traits and what she’d had researched. I had my assessment ; there was lots of tasks. At the end I was given a report with my diagnosis of dyslexia and dyspraxia which allowed me to do my essays and exams with extra time. I was able to access additional support which she advocated for. I was also able to access to coloured overlays as I have Irlen’s Syndrome. I'd already done my AS level (first year college and sixth form examinations) exam in sociology in which I got an E. I was able to resit that exam with the extra support and the extra time with access to doing the exam on a laptop, being in a room on my own and in that re-sit I got an A and I didn't work any harder. It was not having those distractions, those noises. it was the clock ticking or someone tapping, or people walking up and down. Being in a space where I didn't have any visual distractions where I was able to type rather than write. I could not believe it when I got my grades through that I saw a significant jump. Having that diagnosis did help me.
But still at this point I still didn't get any support outside of lessons. I didn’t have somebody come in to help me or anything which I would've really benefited from. I think something that would've benefited from is maybe just having somebody to talk things through.
One of my really big struggles with being ADHD is the emotional dysregulation that comes with it. I was getting myself into trouble a lot throughout secondary school and sixth form. I'd have meltdowns and I'd bang my head against the wall and I would pull my hair out. These meltdowns weren’t just dangerous to myself but to other people. My meltdowns, I thought were tantrums if I had somebody support me in learning how to regulate my emotions and looking at different techniques that I could do, I think that would've been really life changing because they're things that I continued throughout adulthood. These meltdowns I would have regularly where I’d : smash, chuck things, throw chairs, pull my hair, smash my face against the wall, I would hit myself. It was awful. The only way that I can describe it is in that moment I feel that I am being possessed by something. It's not like I can just stop. It just builds up and builds up and builds up. Sometimes it will come on as like a repercussion of too much stimulation ; a sensory overload where I couldn't manage my emotions. Support would've just been so important to me and really helpful.
I think may have also helped the amount of times I'd thought about not wanting to be here and all the times I've written like notes to my family because I was like, oh, I'm not gonna be here. I'm gonna end it, or all of those kind of things. I don't know, but I, wonder if, if I'd had that support, would I have opened up in those places.
Aaron: Without having a diagnosis of ADHD your childhood meltdowns couldn’t been explained at that time. My meltdowns were more like panic attacks hence how for sometime it was hard for myself to recognise what my autism looks like.
e. like what, being about the harm could cause self, there must been like tough go to go through without having like anybody in your life that could like guide you. Even though with empathetic and supportive parents, which trying for you, but like somebody who was like another neurodivergent person, not like, could help be in that way.
Jess: Yes, that was really hard. I have still got on my arms and it's not self-harming. Like, I don't know if you can say I would I can't twist my arm around, but like, I would smash photo frames and be injured by the glass I’d get the glass ; it would be whatever I could do. it wasn't in that moment like I'm trying to kill myself but it was like I said like I was possessed, that's the only way I can describe it. I would lose control of myself and become so violent in my meltdowns. Then afterwards I would feel so much shame attached to my violent meltdowns.
I remember having those meltdowns when I was younger and my dad and mum used to say things like, “you're gonna wait the neighbours.”,”it's not fair.”,” You are being selfish.” “You are distracting people.”, “Like you need to pack it in.” And now obviously they feel awful, like, but because they didn't understand, they're like, you are too old to be having tantrums and behaving like this. not recognising or realising what it was. They feel guilty for saying these things now.
Aaron: Now you've been able to get that diagnosis of autism and ADHD about then like the impact of now having a diagnosis can be quite harmful handle and it to themselves as, like it can take so many people's lives away from, like I say that like the mental health side of things as saying not you, like you didn't want to, end it.
But it was just like stressing and thoughts rushing around your head in meltdown and something, I guess because you didn't know how to control the feelings you were feeling as you felt quite possessed for it. sometimes stim and then sometimes in the meltdowns like what stimming is like, it can be bit more harmful.
Jess: Yes and I am aware that there are both healthy and unhealthy stims and the harmful are unhealthy.
