Anyone have problems getting a diagnosis? Need advice...
sem1precious
Emu Egg
Joined: 17 Apr 2008
Age: 48
Gender: Female
Posts: 4
Location: Hopefully Someplace Else Soon
18 Apr 2008, 11:59 pm
I have Asperger's, but I haven't been diagnosed yet. My son has, he is five. I am trying to get my Psychiatrist to give me the stupid tests for it. I have just about every diagnosis that if they just lumped them all together, it would be Asperger's, but for some reason, they keep trying to talk me out of it. Wierdo's.
Here's what I have so far: Generalized Anxiety Disorder, Panic Attacks, Chronic Depression, "overfocused" ADD, flat affect, and sensory issues. But I think that because I can "talk" to them, that they think I'm ok, or something. However, if they were to put me in a room with two or three of them, they would be able to see my problems very obviously. I can seem to be normal when talking one on one, but any more and I get lost very easily. I can also only handle "acting normal" for short periods of time, during which I experience increasing levels of anxiety. I haven't been able to keep a job longer than 3 months. Things that I consider to be my stims are: minesweeper, bejeweled, logic puzzles, sudoku, and I am always wiggling some part of myself or digging my fingernails into my hands, roll my eyes around, and pick at stuff (zits, split ends, etc). I do these during times of high stress, and tune out everything else.
Mostly, I just want to know if anyone else has had problems getting their Psychiatrist to give them a diagnosis.
I really want t diagnosis, because I think I could benefit from some sort of employment services, life skills help.
19 Apr 2008, 12:28 am
You sound like the way that I see myself. You're smarter than the average person, and you have some years of experience trying your best to interact with normal people, so your Asperger's has become less noticable to others. What your psychiatrist is doing with you is what I hope doesn't happen to me. I'm seeing someone next month to get evaluated. The person I'm seeing specializes in Autistic disorders. I'd suggest finding someone like that, a psychologist or neuropsychologist instead of a psychiatrist. I had to see a regular doctor to get a referral to this person from him. The first few people that he tried to refer me to wouldn't take me (two said that I was too old for them, one said that I was too young 
), but we finally got one, and I got an appointment a month away.
19 Apr 2008, 3:17 am
http://www.aane.org/about_asperger_synd ... dults.html
http://www.aane.org/about_asperger_synd ... dults.html
http://www.aane.org/about_asperger_synd ... dults.html
_________________
*"I don't know what it is, but I know what it isn't."*
19 Apr 2008, 3:36 am
A therapist who I saw for just a little while was confused, one day thinking that maybe I had social anxiety, another day maybe attention deficit. He ended up giving me a diagnosis of disthymia (long-term depression--I couldn't convince him that I was basically born like this), for which I saw my regular doctor to get a prescription for Wellbutrin (I still take it because I like it, but I'm wondering about the trade-off of being unable to drink, it's really a toss-up). I don't think that I would have needed it if they knew how Asperger's would provide a connection between my social difficulties and school performance (a connection that I knew existed but they wouldn't consider), and an explanation of how I am in fact different from most people (they seemed to ignore my questions about what was unusual or not).
19 Apr 2008, 9:57 am
Thanks for this link, Belfast. I just read the text and it is by far the best piece I have ever seen on Adults with AS. I still have tears running down my face. I think it should be required reading on WP.
Z
19 Apr 2008, 11:56 am
If that is a concern, I would think it would be entirely reasonable to request to have more than one person present or to bring in a friend/family member who could attest to your difficulty interacting in a group.
I'm getting my Masters in speech therapy, and when treating stutterers, we realize that it is very important to take into account the person's fluency in a variety of situations. For instance, someone can be extremely fluent in a clinical situation, but may be very disfluent in class, while talking with friends, while giving presentations, etc. So it is not only important to take that into account during diagnosis, but also during treatment. We will even bring in outside people for the stutterer to talk to, and will sometimes conduct treatment sessions outside the clinic setting.
