00:32:43 Elizabeth Graham: DSM 5 actually came out in 2013 00:39:14 Danny Schaible: Granted that the term Severe Autism doesn't even exist at this point, what is the percent of the ASD community believed to have "severe autism". Coming from the parent of a child whom I believe to have severe autism. 00:43:39 Raymond Kim: The ugly elephant in the room is the neurodiverse movement, esp the toxic self centered elements. They are shaping reshaping the picture and narrative of autism. Such that organizaitons like NCSA must come into being. 00:44:09 Katrina Davis: What Raymond said. 00:45:15 Joy Gehner: Agreed, Raymond & Katrina 00:45:20 Raymond Kim: And parents like us are shut out of getting appropriate help & support for my DSM 3-2 support level son. Besides the useless I want a overpaid baby sitting job, its impossible to find and hire aides for an ABA program for my son because of the toxic proproganda spewed by the NDs. 00:45:26 Katrina Davis: How about schmatism :) 00:45:52 Robert Titus: The Refrigerator Mother is making a comeback in the guise of "trauma" being the cause of disabilities, including autism 00:46:05 Kelly Rouse: well said Robert. 00:47:30 Deborah Bilder: Could we have benchmarks that are concrete to define the challenges so as not to confuse someone as to whether they fit that criteria. Current criteria are so nonspecific that they lend themselves to individuals reading them. relating to them, and self-diagnosing. 00:47:36 John Farrin: To what extent was the Asperger's diagnosis removed because it didn't unlock as much assistance from social services and health insurers? 00:47:46 Adrienne Benjamin: At this point, the neurodiverse crowd is certainly destructive to us and our kids. That’s part of why we’re here. Needing to focus on solutions. This proposal is a great start 00:49:06 Katrina Davis: Neurodiversity has helped our kids in many ways by raising awareness BUT it has also white washed the realities of those with severe autism and their families 00:51:20 Katrina Davis: In Seattle, parents are shamed when using severity levels. Our local Arc held a webinar titled: Unmasking the Rhetoric of Severe Autism. 00:51:43 Kelly Rouse: The differentiation of the characteristics that emerge later in childhood or middle childhood is key. "...requires constant supervision for safety...". This could also lead to improved research and resources for parents who experience prolonged grief and stress, comparable to PTSD...and REAL treatment options for their children. 00:51:57 Carole DeInnocentiis: I agree, the media portrayal of autism these days as the person who is slightly off and quirky is NOT my autism and people who are not part of the severe autism world believe what they are seeing on TV is representing how all individuals with autism present. 00:52:19 Valerie McAnnaney: our son is 31 and no one ever gave us a level. He is clearly level 3 00:53:48 Jeannette Solimine: My daughter had a hard time getting an autism diagnosis as a child because she was a girl with she contact. Now she has a hard time because she is severe and can't take care of herself or live on her own. 00:53:50 Kelly Rouse: There is not enough research differentiating OCD and ASD and their treatments (well treatment for both is limited). 00:54:05 Jeannette Solimine: How do we deal with the autistic community that is accusing us of ableism and genocide? 00:54:17 Deborah Bilder: Add schizophrenia. RDOC is well accepted to demonstrate that traits of disorders are shared across categories let alone diagnoses within categories. 00:54:25 Robert Titus: We cannot let any group, whatever their label, speak for the needs of our kids and adults, without an evidence-based response 00:55:38 Katrina Davis: Jeanette's question: How do we deal with autistic community that is accusing us of ableism and genocide? 00:56:34 Michelle McFarland-McDaniels: I have become so frustrated with the lack of services and supports for adults with autism who have comorbid challenging behaviors that I finally decided to start a program myself. I only have two options--create a program or leave the state...to go I don't know where. 00:56:56 Kelly Rouse: Who are those people influencing the changes in DSM 00:57:14 Deborah Bilder: DSM was the last one to accept new language around Intellectual Disability and remove Mental Retardation. States adopted Intellectual Disability well before DSM did. 00:58:16 Katrina Davis: Who or where should we put pressure in our own states and nationally? 