Chapter 21 Understanding Autism
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- Опубліковано 20 лип 2024
- Chapter 21 recapping my unexpected Autism and ADHD year: this week I talk about the fantastic online course Understanding Autism run by the University of Kent and available on the FutureLearn platform.
I talk about how powerful taking this course was on my own journey of understanding and acceptance and how hearing from actually autistic academics was liberating and inspiring five months into realising I was also neurodivergent and not just broken in some way.
Please do like and share this video and subscribe to my channel if you find any of it useful, or message me to get in touch and connect.
Contact email: amineurodivergent@gmail.com
Some useful links:
Understanding Autism course: www.futurelearn.com/courses/a...
The Art of Autism 'spectrum' explanation: the-art-of-autism.com/underst...
Dr Damian Milton on the Double Empathy Problem: • Studio III Atlass - Da...
Autism UA-cam channels from womens' perspectives:
NeurodiverJENNt: / @neurodiverjennt
Gemma's Journey Grace: / @gemmasjourneygrace
Foster on the Spectrum: / @fosteronthespectrum
Purple Ella: / @purpleella
Yo Samdy Sam: / @yosamdysam
AQ Autism Self-Test:
I'm going to keep posting the link to the AQ Self Test for autism every Sunday in case this is the first video in the series people come across. Take the self test (remember it's JUST a self-test) and see how you score. You may have been on the autism spectrum all along and just had no idea, like I was:
psychology-tools.com/test/aut...
ADHD Self-Test:
(with all the same caveats as above) an ADHD self-test. ADHD is even MORE common than autism (and many of us will have both); the vast majority of ADHDers just struggle through from childhood through adulthood having no idea that they even HAVE ADHD, let alone working out strategies to cope and deal with it all better to be happier and less frustrated with ourselves and others.
psychology-tools.com/test/adu...
it's a skill to be two-faced in a neurotypical world, that resonated so strong with me. I've been dealing with that my whole life and caused my much suffering in both career and relationships. Thank you, this is very valuable content.
Autistic education from autistic people is a shocking concept indeed...
It has been a joy to follow you through the pages of your diagnosis journey.
Thank you for sharing this course with us. What a gem. We do indeed need more autistic voices included in the research.
Hearing of an academic course that is dispelling myths like lack of theory of mind and reframing the deficits model of autism is so refreshing.
The point about neurotypicals mimicking social behavior until it becomes second nature and neurodiverse people mimicking social behaviors and it never quite becoming second nature for them even though they are engaging in the same observational behaviors was pretty powerful in its truth...
Also a great point about neurotypicals often having more difficulty understanding neurodivergent people than the verse because we have spent the majority of our lives trying to understand and study neurotypical behavior within that double empathy problem framework.
Politics and CEOs drive me insane because it sounds like they spend hours using words that mean absolutely nothing!!!
Thank you also for touching on female masking and for giving a shout out to some of us neurodivergent female creators.
It is indeed more difficult for females to be identified as being on the spectrum because they are more socially motivated and mask their social struggles. They camouflage themselves to look a lot more like neurotypicals. However, I have known a lot of males who have said they strongly identified with the masking traits of women.
Too funny that this course used ingredients for cake as a allegory for the idea of specific ingredients being versatile that could be part of a cake or an omelet to parse out the idea that individual human traits don't equate or negate a specific diagnosis. I used a similar example in one of my videos. It would be easy to see how multiple creators could come up with this idea because the traits of autism being normal human traits leading to well-meaning people saying we're all a little bit autistic is SO prevalent.
Thanks for this awesome video java cake!
Thanks! Yeah, the mimicking social behaviour never becoming second nature was really powerful - there's more on it in the second week of the course which I'm going to get into in next week's video. It actually has strengths as well as challenges which was really interesting to me, in spite of how utterly exhausting it can be. Politics and corporate speak are full of 'nothing' words and phrases that imply action but are absolutely paper thin when scrutinised. Using this language is second nature to some, but it's like dancing over coals. It is a skill and there's a part of me that admires it, and aspired to be able to do it for a while. Paying lip service to 'goals' and 'strategies' and seeing how much you can get away with. I think I spent years trying to work out the combination-lock to the fortress and when I finally got a glimpse inside saw it was ... just kinda empty ...
I couldn't believe i was asd/ adhd. At 57... complete burn out. Super high masker. I shop in the same grocery store for 30 years. I can't go into another store near my house. I drive the distance for comfort.
The more I learn about it, the more I see it. The more I see, the more I learn.
Thanks for your contribution.
Everyone, absolutely everyone, is on the HUMAN spectrum… but not everyone is on the Autism Spectrum.
This is true.
