Autism or Affectation?

[Dashenka]

Not too long ago I was diagnosed with Asperger Syndrome, which is an autism spectrum disorder (ASD). To come to this diagnose, I've had to take some tests, mostly oral and a lot of questions on how I was when I was younger. I've always felt a sort of blockage that limited me from doing certain things but I never thought of autism until now. Now having the diagnose fo me doesn't change anything. I anything, it's a relief because finally after all these years I now know what it is.

People around me, who don't know me think it's nothing and claim my psychologist has given the diagnose way too easily. When they ask me what I have that is autism related I always tell them the compulsive and ritualistic behaviour I have. I sort everything (when I was at the psychologist, I had to sort the pens on his desk from big to small, which made his job diagnosing me a lot easier ) and need a fixed schedule to do things. I cannot do things spontaneously. When I tell them that, a lot of people tell me they must have autism as well because they have the same thing, not understanding that it's just a few things of the Asperger syndrome.

Because I'm 27 and only been given the diagnose now, a lot of people talk down the autism, saying it's just a trend and that people are given the diagnose too easily. Before this I never took much notice to autism but now that I have it, I found I need to be careful who I say it too, because of the negativity that seems to hang around the whole thing. Personally I think most people think of autistic people as people who never go out, never make eye contact or can hardly talk, which is one of the three forms of ASD. The other two, Asperger and PDD-NOS, are not that common or not as visible.

I'm running my own business and I got some friends so I don't fit into the 'classic' view people have of autism and because of that, I often get the comment it's just affectation, rather than me actually having a real problem.

Does anybody have experiences with this or something similar and how do you handle with these people who don't seem to understand that Asperger is a real condition and that it can really block or limit people in their day to day living.

[Moraline]

I know a few people here on this forum that have Asperger Syndrome. I'm sure a few of them will pop in here to say hi and let you know that you're not alone.

[Yukina]

I have Aspergers Syndrome as well. To be honest, I've done what I've done to most people in real life who belittle me. I tune them out. Though I don't encounter problems related to it that often because it's a fact I don't shout out. In my opinion, there is no single way to describe people with ASD. All of them just tend to function different. In the end to me, they are just like people, all having different qualities and quirks at varying levels. For example, there are the sad or snarky such as myself, while others with ASD I have met happen to very enthusiastic.

(Sorry if I delved on the questions a bit)

[Dashenka]

I know everybody is different and I don't care too much about what people think either but I encounter some issues at work when I'm dealing with clients. I'm not telling them what I have but I often think they think of me as weird or something or rude. I am who I am and the people I love accept me for what I am and to me that is all that matters. Things that come naturally to others, don't come to me at all and in my job as travel agent, that sometimes clashes.

Also most of my family think I'm just seeking attention. Saying I'm perfectly normal and I can't get to their heads that what I feel sometimes is not normal and I need some help with that. I've lived with it for 27 years, so I'm not a classic case of severe autism like you see in some movies but still I feel limited sometimes and that's the hard part. Since I've gotten the diagnosis I also feel the quirks coming with the Asperger are getting stronger, which isn't really helping at the moment.

[Yukina]

To be honest, I don't really have any other advice to give you. Good luck nonetheless.

[Dashenka]

Thanks :)

[Chrystal]

*hugs a fellow aspie*

I'm self diagnosed, admittedly, but seriously, I have 90% of the symptoms, and the self diagnosis test I took on-line said I was actually autistic - which i took with a pinch of salt, as I know how inaccurate these internet things can be.

But I have had this confirmed by other people who know me.

I actually find it to be a great relief knowing that actually there is something physiological and it's not just me!

I'm actually at the higher end of the spectrum but I didn't used to be. In fact, it has been internet role playing that has helped me more than anything with my interpersonal skills. Being able to talk openly and honestly with people who have no idea who I am, who won't tease or judge or condemn, is actually very therapeutic, and putting myself in situations that I wouldn't be able to cope with in real life is actually a great way  of pushing back my boundaries.

If it hadn't been for the internet, I would never be able to work retail!

[Dashenka]

Don't you have the feeling things got 'worse' after you knew you had it?

I mean for examply my schedule has always been important to me. I just need to know what I have to do in two hours time. But lately, I completely freak out when something comes up. I get nervous, restless and even try to get away from it.

First time I realized it (which got the whole train rolling) was when I got the dog. I didn't know what it was but I had my schedule and set times for everything and then I got a puppy and she didn't really pay attention to any of it. It freaked me out but it does now even more. The dog's adapted but I sort of haven't.

