Nonverbal/Partially Nonverbal?

ShaleSelkies
ShaleSelkies Posts: 251 Member
edited December 2016 in Chit-Chat
Just out of curiosity I was just wondering if anyone else here happens to be nonverbal or primarily nonverbal? I can't speak the vast majority of the time and generally it's just exhausting or even painful for me and while this doesn't exactly affect diet and the like (outside of social aspects of fitness) it's just nice to know if I'm not the only one! :^0

Note: this is not a thread asking for advice on medical causes or similar - I already know and I'm fine this is just how I am!

Replies

  • Angela937
    Angela937 Posts: 514 Member
    I am extremely verbal if I'm comfortable. But I can get really bad social anxiety and not be able to speak at all. I have Aspergers, so I know what my issues are.
  • GreenGoddess22
    GreenGoddess22 Posts: 3,818 Member
    As in selective mutism?
  • ShaleSelkies
    ShaleSelkies Posts: 251 Member
    edited December 2016
    Selective Mutism counts too in this case yeah! That's not why I personally can't speak though if that's what you mean.
  • GreenGoddess22
    GreenGoddess22 Posts: 3,818 Member
    I used to teach special education that's why I asked. I had several students over the years with SM.
  • ShaleSelkies
    ShaleSelkies Posts: 251 Member
    edited December 2016
    I used to teach special education that's why I asked. I had several students over the years with SM.
    Aa ok, that makes sense. :^0c I hope I answered your question ok then? I'm sorry I wasn't quite sure what you meant.
    Angela937 wrote: »
    I am extremely verbal if I'm comfortable. But I can get really bad social anxiety and not be able to speak at all. I have Aspergers, so I know what my issues are.
    I'm Autistic! It's part of why I'm mostly nonverbal so same hat there I suppose. Nice to meet you! :^D
  • RunsWithBees
    RunsWithBees Posts: 1,508 Member
    kshama2001 wrote: »
    Have you ever been to silent retreats? You might really enjoy them! They are not my thing but were popular at yoga retreat center and the ashram I stayed at for a while.

    Western Massachusetts

    This doesn't specify, but my understanding is that there is very, very little discussion at vipassana retreats: https://kripalu.org/presenters-programs/insight-meditation-calmness-and-clarity

    Here's another (mostly) silent retreat: https://kripalu.org/presenters-programs/deep-rest-mind-and-body

    Upstate New York

    Joan Suval does silent retreats but as usual the website is not up to date: http://www.anandaashram.org/ProgramswithJoanSuval

    I left there 12 years ago and they still haven't managed to solve this, smh.

    I have never heard of this before, sounds interesting. I basically go out on my own "silent retreats" every time I go out for a run or a hike, though. I made up that a "perfect hike or run" is one where I don't see a single person from the beginning to the end of the trail, but it's actually extremely rare when this happens, people are just everywhere and not easy to get away from lol. Luckily I've learned to cope a lot better with my social anxiety and it's not as bad as when I was younger. My bf has had a lot to do with helping me cope as well because he's just the most shameless person I know! :# Running has also helped me cope, as it eases my anxiety a lot!
  • ShaleSelkies
    ShaleSelkies Posts: 251 Member
    My psychology teacher told me about a silent retreat she'd been to actually and it sounded really nice! I think you'd enjoy them as well. I don't know if I'd attend one myself since being, well, pretty much always in such conditions I'd feel weird being there but it was really interesting to hear what sort of effects that long a period of silence had on her being so verbal.

    Apparently it really forced her to confront her inner demons and many issues she said she never would have otherwise, and lots of the people there really struggled to remain calm throughout the whole retreat because of the same issues and I suppose it was just... interesting to me. I suppose it's probably based around the fact that their normal methods of communication have been disrupted as opposed to not being verbal for a period specifically but it makes me wonder if I'd be able to do any sort of equivalent since this society being constructed mostly verbal communication disruption just feels like the usual. :^0

    Regardless I think you'd probably really like them and they don't seem particularly hard to get into so I'd be interested to hear what you thought if you so choose to try one at any point! (and sorry I'd thought I'd replied before but I suppose I must have forgotten to actually post it!)
  • BoosDimples
    BoosDimples Posts: 2,826 Member
    I'm introverted by nature and often find verbal communication exhausting- tricky when my job role requires me to be communicative lol

