"Aspergers is not an excuse."

[Simply a Bibliophile]

When my mum first suggested that I might have Aspergers, five years ago, it was met with an astoundingly negative reaction by the rest of my family.

"What? There's nothing wrong with her!"
"I know boys with Aspergers, she's nothing like them."
"She's just going through an antisocial phase." (note that this "phase" had lasted my entire life)
"It's just the diagnosis of the year."
"Who told you that?"

And then there was my dad, who refused to have me diagnosed because "Aspergers isn't an excuse for anything." He was convinced that I would use it as some kind of "excuse" to get by in life "without taking responsibility for your actions".

Has anyone ever been met with a similar impediment to diagnosis, or resistance like this after diagnosis?

 

[smith2267]

yes i've been accused of lying about having it

 

[Bay]

My father and a few friends have had the attitude that everyone has Asperger Syndrome to some extent, therefore, no one REALLY has it (including me, who was diagnosed a couple of months ago). They believe that I am being hypochondriacal, and that it is rather fashionable at the moment to have Aspergers. They have no real idea of what I have been through.

 

[Geordie]

I don't look like I have Asperger's.

But I feel limited in social functioning, so I have to accept my conditions silently without revealing them.

Till today, few people outside the Autism Society in my country knows my conditions

 

[Arashi222]

I think some people do use it as an excuse. But for the most part I have been called anything from a liar, drama llama, to werido and freak about having AS. Its hard for people to understand that being different isn't something that is fun for us. It's not an excuse though. I mean I know of people that do use their conditions as it were for getting out of things but those are the people I think who haven't had a time in their life where everything was hard to function. I am visually impaired have been since the day I was born. I had to learn to do things very differently already from when I was little kid anyway. Having AS just made it that much harder and I think that people don't want to believe it because its hard for them to realize just how hard something they can't see can be.

 

[King_Oni]

If Asperger's should be used as an "excuse" I think something can be said about how accomodations for people with disabilities in general are being marketed. There are some situations I've stumbled across where the only thing missing was a red carpet. And as such people are willing to get on the train and claim they have something and don't have to work etc.

And all while I don't think it's something that can be used as an excuse for everything, I feel that some things pretty much push us there. I'm willing to try and function to some extent like NT's do, but only if I'm given the time. And time is a rare thing nowadays.

But with my reasoning, one could not even claim stupidity as an excuse to not become a nobel prize winner. He just needs more time to get his **** together.

I feel it's the same; I'm socially inept in some way... maybe it's Asperger's, maybe it's just me... who knows. If given the time I might try and fix this, but being pressurized in "getting a job" and dealing with other situations, there's only so much you can devote your time to on a daily basis.

He was convinced that I would use it as some kind of "excuse" to get by in life "without taking responsibility for your actions".

He would love me... since I'm not blaming aspergers for not being responsible... I just don't like being responsible quite often, lol

 

[Soup]

I think there's something the NT world utterly fails to do (that we tend to be better at due to LOGIC!)

They don't differentiate between an excuse & a REASON! A simple example: if an Aspie, stages a bank heist, molests a child or steals an old lady's purse subsequent to clocking her over the head with a beer bottle, ASPERGER'S IS NO EXCUSE!

If an Aspie becomes borderline non-verbal in group settings, begins stimming (rapid rocking for ex.) whenever confronted with unfamiliar people or situations, is hypersensitive to neon lights & is phobic & suffering from severe anxiety and because if these symptoms cannot work or study <----THOSE ARE REASONS

And the fact that a medically recognized & legitimately diagnosed condition is causing him to become disabled, he should receive every form of support that his society has to offer. He is no longer simply a person with Asperger's: he is now SUFFERING from Asperger's.

Another question: what gives society the right to be so lacking in compassion that a person (whether an Aspie or not) must have rolled so far downhill that he is clearly & overtly SUFFERING before he is deemed worthy of accessing the resources that his & his family's tax dollars have helped to fund?

 

[King_Oni]

Another question: what gives society the right to be so lacking in compassion that a person (whether an Aspie or not) must have rolled so far downhill that he is clearly & overtly SUFFERING before he is deemed worthy of accessing the resources that his & his family's tax dollars have helped to fund?

I feel that the explanation is quite simple; The **** has to hit the fan, before things will be perfectly clear.

But as such I bothers me that I first have to hit rock bottom to get support, I rather keep myself out this predicament and seek help early on, get services and not experience "trauma".

