No Such Thing As Mild Autism | Ellie Middleton’s ADHD Diagnosis Journey
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- Опубликовано: 13 фев 2024
- Ellie Middleton is proof that living with ADHD as a woman is a tough task. Let alone autism and ADHD in women combined. Adult female ADHD symptoms can vary from male symptoms - meaning women are often diagnosed with different conditions before receiving an adult ADHD diagnosis.
After dropping out of school, being misdiagnosed with Generalised Anxiety Disorder, and constantly feeling misunderstood, Ellie Middleton was finally diagnosed with Autism and ADHD.
Since then, Ellie Middleton, who you may know as Ellie Midds, has built a thriving online community of over 300,000 people, founded the groundbreaking Unmasked community for neurodivergent people, and worked with global brands like The Independent, Google, and LinkedIn to change the narrative on neurodiversity.
In this chat with Ben, Unmasked Ellie Middleton, talks about the lost generation of people who received their ADHD and Autism diagnosis in adulthood, why ADHD symptoms in women are slipping through the net and also delves into the benefits to those who self diagnose ADHD.
#autism #adhd #neurodivergent
On THE HIDDEN 20% - a Dyscalculia, Dyslexia, Dyspraxia, Tourette's, Autism and ADHD Podcast - host Ben Branson chats with neurodivergent creatives, entrepreneurs, and experts to see how great minds... think differently.
Host: Ben Branson
Producer: Bella Neale
Video Editor: James Scriven
Social Media Manager: Charlie Young
Music: Jackson Greenberg
Brought to you by charity THE HIDDEN 20% 1203348
Spotify: open.spotify.com/show/2g80pw5...
Apple Podcasts: podcasts.apple.com/us/podcast...
Website: www.hidden20.org
Instagram: / hidden20podcast
TikTok: / hidden20podcast
LinkedIn: / prismnd
Ben Branson: / seedlip_ben 
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This is all sooooooooooooo relatable. I love every bit of this talk. It's so incredibly relatable. It's an oddly new experience to see a setting of two ppl talking and it's not just mutual understanding but also relatable on the very personal everyday decision level.
It feels to me like diagnosis (and to a lesser degree, self-diagnosis) gives you *permission* to be different. I’ve been testing the waters with removing the many layers of masking I’ve built up over the years and talking about it more, and finding that some of my closest friends already knew, and were surprised I didn’t. I’m gradually finding that I have more capacity as I start to unmask, after getting through the initial exhaustion of self-analyzing the motivations of every action, and with perfect timing too, because I don’t think I would be able to handle my current daily life if I hadn’t known. I probably would have ended up with a mental breakdown, quit or gotten fired, and had to take a hiatus for a month or two, but now I have a word that I can use to instantly give people a lot more context and justification when I ask for what I need, when I previously would have just internalized it all until I had a massive shutdown. People who wrongly self-diagnose make me cringe, but who is it affecting, really? You’re right; it really isn’t the biggest problem we have.
It's more like 'that's why my life has been so messed up'
As a GenXer we didn’t get diagnosed with anything. No mental illness, no disabilities (unless physically apparent). As a child I was labeled as shy, over active, disruptive, loner, distracted, gifted…….I struggled to make friends. I preferred to be alone, to read or play solitaire. For hours. I hated having my stuff touched or moved. I learned to mask at a really young age. Meltdowns were internalized because “tantrums” were punished. I wanted to be a good girl. I developed an eating disorder at 10 years old. I was diagnosed with ADHD at 48 and now I realize that I am also on the spectrum. I am rigid, black/white, struggle with transitions, prefer to be alone, struggle with socialization, struggle with focus, and mask like crazy so much so that I have no idea who I am. I know I am AuDHD because my 17 year old is and he said, “duh Mom, I have known for years.”
So sweet ♥. This last reminds me of when @DavesGarage said he was coming out as autistic to his mechanic who was under the car when Dave said "I think I might be a little bit autistic" and his mechanic carries on without missing a beat and says "Just a little bit, huh?"
In my experience as self-diagnosed, after struggling to figure out my son’s struggles, I’m going to point a finger at schools for being the reason the “middle-class white boy” traditionally got the diagnosis. Schools are great at creating intolerable situations for autistic and adhd kids. So desperate parents (with the resources) take their “difficult” children to psychologists and therapists. Girls, in particular, often manage to not be a “problem” for the school system, so do not get the recognition or assistance they need. (hoping it is somewhat different now. I mean, there was nothing for different, awkward, difficult kids back in the 60s when I was suffering through school and life.)
School did not pick up on my then 10 and 8 year old being autistic in 2023. It was my selfdiagnosis followed by the realisation that the girls might be too that led up to them now being diagnosed and supported and me still trying to get diagnosed. (I was on a waiting list for 13 months and then they just this week announced that they can't do a diagnostic traject anymore due to lach of personel... so now my health insurer is looking for another provider....
