Awaiting diagnosis. Feeling broken and insecure

[CC Witch]

Hi! I'm just trying to share my situation with people who might actually understand it.

I'm a 26 years old female. About a year ago I casually overheard a radio show about ASD in girls and how it manifests really different than in boys. It was weird, but I could really see myself in what they were describing. I felt almost as if they were talking about my child self.

Previously, I had had all sorts of alternate explanations for some traits. I used to believe that I had self-taught myself to read at an early age because I was smart. I used to believe that my social awkwardness, my inability to make and keep friends and to play normally with other kids was derived from the fact that I had been an only child, and also overprotected by my parents. It was like so obvious: "Duh, my parents didn't want me to play with anyone and would hardly allow me to visit other children's homes. That's why". I used to believe that my lack of coordination, my poor physical skills and some difficulties I have up to date following verbal instructions related to space or directions were also because my parents had overprotected me and because they didn't allow me to crawl as a baby.

Other things such as my obsession with world's flags and my habit of collecting advertising and deposit slips from different banks... I thought that was only because I had always been a little eccentric.

At that moment I was listening to another explanation that seemed to encompass all those subtle abnormalities.

But the trait that puzzled me the most was hearing that girls in the spectrum can appear really good at social interactions because they mimic others. I had previously realized something that I hadn't been willing to admit: I have a strong tendency towards imitating my husband whenever I'm with him: I copy his gestures, his word usage, his manners, his patterns of speech. I can't help it.

I didn't give a lot of importance to the radio show, but I did keep thinking about the imitation thing. I started to observe myself more and to remember that I actually have mimicked all the people I've been closest to. Whenever I really feel like I can "connect" with someone, and I like that person, I mimic them and everything flows. It feels like a real interaction in which I feel comfortable. But, whenever I fail to understand the other's speech patterns, I can't mimic them and I delve into my primary awkwardness.

As I became aware of this, I thought "Well, maybe I do secretly have ASD". But then again, didn't conduct more research or give it a lot of importance.

Then, a couple of weeks ago, I went to visit my parents. I no longer live in the same city as they do, and the relationship with them has been somewhat difficult in the last ten years. I guess, as I mentioned before, I always held them responsible for overprotecting me and not allowing me to be at equal conditions with my peers, which I always thought was the reason why "I was different". That has been the root of a lot of problems that we've faced.

So, I went to visit and the eternal topic of our eternal problems came up and suddenly my mom asked me if I knew what Asperger syndrome was. I said yes. She said she suspected I have it and I said: "Well, I slightly suspect it too".

They offered to pay for a private evaluation if I was willing to get diagnosed.

I remember having a lot of discussions with my parents when I was still living with them, especially with my mom, which is the most emotional. Usually, she would confront me about having done something "wrong" and she would try to explain how I had made her feel. At first, I would try to rationally expose my version of the story. As I failed to give her an emotional/empathic response, she would start to get frustrated. She would cry and sometimes shout. I would freeze, especially if she was shouting. I would sink into an emotional blockage and end up not knowing what the hell to feel/respond/say. Then she would say I didn't have any empathy, sometimes she'd say I was a sociopath.

So, somehow, my parents had come to the conclusion that ASD would actually better explain those episodes. And, in general, my impaired empathy, my mimicking (they've been noticing that for years), my failure to stick to one job for more than a year despite being highly intelligent, my failure to keep friendships, to show sympathy when someone is in pain, my high sensitivity to light and textures in the food, my inability to stay quiet in a chair and to keep my fingers not playing/making noises with whichever object I can find on the table, etc.

I accepted to get the evaluation. I went to the sessions with a neuropsychologist, all in the week I spent with my parents in their city. I would say I did it carelessly. Like "yeah, let's find out, why not?" I wouldn't say I did my previous research, thought about it a lot or actually build my case with examples and evidence. Everything was quite fast for me to process it.

Also, the neuropsychologists didn't ask me a lot of things. We went through the cognitive tests, the Minnesota test and a couple of Asperger questionnaires for me and my parents. That was all.

