Honestly I was worried when I saw the title of this one but it was a great video. I did the whole self diagnosis route prior to figuring out how to get a formal evaluation and almost all my research has been through social media (like this channel) because that is the format that allows me to absorb information and sifting through everything & checking credentials & making sure I got extensive sources was tough. Finding accurate information on certain topics has been stupidly difficult.
The Tik Tok discussions around definition of "disabilty" were troubling. One of the best definitions I heard was "under the most compelling contingency and with the most explicit instruction cannot perform the same activity as a peer"
This was great. As a clinical psychologist who does over a hundred autism evals a year, I have seen this issue with disinformation impact people first hand. People who need mental health support end up spending time and energy try to address things from an autism perspective when really they need support for depression, anxiety, complex trauma, etc.
Thank you for sharing your perspective. You are right, it is important to get the right diagnosis to get accurate help. If someone really wants an autism diagnosis, they will eventually find the lists of clinicians out there that will give it to them.
I am now subscribed to this NCSA UA-cam channel because of Cyndi Wall’s critically important light-shedding here. I don’t view TikTok or Instagram, so found this especially eye-opening and definitely concerning. Thank you Cyndi.
I was late diagnosed with autism ADHD and intellectual disability. I'm level one autism but I always wondered why people are saying it's a difference and not a deficit. I think autism is a disability and not just a difference, but I'm one that always had it hard in school and work.
Because the problems aren't coming *solely* from inside us. They're coming from a messed up society that is not designed with us in mind. By calling it a difference we're attempting to shift things so that instead of it being our fault because we dared to be biologically differently wired, that society (and our loved ones) shares _some_ of that responsibility for _fixing_ the problem. Many autistic people that I've been learning from found out they were autistic later in life because their home lives had been safe and supportive and their autistic profile was in some ways better aligned with the school setting, but once they have to start taking on additional responsibilities and having less support, or needing to mask more, things get bad and they go into autistic burnout, regression and start having more frequent and noticeable melt downs and shut downs. It's not that they weren't already autistic, or that there weren't plenty of signs. It's that people didn't know to look for them and their circumstances were much better supportive and enabled them to hobble through. The other issue is that many autistics have additional issues, dyslexia, alexithymia, cerebral palsy, dyspraxia and so on. I can't make myself watch this video just from the premise of the title - it suggests that they think that if you're capable in any situation of being a fully functional human, then you cannot possibly have Autism much less be disabled. I have my suspicions as to the reasons for that, but that only applies to people who either have failed to differentiate between autism and their child or loved one's other disabilities, or those who really ought to start _hearing_ what the rest of the autistic community is saying because maybe they could help their autistic loved one have a better quality of life, instead of trying to bully them into silence. Which is fucked up because some of these people they're dismissing are likely genuinely saving people's lives. I'm spiraling into a major burnout myself and just learning/realizing that I'm probably on the spectrum, and they're sure as hell saving mine. I don't know how I would navigate this without understanding what is probably happening to me, and many of the coping strategies shared are keeping my head above water.
I think that the recent fixation with re-framing disability related terms with positive implications is damaging the clinical practical usefulness of those terms... but that fixation is in response to a long running stigma that demands that disabled people explain themselves or validate their existence in some way, leading to narratives like the "autism is a superpower" cliche. Overall, a very interesting discussion. I don't want to downplay or legitimize the online hostility, but I think part of it originated from a "chicken or the egg" paradox where caregiving parents of high support needs autistic loved ones unexpectedly encountered people online who may outwardly appear hyper functional compared to their own autistic family members, yet call themselves autistic, and perceived them as non-disabled outsiders making a mockery of the struggles of their children by arbitrarily appropriating disability terminology, and wanted to shoo them away without learning more, even when many of these people were clinically diagnosed. This lead to the relatively higher functioning people forming their own communities online that developed echo chambers in which the toxic cliche of hostile "autism parents" as a supervillainous force that invalidates their struggles was free to circulate and escalate with minimal internal pushback. Nowadays neurodiversity content creators like "I'm Autistic, Now What?" are pushing back against the "evil autism mom" trope and did entire videos on it, but I don't think there was pushback early on because early- diagnosed autistic people of Level 1 and even some Level 2 who went through therapy and received services have reported getting online backlash from parents of more severely effected patients who get upset when they see people who can do things their own kids can't. In understanding some of those parents who HAVE done that, I think its worth pointing out that as the 24x7 committed caregiver of one or more family members who's requirement for resources to be provided with proper conditions is unlimited, I don't think its fair to expect them to take the time to learn about an infinite array of characteristic profiles beyond those that apply to them learning to care for their own autistic children, but those same parents also can't use their personal experience to proclaim themselves to be experts on autism in general, and then invalidate the diagnoses and challenges of anyone that doesn't resemble their own children. Even when these cases are relatively sparse it fuels the "evil autism parent" memes among online neurodiversity echo chambers. And online echo chambers occupied by relatively higher functioning people are going to be populated by people with relatively similar makeups, making messages spreading the sort of misinformation discussed in this article easy for them to take seriously, and get the toxic impression that all autistic people must be like them, but many who think that never had the chance to see that there really are people whose characteristic profile of autism, even while including slight or strong similarities to themselves, will describe people who will need extensive help with everything they do and do not do for their entire lives, and that their non-autistic caregivers merely changing their attitudes isn't going to change that. The result is large numbers of "normal" non-autistic parents and caregivers, as well as large numbers of "normal" autistic internet users who are mutually unaware of, or endorsing any of this, yet unexpectedly encountering heated nonsense from confrontational people who think they're "fighting for autism" but are invalidating the experiences of others, leaving them inclined to think "wow those (other) people seem unhinged".