@@katereed4764 even in the 80s there was nothing, at least in the UK
“Let’s see how great minds think differently.”
LOVE that. 💜
I take my meds the same way. When I know I need to get a lot done and I need to focus, I take my meds. When I know I don’t have deadlines, I don’t. HUGE difference. And yes, the mind is quiet.
One of the jobs I loved most was when I worked in a library cataloging books & maps.
That job sounds so stimulating but also relaxing at the same time.
Yaaay😮
I’m a Librarian and I think it’s the only job I’ve ever had that I could keep. ❤
I think a big part of educating people on our traits is a conversation involving empathy. For example, at 35, and as a woman, plenty of people have treated me when I was young as if I was not interested enough in romantic relationships in order to carry on the human species. But people interested in the well being of things outside of humans have empathy that is farther reaching than neurotypicals. Because, if for example bees went extinct humans would follow shortly after. So being obsessed with bees can save humans even if someone is uninterested in human relationships. Neurotypicals don't want to think about this because it hurts their feelings personally. And view us as some kind of Thor like comic book villains. But look at how much genocide is occuring, people brought to life just to be tortured, due to human activity causing climate change. And they say we are the evil ones for literally just understanding how much they hate themselves because of their homicidal and suicidal technology
My parents hid it never told me, like it was a dirty little secret. How I found out is too long a story to go into, but now at 53 I am finally meeting the real me. Three years plus waiting list or two and a half thousand pound where I am, so cool if you can afford it as always.
I’m sixty this year and I was diagnosed at five. I had issues at eighteen months.
My parents didn’t tell me or the rest of my family apart from my eldest sister.
My sister told my wife last year before Christmas ,as my mother is slowly dying.
She told my wife I should have a discussion with my mother before she dies. It’s hard as she has mild dementia and is reluctant to talk about it.
I self diagnosed a long time ago, the knowledge that they knew all along came as a shock and I feel severely let down as l also had a stammer until my mid thirties.No help with that either. I had to overcome that myself.
I’m getting help now and paying for it myself.
I’m getting reassessed through the GP.
I want to know where l am on the neurodivergent scale.
I know where you are coming from.
Life’s been much harder than it should have been.
My wife has been so supportive and luckily her sister is a psychologist and reassures me that it’s not me imagining lm autistic, l am.I have self doubt as l have got this far in life even though it has been a struggle.
@@alunwilliams2142 sadly, my mum passed away when I was 35, aggressive breast cancer, so feeling you too. It's a screwed-up world, but at least we have answers now. At least we have a voice now. It doesn't help us much, but at least today's generation hopefully won't have the same struggles.
I’m glad children now are getting the help they need and hopefully this can’t happen again.
Sadly the school knew as it was a teacher who spotted it and spoke to my mother.
There was help available at that time as l have researched it .
The standard answer l get and you probably do is it was a different time them.
Thank goodness for channels like this and other help through the internet.
I wish you well in the future 🤞
@@alunwilliams2142 Yeah, that answer always makes me laugh, regardless of time period it doesn't ever make it right or okay. It's always a pleasure (irrespective of the subject matter) to chat to someone in our community. I wish you strength for yours.
That's awful. Hope you get dx and find peace. I'm also late self dx at 58.
Self diagnosing my autism has dramatically improved my mental health by just simply allowing myself to be autistic. Even after the shutdown that made me 100% sure, I am still researching and reading up to get a better understanding of my behaviours and what I am masking.
I wish I had been diagnosed that young. I was diagnosed at age 57 and have written my own book 'Living with Autism Undiagnosed '
Ooof😮
Me too. Just diagnosed in my 40s & have an autistic child. Didn't realise that I was struggling until this. I want to read your book!
@ruthhorowitz7625 I'd like to read your book too
@@laynahodgson4994 awesome 😃
Got diagnosed myself as soon as I turned 18. Diagnosed again at 24 when my mom realised she might have it. Took the same meds and dose and brand whicj worked wondere. Suddenly I'm paying 93euros a month instead of 11eu🎉
More stress = more severe symptoms until I reach burnout and then I don’t function at all.
I also wanted to mention, I love what you’re doing! I watched the intro when it first came out and subscribed, but forgot about the bell and got excited when I saw all these videos all of a sudden
I feel like - from my self-diagnosed perspective, that it feels more like a series of dials that have a wide range across the population of ASD and ADHD ppl, and each individual has a range on each of those dials that might be the whole dial or might just be one spot and at any given point a person on the spectrum might have their dial for sensitivities etc turned to their max or to their min and it's all very personal and varies based on the settings on the other dials and other inputs. Like being overstressed due to circumstances out of our control, like chaos in our lives, a bad health week etc.