It was until after finishing the assessments and coming back home that everything started to hit me. Was I really waiting for a diagnose about possibly having ASD? In which moment this had become so real?

I began to compulsively research and think and relive episodes of my life that would fit with the possible diagnosis. Others I find that don't fit. And I mainly feel lost and confused because:

1. I fear I didn't give the neuropsychologist enough information. Plus I'm an adult and I'm female and I mimic and I seem to be coping well with life in my own terms (self-employment, marriage with a man that has a lot of Aspie traits himself, I've turned my obsession for words and foreign languages in my source of income, etc.) So, what if she misdiagnoses me?
2. I fear a positive diagnosis. I fear that would force me to reinterpret my whole life and I certainly don't want that emotional stress.
3. I fear a negative diagnosis because, now that I have researched all this and thought about everything and found me a lot of traits... if she tells me I'm not an Aspie, then why the **** am I so weird?
4. Since I seem to have a lot of abnormalities, then, what if she diagnoses me with something different and scary?

So the waiting is killing me and I haven't been able to function properly. And I really don't know how to calm myself through this process.

 

[Otenba]

My situation has some similarities to yours, but also plenty of differences. I definitely do understand how you are feeling as another late recognised woman who is also waiting for assessment. I'm glad you've had your assessment though, and I hope they don't keep you waiting too much longer with the results. You started the process for a reason after all. I'm not sure how I will respond when my assessment time comes, but I plan to take things one day at a time and continue my education about autism. Understanding ourselves will take time so it's important we don't try to break it all down at once. I've not yet even had an assessment appointment and after all the research I've done, I've already started experiencing grief... I hope that after assessment and results, I'll be able to move on with life quicker than I can currently. I hope you can too. Best wishes and hope you get the result you can make peace with.

 

[Gracey]

I too feel similar @ccwitch.
A lack of definition or structure can encourage fear to run rampant.

Team fear up with imagination and research and we may start to distrust ourselves?

Look at ‘fact or opinion’
What do you know to be a fact?
- consistent behaviours, habits, interests, reactions?
They happen, it’s real, it’s fact.
You don’t make these things up, they happen consistently.
Fact.

You’re not broken in any sense of the word. Far from it.
But I do know what feeling broken is.
I think I’ve used the term “shattered and scattered” before now.

I too have worried about how I may be labled by a formal assessment.

Can someone really get a true measure of ‘me’ and make an assessment after a few hours and some tests when it’s highly likely I’ll be fuelled by adrenaline and giving my best performance of societal-normality.
which is a bit of a bonkers thing to do but goodness-forbid anyone see what I don’t want them to !

Which in itself could lead to a different diagnosis?
That ‘scarey diagosis’ Of some other condition is only scarey because we haven’t researched it yet?

Perhaps the only things you’ll need to re evaluate are how you move forward from this point?
Rather than your whole life to date?

You asked how you might soothe yourself?
Use what’s worked for you to date.
What techniques have you practiced in the past?

Try not to be afraid and trust yourself.

 

[LiberationBattle]

The way I see it, you’ve already proven that you are a functioning human being in that you have acknowledged your insecurities. Those who act like nothing wrong is happening in this world are the abnormal ones. We have destroyed this planet with greenhouse gases, landfills, and gasoline.
I’d be surprised if you didn’t get a positive for ASD. It doesn’t mean you’re dysfunctional, it just means you do things in a way that most people are not accustomed to.
Took me far longer than I’d have liked to ride a bicycle and I refuse to drive, and I’m doing okay. I have my own quips with my family too. I feel I lost a bunch of my youth because nobody really taught me how to roleplay without fear of rejection, so I isolated myself.
But I’m learning little things day by day. I spoke for forty minutes straight and received a B in communications, I speak on the phone, and now I’m trying to get my hands on an electric jack certification at work.
Reality may be “stranger than fiction”, but being an ex-biology major, I can tell you that life also doesn’t “go against the grain”. You will not suddenly become aware of some subconscious demon because of a test, and whatever the results say are for you to benefit from in the end. You are uncovering a buried treasure of possibilities, not signing a last testament.

