Hi River! First of all, thank you so much for replying! I can’t fully express how much joy I felt when I got the notification that you replied to my comment. It might sound silly, but I felt “seen” and that rarely happens to me. And a huge thank you for your thoughtful explanation. That really makes sense to me. I’d love to be able to find a community that would accept the real me. It’s hard to try again after so many bad experiences, but seriously, this podcast is so supportive and affirming. Thank you!
Don’t give up! We are a minority but not as small of a minority as most people think. And while you will need to deal with allistic society, what I have found is spending more and more time with Autistic people (whether they know they are Autistic or not) makes communication so much easier. It doesn’t mean I get along with every Autistic person, but at least it doesn’t feel like I’m on the wrong planet or stuck in an Emperor’s New Clothes loop. Glad you found us. Give yourself time and grace, more will be revealed!!!
What is happening??? Angela Lauria read my post and replied! I love you and Matt! Not in a weird way, but in a very grateful for all that you do by doing the podcast way. It really does mean a lot to me!
Everyone working on this show really values the community we are creating here because like you we all have a lot of trauma from trying and failing so many times before. We appreciate you listening and commenting and we are so glad you like it. We are recording tomorrow. Sneak peak: the new episodes we are recording are on Lessons in Chemistry, Magic the Gathering, and The Good Place! Recording days are absolutely exhausting but so much fun to infodump on our favorite topics!
I had the same thought. When Angela responded to me, I screeched at work and feel like I flailed like Kermit, though it probably wasn't quite that intense because was at work and I've learned that's not acceptable but in my head I definitely was. But I definitely screeched and my officemate gave me a very very confused look. I am so happy they are creating a space for people to create a community where we can celebrate who we are.
Amazing insights! If you want to upgrade to paid status our next “ask us anything” call is March 20th and this would be a great topic! Far too much to answer in a comment. I believe on Matt’s website you can also pay for a professional consultation where he can walk you through some of these questions and give you his professional opinion! Glad you are enjoying the show!
Thanks for the info. I have watched the demystifying the Autism Spectrum series Matt put in with Maize. I kinda stalked him for the info. It has changed so much for me. I will look into his consultation. I signed up for a membership! I think neurodiversity is also my hyoerfocus. But so also thing all forms of social work are too. I work in an HIV clinic and used a lot of the info from Matt to do a neurodiverse affirming in-service presentation (I gave lots of credit) because most of our patients are neurodiverse (LGBTQIA+). I also used Dr. Mel Houser’s All Brains Belong framework to help the doctors in my clinic look for co-occurring diagnoses and we are working on making sensory-friendly health examination environments. I’m passionate about this too. I’m just so excited to learn from you both.
Took me quite some time to figure out how to comment, but I really needed to share that this episode was profoundly helpful and validating to hear. I so greatly appreciate this podcast and the work you both put in to destigmatizing and depathologizing what should be utterly neutral and mundane experiences. Y’all started your podcast really close to the same time I was clinically assessed as autistic and it has helped me feel grounded and understood in a way I struggle to find (which I know y’all are familiar).
Thank you for putting this podcast into the world.
Thanks for figuring out how to comment! It can be a little confusing but you did it! We are so glad you are getting value and hopefully joy from listening and learning more about who we are! We see you!! ❤️❤️❤️
Angela - I also love your input and insights. I did not mean to give all the love to Matt! Seriously you both are amazing and I share your podcast with everyone I can!
You both inspire me to live as authentically neurodiverse as I can.
Just discovered this podcast, and thanks so much for providing accurate transcripts! I really enjoyed reading your description of AuCT. I'm an autistic therapist and use the same components in my work, too! I tend to refer to the meat suit maintenance as "care and feeding of the primate" and "maintaining/enriching its enclosure." There's a whole art therapy exercise you can do where you draw or list the things your primate needs to be content and to thrive.
Looking forward to reading through the rest of the episodes.
Hi Sue! Sami here, the Content Manager for The Autistic Culture Podcast, and I love this metaphor! I might be trying that art therapy exercise for myself. Thanks for listening and we're so happy to have you here in Autistica!
