Totally In burnout I had daily meltdowns and couldn't go grocery shopping A year ago I could just work about 15 hours Now I am healed and can work 30 hours
Yes. Perimenopause threw a large bomb into my life these last couple of years. It's messed with my memory, energy levels, it's introduced me to both hot and cold flushes, panic attacks (I never had them before), sleep problems, muscle and joint pain off and on, mood swings and just sent me for a spin. Some days I just can't people at all and I've never had to stim as much as I currently do. I'd like to say that it's easing off but I don't want to jinx anything 😳
Sending virtual hugs your way Purple Ella and hope youre in a space where you can look after yourself. I absolutely know this different levels of ability to function. Ive been battling autistic regression for a couple of years now. Online, and/or from afar, the communication is okay-ish (still go through fluctuations with that too), but my abilty to mask or be in any social setting has been severely degraded. There's stress, there's trauma, then there's trauma that stacks, one on top of tje other, without sufficient time and peace to heal. Its tje constant battle to stay afloat and keep pushing and pushing, then just not being able to have the energy to both push anymore, or look after yourself. Everything about autism is intensified when there isnt that breathing space we so desperately need.
That’s been my experience. I’m still a shadow of who I was at my best, and certain classical traits are much more pronounced than they used to be. Meltdowns have improved of late, but I fear meds may get most of the credit for that. What’s frustrating on the ADHD front is that you can find multiple “experts” who will note that there is almost NO research to date on ADHD in older adults, but some of them will then turn around and say that ADHD can get better as you get older, but NEVER gets worse. Newsflash: pretty much everything can get worse as you move into senior territory. Russell Barkley puts it far better: he notes that while traits don’t change, impairment can increase due to circumstances. The same is true for autism. For example, I could manage a loud, crowded space better when I was younger. Now it’s out of the question.
The spectrum is definitely not linear. I think of it as a page of pixels, each a different colour, and representing a trait. Within the centre areas are the triad of impairments (the core diagnostic criteria). Outside of this are a random selection of pixels (comorbid traits) at differing levels, ranging from 0-100 (or 0-256 if you're a sound/lighting nerd! 🤓😊) The chances of someone having the same diagnostic criteria are reasonably probable, but to also have the same comorbid traits, at the same level is astronomically unlikely, hence 'if you've met one autistic, you've met one autistic'. There are things that 'classic autistics' find easy, that I find cripplingly difficult, and vice versa. 'High/low functioning' generally refers to the visibility of the traits, or the daily care needed, not the difficulty of the traits that we actually experience. This is where functioning labels fall over, and cease to address the difficulties that the majority of autistics experience.
Needless to say, a PIP assessor (usually with zero professional autism experience) would read/hear my post, and say that Miss 'x' is articulate, therefore zero points (it's happened to me twice, and both times were overturned at tribunal (helped by a recording of the assessment).
@@ohitsthem7601 Thanks. It's worth noting that the theory of the autistic spectrum was conceived by Lorna Wing, who also came up with (and later defended) the term 'Asperger Syndrome'. There was good work that she did, in bringing the ideas of non-classic autism into focus, but ultimately it was still all from a neurotypical perspective. Aside from the obvious issues with Asperger, I think there are other things, such as a linear spectrum, that really haven't stood the test of time, and in many ways have actively harmed autistics (the knock-on effects of a linear spectrum being the production of functioning labels, which in turn are a breeding ground for ableism). Saying that, she certainly broke ground on autism, and I think that many of the issues were due to her ignorance of a new subject, rather than malice.
This explains why it became much more apparent after menopause and having other major health issues, most likely from high masking autistic burnout. I feel so non-functional now after functioning for over 45 years... Sigh.
I’m a 73 year old man living in the USA. I have long suspected that I’m on the autistic scale but I have resisted classifying myself as such in fear of latching on to an autistic identity to conveniently explaining away my social difficulties, obsessiveness and behavior routines (ruts) that I fall into. Ironically, even though I did poorly in school up to the age of 23, I worked hard and became an educational psychologist diagnosing learning and behavioral problems in children. But I’ve seen many people misdiagnosed in my career who then identify themselves as being learning disabled, ADHD, bi-polar, schizophrenic, etc., which confuses them further after a period of relief. I do feel relieved in considering myself autistic, which increases my skepticism that this might be the reason why I seek such a diagnosis. I’m sorry to be so pessimistic, but that’s how I live.