 

[smith2267]

My life has been less pleasant than most from what i can gather. Being bullied, fired, never able to find a mate. Does anyone think I would have chosen those things?
Are they nuts?? oR DO THEY THINK i AM? I am not willfully engaging in behaviors that cause me problems and then using asperger's as an excuse. How crazy and self destructive would I have to be to do that?

 

[King_Oni]

My life has been less pleasant than most from what i can gather. Being bullied, fired, never able to find a mate. Does anyone think I would have chosen those things?
Are they nuts?? oR DO THEY THINK i AM? I am not willfully engaging in behaviors that cause me problems and then using asperger's as an excuse. How crazy and self destructive would I have to be to do that?

People being self-destructive isn't something new.

However... and that's an interesting thought. If all the things I'm missing out in life because of my Asperger's are things I, apparently, choose for myself... and as such am a self-destructive person, how is that different from any mental disorder?

So with that... if people still deny that Asperger's exist, perhaps they also have a explanation why some people act like this. Chances are they'll go on about "you just want attention" or "you're insane". Well, either way... then it's not Aspergers that I need help for... then it's because I felt neglected in my life and/or am insane now.

Either way, there is something wrong. And I might need help to cope with it.

 

[Soup]

King_Oni's comments have brought to light yet another cultural difference between Aspies & the NT majority society (again: not every single Aspie & not every single NT):

We tend to not abhor a vacuum: when we don't understand why some phenomenon is occurring, we'll investigate, do some research, ask people who are likely to know (like on science forums etc.) or simply admit that we just don't know why or what something is.

The masses in the NT world tend to do what they did back when they were cave-dwellers: MAKE SOMETHING UP!! They mythologize. Think about early (as late as the 60s) theories about the causes of Autism: it had to do with maternal frigidity! Kids are Autistic because their mothers (NEVER their fathers) weren't sufficiently loving. What research was there to support this 'scientific' claim? NONE. The same goes with the cockamamie vaccination theory & the dietary theory. While nutritional improvements & detecting food allergies is good for all people & results in health benefits, it won't 'cure' Autism!

When a person's behaviours cause them to be annoyed, baffled or even mildly inconvenienced & they can't understand or perceive the reasons behind them, they resort to victim blaming! The person did it on purpose. The person 'wants attention'. OOOkkkaaayyyy....now, fellow Asperians, let's apply LOGIC. NT culture is highly pro-social. therefore, wanting the attention of others & wanting to pay attention to others is essential. One cannot socialize entirely alone!!!

So, what is wrong with wanting or needing attention? The problem isn't wanting attention: we've proven that it makes no sense. The problem is the way in which some Aspies might go about socializing: not dressing or looking like they 'belong' (being out of NT uniform). Being too close, too far, too loud, too soft, staring too much, not making eye contact, wanting to discuss their interests that the NT mightn't share... Another one is similar to a language difference: the Aspie might have a melt down, or he might stim. The NT sees these behaviours & misreads them as a tantrum.

A melt-down isn't the same as a tantrum: a tantrum is motivated by stubbornness & defiance & often the intention of embarrassing a parent into giving in: "I WANNA CANDYYY!!! MOOOMMMYYY!!! WAAAAHHH!!!

A melt-down is an expression of being extremely overwhelmed & possibly over-stimulated <---it can be comparable at times, to a panic attack. Melt-downs do not occur 'on purpose' to get attention any more than panic attacks do. Both are extremely unpleasant for the person in the throes of one & the wrong kind of attention can exacerbate them.

Further complicating matters is the fact that many mental disorders & psychiatric conditions can affect Aspies just as they do NTs. Differentiating between what is Asperger's & what may be early signs of Schizophrenia isn't easy. Discerning between Asperger's & what is Histrionic or Borderline Personality Disorder behaviour is tough. Little research has been done & doing research on Aspies is hard since we tend to be obscure! Also finding enough of us with similar symptoms who are willing to participate in studies must be nearly impossible.

Being self-destructive can be co-morbid with Asperger's due to the frustration, depression & sense of being a reject some Aspies experience. Constant unpleasant & distressing experiences take their toll & some resort to substance abuse & other self-destructive behaviours like cutting. This can be a cry for help, an expression of self-hatred, a way to numb or physicalize emotional pain or many other things: it's complicated. NT culture has a way of over-generalizing & over-simplifying. Asperian culture is DETAIL ORIENTED & highly specialized. We see very subtle nuances & differences. Helping NTs see what we do might help them understand where their oversimplifications & mythologizing is problematic.

