Stephanie and Ido -- thank you both so much for this interview. I am an autistic mom of two (potentially three -- my 19-month-old is too young to be diagnosed but she's missed some milestones already) autistic kids. But my oldest is the only one who is non-speaking. He sings and repeats incomprehensible phrases to himself all the time but he doesn't use speech to communicate. He has a device he uses to communicate his basic wants and needs (an iPad with a special program on it). But a lot of what Ido has said confirms my long-held suspicion that he's a very intelligent boy who understands what's going on around him very well. I am frustrated with his school -- they keep sending me videos of him, for example, lining the numbers from 1 to 20 up in a row and expecting me to be impressed when I'm thinking, "WHY are they still doing this with him at age 9? He's known how to count to 20 since he was 3." But I don't know how to advocate for him. My own speaking skills tend to diminish in situations where I'm under stress or feel I have to be even mildly confrontational. But I WILL be reading your books, Ido, in order to learn more, and I WILL be sharing this video on social media.
As a nonspeaking autistic guy who uses Proloquo4Text to type out my thoughts, I would like to recommend reading Ido's book, "Ido in Autismland." My mum read it when I was 13, and immediately began to see the signs in me that showed her I had much in common with Ido. I began typing at 15, and went on to test more than 8 years above my age in educational testing (I say this to demonstrate how wrong professionals had been about my level of understanding, and academic competence). I reported that I was contending with a body and mouth which couldn't listen to my commands--and scored in the bottom 2% when an OT tested my movement abilities. With me, it was a bit difficult for people around me to recognize my gross motor challenges (they could easily see my challenges with fine motor when I tried to use scissor, etc). I learned to ride a bike, and was eventually able to downhill ski, for example. But, what wasn't recognized was that I had tremendous difficulty in initiating new movements, and in motor planning them. I need a lot more time to start, and then a lot of time to plan the action. I also contend with impulsive body movements, which are difficult to control (such as grabbing food from someone's plate--although I have pretty much gained control over this now.) This is why I sometimes appear as though I don't understand instructions--I do understand, but I need so much more processing time to start the correct physical actions. My diagnosis from the OT was "severe, whole body apraxia". Since my parents became aware of my ability to understand, and of my physical challenges, my life improved so very much! I went from working at a grade 1-2 level, or repetitive academics, to working at age level in academics (I can see you son is having the same trouble at school that I had). They began reading me age level books, and I began watching much more interesting videos, etc. I began going to museums, and engaging in educational opportunities which were so much more appropriate for someone my age. I was so relieved when I was spoken to and thought of as someone who understood the world (because I did!). Please hold on to your long-held belief that your son understands the world, and that he is presently unable to demonstrate this understanding. I don't wish to promote myself, but you might find my RU-vid video (Damon Kirsebom), "Reframing 'severe' Autism" helpful in encapsulating what I have found is common in so many nonspeaking autistic individuals. Please say a big hello to your son! Damon
@@damonkirsebom3243 Hi, Damon, and thank you for taking the time to reply to my comment. I love hearing from other people like my son (his name is Calvin) and growing in my understanding of what his life is like. I did buy both of Ido's books and I'm part way through "Ido in Autismland." It's a difficult read for me because Ido dealt with suicidal ideation at such a young age! I worry about Calvin. I don't know if this is something he struggles with or not. But it's also a very important read and I'm glad to have found Ido's books. There's one point I disagree with Ido on and I'd be curious to know if you have any thoughts on the subject: I don't think that Asperger's syndrome is different from autism. There are actually a lot of things about Ido's experience that I can relate to, only to a much lesser degree (I am level 1 autistic/have Asperger's syndrome, however you want to put it). I even know what it's like to be thought of and treated as unintelligent. I didn't have this problem in school. My teachers would wonder about me because I almost never spoke aloud in class but I had access to writing and so my written work showed them that I understood the material. I can talk but I don't have good verbal ability in many situations. My inability to contribute to group discussions or even conversations at a family dinner (situations that aren't one-on-one and where there's no writing involved) causes people to think, "SueAnne's not saying anything -- I guess there's nothing going on in her head." And then people think it's okay to overlook me, to neglect to ask for my opinion (they assume I don't even have one), or even talk to me as if I'm six. And they are often stunned when they eventually discover that I'm smart. But that's the difference -- Calvin has yet to be given the means to show people he's smart and he doesn't have access to the roundabout ways I am able to find to put myself out there. I will check out your video and I will pass along your greetings to Calvin. Thanks again for sharing your thoughts -- I am happy to have heard from you 🙂
