Asperger's Syndrome and pony collecting...

[melodys_angel]

Yikes!

I want to stress this.  An online test is NOT a diagnosis!  Please, go see a doctor and get them to set you up with someone that 'can' make a proper diagnosis.

It was strange..I was talking to my AS friend yesterday about this and they pointed out that a lot of similarities exist between this and a few other conditions (one of which I was officially diagnosed with).

You made me second guess myself but the best we could come up with was that the one thing I do have is soo severe that it can flip and ill get AS tendencies that are situational--including be overly sensitive to sound (ill hear things that aren't there) or smell..or wigging out because I see dirt or dust.

You also made me think about my own past.  And yes, there are key triggers there...excelling at an early age (I was doing long division before grade 1) but stalling after that.  Not caring.  Suddenly caring once I hit highschool.

It fits, right? Not soo much--there were other factors im not getting into that made that stall happen. It could have been prevented but it wasn't...mostly due to a shy personality and a lack of caring on the schoolboards end.

A lot of things do cross over.  I haven't listed what I have but theres a good chance you can probably figure it out.

Please. DO NOT think youve confirmed you have something based off of an online test. Those things are not accurate..you need an actual person to talk to you to determine a result.

[Taffeta]

@Koudoawaia
You sound a lot like me (although for me it's writing rather than art. I WISH I was artistic!)

I've heard that usually people on the spectrum have select interests while I have almost too many? I am constantly jumping from one interest to another and I am not good at being organized at all though I want to be.

The idea that people with ASD have one interest they fixate on 100% of the time is an urban myth. I'm not just speaking from my own experience but in the case of the students I worked with too. Even the more profoundly ASD students, who weren't Aspergers but had more complex diagnoses had more than one interest. I had a student who loved G4, but could also recite the entire script of Spongebob episodes. Another was into MLP but also well into pokemon (ironically, he designed a Pokemon Moon and Sun last year xD). In terms of my higher functioning students, they had a range of interests and they would slip between them. In my experience, I do this too. I have MLP. Jem. Various different anime fandoms. Japanese. Languages in general. Gardening. Writing. Reading. Music of varying types depending on my mood. All of these are things I feel I appreciate in technicolour, rather than just in passing.

I also agree with the fact an online test is not a diagnosis. However, there are still practicioners who claim that ASD can be/needs curing or that it doesn't exist. You have to make sure that you are being referred to someone who will consider all the details properly and clearly and give you an objective diagnosis. In my case, the specialist spoke to me and then to my family, and compiled a lot of additional data before issuing me with the written proof of having ASD.

There are a lot of people who identify as ASD even though they have no diagnosis, and this is largely because of the problems with getting diagnosed as an adult. So the online test is a starting point if you want to pursue it, but it isn't a diagnosis. Just something to think about. And for some people, that's enough.

Another interesting thing I learned while working as a support assistant in the college was how much ASD is a spectrum disorder with other conditions like dyslexia, ADHD, dyspraxia, OCD and such. They are all interrelated and show up in differing degrees in a lot of people. So someone who has a dyslexia diagnosis may have a couple of more ASD traits but not have ASD. And it does run in families, too. I also knew of a significant number of students who had multiple diagnoses of these traits. Some of them also had epilepsy in their medical history. I don't have this, but I worked with some Aspies who did. So it's worth considering that if you have a couple of traits that seem ASD but don't totally fit for you, you might want to look into the other possibilities.

It isn't something that you NEED to do unless it's important to you resolving who you are and moving forward with your life. But I just want to underscore that it's not necessarily a yes/no diagnosis and there are other potential factors that might be playing a part.

(For example, my navigation is legally recognised as so bad that I qualify to have a bus pass. My mobility is therefore legally recognised as impaired, although I am able bodied, because I am potentially able to get lost and not be able to find my way back again. This is not an Autistic trait, and I knew some ASD kids who were great at navigating and who could recite map directions with no problem. I believe it is a dyslexic and dyspraxic trait, but because it's on the spectrum, it's like having a brain buffet in which you pick a few bits and pieces from each bowl...)

[FantasticFirefly]

. while my brother delayed in speaking and regressed at stages I spoke early and they couldn't get me to stop talking about my interests. There was no issue with regression. And, eye contact and speaking on the phone with strangers are two things I have not needed for work thus far.

