Sunday, September 15, 2019
I am 47, and I live in Elko, Nevada, USA.
I am a vocational rehabilitation counselor. I help people with disabilities get and keep jobs. Yes. I love my work. Something people would be surprised to know about me:
I am an international archery champion. If you think about it, excellence in a particular field or event goes along well with autism. You have to do the same thing again and again for hours on end. It's soothing. My biggest accomplishment thus far: My children are both autistic and happy. I am raising them the way I wish I had been treated as a child.
How I want to change the world-I make this world a better place for all people with disabilities, and by so doing I make this world a better place for my children.
Resources that have helped me- Positive role models who are #ActuallyAutistic. Seriously. I have gone through most of my life thinking I was broken. In a paper I wrote on Neurodiversity I wrote "Men are from Mars. Women are from Venus, and I'm from Pluto--which isn't even a planet anymore." The way I interact with and perceive the world is within normal parameters for an autist.
Something you wish neurotypicals (those with not autism others) knew about autism-When I point out that my behavior is like that of someone else in a given situation, please have the decency to explain to me the difference. Whether it happened in grade school or in a professional staff meeting, the response is "We aren't talking about Chris, we are talking about you." That doesn't tell me why my behavior was wrong and Chris's behavior was acceptable. I model my behavior after the behavior of others. If you don't explain it to me, I will never know.
Funny/awkward story about me--I have twins. They both have autism. When the first was diagnosed at age 11, my thought was "That makes so much sense." When they were 14, we were in an IEP meeting for the other. The teachers kept sharing examples of what I later learned to be classic autistic behavior, and I kept saying, "Yes, but she learned that from me." At the end of the meeting the school psychologist diagnosed her with autism. I was probably the only person in the room surprised by this revelation.
Something I want to tell to the rest of the people on the spectrum-You are not broken.
My journey getting diagnosed-once both of my daughters were diagnosed, I sought a diagnosis for myself. To get my diagnosis, I had to convince my therapist, who is licensed to diagnose such things. We went around in circles for awhile, and finally I sat down with my copy of the DSM-5, my LD assessment, a vocational assessment I took in grad school, and the "Unofficial Checklist" of females and Asperger's from The Art of Autism. I wrote a 14 page paper in APA format called "A Case Study on Quirkiness: Why I have Autism." I presented it to my therapist the same way I presented my thesis. He agreed that I meet the diagnostic criteria.
Today I feel about my diagnosis-I was diagnosed at 46, earlier this year. It explains so much about me. I'm quirky. The biggest change for me has been at home and in therapy. I stim freely in front of those who know. When I am feeling anxious in session, I get out a fidget and use it freely. One time I asked if I looked autistic yet. Yep. I sure do.
Obstacles that I have overcame--As a small child, I learned to look around and to mimic the behavior of others. Sometimes I can pass as human, and other times I have failed spectacularly. I told one of my higher ups at work that having undiagnosed autism (or even sometimes now, with a diagnosis) is like the TV show "The Greatest American Hero." I have the super suit but was never given the manual. Sometimes I save the day, and other times I crash into the side of a building. Either way, it's entertaining to watch.
I'm 22 and I am from Nottingham, England
I am unemployed and hate it been desperately searching for work and doing everything I can to find something but...no luck
Something people would be surprise to know about me is that
I have 5 birthmarks but only know where 4 of them are
In my opinion my biggest accomplishments thus far:
That's really hard because I've done a lot I would say orobably the biggest thing that I had to work a long time for would be getting my degree in Psychology with Criminology
How I want to change the world:
I just wish people could be kinder, and I wish I could be kinder to myself. I think too many people have so many harsh ideas about themselves and others that are wrong but if leads to divisions in society and even hatred and it's the cause of a lot of problems. I think if we all just became more accepting of each other and ourselves and was willing to simply keep unkind words left unspoken then everywhere would benefit a lot (like Disney's Thumper said "mama said if you got nothing nice to say, don't say it!")
