At the Crossroads of Diagnoses

[Vesta]

I want to share my concerns about a possible diagnosis. I haven’t yet decided whether I should see a specialist to confirm my suspicion that I might be on the autism spectrum. I’m worried that, due to the lack of awareness about diagnosing autism in adults, especially in women, in my country, I might be misdiagnosed with something else.

What troubles me is that if my suspicion isn’t confirmed—since I’ve already come to terms with the idea of being autistic and even found a certain sense of harmony in it—I may feel lost again

Although social phobia, schizoid, and schizotypal personality disorders share similar traits, it saddens me to think that it was the cruelty of other people that shaped me into this state. Ever since childhood, I have faced rejection and alienation

 

[Grondhammar]

That's a good way to put it -- a sense of harmony in it.

That's very difficult choice. If you were in a country where the spectrum is accepted and well understood, I'd say absolutely, do the testing/analysis. But without that scientific acceptance, it's very hard to say.

If you can somehow get a fair and accurate diagnosis, I can say from experience that it takes away the questions and doubt, and gives you a path to follow and a lot to read and soak in completely.

I understand at least at a basic level about the hurt and sadness. I've posted a couple of times about my own experience, but in short I've faced pretty constant rejection and attacks due to my characteristics. Finding this forum, and finding a local autists group and one friend there who has shared the same challenges, was like taking a pack of heavy rocks off my back. The hurt is still there, but I have a little hope that there's light out there somewhere.

 

[Outdated]

That's very difficult choice. If you were in a country where the spectrum is accepted and well understood, I'd say absolutely, do the testing/analysis. But without that scientific acceptance, it's very hard to say.

In some countries costs are a very prohibitive factor too, and for many people not worth it unless the diagnosis will give them some kind of benefit.

 

[TBRS1]

I am very pragmatic in making decisions. My thought process would be like this:

Is there a definite benefit to the diagnosis (such as government services, or magic pills that really work)?
If no, the actual diagnosis is useless.

What IS useful is this:

Do I have fewer problems if I act on the assumption that I'm autistic (such as finding an accepting community, sharing experiences and learning useful management techniques, etc.)?
If yes, do it. Confirmation from the doctor is superfluous if a wrong diagnosis leads to the correct cure.

Short form: don't worry about it. If thinking you're autistic is working for you, keep doing it.

 

[Shamar]

I want to share my concerns about a possible diagnosis. I haven’t yet decided whether I should see a specialist to confirm my suspicion that I might be on the autism spectrum. I’m worried that, due to the lack of awareness about diagnosing autism in adults, especially in women, in my country, I might be misdiagnosed with something else.

What troubles me is that if my suspicion isn’t confirmed—since I’ve already come to terms with the idea of being autistic and even found a certain sense of harmony in it—I may feel lost again

Although social phobia, schizoid, and schizotypal personality disorders share similar traits, it saddens me to think that it was the cruelty of other people that shaped me into this state. Ever since childhood, I have faced rejection and alienation

After you have read enough posts here, you may get the impression that doctors are wrong more often then right. Unless the doctor gives specific, valid reasons for rejecting one diagnosis over another, you can simply say The Doctor Is Wrong, not not follow the treatment. You DO have that right.

 

[Outdated]

I am very pragmatic in making decisions. My thought process would be like this:
Is there a definite benefit to the diagnosis....

That's very much me as well. I had already figured out that I was autistic by the time I applied for a diagnosis, and that's very cheap in my state, but I don't think I would have bothered if I wasn't trying to get on the pension.

I was hoping a diagnosis in combination with a whole heap of other factors would get me the pension, in the end I got listed as ASD2 in my diagnosis and that alone was enough.

There were a few huge factors in my favour though. What you have to go through varies from country to country and even between different states within the same country.

In South Australia there's a huge autism diagnostic centre that also provides psychological and educational services and services through them are subsidised by the state government. That's not an Australia wide policy, as far as I know only South Australia and Western Australia do this.

So to get a diagnosis I didn't have to do all the time wasting and expensive crap seeing GPs and head shrinks, I walked straight in to a government recognised facility, literally walked through the front door, and said "Hi, I'm autistic and would like a formal diagnosis please.".

