I think I've been acting this whole time?

[Kristinaiswhite]

Hey, I'm Kristina. Brand new here, but think I've spent my life so far on the spectrum, and I'm so damn good at it, that NO ONE has noticed.
The recent realization (at 24) has been insightful, relieving, exciting, earth shattering, and further isolating.

I've spent 6 or 7 months researching, to be far more than positive... I've hid it from Annie remotely close to me.. I finally began to discuss it with my therapist and psychiatrist...

What a mistake that was. I anxiously prepared and rehearsed the conversations in my head, I had tons of notes, personal stories and printed research...

I just couldn't be content with a "self diagnosis". For me to actually accept it as "fact" it needed to or professionally confirmed.

Neither doctor would give me the time of day on the topic. The just brushed it off, and gave the generic "you're too normal", "every case I've ever seen is nothing like you", "these 'symptoms' are not severe enough".

But if they only knew what it's like to be in my body... how hard my entire life has been to "be normal". I feel like a computer.. or a robot. A damn good human simulation...

I can't explain why this is so important to know.. but having the opportunity of knowing thrown back in my face has been devastating.

I rarely let myself slip this far into a dark place... but I've honestly never felt so alone. It was like being told I don't fit on this planet, or the autistic planet... I'm just hopelessly floating in space and don't have anyone that gets it... or who I am.. do I even know who I am?

So I'm here..

 

[Streetwise]

They DONT understand autism you need a specialist ,
i personally wanted to know as my gp cant officially diagnose me .
Welcome

 

[Gritches]

Welcome Kristina!

It sounds like you've come to just the right place. We get it, we get who you are. Lots, if not many of us, have similar stories where it comes to acceptance. Good news, there's always a place for you here if you want it.

 

[Streetwise]

I was about 40 when i knew something was different
in the UK some people have waited 50 or more years before a gp said possibly autism diagnosis wait is is officially 3 months usually longer one man waited 24 years

Hey, I'm Kristina. Brand new here, but think I've spent my life so far on the spectrum, and I'm so damn good at it, that NO ONE has noticed.
The recent realization (at 24) has been insightful, relieving, exciting, earth shattering, and further isolating.

I've spent 6 or 7 months researching, to be far more than positive... I've hid it from Annie remotely close to me.. I finally began to discuss it with my therapist and psychiatrist...

What a mistake that was. I anxiously prepared and rehearsed the conversations in my head, I had tons of notes, personal stories and printed research...

I just couldn't be content with a "self diagnosis". For me to actually accept it as "fact" it needed to or professionally confirmed.

Neither doctor would give me the time of day on the topic. The just brushed it off, and gave the generic "you're too normal", "every case I've ever seen is nothing like you", "these 'symptoms' are not severe enough".

But if they only knew what it's like to be in my body... how hard my entire life has been to "be normal". I feel like a computer.. or a robot. A damn good human simulation...

I can't explain why this is so important to know.. but having the opportunity of knowing thrown back in my face has been devastating.

I rarely let myself slip this far into a dark place... but I've honestly never felt so alone. It was like being told I don't fit on this planet, or the autistic planet... I'm just hopelessly floating in space and don't have anyone that gets it... or who I am.. do I even know who I am?

So I'm here..

 

[Kristinaiswhite]

Thanks for the quick responses.
I'm starting to kind of feel like a cat in a cage. It was all good and dandy when I had the answers, and I was going to share them with my doctors (since they clearly didn't see it to begin with). Then I realized there was no way out of the cage (when the docs shut down what I strongly feel to be true). Now I'm kind of losing it. Am I going to be in this cage by myself forever? Should I just stop trying, and go back to it being my secret?

My psychiatrist even said "what would a diagnosis get you anyway?" Teary eyed, and upset I replied "an understanding of myself, who I am in the world, and a reason for why I'm different..." to which he said "well I wouldn't go around telling people you have autism, you might get some funny looks." Of course my response at the time was "well yea, because I'd be lying, since without a diagnosis, I'm not autistic, I'm just broken.."

It took me two days of replaying this conversation in my head to even realize that he was implying that an autism diagnosis is something to be ashamed of.

That's not how I feel at all... it's a piece of someone's identity... that I'm being denied the right to have.

Getting a diagnosis as an adult is virtually impossible, especially in the US...

 

[Adora]

Hi I'm so sorry you are having issues with your doctor,I was fortunate enough that when I was 31 and went to therapy for trauma and anxiety issues that the psychologist that i was seeing had experience and other clients on the spectrum that she picked up on the symptoms in me and I learned from her that I'm on the Spectrum,it must be disheartening for you to know this and to have a rather clueless doctor and it must be frustrating for you because you don't want to "tell the world" about your Autism you just want confirmation on what you already know.