@@amineurodivergent ✊🧡👍
I started the Kent course, and you're right in that it's helpful beginning with the basics which is great for me as an older diagnosed adult. And thank you for mentioning the women's channels on UA-cam doing amazing work! In the USA, we also have Olivia Hops, Irene w/ The Thought Spot, Mom on the Spectrum, Claire w/ Woodshed Theory, and Stephanie Bethany... just in case one of your other viewers needs to know 😊
Thanks for sharing these! I've watched a couple of Thought Spot videos and will check out the others too.
@@amineurodivergent all the above, plus Neurodivergent Rebel. Lyric is an AFAB non binary person. Paul Micaleff, and Austrailian man from the channel Autism from the inside has some interesting interviews with autistic women, plus lots of interesting content relevant to people of all genders, including on the topic of masking. Here in the UK, Dana Andersen does great vlogs. There is also I'm Autistic, now what?
Great post. Very informative. Great beard too! 😊
🤣- thank you so much!
That 🧔♀ is a thing of beauty. Well done you and thanks again for your series. You're making so much sense of everything.
Thanks Anne!
Your video again is so well thought out, and ive watched this three times, and i am going to check out that course for sure, thank you for mentioning it. Also thank you for recommending my channel its so sweet of you to mention me , its real humbling for me, so thank you :) i am going to link your channel in my description. I am also thinking of doing my favourite autism channels video, which u will be in.
Thank you for sharing this fantastic overview. I'll look into the course! And yay you, the beard looks great 🧔♂️
Thank you!
Thank you for all your videos, I've watched them all up to this point - I've been searching for someone similar to me, who can explain this new territory to me.
Thanks for the recommendation, I've just started the Kent course based on it.
Cheapest counsellor ever haha :)
Thanks for watching - this is exactly what I was hoping the channel might become, so win! 😀
Great information! .I feel I need to sit down and listen with a note book and pen. It isn't often I give time to that but honestly you have really hit home. Great video.
Thank you - that means a lot.
What a great video! Thank you. I'm going to enroll in the course, but hearing your descriptions of how the course content resonates with you is so helpful. I'm late-diagnosed and self-diagnosed - woman, age 75, and there are *no* resources for adult autistics within my state or neighboring states. So I'm doing a lot of reflection, remembering incidents throughout my life and re-framing what they mean about me and the other people involved.
I'm specifically relating a lot to the issue of having to learn socialization. I'm very direct, often have been regarded as "too blunt," or "too direct," or, even, in a particularly memorable professional workshop, "smart but so cold." I'm remembering many times in my life when I was aware that I was just "out of step" with, e.g., the group of women I worked with, or with a social group, and realizing that I needed "to study" them to understand better what I was doing within those groups. What a journey this is!
Hi Lynn - thanks for your support! Sorry to hear there aren't really any adult resources in your state. There's an American lady, I attended one of her courses online - Julie Skolnick from With Understanding Comes Calm. Some of the things you've said previously make me wonder if you might have what's now known in the US as a '2e profile' - I only ever even heard of this profile six months ago. Her website is here if you were interested and there's quite a lot of good stuff there: www.withunderstandingcomescalm.com
@amineurodivergent Thank you! I'll check out her site. I hadn't heard the term "2e profile" before, but it fits. I was identified very early as "gifted," (read early, strong language skills early) but have always struggled with certain areas of learning (math, languages), at which I'm really bad. At the same time, some aspects of socialization still elude me, and I'm very much aware that I still *study* socialization as women do it. So, yeah, twice "exceptional."
You’re looking well, better rested!
Thanks!
Written communication in real time is the worst for me, my weakest point. Reading a book or writing a briefing note or a research report is a breeze. However, real time communication is totally another story. My texts and emails constantly get misinterpreted and I constantly misinterpret other's text. This is especially pronounced with new people, but also with those I know for a long time, including close friends. Trying to get to know someone through writing only is a pure hell and so stressful. I need to be able to speak with voice and clarify on the phone and/or in person. I also need to ask many questions in order to make sure I understood everything properly. This includes my personal life and work.
That's really interesting - quite different from me but everyone's experience is slightly different and impacted by a range of things going on. Great that you have that level of self-awareness!
no person on this plant is wrong ... only people who hurt others are the wrong ones ... thanx for this interesting video. I don´t know If I mask well. I think Im in the middle 😅
What a great video and that sounds like a very worthwhile course to take. I'm in Australia, 2 years into my journey. Not sure if I can access that but I'll look into it. Congrats on your beard too. What an achievement
Thanks!
Thank you for yet another great video!
Thx u for this video 😊😊😊
Love your vlog ❤❤❤
This is such a helpful video.
Thanks - really pleased to hear that!
Thank you so much. I am in the process of going through your videos over the last few weeks.
Lat Monday I had my Autism assessment and yes of course I have been diagnosed at the age of 72. I will receive my report in approximately three weeks. The last seven years have been a struggle since my husband died .