Aaron: important thing is being able to understand what are unhealthy or and stims and coping mechanisms to deal with sensory overloads and things that could trigger meltdowns. you wanted to be able to have that support of like an extra member of staff, they could help you with emotional regulation and, and from, I've been talking to like the guests on the podcast on reflecting on this. So like there is really need for importance of having like neuro divergent people to be able to like inform like, oh, like things get set out in schools and in the education system system and like, as I think to myself now, it would be so beneficial to have like a.
A neurodivergent person came into school to like actual teach what is ADHD and autism and these things and explain it to normalise these things. So like people can understand then and maybe get a earlier diagnosis and for then teachers to start empathising with it
Jess: Completely agree. It's a real challenge though because the education system now is so flawed. Teachers are teaching classes of thirty to thirty-five students approximately which makes it virtually impossible for them to recognise and have those one-on-one relationships with children in their classes. I feel for teachers, because they need to have that education, but even with that education it is still going to be difficult for them to identify these things because of this the whole system needs to be reformed.
Aaron: You said it affects everyone and that things, things can extend to like the, NHS and you have, uh, support teams and like your mental health support teams as they kinda all linked the, the school system. we like as just like all the trait of autism and ADHD both combined and neurodivergency is like (hightened) hyper-empathy and social injustice. And from the content I see you creating and the stuff you manage, make speeches on, you manage them incorporate your life experiences, like you, the, like some of the negative experiences you into like making people very often trying to make things like easier for change, like to try to change things the better.
Jess: Its definitely something that I'm really passionate about. It is very much interlinked with being autistic and having ADHD that strong sense and feeling of social justice and is why I feel it so deeply about issues that are I hold so close to my heart. I look back at, past elections and being on the phone to my dad and saying “I can't live in this world anymore. Why are people so cruel?” ,“ I can't believe that we're going to have this government. so many people are going be going to food banks. What's going to happen to the NHS?”. I was distraught ; it's natural to feel like that. it was like grief and this is the only way I can explain it.
When I look back at my life and I can really see like how that even before I had the education or awareness to accompany the social activism I’ve became involved with. It’s always been like a part of me. It’s innately who I am. There's this story that my nan always tells about when me and my friend were around her house and we were having something to eat, she walked in to hear me talking to her about fascism. I was talking to her about how she mustn't leave her food on the table leave any food on her plate because there are children that don't have any food in the world which I completely disagree with now, you shouldn't force people to eat if they're not. But knowing there are people going without anything to eat we should be grateful with what we got.
Then in primary school, I used to go around without a coat on at lunchtime when it was raining my teacher would say, “you need to put your coat on.” And I'd say defiantly, “No! We need to know what it feels like to be homeless. Homeless people have to live like this all the time. We should have to experience it too. “
Another story, one Easter I refused to eat any of my Easter eggs until I'd stood with my arms out, like in a cross for a really long time because I felt you had to understand what it felt like, what Jesus sacrificed on the cross for us to have these Easter eggs. That’s a very unique way of trying to understand and empathy with people was definitely something.
In secondary school I would organise protests where I'd get the whole school out to sit on the balconies and refuse to go to lessons because it might have been over things like school uniform or racial justice. The school uniform one really sticks out as I remember getting like a new head teacher come in and she tried to change our uniform and I hated the new uniform because it was like this horrible material and it used to really itch my legs and like when it got wet it was a sensory nightmare. Whereas, before that I'd been wearing a tracksuit to school and I was so comfortable. I worked really well wearing my tracksuit bottoms and I was so comfortable and then all of a sudden being told “No! you must wear this.” and, “Your skirt must be this long.”I stated unafraid of the consequences “It’s sexist! You can't tell us what to wear.” People should be able to learn how they're most comfortable. Now I realise that is linked to being autistic.
Aaron: It is like linked to being both autistic and ADHD. With autism a common trait can be hyper-empathy being overly empathetic this can be down to our differences in emotional processing which can impact our sense of social injustice and with ADHD it can lead to imaginative defiance something courageous to show acts of initiative which can lead to acts and demonstrations of social justice. (Since the Isreal offensive retaliations occurred in response to the attacks on Israeli land by Hamas. With Israeli’s response to those attacks leaving to the deaths of innocent Palestinian civilians. Jessica has been involved in the marches and the demonstrations that have been taken place in London advocating for the rights of innocent Palestinians calling for a ceasefire and an end of violence).