[Oniya]

Receiving a diagnosis of any sort is likely to make you hyper-aware of the symptoms associated with that diagnosis.  It also gives you a road map for what you are likely to deal with.  I'm myopic - so I compensate with lenses.  My husband is somewhat dyslexic - so he compensates by taking extra care to get things spelled correctly (sometimes consulting his favorite volunteer editor *waves*.)  People who are diabetic compensate with dietary changes or insulin injections. 

If people are telling you that they perceive you as rude, then that tells you that there is something that you need to work on.  You may have to sit down with a roommate or trusted friend and ask for honest feedback about why you might be perceived as rude.  When you are aware of the behavior, then you can work on compensating for it.  It might be as simple as adjusting the amount of eye contact you make, or something more complex like trying to imagine how your phrasing might sound to someone else.

The things that don't come naturally to us are the things that we all have to put extra effort into.  Organization doesn't come naturally to me, but it does to my older sister.  That doesn't mean I don't have a chance of becoming organized, just that it is more of a challenge for me to overcome.

[Irishfire87]

I'm an aspie too.  I was diagnosed quite a while ago.  What people don't realize about Asperger's is how high functioning most people are that have it.  Back in 7th and 8th Grade I was in Gifted and Talented and Special Ed (This was more about procrastination and distractions than anything else as I was only in it for a couple of years) in the same year.  There was a lot I had to overcome because of it like my social awkwardness.  People didn't understand it though because my math homework was other people's extra credit... until I got into Algebra...  That there is as interesting a story as any.

The best way to handle people that don't believe you is to show them the symptoms of it on a website that details them if they are willing to learn about it.  Other people however that are too set in beliefs or just too ignorant to let you explain it to them or to learn about it need just be ignored which can be hard at times.  The important thing though is having been diagnosed like you or finding out about it like Chrystal you learn a lot about how to cope with Asperger's and just knowing what's going on with you.  It's more important that you understand yourself than it is that other people do.

That being said people with Asperger's are usually really good with numbers which can really help with running a business.  I also work with a lot of customers that are 'summer folks' around where I live and it can be hard dealing with people that have no idea what you're going through and don't really care to know if it doesn't benefit them so I understand what that is like.  Asperger's symptoms really can get worse with age but the important thing is just understanding your quirks and trying to work on them.  For me one of the harder ones to overcome was just keeping eye contact with someone that I didn't have strong trust in and it is still difficult to this day for me to keep eye contact.  The only reason I learned to cope as well as I have was an Aspie support group that I used to go to once every one or two weeks.

I'm sorry if this came across as rambling more than helpful.  I was just speaking my mind rather than composing it.  If you ever need anyone to talk to about it I'll be more than glad to try to help. 

[Chrystal]

Don't you have the feeling things got 'worse' after you knew you had it?

I mean for examply my schedule has always been important to me. I just need to know what I have to do in two hours time. But lately, I completely freak out when something comes up. I get nervous, restless and even try to get away from it.

First time I realized it (which got the whole train rolling) was when I got the dog. I didn't know what it was but I had my schedule and set times for everything and then I got a puppy and she didn't really pay attention to any of it. It freaked me out but it does now even more. The dog's adapted but I sort of haven't.

Honey, I think you are confusing developing a condition with having a condition identified.

It sounds to me that your condition is getting worse, and you need to take steps to improve it.

For me, I have always had these symptoms - I have never been able to deal with people, or stressful situations, I've always been shy, I've always been obsessive about certain things, I've always had a high IQ, and a vivid imagination and bugger-all ability to express my imagination - Don't be fooled by my writing on here, this ability to write is something I have developed recently, as with my ability to paint (which is no where near as good). I've always had difficulty getting ideas that seem obvious to me across to other people, and at the same time having trouble understanding what the hell it is they are on about. I have never been able to read people's emotions or empathise with them. I've always had trouble making friends.

To be able to put a label on the condition, to say "This is because I'm Asperger's Syndrome", has actually helped me cope. I'm not some sort of freak! I have a medical condition that explains it all. I means I canm find others like myself who have similar experiences. It also means there is a treatment . Being "self diagnosed", I'm also "self treating", basically by forcing myself to do things that make me feel like panicking and curling up into a little ball. And slowly, over time, I have improved.

So, Dasha, babe, don't give up. There is hope. The first stage to fixing a problem is identifying it. Now you know you have Asperger's, you can do something about it. But think of this: If you didn't know you had it, you would still be having the same symptoms, you just wouldn't know why.