Resources that have really helped me:
My family honestly growing up I didn't receive support in terms of note takers and things because academically I'm quite competent so people never thought I could benefit from help (and when they did I was told my grades were too high to warrant supporting ). So my family have been my personal and social support and whilst there's been a lot of stress and hard work on both their side and my own...i wouldn't be who I am without them.
Awkward story about me:
One time I was in a game store looking through the ps4 games as I'm a gamer (and was just seeing if they had any deals on any games I might want) and I was in a world of my own debating some games when a store guy BOUNDED up to me and went "everything all right here? Found what your looking for? You look a bit lost!" And as if I was watching this unfold from some other place I heard my mouth suddenly go (before my brain could catch up) "nope I'm fine that's just my face" and afterwards my brain was screaming at the awkwardness but the guy didn't leave after that! No he paused and went "so you looking for something for your partner?" And whilst my brain was at a blank of what to say my mouth took the lead again and went "well considering no partner exists right now...no". I wanted the ground to swallow me up right there and then but apparantly this comment was weird enough to send me. Shop guy away from me at least
Something I want to tell to the rest of the people on the spectrum:
You don't need to see the spectrum as a curse. It isn't some strange evil little gremlin dancing around in your brain looking to see what it can ruin. It is something that gives you a different perspective and skill set from others that are often sought out and NEEDED in the world. When you tell people you have it don't treat it like a dirty secret or shame. Be matter of fact and show that you aren't ashamed by it and they won't be either.
Don't deny yourselves experiences or feelings "because I have autism". You can still grow as a person, learn, love, have families and live with autism. But if you start saying "I can't do that because I have autism" that will stunt you more than the spectrum ever can
Something I wish neurotypicals (those with not autism others) knew about autism:
That we still have a voice and we can use it to talk for ourselves and say what we need or how we want to be treated (even if we may say it in a way that's different from others). A lot of the time they say we "aren't good communicators" but maybe it's just because we're not being given the chance and if we are we're not adhering to THEIR idea of good communication
Signs or signals I am on the spectrum:
How I would watch a person/ group of people to see how they acted and then based my behaviour off of that. My mum saw a lot of signs in my early childhood such as special interests, bluntness, tones of voices and a need to know what was happening and any changes that were happening...as well as meltdowns but people at the time were more focused on my physical problems as I was struggling from another undiagnosed (at the time) condition called Ehlers Danlos syndrome (EDS for short)
How I felt when I was first diagnosed
It was strange because at the time I was 15 and before someone said they wanted me to be referred to look into a diagnosis...i hadn't even thought of it hadn't even considered I could be because I didn't relate to a lot of other people at the time that I knew whom was on the spectrum and whilst I was facing bullies...i didn't consider myself like really different from others
How I feel about my diagnosis today:
It explains a lot now that I know a lot but honestly it doesn't phase me. I'm no stranger to medical things and my conditions are just part of who I am like my brown hair or pale skin and freckles. They're there and parts of me and no one will change them no matter what they may think
Being diagnosed later in life was difficult: when I was quite young because when my mum was trying to explain to schools what I needed and things like that they had a hard time understanding why it was needed (especially since "she's always so we'll behaved!" )
Obstacles I have faced:
Oh boy I've faced a lot. I've faced medical tests and drawn out processes and waiting times for diagnosis on more than asd (and to this day I have some uncertainty around my eds diagnosis for which TYPE of EDS I have). I faced horrific bullying at school with little to no help from schools I've faced physical struggles of dislocating and joint pain and trying to explain to other young people that "yes I'm young but my joints still hurt so no I'm not going out tonight!" And even struggles nearly leading to eating disorders...And now in trying to fins work and even having hard times in living arrangements which are only just being settled...theres a lot in my life that's been hard. But I've had good times too and love and support all the way so I choose to focus on that
I'm 21, from the Chicago area My biggest accomplishment in my mind is teaching myself how to make memes, digital art and electronic music I wish people knew that there is no stereotypical 'autistic person' and we're made up of very amazing and unique individuals with many talents It helped having an IEP in school along with speech therapy when I was younger. I did not have a diagnosis then though. Now therapy is beneficial along with tactile toys and things of that nature, especially when I get worried or feeling as though I'm about to have a meltdown
I am 26 years old physically, 10 mentally, and in terms of having been through weird social experiences probably as old as the original T-Rex itself.