    However, it seems to come in fits and spurts, mostly- non-verbal- verbal diarrhoea at times... I'm grateful for the true friends I have that don't require me to endlessly talk about anything and everything 24/7! :D
  • ezritigan
    ezritigan Posts: 1 Member
    yes! sometimes i absolutely cannot talk, sometimes it's just difficult or what i say comes out wrong (either in terms of tone, because How Do Communication, or i literally just get the words wrong/in the wrong order), and sometimes it's fine so everyone thinks i'm lying when i can't do it :P this isn't a site where i expected to see people talking about being nonverbal or autistic so i am excited! hello!
  • ShaleSelkies
    ShaleSelkies Posts: 251 Member
    edited January 2017
    ezritigan wrote: »
    yes! sometimes i absolutely cannot talk, sometimes it's just difficult or what i say comes out wrong (either in terms of tone, because How Do Communication, or i literally just get the words wrong/in the wrong order), and sometimes it's fine so everyone thinks i'm lying when i can't do it :P this isn't a site where i expected to see people talking about being nonverbal or autistic so i am excited! hello!

    Aa hello! Yeah I figured that there probably weren't many threads about this before but that's kind of why I made a one! It makes me happy to know I'm not the only person around like this and it's always nice to meet folks who maybe able to relate if there's something in relation to how this sort of thing affects my journey I'd like to talk about or just in general too! (if that makes sense) Same though re: tone and the like though even when I can be verbal it's just so hard to regulate everything at once sometimes just get one thing off and the whole sentence can get thrown off center.

    I'm introverted by nature and often find verbal communication exhausting- tricky when my job role requires me to be communicative lol

    However, it seems to come in fits and spurts, mostly- non-verbal- verbal diarrhoea at times... I'm grateful for the true friends I have that don't require me to endlessly talk about anything and everything 24/7! :D

    Uugh yeah I'm having so much trouble job searching because most list being verbal as a requirement even in stock work and stuff! It's annoying.. I can't imagine working a job which requires consistent communication with verbal folks so kudos on managing all the same!
    Yeah though I used to have more fits and spurts too but it just kind of leveled out over time to just generally being nonverbal or having limited verbality. I'm glad your friends are understanding! It's always nice to be around folks who let you communicate the way you're most comfortable with I think.
  • yayamom3
    yayamom3 Posts: 939 Member
    This thread is so interesting, and I'm learning a lot so I hope people keep commenting! OP is the fact that you are mostly nonverbal due to your autism or is it a separate condition? (Feel free not to answer if that question is too personal.) After reading the comments in this thread, I'm just so curious now and wanting to learn more.

    I have no issues with being nonverbal, but I am an introvert. @monkeefan1974 I totally relate to your desire to meet no one when you run. Anytime I go for a run or walk or to the gym, I am absolutely elated if I don't encounter anyone (which is rare, but does happen occasionally).
  • Reaverie
    Reaverie Posts: 405 Member
    Im verbal with family and on social media. Screw outsourcing! I only communicate with the outside world if I have little other choice in the matter. Im "anti-social" or "introverted".. not exactly sure. Mostly Im just unobservant. I can have someone approach me and strike up a conversation, only for me to turn and walk away without saying a word. Then my SIL calls me a B and I ask her what the heck she is talking about. Then she informs me I just walked away from some person trying to talk to me. Im like.. "Person? Talking? Who?" But by then they are gone.

    Had some guy screaming in McD's next to our table making death threats to the people over the counter one time. I never heard or saw him. My SIL was freaking out when he left and then was shocked I completely missed it. I tune strangers out. Not intentionally.. I dont "consciously" decide to ignore my surroundings.

    Same for college. I can go a whole semester without knowing who my professor is or who my lab partner is. I just go on autopilot. Ive been attending the same church now for over a year and just last week I learned who the pastor was and his name. Still no clue who his wife is.

    Imperfectly happy with this. I dont WANT to make RL friends. They expect to much from me.
  • ShaleSelkies
    ShaleSelkies Posts: 251 Member
    edited January 2017
    yayamom3 wrote: »
    This thread is so interesting, and I'm learning a lot so I hope people keep commenting! OP is the fact that you are mostly nonverbal due to your autism or is it a separate condition? (Feel free not to answer if that question is too personal.) After reading the comments in this thread, I'm just so curious now and wanting to learn more.
    It seems to be a combination of factors but being autistic's more than likely one of them yes! And feel free to ask any question's you'd like either here or over PM, I'm really happy for folks wanting to learn more and if something's too personal I can just decline!