With symbolic gestures at Easter time you were explore your literal thinking of how we should try to empathise and put ourselves literally in other peoples shoes. But when it came to the protests you staged in school it was related to your sensory needs and discomfort. It is an alternative means of self-advocacy and trying to communicate what you need and want and that is to feel comfortable when your senses are heightened and are more sensitive to certain fabrics than most other people.
Being neurodivergent there can be two experiences of school the two are, the first I associate with being more masked more anxious being obedient by submission often seen as quiet and shy. The second more loud and boisterous often getting into trouble and being told we are doing something wrong ; the rule-breakers of what fits the common stereotype of ADHD the more hyperactive image that is often portrayed. But of course it’s more complicated and jaded than that. It can take the rule-breakers, the ones with good intentions to make the change, as your intentions with the protests around school uniform being ‘sexist’.
Q. Is this what has inspired you with the political activism you do today and do via the media on social media platform you created with your TikTok account?
Jess: It definitely is.I don't think you necessarily realise how linked it is until you take that moment to like reflect on it and look back. For me it's like a mixture of things going online with my social media. initially it was building that community and finding comfort in not feeling alone or isolated with people relating to things I would talk about that I’ve been through. At times I’ve felt that I’m the only one but through social media I’ve learnt that there are many people that been through similar things and it's not abnormal to feel the way I do and there's nothing wrong with you and you're not a bad person. Everyone has been online so lovely and so nice. It's a completely different experience to so many people talk about online trolls but on the most part everyone is so supportive.
As my platform has grown, I’ve wanted to educate people. You want to make other people feel how other people have made me feel and having these conversations about things that are difficult to talk about. Often shame is so attached to it. But a when you have those conversations, if it's only one other person that can relate and it helps them to feel more normal or feel less alone, it's worthwhile doing.
Aaron: social media can be nuanced thing. For myself social medias like internet that has been the only way I started to understand my neurodivergencies from the lens of (other) neurodivergent people it gave me the ability to begin to unmask. Through social media with seeing other like minded neurodivergent people I learnt how masked I was. It’s a good means of education.
Jess: It's interesting you say that cause I feel like there is such a lack of representation, of us in like the media and stories and what it is. It's so stereotypical and actually like the majority of us aren't necessarily like that really online it's like we are taking back that ownership of actually this is like what we are like and then being able to kind of relate and like laugh, relate to those jokes and see ourselves and it, I think you're right.
Aaron: In traditional media you will only see at most bite-sized crumb of representation of neurodivergencies but now with social media we can openly tell our stories. When talking about the diagnostic criteria it can be from a neurotypical persons perceptions as most of the information about autism in traditional outlets. On your social media you have shared your lived experience of the reality of what it means to be neurodivergent and like in this video are being very vulnerable in how you are telling your own story on social media. To look at the topics you cover are chronic pain health conditions, racial injustice, social issues to feel passionate about and neurodivergent-disabilities.
Q. To ask you to go in further detail: what are the things you have used your social media platform for and specifically use to talk and raise awareness about?
Jess: It's so broad. Everything from talking about being neurodivergent my experiences like throughout my life, my day-to-day experiences, techniques and things that I've found or strategies that I've found helpful talking about mental health, talking about like if you say my other chronic illness and disability
Chronic Illnesses: Interstitial Cystitis and Endometriosis
Interstitial cystitis, which is to do with the lining of my bladder. It's like my bladder has like lots of incisions in it kind of thing, and when I wee it bleeds and you don't see the blood coming out, it's all internal, but it's of course like very painful. It took me a long time to get ,diagnosed, and I was having lots of misdiagnosis. Now I'm on a treatment plan that has worked really well and I'm really lucky, but it took me, got about seven years to get to that place.
I do still have flareups, which are like usually related to stress. Ironically, I came out of lockdown and I was getting way more flareups again, which, I think it's very much linked to navigating a neurotypical society. That kind of stress I think is really linked to it because when I'm at the worst in my physical health is usually when I'm most stressed.