As far as where I am from, well…I ask myself that question every day. My birth certificate says Portugal, but I am still waiting for the weird and eccentric aliens to come and take me back to whatever place I was created.
(And if you all are reading this, this joke has gone on for long enough now. Take me back immediately.)
This might come as a surprise, but I am a teacher. I teach English as a foreign language to young learners and Portuguese to foreigners.
Do I like it? Yes, absolutely, I love what I do. It’s fun, meaningful, and kids are great. They don’t mind my quirky self, eccentric self, and respond well to me.
There are many things I am extremely proud of.
~I used to be obese, a shut in. I failed high school and I had no friends. I was scared to talk to people, depressed and constantly anxious. I avoided going to restaurants by myself during my younger years so I wouldn’t have to talk to the waiter. Over the past 6 years, I've been trying to change my life around completely. I learned to play by my strengths. I got into college, finished it and graduated. I became a teacher even though I had a lot of social anxiety and I am doing a good job. I recently did an internship at my old high school and even got an overwhelmingly positive feedback letter. I am working and doing online masters to specialize even more, perhaps in special education.
I lost all the weight naturally, had a surgery to remove the excess skin and I've been working out and gaining muscle and I love exercising. I became a vegetarian and health conscious and considering I used to live on a steak and chips diet that's an enormous achievement. I overcame some of my social difficulties and am trying to work on that even more. I’ve asked guys for their number at the gym. I am so proud of that.
~I’ve lived abroad and travelled the world.
I’d really like to learn more about comedy/performance actually. I still have these freezes socially. It’s still hard, and I just want to explore ways to work on that and improve.
How I would like to change the world: A big dream here, but I’d like to work on helping education to become more inclusive. I’ve seen a few kids over the years who reminded me a lot about myself and or friends of mine who didn’t exactly fit the bill either. I see how hard it is for them. I feel education needs to be more inclusive. We need to work with strengths more and encourage those, rather than force everyone into this little box and promote the mindset that everyone should be put into one.
I’d like to help with that as I know first-hand to be put into a system you don’t work well with no support and/or understanding.
Resources that have really helped me: My ADHD meds. They are life savers. (I have both ASD and ADHD)
Funny story about me: Ask any guy who has ever been on a date with me.
When I was working with 4-5-year-olds we used to sing all these extremely repetitive songs that really get stuck in your head. There was this hello song I used to sing with all my groups. Sometimes I’d have to sing 3 times a day. You can imagine how despair inducing that might be after a year.
I have this tendency to endlessly replay things in my head sometimes when I am stressed. When I was working in Russia I went to a restaurant for dinner and the waiter very warmly and kindly greeted me in English. I was stressed that day and completely lost in thought. I don’t really know why but I responded to her with a line from the song. (hello, hello, can you clap your hands).
Something I wish neurotypicals (those not on the spectrum) knew about autism: We are not shy/quiet/anti-social. We just get very uncomfortable when we find ourselves in an unfamiliar social situation. Give us time to get used to you. Also, we might not make the best first impressions due to anxiety. But give us a chance and we will grow on you. We’re awesome I promise.
Something I want to tell the rest of the people on the spectrum:
We are all different. It’s hard to find advice that would be relevant to everyone. In my experience - do not let yourself be defined by labels. If there’s something you want to do (within reason), you can find a way to do it. It may take more time; it might be very hard, but you’ll get there. Keep trying and look for support if you need it.
Persistence, determination, and a will of fire are key skills everyone in the spectrum needs to survive in this crazy world, I think. Fortunately, most of us are awesome enough to have them or develop them.
Signs/symptoms that Indicated I am on the spectrum:
There were so many honestly. I didn’t really enjoy socializing, only ate when someone played this one song, I stimmed a lot, etc. I was only diagnosed at 26 though, so people knew I was a bit odd/eccentric they just didn’t know why.