A couple of really nice ladies chatted to me for about 15 minutes, they both agreed that I was probably autistic and put my name on the waiting list. There was a 12 month wait. When my appointment finally came around it was a face to face interview in front of a panel of 3 different behavioural specialists, that lasted for about 3 hours. Then afterwards I waited around while they wrote up a 12 page report on not just their findings but also their reasons for their opinions. Reading that to myself was a bit of an eye opener to say the least.

Total cost to me was Au$500. That's about US$325. And because I went through a government recognised facility getting the pension was a lot easier, I didn't have to muck around getting second and third opinions.

As well as a pension it did give me a very satisfying sense of validation and vindication, but those feelings don't last for long.

 

[Grondhammar]

@Outdated, just have to say, that is incredible. Almost makes me consider moving there for that kind of support. But I have two co-workers who lived in Melbourne who warned me about the bugs

 

[Outdated]

But I have two co-workers who lived in Melbourne who warned me about the bugs

I spent 20 years living in the tropics, more than a decade of that living a semi feral lifestyle in a remote community. By comparison there are no bugs down south.

South Australia is sort of leader of the pack when it comes to dealing with autism. We now have a government department set up to deal with all things autistic and an official Minister to oversee it.

Office for Autism

 

[Vesta]

Если нет, то сам диагноз бесполезен.

I am very pragmatic in making decisions. My thought process would be like this:

Is there a definite benefit to the diagnosis (such as government services, or magic pills that really work)?
If no, the actual diagnosis is useless.

What IS useful is this:

Do I have fewer problems if I act on the assumption that I'm autistic (such as finding an accepting community, sharing experiences and learning useful management techniques, etc.)?
If yes, do it. Confirmation from the doctor is superfluous if a wrong diagnosis leads to the correct cure.

Short form: don't worry about it. If thinking you're autistic is working for you, keep doing it.

I want to better understand how my nervous system works. I’m trying to figure out why social interaction is so difficult for me. I’m not sure if I have autism—it’s probably not very pronounced.

Self-diagnosis is often criticized, and I feel like people might think I’m just using it as an excuse for being unsociable or unsuccessful, or that I just want to stand out. Because of this, I start feeling insecure

 

[UFO]

I was hoping a diagnosis in combination with a whole heap of other factors would get me the pension, in the end I got listed as ASD2 in my diagnosis and that alone was enough.

What contributed, in your case, you to be diagnosed as ASD2 instead ASD1? I have got an impression from your randomly selected forum writings that you are quite well functional and independent with little to none support needs.

 

[Outdated]

What contributed, in your case, you to be diagnosed as ASD2 instead ASD1? I have got an impression from your randomly selected forum writings that you are quite well functional and independent with little to none support needs.

To me it was a test I had to pass in order to get a pension, and as a kid I always loved tests. Also, you don't want to pay for a diagnosis and then walk away empty handed so I layed it on a bit thick and exaggerated a lot of my responses.

But then when I read back through the report they wrote a lot of the things they picked up on were things that I never knew about myself. One of the things was the way in which my face maintained a pleasant smile even when discussing topics where a smile is inappropriate. Apparently they found that quite disturbing.

Another flaw I wasn't aware of showed up when they got me to watch a short video clip of a woman talking and then they asked me a few questions about her emotional state. I did fine with that but then they showed me another clip of the first woman talking to two other women. They asked me a question about one of the other women and I was instantly embarrassed and had to admit "I'm sorry, I was still watching the first lady and didn't take any notice of the others.".

Since then I've discovered I have a much more narrow field of focus than most people, with my eyesight as well as mentally.

Ultimately there was six different criteria they were looking for and meeting any three of those would have marked me as autistic, I met all 6 criteria. So I not only got assessed as ASD2, they also listed me as a person in need of substantial assistance and asked me if I wanted to have carers come in and check on me and help me where I needed it.

The thought of strangers randomly coming around my place and acting like my Mum scared the hell out of me though so I told them I really didn't want that.

 

[Judge]

I had already figured out that I was autistic by the time I applied for a diagnosis, and that's very cheap in my state, but I don't think I would have bothered if I wasn't trying to get on the pension.