I spoke at ten months. I read at 2. I added up road speed signs in my head at 4, without anyone teaching me maths. I could write at 4, too. I had a much broader vocabulary than anyone else I went to school with before I even went to school. And I have always talked a lot about stuff xD.

With HFA students and Aspie students I met, I haven't yet met one who went through any kind of regression. I think that tends to happen with more severe or non-verbal types of autism.

Communication is an issue but its an issue in different ways for different people. Girls are generally more communicative and better at mimicking, anyway - but being verbal doesn't determine yes or no with this. Especially when a lot of the diagnostic stuff is based on guys, still, and a lot of 'expert' opinions are flawed because the bulk of data has come from guys. As I said before, the Aspergirls book is worth a read, even if just a casual one. I haven't found much else that's really girl-Autistic centric...

Thank you for the reading suggestion. I will see if my library can get that book in for me.
Another interesting thing, UK may be ahead of the curve here. It was a UK article about autism and forgotten women. My spouse read it. Women with missed diagnosis as children who were diagnosed as adults and he recognized me in it and told me to read it. Before meeting my family he wanted to read what he could about autism for my brother as when I stay with family I have a ritual of repeatedly reminding my father to TELL my brother when I'll be in town ahead of time so him and I can go out and do things together. He would hear me arguing on the phone with my father about it. OH asked me if there was anything else he should know before meeting him and took it upon himself to read what he could and ask questions.

The bolded is VERY interesting. I would chalk up my issues being a visual brain, or "daydreaming" constantly. My youngest brother I have asked my mom if he was tested. I thought for years he was on the spectrum but my mom was adamant that being no regression is the reason that was impossible! She may still be right, we do come from a long line of smart but very socially awkward stock on my fathers side. So the possibility is there of not really having autism.

My mother had 5 kids. two from an early marriage, then us three with my father. She was always very proud of the comments she received for us two as children (myself and my youngest brother). "did your BABY say that??" both of us spoke much earlier then normal, used more complex sentences were able to read as toddlers. Her first two met normal milestones, so she was surprised with us. and we both got eaten alive in school and didn't relate to our peers for using language the other children didn't (and also generally for being "weird" for me being pale to the point of looking sickly didn't help any!). I remember kids teasing me and calling me dictionary and taunting me for using "big words". my retort was "I think the more accurate term would be thesaurus" As you can see I wasn't exactly popular! I did fare much better then my youngest sibling, I found a decent enough system to be mostly left alone and blend, but sometimes if a teacher or student was incorrect I couldn't keep quiet!. And, my mother this is the same woman who hates the establishment for thinking my diagnosed brother had an IQ of 40 and for thinking we two were stupid or disturbed (my youngest brother had his fair share of issues.... more social and would shut down in class but could do the material flawlessly when he wasn't being tormented by his peers or teased by his teachers. Boys tended to be more physical against their target sadly. and when he couldn't take it any longer he'd hurt himself, meltdown and isolate himself. and they tried to say he was psychologically disturbed! He's fine. the amount of abuse the school allowed him to endure was criminal). when I was assessed for a LD she stared blankly at them when they were shocked at my pattern recognition scores and reading comprehension so I didn't fit any of their criteria, possibly dyslexia but not enough as I had no issues understanding written material "I could have told you that, she read years before kindergarten." and called them idiots for thinking my issue was anything other then writing or spelling. She didn't allow anyone to intervene with my youngest brother because at that point she was convinced the experts had no idea what they were doing, and would only make things worse.

You're absolutely right that there are positive traits to it. Those of us with Asperger syndrome tend to have a high vocabulary and be very intelligent and the thing that's our main focus (for me it's always been my art) we excel at. The heightened senses part of it that cause anxiety have made me wish I didn't have it but my husband and mom both have said that it's part of what makes me who I am and I wouldn't be me without it and they are right. I can't stand to be crowded. I need a lot of personal space and it's horrible the amount of people that don't respect another person's personal space. I am extremely sensitive to fragrances. They can cause me to feel sick and an overexposure to things like perfume or laundry detergents/cleaners have made me actually get a sore throat. Last time I used Clorox wipes to clean in my bathroom, the scent stayed for days and I ended up with strep throat. I take my headphones and mp3 player with me wherever I go because I can't stand loud noises and drowning it out with music helps. So yeah. That can make  life hard and since I work with retail, those anxieties get triggered an awful lot. They're awfully good at accommodating meat work  though. An official diagnosis will help people help you and it's great to hear that you're going to look into getting one. Also coming up with your own coping mechanisms for the anxieties that come with it helps too and I'm sure you already have them.