What are your thoughts on the Asperger's profile of ASD? Do you think the merging of the two has caused a lot of the issues we are seeing? I don't like tuning into the more popular ASD creator videos because I agree that they are not exactly accurate and over generalize way too much (a fair number are trying to sell something...), but some of them seem to be describing a more Asperger profile presentation, in a valid fashion (usually), but get overshadowed by the inaccurate videos unfortunately.
The merging of Asperger’s and Autism has been a disaster. I fully support it being separated again. Those who would have qualified as aspergers in the DSM4 (but not autism) are the ones doing the loudest talking about autism today. It is cruel.
Thank you for this great webinar! Ive followed you on tik tok and look forward to watching more videos!
As the parent of a profoundly affected child, thank you. This webinar was definitely needed.
Honestly I was worried when I saw the title of this one but it was a great video.
I did the whole self diagnosis route prior to figuring out how to get a formal evaluation and almost all my research has been through social media (like this channel) because that is the format that allows me to absorb information and sifting through everything & checking credentials & making sure I got extensive sources was tough. Finding accurate information on certain topics has been stupidly difficult.
Thank you, glad you liked it.
The Tik Tok discussions around definition of "disabilty" were troubling. One of the best definitions I heard was "under the most compelling contingency and with the most explicit instruction cannot perform the same activity as a peer"
This was great. As a clinical psychologist who does over a hundred autism evals a year, I have seen this issue with disinformation impact people first hand. People who need mental health support end up spending time and energy try to address things from an autism perspective when really they need support for depression, anxiety, complex trauma, etc.
Thank you for sharing your perspective. You are right, it is important to get the right diagnosis to get accurate help. If someone really wants an autism diagnosis, they will eventually find the lists of clinicians out there that will give it to them.
I am now subscribed to this NCSA UA-cam channel because of Cyndi Wall’s critically important light-shedding here. I don’t view TikTok or Instagram, so found this especially eye-opening and definitely concerning. Thank you Cyndi.
Thank you for your support! 💞
So excited to see you on here doing a webinar! Thank you for taking the time and energy to put this together.
Thanks for the support! It is distressing to see this happening.
Whoever says Levels are ableist needs a reality check
I was late diagnosed with autism ADHD and intellectual disability. I'm level one autism but I always wondered why people are saying it's a difference and not a deficit. I think autism is a disability and not just a difference, but I'm one that always had it hard in school and work.
Because the problems aren't coming *solely* from inside us. They're coming from a messed up society that is not designed with us in mind. By calling it a difference we're attempting to shift things so that instead of it being our fault because we dared to be biologically differently wired, that society (and our loved ones) shares _some_ of that responsibility for _fixing_ the problem. Many autistic people that I've been learning from found out they were autistic later in life because their home lives had been safe and supportive and their autistic profile was in some ways better aligned with the school setting, but once they have to start taking on additional responsibilities and having less support, or needing to mask more, things get bad and they go into autistic burnout, regression and start having more frequent and noticeable melt downs and shut downs. It's not that they weren't already autistic, or that there weren't plenty of signs. It's that people didn't know to look for them and their circumstances were much better supportive and enabled them to hobble through. The other issue is that many autistics have additional issues, dyslexia, alexithymia, cerebral palsy, dyspraxia and so on. I can't make myself watch this video just from the premise of the title - it suggests that they think that if you're capable in any situation of being a fully functional human, then you cannot possibly have Autism much less be disabled. I have my suspicions as to the reasons for that, but that only applies to people who either have failed to differentiate between autism and their child or loved one's other disabilities, or those who really ought to start _hearing_ what the rest of the autistic community is saying because maybe they could help their autistic loved one have a better quality of life, instead of trying to bully them into silence. Which is fucked up because some of these people they're dismissing are likely genuinely saving people's lives. I'm spiraling into a major burnout myself and just learning/realizing that I'm probably on the spectrum, and they're sure as hell saving mine. I don't know how I would navigate this without understanding what is probably happening to me, and many of the coping strategies shared are keeping my head above water.