As a late realized, masked autistic I think these conversations are extremely important and desperately needed. It's hard to have a productive conversation with a non autistic parent of a child with high support needs, for example, but in order to make substantial progress in the professional understanding of autism we need to listen to the experiences of non speaking people, from their own perspectives. Having read ido in autism land, I was surprised at how much I could relate to some experiences, and his account of everyday experiences felt like an extreme version of some of my worst days. However, there are so many massive differences that speaking self advocates rarely talk about, and I'm hoping more non speaking autistics can gain access to the means necessary to communicate
This video is so impactful. My four year old is nonverbal and I just know there’s so much going on inside he can’t tell me yet. He has just been introduced to an AAC device so I’m hopeful he will gain another way to communicate. I’ve been so frustrated with the low functioning lab too. It’s not more autistic or less autistic rather different impairments that all cover the umbrella of autism. My son definitely struggles with motor processing but is so good at picking up body language, connecting concepts (knowing water is in rain, bath and a glass) and he knows his alphabet, colors, numbers. I know because every once in a while he can make an approximation of the word he tries to say. The experts give me a sympathetic smile like they don’t truly believe me, but momma knows!
Great interview! I work at a library and I will definitely be looking into the memoir and the fiction book to add to our collection. Thank you, Ido and Stephanie!
Ido's first book, Ido In Autismland, saved my son's life--that's how he describes it. I read it, and found the same way for my son to spell out his thoughts. He then learned to type on an iPad, and keyboard. Life completely improved, and we began to understand so much of what we had completely misunderstood. Ido's experiences are similar to so many nonspeakers. His work is fantastic.
Very interesting interview with some great points. It must be very difficult to be trapped in your body while understanding everything. And nobody knowing that. Thanks Ido.
Content like this is so helpful. This year I just got into the topic of non-speaking people and the freedom communication gives, and I've made friends and learned SO MUCH!! edit: I added this video to my public playlist "Feminist Discussion & Social Commentary"
Gold nuggets, thank you Ido and Stephanie! Ido describing his condition more precisely as global motor apraxia makes me wonder: If the broad autism umbrella community could gather in an accessible communication space, how would autistic people ourselves define the types of challenges we face? The previous categories (Asperger’s, Rhet’s, PDD-NOS, autistic disorder, etc.) seem to be fairly outside-in definitions from what I understand. Would it be better to have autism “types”, similar to how schizoaffective disorder can be depressive, bipolar, or mixed type? Or completely separate diagnoses? Might research on autism improve by defining/diagnosing the different neurological impacts more precisely, and where research on that stand today? All questions open for discussion. Thanks for the content!
Again such a powerful interaction between humans. It is so refreshing having non-verbal autistic persons representing themselves. I foolishly believed that lumping all autism in the same basket would make people realise that non-verbal person are just as capable of thought as any other persons, just as valuable and worth understanding than any other human being, and that the problem wasn't them but the way we treat them, the absolute lack of trying to understand. I am thankful to be privy to these valuable insights. I completely agree about the differents neurological causes being lump together according to visible symptoms. You said it way better than I ever could. Best wishes to all
Everyone is talking about the "speaking autism" or what was considered as Asperger's back then.. people go really quiet when I talk about my brother who is nonverbal and I even feel like I'm walking on eggshells when I talk about my childhood. We are 1 year apart and we did fight over TV remote and food and people look at me like I'm evil despite us being under the age of 10 when I describe these memories.. I honestly was mean sometimes, not gonna lie.. I worked in a special needs school and I tell stories, sometimes the kids do things kids do...those kids like to test the substitute's (me) boundaries like other kids. At least half the kids made really good eye contact despite not speaking. Me telling a funny story from work? I get weird looks. They don't know how to react when I talk about THAT type of autism. Even one person I met that was diagnosed at age 30 did not know anything about this side of autism. I was diagnosed at age 10..