I talk about that a lot. Endometriosis, which I was diagnosed with when I was, I believe 18 or 19 which is like when the lining of your womb grows outside of it and it can cause really like pain, like lots of pain, um, feeling like tired, um, heavy periods, et cetera. So I talk about that, but less so because I'm quite lucky that I'm one of the few, very few that I've heard of that have got it, but not to like a severe degree.
So it used to be much worse and. It's not as bad as it was when I was growing up. So when I say growing up, when I was looking 19 years. So I talk about that, but then I also talk about lots of things around like social issues, anything from like the NHS to homelessness, to racial justice the education system, things that I would like to see change in.
Then just more broader things that are just things that I find funny, things that I relate to. So I don't, I don't really necessarily, I think fit into like one niche. I think that's something that I'm trying to make sure that I don't like box myself in too much because often people think oh, you are ADHD, you are autistic, You're dyslexic, and that's your whole personality or that's your whole identity. But we're not, we're like normal people that are layers and complex and have interests and passions and like, it's important that we're allowed to show that we are not one dimensional.
Aaron: I have only heard about this condition through yourself.
Q. What is interstitial cystitis? How does it affect you? And, What are the signs and symptoms people should be looking out for?
Jess: I needed to go to the toilet a lot. I was always needing to eat. I think I was going to the toilet a minimum of 10 times a day. I was up throughout the night three to four times. I wasn't sleeping. Making it's difficult to travel. You do often have accidents, which as an adult isn't like the norm with lots of leakage and suffering huge amounts of pain to the point I'd be lying on the floor in agony. I couldn't move. I was bloating to the point where I looked like I was pregnant and it would happen so suddenly. I would go to the doctors and they would do tests for urine and bladder infections like UTIs, kidney infections. They would come back as like negative. I had to explain to my doctors that “you can clearly see that something's wrong because it was all coming back as negative.”They didn't know what was going on.
It got so bad that I was in A&E like on a weekly basis because it was so bad and eventually my doctor agreed to send me to get a referral. I did a few tests and initially they couldn't find what was wrong and they sent me to a physio. When I went to see the physio it was hard. At the same time I was being tested for MS as it was suspected to be. I had to wait for a MRI and the results of that to come back. If the MRI tested negative for MS I'd have speak to the specialist. That was followed by a cystoscopy which is when they put you to sleep and put a camera in you. I remember like waking up from the operation and my doctor came over and she confirmed that I had a really poorly bladder. I was so happy that I finally had a diagnosis because I’d felt like nobody believed me even though like it was obviously not good to know that there isn't a cure and it is a chronic health condition that I am going to be living with for the rest of your life and going to need operations throughout my life. It was a relief to know.
When it was said that I could have MS I was devastated thinking my life could be cut short and I might like lose mobility and losing my independence. I was devastated. It did put things in perspective to me because I thought ‘Do you know what, things might be more difficult, but I can still do things and I want to make the most of my life because like when I thought it was MS and I was thinking, oh, it's gonna be over, it really does like, make you think about actually how much you do want to be there. Being able to kind of take control of my life again as so many of my weekends were gone because I was spent there or evenings and it was that bit of hope that I can start to get things like my life back.
Q. Aaron: I can imagine discussing the chronic health conditions you suffer with on TikTok has aided in creating awareness about interstitial cystitis and endometriosis. What has the impact been of using social media and has it helped other people with the same conditions?