When I first received my diagnosis I felt relieved, then mad. It’s kind of hard to look back at so many things people said to you, that you felt bad about for years and realize there was a reason for them. Coming to terms with that wasn’t easy nor is it something I think most people can relate to.
How I feel about my diagnosis today:I think I reached a point of acceptance. I see my diagnosis as informative. It helps me only as far as it tells me how I work, what my superpowers are and what to watch out for. It does not define me. It is who I am, but it is not what I can do.
That’s the key. Knowing who I am has helped me to develop a very positive relationship with myself. It also gave my life meaning in the sense that it made me want to help people.
I honestly love who I am now, but for me to be able to do this I had to know who I was first.
Sunday, September 8, 2019
My name is Anja, I'm 25 and I come from Slovenia. Right now I'm am working in a medical shop, where we sell and rent out medical equipment, but we also make orthopedic shoes for people who need them.
I am not officially diagnosed with ASD, but I strongly suspect it. As well as ADHD and a little bit of OCD and dyslexia. I can see a lot of symptoms in myself, but I haven’t had the courage yet to speak to doctor or anyone about it (not even my family).
The main reason I think I could be on the spectrum is because of how I interact with other people. How to talk to them, when to talk to them, what to talk about… Especially in a group. I often don’t understand social clues, sometimes I don’t understand when people are just joking or when they are serious. In this situations I often laugh, even if it’s not appropriate (people probably think I just always have a smile on my face). Other things that fit with me and ASD, I am very good at math, I have high IQ and a perfect pitch, I would rather spend time with my cat (or other animals) than people. My handwriting is awful. I can obsess over movies or TV shows, music (anything really) and the next day I totally forget all about it. I can be really hard to talk to, but I can speak a lot about the things I know (school, work, what I already did in my life, things that happened to me). I like routine and when I have a plan of what to do throughout the day. I don’t really have meltdowns (not bad ones at least), but I get really, really annoyed if my plans suddenly change. I stim quite a lot (I wiggle my toes, bite my tongue, scratch my fingers…), but is not that noticeable. Also rocking back and forth or side to side is very calming, but it is not something that I need to do a lot.
Things I associate with ADHD are the fact that I can’t really sit still, I always have to do move some part of my body. My mind can race a mile a minute. If I speak really passionately about something, I can mix two or more sentences together, so it doesn’t make any sense. I get lost in what I am talking about (I just have to explain backstory of a backstory of a backstory, so I lose/forget about the main one).
The most common sign of dyslexia is mixing letters b and d (I figured out how to tell them apart). Also, I am a slow-ish reader and I get lost when reading. I have some trouble distinguishing between left and right (I am right handed, so when I look at my hands then I know which is which). I have trouble reading sheet music (for example, I know where C1 is, so I have to count up to figure out what is the actual note I am looking for is).
And for OCD I just like to do some things in a special order or have it in a special way and you can’t tell me or make me do otherwise.
The scariest part of all of this and sort of why I haven’t gone to a doctor yet is that right now, it’s still all in my head. So maybe it’s not true, maybe I’m just a little bit weird. And if I go to a doctor and they say “Yes, you are autistic,” then it will be final. Then, I am autistic. This is what scares me. Or worse, what if they say “No, you are just imagining it.” What then? Also what good does the diagnosis do for me now, when I’m already an adult, with a job?
I found out I could be on the spectrum through one of my obsessions. One of those things was reading fanfiction (with obsess, I mean I was reading literally all day. I just stopped for eating and nothing else). One story was written by a girl with Asperger syndrome and she coped with her autism in a way that she portrayed her life events on fictional characters. At the time I knew almost nothing about autism so I read it. I was joking with myself and thinking that’s almost like me. Also a lot of the time I like to research phrases that I don’t know (in this case Asperger syndrome). You have no idea how shocked I was reading the symptoms of AS, as it was almost describing me to a point. A lot more researching followed and here we are today.
