Aspies For Freedom

Your education  is up to date. I struggled to access a pscyhaitrist who was available to see my son when help was desparately needed due to symptoms of depression which related to the core issue of undiagnosed aspergers. My son was diagnosed with severe social phobia and depression. Due to the psychaitrists lack of knowledge he couldn't recognise autism / aspergers - when to my mind it was staring him in the face. Eventually we did receive the pertinent diagnosis - but this was after two years and a lot of money spent on services that failed to recognise the core issue.  
I would ring Psychaitric emergency services when things were really bad - they came to see us once, could not see evidence of a mental health disorder - meaning in their minds my son was not psychotic - and after a 20minute assessment they dismissed us - and recorded in notes that the problem was domestic. After this whenever I would ring seeking help - the poorly qualified nurses who took the calls treated me like a stupid woman who couldn't control her son. In one of these phone calls I was told to kick my son out of home - my son was extremely suicidal, after struggling throughout his childhood with 'unrecognised aspergers'. He had reached breaking point where he just couldn't cope any longer and this was the type of service offered by the emergency mental health system. This created feelings of disilllusionment with the mental health system. To see a public health psychaitrist involved a three month wait, this time delay didn't work for us. The people who provided the most support were police when my son would take off and when we feared for his life. The police were gentle with him and us, and they did not treat him as though he was bad. Finally a GP with aspergers made the diagnosis - once an ASD was identified, my son was able to access appropriate services, come off medications and set his life on a happier track. The poor service we received from the first psychaitrist left bad feelings. We did seek a second opinion from another psychaitrist - unfortunately he also failed to recognise aspergers.

The fact that you seek advice on this forum tells me that you will be good at your job, I get the feeling you care. The only thing I can recommend is that you continue to always update your education, always continue with new learning throughout your career.

Aspergers was not included in the DSM IV until 1994. Prior to this many people received an inappropriate diagnosis - or they forced to go it alone because of a lack of understanding by the medical profession. People learnt ways of coping, they may have had times of struggle, but they learnt to cope.
Good mental health care is often not easily accessible at the time when it is needed, and when it is needed people are not always in a fit state to find the help they need. To get the right kind of help  people need to know how to be able to access it. There is stigma attached to 'mental health problems' this again impedes people in their ability to access appropriate help. People with aspergers may not see their aspergers as a mental health disorder - it may not always create disorder in ones life. It is often the comorbids that create the problems and disorder.
Just my thoughts, maybe this helps you somewhat - - if you can follow what I am saying.

jos
The clinical diagnosis I got from a psychiatrist in the 80s was "endogenous depression disorder."  I'd have been better off being diagnosed with AS but that didn't exist then.

I don't think that I have a mental disorder.

Seems like a lot of therapy is oriented around the concept of adjustment.  This isn't bad, necessarily, but to do it well requires the right sort of self-knowledge.  And finding the right environments where the person's strengths are a good match for what's needed and expected.

Dunno if you're familiar with Myers-Briggs temperaments but if so, imagine the difference betweeen sticking an INTJ into an ESFP-dominated environment versus, say, and INTJ-dominated environment.

The whole identity politics issue is interesting.  I see it kind of like:

I'm asexual
I'm female
I'm aspie

versus:
Not...

I'm a person who's not having sex
I'm a person with female gender
I'm a person with asperger's.

But if I got cancer, I'd probably go with I'm a person with cancer or I have cancer rather than I am cancerous.

Listen.

Listen some more.

Keep listening.

I had a couple of referrals where I'd see someone for maybe half an hour (once it was with someone who was on call and who answered his phone to take queries from the ward/ER several times in the middle of what was supposed to be my assessment) and on the basis of that (and reading about my previous 'diagnosis' which I firmly believed was a misdiagnosis), they would venture an opinion.  They were wrong.

Yes, read through the notes, but keep an open mind.  Bear in mind that if you only take regard of the notes, you may be basing your assessment/diagnosis on a previous misdiagnosis.

Bear in mind that lots of people who self-diagnose as Aspies will have done a tremendous about of research, and they will also have considered what they have learned in the context of their life experiences, they will likely have run through a mental check list and if they're telling you they believe they're Aspie it's likely because they know the DSM-IV criteria and meet sufficient of them for a diagnosis.