Jess: That's the thing. I'd never heard of it before and that was the same for my GP. If I have to go into the doctors for something else and they say, have you got any other conditions? And whenever I say that, they're like are flummoxed “what's that?”. I remember after one of the treatments I had is botox. I had to go back into hospital and they asked “have you had an aesthetic done recently?” To which I responded, “Yes, I have. I had Botox for my bladder. They were dumbfounded and in a shocked tone responded by asking “for what? Botox on your bladder? What? That's a weird cosmetic treatment.” Having never heard of Botox in the bladder as part of medical treatment. I had to explain it's not cosmetic and disclose that I've got interstitial cystitis. They didn’t know what that was. It’s infuriating. I’m left thinking this is a doctor that's like 50, 60 years old and has no idea. So even within e the healthcare profession, there's still such a lack of education. it is still relatively new or in its infancy in terms of education. it's only through talking about it that more can get treatment and get diagnosed with it. it is one of those conditions that primarily affects women (assigned female at birth). unfortunately women's health care care is under researched and underfunded. it is down to those of us in that community talk about it. Nowadays you've not been able to get a quick referral because if you like go through slow referrals at your local general practice surgery and I wouldn't been able to like, have the understanding of other conditions.
Aaron: The lack of funding and understanding and awareness is a big issue. Even endometrial condition you have, it's like getting a bit talked about a bit bit more now, but as you like, it still said about like a eight year wait for the diagnoses of it it and as you were probably found out of yourself, there's a lot that, GPs and other medical professionals don't understand about it
Jess: With endometriosis I was so lucky. I went in at eighteen and the first person that I saw turned out to be like one of the leading specialists in the UK. In that instance I was in the right place at the right time. I've been very lucky to get diagnosed early. But still there is a process of waiting, a period of uncertainty, medical gaslighting and ableist ageism with people saying “you're too young, there's no way” leaving me to say “I'm not making it up like this. I'm not lying.”
It's not a thing that I feel comfortable talking about. It’s not what most people feel comfortable talking about and you do often feel a level of shame talking about it. Especially with things that are more intimate. Even though we're all grownups talking about our bladder and our bowel health isn’t the norm and something we avoid and don’t acknowledge more so talking about having accidents that most often we are made to feel embarrassed about. It's just not socially acceptable. we do need to talk about these things. We do need to have these conversations because there's nothing to be ashamed of. We shouldn't be holding this shame. The longer that we attach shame to it the more likely it is that people are going to continue to suffer in silence.
Aaron: It's like important to have like these conversations because like hoping by doing this we can start to bring awareness of because one thing from doing this from this podcast it's been good to like learn from other people about the areas knowledge and your life experience.this is taboo subject. But as you saying, it's something that I found affects where a lot of, autistic and neurodivergent people people, lot of chronic health conditions.
Jess: I have a theory that it's like the stress of masking that can have that effect on the body. As to the links between the numbers links between autistic people having co-occurring health conditions, I do know of many, it is something that i've looked online to see l if I can find research into it and there really isn't anything. it's definitely something that needs to be researched more.
Social Media
Q. Aaron: What have you found like the impacts of sharing your story on TikTok? and have you found people contacting you and sharing how much it's impacted them?
Jess: it's been heartwarming. You saying that's just reminded me. There's the one that messaged me and I completely forgot to reply. There are of people thanking me stating that I’ve helped them through my TikTok videos, helped them to understand themselves making them able to remove the shame and stigma. From the content I’ve put out it has helped people to pursue a diagnoses and to be able to be open to others about their neurodivergent conditions and disabilities and know how to talk about them. It's heartwarming and rewarding to have that impact. it’s humbling too. It feels like a big responsibility but is such a privilege to be able to do and make a life changing impact on other peoples lives ; life changing for me too. When anyone thanks me for what I do, It’s a thank you to them too. If they didn't watch my content and comment and say “I relate to this,” or “I understand this,” or “this is my experience,” I wouldn't feel as comfortable in my own skin. It’s a two-way thing. It's not just me trying to help others I get just as much from it as other people get from me.
Aaron: Exactly. That's why I found from starting doing this podcast you can grow in confidence in discussing your disabilities. If you are hearing from other people ; people who will like experience different things or you relate to sharing your shared experiences. Even though everyone's experiences different, you feel your experiences have normalised and no longer feel alone
Jess: absolutely. You feel less isolated and lonely and you feel less like an alien.
Aaron: It seems that from when you couldn’t see your life past the ages of eighteen and twenty-one unable to see your future, not because of a depressive mindset but because you struggled to know what your future could be. Before you began on TikTok you struggled to accept you could be autistic living in denial now you are open to talking about it and recognising your burnouts and sensory triggers to avoid self-injurious meltdowns.