    @Reaverie I kind of have an opposite to that actually - I can't filter sounds so I have these ear plugs which help filter a certain amount when needed. In terms of socializing I don't think there's anything wrong with socializing as or when you feel is right for you, whatever level that ends up being for you! (I'll admit though I'm having a little trouble telling how this relates to this thread specifically? If that'd be ok to ask, I assume I'm just missing something)
  • ShaleSelkies
    ShaleSelkies Posts: 251 Member
    edited January 2017
    @Louise1491
    I primarily write on my phone or my eraserboard depending on what's most practical! (for example in a classroom setting the larger writing of an eraserboard is easier for folks to see from a distance and teachers sometimes have good reasons for no phone use like their own accommodations) I also use expressions, noises, and non-sign gesture and often use this in combination with text in order to get my feelings on the situation across better or emotes with my text if I don't feel like it as much that day.

    I know some sign though having only moved here recently I am far from fluent. I would love to be able to use it more often and even at this point it's honestly so much easier for me than writing in conversation but no one else does and trying to get people to learn sign is pretty much a constant cycle of 'yeah I should really get on that' and then them never doing it. I've tried TTS and AAC apps and while I think I might try and learn to use the latter sometime the voices bother me and either a tablet or the proper devices to use it on are out of my price range. I do have a TTS app downloaded though and it's what I type on so I can use the voice function it if I need to.

    As I get to know people better I'll often start using expressions, noises, and gesture more often since they have a better idea of what I mean by them alongside fingerspelling since I sign enough regardless of if people understand that they have started to pick up such things by then (which is exactly why I do it). I have a friend who knows fingerspelling and some basic signs too so they'll translate for me if I'm just saying something simple.

    In rather formal settings I usually stick to text and a more restrained expression/gesture set since I worry that, my method of communication being foreign to them, I will be deemed 'inappropriate' if I communicate in full capacity. I don't really like communicating outside of what I have to in such settings anyway though aha so it works out ok.

    In groups I'll often write and ask someone to read it but that can get frustrating since for some reason a lot of people start reading in slow talk? Or otherwise read it weirdly or just straight up summarize what I wanted to say in a few words which is honestly just plain rude (not to mention someone has more than once gotten it very wrong). I don't get why they do it really since they could just read what I've written first and said it normally word to word as I often ask people to but if it gets too bad and I can't subtly switch 'readers' anymore I'll give up and use my text to speech app.

    I hope that makes sense/helps! Feel free to ask for clarification or any other questions you may have.
  • yayamom3
    yayamom3 Posts: 939 Member
    Hi @ShaleSelkies. Have you been mostly nonverbal your whole life? If so, can you remember what the experience was like for you before you had developed a lot of vocabulary? Is it physically not being able to form the words or is it psychological? Or something else?

    When you were in school, was an Ipad or some other tablet provided to you (because it should have been)? Are you in college now? If so, I would hope that they are making accommodations for you. May I send you a friend request? I like you!
  • ShaleSelkies
    ShaleSelkies Posts: 251 Member
    @yayamom3
    Sorry! Sometimes I think I've replied to thinks but them I actually haven't.
    I'm going to spoiler this since it's really long, I tried to summarize it as much as I could though (hopefully while remaining understandable throughout) and feel free to ask any further questions or confusions you have! Via PM if you'd prefer I sent a fr!
    I've always had difficulties with speech, it's a psychological thing, though the amount this has led to me being nonverbal or otherwise outwardly visible impediments has varied. For me it's primarily a psychological thing, though I have some throat difficulties which can certainly make things more difficult at times.

    When I was younger I'd estimate at being nonverbal around 40% of the time, speaking was exhausting over half of the rest, and I honest to goodness could not speak louder than a whisper. From when I was around that age I guess what I remember most is being shouted at a lot to speak louder, or speak, or participate better, or ar-TI-cu-late whenever I was trying to communicate with someone which clearly didn't help and just led to me isolating myself, not speaking a lot of the time even when I thought I would be able to, and spending most of my life so far doing my best to hide the fact I can't always speak. I also had a kind of 'reverse lisp' in that I had a lot if difficulty saying 'th' instead of 's' which still comes out when I'm verbal but tired or having trouble speaking.
    Generally it took me a long time to learn how to pronounce words too since I had only learnt most of them through reading and didn't (still don't honestly) understand why some differences mattered when it was just a matter of region and country how it was said being bilingual. I don't know if this is a common thing in more verbal folks too though.

