๐ซ Share Your Story Here - Autism Support ๐ซ
Hi to everyone who is part of this awesome community! ๐
Sometimes it can be overwhelming thinking of writing a brand new thread here and sharing your story... So I wanted to start this thread in hopes that it will help you out.
This is a safe place for you to share about Autism without judgement
Here are some questions that can help you get started in sharing your story ๐ฌ
โจWhen did you get your diagnosis? If you're not diagnosed yet, when did you start thinking that you are autistic?
โจ How does it affect you/your daily life?
โจ Do you have people in your life you feel like understand or support you? If so, who do you have?
โจ If you don't have support, what support do you wish you had?
โจ What is something you would like to educate other people on about Autism ?
โจ What resources do you wish were on Cups about Autism ?
These are only a few questions to get you started but feel free to share anything that you would like about your story. You are important and deserve to be heard
Some other threads that you might find interesting ๐ฎ
๐ป Welcome Thread - come introduce yourself and check out all the awesome things about this community.
๐ป Taglist - Feel free to sign up to our taglist so that you can be tagged in threads like this one!!
Taglist - @Alwayshungry983 @azuladragon34 @Fozziewozzie @GwydionRowan @HarmonyBlossom @HatsEatYou @Jenna @JustMeUwU @NightOwl2003 @sentientape @smolLITTLEpotato @SunnyCat0 @teenytinyturtle @theboymoana @tommy @Vivikun9 @wishfulWillow6962
@beck1
Thanks for this great post, Becki!
โจWhen did you get your diagnosis? If you're not diagnosed yet, when did you start thinking that you are autistic? - I got my diagnosis very young in childhood (around 4-6 years old) I don't completely remember.
โจ How does it affect you/your daily life? - It mostly affects my sensory and communication which leads to people thinking you're a freak or a weirdo.
โจ Do you have people in your life you feel like understand or support you? If so, who do you have? - I have my family who is supportive and a few friends, but outside of that circle, not a lot of people take time to get to know you or understand you.
โจ If you don't have support, what support do you wish you had? - I have support, but for others, I hope they find someone who can understand them or at least supports how they feel about things.
โจ What is something you would like to educate other people on about Autism? - People with Autism aren't dumb and we do feel and express emotions.
@Jenna
Ooh hey Jenna! Always awesome to see you!! ๐
Thanks for sharing a little more about you!
Autism definitely impacts communication. Its sad that people misunderstand at times. It would be nice if those people supported instead of judged...
I'm really glad that you have your family and a few friends who are supportive! Thats definitely important
Yes very very important point you made. People with autism certainly are not dumb at all! Its sad to even think someone would think that
@beck1
โจWhen did you get your diagnosis? If you're not diagnosed yet, when did you start thinking that you are autistic? - I got diagnosis last year on my birthday. I did my testing before my birthday but on my day I got my diagnosis for high functioning autism.
โจ How does it affect you/your daily life?
-well to be honest, not much as I still struggle with social interactions in some situations but it gave me understanding of who I am but it was still struggling to know my strengths with my autism.
โจ Do you have people in your life you feel like understand or support you? If so, who do you have?
- my family and a few friends support me. They help me make sure we make clarity on "is this what you ment or something else", listening, and making sure I understand the subject that is not too confusing.
โจ If you don't have support, what support do you wish you had?
I do wish I had a better understanding of social ques, interactions, or anything that would doesn't lead to a "im acting crazy" sense
โจ What is something you would like to educate other people on about Autism ?
Autism is a spectrum and it is different from person to person like any nerotypical person but people on the autism spectrum disorder need a little more support as we don't want to hide behind a mask and just play on the same stage as anyone else.
โจ What resources do you wish were on Cups about Autism ?
Hmmm this forum is a great start. We could definitely have a posting on strengths on having autism and having resources to look at for people who are the spectrum that can look at if they are adult late diagnosed so we can see something that says "hey that is like me"
@Vivikun9
Thank you for participating in this thread!
How are you feeling with the diagnosis since its been almost a year?
I can hear that you struggle with social interaction! But I'm glad that getting the diagnosis gave you understanding ๐
Super glad to hear that you have people in your life who support you! It sounds like they really care about you. Its nice to hear that they clarify things too!
I really like that you mentioned that autism is a spectrum! Very very true. Every autistic person is different. We may
I love the suggestions you made for future resources! @sleepyshycat wrote an awesome thread about Autistic Strengths that you may find really interesting! In terms of resources about people who are diagnosed later in life, would you like to tell me a little more of what that would look like?
