First - Winter is a fricken badass! I super appreciate their advocacy and speaking the truth (i.e. NOT being a coward). Appreciate everyone's advocacy in this episode!
Not sure if you were serious about hearing listeners' advocacy but if so I can tell you a bit about mine. During grad school (Cellular Molecular and Microbial Biology, at University of Montana), I experienced sexual harassment and discrimination (as well as racial and class discrimination but the burden of proof in Title IX cases in university systems is higher than in civil court and therefore incredibly hard to prove). I had to switch labs and start my research work from scratch on an entirely different project and I had to find a lab willing to 'take a problem student', ie one that wouldn't accept abusive treatment. Was told if I couldn't be nice and understanding to people being racist and ableist towards me I should rethink being in the program. In the new lab, I experienced intense ableism - was told if I couldn't be in science without accommodations then I shouldn't be a scientist. During these 3 and a half years (that should have been 2 for a master's) I developed more chronic illnesses - got super sick, lost 85lbs, and was in continuous pain. People, including friends who dropped me because of this, couldn't understand why I couldn't just 'get over' being treated like trash and continually arguing with my advisor to have agency over my thesis (eg using my own words and not my advisors', applying an anticolonial lens - amounting to one sentence - that I fought for months to include).
(for those not familiar with graduate school - grad students are legally classified as 'students', not employees - even though we do tons of work for universities such as teaching, researching, administration, writing, etc. Therefore we have no labor protections and are not entitled to a safe work environment free of harm, discrimination, racism, harassment, etc. Because we are legally considered students, the university does not have to accept disabled students' accommodations, essentially making it okay to discriminate against disabled students like myself, or enforce federal or state minimum wage, there are lots more examples of universities using this loophole to essentially exploit graduate students' labor. Tenured professors are damn near impossible to fire. The professor who sexually harassed me - during the year-long TIX investigation - was found to have harassed and discriminated against a total of 4 female graduate students who worked directly under him for over a decade, 2 of which were women of color coming form marginalized backgrounds - myself included. All the backlash he received was a temporary letter in his file stating the TIX finding of sexual harassment - only to be in his file for 2 years so it's already gone - blank slate for him and years of stress and nervous (and GI) system inflammation for me.)
No longer having the energy to lie, I answered honestly when people asked how I was at work and school. I stopped caring how I came off or sounded. (later realized I lost the ability to mask as well after developing new -and painful- chronic illnesses) I started talking with other grad students about our pay and their bad graduate experiences (and telling them mine) and found people interested in unionizing graduate students on campus. I worked past a ton of social anxiety to have lots of one-on-one conversations with grad students I had never met before. It was extremely hard but it was also amazing to no longer have to do small talk. We got right to the nitty gritty labor and academic issues we dealt with on campus. After 2 years of emails, one-on-one meetings, and events, we were making a mission statement for our burgeoning 'grad student union'. Due to my experience in grad school and also my identity as a poor disabled autistic mixed-Indigenous woman, I insisted on having racial equity (as well as class and gender and disability equity) and a land acknowledgment in the mission statement. My advocacy, the direct way I spoke, and the data I provided to support my argument were all misconstrued as abrasive, argumentative, and aggressive. I ended up being forced into giving an ultimatum that the principles of equity would be included in the mission statement or I'd no longer be an organizer and didn't want to be involved in any grad student union not willing to acknowledge white supremacy and its impact on graduates. Surprisingly, I had lots of organizers coming to my defense and agreeing with and supporting my argument. It was a good experience for me because for once I had people in my community who understood where I was coming from and believed in me, and the principles I was standing on, enough to loudly support me and help facilitate the conversation and find a resolution. An incredible first. I wouldn't have found those people if I hadn't been vulnerable and unmasked and done advocacy work. It's been 3 and a half years now and we have officially unionized and are gearing up for the bargaining process and contract negotiation. I'm excited to step down as an organizer - I've graduated but still work on campus as a researcher/lab manager - and see the tangible things this wonderful union/community I helped create is going to do to improve student's lives.
I'm proud to have turned a horrible experience into community-building (and union-building) that will hopefully forever change the graduate experience at the University of Montana for the better (especially for marginalized folx like me). Plus I made lots of new friends that appreciate the real unmasked me and that are awesome people willing to put work and time into things they might not benefit from but that improve the world - even if just a bit. Supremely fulfilling work, but super hard and constantly fighting burnout.