I was diagnosed with Bipolar but not until I was 24. I had already failed out of high school and my Navy computer school too. I have to admit that the meds for Bipolar are very helpful to me. I wish there was some kind of financial support here in the States instead of just disability. I have been on disability for Bipolar for 23 years now. $900 per month is really not enough. I can't afford to go off of disability for another six years because then I'll be 65 and I'll be getting SS retirement. If I lose my Bipolar diagnosis now I lose my tiny disability checks. I hate not being able to work. Sometimes I'm unable to shower for over a week. I really hate that. I'm still trying to find the strength to work out, even just a little. Internally I'm still quite exhausted by life. When I was working I would get exhausted by noon. I couldn't go out at night. I'm married now and my wife loves me even though I'm Autistic. She has ADHD and is a member of MENSA which is why we never run out of things to talk about. People tell me that I have pretty privilege so I have to accept that even though I don't see it myself. I've learned how to be less blunt and that's one of the tougher things I had to learn in masking. I have absolutely no idea how to find other Autistic people near me. I live in a small town of roughly 5,000 and I'm 45 miles from Austin which is not a big city but it's the closest. Since I have bad anxiety while driving I can't just drive to Austin or Houston to hang out with people.
The evidence from genetic research seems to be pointing toward a large number of genes being involved in autism. It looks more and more like there are a large number of people who have some of these gene variations and will have strong autistic traits but not necessarily reach the formal diagnostic threshold.
If they don't meet the diagnostic threshold, then their "autistic" traits are likely very weak. The diagnostic threshold is pretty low, especially compared to where it was 50 or 60 years ago.
I wish it was even more normalized to speak about the medication by name. I'm curious which one she's talking about and would be directly helpful for me to find out. I've gone from Stims to buproprion/welbutrin and nothing worked perfectly. That "capitalism machine' was why I try not to stay on welbutrin. The stims keyed me up and made me agitated but welbutrin does that in my homelife because, yes exactly, I can't 'rest'. It makes me feel anxious and freaked out to be even remotely still. A lot of the times it feels great and I feel capable and I can focus on what I want for the first few hours of the XR, but then the last 2 hours are agitation and I worry about coming off way harsher than I mean to my wife, which happens almost every time I end up taking the meds.
I feel like ibe rarely masked unless i was in a situation that felt highly highly uncomfortable or even socially unacceptable to me i would have masked yet felt like "this so wrong i dont like this at all"
And my way of stimming wasn't reallu visible it was more of and still saying affirmations to myself repeatedly ans for years it was also crying and rocking and shaking when on my own at home to just release all the stress
Feel so bad for all of us who had or still feel we have to mask 😢
36:34 - "my life was basically a cycle of: run myself into the absolute ground, be unwell, recover, go again." -- so relatable! ❤🩹
Thanks! :j
Great Podcast. Spot on with everything. Imagine what it's like in ireland. Our HSE is Not fit for purpose THERE ARE OVER 80,000 people in ireland with ADHD only 10% are getting diagnose! !
If you're not non-verbal, can control your meltdowns, and don't need constant vigilance and support from your parents to even dress and eat, then you have mild autism - it's a relative thing, it doesn't mean you're fine. Simple as that, not sure why people complicate it and pretend like it's all the same. Even the DSM has 3 levels.
Thank you! I'm getting really fed up of people erasing the broad spectrum of severity in autism. They have absolutely _no clue_ just how severe and profound autism can be!
Yes. I have dual diagnoses but imposter syndrome because I know that other people have *much* greater challenges than I do. "Low support needs" is a good label for me.
Messed up thing is that I've noticed they do that to a lot of people the whole not diagnosing correctly thing
hidden20 became my cozy safe place, i have felt so alone for so long in my own head, been diagnosed at 20 and im now 24. it signitificantly changed my life for the better and here in Brazil we have our own version of NHS and just like her I had to go private.
In my case, I just straight out thought I was suffering from dementia after literally blanking out on test. Which led me to seek medical care, and I had the best of luck of finding my psychiatrist, she is the best medical professional I have ever had (Dra Tayana Leandro) and turns out It it was au-dhd all along.
Ellie is great
As a late diagnosed autistic person with adhd, she doesnt speak for me and i dont relate. I think she is very privileged with her platform and her size of her platform is the only reason she has been invited to all these talks. I want to hear from people who dont have such a platform and are still struggling in so many other ways. Its just a bit all self-serving to me.
I had some similar thoughts. Thank you
I can understand where you're coming from, but it's often done with people who have large platforms as they can reach more people. A mix of both leaning more heavily towards people with large platforms would probably work best as it can reach and possibly help the largest amount of people.
I'd also recommend Special Books by Special Kids on youtube for something that you may find more relatable, as they are interviews often done in the houses of people who have reached out to the channel.
@@psyhense is this directed at me or someone else?