@beck1
Hmmm like it can be chracters from TV shows, movies, and even people in real life with autism educating people what being on the spectrum us like.
โจWhen did you get your diagnosis? - I was diagnosed this year at the age of 34.
โจ How does it affect you/your daily life? - I'm not sure how to tell other peoples intentions so it gets me in to some sticky situations. I'll believe what people tell me as I can't understand why anyone would lie. I'm quite sensitive as well to sounds, smells and other things.
โจ Do you have people in your life you feel like understand or support you? If so, who do you have? Thankfully yes, I do have a lot of people who understand. Some people say they understand and accept it but as soon as my needs become an inconvenience they find it problematic or don't believe I'm autistic.
โจ If you don't have support, what support do you wish you had? I'm fine as I am.
โจ What is something you would like to educate other people on about Autism ? When people use the term "high functioning", what they mean is your autism doesn't impact other people greatly. They don't understand the struggles you have underneath in order to present so well. I have been going through life doing my best to fit in for 35 years now without a diagnosis, of course I don't look or act like I have autism... that doesn't mean it doesn't impact me.
@Vickeee thanks for answering the thread!
How have you been since you were diagnosed? Has it been helpful for you?
I can hear that being able to tell people's intentions can be hard sometimes! And it sounds like you struggle with sensory input too. I'm really glad that you're here! I would love for you to be part of this community! I think you would be an awesome part of it!
I'm really glad to hear that you have people who understand you!! That's super important! But it is unfortunate that some people don't always mean that. It's terrible to hear that people don't believe you're autistic too. I'm so sorry.
I have been hearing this a lot about being labelled "high functioning" and it's definitely very interesting. I would agree that some of us are definitely highly masked but internally we are definitely really struggling.
@beck1 hello so i was never diagnosed but someone i know who has two autistic children looked at me and said, "I wonder if you have aspergers" and i decided to look into it cuz i never thought about it. Ive done more research than you know and i know i have it.. so i went to my parents to ask if i could get a diagnosis because i finally felt heard and finally understand why i feel certain ways and i would really love the help. My parents tore me down and said no. Im going to wait till im moved out to get one so i can get help because this is so hard to deal with. All my life ive been the weird kid and no one understands or understood so thats why whenever i looked into autism i finally felt like i have a home. Im sorry for that being long
@Iwhdjheieh678
I'm so sorry to hear how your parents responded to you. It can hurt so much when the people that we love don't accept us for who we are and don't hear us. Its good to hear that you are still wanting to be evaluated though.
I really hope that you feel comfortable with this community and feel like you can make some connections here
@beck1
Thank you so much <3
Iโve never been diagnosed. Grew up poor so not much healthcare, but I definitely knew I was different from most ppl around me based on my interests as a kid and lack of desire to socialize with others. I found far more comfort in nature and with animals and some indigenous elderly members of my community than I did with kids my age. Learned more about autism in my early 20s and realized most of my friends were diagnosed as autistic. They all kept saying I was likely autistic haha, but I started identifying with symptoms such as hyper-focusing (and subsequently info-dumping), particularities about what my feet and hands touched, and having a strong aversion to loud sounds like balloons popping. In elementary, I started noticing how hard it was to make and keep eye contact. Then Iโd try so hard to keep eye contact to the point that I was staring intensely and creeping my teachers out. Iโd get so anxious, Iโd start sweating. ๐ I also would eat foods purely for the texture and not the taste. Remember when rice cakes were popular? I loved those tasteless bits of styrofoam bc they were very stimming to eat.
I have structured my daily life around my sensitivities. So I try not to have many loud sounds (unless Iโm singing) and Iโve worked pretty hard to live alone bc most ppl who arenโt autistic think my mannerisms are weird. Iโm also quite polite and a little giddy towards others and a lot of ppl are afraid of that demeanor. I usually use stimming to my advantage in my work life, like typing. I have a writing intensive job and itโs very soothing to feel and hear the keyboard sounds. I color code almost everything for ease of mind and I have at least a dozen pairs of grippy socks so my feet donโt have to touch the floor. Iโve also gone through so many pairs of shoes bc Iโm still learning how to not walk on the sides of my feet, haha. Additionally, unless I have pent up energy and/or am manic, Iโm very introverted to a fault. Iโve had neighbors knock on my door and I always open it an inch or two with the chain lock and just stare at them until they say something. Iโve been a hermit for as long as I can remember and I honestly love it.