First. I relate to what you have written- TOO well. I also excelled at art, and if people ask how I can "see" something or visualize raw materials assembled in my head or take apart something in my head I compare it to having my very own google image search or video. If this is why I think differently, it wouldn't make me upset. and I wouldn't want to be medicated with anything. I couldn't imagine thinking like someone else without those abilities even if it would give me other perks. I do like being me.

I have a whine in WYP about fragrances and thankfully, my spouse fully understands and knows I am not trying to slight him or guilt him into leaving if I walk out of a theater or restaurant because I am ill due to a patron showering in perfume. More and more public spaces here are fragrance free thankfully.

My mom calls my "art brain" a double edged sword, so on one hand I can do things other people can't, on the other I have anxiety to deal with and if it runs out of control OCD behavior. My spouse loves that I am honest and blunt. if I tell him "unless you find a second hand pony. don't buy me a birthday present" it's exactly what I mean. he doesn't have to worry about me saying one thing and doing another. 

[autieluna]

I'm not caught up here because there's a lot of text and my energy is low on waking up, but I wanted to add that I have regression issues in my skills and 'functioning.' Though, this definitely ties into me having PTSD, + time spent working too hard to do basic stuff without enough help and/or spent trying to act neurotypical leads to burnout.

Some info on Burnout! http://neurodivergentabusesupport.tumblr.com/post/132224399785/ive-played-allistic-for-so-long-that-i-dont-even#notes

I am growing less independent over the last couple of years because I had no support for so long and my brain + body are basically just exhausted. I can't go out on my own, cook for myself, need help washing my hair most of the time etc. and most recently it's getting very hard to read difficult or long things. I had to drop out of school for now a bit ago as well to focus on recovering from burnout. 

Don't worry though, that isn't likely to happen unless you're in a situation for many years forcing NT behavior regularly or otherwise being treated very badly for a sustained time. (for me, all of childhood+teenage-hood.)

I may add something when I get around to reading the rest of the thread, but theres so much great discussion here!

[Princess Lala]

Have to agree about it being a positive thing and how passionate we can be with art! Art and music have always been one of those things I have always been passionate and pretty decent at! I was second chair in flute/ piccolo and was part of the Gera student art exchange program! Art can really help me relax and unwind, my therapist insisted i try music as a way to manage my symptoms and i fell in love with the flute and even picked my first official band flute in  fifth grade! Doubled with my synesthesia, i really relax to japanese art most of all- especially music. I literally visualize certain colors with certain notes!

[Taffeta]

I genuinely think we need an autistic pony club...

I am envious of you artistic peoples. I write. I write a lot, and I love writing. But I can't draw :-/ I have synesthesia, tho, and I connect to music a lot.

I also love Japanese too. <3. It has such a nice melodic rhythm - but I think my obsession with languages comes from that drive to communicate with the world somehow...

Hoping if I get a chance this summer to begin Mandarin or Korean...or both. I've done a little Mandarin and two of my flatmates speak it, but I want to do Korean too...

(P.S, in all the negatives with the world and autism, a nice story. My flatmates, two of them had birthdays around this week, so they had a joint party on Saturday. I don't really like parties, but they wanted me to go, so I did. It was only a small get-together. They know about my ASD, and that I dislike stuff like that. Yesterday one of them gave me a card to thank me for being there. That meant something to me - that she appreciated my effort and I appreciated her understanding.)

[Tak]

I'm not caught up here because there's a lot of text and my energy is low on waking up, but I wanted to add that I have regression issues in my skills and 'functioning.' Though, this definitely ties into me having PTSD, + time spent working too hard to do basic stuff without enough help and/or spent trying to act neurotypical leads to burnout.