If the results are positive (and they sound like they are), then “campai!” to being awesome!

 

[LiberationBattle]

Also, Code Geass is an all time fave!

 

[Ocean Swell]

Diagnosis is a difficult topic. I wanted to pursue it, but the task of proving to someone, behind all my coping mechanisms, I’m on the spectrum, didn’t seem worth it. Also a therapist I was seeing helped me see that a diagnosis can not do much other than validate what I now already know.

In addition, if the diagnostician is incapable of an accurate assessment, how will that help?
Because the neuropsychologist can be wrong.

I get that you are feeling broken. This awareness has shattered my sense of self, and I’m now more acutely aware of my awkwardness in social environments.

 

[Thinx]

Hi CC Witch welcome here. Yes I get what you mean and do you think maybe the context of being with Yr parents and them suggesting this has increased your angst? Neither of my parents would have noticed such things, because of it being an earlier time and I think my dad was Asp too and my mum on the narcissistic spectrum. What about yours? Your mum seems to have focussed quite critically on aspects of how you were and labelled you negatively back then. This is likely more about her than you. See her from yr adult perspective and what do you see? Parents are fallible and flawed. However they are often trying their sometimes misguided best. You could do some reassessing there too perhaps and feel less judged and more confident in who you are independent of their views wishes or reactions.

Diagnosis is a choice plus it's fallible. But you had more or less self diagnosed anyhow. And also, although there's still a diagnosis available this is now being seen increasingly as a difference. That's how I see it. A different brain. It's an interesting journey and there's plenty of useful information and threads to read and respond to here. I hope you enjoy it here and find the site supportive.

 

[Progster]

I can relate to a lot of what you write, as my experience was similar:

Previously, I had had all sorts of alternate explanations for some traits. I used to believe that I had self-taught myself to read at an early age because I was smart. I used to believe that my social awkwardness, my inability to make and keep friends and to play normally with other kids was derived from the fact that I had been an only child, and also overprotected by my parents. It was like so obvious: "Duh, my parents didn't want me to play with anyone and would hardly allow me to visit other children's homes. That's why". I used to believe that my lack of coordination, my poor physical skills and some difficulties I have up to date following verbal instructions related to space or directions were also because my parents had overprotected me and because they didn't allow me to crawl as a baby.

In my case, I was brought up by my grandparents until I was about 6 years old, then I went back to live with my parents. My bahaviour was bad - I had a lot of meltdowns, social problems and refused to wear certain clothes, so the explanation was that my grandparents had spoilt me and hadn't been strict enough with me. So excuses were found for a lot of my turbulent behaviour, which, in retrospect, were ASD traits. I was also reading at an early age, and was said to be very intelligent. For years I and my parents wrongly blamed my grandparents for my social difficulties, thinking that they had caused them. I think this is the reason why I wasn't diagnosed earlier in life.

I fear I didn't give the neuropsychologist enough information. Plus I'm an adult and I'm female and I mimic and I seem to be coping well with life in my own terms (self-employment, marriage with a man that has a lot of Aspie traits himself, I've turned my obsession for words and foreign languages in my source of income, etc.) So, what if she misdiagnoses me?

This is also the case for me - I have an interest in languages, I'm self-employed and use my languages in my work, have a partner with one or two ASD traits - I received a diagnosis, what helped was my mum's support at the interview, but also I was in a really bad place at the time of diagnosis, because I had depression, severe anxiety at work and was unable to continue my job. I also gave the psychiatrist some notes giving details of traits and why I think that I have ASD and need the diagnosis, with examples from my life. Don't worry about giving enough details - if they need more information, they will ask for it. Also, nowadays, clinicians are much more aware of ASD in females - they are aware of mimicry and other coping strategies that females with ASD learn in order to cope and fit in.

 

[Mary Anne]

Just wondering if you took that online “ Aspi Test?” I did not know of it, and maybe you don’t either? It was brought up in another thread here and I found it interesting. I disagreed with my results, but then, not sure if I answered all the questions right, so will take it again.