00:58:33 Irene Tanzman: Is the American Academy of Child and Adolescent Psychiatry ( AACAP) and/or the American Academy of Pediatrics (AAP) on board with splitting the spectrum? 00:58:46 Deborah Bilder: Parent advocates 00:58:50 Kelly Rouse: Great question Katrina! 00:59:45 Kathleen Freeman: What do the other national autism organizations think about the distinctions NCSA is proposing? 00:59:45 Katrina Davis: functioning is fluid...gah 00:59:48 Valerie McAnnaney: So is this a political issue or a medical issue? It's easier to put pressure on you political representatives 01:01:02 Debra Rich: Everyone knows Asperger's Syndrome, I feel like profound autism also needs a specific name that people will recognize to validate it and distinguish it from AS which is obviously very different. People ask me all the time why my son is so different, why he doesn't talk, why he flaps, babbles, and taps his fidgets (kids especially), and it would be nice to tell them something besides they are autistic because everyone assumes they must be like Rain Man. One kid even told me my son is just a big baby. He isn't wrong but to have a name for what my son has would be nice so people understand that he isn't Rain Man, and he isn't just "a big baby". 01:01:12 Raymond Kim: The ND movement per the originator Dr Judy Singer is political. Her definition of her autism her mothers & doaughters claimed autism is because they are 'eccentric'. I submit they may really have a psychosis/neurosis or personality disorder. 01:02:49 Robert Titus: State ABA Associations: where are they on this? 01:02:54 Nea Hanscomb: NDs can be narcissistic 01:03:24 Rachel Weathers: Good question Robert Titus 01:04:27 Joy McDaniel: The video that was released by NCSA was amazing and perhaps taking that and making more to shared on social media as well as during commercials during high rating tv events can get "the autism no one talks about" front and center 01:04:48 Raymond Kim: To be blunt there are decent people NDs. And there are Ahole NDs. We must no longer tolerate the abuse. It is painful enough to deal with years of neglect but abuse cuts deep. 01:05:04 Robert Titus: I work for the NJ Council on Developmental Disabilities- this topic tonight must be vetted by State Centers of Excellence for DD- every state has one 01:05:08 Karla Perdomo: Joy McDaniel that’s a great idea! 01:05:13 Kathleen Freeman: Great suggestions Raymond. I shared it on my FB. 01:07:40 Kathleen Freeman: Adult housing needs may be a measurement in the future especially since it requires funding. 01:08:13 Joy McDaniel: The PA DD Council really seems to champion and live for the ND, "self diagnosed" "identify as autistic" movement. 01:08:22 Rebecca Henderson: I work in aba and I will definitely will be recommend this video to my co-workers to watch. 01:08:41 Katrina Davis: I love the video but afraid to post it for fear of being attacked by the more vitriolic self-advocates autistics in my community. They will say we are "exploiting" those featured in the video and that they did not give consent. We are co-advocates for our kids and need to share their difficult realities or they won't be heard! I could use a strong statement from NSCA to accompany the video to thwart the attacks. 01:08:41 Rebecca Henderson: *recommending 01:09:01 Deborah Hochhauser: Are you planning on using a "severe autism" diagnostic category to help address Olmstead? 01:09:32 Katrina Davis: Jill--how did you break your arm? :( 01:10:05 Katrina Davis: And what % of ASD is made up by those with severe autism? 01:11:44 Alexander MacInnis: A fundamental note: We can’t research the epidemiology of severe autism without a definition of severe autism. Right now, about the closest we have is the California DDS data. 01:12:24 Joy McDaniel: On many platforms and councils I participate in the same phrase gets repeated when it comes to severe autism "It's only a small percentage of those with a diagnosis" and it's INFURITATING 01:12:34 Raymond Kim: What if we wake up and stop the spin doctor nonsense of the ND and higher function autism types dictating autism. That they have personality disorders who have hijacked the defn of autism. At our kids cost, and harm. 01:13:15 Kelly Rouse: As a behavior analyst, there are a lot of risks we take to treat some behaviors common to severe autism- areas such as severe RRBIs, severe elopement, etc. The pressure and craze around some state licensure boards deter quality practitioners to want to go into this arena. This has to be addressed as well! 01:13:43 Alexander MacInnis: Joy McDaniel: Nobody can make that claim because there is no data because there is no definition. But there is a definition of autistic disorder (DSM-IV), and there is the Cal DDS. 01:14:05 Danny Schaible: I don't even know how I got the email inviting me to this, but I am glad I did. Someone must have heard my struggle and just did me a favor and added me to it. You guys have done amazing work and given my frustration a voice. Overdue and necessary. 