Conclusion
Q. It seems that your life has now changed for the better? And you have turned your life around that you could embrace your autism and begin to find autistic Jess?
Jess: Yes. For the first time in my life, this certainly does sound soppy or cheesy, but I really do think it's changed like my life for the better and I feel like the healthiest, the happiest I've ever felt. I don't think if I'd like looked back ten years ago, I would've ever thought that I would be able to feel how I do now. I feel really grateful. There's a part of me that feels angry and resentful, but I didn't know earlier. In hindsight, maybe if I had. I wouldn't be doing this now. Everything does happen for a reason and it works out in a way like I am still here and hopefully I can help other people.
I know my experience isn't a unique experience at all. we all share so many of the same experiences. It always blows my mind whenever I see something and where I thought that was the only one. “How have we gone for exactly the same thing?” we're all deserving of it. that's what does drive me is wanting other people to understand that they're deserving of it too and, , to not feel angry at themselves or ashamed or guilt or any of those like really destructive emotions or feelings. So that they can be healthier and happier.
Q. Aaron: What one things that you'd wish to take away from this interview the one thing that people may not know, about being neurodivergent, disabled or chronically ill?
Jess: that I don't wanna be changed, we don't wanna be changed, we just want society to change. There's nothing wrong with us. Our brain just works differently. The problem is with society and how society is structured and actually there is just as many, pretty much of us as there is of them. And why should their brain and way of thinking be prioritised We all have something really unique to offer and our own like perspective that is just as valuable. That can be accommodated and we should be accommodated. And I think that like was, I've really struggled with is asking for accommodations and, you know, being able to ask for accommodations is so important. Um, so basically do it like, don't feel ashamed and don't feel like you don't deserve it or have imposter syndrome because you don't have a wheelchair or a walking stick. Your disability is still valid. Yeah. Um, and like, because of the fact that the, the world isn't built to accommodate us. So you have to take all of those accommodations that are there because if you don't, then no one will.
Q. Aaron: If you could change one thing in the world to help to improve things for disabled and neurodivergent people, what would that one thing be?
Jess: I think it would, a lot of it would be around like the diagnostic process. I think that it should be a lot easier. I don't think that there should be wait lists. I think everybody should have access to, a diagnosis and as quickly as possible. I think that everybody should be tested at least twice, once at primary school and once at secondary school to ensure that nobody slips through the net. I think that once you get a diagnosis that you should have clear plans written up that you should have like check-ins on a yearly basis to see what needs to be changed and how those kind of like plans and support can fit in with your life at that point. I think that we shouldn't have to ask for accommodations at work. I think that they should just be like a given. Like it shouldn't be like, can I have permission to not sit by a printer or wear headphones? It's just, I think that like why should we have to ask? I just think that's out like crazy. I don't think that we should have to, like when we start a job that they shouldn't be able to ask you prior to starting the job if you've got any disabilities, because obviously it can then be held against you and weaponised and you can be discriminated against. There needs to be more protection.
Q. Aaron: Is there any thing else you’d wish to say and you haven’t had the chance already?
Jess: The two thing I’d wish to say as advise. for me, exercise has been like huge medicine. Like it's, it really like never underestimate the benefits of it. cause I was so shit at sport because I have no coordination (dyspraxia), lack of balance. I stayed away from any form of kind of exercise outside of swimming because I wasn't good at it. it's not about being good at it. It doesn't matter whether you are good at it or not. Like the health benefits for your mind and for your dopamine production and for your sleep are huge. So that's definitely something that people can do to like, help themselves and to do things that you enjoy.
We live in a world where people want to monetise every hobby that they have. Do things because you like it because it brings you joy and , it gives you pleasure. because you have to create that dopamine for yourself, because if you don't, that's when you start chasing like unhealthy forms of dopamine, and develop things like addiction and whatnot that's like probably the two kind of pieces of like advice that I would give.
If you're not like great, all the best of it. Like if you're just starting what you're best physically capable of. Even like if it's starting off with a short walk like myself, like I find like I found a lot in myself like I never been great to like sports or swimming.