No. The ppl in my life are mostly cut off bc they were quite violent towards me for being who I am. No one likes that Iโm soft-spoken, but if Iโm manic and loud, thatโs a problem too. Ppl at work try to bully me bc they think Iโm weird, but theyโre also jealous of me bc I excel at everything I do and am extremely fast and thorough with my documentation (bc typing is very stimulating to me). Also itโs hard to go through life without ppl thinking I must be guilty of something because I can get wide-eyed and fidgety when someone suddenly interrupts me and I guess it makes it look like I was doing something I shouldnโt have. A friend once pointed that out to me when I was 15 and itโs been proven true since. My partner however understands and supports me bc sheโs autistic too, so itโs something we bond over and weโve developed codes to express how weโre feeling when weโre a bit nonverbal. Itโs also nice to just communicate with each other clearly and bluntly bc we canโt fully understand each other otherwise. It eliminates a lot of common communication problems couples have.
I wish I had family members who supported me. It wouldโve made life easier to know there was someone on my side. I wish my job had a zen room where I could decompress away from others. No one seems to care when Iโm meditating and often interrupt me. I also wish that there were disability accommodations in this society for autistic people and not just in the education system.
From what Iโve learned, autism isnโt a one size fits all problemโฆitโs hardly a problem at all. Pplโs reaction to autism is the real problem. And there isnโt a one size fits all solution and/or approach to autism. Just talk to the individual with autism and understand their needs and concerns. Also be sure to not make much eye contact. ๐
Iโm new to Cups so I wouldnโt know what resources could help that arenโt already here. The fact that thereโs an autism sharing forum here with a color coded prompt is amazing to me already. I do hope to learn more about myself by reading everyone stories here. Thanks for being welcoming โบ๏ธ
@RaynenSkye528
Thank you for sharing a little more about you. I'm sorry to hear that you didn't get the opportunity to be evaluated yet but it sounds like you have found a little "comfort" in learning more about autism and the things you connect with. By the way, I like rice cakes too ๐คฃ
Where do you currently live? I'm sorry to hear that people think your mannerisms are weird ๐ I hear you about the keyboard too. I have a very "clicky" keyboard and it is very satisfying!! Lol. So I get that. Ooh I love color coding too!! Have you ever tried insoles for your shoes? Those help me when I walk on the side of my feet! They help guide my feet into the right position! But everyone is different in what they are needing!
I'm sorry to hear that people were violent towards you... It sounds like you feel like people have a hard time accepting you for who you are as a person. I'm sorry to hear that people bully you at work too. What do they do to bully you?
I'm really glad to hear that you have a supportive partner! Thats really awesome and very important! ๐
I can definitely hear that having supportive family members would make things easier. I'm sorry that's not something that you have. Depending on which country you're in, there are accommodations for autistics.
There definitely isn't one shoe that fits all with autistic people! You are right!
Yay so glad that you are part of this community! I hope you are able to make some connections here!
@beck1
When did you get your diagnosis? If you're not diagnosed yet, when did you start thinking that you are autisic?
I have always thought that I might be autistic. Some moments more than others. I have spent a lot of my life trying to understand other people and how they function and trying to 'fit in' as best as I can but I've always known but I would always dismiss the thought and feeling until recently. I am 23 and it was this year that for the first time I mentioned the thought that continuously pops up in my head especially when I'm in a hyperfocused mood to an old friend. After saying it out loud to the friend I researched the symptoms of autism for the first time in my life and I've never read anything that explained my experience of the world so accurately.
โจ How does it affect you/your daily life?
I just find social interactions and people draining. It's weird I know how to function in a social scenario, not all of them and I find groups really overwhelming and I tend not to speak, but it's just overwhelming. Some days more than others for example today I just got back to my room and just felt so panicked and anxious because just having to interact with people it just idk I have panic attacks sometimes but I've never said that to anyone but it's genuinely so overwhelming and it makes me so anxious. Not all the time but when I have to spend lots of time with other people like I'm doing a social thing now so it's been five days of having to be social and function in those scenarios and it's just so tiring. I have panic attacks often. I also struggle to eat and sometimes showering feels so difficult but I'm getting a hang of it more now but still. I think I have an eating disorder. I've never said it out loud and I've been thinking about it for a long time but I think it is linked to autism. Sorry to have written so much I don't get a chance to talk to anyone about this ever. I could go on like everything is so bright and noisy but I'll stop here. It just impacts me in many different ways.
โจ Do you have people in your life you feel like understand or support you? If so, who do you have?
No I feel like I spend a lot of my life trying to understand others which is fine because it's my choice but it makes me sad because I don't feel like anyone truly understands me or tries to understand me. I don't really have anyone. It's fine because I support myself a lot but sometimes I think about the fact it would be nice to have a genuine person who understood and truly cared.