 

[Streetwise]

Yep i was treated as a HYPOCHONDRIAC, if you DONT exhibit classic kanner (lower functioning autism)autism traits
Youre called needy -infer Youre a HYPOCHONDRIAC
one British man wasnt diagnosed til he was 80 ,keep trying but you really know better
youve done the typical research all asds do

 

[Streetwise]

Incidentally werebear another member of ac went a long distance to find a specialist who gave her a diagnosis and shes in the us
Aspergers in the UK DIDNT start being diagnosed til the late 80s

 

[Gritches]

Doctor's aren't always right. They don't know everything, and as you've seen their personal biases can inform their professional decisions, which isn't okay, but it's human nature. I mean, "what would an autism diagnosis get you anyway?" Are you kidding me? What an incredibly ugly and hurtful thing to say. Some people need to be beaten, severely.

I don't have to tell you that it's very hard to get diagnosed as an adult, especially as a female. But you've done the research; if you feel strongly that autism fits with you then that's good enough. Yes, for the reasons you mention there is indeed much value in an official diagnosis. But that's not always an option for everyone, and in any case it's more important what you feel about yourself.

But if an official diagnosis is really important to you, which is totally valid and I totally get, my recommendation is to keep switching psychs until you find one that isn't such an incredible amateur that they can't recognize autism in adult females, because honestly what you describe sounds very typical of autistic adult females. Psychiatrists wish they were real doctors; they aren't. By and large, they're a bunch of boobs whose personal biases inform their professional opinions more so than their whole two semesters of psych education. Don't let those fools tell you that they know more about you than you do, because they don't.

 

[Kristinaiswhite]

I will certainly be visiting different doctors.

Funny that streetwise mentioned hypochondriac.

I've been spending tons of time in many specialists offices over the last 3 years.
Multiple UTIs lead to a hospital admiral with sepsis. GI issues that uncovered ulcers and H. Pylori, and an inflamed gallbladder that ended up needing to be removed. Since that (4 months ago), weird fainting spells, rashes, hearing and vision changes have become an issue. my GP has been hunting for an autoimmune disease. Yet, each and every test keeps coming up with nothing. Thennnn I'm sent to another handful of specialists (neuro, cardiovascular, optometrist, rheumatologist)

Is being hyper aware of the body something associated with being on the spectrum?

 

[Gritches]

Is being hyper aware of the body something associated with being on the spectrum?

Anecdotally (anecdotal because the studies haven't been done and probably never will be), yes, a heightened sense of self-awareness seems to be typical of those on the spectrum.

Edit: also, don't be surprised about high white blood cell counts. We have abnormally strong immune systems. I was once kept in the hospital for observation for a week because my white cell count was alarmingly high and never went down. I guess they didn't get the memo.

 

[xudo]

Welcome

Is it possible to see if there are any autism specialists in your area? Or even better, someone who specialises in autism in females? Most of us here can tell you that getting a diagnosis as a female (especially as an adult) is generally far harder than for males, as we present differently.

 

[Danny 74]

Helloooo kristina.....!

 

[Bella Pines]

Hi Kristina, new here myself with a similar story. Spent about 6 months researching and coming to terms with aspergers and the same as you I found it a relief but yet also quite isolating. I was also a bit disappointed in that all the things that made me special were bucketed together and labelled a disability by NTs.

I'm a little further along in life, early 40s, I have a happy marriage, house, (some would describe as successful) career and 2 fabulous sons.

My self diagnosis was a relief in so many ways. It explained my habits, picking hangnails, the way I dress, pretty much the same every day, my avoidance of social situations, lack of empathy and sensory overload. Also the reason I spend a lot of time acting, playing the city executive, playing the mentor, playing the mum, the manager, the sympathizing friend, the happy wife, the concerned commuter. I also spend a lot of time telling fibs, I tell my colleagues I have to get home, I tell my family I have to work, but in reality I'm sitting alone in a museum or art gallery contemplating life the universe and everything.

However, there are a number of positives that come with aspergers that I wouldn't change for the world. Ability to think outside the box, independence, uncanny ability to spot patterns, ability to take in and make sense of large quantities of data, a human google.

So you are by no means alone, there are more of us than you think, all around.

Clearly the therapists and psychiatrists aren't giving you what you want. What is it you are looking for? Comfort? Validation? Answers? Attention? Guidance? What is it that you are looking for right now?