Oh, man... Had a falling out about this with someone... She said something about how supports shouldn't be removed because a person is doing well with. I tried to agree... With caveats... The caveats were, "yes absolutely, don't remove supports that are needed, but don't keep supports that aren't needed..." I *might* have put things poorly, but her child when I mentioned it said, "yeah mum's a bit that way..."
I just recently took the questionnaire from Embrace Autism, I was surprised to read comments and go through my memory of taking this questionnaire before, it definitely can shift a bit,
Absolutely, especially nowadays certain people like to generalize and stereotype and like to make the things universal from what they see from one person or at least from group of people . . . But each autistic person has all different spectra . . .
Hi Ella missing your content…hope everything is ok as you haven’t posted in awhile. I’m really resonating with this one as my son who is 24 has shut down a few times in the past month where he just cannot speak at all and this has never happened before 😢 Cheers from Australia 🇦🇺
I was diagnosed as Non-verbal Developmentaly Delayed when I was about 6 years old. I have worked very hard to become verbal with my mom's help. Now they call it Non-Verbal Learning Disorder. I am in my 50's. And I still have some of the NVLD traits. And I definitely identify with Aspergers. I am working part-time, but I find that I am seriously burned out. I feel like I'm being forced to walk around in shoes too small on eggs. I do homecare for a dear friend. I mask around her constantly because my autitistic traits drive her crazy. And then I'm unable to do much of any housework because I just sent her into meltdown mode. I end up consoling her like it's all my fault she threw a tantrum. I can't even unmask and relax at home because I'm afraid she's going to call me at any moment. She picks up on my unmasked state over the phone and will throw a tantrum. And then I have to pretend again it's all my fault. She tells me that I can be myself around her, but I know that just isn't true. I can't even STIM at home! I can't even zone in on anything and tune everything else out. I don't want to lose her friendship and my job. She's the only one that I can share secrets with and have real conversations. My other friends and family members can't seem to put up with my autitistic traits for very long. Also, no one else seems to want to carry on a conversation with me. I'm stuck and very lonely. I have forgotten how to be alone and totally enjoy it.
Yes, this is why I loathe the binary label high/low functioning. Apparently, I'm extremely high functioning, according to the spectrum. However, I can't work under current circumstances, have an eating disorder, have agoraphobia and barely go out, half the time I can't look after myself, my finances or my home. I need some help with nearly everything much of the time, which is why I receive social care each week. But most people never see that. I'm high masking more than high functioning. I experience my autism as a multidimensional constellation of traits, abilities and disabilities, that, like you say, Ella, morph and change depending on the context. Like anyone's situation, it's either conducive and provides opportunities for wellbeing and reaching potential, or in my situation, as for many of us, especially those of us who are diagnosed, our circumstances are not enabling, and every.single.thing. is a battle.
The problem with observation based diagnoses is they encourage the idea that impairments are all things that are easy to perceive externally. Which is why decent diagnoses involve more than that. When I was evaluated for ADHD, it was the one time in my life that my wretched academic career did me any good. It has been possible to hide that most of my life, because I present as “bright.”
Ugh the first 30 seconds of your video here- I was trying to post on a Facebook group about something and my post got dented because I used the word “spectrum” apparently that’s not OK anymore? It’s somehow insulting to those who are level 1 which also was banned from discussing in this group.
That's what Ella meant is the misconception of what "spectrum" means. But it's NOT a linear scale of "functioning" aka "a little" vs "a lot" of autism. They meant that every type of trait and domain is in constant flux, with a variety of factors that affect each one.
@@resourceress7 although the comorbids can vary greatly, the diagnostic criteria are very well defined. Nobody is 'a little bit autistic'; it's like being preganant: you are, or you aren't.
Totally
In burnout I had daily meltdowns and couldn't go grocery shopping
A year ago I could just work about 15 hours
Now I am healed and can work 30 hours
Yes. Perimenopause threw a large bomb into my life these last couple of years. It's messed with my memory, energy levels, it's introduced me to both hot and cold flushes, panic attacks (I never had them before), sleep problems, muscle and joint pain off and on, mood swings and just sent me for a spin. Some days I just can't people at all and I've never had to stim as much as I currently do. I'd like to say that it's easing off but I don't want to jinx anything 😳
I'm so sorry, that sounds absolutely horrible. I hope you find a way for it to not suck so bad 💖
Sending virtual hugs your way Purple Ella and hope youre in a space where you can look after yourself.