Thanks. Great session. I am looking at the course, you said it was free….but that is only for a limited version. I will be doing the whole thing.
Awesome! Access to the whole thing used to be free for a time limited period from what I recall. 4 weeks, I think? I powered through the content in that time. For ongoing access, I think there was a sign-up fee. Has that changed? I'll look into and put a note in my next vid if yes. Many apologies if I've misled - hopefully the full course will be worth it, for me it was so valuable. Cheers for pointing this out!
It unlocks 1 week at a time, allowing for 4 total weeks of content but at this specific pace
I havent been diagnosed (was with adhd 14 years ago aged 42) l learnt so much l recognised the traits when l went to the Autism show, NEC. A lifetime of bottled up isolation & frustration. Still contemplating seekin an official diagnosis though l really do not lnow what it will ultimately achieve other than recognition??
I guess 14 years ago there was "no such thing" as co-occurring autism and ADHD according to diagnostic criteria. Now it's increasingly looking like it might be most of us that actually have both conditions co-occurring. "A lifetime of bottled up isolation & frustration" sounds about right. Cheers.
Hi l am interested in the FutureLearning course, it is free with 'limited access' & you only pay to get the certificate. I wonder if it is worth paying for that certificate?
@@Domdeone1 Hi - yeah, someone else was asking about this too. For me, I just utilised the free 'limited access' version which was pretty much the entire course and videos and links which I watched and read and took notes on. Paying for the certificate or for extended access wasn't worth it for me.
However, if you're doing it for continuous professional development, i.e. as a care worker or therapist, then I think it is worth it for the certificate as well as the ongoing access to all of the materials. For me though, the free version sufficed.
NeurodiverJENNt’s channel hasn’t been deleted - what happens is that when you search for it, UA-cam assumes you meant neurodivergent and gives you generic stuff related to that, you have to select her channel specifically at the top where it says ‘did you mean…’
Hi, thanks - no, NeurodiverJENNt is broadly fine for me, I signed up to get notifications and watched a really good AuDHD video she did just a couple of days ago. It was a channel called Trying to Unmask I think has been deleted that was a recently diagnosed English lady, maybe I'm not sure late 20s/ early 30s, she started just a few months ago and was really insightful/ calm/ relatable but her channel's just not available anymore. I remember she said she deleted her channel once before because of negative comments then re-uploaded the videos but in doing so she lost every prior comment, including the positive ones. But now her content's not there at all again, which is super sad.
@@amineurodivergent oh, I remember somebody saying that about their channel. I get people’s names mixed up.
@@amineurodivergentI noticed Kate’s channel has gone again which is a shame. I had my Aha! moment watching her. I don’t really identify with the ‘louder’ autism channels. Hope she’s okay and Maybe she’ll come back.
I wanted to throw @Charlierewilding into the mix too
@@NeurodiverJENNt Hi, I like your stuff! Yes Charlie is great as well, and Amanda on I Am Mindblind I love her too.
I thought it was seen in a scan Dr amen does scanning and scaned and diagnosed Steven Hilton , public figure.
This is really interesting to me - the course notes just said "not identifiable through blood tests or brain scans", but I remembered reading about advances in this area so went to check. The broad consensus of what i could find is that while there are potentially encouraging advances in this area (such as the one you reference above), they are not yet universally recognised or 100% scientifically proven. I didn't want to linger too long or go down a rabbit hole as there was a LOT I was trying to cram into this video, so I just inserted "yet" into what the course had said - so "not yet identifiable". A bit of a blunt statement maybe, but my current understanding is that while research has shown SOME differences in brain structure and function in SOME individuals with ASD compared to neurotypical individuals, these differences are not specific or consistent enough to be used as a diagnostic tool, and a diagnosis still requires a holistic assessment of an individual's behaviour and development. I'm super interested in the development of this area though, as things are advancing quickly. Thanks for flagging this, super helpful!
I think figuring out what's going on with the average gender differences is difficult. Allegedly, "typical autistic men" mask less, because the male gender role is closer to being authentically autistic. However, what we think of as being authentically autistic is... mostly based on these same typical autistic men. It's tautological.
If we toss that out and just look at what people are doing, it seems like we're interpreting the same behavior differently by gender. If a woman does a pretty good job at simulating the normative female gender role, that's masking. If a man does a pretty good job at simulating the normative male gender role, it isn't.
The situation is complicated further by normative male alexithymia-men are socialized to have less emotional self-awareness, less awareness of their social environment, and not to report their emotional states or many other aspects of their inner lives. If we ask men and women how much social masking they're engaged in, we're using different yardsticks. We're asking about aspects of self-awareness and personal experience that men aren't "supposed" to be aware of or to report. I don't think we know if there are gender-specific differences in masking except insofar as we know there are different targets, different social roles one masks as.
