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TiikeriFox
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28 Sep 2011, 10:03 pm

A while ago, I posted a survey for my health course for year 12. Now, as part of research project, I need to do another survey on autism and Asperger's. In replying to this thread, you will be agreeing to having your answers used in a graded assignment, though all responses will be anonymous. No names, usernames or personal details will be given to any secondary source if your participate.

I have one survey for people with autism/Asperger's, and one for parent's of children with these disorders.


For people with Autism or Asperger's:
Have you ever struggled to live with your disorder?

Have your sibling(s) struggled with having someone with an ASD in your family?

Did your parents ever struggle with accepting your disorder?

Have you ever felt disconnected from the world?

Were you able to find a way to connect with the neurotypical world?

What were some of these ways?

Did you ever have to seek professional help to cope with your disorder?

What were some of the things you were told?

What have you done in order to better live with your disorder?

Have you attended any organisations that help people with an ASD?



For parents of children with autism or Asperger's:
Did you struggle with accepting your child’s diagnosis?

Have any of your other children struggled with having someone with an ASD in your family?

Have you ever felt disconnected from your child?

Were you able to find a way to connect with your child?

What were some of these ways?

Did you ever have to seek professional help to cope with your child’s disorder?

What were some of the things you were told?

What have you done in order to better live with your child’s disorder?

What have you done for your child to make it easier for them to live with it?

With your child, have you attended any organisations that help people with an ASD?



Fnord
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28 Sep 2011, 10:25 pm

TiikeriFox wrote:
For people with Autism or Asperger's:

Have you ever struggled to live with your disorder?

No. I have struggled with intolerant and impatient people who don't understand ASD or Autism in general.

TiikeriFox wrote:
Have your sibling(s) struggled with having someone with an ASD in your family?

Afaik, I am the only member of my family with an AS diagnosis, and no one in my family knows that I have AS.

TiikeriFox wrote:
Did your parents ever struggle with accepting your disorder?

No. They struggled with accepting me.

TiikeriFox wrote:
Have you ever felt disconnected from the world?

I have often felt socially disconnected.

TiikeriFox wrote:
Were you able to find a way to connect with the neurotypical world?

Yes.

TiikeriFox wrote:
What were some of these ways?

Behaving like an Alpha helps me get along with men, and a good sense of humor helps with women.

TiikeriFox wrote:
Did you ever have to seek professional help to cope with your disorder?

Yes.

TiikeriFox wrote:
What were some of the things you were told?

"You don't have Asperger's Syndrome because you don't wet the bed or torture animals."

TiikeriFox wrote:
What have you done in order to better live with your disorder?

Given up on being accepted by people that I like.

TiikeriFox wrote:
Have you attended any organisations that help people with an ASD?

No. I have no interest in yet another hierarchical, cliquish organization that takes my money and tries to tell me how I am supposed to think, talk, and behave.


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28 Sep 2011, 10:31 pm

Before I answer questions Ill just say that Im self diagnosed (just in case it makes a difference in your project)

For people with Autism or Asperger's:
Have you ever struggled to live with your disorder?

Im not 100% sure what you are trying to ask. My guesses are that youre asking if I had a hard time accepting the disorder or if I have a hard time getting through life (I cant really tell what you mean). If Im meant to answer the first question my answer is: since learning about the disorder Ive has a bit of a confusing time because Im seeing things from a different perspective. If Im meant to answer the second question my answer is: I have very few connections to other people which makes some things complicated as well as a hard time getting outside which makes it hard to accomplish everyday tasks sometimes.

Have your sibling(s) struggled with having someone with an ASD in your family?

Everyone in my family has some ASD traits but no one has been officially diagnosed.

Did your parents ever struggle with accepting your disorder?

My parents were unaware of the disorder until recently. When I talk to them about it they flip flop between understanding and mocking it.

Have you ever felt disconnected from the world?

Very much so. I've never felt like I could relate much to people around me. When Ive tried to communicate what I feel no one seems to get it.

Were you able to find a way to connect with the neurotypical world?

To some degree. I do work part time and am in a relationship. The interactions are unusual though.

What were some of these ways?

People Im around gradually learn to expect the differences.

Did you ever have to seek professional help to cope with your disorder?