(Apologies for the length - wasn't sure how much context to give and how to accurately summarize everything. Also love the podcast and relisten to episodes constantly - my NT partner listens as well :))
I have a million thoughts on this topic! Quick Background on me: I am self diagnosed (with my autistic therapists' endorsement-I live in a highly toxic environment for nuerodiverse populaitons) and mother to 3 autistic children, spouse to AuDHD husband etc. it's been a journey the last couple of years. I found Matt when I was seeking a strengths based diagnosis for my son when I couldn't find any neurodiversity affirming practices based in Florida...go figure. I am also in my first year of practicing as an SLP in the schools in South Florida. Almost 40% of my caseload is made up of Autistic kids (which I am not allowed to say at work, they are "children with autism" or "children with ASD" of course), it would be more if the "high" functioning/gifted students were identified properly. I am fervently against ABA, both proper and other. The best outcomes that I have seen are the situations where the RBT is essentially a family Nanny who has built rapport with the child/family and isn't causing direct harm herself.
There is a monumental battle to fight here. It is a fight I am researching heartily and hopefully something I have learned will be of use.
-Something critical that we have to acknowledge in our fight is that Autistic brains crave truth and comprehensive overhaul to treat social disease. Neurotypical brains do not. There is an episode of Stranger Things that exemplifies this concept perfectly (It's Season 2 Episode 5, 40:47). Nancy wants to know if the actual tape recorded evidence is incriminating enough to bring down Hawkins Lab. And Murray's answer is everything. He tells her that he believes her but that doesn't matter, she needs the common people, the world at large to believe her. He explains that most people are not like them, they don't spend their lives trying to peel back the curtain-they like the curtain, they want the curtain. The curtain is stability, protection. So, in a cross neurotype argument, we have to be cautious in how much paradigm shifting we demand if the ends we seek are as urgent as our children or these decision makers will just not be able to see/hear us. So, I would recommend:
-Remembering that all government agencies/corporations are liability phobic. What risks of liability exposure are attached to funding ABA in the schools? What problems/concerns may already be occurring in schools in Kentucky now? Are there legal precedents in other counties/states that have pushed to remove ABA from the schools? I know we have counties here in Florida that are doing just that. Here in South Florida, Medicaid Fraud is rampant among RBTs as well. What about credentials and evidence based practices? The hierarchy of Applied Behavioral Analysis that I have seen is highly variable. It mirrors a pyramid scheme. Our RBTs tend to be monolingual (Spanish only) speakers here and they take a 40 hour DCF course, have a background check, and boom they are the actual face that will be with the child for 30-40 hours weekly. Who will write the plans of care? Will they be written in accordance with state educational/curriculum standards? The state does not seek to make autistic children indistinguishable from neurotypical children, they expect therapists to bridge gaps and allow the student to freely access the full benefits of their academic and social curriculum.
So, do the ABA practices align with IDEA (Individuals with Disabilities in Education Act) standards for FAPE? Will the behavior team work toward truly increasing access to FAPE (Free and Appropriate Access to Education) for the students. How does the constant intervention/presence of the ABA therapist relate to LRE (Least Restrictive Environment) that protects the students' rights to inclusion in the general education setting as much as possible?
-I would also reach out to teachers. Where I am by and large the teachers are desperate for support. They are so acutely aware of their accountability and so critically underpaid and under supported. And YET, all of the teachers I work with find the ABA therapists to be a pain point and not a help. Because the field of ABA is all about (compensation) compliance and dependence. When a person's entire livelihood rests on the level of need that an autistic child presents with-because that child is their 40 hour a week full time job-there is no incentive to actually see that child progress. And the teachers call out imposed dependence continuously where I am. RBTs completing work for students, working with/distracting students who are not on their caseloads, and operating as spies for parents-reporting back misinformation about the teachers are all major problems with ABA in schools.
-We have to be sure not to demonize the neurotypical mothers and teachers. I know there is a complicated history, but I blame the medical/theraputic establishment first. Parents are handed the most grim, misinformed, toxic information at the time of diagnosis. They are pushed to grieve their "lost child" and gear up for an arduous life full of regression and despair. The establishment is failing them. The world doesn't understand their children -and neither do they. So when something comes along promising hope, they dive all in. I am finding that here are a few pillars that if shared with educators/parents change everything. I show them, without judgement, what happens when I chose:
----relationship based care
----playbased learning
----natural language acquisition for our Gestault Language Processors
----positive responses to stimming, mono-tropic focuses, and deep special interests
and they embrace it wholeheartedly and often express that they had no idea they were allowed to praise their child's lego building abilities or amazing memory or incredible sketches of their favorite anime characters...because they are being indoctrinated to believe that those things are symptoms of a disease that harms their child.