I absolutely know this different levels of ability to function. Ive been battling autistic regression for a couple of years now. Online, and/or from afar, the communication is okay-ish (still go through fluctuations with that too), but my abilty to mask or be in any social setting has been severely degraded.
There's stress, there's trauma, then there's trauma that stacks, one on top of tje other, without sufficient time and peace to heal.
Its tje constant battle to stay afloat and keep pushing and pushing, then just not being able to have the energy to both push anymore, or look after yourself.
Everything about autism is intensified when there isnt that breathing space we so desperately need.
That’s been my experience. I’m still a shadow of who I was at my best, and certain classical traits are much more pronounced than they used to be. Meltdowns have improved of late, but I fear meds may get most of the credit for that.
What’s frustrating on the ADHD front is that you can find multiple “experts” who will note that there is almost NO research to date on ADHD in older adults, but some of them will then turn around and say that ADHD can get better as you get older, but NEVER gets worse. Newsflash: pretty much everything can get worse as you move into senior territory. Russell Barkley puts it far better: he notes that while traits don’t change, impairment can increase due to circumstances. The same is true for autism. For example, I could manage a loud, crowded space better when I was younger. Now it’s out of the question.
Amen, Ella!
I just got my psychological eval back. I was diagnosed with autism spectrum disorder type 1, and ADHD.
I needed this today, thank you
The spectrum is definitely not linear. I think of it as a page of pixels, each a different colour, and representing a trait. Within the centre areas are the triad of impairments (the core diagnostic criteria). Outside of this are a random selection of pixels (comorbid traits) at differing levels, ranging from 0-100 (or 0-256 if you're a sound/lighting nerd! 🤓😊) The chances of someone having the same diagnostic criteria are reasonably probable, but to also have the same comorbid traits, at the same level is astronomically unlikely, hence 'if you've met one autistic, you've met one autistic'. There are things that 'classic autistics' find easy, that I find cripplingly difficult, and vice versa. 'High/low functioning' generally refers to the visibility of the traits, or the daily care needed, not the difficulty of the traits that we actually experience. This is where functioning labels fall over, and cease to address the difficulties that the majority of autistics experience.
Needless to say, a PIP assessor (usually with zero professional autism experience) would read/hear my post, and say that Miss 'x' is articulate, therefore zero points (it's happened to me twice, and both times were overturned at tribunal (helped by a recording of the assessment).
Very well said
@@ohitsthem7601 Thanks. It's worth noting that the theory of the autistic spectrum was conceived by Lorna Wing, who also came up with (and later defended) the term 'Asperger Syndrome'. There was good work that she did, in bringing the ideas of non-classic autism into focus, but ultimately it was still all from a neurotypical perspective. Aside from the obvious issues with Asperger, I think there are other things, such as a linear spectrum, that really haven't stood the test of time, and in many ways have actively harmed autistics (the knock-on effects of a linear spectrum being the production of functioning labels, which in turn are a breeding ground for ableism). Saying that, she certainly broke ground on autism, and I think that many of the issues were due to her ignorance of a new subject, rather than malice.
Oooh I like the idea of pixels. 😁 I see it as a constellation, like the stars in the sky.
@@spundleyYes, I've also had this experience. Check out the PIP autism guide from Benefits and Work. X
This explains why it became much more apparent after menopause and having other major health issues, most likely from high masking autistic burnout. I feel so non-functional now after functioning for over 45 years... Sigh.
Thanks! 😊
(It's helpful to hear.)
[I think if it as a colour wheel]
I’m a 73 year old man living in the USA. I have long suspected that I’m on the autistic scale but I have resisted classifying myself as such in fear of latching on to an autistic identity to conveniently explaining away my social difficulties, obsessiveness and behavior routines (ruts) that I fall into. Ironically, even though I did poorly in school up to the age of 23, I worked hard and became an educational psychologist diagnosing learning and behavioral problems in children. But I’ve seen many people misdiagnosed in my career who then identify themselves as being learning disabled, ADHD, bi-polar, schizophrenic, etc., which confuses them further after a period of relief. I do feel relieved in considering myself autistic, which increases my skepticism that this might be the reason why I seek such a diagnosis. I’m sorry to be so pessimistic, but that’s how I live.