So many Aspies are seeing their lives crumbling around them: many are floundering between adulthood & adolescence with a foot in each. So many are isolated & long for friends: others are socially inundated & crave solitude. We aren't doing this 'on purpose' any more than a foreigner new to a country is 'not fitting in' on purpose: he is being himself & doing his best: he's just DIFFERENT. One of the most harmful NT cultural myths: DIFFERENT IS BAD. They are suffering from a false belief so try to be patient with them. Eventually, we'll be in a position to better educate them about us.

 

[Deno]

This is something that concerns me. Most of my family (especially my mom) seems to believe I don't have it. I think they believe I keep coming up with things that are wrong with me for excuses perhaps. But I am trying to come up with what is wrong because I CAN TELL that I am not the same as everyone else!! Previous Diagnosis's were Depression, Inattentive ADD, and Social Anxiety. Asperger's is the diagnosis that explains me, because it sums up my traits perfectly. It is not a diagnosis I chose because I thought it would be advantageous in some way. Although having people be aware of my autism would be slightly advantageous because they may be more understanding I suppose. But then anyone that hears I have it, that does not fully understand it, will think of me as a retard

Eventually, we'll be in a position to better educate them about us.

I hope eventually comes sooner than later!

Side note: I can never decide if I should use size 2 or 3 font. Any suggestions? I find 3 easier to read, but I'm concerned it may bug some people, as it takes up more space on the screen...

 

[Soup]

I usually go with 3 because I know several people here have vision challenges. If anyone requests something else, I'll do that.

 

[Butterfly_Lady]

I have a cousin that was official diagnosed over 10 years ago. My aunt and mom eventually had a conversation comparing how was he growing up and how i was when i was growing up. My aunt and mom are both in the medical field. My aunt is an Ultrasound Tech (not sure if that's the correct job name for her) My mom has been a nurse for more then 20 years. They decided that i was probably also on the spectrum. it took me until this year, (guess that was a form of denial) i had never had the interest to find out what that ment in my life. Even though my mom helped to diagnose me she still thinks i use AS as an excuse for how I am. After extensive reading this year, AS is the only logical reason i have found for the way i am. I don't want to use it as an excuse at all. i wanted a name for how i am different from everyone else. I wish more people would understand that, what i do, i don't do on purpose as a way to get attention. as a matter of fact it would rather NOT draw extra attention to myself but always seems to happen anyway just for being myself. my mom has no interest what so ever to read anything about AS to better understand me. she says it's "LIKE READING FOR WORK" because she is a nurse.

 

[smith2267]

at butterfly lady, i don't think any of us like drawing attention to ourselves

 

[Scaramouche]

When I fistly told my parents about my suspicion of AS they simple don't listened to me and said: "Stop talking about this - you are absolutely normal. Look at the "Rain Man" - this is real autist, not you". When I tried to explain the tests results in comparison to symptoms of AS they thinked that I want to have it. Virtually I just wanted to decide with my state as I always felt myself different from people around. Also my parents thinked that AS is just a way to show my "difference" to surrounding people. Well if this would be truth now I would said to everybody: "See me - I'm an aspie and this is my huge advantage" - but I prefer to say nobody about this. I received a 5 neurological diagnoses in my childhood and now I differs significantly from my contemporaries - but my parents still thinks that I'm "normal - just lazy, infantile and gutless". I explained them that I can compensate some of my negative "features" - but this will take some time. Now I use some stategies of the autistic people and it helps me to be more organized and less anxious.

 

[Soup]

"... but my parents still thinks that I'm "normal - just lazy, infantile and gutless" -Scaramouche

What an awful thing for a parent to say to or think of their child! It took guts, effort & some maturity to actively seek out this forum, investigate & explore it, choose to join, share information about yourself with complete strangers & then actively participate. Nobody coached you through it, made you do it or taught you how.

Sometimes, these parental reactions are culturally nuanced. Canada has a relatively tolerant, informed & accepting view of differences since we're a multicultural society wherein people from all over the world live, work & intermarry. We tend not to be terrified of everything deemed a mental illness. In other places, any mental difference (sometimes even a different political opinion or religious one) can get a person deemed mentally ill (also meaning crazy, dangerous & frightening) & get him forcibly institutionalized. People living with depression & many other treatable conditions dwell in silent denial & drown their misery in alcohol, drugs & other dysfunctional desperate behaviours. In some cultures, superstitions persist about Aspies & Auties: we're cursed, we're witches, god hates us for some reason, the devil has our souls...Some people in these cultures even fear that we're contagious!