-Our educational system is broken. It absolutely requires deep overhaul and our Autistic children are lightning rods that identify the problems first because they are impacting by them the most deeply. But sadly, our country is not ready for this fight. Our whole system shut down during the pandemic. Our country actually faced a stand still crisis without our teachers. I was sure that would be the catalyst for change. But the curtain was pulled back too far, on too many things, so everyone put blinders on to protect them from that much truth all at once.
-Keep it simple. Isolate the argument. Use the limited scope of the capitalistic perspective to tie their hands for fear of creating liability or bad press for themselves. It is not inauthentic. It is not selling out. It is one foot in front of the other in a marathon of a war that we cannot burn out in fighting. When I wanted to have my children at home rather than a cold, sterile, yet also infectious hospital rife with cascading interventions, I was able to do so because I applied for GAP coverage with my insurance and was able to prove the the liability AND cost were lower relative to a hospital birth. They would never have seen my rationale for Natural Birth versus Medicalized Birth from a moral perspective. But cheaper? It was a no brainer.
-Bring together neurodiversity affirming therapists from different disciplines and create a course that will share the pillars of cross neurotype communciation and empower teachers-pitch it as the money saving option that uses the resources that are already in place. The one that can make them a trailblazing state. Ideally this course would introduce teachers/parents to:
-the double empathy problem, a balm to the cross neurotype judgement cycle
-spoon theory- Autistic kids are not manipulative
-sensory regulation with stimming,
-reframe special interests as the root of intrinsic motivation (to be respected/protected not with held) New skills are best taught through a "preferred" lens
-Gestalt versus Analytic Language Processing-the power of language modeling
-Scatter Plot Development-Many therapists, ABA chief among them, perpetuate this idea that Autistic children are certain to regress. I heartily disagree. In my lived experience and research, Autistic children allocate resources toward those areas of deep interest and it occurs in an ebbing and flowing way. They may let there foot off of the gas for verbal communication when trying to master a new motor task, but when we continue to support language, they come out of the other side of the learning explosion with their language AND new motor skills. I watched all of my neices and nephews and my own children do this and have had parents I work with report it frequently as well.
First - Winter is a fricken badass! I super appreciate their advocacy and speaking the truth (i.e. NOT being a coward). Appreciate everyone's advocacy in this episode!
Not sure if you were serious about hearing listeners' advocacy but if so I can tell you a bit about mine. During grad school (Cellular Molecular and Microbial Biology, at University of Montana), I experienced sexual harassment and discrimination (as well as racial and class discrimination but the burden of proof in Title IX cases in university systems is higher than in civil court and therefore incredibly hard to prove). I had to switch labs and start my research work from scratch on an entirely different project and I had to find a lab willing to 'take a problem student', ie one that wouldn't accept abusive treatment. Was told if I couldn't be nice and understanding to people being racist and ableist towards me I should rethink being in the program. In the new lab, I experienced intense ableism - was told if I couldn't be in science without accommodations then I shouldn't be a scientist. During these 3 and a half years (that should have been 2 for a master's) I developed more chronic illnesses - got super sick, lost 85lbs, and was in continuous pain. People, including friends who dropped me because of this, couldn't understand why I couldn't just 'get over' being treated like trash and continually arguing with my advisor to have agency over my thesis (eg using my own words and not my advisors', applying an anticolonial lens - amounting to one sentence - that I fought for months to include).
(for those not familiar with graduate school - grad students are legally classified as 'students', not employees - even though we do tons of work for universities such as teaching, researching, administration, writing, etc. Therefore we have no labor protections and are not entitled to a safe work environment free of harm, discrimination, racism, harassment, etc. Because we are legally considered students, the university does not have to accept disabled students' accommodations, essentially making it okay to discriminate against disabled students like myself, or enforce federal or state minimum wage, there are lots more examples of universities using this loophole to essentially exploit graduate students' labor. Tenured professors are damn near impossible to fire. The professor who sexually harassed me - during the year-long TIX investigation - was found to have harassed and discriminated against a total of 4 female graduate students who worked directly under him for over a decade, 2 of which were women of color coming form marginalized backgrounds - myself included. All the backlash he received was a temporary letter in his file stating the TIX finding of sexual harassment - only to be in his file for 2 years so it's already gone - blank slate for him and years of stress and nervous (and GI) system inflammation for me.)