It would be a real disservice to assume that they do not have a stuttering problem just because they don't stutter with the clinician. Unfortunately, it doesn't seem like psychologists are as willing to take this sort of information into account, based on what I've seen on this board.
19 Apr 2008, 12:14 pm
yes, im exactly the same. shrinks told me- when i asked about autism, as id not heard of AS till recently- that i was able to interact socially and emphasis with people, and was really verbose ect i 'just' have a personality disorder, ocd, depression, anxiety, blah blah blah
.
took a really handy leaftlet and check list from the uk autism society- How Tow Tell Your Doctor- to new doctor - last one literally laughed in my face, told me to pull myself together- and was ok. sure there will be a link from their site to it- advises you to write a SHORT list with main points, or check off all those which apply to you on their list.
im the same- i can seem reasonably normal with one person for a while, but two- ew- im weird in seconds... noone else really listens, either- freinds- not that i see any anymore- also tell me im 'fine really'.
write your symptoms down rationally and as an easy-to-read list, or print out one from the internet, then beat them over the head with it until they agree !
good luck- you're really not alone.
19 Apr 2008, 2:46 pm
yep. I havent gone to get an official diagnose because in the US it seems anything related to autism = insurance dont take you and jobs reject you. So no thnx.
But what you mention is true. If you look at most of the tests and specialists, they focus on ID'ing the condition on kids. Adults are much harder to diagnose because ..well, because we've been adapting since we were teenagers in order to fit in.
19 Apr 2008, 5:19 pm
Thanks for this link, Belfast. I just read the text and it is by far the best piece I have ever seen on Adults with AS. I still have tears running down my face. I think it should be required reading on WP.
Z
You're very welcome-am relieved to hear that you found it of use, I sure thought it was a great article & I've been putting the link wherever it seems it would do job better than my trying to write something all-encompassing & relevant.
Don't know how one would "sticky"-if I posted it in pre-existing resources "sticky", I worry that no one would bother reading it (or be able to find it any better than if it's just in any old thread). Pass link along to those you encounter online (when it seems appropriate), I guess.
_________________
*"I don't know what it is, but I know what it isn't."*
19 Apr 2008, 8:27 pm
I wonder if the moderators would consider sticking it on "In-Depth Life Discussion" because it deals with how AS can look in adults and how adults have compensated? It also clearly explains why some adults have such difficulty getting diagnosed. I've read a ton on adult issues over the last three years and this article really clarified for me why I have certain difficulties.
Z
sem1precious
Emu Egg
Joined: 17 Apr 2008
Age: 48
Gender: Female
Posts: 4
Location: Hopefully Someplace Else Soon
20 Apr 2008, 9:23 pm
Zonder
My work internet blocks that site for some reason. Is there any chance you or someone could quote the adult living asperger page for me on here?
After reading your response to it, I am very very interested in reading it, as I am an undiagnosed adult with Asperger Syndrome and am having trouble on all sides of trying to get people to take me seriously.
20 Apr 2008, 10:49 pm
wow this hit me hard, I never have been officially diagnosed with autism and aspergers but my family are doctors and they told me i have aspergers, i was mis diagnosed for over 20 years with just the following that was listed below. I wouldn't bother asking doctors or anyone to diagnose you for autism/aspergers cause officially they say you can work, and insurance doesn't cover s**t, even ssd doesn't exist unless you have all of the below in the paragraph below. I don't tell people i have aspergers or autism I just have ADHD, Bipolar Disorder,Borderline Personality Disorder, Obsessive Compulsive Disorder, Intermittent Explosive Disorder, Major Depression, Generalized Anxiety Disorder, Social Phobia, Narcissistic Personality Disorder, Oppositional Defiant Disorder, Sensory Integration Dysfunction and alot more.. if you have these diagnoses you have a better chance on getting on ssd. Get a advocate perhaps a non profit to help you, don't try to get on ssd by yourself, you will geet rejected.
