Questions about getting a diagnosis

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Hello, everyone!

I don't know where to put this so apologies if it is in the wrong place. A week ago I wouldn't have thought that I'd be joining and posting on a forum about aspergers and autism, let alone asking for information about getting a diagnosis. A few days ago though a friend told me about her aspergers. She is 28 and was diagnosed two months ago. She'd been seeing a psychologist. The psychologist noticed that my friend rarely knows how she feels and thought this was worth investigating. It eventually led to my friend's diagnosis.

There might not be anything to it but not knowing how I feel is perhaps the core mental issue that I struggle with. I am overwhelmed by other people's emotions: it is as though someone has turned the volume up on everyone's feelings and there is no way I can begin to sense my own. (My laptop was stolen a few months ago and the bookmarks were full of links about how to understand what you and others are feeling.) I told my friend about this and we talked more about aspergers and other signs and symptoms we share (sensory overload, for example). She encouraged me to take an online test. I did the test several times and scored a high mark each time (probable for an autistic spectrum disorder). However I know that neuro-typical people could get the same result and it means nothing by itself. It would explain a lot about my personality and struggles though.

The point: Searching this forum has resolved one question: are a history of childhood meltdowns neccessary for a diagnosis? Apart from private breakdowns and disassociations, I don't have a history of meltdowns. There was a thread about it where many of you said no and that you'd never had a meltdown ever, so that answers that (but feel free to leave a comment on it anyway). The other question is: is it absolutely neccessary to have a parent come with you to the consulation to be diagnosed?

I wouldn't ask my dad (I have several chronic conditions and my dad has told big lies to my doctors about them in the past due to denial) and my mum... I really don't think she'd be up for it. Even if she did come to the appointment, she remembers my childhood very differently than I do. She always thought I made friends well even though I didn't (I felt very lonely as a kid) and I never told her about being bullied. So there is a lot she didn't know or didn't notice. I know it is strongly recommended to bring them, but I don't think I'd even ask my GP about autism if this is the case. (I have a very hard time asking anyone for anything as it is.)

Hi and welcome!

Absolutely not needed, there are quite some people who have only been diagnosed when they were much older. Some even in their 50s or 60s. People with autism find it difficult to communicate and are often 'invisible' to other people, so it's not surprising many people go unnoticed despite struggling to cope with many hardships and uncertainties. Just because other people didn't notice a meltdown doesn't mean you didn't have your share of unnoticed inner meltdowns earlier on.

The easiest tells for autism are exactly the ones you mentioned: sensory overload and unable to understand how a typical person feels or behaves and as a result unable to completely understand how you should behave in a social situation. Together with sensory overload it's typical for people with autism to be unable to filter sensory data as well, in a busy environment do you find it hard to be able to hear what another person is trying to say to you? Do you feel a strong emotional or psychological reaction towards certain sounds, like strongly negative emotions ( pain, fear, anger, anxiety ) toward loud sounds?

Another prime tell is whether you feel connected or not with most other people. Do you understand or can you predict other people's actions, or do you find them extremely confusing? Can you automatically engage in social cues and basically 'go with the flow' or do you feel like you constantly have to think in social situations. There's many more of these typical symptoms that almost every one of us share. But then there are also a share of symptoms that are common but not every one of us has. If you look around here you can find a lot of different issues ( but also joys ) people deal with.

If you feel like you relate to most of the people here I would definitely recommend you to discuss this with your GP.

Thanks for your reply, qFox! That is very reassuring and makes me much more likely to ask my doctor for information. I suppose part of the problem is that I do find it very hard to predict how people will react and I don't like unknowns, which makes it doubley difficult to tell my parents about the conversation with my friend.

Your idea about getting involved with the forum and seeing how much I relate is a very good one. I think I will do that

In a busy environment do you find it hard to be able to hear what another person is trying to say to you? Absolutely. I have become very skilled in faking my way through conversations (or I give up and try not to worryabout seeming rude). Even if the television is on and the volume is turned off, I frequently still can't hear what someone is saying because of the moving images on the TV screen (especially if they are bright and with a lot of action).