 

[WereBear]

Hi Kristina,

When I took an online test, having been alerted by the sensory issues described in The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man's Quest to Be a Better Husband, I was certain this explained everything. But it took me dozens of phone calls to even find a diagnostic center. Thanks to this site, I was alerted to the difficulty about adult females, and specifically sought out a center with experience in adult diagnosis, and my diagnostician was a wonderful woman with lots of experience and a son with Asperger's.

Even so, she was cautious about it, because no one would ever know. I'm quirky and enthusiastic and geeky, but no one would ever guess at any social difficulty.

I had to drive three hours, take a hotel room, take the assessment (it took six hours, accept nothing less) and then keep the hotel room for a second night because I was so exhausted.

Here in the US, my health insurance refused to pay for it, and anything I needed because of it, like a weighted blanket, because it wasn't "medically necessary."

And it turned out I didn't have any job protections, like I thought. And I can't get any help with it, like I thought. But I do have Asperger's... just like I thought.

Since the rest of the world is so much more incompetent that I am, I am figuring things out for myself.

In addition, I was so terribly sick. For at least five years. Because I didn't realize my brain was working so hard. I had what looked like chronic fatigue, Addison's disease, and what my doctor worried was an auto-immune issue. I went to a specialist who didn't even want to test me for anything; just load me up with Prozac and Lipitor and Ambien. That was not going to solve my problem. That was just going to mask the symptoms and eventually kill me with awful side effects.

My doctor concluded it was killer stress, and he was right, but the usual options for stress (go out and have some fun!) was also the wrong thing to do.

Now, I am creating a room where I can be alone and work on creative projects. I sleep under a weighted blanket with a sleep mask and use an iPad app called Brainwaves to help me sleep. I eat right for me (Primal/Paleo) and take nutritional supplements to help with the mental and physical stress. I have a mini trampoline on order to help my Sensory Diet.

And I am finally getting better.

So there's hope! There's things you can do!

It sucks that medical science still wants to ignore us and psychiatrists and psychologists are so clueless about mental functioning, isn't it? I had a doctor tell me I only thought that because I didn't want it to be a mental illness of another kind!

But that's okay. We are also good at figuring things out when we are properly motivated.

 

[tree]

 

[Nitro]

 

[Bella Pines]

Since the rest of the world is so much more incompetent that I am, I am figuring things out for myself.

Ha! I think this all the time but get accused of chronic and pathological arrogance if I say it out loud!

 

[WereBear]

Ha! I think this all the time but get accused of chronic and pathological arrogance if I say it out loud!

It's not arrogance if it is true.

 

[Dadwith2Autisticsons]

S

Incidentally werebear another member of ac went a long distance to find a specialist who gave her a diagnosis and shes in the us
Aspergers in the UK DIDNT start being diagnosed til the late 80s

Same with our four year old son at the time. All the general practitioners, pediatricians and service providers (10-12) had no clue what Autism entailed, as all the core symptoms were there if they wanted to look for it, and after we told them about it. Even after we told them our older son had Autism, and to please screen for Autism in Dylan, as he still was nonverbal, had severe eating and other sensory issues, and some routines and atypical fascinations, they still all basically had the attitude, "We cannot evaluate him for Autism. We do not know how too" or "Let's wait until later" attitude.

All they would ever do is look in his ears, up his nose, in his mouth, and check his height and weight, and disrespect us there. He was always between the 1 and 5 percentile! And delayed in all areas. They could not put the pieces together, or want to, as they are not trained to evaluate Autism, or as they are too superficial as Dylan had eye contact, a smile, and had no atypical physical features. He did though do hand flapping in their presence. So, after we self-diagnosed him ourselves, using common sense and after additional research, we took him to an Autism specialist 4 hours away.

We brought video of his behaviors in all environments, and one hundred pages of additional evidence that that specialist looked at in advance of the appointment. This was needed as at the appointment Dylan refused to be examined and get out of his stroller. He sat with his IPad with minimal eye contact and randomly played with his IPad app programs, some repetitively. He would scream at any attempt to get him out of the stroller. That was because this was a new place for him, and a new doctor. It was not his routine to get out and play there, so why would he tolerate or want that? That doctor within 45 minutes of seeing him told us "Your son definitely has Autism."

Our vast family experiences show most non-specialist doctors and service providers to be not at all capable of evaluating for Autism, as seen by their own words and practices, so for those who want formal diagnostics, to rule in or out Autism, go to a specialist with much training in Autism. They are trained to see the fine and even subtle nuances of that condition.