Quote:
"AANE board member Gyasi Burks-Abbott refers to the “Aspergers pedigree” i.e., the number of diagnoses someone has received before stumbling upon Asperger Syndrome. These incorrect or incomplete diagnoses may include: ADHD, Bipolar Disorder, Schizophrenia, Borderline Personality Disorder, Obsessive Compulsive Disorder, Intermittent Explosive Disorder, Major Depression, Generalized Anxiety Disorder, Social Phobia, Narcissistic Personality Disorder, Oppositional Defiant Disorder, Sensory Integration Dysfunction, or Autism: Residual State. There can be genuine co-morbidity (dual or multiple diagnoses simultaneously) but many symptoms can be explained by AS. For many, with the discovery of Asperger Syndrome the myriad of diagnoses fall away, frequently leaving behind the depression and anxiety, often bi-products of Asperger Syndrome."
ButchCoolidge
Velociraptor
Joined: 22 Sep 2006
Age: 39
Gender: Male
Posts: 436
Location: New York, New York
21 Apr 2008, 1:04 am
Wow. You've seriously been diagnosed with all of those disorders? And by the way, there are reasons to seek a diagnosis other than to spend the rest of your life living off government cheese. If you can't work due to your mental health issues, I totally respect that and I wish you the best of luck seeking the help you need, but plenty of people with AS can and do hold jobs.
21 Apr 2008, 2:02 am
After reading your response to it, I am very very interested in reading it, as I am an undiagnosed adult with Asperger Syndrome and am having trouble on all sides of trying to get people to take me seriously.
Don't want to get in copyright trouble for quoting whole thing here-all credit goes to the unnamed authors (from named website).
http://www.aane.org/about_asperger_synd ... dults.html
Hope it's okay...
This information is a review of some of the general thoughts about living with Asperger Syndrome and we hope these will be helpful.
Many adults with AS appear to have a very high level of functioning—but what does that actually mean? It can mean that one functions very well in some arenas and not well in others. Maybe someone does quite well at work because s/he is extremely bright and well suited to the job. For example, an employee with AS may be successful because the work environment does not overload the person’s senses or require multi-tasking, or because the social contact on the job is minimal or highly structured, with clear expectations, or because the people at work are supportive, accommodating, or have similar/compatible personalities. This same person may not have or know how to create or maintain a satisfying life outside of work. Success for adults in our society usually means success at work; success in that arena may mask the fact that they also struggle in some fundamental ways that could be explained by Asperger Syndrome. There are others who cannot function in a work environment, but can maintain one or a few friendships or acquaintances, be a successful public speaker, and live independently. Maybe someone can neither maintain employment nor sustain friendships, but can produce beautiful art (visual, written, musical). There are infinite combinations and all could be considered Asperger Syndrome, depending on the lens through which you look. At AANE, we suggest that the lens be broad enough to accommodate adults with AS who may not “look the part.”
How is it that some adults can present so well? Adults with Asperger Syndrome grew up before the diagnosis existed in the United States; it appeared in the DSM-IV in 1994. The diagnosis may not have existed but the adults did—and they needed to find ways to survive. The adults that I have met are survivors. (See Mark Goodman article I Am A Survivor). Without the neurology that supported an intuitive understanding of social behavior, many adults with AS learned to spend their time observing their environment and the people around them. They tried to make sense of the confounding behavior of their peers and tried to understand why people were always telling them, “You’re so smart, why can’t you just…(fill in the blank): go to a family function and behave (sensory, social and anxiety), complete this work assignment (executive function, processing speed), just do what’s asked of you (illogical, theory of mind), tell a therapist how you’re feeling (reliance on thinking more than feeling). Through observation and trial and error (after error), many managed to survive into adulthood. Some adults with AS develop an understanding of the world around them, a framework of how and where they fit or don’t, learn and apply skills and strategies to use in particular situations, anticipate and manage disturbing sensory input. Imagine how absolutely exhausting it is to do all of those things relying on cognition, not intuition. Nevertheless, after years of applying these skills and strategies, an adult with AS can look pretty good, maybe even “passing”—or almost passing—for NT (neurotypical).