There are three considerations in this single sentence that to me are the most relevant in determining whether or not to pursue a formal diagnosis:

* The ultimate cost to you in pursuing such a diagnosis.
* To carefully weigh your intent for doing so.
* That you essentially have already concluded a likelihood of being on the spectrum of autism.

In a country with an indisputable understanding of socialized medicine, it's likely that most persons can afford the process financially. Conversely, in a nation like the US it may prove quite costly depending on whether or not one has health insurance that may cover it in whole or in part.

Regardless of whatever legal jurisdiction you reside in, it's best to consider your real intent in securing a positive diagnosis. To not only validate what you've suspected, but to what purpose that formal diagnosis will serve you, with particular focus on government entitlements and accommodations in the workplace (if available). And perhaps above all, to recognize and either accept or reject the possibility of such a diagnosis as a formal matter of record that once on the book, cannot be expunged. And most of all to consider whether this could follow you around not only medically, but professionally as well. Whether or not this can impair your ability to be hired or retain employment depending on any number of legal considerations and societal stigmatization of neurodiversity.

That if one is truly eligible for entitlements requiring such a formal diagnosis, being willing to take certain potential risks and leaps of faith are quite understandable.

One thing I can't help but comment on is seeing how many people come to this community with suspicions of their own autism who go onto to validate it through a formal medical diagnosis. That very few people come here who ultimately determine that they are not autistic.

To consider what is to be gained against what might be lost in pursuing such a diagnosis in making your autism a matter of public record, especially if it isn't really required beyond mere peace of mind.

 

[Neonatal RRT]

I want to share my concerns about a possible diagnosis. I haven’t yet decided whether I should see a specialist to confirm my suspicion that I might be on the autism spectrum. I’m worried that, due to the lack of awareness about diagnosing autism in adults, especially in women, in my country, I might be misdiagnosed with something else.

What troubles me is that if my suspicion isn’t confirmed—since I’ve already come to terms with the idea of being autistic and even found a certain sense of harmony in it—I may feel lost again

Although social phobia, schizoid, and schizotypal personality disorders share similar traits, it saddens me to think that it was the cruelty of other people that shaped me into this state. Ever since childhood, I have faced rejection and alienation

If there is a way for you to create a Word file (or the like) that you can print for the doctor(s). You might think of it as your personal "You might be autistic if..." file.

Personally, I had taken nearly 3 months to create it...adding a few thoughts, experiences, etc. It was all itemized. I had about 170 different things. Several pages.

Neurotypicals might not understand this...but for the autistic sitting in an office...the questions from the doctor...from a cognitive bias perspective, may be "leading" and being worded to achieve the confirmatory answers the doctors want. For a lot of us, this strange environment, the anxiety, the mental stress of the day and appointment, the social and communication difficulties, the "mind blindness" of not being able to accurately intuit the intent...it is all a melting pot of variables that put us at some disadvantage trying to communicate our need for answers and help.

I have used this technique about 3 times now...and so far, all the physicians were not only surprised, but happy for all the information. At some level, I think that some physicians have good intent...they want to help...but I think they struggle with information gathering and cognitive bias.

 

[vergil96]

What contributed, in your case, you to be diagnosed as ASD2 instead ASD1? I have got an impression from your randomly selected forum writings that you are quite well functional and independent with little to none support needs.

It seems to me that in adults, significant sensory issues contribute to ASD-2 diagnosis.

Ultimately there was six different criteria they were looking for and meeting any three of those would have marked me as autistic, I met all 6 criteria. So I not only got assessed as ASD2, they also listed me as a person in need of substantial assistance and asked me if I wanted to have carers come in and check on me and help me where I needed it.

Maybe it's living in the bush for years that made that impression? Outside the society.

 

[Outdated]

Maybe it's living in the bush for years that made that impression? Outside the society.

Maybe, but I was always outside of society even as a small child. I was never able to copy other kids to try and fit in so I just got used to standing out. I think this is why I have such little social anxiety, I'm used to not giving a toss about what other people think of me.

