Aspies For Freedom

I am glad I found this site….if for nothing else but to help me understand.  You see,  a friend, someone I already admired, has shared his secret with me – his diagnosis of Asperger’s.  The strange part, my 6th sense told me *something* was unique.  And after I dove into the www to learn more about AS, the pieces of the puzzle all fell into place.  

Since full disclosure, Phoenix (insert the spiel, “not his real name, but will use this name to protect his identity”) and I have probably logged over 100 hours in the past two weeks  discussing almost every aspect of the AS world v. the NT world.  I am in awe and amazement over what is normal to him………..and at the same time shock and horrified of treatment that he accepts daily.  Phoenix has been fairly convincing on the surface he has let go of his anger, but if you probe a bit deeper……you will see it is alive and well.

I tell you all this because there are two areas I would love additional feedback on…who knows, maybe I will have to guts to tell him about my post here.  (Who am I kidding?  Of course I am going to tell him….because that was promise #1, no lies from the NT, and an omission is the same as a lie in my book…now it comes down to when I tell him….sorry, I have bad habit of going off on tangents that drive anyone crazy).

Phoenix tells me NT (non-family) acceptance of AS is virtually non-existent….that at best, a cursory interest or acknowledgement will be present and then, many (or most) times, the NT leaves (or did he say “escapes?”)  the relationship.  He tells this to me without emotion, as if he were describing how the sun was going to rise daily.  As if it were fact, and nothing will change this fact.  (And of course, I attach an emotion to a reaction on his behalf…..and also wonder if this is not just another defense mechanism).
I find this a very hard pill to swallow and have trouble accepting that it must be this way.  (If you can’t tell, I am an eternal optimist).  My question is this:  is what he is telling me the same as what the majority of you have experienced?  How many of you have had an NT friend (not family) in your life that know the truth?  And, do any of you have several NT friends (again that know and accept the truth)?  I keep telling him (or is it myself) that he is wrong…..many people will accept the truth.  I *really* want to believe I am right.  Or is my optimism just a bit too bright?

Phoenix told me his story one day quite simply because he needed my help.  (I tend to dig deep when someone tells me something….so perhaps I prodded it along).  Where he needed my help was assistance in finding a doctor in his area.  Sounded like a simple request to me…..and of course, I jumped right on in.  This is a huge deal to Phoenix, because he realizes he is going to once again become the labrat, in a world where he does not trust doctors.  But he needs one, one to act ask “gatekeeper” for his medical care.  So, fast forward, the only criteria for the doctor is a familiarity with Asperger’s.  Oh, my God!!!!  What was once viewed as a simple, trivial task has become a challenge that would drive anyone over the edge.  While no one has been rude, the favorite line is to pass me along to someone else.  In the past week, I have placed no less than 30 calls and have talked to organizations in several states.  I bet it doesn’t surprise anyone I have had only 3 returned telephone calls.  This includes various AS associations, as well as, major university hospitals.  What is going on?  (He tells me it’s the fear of autism).  How on earth did anyone find their doctor?  Please tell me this is not a daily occurrence!  (I am looking in the Boston area if anyone has a doctor’s name to share).

Thank you in advance to any insight you can provide me on these topics.

A NT that *really* wants to understand,
Dixie

Hi Dixie, I can try and give you my personal opinion.

Phoenix tells me NT (non-family) acceptance of AS is virtually non-existent….that at best, a cursory interest or acknowledgement will be present and then, many (or most) times, the NT leaves (or did he say “escapes?”) the relationship.

That scenario has been posted about as happening to numerous people here. There is also a very nasty forum for partners of aspies which graphically confirms of all these stereotypes. There will no doubt be people who have good experiences telling people, but it does seem that a negative response is much more common.

Hi Dixie
Darn, too bad you're not in Seattle!! I'd have the perfect MD referral for you--she's the wife of one of my colleagues, a GP-internist, and they have an aspie son. What kind of doctor does Phoenix need?  The person I'm talking about used to live in Boston and might have some suggestions, if I inquired.