Do you feel a strong emotional or psychological reaction towards certain sounds, like strongly negative emotions ( pain, fear, anger, anxiety ) toward loud sounds? Yes, I have always been like this. This is one thing my mum definitely has noticed as I can't be downstairs if she is putting cultery away. She talks about how we'd go to the shops when I was a kid and I'd spend the whole walk with my hands clamped over my ears and cry when busses drove past.

Do you understand or can you predict other people's actions, or do you find them extremely confusing? I can't predict people very well. When I was little I imagined I was from another place, like a fairy or an alien. I guess that's how most of you feel too given the name of this forum!

Can you automatically engage in social cues and basically 'go with the flow' or do you feel like you constantly have to think in social situations? I am better at going with the flow than I was, but it is a lot of effort.

I have had a very unusual life, and my circumstances could account for many of these characteristics. For example, the chronic health conditions I have can make you highly sensitive to sensory input and because my health conditions have been severe I have spent very little time with other people besides my family (literally one visit every few months from a friend). That said, I have friends in almost identical situations as me and they don't seem to have the problems I do.

Thank you very much again for your reply and I will spend some time on the forum as you said. It is an excellent idea!

If anyone else wants to reply, I'd be really interested to know your thoughts - especially about what the diagnostic process is like and what it was like for you. For example, what are some of the main things psychologists look for?

Welcome to WP Angua

Regarding what psychologists look for, they primarily test your ability to use and respond to social cues such as eye contact, recognition of facial expressions, ability to maintain reciprocal conversation, understanding of your own and others' emotional states, ability to use and understand figurative language, etc. They also look at restricted and repetitive behaviours such as unusual or highly specific topics of interest, self-stimulatory motor mannerisms or "stimming" (rocking, hand flapping, humming, etc.), rigidity with regard to routines, tendency to perseverate, or get "stuck" on certain thoughts or topics without being able to let them go, etc. If you get tested using the ADOS (Autism Diagnostic Observation Schedule), they will look at almost all of these traits (without you being entirely aware of what they're looking at, and when), and will score you based on how neurotypical or autistic your responses to their social "presses" were. It's administered in such a way as to not feel like a test, but like a series of games and conversations. They probably won't announce that it's happening, and they obviously won't specify when they're pressing for specific behaviour. It's basically like a naturalistic observation of your normal behaviour, with "pressure points" that steer your actions to see what direction you take. There's not much information available about the ADOS procedure online, but there have been a couple of threads that mention it here. I don't know what other sorts of tests they might use to directly observe your autistic tendencies, since the ADOS was the only test of that type that I took: all the rest were self-reports, IQ test, reports for my mom to fill out about my history, etc. None of them directly observed how I behaved the way the ADOS did.

I was 52 when I read a New York Times article and felt that tickle of recognition. It took another six years before I got to the formal diagnosis. Ten years since then have taken me through some redefinitions. There're walls of ignorance.

I hope it's not absolutely necessary that a parent accompany you to be diagnosed

I was raised solely by my mother who is now passed on.

Actually, I posted this on another thread and it might be useful to post it here as well, just in case anyone reading this has any ideas.

The_Gimp wrote:

This might be the best evaluation quiz on the internet, to find out.

----> Asperger's quiz

But you still need to go to a certified GP who specializes for Asperger's to find out for sure.

Thank you for this quiz, it was really useful. (I got my boyfriend to do it as well to compare results.)

There were a few questions that perplexed me though. Could you, or anyone else, describe why these questions were on the quiz?

Are you more sexually attracted to strangers than to people you know well?
Have you have had long-lasting urges to take revenge?
Do you have a need to confess?
Do you have an urge to observe the habits of humans and/or animals?
Do you have an urge to learn the routines of people you know?
Do you expect other people to know your thoughts, experiences and opinions without you having to tell them?

And, most confusingly...

Have you seen a male flasher?