Im dealing with some of the related issues seperately but have yet to mention aspergers.

What were some of the things you were told?

At the moment the person Im seeing seems clueless and is referring me to someone else.

What have you done in order to better live with your disorder?

I just keep working at the individual issues that are causing problems and doing what I can to work through them (via internet, doctors.. or other)

Have you attended any organisations that help people with an ASD?

No, but I would love to



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28 Sep 2011, 10:52 pm

For people with Autism or Asperger's:
Have you ever struggled to live with your disorder?

No, it doesn't make me suicidal...

But if you mean have I struggled to accept it - not at all, it was just a description of me when I was diagnosed.

If you mean have I struggled with having a normal life - I've absolutely had major struggles in my life to the point where I'm not even trying to have a normal life.

Have your sibling(s) struggled with having someone with an ASD in your family?

No, back when we were kids I was undiagnosed and then it was cool for her and her friends to make fun of me... now that I'm diagnosed, she's in college and not around me.

She's been irritated at me for things that are AS traits though.

Did your parents ever struggle with accepting your disorder?

Only in accepting that it is not anxiety that is causing me to act this way.

Have you ever felt disconnected from the world?

Very. At the moment I feel trapped in a bubble, unable to escape to somewhere I can have any sort of interactions with the rest of the world.

Were you able to find a way to connect with the neurotypical world?

I have no interest in connecting to most of the world. I get along well with geeks. Most of them are NTs or BAP, but I can be associated with them. Much of the world, well I don't see the point in connecting to them. I want friends, yes, but I don't want to be anyone overly social or any of that.


What were some of these ways?
The one thing that might be relevant to say here is that I'm obsessed with not hurting anyone.


Did you ever have to seek professional help to cope with your disorder?

Yep, that's why I got a diagnosis.

What were some of the things you were told?

Write down when you eat and sleep and try to make a schedule around that specifically, as I have issues noticing when I'm hungry. Keep a set of things for sensory overload on me constantly (but that was after I already was doing that).

What have you done in order to better live with your disorder?

Figured out things that help me deal with each hypersensitive sense, and carried them with me.

Gotten a weighted blanket.

Not hidden my disability from others.

Have you attended any organisations that help people with an ASD?

Yes



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29 Sep 2011, 2:30 am

Quote:
Have you ever struggled to live with your disorder?



No. No matter what I do, I continue to both be alive and have an ASD.
It can make things difficult, though.

Quote:
Have your sibling(s) struggled with having someone with an ASD in your family?


Nope.
Quote:
Did your parents ever struggle with accepting your disorder?


No, but my father gets confused about the difference between "autistic" and "lazy/being difficult on purpose".

Quote:
Have you ever felt disconnected from the world?


All the time.
Quote:
Were you able to find a way to connect with the neurotypical world?


I barely know what "connected" feels like.
Quote:
What were some of these ways?


See above.

Quote:
Did you ever have to seek professional help to cope with your disorder?


Only to get a diagnosis.
Quote:
What were some of the things you were told?


Nothing that I couldn't figure out for myself.

Quote:
What have you done in order to better live with your disorder?


Not died.
And worked with my brain instead of fighting against it.

Quote:
Have you attended any organisations that help people with an ASD?


No.


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cathylynn
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29 Sep 2011, 2:35 am

struggle?

have lost friends and lost a professional career because of AS

siblings

they just think i'm weird and too quiet. we get along okay. i'd like to see more of them, though. i think i bore them.

parents

dad is dead. i think he had AS. it might have been a relief to him to know about it. haven't told mom. diagnosed myself at 55. see no need for an official diagnosis.

disconnected

no, i'm a giver. there's always someone who will take - even if it's just volunteer work.

connect

i like people. i like helping people. i like understanding people. people are a special interest of mine. i connect with a few people. i'm married. i'd like to connect with more.

ways

i'm very bright intellectually. IQ 144. i love to learn and have a wide variety of interests. i can usually find something to chat with someone about for a couple of minutes, even if it's just pets or what kind of music they like.

spending half of my life in school, where people are more accepting than in the business world.

professional help

psychiatrists see for other things don't know about my AS. the only way i will bring it up is if i need to get disability. i found out i have AS when i researched it because my nephew was diagnosed.

told

nothing

better live

i've read every self-help book there is. i've learned to communicate in an NT fashion, except i still process social info slowly. i've learned not to be over-honest from the school of hard knocks. same way i learned not to stare.

organizations

no. i am "in the closet" with everyone except my closest family and one friend. i love wrong planet.