What a great episode <3 Made me consider a bunch of things my 100% autistic household can do to be (even) more affirming and work on at home.
Quick question--Angela, what was the protein shake you found that you liked? Asking for a friend (actually not me!!) who loves the idea of low executive function meals but has yet to find one that they find tasty...
It's by FairLife but there are a bunch by FairLife and it's super specific and the ONLY one I like - I tried every single flavor and version!!! I think I spent $1000 on protein shakes I threw out...
It's called Core Power Fairlife 26g Protein Milk Shakes, Liquid Ready To Drink for Workout Recovery, Chocolate, 14 Fl Oz Bottle
Here's an amazon link though you can find it literally everywhere
I'm studying a Master's in Creative Arts Therapy and in the current unit we looked at neurodiverse affirming practice and I shared this episode with the facilitator. She loved it and was going to share it with the rest of the college!
Thanks so much for having this episode waiting for me right now. I'm currently looking for a therapist and I think I may have found one. I found them on a list by a neuro affirming organisation run by ND people. Yesterday I had a voice call with them and I think I can work with them. The first online session is next week. I'll review how it's going each week and not commit to a fixed number of meetings. If it's not working I'll stop and look for another. Matt's model of AuCT is just so helpful in assessing if the therapist measures up. ❤️
I talk to my therapist about a lot of the content in the different episodes, but this one has been the subject of a few sessions. At one point Matt says, “we have to reframe all of these danger cues from an autistic perspective because you may still be experiencing these danger cues and ignoring them every day.” This feels important to me as I try to process my own past trauma, but I can’t quite wrap my head around it. Is it possible to expand on this further in a future episode? I am so thankful for all that you do to make this podcast available. Hearing your voices makes me feel less alone.
Hi! I'm TACP's content manager and wanted to put in my two cents: To me, this means that we need to undo the gaslighting that happened to us around our traumas (i.e. "It's not that bright! Stop being difficult!" "You could do that chore yesterday--stop being lazy/a liar!" "You don't look at me when I'm talking to you--you don't really care about me at all!", etc), so that we can better care for ourselves and heal. We need to reframe the danger cues we experience as valid and reasonable--not "just your anxiety talking." So, for example, many of us have a great deal of social anxiety, but it's often not due to a chemical imbalance--it's accurately based on our lived experience. Like, some therapists might tell autistics to ignore danger cues around social events and insist that our fear of rejection is "all in your head," when in reality, it is the very real result of being chronically excluded and misunderstood because of our cultural differences as autistics, and instead, we need to be guided to connect with a community that will accept us for our authentic selves, where we really can let our guard down and not feel so anxious (because we actually are emotionally safe in those groups/communities). Instructing us to let our guard down around people who routinely belittle/dismiss us, isn't therapeutic--it's setting us up for more trauma. Likewise, therapists might encourage us to ignore danger cues and engage in "exposure therapy" by going to the grocery store every single day to "get over it"--when what we really need is to honor our sensory differences and just wear the headphones (with our favorite podcast playing) + a hat and sunglasses + a fidget...OR just order curbside pickup and skip it all together!
I have so many questions here. I was diagnosed with ADHD this year and I am 45. It’s been a huge ride of self discovery. I see the ADHD in ALL of my dad’s family. They all make sense to me now. However they struggled with substance use and all expired early in life. My dad was 1 of 7 kids and only two remain (the two youngest). I am also passionate about neurodiversity. My two boys are autistic and have ADHD. One has a PDA profile and the other is non-speaking (I also think he has PDA). I have lots of questions about this therapy. I just passed the ASWB test and am now a Licensed Clinical Social Worker (LCSW) in California. It is my hope and dream to create a safe community space for all neurodiverse people, but especially non-speakers.
I want to employ the Autistic Centered therapy model and to be trained in it so I can help my (future) clients. I read on Matt’s website about Autistic Centered therapy and there was a big emphasis on mostly autistic therapists using the method. I have no idea if I am also autistic. I am definitely ADHD and have super masking powers so I am not totally sure if I am autistic. I’m not a routine person and in fact routines cause me major panic. I fight them and look for constant change. This makes things challenging for me as the mother of two very routine-oriented kids. My life growing up was chaotic so I think I coped by just expecting change because there was no stability. So I just looked for the changes and seemed them as much as possible so nothing could become “normal and routine” because once something was normal and routine, it would be pulled out from under me.