Some info on Burnout! http://neurodivergentabusesupport.tumblr.com/post/132224399785/ive-played-allistic-for-so-long-that-i-dont-even#notes

I am growing less independent over the last couple of years because I had no support for so long and my brain + body are basically just exhausted. I can't go out on my own, cook for myself, need help washing my hair most of the time etc. and most recently it's getting very hard to read difficult or long things. I had to drop out of school for now a bit ago as well to focus on recovering from burnout. 

Don't worry though, that isn't likely to happen unless you're in a situation for many years forcing NT behavior regularly or otherwise being treated very badly for a sustained time. (for me, all of childhood+teenage-hood.)

I may add something when I get around to reading the rest of the thread, but theres so much great discussion here!

I'm in a bit of the same situation. My parents and I had a fight when I was 17 that ended with me leaving the house. No contact for ten years. Not a good ten years. Ended up having my daughter and I have to take care of myself so I can be the best mom possible. My parents didn't really patch things up, but she's their only grandchild. 14 concussions and all the time spent pretending to be okay, to understand,  and to fit in left me pretty exhausted.

Post Merge: March 14, 2016, 02:09:30 PM

I genuinely think we need an autistic pony club...

I am envious of you artistic peoples. I write. I write a lot, and I love writing. But I can't draw :-/ I have synesthesia, tho, and I connect to music a lot.

I also love Japanese too. <3. It has such a nice melodic rhythm - but I think my obsession with languages comes from that drive to communicate with the world somehow...

Hoping if I get a chance this summer to begin Mandarin or Korean...or both. I've done a little Mandarin and two of my flatmates speak it, but I want to do Korean too...

(P.S, in all the negatives with the world and autism, a nice story. My flatmates, two of them had birthdays around this week, so they had a joint party on Saturday. I don't really like parties, but they wanted me to go, so I did. It was only a small get-together. They know about my ASD, and that I dislike stuff like that. Yesterday one of them gave me a card to thank me for being there. That meant something to me - that she appreciated my effort and I appreciated her understanding.)

Nice story! I like the club idea, too.  I have synesthesia, too. I dance, write, and sing.

[ringwraith10]

We had a very long discussion about this in the WYP board a while ago, and we did come to a consensus that there is a large number of us in the collecting community who are also on the autism spectrum. I do want to note, however, that it is not technically correct anymore to use the term "Asperger's syndrome" and many people who were diagnosed with Asperger's as children have been re-diagnosed later in life as being on the autism spectrum. Some people can be offended by being labeled as "Asperger's" because of the controversial history that the diagnosis has had (not to mention the controversy surrounding the man it was named after).

(P.S, in all the negatives with the world and autism, a nice story. My flatmates, two of them had birthdays around this week, so they had a joint party on Saturday. I don't really like parties, but they wanted me to go, so I did. It was only a small get-together. They know about my ASD, and that I dislike stuff like that. Yesterday one of them gave me a card to thank me for being there. That meant something to me - that she appreciated my effort and I appreciated her understanding.)

That is so sweet! My family often refuses to understand me and my social needs, even though my mother is a trained counselor with tons of reading on autism under her belt (having had autistic children) and my brother has been diagnosed with ASD. I also seem to have trouble keeping friends since they (apparently, I guess?) want me to be more social.

[Taffeta]

We had a very long discussion about this in the WYP board a while ago, and we did come to a consensus that there is a large number of us in the collecting community who are also on the autism spectrum. I do want to note, however, that it is not technically correct anymore to use the term "Asperger's syndrome" and many people who were diagnosed with Asperger's as children have been re-diagnosed later in life as being on the autism spectrum.

This is a personal perspective, but I am Asperger's and I identify as such. In the UK, the way in which people with autism are generally viewed has, in my opinion, taken a negative hit from this desire to respectrify (yay, new word) the condition into one broad diagnosis.

People with ASD are all different in minute and broad ways.

When the Autism Act here was passed, there was a lot of friction and protest about the omission of the term Asperger's Syndrome and it's effective removal from legal status. The NAS (National Autistic Society) here - the people I know from it, anyway - continue to deal with the term and recognise it, because Asperger's Syndrome and HFA are not the same as severe Autism and require different support needs.

My students at the college also suffered somewhat from the blanket mentality of 'autism' rather than breaking it down into what type of ASD they had. It meant that some of my not so well informed colleagues thought one rule applied to all, rather than recognising the nuances in the condition. This in spite of the fact all my students were very unique from one another.