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29 Sep 2011, 2:58 am

Quote:
Have you ever struggled to live with your disorder?

Only when interacting with NTs.

Quote:
Have your sibling(s) struggled with having someone with an ASD in your family?

Not really.

Quote:
Did your parents ever struggle with accepting your disorder?

Yes. Numerous attempts to 'fix' me.

Quote:
Have you ever felt disconnected from the world?

The term 'world' is vague. I have never felt disconnected from the earth itself. :lol: I have felt disconnected from society though, yes.

Quote:
Were you able to find a way to connect with the neurotypical world?

I've always had NT friends, so I suppose?

Quote:
What were some of these ways?

I'm not sure.

Quote:
Did you ever have to seek professional help to cope with your disorder?

I didn't personally, but my parents did.

Quote:
What were some of the things you were told?

Errr... Strict diets, mainly. No sugar, no caffeine, things like that. I was also taking some sort of pill for a short while, I forget what it was.

Quote:
What have you done in order to better live with your disorder?

Nothing.

Quote:
Have you attended any organisations that help people with an ASD?

No.



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29 Sep 2011, 3:22 am

Have you ever struggled to live with your disorder?

Yes. It took me a little while to accept it and live with it and start looking at myself differently. Plus we moved so that helped because I got a lot less bullying and I was left alone. I even started to embrace the fact I was different when I was 14 and just be proud of it.

Have your sibling(s) struggled with having someone with an ASD in your family?

Maybe. But they learned to live with it and tell their friends to get over it because that was just me if I said anything wrong to their friends. I am sure they told their friends about my condition so they understand and not think I was a b***h or something or that I didn't like them.

Did your parents ever struggle with accepting your disorder?


I don't think so but my anxiety, maybe. They get mad at me for it.

Have you ever felt disconnected from the world?


Yes

Were you able to find a way to connect with the neurotypical world?

Sure, just find people that accept me and aren't mean to me.

What were some of these ways?


My parents moved to another state when I was 13 and that was a start. I even went to a few adult groups before they all closed. But they were all weird too and I seem to do better with weird people than with normal people. I prefer weird people. My husband is weird too so I like him a lot.

Did you ever have to seek professional help to cope with your disorder?


Yes.

What were some of the things you were told?


I am not sure what this means but I'll take a wild guess. My mom told me I had Asperger's and that my mind works differently and I process things different and hear things different. I also have a different learning style. She even use examples of what is AS when I have an episode like not liking a surprise or a change or when I misunderstand something or how I like things organized or planned or else I don't know what to do. But she also told me I had it very little.


What have you done in order to better live with your disorder?


Read about AS and see what I needed to work at, listen to other people and apologize for everything every time they get offended or say I was rude. Start treating others the way I wanted to be treated, don't do stuff to people I wouldn't like done to me. Assume they would feel the way I would feel. Try and change some of my quirks by not doing it around kids at school where they can pick on me such as holding the scissors right and pretending to not like stuff they don't like. Try and control, my body better so I am not labeled as weird and a show off. Avoiding the judgmental kids who thought wrong of me for my odd behavior. If I had to be around them, I tried acting normal as possible and boy it was hard work and stressful. Plus I didn't say a word around them because they hated the way I spoke. I also learned to not talk about my obsessions so much and now I hardly do. Plus I gave up on friends.

Have you attended any organisations that help people with an ASD?

Nope.

EDIT: Do autism groups count as organizations to help people with ASDs? If so, then Yes I have.



Last edited by League_Girl on 29 Sep 2011, 1:35 pm, edited 1 time in total.

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29 Sep 2011, 3:40 am

Hope this is the kind of thing you were looking for, if you need me to elaborate pm me or something.


For people with Autism or Asperger's:
Have you ever struggled to live with your disorder?

I struggled to accept the diagnosis once I got it. I don't really think about it that way, but guess you could say I struggle. It's hard having the desire to be sociable and friendly while struggling to do so. Not being able to be efficient and effective in social things makes life in this overtly social world difficult at times.