It makes me laugh that even though I know me, I've known me for more than 30 years, a random medical practitioner will meet me for half an hour and think they know me.

Which takes me back to:  listen.

Don't assume, ask.

I tried to explain to medical practitioners who weren't expert in diagnosing AS in adults why I believed I was Aspie, but they were so full of themselves and their 'expertise' they didn't listen to me.

I was eventually referred to someone who does have expertise and had the diagnosis confirmed.  That process of confirming what I already knew took around four years.  Four years of seeing 'experts' who were ignorant, before finally finding one who wasn't.

Not suspicious.  Mostly frustrated.  

For most people the resources are not available, not affordable.  If the family physician does not know what autism is then there is going to be no referral to another professional who does.  

Some people do not want official diagnosis status because it will affect their job security, parental custody etc.  

What help offered for employment referrals where I live is totally useless for people over age 25.  The disability office deals with employers who want to hire people in wheelchairs and don't understand  about us at all.  

Treatment for anxiety, depression or separate disorders that a person can have along with autism could be beneficial.  

Social skills training can only take a person so far and it is very tiring to keep up the facade.  

We need acceptance by other people as autistics.   We do not need to change our autistic traits to suit others.

I think mental disorder is something that has too many negative connotations in the avarage Joe's mind to be used on something that connects people on this forum. Autistic people might be just as offended as others if they are said to have a mental disorder. Autism is something neutral to us, mental disorder may not be.

So I wouldn't say we come here because we are victims of autism, rather that we come here to meet others with similar situations or personalities.

I think people feel condition to be a neutral word, neurotype is OK on AFF but maybe not understood as well in other places related to autism. Neurotypical is by the way a word that has been invented in autistic sub-culture and has apparently entered scientific language.

It is good that you are seeking the opinions of autistics in this. I was diagnosed at age 10 through my school, and I have dealt with a number of people who told me what I was feeling, or what my actions meant, and there was no connection.

Also be mindful that autistics tend to have very different body language. We might not use facial expressions typically, or tone of voice or other such gesticulations. I cannot even recall how many times I have been told that I "look sad" - even when I was fantasizing about having my own theme park or going into space, or some other such daydream.

I have also been told that I look untrustworthy because I can't look people in the eye, and my last speech therapist tried to force me to use eye contact. Been there, done that. I have tried, it just causes a lot of stress and makes it virtually impossible to understand spoken language.

It's really not worth it to make eye contact, when instead I could just explain to my friends and new people that I don't usually make eye contact so that I can listen, and to focus on my own words, so I don't make rambling or nonsensical sentences. I have a short enough working memory as is; making eye contact is about as much of a stessor/distractor as pinching my arm and making me recite the ABC's backwards...another thing I can't do, though I imagine that a number of neurologically typical people would have difficulty with this as well.

He may come back reading, but not necessarily replying.

Actually, I wrote it. Perhaps my signature quote threw it off.

Let's see:

Let me start out by saying that I am a diagnosed aspie (just last year). As a child of the 1950s and 1960s, I was subjected to all sorts of mental treatments for my supposed schizophrenia (the most common diagnosis of aspies under the DSM-I and DSM-II). Today, I am a tenured college sociology professor.

Me? I can't be diagnosed autistic, as I am not defective.

I am gwynfryn, and I am autistic; and you can reach me on gwynzkind@yahoo.co.uk

"Self-diagnosis doesn't tell a thing"

That's how I read it.

