Questioning my diagnosis

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For me I would like to be for sure because all my life I have felt different, odd, and strange. Not in a big way, but in small ways of thinking and acting. I’ve always been super sensitive to things, to everything it feels so raw to me. So, to know, for sure, for myself, I would feel this peace knowing that I’m not just some strange person alone, I have others with me, that are like me. I just have that doubt. That I’m not sure part of me that will always try and disprove me. Does anyone else feel like the world is just too raw? Does it feel like your made of glass and could shatter any second because the world feels so loud, and insane, like there is no order?

It would be nice to have a 100% accuracy test to tell you, us that "this is you" but it's not always so neat and tidy for the spectrum. You do have a diagnosis from your mental health doctor, you have confirmation from the online tests, and in my opinion as well as the others that have commented you do appear to be one of us. You could pursue getting formerly tested if you want, if you think it would make enough of a difference but I personally think you already have your answer. You just need to decide that it is in fact your answer.



There are certainly those of us that feel that way. That tends to be how I view big cities in particular. I would say I find much of life rather abrasive.

You had no assessment? Was the doctor who declared that you have Aspergers from just talking to you briefly, a psychiatrist? Do you know what your official diagnosis is classified as? Is the diagnosis coded using ICD or DSM diagnostic criteria?

Also, you said you can be a "mess" when you're alone. Does that also mean you feel unease when you're alone or you feel at ease when you're alone but you just behave in ways you don't when you're around other people.

Yes, he is a psychiatrist and he didn’t give me any assessment. We talked about it with him, me and my mom and after that he said I had it. A few weeks later I asked for a written diagnosis (for school) and he gave me one with Aspergers Syndrome on the paper. I looked it up and it’s an ICD code. What does that actually mean?

Also, it is hard to say if I feel uneasy and at ease when others are away. For the most part when other people are away, I feel at ease because I feel like I can be myself more. That being said I have a deep connection with my mother and when she leaves and I’m alone then I do feel a bit uneasy because I don’t have anyone to talk to. When I act out, I usually pretend that I’m a character in one of my stories that I have created. Does that make me crazy? Does anyone else do anything similar?

ICD codes are used by doctors, health insurance companies, and public health agencies to represent diagnoses. Every disease, disorder, injury, infection, and symptom has its own code. I believe if you look up your code you can see the specific diagnosis.

I should have asked this before (d'oh), but do you know what the criteria is for Diagnosing Aspergers or ASD? In order to make a diagnosis the mental health practitioner uses the criteria with the DSM (for specifically Aspergers you'd refer to the DSM 4 as it was removed and put under the ASD umbrella in the DSM 5). It does seem rather bold of the guy to do that with just one interaction, but if what was discussed with him put actually did put you within the DSM guidelines that easily I can understand it.

For myself I can not say I do anything like that now...when I was younger somewhat. Though I was more inclined to run through it all just in my head like an interactive movie. Your tendency for the hyperactive probably part of what pushes you to be more physical... I have no idea if it's an ASD thing or not but I don't think you're crazy.

No, I act out scenarios all the time and have done so my whole life. In my earliest memory of doing this, i was a

horse. Now I am a soldier, Prime Minister, I travel, whatever. I have noticed that in these scenarios I am a

different person in that I am comfortable around other people and am brave ect. They provide me with a break

from myself. I don't use the scenarios from the stories I write though, in those my characters are flawed and

vulnerable.

I felt like glass when younger particularly 17-25, I thought I would break. The best thing about ageing has been

getting over this. Problems come along and it's all a f**k**g disaster but you get through it and then you're like

''I didn't break."

That’s awesome that you did the same thing I did and do. The characters I play are also good with my pretend people around me. When I was younger, I would always watch Sabrina the teenage witch and then after the show I would pretend to be a powerful witch.
I’ve always had the feeling of being like glass or feeling weak when I’m around people. People behave differently then how I think they will so it's hard to understand what they are going to do. That’s one of the reasons why I’ve never gotten a job, people scare me.

So I have trouble with sound, smells, and taste. Loud or squeaky (like leather on leather sounds) cause me pain, smells (like the smell of breakfast foods) make me gag, and taste is more on the texture of the food, but because of that I’m really picky. Anyone else like this?

I solved my food issues by learning to cook stuff exactly the way I like it.

Have you considered volunteering for a research study on autism? This may be a way to get a highly detailed examination that most Aspies can't afford.

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To Steven, your message intrigues me. I think most people including non-autistic people have some version of this, in some way or other, in their own way. My question is, do you think that the smell of breakfast food making you gag is genetic or has that kind of response been caused by something else? If I write here more, I will maybe give some examples from my own personal experience.