โจ If you don't have support, what support do you wish you had?
I think just someone I could relate to. I am a PoC LGBTQ person who is neurodivergent and idk it's always nice when you have someone who can truly understand the intersecting components of an identity with different facets. So I just wish I guess I had at least one friend who could understand all of it. Maybe that's too much to ask hah idk and also above that it would just be nice to have a community that understands the experience of autism, especially in adults. It's so specific and unique and it would just be nice to read other people's stories and talk to people and relate to them and know that I am not alone in my experience of the world.
โจ What is something you would like to educate other people on about Autism ?
The fact that autism is unique to each individual and shows up in diverse ways. Of course there are some aspects that might be more common than others but masking and the media mean that lots of people have big misconceptions about autism, especially autism in those who identify as women. I wish people would listen more to individuals and their understanding of their own experience, especially since recieving an official diagnosis for adults is very difficult and expensive and it can take years with certain healthcare systems. It makes it so inaccessible and it's not fair to not be believed when talking about your own individual experience just because there are barriers to accessing the necessary support.
โจ What resources do you wish were on Cups about Autism ?
I have only just joined this forum but I think it would be cool to have a friend aspect where we could make new friends with other people who have a similar experience.
@warmheartedBlackberry1120
It sounds like for a while, you wasn't sure why you did the things you did but since looking into autism, you found some comfort. Do you think that an official diagnosis is something that you will want in the future!
I understand feeling drained after social interaction. That is something I experience too, and I know others who are part of this community understand that too. I'm really sorry that social interactions are so hard for you sometimes that you have panic attacks. That sounds super hard.
I also hear that you think that you might have an eating disorder too. That must be very difficult. We do have an Eating Disorder Support community here if this is something you think might be helpful for you?
It must be hard to feel like people don't understand you even though you have spent your life trying to understand others.
I can hear that you are wanting someone to understand. Have you ever thought of making a thread on the forums about your experiences to see if anyone else goes through similar? Would that be comforting for you?
It is unfortunate that society doesn't really know that much about autism other than the misconceptions! It would be awesome if society would listen more to personal experience than text books.
I'm really glad that you are part of this community!!
@beck1
โจWhen did you get your diagnosis? If you're not diagnosed yet, when did you start thinking that you are autistic?
I havenโt been diagnosed yet but I will have one around September or October but everyone in my family has it but getting one can be expensive and time consuming so we havenโt been able to get me one till now due to a study on autism
โจ How does it affect you/your daily life?
I struggle a lot with showing and feeling emotions. Most the time I have a black emotionless face my teacher actually mentioned it yesterday saying she can read me and that my poker face was very good. A lot of the time people think I am sad or upset and it gets almost annoying how offten people ask if I am okay as someone who most the time doesnโt have a emotion if that makes sense I am just okay or neutral I am not good nor am I bad this also concerns people. (I could go on with other stuff but Iโll leave it a this)
โจ Do you have people in your life you feel like understand or support you? If so, who do you have?
Many friends in my friend group have autism so we joke and talk about it all the time
โจ If you don't have support, what support do you wish you had?
In my new friend group I donโt think they really had heard of it before I joined they donโt really ask much about it or how it effects me I wish I could tell them more about it and how it effects me so they understand what I do more of the time. And I havenโt got any support at all for autism cuz I mask a lot so people donโt think I need help when I do
โจ What is something you would like to educate other people on about Autism
Difficulties with emotions and going non verbal
โจ What resources do you wish were on Cups about Autism ?
im not sure if I am being honest I like these forums though I get to tell people things I wish I could tell more people
@GwydionRowan
How do you feel about getting evaluated in a few months? It can be very expensive to get evaluated, that's for sure.
When you say you struggle with feeling emotion, do you want to share more about that?
I'm glad that you have friends who understand and accept you. That's important!
With your new friendship group, are there ways that you feel like you could tell them how you are affected? What would you want to say to them?
When you say going non verbal, do you mean in specific situations?
I'm really glad that you are part of this community. I look forward to seeing you around Cups
@beck1
I was diagnosed with autism and selective mutism last year i had symptoms for four years .
They affect me alot because have rountines if they need to change without notice panic . i am panicky around new people crowded places and loud nosises .
If you're not sure what selective mutism is its when you cant speak in social settings because anxiety triggers a freeze response .
@Howegeorgia
How do you feel about being diagnosed with autism and selective mutism? Has it been helpful in understanding yourself a little more.
I hear that changing plans suddenly can cause you to panic and that you panic around new people. Have you found ways to deal with this?
