Borderline Aspergers diagnosis

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Hi!


This is my first post in Wrong Planet. I've been reading some threads for a while here, but this time I would like to hear some thoughts regarding a diagnosis i recently got from a Psychologist. So thanks in advance. Sorry for the wall of text/bad grammar and thanks in advance for your advice/opinion. I'll do my best to summarize my story:

Around 4 years ago I came across the Aspergers Syndrome while trying to identify the cause of my eccentric way of being. I read about every other psychiatric disorder that would relate to my symptoms and peculiarities. Although I found around 5 other disorders that shared some similar characteristics with my case, Aspergers was definitely the one that described me the best. It was really surprising for me to find a condition that described me almost to the smallest detail and at the same time covering broad areas of functioning which in the first look didn't seem to have a relation between each other.

So around 3 years ago I got a referral to a psychiatrist who was specialized in diagnosing ADHD and ASD in adults. After a long wait I spoke to this Dr. and had a very bad experience since I notice that he had a very orthodox view on ASD and he would only diagnose people in the most affected part of the spectrum. After this I decided that I needed to find another specialist and that I would have to pay for the diagnosis since he is the only person in the city I live in who is covered by the health system.

After saving the money for the diagnosis and finding a psychologist specialized in ASD in adults, I got diagnosed 2 months ago. After a series of screening tests, an interview with my father and 3 appointments where I talked with her and answered some questions, she wrote in her diagnosis: "Borderline Autistic spectrum disorder in the sense of a borderline well compensated Aspergers syndrome" with a note that an ADHD differential diagnosis was not yet done.

Although I think that this psychologist has a lot of experience with people on the spectrum and is very professional in general, im not really satisfied with this diagnosis because I think that there is no such thing as borderline Aspergers since everywhere ive read about it, its thought to be a neurobiological condition. Because of this I think that you either are in the spectrum or you're not. I understand that it can be very difficult to diagnose people in the end of the spectrum because there are a lot of factors to take into account and the specialist can't know with exactitude how the adult was as a child.

Now i really don't know what should I do. This psychologist is one of the best in my city to diagnose ASD. I think that in general the psychologists and psychiatrists in Germany share a very orthodox opinion about ASD and are only willing to diagnose people who are obviously impaired in all areas, maybe because they don't want to take the risk of making the wrong diagnosis. Could it be that its impossible to be 100% certain when diagnosing adults who are in the end of the spectrum and have developed coping mechanisms so that they seem to be normal in the surface? What do you think about all of this? What would you do in my case?


Thanks again for taking the time!

Hm. It seems simply to be an elaborate way of stating that you are within a diagnosis for Autism Spectrum Disorder at the end of the spectrum that was formerly Asperger Syndrome. Of course, she might be willing to be more explicit about your diagnosis after the ADHD assessment is completed. Meanwhile, if I were you, I would plan a way to ask her what she meant in her written assessment emphasizing what you just described in your topic post. If she was still vague, I would ask her yes or no questions such as "Does this mean I have Autism Spectrum Disorder, or not?" If she answers "no," ask her to explain why you aren't autistic. Diagnosticians should be able to explain their diagnoses.

I believe that if you on the spectrum, even on one end, you still have autism. I was diagnosed with Asperger's when it was still a diagnostic result. Now, they don't differentiate between Asperger's and autism. Autism is autism, period. I have found that as I learn about what autism is, I have all of it. That doesn't mean that I'm severely affected by parts of it, but I certainly do and can relate at a deep level for most if not all the symptoms. You deserve a complete and clear diagnosis...

Thanks for your reply! She also wrote in the diagnosis that she didnt have the tools to do the ADH assesment during the ASD diagnosis. And for me its clear that it has to be done since about 50% from the people with ASD display ADHD symptoms. But i guess the assessment can be done with her soon. I think thats a good aproach to the situation. I will talk with her next week and it seems like a good way of asking her to elaborate a bit more about this "borderline" terminology.

Sorry, but she's correct, it doesn't work that way. The autism spectrum extends into normancy, the diagnosis is based on impairment. There is no specific neurobiological cause for autism, it has a range of causes.

Thanks for your reply! Yeah, that's what I think as well. I also do have 90% of the traits and had them since i was a kid. But maybe one of the issues that the Psychologist had when doing the diagnostic was that i rarely show any difficulties in communication when talking 1 on 1 with people. And it was easier for me to talk with her about Aspergers since i have read and thought about this topic for hundreds of hours. But I'm a completely different person in a random social situation... And I think that the impression that the specialist gets of you can be a decisive factor on how impaired he thinks you are in a day to day life.

Thanks for your reply! But i dont mean the causes, i mean the consequences. From what I know, the autistic brain actually works in a different way. Its thought to be "wired" differently. Its true that to this point it can be hardly proven with todays imaging tools, but i believe that most experts do think this way.

People think differently from other people.

People think differently from other people.[/quote]

True.