I have yet to meet anyone in real life with Asperger's Syndrome as a diagnosis who was offended by that terminology, but I've met a lot of frustrated kids and confused adults because the separated diagnosis has disappeared. It also means things like the autism friendly screenings at cinemas now apparently apply to all of us, which they don't...and thus have created that issue of offending people with ASD by giving the impression we should be segregated from "normal people" in cinemas.

I don't see it as the name of a person but a way to differentiate a type of Autism that is different from more severe types of the condition. We are generalised a lot already, so if Aspie is no longer acceptable for whatever reason, another term needs to exist to replace it imo. (And IMO HFA is not the same thing.)

[Tak]

Any sort of mental or emotional diagnosis is looked down upon in America. That's aside from how hard it is to find someone who doesn't just want to throw meds at you.

[Sparkle Pony]

My brother has been diagnosed with Asperger's, I can't remember when because I was very young at the time.  He has a lot of trouble focusing and doing work he finds uninteresting, which has made school difficult for him.  I don't think I have Asperger's personally even though my brother does and I am almost certain some of my other family members do too.  I think I have a few of the traits though, but then again I think many people would exhibit at least a few.  People with Asperger's certainly like to collect things though, my brother got inspired by my pony collection and started collecting Pokémon cards a few months ago.  It has that certain appeal I guess!

[FantasticFirefly]

I am envious of you artistic peoples. I write. I write a lot, and I love writing. But I can't draw :-/

and, on the flip I truly envy writing skill.   I have the essence of how I feel or the detail, or fact I want to communicate and the effectiveness of that gets lost between my mind and pen/keyboard. like this song "I turned to look and it was gone, I cannot put my finger on it now" So I do wish I could be like my friends who could capture their feelings, or explain facts in writing in a fraction of time without the struggle. I found recently that printing out my work, cutting it up and laying it in front of me helps me to visualize better and edit. it's far from perfect though.  This is why I have written material for a pony blog that's been a WIP for 7+ years.

My brother has been diagnosed with Asperger's, I can't remember when because I was very young at the time.  He has a lot of trouble focusing and doing work he finds uninteresting, which has made school difficult for him.  I don't think I have Asperger's personally even though my brother does and I am almost certain some of my other family members do too.  I think I have a few of the traits though, but then again I think many people would exhibit at least a few.  People with Asperger's certainly like to collect things though, my brother got inspired by my pony collection and started collecting Pokémon cards a few months ago.  It has that certain appeal I guess!

Yes, this is why I worry I would waste someone's time. I think everyone shares a few traits, or quirks in common with my diagnosed friends. I have many, and felt like I was dropped off on some alien world, but even there.  Reading about the human condition is fascinating. most people on this earth deep down feel alone, misunderstood and that they fake fitting in. it's how marketers get people to spend money on crap to fit in. "“Too many people spend money they haven't earned, to buy things they don't want, to impress people that they don't like.”
― Will Rogers

[Koudoawaia]

It used to be noone else in my family had it either. My second cousin's very young son was just diagnosed with it recently though. I have to admit I'm really envious of people that get diagnosed as children so they can grow up getting whatever help they may need with it. =P I hate how all the books assume that everyone gets diagnosed as children too. That is simply not so. The Asperger forums I've been on have also been an irritating disappointment because it mainly focused on children who have it and the parents of children who have it and not so much on adults who have it. Bah. I'm also fine with the Asperger 'label' or whatever. It's Aspie I have a problem with because I hate how that word sounds which is another trait; hating how certain words sound.

[Strawberry Swirl]

Yeah there's a good point to make too! Even though a lot of us were diagnosed with Asperger's, some of us don't identify that way anymore. Y'know, like me. It's always ok to ask.

I'm glad to have a family that understands too- my mom and I have a lot of similar diagnosis-es, so that's probably a big help. She explains pretty well to other people why I don't do well with crowds or loud people, or being social for a long time. Before I had to drop out of school she said that when I graduated, she'd tell people to send cards with money inside instead of having a full-blown party.

I was relieved. Of course that never happened but the fact that she always takes into account what *I* need instead of what's the norm is something I'll always be thankful for!

[Artemesia's Garden]

I have some traits...