Hi do you have any advice/tips on how I (diagnosed with ASD level 1 & ADHD) can go about contacting non-verbal individuals and/or their families? I am involved in my city's local autistic population and am somewhat known; however, I have refrained from venturing down this path out of the fear that I will offend or unintentionally insult these people or their families. I think the project you're doing is not only extremely kind, but immeasurably invaluable when it comes to understanding other parts of the spectrum. Autism research will *never* tell the full picture until we get the voices of these people heard and their input incorporated into the research. One of the common themes I see when I hear the stories of these non-verbal autistic folk is that prior to any successful implementation of AAC in their lives, the intelligence "trapped" inside of these individuals can be astonishing. I have yet to hear a story of one of these "low-functioning" individuals which didn't include a demonstration of some sort of remarkable gift or talent. The hypothetical "high-functioning" individual he describes around 5:20 is a fairly apt description of where I stand, so I imagine an opportunity to speak to someone like Ido could prove incredibly enlightening. I have no project or plans to involve these people beyond my own personal education (and perhaps, if I can keep my spoons in order, provide another autistic individual with a sympathetic ear). I can certainly sympathize with his assertion that perhaps his condition ought to be more diagnostically-distinguishable from someone like mine (I think Temple Grandin put it best when she said something along the lines of 'do you really want to tell a parent whose child is suffering from uncontrollable and unpredictable seizures that they have the *exact same* condition as Elon Musk?'); but even just based on this 20 minute introduction to this man, I hope he realizes that his story and struggles inspire those of us who are perceived as "higher functioning." Dude is unironically a badass and whatever deficits he certainly has, his proficiencies--much of which he fostered on his own accord--more than make up for it.
💛💛 Online, there are some groups (I'm thinking mostly Facebook) that are made to ask non-speakers. If you're wanting to hear from local non-speakers, you may have to start by reaching out in local autism groups and parents. I-ASC may know of spellers in your area, but I'm not sure how appropriate it is to ask or whatnot (some of my ideas need to be more vetted on what is socially appropriate and respectful of others privacy and time 😅) I'm really happy to hear about your involvement and willingness to listen more!
While each autistic varies more from the assigned norm box than we do from allistics, this interview highlights an unaddressed area of autism. I was nonverbal with many motor issues, now mostly disguised, but still there to exhaust and derail me yet denied by all allistics. My talk is enough only to enrage and entitle to denigrate me as deliberately failing to be clear. All i ever gain is more fearhate exclusionassault.... Last week, i learned how 1970 computer concept of "uncanny valley" also relates to autistics or any perceived difference, increasing fearhate as the difference from nomal shrinks.
Interesting. What assurances do you have that Mister Kedar was not being subjected to pseudoscience such as "facilitated communication" when he made his answers? Bluntly put, I suspect he was subjected to "facilitated communication," and the facilitator answered the questions (and wrote the book). There are many score examples of this being done to autistic people, with and without the knowledge that it is the facilitator conversing; the stories are even the same, such as "being trapped in my body" while understanding words etc. I was diagnosed autistic when I was 58 years old, with developmental delays including talking. This is why I "speak up" when I suspect an autistic person is being exploited in a sinister (and usually venal) ways.
Hi we’ll if you do some research you will see that Ido independently types all his words on an iPad - no FC - I have two spellers in my family I can assure you there is no FC when it comes to their communication
@Desertphile What assurances do we have that you are not an A.I.? - Being questioned as a person over and over again just because you're non-speaking yourself and (presumably) speaking people can't imagine or don't want that you can still write, that you can still understand, frustrates to the max. Like Ido Kedar, I was diagnosed as a toddler, and like him, I received these questionable "therapies", and like his protagonist, I didn't really* start communicating with other people until I was 16. In writing when this was finally allowed. *Really - in the evaluation of speakers who received reasonable sentences from me. As Ido noted, not speaking does not mean not thinking. Do you think the same about Naoki Higashida or Tito Mukhopadhyay? Their books are also very insightful. - It saddens me to see that after decades, some of us try to speak just to prove to people like you that we're authentic. Even then, people don't believe us, because the sparseness of the vocalizations cannot come close to what is written. - On a personal level, it saddens me even more that speaking people prefer to hear a computer voice rather than read what I'm telling them. With a computer voice, I am suddenly treated like a human being, and not really without it.
@@underdog1572 Indeed. For some, it threatens what they "think" they know, when nonspeakers access communication. (Somehow they're invested in nonspeakers having only the most basic thought processess--which is not a scientific consensus). My own son types independently, and tested 8 years above his age in educational testing. The thing is, Ido's story, and your own, is the story of so many nonspeaker. I don't know why anyone would come on here to "help" us.