Thank you for explaining more about selective mutism. I think its definitely something that would be awesome to educate more people on.
@beck1
I have some copying strategies but they never help
โจWhen did you get your diagnosis?
If you're not diagnosed yet, when did you start thinking that you are autistic?
I got my diagnosis in 2015, which is pretty late in life.
I am glad that I did get my diagnosis though, even if it was when I had grown up.
โจ How does it affect you/your daily life?
I have sensory challenges that can be very troublesome for me.
I have a hard time understanding when it comes to "reading between the lines",
like when people say one thing but mean another thing or are being sarcastic.
I have a low social battery, so I need to recharge after hanging out with people for a day.
I have some family members who are absolutely amazing and are very understanding,
they are very patient and understanding and are always very caring towards me.
I have friends, but I haven't opened up about my autism with them,
but they are still very understanding about my social needs and stuff.
โจ If you don't have support, what support do you wish you had?
I want to answer this question as well, because what support I don't have is the
support from the healthcare system, they are aware of my needs and what type of
support I need. But unfortunately, the knowledge and understanding of Autism isn't
really there yet, I believe. I have to inform every doctor I go to that I have autism,
and it's always a hit or miss. Either they will treat me as a person with understanding
of my situation or they will treat me as a unintelligent child, which is very sad.
โจ What is something you would like to educate other people on about Autism ?
We are also humans, we are also capable of being hurt and we have feelings.
We are not dumb just because we're autistic, not at all.
๐
Just like neurotypicals are not dumb because they are neurotypicals.
๐
No persons with autism are the same, we are all different in our own way,
just like no two humans are not the same.
๐
We can have special interests and be very informed about certain topics,
if we want to share those topics with you, then know that we feel comfortable
around you and take that as a compliment. Because often it can be hard for us
to open up and to connect to others in a way that makes us feel safe.
๐
We are capable of having high emotional intelligence, be empathetic, intuitive.
We are even capable of understanding body language and facial expressions, but
what we have to do is learn them instead of them come to us intuitively.
๐
We are brilliant at being ourselves, when we've learned to unmask.
And when we have, allow us to be ourselves.
We are just as lovable when we've unmasked.
โจ What resources do you wish were on Cups about Autism ?
I would love to see:
Information about YouTubers who have healthy and
informative material on autism.
๐
Ways for neurodivergent people to cope with their
unmasking and supporting methods to do so.
๐
A Forum post where Autistic persons can share helpful
tips that help coping with their autism.
๐
Information on sensory friendly toys or stuff that help with
dealing with autism.
For example - Loop earplugs and such.
๐
This is all for me for now :)
๐ Thank you for making this wonderful forum post Beck ๐
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@AnnaSilverberg always awesome to see you!
I'm really glad that getting diagnosed was something that seems like was helpful to you! Did it help you have more understanding about why you do the things you do?\
Sensory challenges can be very difficult... I struggle with that too. Are there specific sensory stimulants that are harder for you than others? Reading between the lines can be super difficult and need clarification at times.
I'm really glad to hear that some of your family members are very supportive! That's important. I can understand it can be hard at times to open up to friends too! Is there something that stops you from sharing with your friends or do you think it's just something that isn't needed.
The healthcare system can be so hard to navigate at times and its very sad when medical professionals are not educated about autism or just believe the misconceptions about autism... I'm sorry to hear that you have had bad experiences with doctors...
All the points you made about things you would like to educate people on are awesome and I agree with everyone one of them. Thank you for sharing!
Thank you for the ideas for resources too! I have written them down and added your name so that I know they came from you! Its important to me that when people come up with ideas, they are credited. Let me know if you would like to be part of making any of these or you want to make a thread etc
Did getting the diagnosis help me understand why I do or don't do certain things?
Yes, it did. It made many things make sense for me, things that were easy for others,
such as making eye contact or dealing with changes were and are rarely easy for me.
And it finally made sense why I had to put in so much work into learning online about
how people express themselves, how to read into body language and facial features.
Due to my trauma, I have always been able to know how a person who's around me feels,
I'm very quick to be aware of mood changes and such. But body expression was still a mystery.
I am also very uncomfortable with crowded spaces, such as elevators.
And also large spaces where there is too much of everything, people and things.
(Ikea and I don't match well, I get anxiety just going inside that store)
I have a very sensitive hearing so I often hear sounds that are harder for others to hear.
Which can be both a blessing and a curse, because you're quick to notice stuff,
but you also have to endure a lot of noise.
I have the hardest time with walking by the laundry products, people wearing perfume,
strong food smells of food that I don't like and things of that nature.
I'm happy to share resources and ideas
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