Re: friends. One of the NT people on the other online forum I post to often talks about her "aspie friend." I've told some of my longstanding friends that I'm an aspie and they've basically expressed disbelief and then treated me that way they always have.  In terms of a couple of more recent acquaintances that I've told, like my next door neighbor, the reaction has been curiosity and a long conversation about genetics, development, etc.  (Her husband has ADD.)  This is going to sound totally trite and platitudinous and perhaps overly simplistic and optimisitic, but...the first step in frienship is having some comfort and knowledge about yourself. To the extent that Phoenix has that, then he has the possibility of friendship, should he desire it, in my opinion.  There will be people out there who are attracted to who he is, if he himself is so attracted.

I can't do anything about the doctor part, I live in Australia!  But as for the part about SOME NTs bad reaction, it can be very true.  I am used to the rolling of eyes and the quick getaway; having said that, however, there are NTs out there (like yourself) who are invaluable to us as friends.  And while we may not spell it out, we really do value your friendship.  

From personal experience, my work colleagues all know I'm Aspie, and while the majority are cool with it, there are one or two who are freaked out by my lack of facial expression and disinterest in social interaction, and one who is downright hostile to me, to the point where the boss told him to get off my back.  Unfortunately bullying doesn't always stop when you leave high school; it just becomes more subtle.  

I wish you and Phoenix all the best in your hunt for a suitable doctor.  And thank you for being such a good person and friend.

Alison

Energeia, at first it was thought a psychiatrist may be the route to go...only because Phoenix feels his diagnosis needs to be refreshed.  The initial diagnosis most likely would have been revisited had he remained under regular medical care.  I would suspect, however, an enthusiastic internist could certainly order the diagnostic testing and coordinate care.  It's more of a case of the right person, not the right specialty and   someone to act as gatekeeper, if other doctors are needed.  A doctor that isn't going to feel he is being lied to because the eye contact may not be there.  What is really frustrating is I have learned to give as little information as possible.  I feel like screaming into the phone some of the things you all have said in your posts on this board: "he works a job for God's sake" and "he can drive!"  Each call that has been returned has been a "you really need to contact"...........resulting in a finely executed handoff.  (He has already gone on one appointment "blind" that ended unsatisfactory).  Thank God there isn't an urgent matter as this has taken over two weeks so far.  So any recommendations you may turn up, will be cherished.

As far as the friend scenario goes, that was more my curiosity (after a debate).  Phoenix is very comfortable in his own skin and has no problems attracting friendships (especially the ladies).  He has attempted to introduce his AS to a common friend and I have witnessed this friend refuse to accept the truth.  My argument is not everyone is like this one friend.  I guess I just question how someone that can see beauty in so many things cannot see it in his fellow man, enough to take that leap.    I guess my optimism wants to believe understanding people are out there…..it’s just a matter of finding them.  

And while I am flattered you call me a good friend…this is no different than what I would do for any friend…..I guess that’s the part of me that doesn’t *get* it.

Dixie

Dixie--seeking clarification--are you wanting a doctor in the Boston area who can confirm Phoenix's Asperger's diagnosis? i.e., is that the main issue, rather than some medical concern?

Sorry, was not clear.  Phoenix decided it will be best to start at the beginning....with fresh diagnosis.

But, if you do know of an internist, we will gratefully take that name, too.

This search has been so disappointing, we are at the point we will accept what we can find.

Thanks!
Dixie

Okay, I'll ask my colleague's wife if she knows of someone in the Boston area who has the expertise for evaluating whether or not someone is on the autism spectrum. I'll PM you if I find out anything.  Oh, yeah, how old is he, more or less, in case this matters?

i don't really have ,much experience with NTs turning their backs on me due to AS, because they don't really know about AS, but i do have clinical depression as  a comorbidity, and because there's a huge taboo about 'mental illness', i've lost some friends because of that.

i guess it's a similar thing though, anything that is labelled a psychiatric condition provokes a very different response to physical 'illnesses' or medical conditions.

before i started reading up about AS i wasn't aware of the different approaches to 'disability', by which i mean differences, i.e. the medical and social models.  i think there cshould be much more public awareness of that, for a start.

Phoenix is 39.....is successful in his career and unless you knew about the AS  (or like me, even knew about AS), it would not be apparent.  However, now that I know, I can't believe I missed it.  

Please know that your assistance is greatly appreciated......even if you hit another brick wall.  It will just make me more determined  :grin:

Dixie

Okay, I just sent an email--let's see what happens.