Have your sibling(s) struggled with having someone with an ASD in your family?

Not that I've particularly noticed with me. But my siblings struggled with my autistic brother when we were younger because of how some of his sensory phobias affected going out as a family.

Did your parents ever struggle with accepting your disorder?

No they were the one's who first suggested it really. What they struggled with was my desire to get officially diagnosed, but after than happened and I told them it was really a not event.

Have you ever felt disconnected from the world?

Yes. But I think this has primarily been to do with depression and posttraumatic stress than aspergers.

Were you able to find a way to connect with the neurotypical world?

Sometimes

What were some of these ways?

Volunteering has always been useful for me, particularly working with people at least 5-10 years older than myself. I am less anxious when I am at least in part focussed on a task instead of completely on trying (and usually failing) to be social.

Did you ever have to seek professional help to cope with your disorder?

Not really. Not directly anyway, maybe a bit to do with anxiety and so forth. But generally professionals weren't interested (this was before I was officially diagnosed).

What were some of the things you were told?

That autism is incurable so why would I want to have it. That and that my social problems come from undocumented brain damage. (Not really answering your intended question I know, I just find it all little amusing now :P)
What have you done in order to better live with your disorder?

Have you attended any organisations that help people with an ASD?

I was diagnosed by two clinical psychologists at my state autism association. I go there every so often to borrow books from the library and have just joined a consumer committee advising the government on Autism issues.


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29 Sep 2011, 3:57 am

For people with Autism or Asperger's:
Have you ever struggled to live with your disorder?

I was only recently diagnosed, and at the time I had come to terms with it. When I first realized I might be autistic, I struggled a lot with the idea and then filed it away without much further thought.

In terms of struggles because of it, I've had quite a few. I've had significant difficulties trying to live independently, hold a job, get a degree, and so on.

Have your sibling(s) struggled with having someone with an ASD in your family?

I don't know. I think my sister created far more struggle for anyone than I did. She's potentially bipolar, and potentially has a cluster B personality disorder. Given the balance of power when we were growing up, she didn't really have much in the way of "struggling" until I left home and her father took out all the abusiveness he directed at me on her instead. The closest my sister has come to acknowledging my ASD is telling me that I am "required" to adapt to her, to act "normal" so she can figure out what I am thinking, and I told her that wasn't going to happen.

Did your parents ever struggle with accepting your disorder?

When I told my mother I thought I had it, her immediate response was, "That makes a lot of sense." Of course, I was 41 at the time.

Have you ever felt disconnected from the world?

I'm not sure what that means. I do know that I don't feel particularly connected to current events (I rarely remember to check the news) and I know that even when I interact with people, few become more than friendly acquaintances. Actual friendships have not been very common over the years. I feel like often the world is at arm's length, and I am usually comfortable with that.

Were you able to find a way to connect with the neurotypical world?
What were some of these ways?

My most successful work was freelance writing. The writing itself was generally well received. I am not sure if that qualifies as a connection, but I admit that I am not sure what a connection is or whether I am feeling one at any given time. I think I have at times (generally positive occasions), but I am not sure there was a real connection so much as I was able to discuss my interests and say what I wanted to say.

Did you ever have to seek professional help to cope with your disorder?

I sought professional help for a diagnosis, but most of the help I've been receiving was for depression.

What were some of the things you were told?

I haven't really been told anything. This therapist once told me that sensory defensiveness, intense focused interests, lack of displayed emotion, re-enacting a movie scene as "pretend play", and I forget the other elements had nothing to do with an ASD diagnosis. She's not particularly educated on the condition and once my time with her ends, I may approach a different clinic that has better mental health support.

What have you done in order to better live with your disorder?

Cut down on a lot of overloading sensory stimuli, spend most of my time alone, not interacting with people. Keep my routine going every day.

Have you attended any organisations that help people with an ASD?

No.



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29 Sep 2011, 4:40 am

TiikeriFox wrote:
Have you ever struggled to live with your disorder?


sometimes.

TiikeriFox wrote:
Have your sibling(s) struggled with having someone with an ASD in your family?


we all have strong aspie traits manifesting differently.