When i was a kid, they didn't have a diagnosis for Asperger's. They had only just figured out what autism was. There was no way I was ever going to be diagnosed correctly - I was labled as a "bright but naughty" child with a poor attention span and a tendency to act up if I didn't get my own way. The fact that I was incapable of understanding why I couldn't have my own way never crossed my parents' or teachers' minds!

Anyway, I'm rambling (I think that's a minor symptom too - a tendency to ramble. Not a conclusive one but put it with the others... lol).

My point is, being diagnosed is not the end of the world, it's the beginning of a new one - the start of the fight back!

I'm sorry if this came across as rambling more than helpful.  I was just speaking my mind rather than composing it.  If you ever need anyone to talk to about it I'll be more than glad to try to help. 

I rest my case, lol...

[Dashenka]

All of you are right but knowing you have it and dealing with it is a different thing. How can you train something you are comfortable with? Sure I'm not a big fan of groups but that is why my girlfriend and business partner usually does the talking to the customers and I make the phonecalls and do the bookings and all. I'm fine with that, been that all my life.

But the other day a couple of friends invited us out that same night and rather than just saying yes, I said no and kept bringing up excuses that made no sense. When Vika asked me why I said no, all I could say that I wasn't comfortable with going out on such short notice. That is my main issue I guess.

I'm extremely creative, bright, orderly (to the point where it gets annoying for others) and in a small group, actually quite social but don't ask me to do something that is out of my schedule or unplanned. I hate surprises. Vika never understood why but now she does so she won't bring me surprises anymore. Knowing it's Aspergers has put the puzzle together for me so I thought it would be a closing of the chapter and move on with my life.

Instead I'm feeling this particular issue getting bigger up to a point where I have the same cookies with tea every day, the same lunch at the same time each day. I think it's just that I want to be more spontaneous than I am right now and by wanting it, the feeling of being blocked is getting stronger and stronger. Guess I should talk to this with my councillor.

Also what you two already said, I can't organize my brain so when I post stuff like this, it's all a mish mash of words and things that aren't very well put together :) Also have got no concentration. You should have seen me and my puppy (Jack Russel Terrier ADHD Dog) at the puppyclass. She could only sit for two seconds before she got distracted, a second shorter than I could manage to keep my concentration.

Which is why I failed most educations I enrolled and ended up with no grades or anything. I spend my time at school drawing pictures in my notes.  O:)

[Irishfire87]

Yeah, that's probably one of the reasons I got voted most artistic in my class.  I practiced all through class.  It is hard though and I wish I could help, but like you I say no to a lot of things if they weren't already planned out unless I'm the one coming up with the idea.  I don't necessarily stick to a tight schedule but I don't like surprises or change and if asked why I didn't want to go do something I tell them honestly I don't know or I don't really like those people when I have no reason not to.   With me it sounds kind of similar to my eye contact issue in that it's something I have intentionally force myself to do even though it's something that is almost a reflex.  It sucks pushing yourself out of your comfort zone but if you stay aware of it is easier to push yourself to do it and with myself at least I usually enjoy the trip/dinner even though I really didn't want to do it in the first place.

That being said I understand how hard it is and in my case it's like preaching to the choir because I to the day have that issue and don't deal well with it even though I know that I'd enjoy doing it if I just went.

[Kolya]

I'm in a very similar position to you, Dashenka. Last August I was diagnosed with ASD and since then I've had doubts that maybe the diagnosis was given too easily, but I've come to realise that it doesn't matter if you have it or you don't. You are who you are and being labelled as anything will not change that. Autism isn't an illness, it's what makes us who we are. So what if we're slightly different? Let those people think they're better than you because they don't have a label.

In short, don't let the opinions of others stop you from enjoying who you are. My family act as if I have no issues (the main problems I have are sensory related) and it irritates me a little but I don't let it bother me too much, they're in the wrong not me.

[Oniya]

One very important thing to remember is that your counselor is going to be your best source for information about coping methods, because he or she has spent the most time talking to you and learning about your situation, in addition to having all the years of study involved with the management of ASD.  As Chrystal said, information that you get from online - even from well-intentioned sources - is to be taken with a grain of salt, because (as Irishfire87 said) all cases are different.

[Florence]

My school counselor back in highschool said I most likely have Asberger Syndome, but I don't think I've ever been officially diagnosed with it.