Jos,
I think you're coming at the concept of diagnosis in entirely the wrong way.
The single most important thing is whether or not the diagnosis is going to help.  It doesn't matter whether the person is "really" autistic or "really" NT.  If someone is NT and you treat them like an autistic, they're not going to benefit from it, and same goes for treating an autistic like an NT.  So really, you shouldn't be looking at "does this person fit x criteria?" You should be looking at "person has x trait which will benefit from being treated y way" and if you come to the conclusion that this person's traits benefit from being treated as autistic traits, then call them autistic.  If they don't, then look elsewhere.
Take me, for example.  I'm outgoing, I'm generally OK with people, I make eye contact most of the time.  However, I was nearly kicked out of school, I'm terrified of phones, I can't go anywhere new unless someone leads me, I can barely manage to take a shower more than once every two weeks, I frequently run out of clean clothes because I couldn't manage to do laundry, I am underweight and lost weight for years even while I struggled to gain weight because I forget to eat, and I can't make new friends unless they go out of their way to be nice to me.  Obviously, I'm not normal.  So what do you do to help me?  Well, let's look at one problem- let's start with the group of things I have trouble with that all fall under the umbrella of "Executive Function" tasks.  Obviously I'm not "lazy" because even a lazy person would be able to remember to eat and would consistently eat more than 300 calories a day (which is all I manage some days).  Furthermore, I clearly want to be able to do these tasks and am miserable not being able to do them.  So something is making it harder for me than it would be for a normal person.
Now, if you don't already know what executive dysfunction is, I suggest you watch this video:  http://www.youtube.com/watch?v=9fUi1EYq6Rs
What Amanda does here is a more severe version of exactly the same problem I have.  It takes a lot of concentration to do something once I've initiated it, but for me the biggest problem is starting it in the first place.  For example, I may get out of bed in the morning and say, "I am going to go eat breakfast".  But there's a lot involved in that.  I could get sidetracked into something else anywhere along the way to the kitchen or even once I'm in the kitchen, although usually once I have food in my hand I can handle the rest.
So you're going to need to gear your way of treating me towards helping me find ways to lessen or deal with my executive dysfunction.  The easiest way to do that is to treat me like an autistic person, since it's the same problem typically found in autism.  If you treat me like I'm lazy, punish me for forgetting things (which, incidentally, a teacher did to me once, resulting in a nasty regression, spiral of depression, and nearly getting kicked out of the school), or worse, assume the inability to eat is a sign of anorexia (it isn't- I actually am terrified of losing any more weight), you're going to make things much, much worse.  So, even if the executive dysfunction were in and of itself the only autistic trait I had, meaning that I'm "not really autistic", it's still best to treat me like I am autistic.  This is where you see that the diagnostic labels are, really, kind of silly and don't need to be "100% accurate 100% of the time".  After all, what your job is is to help people.  And I can't count the ways self-diagnosing as autistic has helped me overcome my problems.  It's probably one of the best things that ever happened to me.  No, I don't fit the criteria 100%.  That's not the important part.  The important part is how it's helped me overcome the significant problems I face and understand myself, and how it's led me to be part of a community that's like me and understands me in ways even the best meaning and most knowledgeable of NTs usually don't.
So that's where we're coming from.  Don't dismiss self-diagnosis as delusion.  In many cases, it's the best way a person has of helping themselves when no one else can or will.

We definitely throwed some unnecessary nasty comments at him.

Ok, ok.

Just saying he was probably eager to learn that's all.

It's OK Jos, stick around.  I think just about every member of this board has been personally attacked by other members of this board at some point.  We never all agree on everything.  Personally, I try to be rational when discussing my differences with someone, but not everyone here shares that philosophy, either.  The best thing to do is just ignore them.  I have been here for years now, and even after some pretty vicious attacks I still came back.  The rest of what goes on here is what makes it worthwhile.

Sometimes I need things rephrased in order to understand them.  Is what you're saying here essentially "If you don't think it's a disorder, a diagnosis won't benefit you because it only focusses on faults"?
If so, I think I have to disagree.  I don't view AS as a disorder- but I don't think it's all sunshine and roses, either.  We have problems, of course, and an experienced diagnostician can recognize those problems and help with them.  If someone comes to you because they're lonely, you don't claim you can't help because "loneliness is not a disorder", you provide help for the problem they are experiencing.  It's the same way with AS, except that AS is a collection of positive and negative traits that together can provide you with a framework for understanding where the problem(s) the person is experiencing come from and how to approach them.  For example, loneliness again, except now the person coming to you about it is also diagnosed with AS.  Knowing that, you know you are going to need to use different methods to solve the problem the person is experiencing.
And if someone comes to you and says they want a diagnosis but they don't need any kind of help or treatment, then probably they just want answers- or they are only interested in knowing so they can solve their own problems, or understand their past better, etc.  Look at it this way:  If they are coming to you for a diagnosis, then there must be some reason for it!  Otherwise, why would they bother?  And if you want to know what that reason is, you're just going to have to ask them and then listen to what they say.

Yeah, Jos, stick around, I say!
I think that conversations of this sort are good.

(me--undiagnosed, not having major problems right now, have managed to work through most of the AS-related problems I had when younger--at that point assessment might have done me some good but it wasn't on the radar).