    Socially, during primary school the teachers pretty outwardly labeled me as stupid, extremely shy, quiet, nonparticipating, or antisocial depending on the person and it kind of ended up in a while of being bullied on all sides. Eventually I ended up finding a few ok teachers and made friends who got used to that I wouldn't always use words to communicate and who I had a lot of fun with but it still continued in many ways until I left regardless.

    In high school I'd usually just escape to the grounds or computer lab to talk to people via text format or otherwise just quietly sit with friends I made when I wasn't able to or otherwise didn't feel like I was up for talking. They got used to it, and even outside of being nonverbal I was kind of shy so people just saw it as a part of who I was, though it was sometimes an issue since I couldn't make verbal calls in team activities in gym and got in trouble from having to pretend to not know the answer to things or being unusually quiet in presentations. This was around the time I was finally discovering my passion for writing (delayed unfortunately by primary school labeling as 'too stupid to write' and similar) and I also just spent a lot of time focused on this so being verbal was less of an issue. I just didn't need to nearly as much anymore, and in high school I'd managed to develop some good initial bonds with teachers and bullying had shifted more to other aspects of me so that wasn't as much as an issue anymore either.

    And then we get to sixth form, where going nonverbal started to have more of an impact in classes and while trying to talk to teachers. This is where I finally started getting accommodations for things.

    I never got any accommodations for the majority of my schooling, my parents didn't want me to be diagnosed and even went so far as to hide from me that the possibility of my being autistic had been mentioned before when I'd started to try and suggest things after having developed an interest in psychology and noticed a near exact number of matches in the diagnostic criteria. At 16 though in England at least I was allowed a lot more agency in such things and started seeing various psychs and communicating with my teachers and the diversity head in order to get accommodations since while I didn't manage to actually get a diagnosis for things covering going nonverbal until the next year I did clearly have issues and as it turned out that was enough to get some things.

    Which was good because it was from around the second year to now that I ended up becoming around 80-90% nonverbal, and so this brings us to college.

    Now, I'll admit college accompanied an exponential amount of more situations in which being nonverbal would be an issue which I didn't have to deal with in my past schools - I could usually just avoid a lot of them and spent a lot of time alone so it's entirely possible that the amount of time I'd been nonverbal had been increasing beforehand and I just didn't notice since I'd gotten so much better at subtly using other ways to communicate and avoiding predicaments in which it would have caused an issue/been obvious in general. But either way as the first year rolled around it came to light that I was starting to be nonverbal around 70-80% of the time by the end and by this year it's become 80-90%. So yeah, it wasn't something I could even try and hide anymore.

    I started using an eraserboard or my phone primarily to communicate in groups I attended, and started notifying teachers in classes it'd be relevant or if I wanted to communicate with them enough (or needed to for any reason) that I'd prefer to get through my anxiety about telling them than stop talking to them as a result. Now I have my diagnosis too (being nonverbal and variations in this being included) I have an accommodation to make sure professors let me use a word processor or eraserboard in class and so that I can get accommodations in verbal based assignments. I've had to provide all of my materials myself, and so don't have a tablet or anything even though I'm sure it'd be a lot easier than my eraserboard and phone. It's been a lot of work working with the admin on this but I managed and in all honesty I'm a lot happier now than I ever was when I was more often verbal and/or trying to hide the times I couldn't speak.

    And that's pretty much a summary I think. I'm sorry that first part in sounds pretty dire but I couldn't really find a way to separate all of those kinds of things out from my experience in being nonverbal since it's so interlinked with each other.
  • arkowalyshyn
    arkowalyshyn Posts: 132 Member
    I have 3 kids with ASD, 2 are non verbal. My 9 year old is just starting to use an IPAD to share some of her wants. She has a few words and phrases that have meaning to us. We have a hope that she will eventually be able to type some of her thoughts and feelings. Our 3 year old is starting to echo some, but no functional language yet! The 11 year old speaks well with a large vocabulary, as long as its about his interest.
    I would love to hear some of your thoughts/insights/experiences, though I understand every person is different. This post was a bright spot in my day, as we were having a difficult one, and you reminded me that non verbal doesn't mean unaware.
  • ShaleSelkies
    ShaleSelkies Posts: 251 Member
    @arkowalyshyn
    Hello! I'm glad to hear that, you seem like a good parent.