 

[maleonolo]

Maybe, but I was always outside of society even as a small child. I was never able to copy other kids to try and fit in so I just got used to standing out. I think this is why I have such little social anxiety, I'm used to not giving a toss about what other people think of me.

What do you mean by having high social skills?

 

[Outdated]

What do you mean by having high social skills?

A natural talent both my brother and I have. We're both good talkers and have a natural charisma and people in general just like us for no reason at all. Either of us walks in to a room and people look up and smile at us, we seem instantly likeable before we even open our mouths. Both of us are highly intelligent, fairly well educated, and we have the same eidetic memories so we can talk on a wide range of topics to a wide range of people across the whole spectrum of society.

Both of us are also exceptionally good at reading body language and are very good at talking people around to our way of thinking. We can be pretty good con men when we decide we want something. This was how I managed to change jobs on a whim whenever I felt like it. On paper no one would employ me, but if I walked in the door "kissing hands and shaking babies" it was pretty much guaranteed that I was going to get the job.

When I decided I was too old to keep living in the bush I just decided to jump on a plane down to Adelaide and sort out my retirement. I had no idea what sort of schemes were available but I grew up here so I knew there at least would be schemes. I wanted a housing trust home so I get cheap rent and I wanted a pension so I never had to work again. I had no idea how to go about any of this until I started doing it, but for my whole life all I've ever had to do is talk to people and I get what I want. It's an ability I've learned to have faith in over many years.

Lucky for society I have simple dreams I guess.

[Edit] my great grandmother called it "The gift of the gab and the gift of the glam".

 

[maleonolo]

A natural talent both my brother and I have. We're both good talkers and have a natural charisma and people in general just like us for no reason at all. Either of us walks in to a room and people look up and smile at us, we seem instantly likeable before we even open our mouths. Both of us are highly intelligent, fairly well educated, and we have the same eidetic memories so we can talk on a wide range of topics to a wide range of people across the whole spectrum of society.

Both of us are also exceptionally good at reading body language and are very good at talking people around to our way of thinking. We can be pretty good con men when we decide we want something. This was how I managed to change jobs on a whim whenever I felt like it. On paper no one would employ me, but if I walked in the door "kissing hands and shaking babies" it was pretty much guaranteed that I was going to get the job.

When I decided I was too old to keep living in the bush I just decided to jump on a plane down to Adelaide and sort out my retirement. I had no idea what sort of schemes were available but I grew up here so I knew there at least would be schemes. I wanted a housing trust home so I get cheap rent and I wanted a pension so I never had to work again. I had no idea how to go about any of this until I started doing it, but for my whole life all I've ever had to do is talk to people and I get what I want. It's an ability I've learned to have faith in over many years.

Lucky for society I have simple dreams I guess.

[Edit] my great grandmother called it "The gift of the gab and the gift of the glam".

I see, so you're popular despite standing out? Does your register change dramatically depending on who you're talking to?

Edit: I forgot to ask but do you know your IQ?

 

[Outdated]

I see, so you're popular despite standing out? Does your register change dramatically depending on who you're talking to?

Not sure of the term Register. The face I'm wearing changes depending on who I'm talking to and in what type of situation if that's what you mean. My demeanour, the way I present myself, the aspect of my personality that I present. Talking to a group of local business owners is different to talking to a group of factory workers and different again to talking to a group of street people. Being able to temporarily fit in with others makes communicating a lot easier, what's known as "communicating on the same level".

It took a lot of practice to be able to do that, and when you first start doing it it feels incredibly fake, but it soon becomes habitual and happens more naturally. I'm one of those people that just starts up conversations with random people when I'm out too and for me these days that's enough of a social life. I don't need constant companionship, I can just start talking to anyone whenever I feel like it.

 

[Outdated]

Edit: I forgot to ask but do you know your IQ?

It slows down as you get older, but when I was 14 I sat through a series of tests and scored 172.

I don't put a lot of store in those tests though, my sister wasn't quite as quick as my brother and I but she was still highly intelligent compared to most people, but if she'd sat those same tests I think she would have only scored in the 90s. She couldn't do maths on paper, only in her head. When she tried to write it down she got brain freeze.