TiikeriFox wrote:
Did your parents ever struggle with accepting your disorder?


my NT dad did. not so much my aspie mother.

TiikeriFox wrote:
Have you ever felt disconnected from the world?


mostly, even when i am forced into contact with it, i feel like the negative pole of a magnet being forced to bond with another negative pole, it is always forced. i have very little rapport with other people. this world is a hostile place. i place most of my consciousness into my alternate [fantasy] world which is much more amenable to me.

TiikeriFox wrote:
Were you able to find a way to connect with the neurotypical world?


no. see above paragraph.

TiikeriFox wrote:
Did you ever have to seek professional help to cope with your disorder?


i've seen at least 5 different shrink-types in my decades on earth, each for several years 'cept for the last one who just definitively dx'd my AS and other comorbids.

TiikeriFox wrote:
What were some of the things you were told?


"sorry, i can't help you." "there are prescriptions i can give you which can take the edge off your problems, but nothing definitively therapeutic." but from reading some provider notes, more was left unsaid to me, such as the fact that i was dx'ed earlier in life with OCD, tourettes, avoidant personality disorder, auditory processing disorder, schizotypal/schizoid personality disorder, etc. these are just the ones i remember reading in the provider notes.

TiikeriFox wrote:
What have you done in order to better live with your disorder?


become a hermit. learn to love ME no matter what! be my own best friend. talk to myself and keep my own company in the barren days and long dark nights. collect and listen to lots of music as well as electronic gizmos to distract me from my various troubles.

TiikeriFox wrote:
Have you attended any organisations that help people with an ASD?


last march i found a local aspie meetup group, this was a revelation in that finally i met people like myself, i felt human after all, after decades of waiting. i love these guys! :heart:



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29 Sep 2011, 5:21 am

Have you ever struggled to live with your disorder?
Yes, all the time. I hate every minute of it, but I can't think too deeply about it otherwise I will drive myself into an early grave.

Have your sibling(s) struggled with having someone with an ASD in your family?
Yes, I take up all the attention as an adult, and my brother doesn't get a look in, and so has become depressed because of me.

Did your parents ever struggle with accepting your disorder?
I'm not sure. They have been good support, ever since I was diagnosed.

Have you ever felt disconnected from the world?
No - the world just makes me highly anxious.

Were you able to find a way to connect with the neurotypical world?
I do quite automatically, because it's something I had to do all through my life (I was brought up in an NT family, went to mainstream school, and I now have NT friends).

What were some of these ways?
I have taught myself to understand people, now it just comes automatically.

Did you ever have to seek professional help to cope with your disorder?
Yes, since I was 4 I had to have extra support at school, right up until I was 16. Now I'm getting extra support with finding and keeping employment, but I can't seem to get into any counselling because they say I don't need it (which I do). It's because I slip between NT and Autism.

What were some of the things you were told?
That I must accept I have AS properly. I've semi-accepted it, but I can't completely verbally accept it. I cannot look at somebody in the eye and say, ''I have got AS''. I can't even pronounce the actually word ''Asperger's'' because I've never said it myself in my life!

What have you done in order to better live with your disorder?
Doing voluntary work helps me because I've met some people there, of all different ages, and they are NTs and they understand me. The more I'm with NTs, the more better I get. Practice makes perfect.

Have you attended any organisations that help people with an ASD?
No. Back when I was a teenager I did attend this youth centre for teens with disabilities, which I thought might help, but it didn't because most of the teens there were low-functioning (not just Autistic, but other conditions aswell), and I got spoken to by the NT helpers as though I was low-functioning aswell, which I wasn't. I think if I went back there but was a helper, I would probably fit in much better with the other helpers, more than the people with the disabilities. I function quite well socially, but I just get highly anxious about everything.


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29 Sep 2011, 10:37 am

Quote:
Have you ever struggled to live with your disorder?


What do you mean by that?

I have been seriously depressed, to the point where I skirted the borders of being suicidal. But it's never been my autism that made me miserable - it's been abuse from others.

My parents fostered two severely abused cousins of mine when I was preschool-aged, and they sexually abused me. (I'm pretty sure a non-autistic kid in that situation would've been just as likely to be abused.) Then in my first school my teachers told me that God would send me to Hell for my misbehavior (mostly disobeying teachers and hiding underneath furniture and such). In my second and third schools, the teachers were nice but a group of bullies systematically made my life unbearable.