As a child I probably wasn’t diagnosed, because I didn’t cause any trouble. Yes, I was energetic, but I didn’t disrupt class, apparently I didn’t talk much (I was told this by a classmate in high school) and I had very good grades. I don’t know.
If I am autistic, I would just want people to know about it, without me explaining. Family, friends, people at work… And I don’t want them to treat me differently. Or pity me. Just except me the way I am, watch out for things that trigger me, but don’t treat me differently.
25 years old and in New Jersey Right now I am job hunting. I write articles and manage the website for The Empathetic Aspie. I love writing articles to help others. How I want to change the world: I would like to inspire people to be kinder for each other.
I wish that those who are not autistic knew about autism is that they would be more understanding about how sensitive we can be to stimulation. Resources that have helped me: I was fortunate to have a combination of resources. I had speech therapy and worked closely with my schools counselor on improving my organization skills. In college a class note taker was the best resource because I was able to see what I missed in class. I want to tell further autistic people: To everyone reading this, remember to be kind to yourself. This is advice that I am struggling to follow myself. This mindset can help separate small, human mistakes from larger one. Most importantly I am also happier with who I am than ever before. When I first learned about my diagnosis. The first emotion I felt was relief. So much weight was off my shoulders when I learned that there were others that shared my struggles. It did take a few years to understand how to accept my diagnosis in a healthy way.
Today: I am more confident in myself as a person compared to when I first learned about my diagnosis. I realized that my identity does not start or end at my diagnosis but it is an important part in me. It creates challenged but it also allows me to see the world in my own unique way.
33. Illinois. USA Question Interviewer asked: What do you do for a living? Do you like it? This question is always weird to me. I don’t like classifying any singular thing as “what I do for a living” what is “a living” ? Anyway... The way I was taught to answer this question; currently I stay home with my twin toddlers during the day and challenge myself a couple times a week as a server. Something someone might be surprised to know about me is that: I’ve had over 40 amateur competitive boxing matches with only 5 losses and a national championship on my resume. This put me on Team USA for that year which I was able to train at the Olympic Training Center in Colorado Springs. In my opinion my biggest accomplishment thus far is : Winning nationals in a sport for Team USA is definitely my biggest “accomplishment” which provides tangible evidence for others to see both who do and don’t know me what I have accomplished.. But, honestly, athleticism comes fairly naturally for me. What doesn’t, is feeling a sense of understanding. Discovering my autism is probably truly my biggest accomplishment ever. I truly never thought it was possible to know why I was so often confused, misunderstood, frustrated and subconsciously angry. Having never connected dots fully with anything ever it was the first time it happened and I finally could express how intelligent and misunderstood I’ve been for my whole conscious life. How I want to change the world: Right now, the world is focusing so much on negative energy and spinning things in negative ways when a positive approach is almost always an option just a more difficult one. I hope that I have enough energy and strength to help one person at a time change their instinctual negative mindset to a positive one. Help other people become fully aware of themselves which took me 33 years to do. The more people that can see mistakes as truly and absolutely learning lessons and not an ego crush, the world overall and long term will be better off. This is my belief. Something I wished those without autism knew about autism is that: We just communicate and see the world in a way that only someone who directly experiences it can understand it is similar to how I understand those who experience racism or prejudice for being homosexual. Unless you’ve seen the world through or eyes there is no way you can ever fully understand it. So telling someone that you know them better or know what is better for them than they know themselves is very closed minded. I would never argue with someone who told me who they truly are. Also, many autistics as I understand it do not naturally read between the lines , understand social expectations or have the ability to make assumptions. Expecting an autistic person to do any of these things is really doing a disservice to your relationship. Say what you mean. Mean what you say. We say exactly what we mean unless we are upset (haha), but if we have left any questions of grey area for you please do not ever make an assumption of our intent. Just ask. Please. Our language the way we process in our brain and how we have to express that in current society is like a foreign language. Hahahaha. For example; Imagine you come here from China and speak only Chinese. You have no friends or family and you come to America where English is the main language. This person will be able to succeed when they find the proper resources to help them but until then, how on earth can this person succeed at all? Also, never ever make an assumption from the words that come from an autistic person’s mouth. If you feel any assumption, clarify clarify clarify. Sometimes we don’t say what we really mean but we very very rarely if ever have emotional unsaid intent behind words that we say. Something I want to tell to the rest of the people on the spectrum: Be patient and be kind to yourself. It isn’t always easy but you have many people who truly feel and experience things the same way you do. Find your people that get you and help you. Take care of yourself.