So after years of practice and trying to fit or find a comfortable place in the world, some adults with AS have put together a life and many live with the worry that it could all come apart because of how precariously it is crafted. Working so hard to fit in, to understand or hide your neurology comes with a very high price tag. In addition to the exhaustion, mentioned before, there is often a huge overlay of depression and anxiety on top of the basic neurological condition of AS. It is depressing when there is no obvious place in the world where one belongs; when everyone else seems to know the rules by heart and you’ve never been given the manual. The repeated trial and failures to make friends, work, live independently, manage your own affairs and even succeed in therapy are constant reminders of being “less than;” it should be no surprise that these experiences so often lead to depression. Why not be anxious when “the world outside [your] door is scary”. It is unknown, unpredictable, full of people walking down the same sidewalk that you are, crowded MBTA trains, store clerks who may want to talk to you, sensory assaults and a myriad of things that are not within your control. With a lack of intuitive ability to generalize, every time you go out the front door is a new challenge. More or less neurotypical people do not have to think just to function somewhat comfortably in the world. Many adults with AS operate from a baseline of anxiety. Faced with the additional anxieties that come from living in an unpredictable world, an adult with AS who can look pretty good in one setting can fall apart in another.
And yet with all of these challenges, many adults have learned to approximate neurotypical behavior. Many adults have learned independently what today is currently being explicitly taught to our children with AS. Adults who have learned how to compensate, learned tricks and strategies, crafted some sort of life for themselves, may be denied the diagnosis because they do not quite fit the criteria. They may look too good or, because of the overlays on the Asperger neurology, they look like something else is going on."
Considering the diagnostic criteria for AS, many of the adults that I meet would not necessarily fit the diagnosis. Most adults maintain pretty good eye contact. Virtually all of them have a sense of humor—and a quite sophisticated one at that! Some have had successful careers, even careers that demand multitasking—although the ability to juggle multiple tasks may not carry over to their home life. (Multitasking at work was often driven by an intense interest and a clear road map—a highly structured work environment.) Many adults can take part in the give and take of conversation, taking turns speaking and listening. They demonstrate theory of mind in a number of ways (an ability to put oneself in someone else’s shoes and even empathize). Some have had intense personal connections (positive and lasting or not). Some have good gross motor skills. Not all are good at math and computers! Some are capable of lying (though generally because it is the “logical” thing to do in the situation). Some avoid certain loud noises but gravitate to others. It is especially difficult to diagnose based on presentation in a therapist’s office since that is a setting that would be comfortable to many adults with AS: one on one, talking about oneself, with low environmental stimulation. With anxiety in check, traits may not be evident.
It seems that no one is looking to be in this “club” but many people seek answers to explain the outsider status that has defined their lives. When one welcomes it, it is usually because it fits where other diagnoses have not and because they have endured a lifetime of not understanding why their lives don’t seem like others, why they feel they are “from another planet.” So when someone receives the diagnosis of AS as an adult, s/he can begin to look back at his or her life and understand it in a new light. It may explain some of the successes as well as the many challenges. It is often, but not always, a relief. The self-blame (“How can I be so smart and so stupid at the same time?”) can subside; adults can often forgive themselves for some things that went wrong. They can sometimes forgive their caregivers, parents and teachers, who were also operating without full information. Going forward, they can apply the new knowledge to help avoid previous pitfalls. People don’t embrace the diagnosis because they want to belong—they embrace it because it fits. The difference it makes in someone's life to have this understanding is profound. It provides a community, a place where Asperger neurology is typical and being NT is in the minority.
Where will we be in our understanding of AS in the next 10-20 years? It’s likely this diagnostic area will be further refined, maybe there will be AS subtypes since the challenges that account for the AS diagnosis show up to different degrees in different people. Let us be open to learning from the adults who’ve lived undiagnosed or misdiagnosed and learn from them and their stories of survival. Let’s encourage adults with Asperger’s to understand themselves to the best of their abilities so that they can self advocate, asking for what they need and offering solutions that may alleviate their challenges and leverage their many strengths. AANE will be here as a resource, a support, and a community along the way."
-copyright 2008 Asperger's Association of New England.
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