My being autistic has made me a target in some circumstances, but I see this as no different than the way being gay can make you a target (except more pervasive because autism is harder to hide). The fact I am bullied and abused does not indicate something wrong with me, it indicates something wrong with the people who bully and abuse me.

Quote:
Have your sibling(s) struggled with having someone with an ASD in your family?


I asked my brother (13 years old):

"Sometimes, but I think it also has opened my eyes and I think I'm a better person for it."

Quote:
Did your parents ever struggle with accepting your disorder?


They never had trouble accepting me for who I am. They didn't know autism, but they knew quirky, stubborn, creative, intense, disorganized, gifted, weird - all my different traits that make me unique - and they loved the whole package.

They had a lot of trouble accepting a label for me, though, mainly because they didn't see any of my differences as 'something wrong'. My first school pushed very hard for me to get an ADD diagnosis (this was back in DSM-III-R time) because they figured if I got Ritalin it would somehow magically make me NT (which it doesn't do even for actual ADHD kids). The whole experience really soured us to labeling for quite some time.

As a homeschooled 13 year old, I discovered autism first as an interesting subject to read, and only after several months did I start to think it described me. It was only once I taught my parents about the neurodiversity movement that they were willing to consider that I might be autistic, because they could see autism wasn't necessarily a bad thing.

Quote:
Have you ever felt disconnected from the world?


The world? Occasionally. Other people? Often.

If I read a certain kind of writing, I get what I call the [url=http://abnormaldiversity.blogspot.com/2011/07/floaty-feeling.html]floaty feeling[url] which involves feeling disconnected from the world.

But I suspect what you're getting at more is feeling disconnected from other people. I often feel the experience of realizing I'm the outlier in the group. But there's a difference between being an outsider and being an outlier, which I know because I've felt both. An outlier can belong even though they're different from all the others.

Quote:
Were you able to find a way to connect with the neurotypical world?

What were some of these ways?


Sort of, depending on your classification of NT. I relate best to people who are kind of different from the norm, even if they're not autistic. In particular I've felt most accepted among highly intelligent people who share my interests, such as at university or at the young writer's camp I attended.

My first good friend in several years is NT, but she's not 'normal' because she has CP and uses a wheelchair. And like me, she's a psychology major at university.

I've found my best tactic isn't to try to change myself to fit the setting. Every time I've tried that, it's been a miserable failure. What works is to make sure I find the right setting to fit into, one that I can fit myself to without too much suffering.

Quote:
Did you ever have to seek professional help to cope with your disorder?


I have sought professional help many times for PTSD and gotten a mix of good counseling, mediocre couseling and bad counseling. But I've rarely sought help for autism.

The times I have gotten autism-related help are:

* One disastrous attempt at counseling with a counselor experienced with autism, which consisted of me spending an entire session arguing with her over why I didn't think disability meant I deserved intolerance from others (she was a hard of hearing woman who felt it was her duty to conform as much as possible to hearing standards, and when people physically attacked her because she didn't hear them and they thought she was ignoring her, that was the fault of her disability rather than the fault of people who assume everyone is like them unless proven otherwise).
* Participating in social groups for developmentally disabled people, which was really fun but I couldn't really share my intellectual fascinations with them because they were mostly cognitively disabled people.
* Getting accomodations at university such as room alone for exam and notetaking.
* An acquaintance of my Mom's suggested I try the Snoezelen room at her workplace (a place that has programs for young children and disabled children), and I've been popping in to use it occasionally when I'm feeling stressed out or overloaded.

I'm also planning to seek out occupational therapy one of these days.

Quote:
What were some of the things you were told?


By who?

My teachers told me I was defiant, spoiled, a danger to other kids (they assumed all sexual abuse survivors became abusers), going to Hell, stupid, lazy, etc.

My classmates told me I was a psychopath, a nerd, stupid, bad, a waste of space, etc.

My parents told me I was gifted, unusual, kindhearted, a dreamer, a survivor, idealistic, strong, etc.

Doctors have told me I have PDD NOS, PTSD and asthma.