That said, I do fit the bill in some ways. I actually don't like rigidly defining my own schedule, I like just freely doing whatever comes to me. But anyone who knows me can attest that I'm absolutely awful when it comes to having to stop what I'm doing on short notice to do something else. Even if its something fun. If I'm told there's a party going on later that day, I tend to stress about things I wanted to do and having to change my plans for the day, even though, once I get there, I usually have a blast. Hence why, whenever possible, I try to remind people to let me know about stuff like that a day or two in advance.

Of course, I've always just been a jumble of mental symptoms. I have a few nervous ticks, I'm terrified of change, I'm prone to anxiety and depression, I can get frustrated easily and I'm somewhat of a hypochondriac. Oh, and I was diagnosed with ADHD as a kid, and to this day I basically have the attention span of a goldfish.

But when I was younger I knew people who were severely autistic, had Tourettes Syndrome, were severely bipolar, etc.

All in all, I think I got it pretty nice.

[Dashenka]

Thank you all guys for the support.

I guess I just have to make sure I don't let things get worse in terms of my rigidity but because it worries me, it probably will, so I will have to talk about that with my councillor.
Had some other issues when I was younger that I think prevented everybody from seeing the autism and now that everything has settled down as well as myself settling down in a new country and life, it sort of showed up :)

Thanks again.

[Sabby]

Autism can be really confusing... my issues with it are communication and emotions, but I've found that the condition is so damn broad that learning about it only takes you so far. You can know everything there is to know about Autism and still not know where to start in helping yourself. A councillor or something would be a very wise move. An impartial third party will help immensely in figuring out what exactly you feel needs work.

[Lovestheclassics]

A few quick thoughts
- aspergers is a spectrum disorder which means that your particular constellation of quirks may, like a snowflake, share many character tics with others with same diagnosis but also be entirely individual in its expression
- celebrate and leverage your strengths even as you tackle areas of improvement
- charm goes a long way when you are quirky
- medication is worth considering as are other tools that provide scaffolding for growth
- I'd hug you if I could

[alextaylor]

Fuck modern psychology.

Yeah, I was diagnosed with autism when I was in school. Didn't get along with people. Still don't. Coped with IRC because it's just plain awkward for me to communicate with people and make small talk like everyone else.

My parents are both psychologists. I have plenty of psychology books at home. They focus down into really narrow fields, often miss the big picture and get down into things like symptoms because there's so many conflicting theories. There's a psychologist (from Harvard so she has to be credible) who says something along the lines that if you go into a psychologists office and ask for a diagnosis, you'll almost always get one. It's similar with a lot of the medical world really, most amateurs search up symptoms on a list and then diagnose you with what fits that list. There's not really a reliable "not sick, perfectly normal person" standard to compare to.

A lot of medical science takes people as averages. Most people are sad at funerals. Most people don't act sadistic and don't troll. Those who do aren't necessarily schizophrenic. I'm a girl who gets turned on by brutal monster rape and naked cartoons. That probably puts me in the 'sick fuck' category, the type who will never get married and lives with cats for the rest of her life.

I don't go out. I don't make eye contact. I never make small talk. I just answer questions. I put everything into a schedule. My schedule breaks things down into 45 minute chunk tasks, and I bought an egg timer from IKEA to actually measure that. Everything in my house is labeled. I write expiry dates on everything I put in the fridge and force everyone else to. There's even a "3 days" and "1 week" label inside the fridge telling people which leftovers to eat first. My blood pressure hits 160 when I'm surprised (I actually keep a blood monitor to count this). As of writing this, it's 2.30 AM and I've spent the last 17 hours programming a calculator for some sex based roleplaying system that I'm probably going to get bored with when I wake up tomorrow morning.

And yet, I have friends. I make twice as much money as most people my age. I've graduated from a good school with a medal and got two businesses. My father was horribly dyslexic and he has more degrees than most people ever will. And that was from back in the days when you had to learn everything from books and lectures.

I am terrified of approaching people. But in the same manner that I'm terrified to ask a friend for money or ask a teacher a question I don't understand, I'm just as terrified to approach strangers and try to sell them something. Fearing everything has made me fear nothing. I've managed sales very well because talking with strangers feels like any other day in school. I've managed to approach unknown suppliers and get a lot of discounts from them because to me, negotiating with strangers is like talking with a teacher or parent and asking them for a gift. And because of my social handicap, they're actually very sympathetic to me.

I'm not trying to gloat or anything here, but I'm just saying that it holds you back as much as you believe it would. Everyone has a terminal illness - none of us are going to live to be 200. Everyone has some crippling weakness. Nobody is in the median of whatever the average medical study tries to paint us as... our extremes make us unique. Most people deny that they're going to die and they deny that they're just born worse than someone else in some way. Accepting your limits is a part of growing up.