I don't know if it's genetic, but I've had it for my whole life. If it is part of my autism then it is only a small part, the sensitivity to sound and texture are more of a nuisance.

Sensory oddities aren't unusual with Aspergers. I have a sensory issue as a co morbid. I was much worse as a kid but I still don't do well with loud, typically prolonged sounds (like a band playing at an indoor venue). I also have a hypersensitivity to certain smells, I'll get headaches or even sick. There's some things around food, I use to really freak out if different food items were touching each other. I still don't like when I get taste transfer...or like if bread gets soggy from another food. I have trouble with touching certain textures too, I wouldn't say pain but my system kind of spazzes.

I have seen an account of an Aspie who couldn't take showers because the water would hurry them.

With me it’s loud noise from people, like if someone even raises their voice a little its not pain that I feel but I can over react, and start crying or get really stressed over it. Loud sounds from a band or orchestra can send me over the edge also, although I have been able to sit through the noise before. When I go to the theater or anywhere noisy, I have headphones that I wear that help with keeping me calm. Smells are a different matter. It’s really mostly to do with food, but it can be other things as well. Some perfumes are unpleasant to me. When it comes to food touching, I never had a big problem with that, but if it was a food I didn’t like touching the food I did like, I couldn’t eat it at all. I’ve gotten better at being not as sensitive over that over the years.
Do you have a sensitivity to the texture of paper? I’ve found that if I cut my fingernails or if my hands are too dry then the feeling of paper on my skin is unbearable.

This sounds very much like my life at your age (I wasn't diagnosed until my forties). Until my diagnosis really sank in, and I had learned so much on forums like this one, I led that kind of "double life"; but I didn't understand just how deep it went. If we assume for argument's sake that the diagnosis is correct, then you have been leading that double life since you were an infant - it is your "normal". Any other way is inconceivable. I do still live that way to a certain extent, but I'm slowly finding ways that suit me better.

Right throughout your development as a child, you would have been learning that your instincts could not be trusted, because they led you to accidentally break social rules. So you studied people. Learned how to mimic their behaviour as best you could. This process is no different than for any other child, except that the cognitive differences of autism can make modelling other people's minds much more difficult. You learn as best you can what you should do in any social situation, and to reproduce it; but understanding what people do is not the same as understanding why they do it. So the "simulation" can never be perfect. On one hand, you can never completely fool other people that you're "just like them", and on the other hand, anxiety about instinctive autistic behaviours encourages you to censor them even when you are alone.

"Acting out" or "scripting" might not just be fantasy or wish-fulfillment. I think there can be an element of using it to run thought experiments, to exercise our ability to see patterns in social rules. It can be dysfunctional if carried too far - I can spend hours daydreaming about how a social gathering that I have to go to might pan out; but no-one yet has ever followed the imaginary script that I wrote for them. But if it's not getting in the way of anything that you need to get done, or something that you'd really rather be doing, I don't see why it would be any more harmful than being an author or an actor.

My advice to you would be to allow your instinctive behaviours a bit more freedom when you are alone. Some of them may be natural coping mechanisms - to help deal with stress, and to give overworked parts of your brain a chance to unwind. It'll take some getting used to, but you'll have more energy for whatever steps you decide to take next.

Two other things...

1) The anxiety you are experiencing is perfectly normal. Almost every late-diagnosed person that I've spoken to about it has experienced it to some extent - it can be a roller-coaster ride, for sure, but it will ease. Diagnosis or not, you don't have to change anything unless you choose to; and if you do, you can do it as quickly or slowly as it suits you, and to whatever degree suits you.

2) The vast majority of what I have learned about autism has been taught to me by other autistic people in places like this one - virtually all of the practically useful stuff! If you find common ground with people here, and their advice helps you to improve your life, then it just does! Diagnosis or not, you're welcome here; and you seem to be settling in pretty well already!

Loud crowds can bother me, but in that case the noise typically isn't as bad as the feeling of the crowd's energy. I think I'm okay with people's voices now but when I was younger, if a harsh tone or yelling was directed at me it'd take everything I had to not burst into tears. I failed often. Movie theaters have always been abrasive sound wise but I've typically always been able to adjust.


Where I have food smells I dislike I can't think of anything that's caused a problem. I tend to find most perfume/cologne pretty awful. If something you don't like is touching other food, that food has obviously been contaminated lol



Yes! It's not always, but as you mentioned, when my hands are dry. Other 'slick' poor smooth things cause the same kind of reaction. Almost like tiny pin spots of electricity in my hands, that will run up my arms to my head and a general wiggy feeling throughout me. I typically have to grab my hand that's freaking out and squeeze it. The usually helps the feeling subside faster.

I bought special earplugs for musicians for going to theaters. They don't distort the sound. They just make it weaker.