These are all really great points, thank you, and giving me lots to think about. I think I can maybe be a bit blunt in terms of gender stereotypes and just tend to repeat and perpetuate tropes that should maybe be challenged a bit more. The tautology point is really interesting, and kind of inescapable the more I think of it. It's certainly giving me pause for thought around alexithymia, which I hadn't even heard of until a few months ago and then scored very highly on, and led to another spiral of despair - (oh no, another 'thing'!). But everything you've said is 100% spot on - do you have a channel or blog or anything?
I think it’s all just a bit messy, because there appear to be differences in averages between genders and that matters (due to gender biases in research, primarily), but there’s also a lot of overlap. Language isn’t great at fuzzy distinctions.
I’m enjoying your videos. I’ve been on a pretty similar trajectory. No channel, perhaps some day.
Excellent idea only autistic politicians...🎉 They do say if it's good for autistics it's probably good for everyone... We are usually into justice and social justice...
Do you have to pay for the certificate??????
I'm not sure sorry - I guess? I didn't do it for a certificate, tbh, I just think it's pretty awesome that the resources and learning modules are out there for free. I think if you're doing the course as part of your continuous professional development as a therapist or social worker then yes, maybe you have to pay for the certificate as proof of completion, same as if you want access to the material for longer than the four weeks.
I'm really sorry if that has blindsided you - I guess I should have made that clearer, but the certificate of completion just wasn't really on my radar so it never bothered me, I just did as much of the free learning as I could. 😞I hope the course was useful and informative even without certificate??
You can do the Kent course for free. When selecting payment options there is a free option (I think you only have access for 4 weeks).
05:50 How do you know that?
I don't think we 'know-know', it's more that the previous assumption men were 'more prone' to autism than women has now been discounted and seen that there was a definite confirmation bias towards diagnosing more boys and men than girls and women. Statistics will take time to level out and change (and as a counterpoint to existing biases, in my neurodiversity network at work, there are way more women than men), but the re-set starting assumption (to me - happy for others to disagree) HAS to be, given mounting evidence to the contrary, that autism doesn't gender discriminate, just manifests itself differently.
@@amineurodivergent"I don't think (...) girls and women."
Well, as I can gather it's not discounted (certainly not disproven) as much as it's contested, scrutinised, questioned, debated, challenged, doubted... I haven't seen any convincing evidence that males are NOT "more prone" to it.
In any case, I still think care must be taken not to end up with a different and perhaps bigger problem. It might be that there actually are a sex difference (or overdiagnosis among males) rather than underdiagnosis among females.
Why is breast cancer so much more prevalent among females than males? (Lifetime risk 12,9 % vs. 0,13 % (>99 times higher risk for females) among those born in America today.) Probably due to differences in lifespan, hormone levels and amount of breast tissue. Not overdiagnosis among females or underdiagnosis among males.
Another facet I'd like to mention: If autism "manifests itself differently" to such a degree as some have stated (e. g. four times as many males as females diagnosed in spite of an assumption of no sex difference), perhaps it would be more correct to speak about different disorders with different symptoms (that ought to lead to different diagnoses, e. g. male/female autism).This seeing as the point of diagnosis is (as far as I kow) to recognise the cause(s), estimate prognosis and find the best (if any) available treatment, cure, accommodation and prevention. Not some kind of ridiculous attempt to downplay differences between the sexes.
But they are saying 1in 100 autistics that's way out Pete wharmbys book said he has read from 1 in 60 to 1 in 32 ...1 in 100 is out dated already
I 100% agree the real figure is likely way higher than that - but 1 in 100, to the best of my knowledge, is still the broadly accepted figure you see used and referred to across multiple platforms. 1 in 100 autistic, 1 in 7 more broadly neurodivergent. I'd be delighted to see that figure change and tick upwards and, to be fair, the Understanding Autism course was first put out almost 5 years ago so things do move on super fast! Thanks. EDIT: ah, I've just done a bit of googling - US figures (where kids are diagnosed more) have been upwardly amended to a 1 in 36-54 estimate, UK figures (where diagnosis is less common) are still around 1 in 100 (but moving in a more positive direction now). I'll amend that when i next refer to it - thanks again!
I'm in Australia and herw we are running a charity run for 70 k
To represent their figure 1 in 70 autistic
@@kayjay-kreations Really interesting - so Australia's somewhere in between the US and UK estimates. It's such a postcode lottery! I wonder what the estimates will look like in 10 years or 25 years time - hopefully a) higher and b) more consistent across the piece. A therapist I used to go to (jokingly) said it's as high as 1 in 2, it's what they've always wrongly just referred to introverts and extroverts. I'm not sure I'm on board with simplifying it that much but it was an interesting take!
I am surrounded by people with autism, diagnosed and undiagnosed. I joke that I am an autism magnet. To me it feels like it’s 1 in 10!
I love your beard but I am a beard girl 😅