    Well I suppose first of all I guess I'd say it's good to work on developing the attitude that being nonverbal is not bad and being verbal is not in some way better than being nonverbal either! And it can really affect one's self esteem and view of oneself badly to think that way even if one just ends up having a little difficulty in verbal speech so I'd really encourage you to raise your children to instead communicate how they communicate best wherever that may lead and be proud of who they are - because being autistic and/or being nonverbal is certainly not a bad thing! (though of course society being made for allistics accommodation is needed and important to get)
    I had a lot of trouble with self hatred for a while because of how it was suggested that what I was was somehow worse or lesser by so many people I meet so it's really important to emphasize this at home to help your kids with what their society tells them especially with horrible 'charities' like Autism Speaks running around.

    On the subject of your children's methods of communication may I ask if you've heard of AAC devices before? They take modeling (which I can explain if you haven't heard about them/you'd like to) and take some time to learn how to use but you can get the apps on ipads easily and they can work really well! There's a nice blog of a family who uses AAC right over here:
    http://niederfamily.blogspot.com/p/our-communicationaac-journey.html

    As for echoalia if that's the way they prefer to communicate it might be useful for them to script and record some common phrases to build up their store of things to be able to echo - I know lots of people think of echolahia as being pretty immediate but there are actually several types including (and sorry if you already know this by the way but I figured I'd explain just in case!) directly repeating back what someone has said, and indirect echolalia - which is repeating things which have been heard at another time such as a line from a movie you saw the last week, obscure or otherwise. I actually know of some people who communicate in this way while otherwise nonverbal and used it a lot myself when I was smaller so maybe it'd help to provide your three year old with some interesting way to stock up phrases to use in this way as well!

    Other than that honestly I think the communication method I'd recommend the most (personally of course, won't work for everyone) is sign language - I haven't even gotten that far in ASL and it feels so much more natural and fluid to me than otherwise. Whatever your local sign language is it's a good thing to learn in general but especially in your situation I think it could help a lot with communicating more fluidly around the home and kids tend to pick up on it especially fast!
  • arkowalyshyn
    arkowalyshyn Posts: 132 Member
    edited January 2017
    Thanks for the reply!

    We like to think our kids know they are perfect the way they are, but every one is always learning, and sometimes we learn things differently (thats a great thing!) Our kids use indirect echolalia, and most of their scripts are being transferred to very appropriate situations, so the words in context are a very welcomed thing. We use proloquo for speech, it uses PECS (pictures/symbols with labels to anyone reading that is unaware) and choice boards with voice output. She is up to 3-5 word sentences for requests. We have incorporated some simple signs for a limited number of situation (stop, all done, thank you, and I love you). They do seem to make a quicker connection to meaning with it

    My biggest issue is trying to assist in areas they are still working on. I hate to see them struggle and so incredibly frustrated by things that come naturally to others. Every time one of my babies is overwhelmed or "acting out", all I can think is, it's this unpleasant to watch and experience, can you imagine living it? I know I need to let them struggle some, and teaching new skills is hard on all of is, but better for them in the long run. Its hard sometimes not to take the easy way out or shortcut when I can just do for them.

    Out of curiosity, and please don't be offended that is far from my intention, are you "visibly" different? For example, my 11 year old appears very typical, and his quirks arent apparent until you talk to or spend time with him. My 9 year old, most people can see right away she has some extra needs, with her noises , how she carries multiple things around, obvious lack of eye contact, rocking. The 3 year old is small, so most assume she is just younger or inattentive. She does love to spin, babble and carry a dangling thing around, looks around a lot, including at people. Everyone is so different. I guess Im trying to figure out which of my kids you are most like! Pm me if you like. My posts are getting too long.
  • ShaleSelkies
    ShaleSelkies Posts: 251 Member
    @arkowalyshyn I'm sorry for the late reply! I'm so glad you're such a supportive parent and you've educated yourself on all this though and are willing to work with different communication methods and the like that honestly makes me so happy to hear (though I'm sorry if that sounds strange it's just... unfortunately rare that I've met someone like you).