I cannot for the life of me tease out the difference between ADHD, Autism and Giftedness. There is so much overlap between the diagnoses that I have a hard time really recognizing where they split off. Matt, can you provide insight on this? I want to do Autism Centered Therapy but I have ADHD and I feel like I would be imposing? I don’t want to overshadow anything that is truly autistic by being an ADHD person doing the therapy.
I want to create space for parents of neurodivergent kids because in my opinion we are bullied. We’re bullied into thinking the fun things like stacking or lining up toys are “bad” ways to play and we are literally told that we can’t support that. (No matter how much we love those quirky things about our kids.) I find this even more so when it comes to the non-speakers. We have little community and what community we have is greatly divided between what modalities we use to help our kids communicate. This is due to the bullying we endure about our non-speakers and what abilities they have. Most hope we have for our kids is completely crushed once they get the “bad diagnosis.”
My son is finally learning how to type to speak but we use facilitated communication which is very looked down upon and not considered “real.” I also love Learn, Play, Thrive. That is where I heard Matt for the first time and I have been eager to hear everything he has to say about Autism since. But LPT also has limits on AAC use (alternative, augmentative communication) and they have a course on “authentic AAC.” Which is beautiful and I have read a lot about Karen Erickson, but my son can spell and read. He just needs motor support. He is brilliant. However my son’s method of communication is not considered “authentic” to Karen Erickson or ASHA.
I moved my son into a private school lead by an autistic music therapist who specializes in FC and doing music therapy to address his motor needs (she uses the Parkinson’s model as her framework).
FC has changed my son’s life in so many ways, but the community either accepts it or they don’t, and when they don’t they are nasty bullies. Why are these things so divided in the Neurotypical world? Does something like FC fit into the land of Autistica? Will it be accepted? I held off on using FC for years because of the anger so many people have against it. I knew about it when he was 3 and now he is 11 and I wasted so much time on doing it the “right way.” Which in schools is very abusive and traumatizing and my son is traumatized by PECS and Icons, he can’t use them.
- possible traumatic content coming about non-speakers, poor health care and ABA, please take care in continuing to read -
My son, along with an amazing new OT, were able to help me figure out why my son was chronically ill for years. He had tonsillitis for at least 5 years. He was sick all the time, he complained of ear aches. No one looked inside his mouth because he has sensory issues with his mouth (especially with tonsillitis) that practitioners missed this diagnosis because they do not feel comfortable or have the time to help my son feel comfortable. My OT helped me advocate for him to be put under for a full ENT work up and to remove anything blocking his airways while out. The ENT was so surprised, she said that he had the worst tonsil infection she had ever seen in her lifetime and she is THE ENT to see here in CA. She told me his tonsils were so swollen he could not breathe through his mouth and that his adenoids (which should have been dissolving and on their way out, were very swollen and infected. She told me his tonsils were so bad that they were literally rotting. This breaks my heart.
For years my son would grab his throat and try to get attention in school when he was not feeling good. Do you know how ABA responded? They wanted to teach him how to be a “good little respectful boy” and use his manners. So when he would grab his throat and try to get someone’s attention for help, they directed him to use the icon “excuse me” to replace his behavior. They thought he was trying to get attention so they thought I was “cute” that he was tapping the “excuse me” button when he did. Do you know how much that helped my son? It helped him get one of the worst cases of tonsillitis. My point is that he got the care he needed from an OT that understood his distress was coming from pain and she found many of her kids have sleep issues due to blocked airways. It was that and my son’s ability to help guide me (he has a hard time knowing pain in his body too) and we figured it out. He is so much happier.
-possible triggering content ended-
I guess I want to know if this type of therapy can be used for my non-speaker? And if so, would the practitioner be ok with using FC?
I have too much to say. So I just want to end it there. I appreciate any insight you can give. (I also know of a lot of non-speaking self advocates and have introduced them to my son, but I haven’t found a type of therapy that can help my son process this level of trauma.)