Speaking of misunderstood, this is a social issue. A social psychologist is exactly what we need.
I think that the recent fixation with re-framing disability related terms with positive implications is damaging the clinical practical usefulness of those terms... but that fixation is in response to a long running stigma that demands that disabled people explain themselves or validate their existence in some way, leading to narratives like the "autism is a superpower" cliche.
Overall, a very interesting discussion. I don't want to downplay or legitimize the online hostility, but I think part of it originated from a "chicken or the egg" paradox where caregiving parents of high support needs autistic loved ones unexpectedly encountered people online who may outwardly appear hyper functional compared to their own autistic family members, yet call themselves autistic, and perceived them as non-disabled outsiders making a mockery of the struggles of their children by arbitrarily appropriating disability terminology, and wanted to shoo them away without learning more, even when many of these people were clinically diagnosed.
This lead to the relatively higher functioning people forming their own communities online that developed echo chambers in which the toxic cliche of hostile "autism parents" as a supervillainous force that invalidates their struggles was free to circulate and escalate with minimal internal pushback. Nowadays neurodiversity content creators like "I'm Autistic, Now What?" are pushing back against the "evil autism mom" trope and did entire videos on it, but I don't think there was pushback early on because early- diagnosed autistic people of Level 1 and even some Level 2 who went through therapy and received services have reported getting online backlash from parents of more severely effected patients who get upset when they see people who can do things their own kids can't.
In understanding some of those parents who HAVE done that, I think its worth pointing out that as the 24x7 committed caregiver of one or more family members who's requirement for resources to be provided with proper conditions is unlimited, I don't think its fair to expect them to take the time to learn about an infinite array of characteristic profiles beyond those that apply to them learning to care for their own autistic children, but those same parents also can't use their personal experience to proclaim themselves to be experts on autism in general, and then invalidate the diagnoses and challenges of anyone that doesn't resemble their own children. Even when these cases are relatively sparse it fuels the "evil autism parent" memes among online neurodiversity echo chambers.
And online echo chambers occupied by relatively higher functioning people are going to be populated by people with relatively similar makeups, making messages spreading the sort of misinformation discussed in this article easy for them to take seriously, and get the toxic impression that all autistic people must be like them, but many who think that never had the chance to see that there really are people whose characteristic profile of autism, even while including slight or strong similarities to themselves, will describe people who will need extensive help with everything they do and do not do for their entire lives, and that their non-autistic caregivers merely changing their attitudes isn't going to change that.
The result is large numbers of "normal" non-autistic parents and caregivers, as well as large numbers of "normal" autistic internet users who are mutually unaware of, or endorsing any of this, yet unexpectedly encountering heated nonsense from confrontational people who think they're "fighting for autism" but are invalidating the experiences of others, leaving them inclined to think "wow those (other) people seem unhinged".
I'm tired of every personality quirk being seen as practically Level 1. Thank you for this.
They also need to realize accomodations are a two way street. Sometimes they need to accommodate to others
Thankyou! The neurodiversity movement must be stopped.
What are your thoughts on the Asperger's profile of ASD? Do you think the merging of the two has caused a lot of the issues we are seeing? I don't like tuning into the more popular ASD creator videos because I agree that they are not exactly accurate and over generalize way too much (a fair number are trying to sell something...), but some of them seem to be describing a more Asperger profile presentation, in a valid fashion (usually), but get overshadowed by the inaccurate videos unfortunately.
The merging of Asperger’s and Autism has been a disaster. I fully support it being separated again. Those who would have qualified as aspergers in the DSM4 (but not autism) are the ones doing the loudest talking about autism today. It is cruel.
Off topic but what is the song at 40.30? The violin tune.