There seems to be a lot of autists here and I dunno... maybe autistic people just like reading and writing more? We're all human. But I like being a 'mentally ill', abnormal person.

[Bloodied Porcelain]

My son is on a waiting list with a child psychologist to be tested for an ASD as well as a few other things (his behavior hints at several things, so we're taking him in to be tested to see exactly what's going on with him), and I've never thought for a moment Asbergers or any other ASD is something to be looked at negatively. Doesn't make you "wrong" or "broken" or even "ill" in my opinion, though I've heard a lot of people say that's what it is. I think it just makes you different, and not at all in a bad way. My son is a brilliant kid, and loving almost to a fault.

I don't have an ASD myself, but I am bipolar and have ADD and OCD, so I know how terrible people can be when they find out about your diagnosis. The best I can really say is that they suck and aren't worth paying attention to, and that there's a huge network of people here who have been diagnosed with a wide variety of disorders, and we're all very open and accepting people, most of whom are more than willing to be a listening ear.

[Oniya]

I write expiry dates on everything I put in the fridge and force everyone else to. There's even a "3 days" and "1 week" label inside the fridge telling people which leftovers to eat first.

... That's actually brilliant.  I've had 'George Carlin' moments with my family, as I appear to be the only one who cares about the leftovers once they go in the fridge.

[Dashenka]

...I'm just as terrified to approach strangers and try to sell them something. Fearing everything has made me fear nothing. I've managed sales very well because talking with strangers feels like any other day in school. I've managed to approach unknown suppliers and get a lot of discounts from them because to me, negotiating with strangers is like talking with a teacher or parent and asking them for a gift. And because of my social handicap, they're actually very sympathetic to me.

This is actually what got it rolling for me. I run a business and the whole idea of a business is to sell stuff to people. Luckily back in Moscow I had my girlfriend to do all the chit chat and I could just ask the most basic questions. When I moved to London and she didn't, I setup the business and found it a drag to go to work, because I wasn't comfortable asking people where and how they wanted to go on holiday.

Knowing now what I have made sense and gave me a certain freedom to approach people and ask them things. What also helped me, no matter how stupid it might sound, is the dog. Going to the park, walking the dog and meeting other dog owners. I can't chit chat but I can rant on for hours about my dog and the people in the park with the dogs also like to talk about the dogs, which in turn made me feel more comfortable and now I really talk to them about everything. I told them about my Aspergers and they all go.. oh well.. you're still a smart nice young woman.

There seems to be a lot of autists here and I dunno... maybe autistic people just like reading and writing more? We're all human. But I like being a 'mentally ill', abnormal person.

One of Asperger's (maybe autism in general) characteristics is a very lively imagination and very creative persons, which this website is all about.

[ladia2287]

Dashenka, you are not alone in this. There is a stereotype associated with autistic disorders and the various conditions and behaviours that are related to it, including Asperger Syndrome. But just because these stereotypes are the most commonly known forms does not mean they are the only one.

You say even your family has a hard time believing the diagnosis. This surprises me, because they would have seen your journey to diagnosis. But a friend of mine recently had a similar dilemma. I advised her to tell those who doubted the diagnosis to go see the professional who diagnosed them (they were diagnosed with Borderline Personality disorder, but the point I'm trying to make here is the same). If they still have doubts, go get a second opinion and invite them to come along and witness the process for themselves.

Those who belittle your condition, or try to talk down its impact on your life, are not worth having in your life. You should be surrounding yourself by people who love and support you no matter what, and having people around who seek to plant doubt in the validity of your diagnosis or your symptoms do not fall into that category.

The reality is that these people are not mental health professionals, so they are in absolutely no position to doubt the conclusions that your psychologist/psychiatrist has come to. I hope you can grow the confidence to believe that :)

[Dashenka]

I do. The people that don't take me seriously and say I don't call them as much as they would like because I'm lazy or don't care, don't deserve me. My closest family supports me and that's all that matters to me.

A lot of the comments I get is things like... 'but I have that well'. They fail to see that one feature doesn't make Asperger but it's a combination of things combined with how you react. I've accepted it and my condition and try to deal with it best as I can, which as I said, running a business isn't easy with a social handicap. Still talking to my councillor now and then because I have the feeling that since I got the diagnosis, the 'symptoms' got worse. So trying to deal with that now.

Otherwise I'm happy as can be so I guess to people I'm not one of those stereotype autistic people.