No longer having the energy to lie, I answered honestly when people asked how I was at work and school. I stopped caring how I came off or sounded. (later realized I lost the ability to mask as well after developing new -and painful- chronic illnesses) I started talking with other grad students about our pay and their bad graduate experiences (and telling them mine) and found people interested in unionizing graduate students on campus. I worked past a ton of social anxiety to have lots of one-on-one conversations with grad students I had never met before. It was extremely hard but it was also amazing to no longer have to do small talk. We got right to the nitty gritty labor and academic issues we dealt with on campus. After 2 years of emails, one-on-one meetings, and events, we were making a mission statement for our burgeoning 'grad student union'. Due to my experience in grad school and also my identity as a poor disabled autistic mixed-Indigenous woman, I insisted on having racial equity (as well as class and gender and disability equity) and a land acknowledgment in the mission statement. My advocacy, the direct way I spoke, and the data I provided to support my argument were all misconstrued as abrasive, argumentative, and aggressive. I ended up being forced into giving an ultimatum that the principles of equity would be included in the mission statement or I'd no longer be an organizer and didn't want to be involved in any grad student union not willing to acknowledge white supremacy and its impact on graduates. Surprisingly, I had lots of organizers coming to my defense and agreeing with and supporting my argument. It was a good experience for me because for once I had people in my community who understood where I was coming from and believed in me, and the principles I was standing on, enough to loudly support me and help facilitate the conversation and find a resolution. An incredible first. I wouldn't have found those people if I hadn't been vulnerable and unmasked and done advocacy work. It's been 3 and a half years now and we have officially unionized and are gearing up for the bargaining process and contract negotiation. I'm excited to step down as an organizer - I've graduated but still work on campus as a researcher/lab manager - and see the tangible things this wonderful union/community I helped create is going to do to improve student's lives.
I'm proud to have turned a horrible experience into community-building (and union-building) that will hopefully forever change the graduate experience at the University of Montana for the better (especially for marginalized folx like me). Plus I made lots of new friends that appreciate the real unmasked me and that are awesome people willing to put work and time into things they might not benefit from but that improve the world - even if just a bit. Supremely fulfilling work, but super hard and constantly fighting burnout.
(Apologies for the length - wasn't sure how much context to give and how to accurately summarize everything. Also love the podcast and relisten to episodes constantly - my NT partner listens as well :))
I have a million thoughts on this topic! Quick Background on me: I am self diagnosed (with my autistic therapists' endorsement-I live in a highly toxic environment for nuerodiverse populaitons) and mother to 3 autistic children, spouse to AuDHD husband etc. it's been a journey the last couple of years. I found Matt when I was seeking a strengths based diagnosis for my son when I couldn't find any neurodiversity affirming practices based in Florida...go figure. I am also in my first year of practicing as an SLP in the schools in South Florida. Almost 40% of my caseload is made up of Autistic kids (which I am not allowed to say at work, they are "children with autism" or "children with ASD" of course), it would be more if the "high" functioning/gifted students were identified properly. I am fervently against ABA, both proper and other. The best outcomes that I have seen are the situations where the RBT is essentially a family Nanny who has built rapport with the child/family and isn't causing direct harm herself.
There is a monumental battle to fight here. It is a fight I am researching heartily and hopefully something I have learned will be of use.
-Something critical that we have to acknowledge in our fight is that Autistic brains crave truth and comprehensive overhaul to treat social disease. Neurotypical brains do not. There is an episode of Stranger Things that exemplifies this concept perfectly (It's Season 2 Episode 5, 40:47). Nancy wants to know if the actual tape recorded evidence is incriminating enough to bring down Hawkins Lab. And Murray's answer is everything. He tells her that he believes her but that doesn't matter, she needs the common people, the world at large to believe her. He explains that most people are not like them, they don't spend their lives trying to peel back the curtain-they like the curtain, they want the curtain. The curtain is stability, protection. So, in a cross neurotype argument, we have to be cautious in how much paradigm shifting we demand if the ends we seek are as urgent as our children or these decision makers will just not be able to see/hear us. So, I would recommend:
-Remembering that all government agencies/corporations are liability phobic. What risks of liability exposure are attached to funding ABA in the schools? What problems/concerns may already be occurring in schools in Kentucky now? Are there legal precedents in other counties/states that have pushed to remove ABA from the schools? I know we have counties here in Florida that are doing just that. Here in South Florida, Medicaid Fraud is rampant among RBTs as well. What about credentials and evidence based practices? The hierarchy of Applied Behavioral Analysis that I have seen is highly variable. It mirrors a pyramid scheme. Our RBTs tend to be monolingual (Spanish only) speakers here and they take a 40 hour DCF course, have a background check, and boom they are the actual face that will be with the child for 30-40 hours weekly. Who will write the plans of care? Will they be written in accordance with state educational/curriculum standards? The state does not seek to make autistic children indistinguishable from neurotypical children, they expect therapists to bridge gaps and allow the student to freely access the full benefits of their academic and social curriculum.