One last thing - Matt I love you keep saying “ this is the way.” I am assuming this comes from the Mandalorian? I call my son Gorgu. He is so much like Gorgu, funny, sarcastic, empathetic, caring, incredibly cute, charming and one with the force. I’m convinced he controls his environment. I love how Gorgu gets his robot suit and says “yes” and “no.” It cracks me up because that is my son. That and when Gorgu steals the other kids cookies in class.
Thank you again for this podcast. I apologize for my crazy all over the place post. I’m hoping you can follow my logic because I totally follow yours!
River, TACP's Content Manager here. First of all, neurodivergent is a fine word to use! It's just not preferred to use it IN PLACE of Autistic which you're not doing. You're honoring the full expression of your children's culture and accepting their communication and social styles as valid and equal to other forms. I know you are questioning your own neurotype and I wonder if you noticed the this comment is itself culturally Autistic? ;) It's detailed, it's thoughtfully crafted, it makes references to quoting sci-fi, and your justice sensitivity is clearly on display! I'm so glad you were able to get your son to a better school and to access the medical help he needed! WOW! Schools/society are often dismissive of our authentic communication and I'm so grateful he has you in his corner! Keep up the good fight--we're with you!
Hi River! First of all, thank you so much for replying! I can’t fully express how much joy I felt when I got the notification that you replied to my comment. It might sound silly, but I felt “seen” and that rarely happens to me. And a huge thank you for your thoughtful explanation. That really makes sense to me. I’d love to be able to find a community that would accept the real me. It’s hard to try again after so many bad experiences, but seriously, this podcast is so supportive and affirming. Thank you!
Don’t give up! We are a minority but not as small of a minority as most people think. And while you will need to deal with allistic society, what I have found is spending more and more time with Autistic people (whether they know they are Autistic or not) makes communication so much easier. It doesn’t mean I get along with every Autistic person, but at least it doesn’t feel like I’m on the wrong planet or stuck in an Emperor’s New Clothes loop. Glad you found us. Give yourself time and grace, more will be revealed!!!
What is happening??? Angela Lauria read my post and replied! I love you and Matt! Not in a weird way, but in a very grateful for all that you do by doing the podcast way. It really does mean a lot to me!
Everyone working on this show really values the community we are creating here because like you we all have a lot of trauma from trying and failing so many times before. We appreciate you listening and commenting and we are so glad you like it. We are recording tomorrow. Sneak peak: the new episodes we are recording are on Lessons in Chemistry, Magic the Gathering, and The Good Place! Recording days are absolutely exhausting but so much fun to infodump on our favorite topics!
Looking forward to hearing them! Thank you so much!
I appreciate the kind words! I'm still learning Substack, but plan to get more involved! You're appreciated here in Autistica!
Thank you Matt! I’m so confused because it feels so nice to be seen and accepted in Autistica, but it also seems to good to be true.
Thank you for this safe space to be authentically me.
*too good to be true.
I had the same thought. When Angela responded to me, I screeched at work and feel like I flailed like Kermit, though it probably wasn't quite that intense because was at work and I've learned that's not acceptable but in my head I definitely was. But I definitely screeched and my officemate gave me a very very confused look. I am so happy they are creating a space for people to create a community where we can celebrate who we are.
Yay! Looking forward to meeting you March 20th if not sooner!
Amazing insights! If you want to upgrade to paid status our next “ask us anything” call is March 20th and this would be a great topic! Far too much to answer in a comment. I believe on Matt’s website you can also pay for a professional consultation where he can walk you through some of these questions and give you his professional opinion! Glad you are enjoying the show!
Thanks for the info. I have watched the demystifying the Autism Spectrum series Matt put in with Maize. I kinda stalked him for the info. It has changed so much for me. I will look into his consultation. I signed up for a membership! I think neurodiversity is also my hyoerfocus. But so also thing all forms of social work are too. I work in an HIV clinic and used a lot of the info from Matt to do a neurodiverse affirming in-service presentation (I gave lots of credit) because most of our patients are neurodiverse (LGBTQIA+). I also used Dr. Mel Houser’s All Brains Belong framework to help the doctors in my clinic look for co-occurring diagnoses and we are working on making sensory-friendly health examination environments. I’m passionate about this too. I’m just so excited to learn from you both.