Resources that helped me: I am self diagnosed at 33 so I am still exploring helpful resources for me. I am sure I can think of resources that would have benefited me as a child or during school but it’s a little hard for me to make any assumptions about a change in my past and knowing for sure or not if it would have helped me. In my ongoing self discovery I use anything and everything I can get my hands on to learn more about neurodiverisity as a whole.
Signs that showed I am Autistic: I figured it out over a year long process of self discovery after too many dismissals from doctors and those I had tried to call out for help. I always figure things out one way or another and this is no exception. I was very shocked to come to this conclusion and it has not been easy. I truly had no idea what was wrong with me and my constant discontent with my self I was very close to giving in. I have two young children though one of which I see so much of myself it helped keep me motivated in getting to the bottom of my self discovery of total awareness. I did not talk to anyone specifically about that because I do not really care when they did or didn’t suspect me to be autistic and it doesn’t benefit me to ask them that question and threaten my progress with the potential of someone telling me I am just trying to convince myself or that I just want to be different. No thank you. How I felt when I was diagnosed: Like the biggest weight was lifted off my shoulders that I didn’t even realize was as heavy as my entire body weight. I thought it was just a chip on my shoulder ... the reason “why” for my discontent. Oh no. It’s not a chip! It’s a weight the size of your body! Wow! Interviewer asked: How do you feel about knowing your diagnosis now compared to when you were first diagnosed? Hmmmm... loaded question for me given I am still in the processing of weeding through what was masking and what was me being truly me. So, it fluctuates. Some days I feel more overwhelmed when more clarity and validations are made that just further demonstrate the high level of masking I was doing. I have slowed down drastically in life because I realized I was speeding up everything so I simply was unable to truly feel the constant state of anxiety and being on the verge of panic attacks. I am mostly hopeful for the future and that I can find a balance eventually but being aware that this is going to be a pretty painful and difficult yet amazing and remarkable journey. I can’t wait to see how it all plays out I just hope I can teach myself how to sleep again because I always have more to learn about myself and it’s exciting and it gives me energy. Weeding through 33 years of memories, experiences, mistakes, consequences, roads chosen and how different they may have been if I knew this sooner. That does not mean I would choose that path. I do not think I would. I feel the trauma and pain I have experienced has a phenomenal big picture reason “why”. It may only be phenomenal to me; but it will be phenomenal. So overall I am happier but more tired. Not having the diagnosis for a long time made more things more difficult: I have had so many gut blowing experiences I would constantly relive and not know where things went wrong. Now it see clearly why they did. So yes things were harder but that does not mean I would want to know sooner. I also had a lot of success in certain areas. Now it’s time for me to succeed in an area I never thought was possible! Finding MY way the right way. Interviewrer asked:
What obstacles have you faced in life? How have you gotten through them?
I could write a multiple chapter book on this so I will simplify best way I know how. 1) everytime I didn’t feel “different” if just for a brief moment it would not be long before that feeling escaped me and I was smacked in the face with this feeling of “seriously what in the heck is wrong with me, why am I the only person that this happens to” 2) due to my looks and athleticism I was welcomed into the popular extroverted groups but it was not long before I just felt like I did not want to be around these people anymore. It ever made sense but I just convinced myself that it was because I was an athlete and athletes have different priorities and that is okay.. but then, as relationships developed More with my athletic driven friends I would eventually feel like an outsider yet again. 3) consistent confusion on why I upset someone for just being who I am; why do people put these expectations on me but I don’t put those on them? I don’t understand ??