Quote:
What have you done in order to better live with your disorder?


Mostly stuff to avoid putting myself in situations I won't be able to handle, such as figuring out ways to avoid crowds or cope with them better.

I've also gotten very good at explaining autism so I can get people to be more understanding of me.

Quote:
Have you attended any organisations that help people with an ASD?


I don't like most autism-specific organizations. They seem to be mostly about whining 'woe is me, my chils is autistic' and trying to convince the world that we're horrible burdens that need to be eliminated. My favorite disability organization that I've deal with is the Association for Community Living, because they believe that you don't need to have certain abilities in order to belong. Instead of focusing on trying to find a cure or prevent disabilities, they focus on trying to increase acceptance.

The only 'mainstream' autism society that seems to have a similar attitude is the National Autistic Society in Britain.



Dgosling
Snowy Owl
Snowy Owl

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Joined: 31 Dec 2010
Age: 23
Gender: Male
Posts: 131
Location: Utah

29 Sep 2011, 10:41 am

Have you ever struggled to live with your disorder?
Yes, but not that much.

Have your sibling(s) struggled with having someone with an ASD in your family?
Sometimes but rarely

Did your parents ever struggle with accepting your disorder?
Not really it actually explained me.

Have you ever felt disconnected from the world?
Yes, but in a good way.

Were you able to find a way to connect with the neurotypical world?
Yes, Video Games

What were some of these ways?
video games
forums
people understanding [Never had been bullied about how i am and everyone is actually nice the only time i do get "bullied" the people are just messing around]

Did you ever have to seek professional help to cope with your disorder?
Not really

What were some of the things you were told?
??

What have you done in order to better live with your disorder?
504/soon to be IEP

Have you attended any organisations that help people with an ASD?
No, i don't really know any



OJani
Veteran
Veteran

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Joined: 23 Feb 2011
Age: 46
Gender: Male
Posts: 2,524
Location: Hungary

29 Sep 2011, 2:16 pm

For people with Autism or Asperger's:

Have you ever struggled to live with your disorder?
I was struggling with maintaining friendships and acquaintances. Most of the time I felt I had to put up with being inept and undesired, even with geeky/nerdy/quirky persons, always suffering some condescension. And yes, sometimes I'm too blunt.

Have your sibling(s) struggled with having someone with an ASD in your family?

Me and my twin sister could get along with each other quite well for many years, until she was more and more affected by bipolar (diagnosed only last year).

Did your parents ever struggle with accepting your disorder?

I'm going through the evaluation process now, and my parents seem to be accepting that I might have something going on. For months they were doubting it after I told them I might have AS, but that's understandable.

Have you ever felt disconnected from the world?
Actually, I feel it frequently and have been consciously making efforts to loosen my isolation from the world ever since I knew I have difficulties, dating back to my highschool years but more prominently the Uni. Anyway, I'm not a maximalist in this respect, and never was. Overall, I've come to realize that if I indulge too much myself in my own world eventually I have to do much more or pay too high a price for making up for what I've missed because of it.

Were you able to find a way to connect with the neurotypical world?
Yes, although only to a rather limited degree.

What were some of these ways?
Shared interests and looking for attributes in people that I can describe now as eccentricity, nerdyness, geekyness, although back then I was just looking for traits in people that I have. I've learned to make small talks during the decades of my life (to a degree). I always wanted to appeal to people as being a kind and valuable person, despite failing frequently.

Did you ever have to seek professional help to cope with your disorder?
Well, it occurred to me only recently that I should seek for professional help for my repeated failures making relationship with the opposite gender.

What were some of the things you were told?
Nothing so far.

What have you done in order to better live with your disorder?
Lots of reading. Several AS related books (so far the best is T. Grandin-S. Barron/The Unwritten Rules...), WP, AS related blogs, some scientific papers/internet sites. Accepting the invaluable help of my best friend and the support of my family.

Have you attended any organisations that help people with an ASD?
I'm planning to attend the adult courses of the (Hungarian) Autism Foundation after the evaluation which is also administered by them.


_________________
Another non-English speaking - DX'd at age 38
"Aut viam inveniam aut faciam." (Hannibal) - Latin for "I'll either find a way or make one."