Took me quite some time to figure out how to comment, but I really needed to share that this episode was profoundly helpful and validating to hear. I so greatly appreciate this podcast and the work you both put in to destigmatizing and depathologizing what should be utterly neutral and mundane experiences. Y’all started your podcast really close to the same time I was clinically assessed as autistic and it has helped me feel grounded and understood in a way I struggle to find (which I know y’all are familiar).
Thank you for putting this podcast into the world.
I really appreciate it! It's taken me some time to figure this out, too, so you're not alone!
Also, welcome to Autistica!
Thanks for figuring out how to comment! It can be a little confusing but you did it! We are so glad you are getting value and hopefully joy from listening and learning more about who we are! We see you!! ❤️❤️❤️
Angela - I also love your input and insights. I did not mean to give all the love to Matt! Seriously you both are amazing and I share your podcast with everyone I can!
You both inspire me to live as authentically neurodiverse as I can.
Just discovered this podcast, and thanks so much for providing accurate transcripts! I really enjoyed reading your description of AuCT. I'm an autistic therapist and use the same components in my work, too! I tend to refer to the meat suit maintenance as "care and feeding of the primate" and "maintaining/enriching its enclosure." There's a whole art therapy exercise you can do where you draw or list the things your primate needs to be content and to thrive.
Looking forward to reading through the rest of the episodes.
Hi Sue! Sami here, the Content Manager for The Autistic Culture Podcast, and I love this metaphor! I might be trying that art therapy exercise for myself. Thanks for listening and we're so happy to have you here in Autistica!
What a great episode <3 Made me consider a bunch of things my 100% autistic household can do to be (even) more affirming and work on at home.
Quick question--Angela, what was the protein shake you found that you liked? Asking for a friend (actually not me!!) who loves the idea of low executive function meals but has yet to find one that they find tasty...
It's by FairLife but there are a bunch by FairLife and it's super specific and the ONLY one I like - I tried every single flavor and version!!! I think I spent $1000 on protein shakes I threw out...
It's called Core Power Fairlife 26g Protein Milk Shakes, Liquid Ready To Drink for Workout Recovery, Chocolate, 14 Fl Oz Bottle
Here's an amazon link though you can find it literally everywhere
https://www.amazon.com/gp/product/B07LD2NV9X
I'm studying a Master's in Creative Arts Therapy and in the current unit we looked at neurodiverse affirming practice and I shared this episode with the facilitator. She loved it and was going to share it with the rest of the college!
That's awesome!
Love hearing that!!
Thanks so much for having this episode waiting for me right now. I'm currently looking for a therapist and I think I may have found one. I found them on a list by a neuro affirming organisation run by ND people. Yesterday I had a voice call with them and I think I can work with them. The first online session is next week. I'll review how it's going each week and not commit to a fixed number of meetings. If it's not working I'll stop and look for another. Matt's model of AuCT is just so helpful in assessing if the therapist measures up. ❤️
I appreciate that! If your therapist is interested, we'll hopefully be doing a training in a few months!
Good luck! Would you mind sharing a link to the list of therapists you talked about? I think others could use it too!
Sure, There's Amanda Besinger in Chicago at https://kindtherapyandwellness.com/who-i-am
Kade Sharp in Washington State https://www.kadesharp.com/contact
Amy Haesler in Maryland at https://www.psychologytoday.com/us/therapists/amy-haesler-timonium-md/951645
Rachel Kraus in Maryland at https://www.krauspsychotherapy.com/
and Erin Findley in California at https://www.erinfindley.com/
Thanks! It's from Thriving Autistic who are based in Ireland (where I live) but the list is worldwide including US
https://neurodivergentpractitioners.org/
There's other resources on their website too.
https://www.thrivingautistic.org/
I talk to my therapist about a lot of the content in the different episodes, but this one has been the subject of a few sessions. At one point Matt says, “we have to reframe all of these danger cues from an autistic perspective because you may still be experiencing these danger cues and ignoring them every day.” This feels important to me as I try to process my own past trauma, but I can’t quite wrap my head around it. Is it possible to expand on this further in a future episode? I am so thankful for all that you do to make this podcast available. Hearing your voices makes me feel less alone.