01:14:56 Katrina Davis: Danny--it's like coming home, right? I have found a home--- hope and a voice with NCSA. 01:15:17 Kathleen Freeman: I asked the about other organizations because Autism Speaks is not "liked" by HF individuals because of Suzanne's Wright's testimony years ago. 01:15:30 Raymond Kim: Dr Ginny Russell of Exeter pointed out that researchers focus on the higher functioning, our kids are brushed to the side. Its a sort fo research lazyiness, a negation of the autistics who really need help. 01:16:18 Adrienne Benjamin: Yes to Danny and Katrina…finally, with NCSA we have a voice and allies!!! 01:16:43 Kathleen Freeman: Research is hard to do with severe individuals to maintain treatment integrity. 01:16:53 Danny Schaible: Thanks Katrina and Adrienne! 01:17:16 Kelly Rouse: Research is very difficult and very desperately needed Kathleen. 01:17:58 Kathleen Freeman: Kelly, I know. We need research. My comment agrees with the "laziness" comment. It is harder to do! 01:18:16 Deborah Bilder: What I mean is that SEVERE autism can be later 01:18:27 Adrienne Benjamin: I’d think the ND folks would love to Not be associated with us. 01:18:35 Valerie McAnnaney: Research almost always excludes our son because he is 'too old'. This has been happening to us since he was 9 years old!! He is 31 now - we need to include the 'older kids' 01:18:41 Mary Hurley: Do you find that other countries, specifically, UK and Ireland are providing new innovations, such as, sensory pods in schools, care homes, etc. Could we partner more.... 01:18:42 Raymond Kim: There is a danger that focusing on 'severe' pushes our kds from being negated, being brushed to the side to being pushed into custodial care - medicated, restrained & back in diapers. It is not an exaggeration. 01:18:46 Kathleen Freeman: Early intervention, early intervention, early intervention. Yes very important, but it doesn't end there! 01:18:58 Katrina Davis: As parents, where or who should we put our pressure on the state and at the national levels? Arcs? 01:18:58 Carole DeInnocentiis: So appreciative of those who are the voices for those with severe autism. It is very difficult for families and caregivers to lobby and get out there when we simply cannot leave our severe children/adults to do so. It makes it seem like we don't exist but we are home and exhausted! 01:19:06 Joan Kelley: Who is controlling the autism narrative??? Are we naive to think this is not a deliberate discrimination against Highest risk, highest cost and highest need individuals? Well funded Arc, ASAN are not ignorant yet largely control the narrative with exorbitant amounts of money. Little every trickles down to the individuals and their families but is siphoned off into agency management salaries. 01:19:23 Lee Wachtel: Kathleen, I totally agree! Services must continue lifelong for everyone 01:19:50 Katrina Davis: Yes, it's hard to advocate. We are divided an conquered because we are sole caregivers in many cases. So hard to find care givers, therapy, etc. 01:20:00 Adrienne Benjamin: Video is posted on VOR, Together for Choice too 01:20:02 Beth Meteney: The only program that my son is able to do is Participant Directed, where we use the Vendor Fiscal model and hire our own staff which consists of my husband and a previous Crisis Behavior Specialist that has agreed to work with him. This needs addressed and we can not be afraid of repercussion from established programs. My son isn't being represented because no programs will take him 01:20:14 Jeannette Solimine: Yes. That's how I found this webinar. I shared it on FB. I don't think anyone watched it. 01:20:43 Carole DeInnocentiis: http://actnowforsevereautism.com/wp-content/uploads/2021/08/Severe-Autism-vXXO.mp4?fbclid=IwAR34nb_ZQ4frxTSnvXv4W_AycQGW7jpP8gDoFE51RIghc0xkD4ZgJMIVsyk 01:20:56 Raymond Kim: Indeed Joan Kelley! And the ND 'scientists' and 'researchers' 01:20:57 Carole DeInnocentiis: That is the link for the video 01:21:58 Carole DeInnocentiis: I would hope that being labeled as severe would allow providers to bill at a higher rate and provide more supports to those individuals. 