@@psyhense I see what you mean. I'm just aware that there are not enough platforms that allow for those who are not well-dressed and appear 'normal'. In the autistic community, we have these women with a large amount of money/clothes/things and it screams privilege.
I do watch SBSK. Love that channel. There have been some really impactful autistic people interviewed on there.
I do appreciate that she addresses this - she talks about being "palatable" and masking being requirements for her being invited to things. Compromising authenticity and being unmasked in order to be visible. And then she was saying she wants to have others - people with different/higher support needs - on her channel and in her various medias. So she does seem to be aware she doesn't speak for everyone.
I was pulled in by the deadline but then drawn away once she started using Intersectional language to describe the origins of ADHD studies. Now the whole conversation feels less credible from that starting bias. Instead of focusing on neurodivergent issues, people will only hear Men vs. Women and totally politicized the entire conversation. The lack of clinical evidence to make her points with speakers like this only fuels popular psychology as misinformation. Such a bummer. Gonna keep listening for any good bits just incase though. - Random ADHD/Dyslexic guy
yeah she even divided young boys into cis and not cis, a bit odd I thought too
That's unfortunate and frankly closed-minded. These terms help distinguish groups of people and how society views and tends to respond to their needs in the present and through history. There's no intention to exclude, there's only an intention to be precise in order to address potentially under-served people groups.
You are, in fact, only helping to politicize language that's already widely used in fields like sociology and psychology. Over the last several years, there's been an ill-intentioned effort from one side of the political spectrum (i.e., the conservative side) to mock or even attack the use of these terms. It's certainly part of a wider effort to instill a narrow, simplistic understanding of the world (usually rooted in religion), and discourage basic empathy for others who are different from you, making you easier to manipulate politically. The world and people in it are complex and multifaceted, but that's no reason to fear it; it's a reason to immerse yourself in it.
@@SoupFormifamli Ultimately this issue is more of an underlying philosophical one concerning language and how it is used. The political conflict and partisanship are downstream of this. These intersectional "Terms" being used are founded in Postmodern and Marxist Identity philosophy. While inclusivity and precise understanding may be the intended goal of this language for some, that is not the effect it has on society. If you read the founding Intersectional/Marxist/Postmodern thinkers, it is clearly stated that "inclusivity" and "Precision" are not the intended goals. These philosophies oversimplify the complexity of human nature into simple power dynamics based on identity groups. They do exactly what you claim to be the problem. Many studies on poorly executed DEI programs show this constant dissection of identities only creates further division. Intersectional language is loaded with moral judgments and this also creates an "Othering" effect. It is "Political" by design so I am in no way changing the intended function of this language by commenting on it here. Just because professional fields like psychology and sociology use intersectional language, that does not prove it as an effective tool for positive change. You will find endless evidence institutional failure with psychology and sociology studies if you are open minded enough to see it. Study reproducibility and fraudulent publication are a constantly growing problem within Psychology. This is largely cause by the insertion of intersectional ideas into institutional practice over the last several decades. It abandons empirical evidence for subjective ideological values. I say this as a life long Democratic voter and Atheist. It's easier for me to see issues with republican/conservatives because I've done it my whole life. It's much more difficult to see the issues within the Dem party or own political biases. I've been very fortunate to grow up with diverse populations and ways of thinking. I assure you my issue is not thinking too simplistically through these colossal ideas. It would be much easier to live in fear if I were less curious. While I slightly disagree with some of your points and insults to my intellect I do appreciate the comment.
I just wish she would speak a little less dialect, it's very hard to follow her talk. (the auto-generated subtitles are not very good and thus only a small help)
Those who can "mask" most of the time have little to no impairments. Always preaching there is no such thing as "mild" etc. Able to do things like public speaking etc.
And they think they can talk for everyone
@@marianne7659 and generalise common traits that could apply to half the population, which have no actual impairments.
Seems to be a popularity contest for many of these influencers. For profit.
What they are doing is very bad. It’s become the asperger community but you cant even say that word anymore. Its like classic autism and profound autism doesn’t even exist. Just level 1 Alot of them don’t even have a diagnosis
23:48
@@marianne7659 30:30
As a GenXer we didn’t get diagnosed with anything. No mental illness, no disabilities (unless physically apparent). As a child I was labeled as shy, over active, disruptive, loner, distracted, gifted…….I struggled to make friends. I preferred to be alone, to read or play solitaire. For hours. I hated having my stuff touched or moved. I learned to mask at a really young age. Meltdowns were internalized because “tantrums” were punished. I wanted to be a good girl. I developed an eating disorder at 10 years old. I was diagnosed with ADHD at 48 and now I realize that I am also on the spectrum. I am rigid, black/white, struggle with transitions, prefer to be alone, struggle with socialization, struggle with focus, and mask like crazy so much so that I have no idea who I am. I know I am AuDHD because my 17 year old is and he said, “duh Mom, I have known for years.”