Hi! I'm TACP's content manager and wanted to put in my two cents: To me, this means that we need to undo the gaslighting that happened to us around our traumas (i.e. "It's not that bright! Stop being difficult!" "You could do that chore yesterday--stop being lazy/a liar!" "You don't look at me when I'm talking to you--you don't really care about me at all!", etc), so that we can better care for ourselves and heal. We need to reframe the danger cues we experience as valid and reasonable--not "just your anxiety talking." So, for example, many of us have a great deal of social anxiety, but it's often not due to a chemical imbalance--it's accurately based on our lived experience. Like, some therapists might tell autistics to ignore danger cues around social events and insist that our fear of rejection is "all in your head," when in reality, it is the very real result of being chronically excluded and misunderstood because of our cultural differences as autistics, and instead, we need to be guided to connect with a community that will accept us for our authentic selves, where we really can let our guard down and not feel so anxious (because we actually are emotionally safe in those groups/communities). Instructing us to let our guard down around people who routinely belittle/dismiss us, isn't therapeutic--it's setting us up for more trauma. Likewise, therapists might encourage us to ignore danger cues and engage in "exposure therapy" by going to the grocery store every single day to "get over it"--when what we really need is to honor our sensory differences and just wear the headphones (with our favorite podcast playing) + a hat and sunglasses + a fidget...OR just order curbside pickup and skip it all together!
I have so many questions here. I was diagnosed with ADHD this year and I am 45. It’s been a huge ride of self discovery. I see the ADHD in ALL of my dad’s family. They all make sense to me now. However they struggled with substance use and all expired early in life. My dad was 1 of 7 kids and only two remain (the two youngest). I am also passionate about neurodiversity. My two boys are autistic and have ADHD. One has a PDA profile and the other is non-speaking (I also think he has PDA). I have lots of questions about this therapy. I just passed the ASWB test and am now a Licensed Clinical Social Worker (LCSW) in California. It is my hope and dream to create a safe community space for all neurodiverse people, but especially non-speakers.
I want to employ the Autistic Centered therapy model and to be trained in it so I can help my (future) clients. I read on Matt’s website about Autistic Centered therapy and there was a big emphasis on mostly autistic therapists using the method. I have no idea if I am also autistic. I am definitely ADHD and have super masking powers so I am not totally sure if I am autistic. I’m not a routine person and in fact routines cause me major panic. I fight them and look for constant change. This makes things challenging for me as the mother of two very routine-oriented kids. My life growing up was chaotic so I think I coped by just expecting change because there was no stability. So I just looked for the changes and seemed them as much as possible so nothing could become “normal and routine” because once something was normal and routine, it would be pulled out from under me.
I cannot for the life of me tease out the difference between ADHD, Autism and Giftedness. There is so much overlap between the diagnoses that I have a hard time really recognizing where they split off. Matt, can you provide insight on this? I want to do Autism Centered Therapy but I have ADHD and I feel like I would be imposing? I don’t want to overshadow anything that is truly autistic by being an ADHD person doing the therapy.
I want to create space for parents of neurodivergent kids because in my opinion we are bullied. We’re bullied into thinking the fun things like stacking or lining up toys are “bad” ways to play and we are literally told that we can’t support that. (No matter how much we love those quirky things about our kids.) I find this even more so when it comes to the non-speakers. We have little community and what community we have is greatly divided between what modalities we use to help our kids communicate. This is due to the bullying we endure about our non-speakers and what abilities they have. Most hope we have for our kids is completely crushed once they get the “bad diagnosis.”
My son is finally learning how to type to speak but we use facilitated communication which is very looked down upon and not considered “real.” I also love Learn, Play, Thrive. That is where I heard Matt for the first time and I have been eager to hear everything he has to say about Autism since. But LPT also has limits on AAC use (alternative, augmentative communication) and they have a course on “authentic AAC.” Which is beautiful and I have read a lot about Karen Erickson, but my son can spell and read. He just needs motor support. He is brilliant. However my son’s method of communication is not considered “authentic” to Karen Erickson or ASHA.