    I certainly get how that'd be frustrating, I've pretty much always been in the end of being the one with the issues but in other contexts I have been in situations where say one of my friends is having issues with something I don't really get the feeling of and it's really hard to have to watch and not be sure how you can help at all. Hurts, that is, and hurts more knowing how they must be hurting whatever the context happens to be. Either way as I said if there's anything you feel like I could help with in this feel free to ask, though of course being different from and not knowing your kids my insight will be limited.

    Well I certainly don't make eye contact often, though now if I've figured out that looking between someone's eyebrows will make it look like I'm making eye contact if I need to give that impression (job interviews ugh). Otherwise I send to look around a lot at different things during conversation or fixatedly on one if I'm thinking particularly hard - I also have a tendency to be pretty animated in leaning around a lot and bounding on my feet expressively or just while looking at stuff, moreso the more I feel comfortable with a person or in an area.

    I make noises a lot, though most often just as a form of expressing my current emotions or a low hiss sometimes as a sort of white noise in situations when I'm say trying to work on a maths problem. I rock, more thank I know since apparently I do it unconsciously a lot - moreso side to side than forwards and back but that's in part linked to what kind of chairs are around the college. When trying not to for whatever reason I'll usually kick or shake my legs but really I much prefer to rock. I flap and bounce when particularly excited and I flap a little when anxious too or do this thing where I tap usually at my collar bone or on my thumbs with my middle and pointer finger - very fast sometimes I'd probably be good at those 'finger race' phone games so many folks were doing a little while ago. I also raptor hands apparently more than I know and often won't even realize I'm doing it until it comes to mind or something/someone brings it to attention.

    I have several stim toys I carry in a nice soft pencil case, and I usually carry my backpack around for my art stuff anyway so folks don't really notice because things are in there (I always wear my favorite chewable necklace but it's just a nice yellow star charm and people don't usually even realize it's meant to be chewable until I tell them). I used to take other comfort items such as toys or particular clothing items around with me everywhere and still have periods where I do but not so much anymore, though there are things like certain pictures on my phone and the like with which I do similar so I guess in the end I just ended up with a wider variety of what I could feel comforted having around.

    And there's more but those are just the most common things I do really.
  • arkowalyshyn
    arkowalyshyn Posts: 132 Member
    Thats great. My girls have 'chewlery', though their pendants are an elephant and an oreo cookie. They dont like it around the neck, but love to swing it back and forth. Sofia always has a "friend" or usually 2 (once it was a Styrofoam egg. It came to swimming lessons......) Everyone flaps and rocks, to various degrees, depending on amount of emotion. Sofia is starting to ask for tickle hugs, (a made up squishy/tickly situation we do) so exciting that she is putting words together. I do wonder if you have any advice for dealing with anxiety or negative self talk? My son is verbal, but very extreme with his reactions. If he isnt 100% sure of something, or learning something new, starts with a flow of "Im stupid, why am I dumb, my brain is broken". We try not making a big deal about it, and not to say that it is bad or wrong to do (that "proves" his point to him). We are trying to get him to find 3 positive or good things about himself or even just his day. Any strategies you have come across that may be useful in this situation?
  • Luke_I_am_your_spotter
    Luke_I_am_your_spotter Posts: 4,179 Member
    Just out of curiosity I was just wondering if anyone else here happens to be nonverbal or primarily nonverbal? I can't speak the vast majority of the time and generally it's just exhausting or even painful for me and while this doesn't exactly affect diet and the like (outside of social aspects of fitness) it's just nice to know if I'm not the only one! :^0

    Note: this is not a thread asking for advice on medical causes or similar - I already know and I'm fine this is just how I am!