So, do the ABA practices align with IDEA (Individuals with Disabilities in Education Act) standards for FAPE? Will the behavior team work toward truly increasing access to FAPE (Free and Appropriate Access to Education) for the students. How does the constant intervention/presence of the ABA therapist relate to LRE (Least Restrictive Environment) that protects the students' rights to inclusion in the general education setting as much as possible?
-I would also reach out to teachers. Where I am by and large the teachers are desperate for support. They are so acutely aware of their accountability and so critically underpaid and under supported. And YET, all of the teachers I work with find the ABA therapists to be a pain point and not a help. Because the field of ABA is all about (compensation) compliance and dependence. When a person's entire livelihood rests on the level of need that an autistic child presents with-because that child is their 40 hour a week full time job-there is no incentive to actually see that child progress. And the teachers call out imposed dependence continuously where I am. RBTs completing work for students, working with/distracting students who are not on their caseloads, and operating as spies for parents-reporting back misinformation about the teachers are all major problems with ABA in schools.
-We have to be sure not to demonize the neurotypical mothers and teachers. I know there is a complicated history, but I blame the medical/theraputic establishment first. Parents are handed the most grim, misinformed, toxic information at the time of diagnosis. They are pushed to grieve their "lost child" and gear up for an arduous life full of regression and despair. The establishment is failing them. The world doesn't understand their children -and neither do they. So when something comes along promising hope, they dive all in. I am finding that here are a few pillars that if shared with educators/parents change everything. I show them, without judgement, what happens when I chose:
----relationship based care
----playbased learning
----natural language acquisition for our Gestault Language Processors
----positive responses to stimming, mono-tropic focuses, and deep special interests
and they embrace it wholeheartedly and often express that they had no idea they were allowed to praise their child's lego building abilities or amazing memory or incredible sketches of their favorite anime characters...because they are being indoctrinated to believe that those things are symptoms of a disease that harms their child.
-Our educational system is broken. It absolutely requires deep overhaul and our Autistic children are lightning rods that identify the problems first because they are impacting by them the most deeply. But sadly, our country is not ready for this fight. Our whole system shut down during the pandemic. Our country actually faced a stand still crisis without our teachers. I was sure that would be the catalyst for change. But the curtain was pulled back too far, on too many things, so everyone put blinders on to protect them from that much truth all at once.
-Keep it simple. Isolate the argument. Use the limited scope of the capitalistic perspective to tie their hands for fear of creating liability or bad press for themselves. It is not inauthentic. It is not selling out. It is one foot in front of the other in a marathon of a war that we cannot burn out in fighting. When I wanted to have my children at home rather than a cold, sterile, yet also infectious hospital rife with cascading interventions, I was able to do so because I applied for GAP coverage with my insurance and was able to prove the the liability AND cost were lower relative to a hospital birth. They would never have seen my rationale for Natural Birth versus Medicalized Birth from a moral perspective. But cheaper? It was a no brainer.
-Bring together neurodiversity affirming therapists from different disciplines and create a course that will share the pillars of cross neurotype communciation and empower teachers-pitch it as the money saving option that uses the resources that are already in place. The one that can make them a trailblazing state. Ideally this course would introduce teachers/parents to:
-the double empathy problem, a balm to the cross neurotype judgement cycle
-spoon theory- Autistic kids are not manipulative
-sensory regulation with stimming,
-reframe special interests as the root of intrinsic motivation (to be respected/protected not with held) New skills are best taught through a "preferred" lens
-Gestalt versus Analytic Language Processing-the power of language modeling
-Scatter Plot Development-Many therapists, ABA chief among them, perpetuate this idea that Autistic children are certain to regress. I heartily disagree. In my lived experience and research, Autistic children allocate resources toward those areas of deep interest and it occurs in an ebbing and flowing way. They may let there foot off of the gas for verbal communication when trying to master a new motor task, but when we continue to support language, they come out of the other side of the learning explosion with their language AND new motor skills. I watched all of my neices and nephews and my own children do this and have had parents I work with report it frequently as well.