I moved my son into a private school lead by an autistic music therapist who specializes in FC and doing music therapy to address his motor needs (she uses the Parkinson’s model as her framework).
FC has changed my son’s life in so many ways, but the community either accepts it or they don’t, and when they don’t they are nasty bullies. Why are these things so divided in the Neurotypical world? Does something like FC fit into the land of Autistica? Will it be accepted? I held off on using FC for years because of the anger so many people have against it. I knew about it when he was 3 and now he is 11 and I wasted so much time on doing it the “right way.” Which in schools is very abusive and traumatizing and my son is traumatized by PECS and Icons, he can’t use them.
- possible traumatic content coming about non-speakers, poor health care and ABA, please take care in continuing to read -
My son, along with an amazing new OT, were able to help me figure out why my son was chronically ill for years. He had tonsillitis for at least 5 years. He was sick all the time, he complained of ear aches. No one looked inside his mouth because he has sensory issues with his mouth (especially with tonsillitis) that practitioners missed this diagnosis because they do not feel comfortable or have the time to help my son feel comfortable. My OT helped me advocate for him to be put under for a full ENT work up and to remove anything blocking his airways while out. The ENT was so surprised, she said that he had the worst tonsil infection she had ever seen in her lifetime and she is THE ENT to see here in CA. She told me his tonsils were so swollen he could not breathe through his mouth and that his adenoids (which should have been dissolving and on their way out, were very swollen and infected. She told me his tonsils were so bad that they were literally rotting. This breaks my heart.
For years my son would grab his throat and try to get attention in school when he was not feeling good. Do you know how ABA responded? They wanted to teach him how to be a “good little respectful boy” and use his manners. So when he would grab his throat and try to get someone’s attention for help, they directed him to use the icon “excuse me” to replace his behavior. They thought he was trying to get attention so they thought I was “cute” that he was tapping the “excuse me” button when he did. Do you know how much that helped my son? It helped him get one of the worst cases of tonsillitis. My point is that he got the care he needed from an OT that understood his distress was coming from pain and she found many of her kids have sleep issues due to blocked airways. It was that and my son’s ability to help guide me (he has a hard time knowing pain in his body too) and we figured it out. He is so much happier.
-possible triggering content ended-
I guess I want to know if this type of therapy can be used for my non-speaker? And if so, would the practitioner be ok with using FC?
I have too much to say. So I just want to end it there. I appreciate any insight you can give. (I also know of a lot of non-speaking self advocates and have introduced them to my son, but I haven’t found a type of therapy that can help my son process this level of trauma.)
One last thing - Matt I love you keep saying “ this is the way.” I am assuming this comes from the Mandalorian? I call my son Gorgu. He is so much like Gorgu, funny, sarcastic, empathetic, caring, incredibly cute, charming and one with the force. I’m convinced he controls his environment. I love how Gorgu gets his robot suit and says “yes” and “no.” It cracks me up because that is my son. That and when Gorgu steals the other kids cookies in class.
Thank you again for this podcast. I apologize for my crazy all over the place post. I’m hoping you can follow my logic because I totally follow yours!
.
I guess I just have so many questions.
Well I just listened to the labels podcast and I apologize for using the word neurodivergent
River, TACP's Content Manager here. First of all, neurodivergent is a fine word to use! It's just not preferred to use it IN PLACE of Autistic which you're not doing. You're honoring the full expression of your children's culture and accepting their communication and social styles as valid and equal to other forms. I know you are questioning your own neurotype and I wonder if you noticed the this comment is itself culturally Autistic? ;) It's detailed, it's thoughtfully crafted, it makes references to quoting sci-fi, and your justice sensitivity is clearly on display! I'm so glad you were able to get your son to a better school and to access the medical help he needed! WOW! Schools/society are often dismissive of our authentic communication and I'm so grateful he has you in his corner! Keep up the good fight--we're with you!