The older generation here are in denial of less visible mental illnesses & developmental differences. My mother is under the delusion that I'm simply a 'strange bird' (like an apteryx or something!). I'm a reclusive Aspie & she thinks that if she forces me to 'engage' & socialize, I'll magically become sociable. This makes as much sense as waving brightly coloured images in front of a blind man believing that it'll render him sighted! Rain Man was (is) based on Autistic savant Kim Peek. He is further along the spectrum than most Auties. Very few of us are savants on the one hand yet severely impaired on the other. The media has done us a disservice by perpetuating these kinds of myths.

As far as having negative features goes, in whose opinion are these negative? Unless they'e harming you or someone else, they are just features & differences. You don't have to overcompensate for them. I've used many strategies to adapt to having to live in the NT world & they've been helpful to me. AC contains much that you should find useful in helping you cope.

 

[King_Oni]

"Stop talking about this - you are absolutely normal. Look at the "Rain Man" - this is real autist, not you"

They are aware that Raymond isn't autistic (nor based upon someone with autism) but had FG syndrome presumably, since his character was based on Kim Peek? There's some similarities in him and people with autism though... and... let's not forget, that it's a movie where stuff gets exaggerated a lot. For example; I can never take serious anyone who comes across "hyperintelligent" in movies or series either... if you'd look at Sheldon in the Big bang theory, his retorts are scripted, his quirks are scripted... I have yet to meet a person who is exactly like this. Quite sure I wont since it's an exaggeration of someone intelligent and socially awkward. And it's funny that a lot of people don't realize that it's something scripted. I'm quite sure that Jim Parsons (the actor who plays Sheldon) is smart and funny in real life, but nowhere as smart as Sheldon.

And clearly not every aspie (or someone with autism in general) is the same. In my social group (5 people I know who all have Asperger's; either diagnosed or undiagnosed officially), we all have or quirks and aren't the same in that way. So comparing someone with severe autism to someone with a milder form and telling him "nothing wrong with you"... to me that sounds like you're, for example, only impaired for walking purposes is you have no legs at all, rather than a disorder in either leg which makes walking difficult (or even have only 1 leg).

 

[Scaramouche]

They are aware that Raymond isn't autistic (nor based upon someone with autism) but had FG syndrome presumably, since his character was based on Kim Peek?

No, they think that he's autistic. Frankly, I thinked so too many time. Virtually here in Russia when people hear the word "autist" they remember the "Rain Man". Earlier I had the same stereotypical opinion about autism.

And clearly not every aspie (or someone with autism in general) is the same. In my social group (5 people I know who all have Asperger's; either diagnosed or undiagnosed officially), we all have or quirks and aren't the same in that way. So comparing someone with severe autism to someone with a milder form and telling him "nothing wrong with you"... to me that sounds like you're, for example, only impaired for walking purposes is you have no legs at all, rather than a disorder in either leg which makes walking difficult (or even have only 1 leg).

Well, pretty good comparison. When I met the ASD several years ago I understood that there no two same autistic people - like you never could find two same neurotypicals. But this is difficult to explain to my parents.

Actually I know why they so concerned about me. This is mainly due to specifical features of living in Russia. For example, in Germany you may have even small occupation but have a worthy live - not rich but not a life of beggar. Here in Russia you can work as university professor but live like beggar - this is real. Another difficulty that in modern society (probably only in Russian society, but I'm not sure) the IQ level means less than communication abilities. For example such situation when you have a talent or special ability but don't have a "useful connections" - in such situation you will be a looser just because you don't know how to turn you talent into money. As my social intellect level is like teenager (i often considered infantile) the concerns of my parents may have sufficient grounds.

 

[King_Oni]

Actually I know why they so concerned about me. This is mainly due to specifical features of living in Russia. For example, in Germany you may have even small occupation but have a worthy live - not rich but not a life of beggar. Here in Russia you can work as university professor but live like beggar - this is real. Another difficulty that in modern society (probably only in Russian society, but I'm not sure) the IQ level means less than communication abilities. For example such situation when you have a talent or special ability but don't have a "useful connections" - in such situation you will be a looser just because you don't know how to turn you talent into money. As my social intellect level is like teenager (i often considered infantile) the concerns of my parents may have sufficient grounds.

I think that this goes a long way for a lot of countries. If you know the right people you might get recommended. Just having talent is kinda worthless in that regard.

I once blogged about aspergers and talents on Aspiecentral, maybe this notion/idea holds true for you as well (yet it doesn't change your situation in your country unfortunately)

http://www.aspiescentral.com/blogs/...t-worth-do-you-have-just-useless-talents.html