Oh, man... Had a falling out about this with someone... She said something about how supports shouldn't be removed because a person is doing well with. I tried to agree... With caveats... The caveats were, "yes absolutely, don't remove supports that are needed, but don't keep supports that aren't needed..." I *might* have put things poorly, but her child when I mentioned it said, "yeah mum's a bit that way..."
I just recently took the questionnaire from Embrace Autism, I was surprised to read comments and go through my memory of taking this questionnaire before, it definitely can shift a bit,
Thank you for sharing.
Absolutely, especially nowadays certain people like to generalize and stereotype and like to make the things universal from what they see from one person or at least from group of people . . .
But each autistic person has all different spectra . . .
This is why I exercise and dance 🩰🪩
Hi Ella missing your content…hope everything is ok as you haven’t posted in awhile. I’m really resonating with this one as my son who is 24 has shut down a few times in the past month where he just cannot speak at all and this has never happened before 😢 Cheers from Australia 🇦🇺
Thanks, Ella. 💖
I was diagnosed as Non-verbal Developmentaly Delayed when I was about 6 years old. I have worked very hard to become verbal with my mom's help. Now they call it Non-Verbal Learning Disorder. I am in my 50's. And I still have some of the NVLD traits. And I definitely identify with Aspergers. I am working part-time, but I find that I am seriously burned out. I feel like I'm being forced to walk around in shoes too small on eggs. I do homecare for a dear friend. I mask around her constantly because my autitistic traits drive her crazy. And then I'm unable to do much of any housework because I just sent her into meltdown mode. I end up consoling her like it's all my fault she threw a tantrum. I can't even unmask and relax at home because I'm afraid she's going to call me at any moment. She picks up on my unmasked state over the phone and will throw a tantrum. And then I have to pretend again it's all my fault. She tells me that I can be myself around her, but I know that just isn't true. I can't even STIM at home! I can't even zone in on anything and tune everything else out. I don't want to lose her friendship and my job. She's the only one that I can share secrets with and have real conversations. My other friends and family members can't seem to put up with my autitistic traits for very long. Also, no one else seems to want to carry on a conversation with me. I'm stuck and very lonely. I have forgotten how to be alone and totally enjoy it.
Very true!
Also... For whatever reason it seems to cut off...
Yes, this is why I loathe the binary label high/low functioning.
Apparently, I'm extremely high functioning, according to the spectrum.
However, I can't work under current circumstances, have an eating disorder, have agoraphobia and barely go out, half the time I can't look after myself, my finances or my home. I need some help with nearly everything much of the time, which is why I receive social care each week. But most people never see that.
I'm high masking more than high functioning.
I experience my autism as a multidimensional constellation of traits, abilities and disabilities, that, like you say, Ella, morph and change depending on the context.
Like anyone's situation, it's either conducive and provides opportunities for wellbeing and reaching potential, or in my situation, as for many of us, especially those of us who are diagnosed, our circumstances are not enabling, and every.single.thing. is a battle.
The problem with observation based diagnoses is they encourage the idea that impairments are all things that are easy to perceive externally. Which is why decent diagnoses involve more than that. When I was evaluated for ADHD, it was the one time in my life that my wretched academic career did me any good. It has been possible to hide that most of my life, because I present as “bright.”
Hi do you talk to yourself? its something done for most of my life. i've been looking into it and apparently people with adhd and asd do it.
I have question over if i have baby when i have mild austim i am worry if i give my own children my austim.
the name purple ella reminds me of purple aki for some reason...
Hi Ella, My name is Micah! and I have it too.🌈🤯
Ugh the first 30 seconds of your video here- I was trying to post on a Facebook group about something and my post got dented because I used the word “spectrum” apparently that’s not OK anymore? It’s somehow insulting to those who are level 1 which also was banned from discussing in this group.
❣💌❣
Yess aka high functioning and low functioning
That's what Ella meant is the misconception of what "spectrum" means. But it's NOT a linear scale of "functioning" aka "a little" vs "a lot" of autism.
They meant that every type of trait and domain is in constant flux, with a variety of factors that affect each one.
@@resourceress7 ahh i see ok
@@resourceress7 although the comorbids can vary greatly, the diagnostic criteria are very well defined. Nobody is 'a little bit autistic'; it's like being preganant: you are, or you aren't.
Your woke