    It's nice of you to reach out. While I, myself, am not on the spectrum - I do advocate for the rights of children diagnosed with Autism Spectrum Disorder. Possibly Autism Speaks has a discussion forum for you to discuss this with more people who can relate to you. You are right- you are not alone. You seem like a very bright, intelligent woman and I wish you all the best!
  • ShaleSelkies
    ShaleSelkies Posts: 251 Member
    edited January 2017
    It's nice of you to reach out. While I, myself, am not on the spectrum - I do advocate for the rights of children diagnosed with Autism Spectrum Disorder. Possibly Autism Speaks has a discussion forum for you to discuss this with more people who can relate to you. You are right- you are not alone. You seem like a very bright, intelligent woman and I wish you all the best!
    Actually... I'd rather not touch Autism Speaks with a ten foot pole and a biohazard suit. Generally I don't tend to like hate groups or people who believe and teach people like me that we shouldn't exist in general and, well, I'm sure you mean well and are nothing like that personally but you can do a quick google or ecosia search on 'why is autism speaks bad' and you'll find more info on what I'm referring to. Please don't support them.
  • Luke_I_am_your_spotter
    Luke_I_am_your_spotter Posts: 4,179 Member
    It's nice of you to reach out. While I, myself, am not on the spectrum - I do advocate for the rights of children diagnosed with Autism Spectrum Disorder. Possibly Autism Speaks has a discussion forum for you to discuss this with more people who can relate to you. You are right- you are not alone. You seem like a very bright, intelligent woman and I wish you all the best!
    Actually... I'd rather not touch Autism Speaks with a ten foot pole and a biohazard suit. Generally I don't tend to like hate groups or people who believe and teach people like me that we shouldn't exist in general and, well, I'm sure you mean well and are nothing like that personally but you can do a quick google or ecosia search on 'why is autism speaks bad' and you'll find more info on that.

    I've found the group to be nothing but positive for the people and families I advocate for. I did mean well...autism is an issue I hold near and dear to my heart. Do what works best for you. Everyone is different. I wish you luck and hope you find what you are looking for. :)

  • ShaleSelkies
    ShaleSelkies Posts: 251 Member
    edited January 2017
    I've found the group to be nothing but positive for the people and families I advocate for. I did mean well...autism is an issue I hold near and dear to my heart. Do what works best for you. Everyone is different. I wish you luck and hope you find what you are looking for. :)
    Then you aren't seeing a lot of what they have been doing and the effects they've had - it really isn't just an issue of just 'everyone' is different I'm afraid people have been hurt and killed because of what they promote. Maybe you happen to have some nice people in your area, but I would urge you to talk to the larger autistic community and research further into this. Maybe organizations which actually have autistic people in meaningful leadership positions like the Autistic Self Advocacy Network, unlike Autism Speaks.
    That's all I have to say really. What your next step is is ultimately up to you.
  • ShaleSelkies
    ShaleSelkies Posts: 251 Member
    Thats great. My girls have 'chewlery', though their pendants are an elephant and an oreo cookie. They dont like it around the neck, but love to swing it back and forth. Sofia always has a "friend" or usually 2 (once it was a Styrofoam egg. It came to swimming lessons......) Everyone flaps and rocks, to various degrees, depending on amount of emotion. Sofia is starting to ask for tickle hugs, (a made up squishy/tickly situation we do) so exciting that she is putting words together. I do wonder if you have any advice for dealing with anxiety or negative self talk? My son is verbal, but very extreme with his reactions. If he isnt 100% sure of something, or learning something new, starts with a flow of "Im stupid, why am I dumb, my brain is broken". We try not making a big deal about it, and not to say that it is bad or wrong to do (that "proves" his point to him). We are trying to get him to find 3 positive or good things about himself or even just his day. Any strategies you have come across that may be useful in this situation?
    I've seen those pendant types before! I'd actually really like to get the oreo one sometime it sounds really nice. I'm glad your kids like them too then!
    Aa that's a bit of a hard one since honestly it really depends on why he's doing it in the first place? I think something which has helped me a lot in self esteem has been to be shown that everyone has issues doing various things and learning that one can't in fact be 100% certain about anything. And generally shades of grey! Not just in things like games but in morality, art, maths and subjectivity as strange as it sounds were major things which has helped me notice and avoid that kind of cycle for me.
    As I said though I think that stuff really depends on why it's happening - for me a lot of my issues were due to that for a long time I was bullied to the point of thinking that I was just 'too stupid to read or write' and it was ultimately just having my sister be genuinely excited about a story I'd come up with in a road trip which set the ball rolling for everything else. I think in general what you're doing so far sounds like a good idea though - does he have much of a community outside of your family or anything? If not that can help too to help one feel less different from everyone which while not wrong can feel like it is at that age.