01:22:30 Alexander MacInnis: To make progress towards solutions we need to understand the problem. If there were a Severe Autism definition that would help tremendously with understanding the problem. 01:22:42 Joy McDaniel: Will there ever be a NCSA day in Washington DC where we rush our Senators and Representatives? 2022 is a big election year especially here in PA 01:23:09 Valerie McAnnaney: Agree Alexander and Joy! 01:23:24 Jeannette Solimine: I'd rather have a diagnosis for my daughter that fits than constantly struggling to explain Sophie and right the ND and actually autistic crowds. 01:23:44 Jeannette Solimine: "fight" 01:24:06 Rachel Weathers: Agree Jeannette 01:25:02 Irene Tanzman: So, what can we do to push this further? What are the next steps? 01:25:07 Kathleen Freeman: Being called a spade (in the education system) often gets you more services! 01:25:28 John Farrin: "Stigma" is a social dynamic. It's much less a concert for high-needs individuals. 01:25:45 Karla Perdomo: Is there any way we parents can push together our political Representatives and Senators? 01:25:56 Jeannette Solimine: What Sophie has is not just diversity . 01:26:26 Valerie McAnnaney: Where is that link to tell your story to your representatives 01:27:11 Raymond Kim: We need better definition better criteria for autism. A spectrum or scale leaves the door open for the articulate the cunning the polictical saavy. Those overloaded by care demands are at a disadvantage.... are basically scammed. 01:27:44 Kathleen Freeman: The "medical" designation is crucial. In NJ, community groups homes are not considered medical and therefore medical oversight is not required like in other settings (assistive living, for example.). 01:27:44 Katrina Davis: Agree Jeannette. But know that no matter, what some in the ND movement will say autism is fluid and no such thing as severe autism. Maybe stop engaging with the extreme NDers. 01:28:16 Alexander MacInnis: Imagine what would happen if it were popular to “identify” as having cancer and, based on that, argued vehemently against treating cancer? 01:29:12 Jeannette Solimine: I have. I have up trying to reach them about the severe end of the spectrum. They don't want to see it. Or maybe their autism prevents them from seeing it. 01:29:15 Raymond Kim: Indeed Alexander MacInnis! We need common sense & common decency 01:29:39 Michelle McFarland-McDaniels: Beth Meteney, I am in the same boat, and I agree with you wholeheartedly. 01:29:47 Joy McDaniel: Valerie, each elected official whether local, state or D.C. all have comment sections and Contact info on their individual websites. to find yours google "who's my representative" and you'll put in your address, it'll give you all of your list 01:30:48 Jeannette Solimine: People working with my daughter deserve hazzard pay at times. 01:31:35 Valerie McAnnaney: Thanks Joy! I did see something that appeared to be a little bit more organized 01:31:35 Joy McDaniel: I am currently in an appeals process awaiting our Fair Hearing date against Allegheny County 01:31:48 Carolyn Gombosi: Please post the slides... and THANK YOU!! 01:31:50 erin brooks: Yes! Please do this again. This is such an important discussion. Thank you all! 01:31:51 Carole DeInnocentiis: Thank you so much for advocating for our children of all ages! 01:31:55 Raymond Kim: Thank you we need to continue the discussion. Formulate ways forward. 01:31:57 Yma Campozano: Thank you 01:31:58 carol allread: Thank you 01:31:58 Katrina Davis: Thank you Lee, Jill, and Amy. That was awesome 01:32:00 Joy McDaniel: THANK YOU!!!!! 01:32:05 Alexander MacInnis: Thank you!!! 01:32:11 Karla Perdomo: Please lets do this again! Thank you! 01:32:14 Debra Rich: Thank you so much for this! 01:32:14 Katrina Davis: More please!!!! 01:32:15 Irene Tanzman: Thank you for doing this!!! 01:32:15 Valerie McAnnaney: Great discussion! Thanks 01:32:19 Tashia Heath: Thank you so much! I plan to share all of this info with my coworkers and advocates friends, family everyone! 01:32:20 Karen Stern: Thank you 01:32:23 Jeannette Solimine: Thank you! 01:32:23 Deborah Hochhauser: Thank you for your leadership and advocacy! 01:32:26 Andrea Capone: thank you!!! 01:32:27 Joy McDaniel: When is next HAPPY HOUR zoom? 01:32:27 John Farrin: Thank you! 01:32:29 Karla Perdomo: Thank you! 01:32:31 Patti Logsdon: Thanks ladies! 01:32:32 Vidas Karvelis: thank you 01:32:35 Adrienne Benjamin: Thanks to all.Good luck with your arm Jill. 01:32:41 Kathleen Freeman: Where is Gloria? 01:32:42 Katrina Davis: Yes! Woo hoo 01:32:44 Michelle McFarland-McDaniels: Thanks for EVERYTHING!