Since we're both European and about the same age, I totally feel you!
European psychiatrists/psychologists don't seem to have noticed that there is no longer an Asperger's Syndrome diagnosis, but now it's just Autistic Spectrum Disorder (as of May 2013, since DSM-5).
I even had to bring this up last week with my therapist, so that she knows that I don't believe in the AS label. I would compare that 'borderline' thing to the fact that she told me that I could even have just a 0.5 ASD Level (I know it's figurative speech).

I do think there are grey areas when it comes to diagnoses. Doctor create these boxes with labels we have. They make the criteria and people have to meet those requirements to have it. But there will be people who will slip between the cracks because nothing will fit them. They have impairments of a condition but not enough for the diagnoses so what happens? Should these people not get diagnosed because they didn't have enough to fit the criteria?

"I'm so sorry, you have symptoms of autism but you don't have enough of the impairments to meet it so you are not autistic, sucks to be you so you are going to have to suffer now with your impairments." No, I doubt any doctor will do that to their patient if they are suffering so they will just give them the diagnoses so they will use it to get the help they need. Unless they don't need a diagnoses, they won't get diagnosed if they don't have enough of the symptoms to fit the criteria. I am sure those people out there exist but they might not admit it because they might get accused of being frauds and have their problems be trivialized and people using it against them including places. "Oh you are not true Asperger's so we don't have to accommodate you."

I used to believe that the Broader Autism Phenotype (BAP) diagnosis was meant to include these wayward autistic characteristics and the individuals who experience them. Unfortunately, my presumption was wrong. BAP applies only to nuclear family members of known autists. Even then, many fewer diagnosticians understand BAP than those who understand Autism Spectrum Disorder.

It seems to me that BAP ought to include those individuals with some autistic behaviors, characteristics and comorbids, but not enough to earn them an ASD diagnosis. This would be kinder and resemble the inclusivity that the spectrum has enjoyed. However, I suspect that this won't be considered, and these "almost autistic" individuals will be tossed a few disparate diagnoses as if they don't qualify for anything better. Too bad.

I think it's difficult when you live in the uncanny valley period. It takes a lot of observation to connect the dots. And, many think that just because you made it to your 50s and have held a job or gotten married that you are 'well compensating' and therefore do not meet the criteria.

Yet, they do not see spectacular implosions or failures. They only see the successes.

Let's see...married three times. Currently separated. No actual success there.....


Let's see, have held jobs.....have difficulty getting and maintaining them. The only reason I have held on to the teaching job is that is about all the responsibility I have. But, last semester, 1 class. This semester, the 1 class I had was cancelled on the 18th.

So, currently, effectively unemployed.

Oh, yes. That was my first (mis)diagnosis where the clinician had so little experience with autistic adults that she "saw no evidence" of the autism that, 19 months later, was found in abundance during my second diagnosis. The lack of knowledge regarding adult autism among many clinicians is too frequently staggering.

And, some of them are just incompetent. When I was going through my diagnosis, I set into motion plan a and plan b.
Plan a was to find a place that my crappy insurance would be taken. Plan b was to pay for a diagnosis.

Took forever for plan a to happen so proceeded with plan b.

Plan a eventually came through and I took that appointment because I did not know if I would be able to finish paying.

Plan a was a mess. Very bad environment, noisy and chaotic. They did not call me even though I was there early and officially checked in. 25 minutes later they asked if they could 'help me' because I was starting to overload and was really stimming like you wouldn't believe. Sheesh.

Anyway, wife is Chinese. The Doctor was Chinese. So, in the official report, it said I had to do some 'self reporting.' I don't know why. We had two fluent Chinese speakers. What the hell did I have to self report on?

So, I did finish paying plan b. I got the diagnosis from people who did take time to do things properly. No rush job and more extensive testing.

The moral of the story is that it is difficult. Some are just not competent. Some are just overworked. Some do a good job.

You have to be the one to decide if it is right or not and pursue things. And, if you are not married, they should interview family members.

Indeed. The diagnostic clinic where I was assessed and diagnosed is part of a larger university medical facility. Immediately after my diagnosis, one of the diagnosticians asked if I would like a referral to attend the medical clinic for ongoing health care for autistic clients only. It seemed a nice fit within my existing health network and would offer knowledge about autism to boot. Well, my intake visits made it abundantly clear to me that the medical clinic was staffed by interns (think 24 years of age) who might as well have been barking out orders to me about what expectations they had of me. Over the course of my three-hour intake visit, things went from cordial to a war of words, in my opinion. I quit the medical clinic the same day I was interviewed. I followed up with the diagnostic clinic staffers (who apologized profusely to me about what seemed to me to be enthusiastically indoctrinated interns' behaviors and statements) as well as the medical clinic's director (who never replied to me despite my two or three attempts) about my concerns.

Sooo, for too many clinics, check-marking littles boxes seems to me to be why they exist. Scheduled visit? Check. Arrived on time? Check. Payment and co-payment processed? Double check! Clients' concerns? Not our problem. Unfortunately, I believe that even world-class autism clinics fall victim to this kind of Orwellian management style.