Diagnostic testing to identify struggles

[vergil96]

What does a diagnosis look like for adults? Which tests are done apart from talking with the psychologist? From what I've gathered, cognitive speed, IQ, MMPI-2, ADOS, AQ, reading emotions from eyes, testing for dyslexia (someone was still in school). Are there any other tests done? If someone has a high IQ and their cognitive parameters are very good, they are good at reading people and get a low score in AQ, but still claerly have autism, what does such an assessment look like and what can be the benefits?

Tbh I would want to get to know something about the way I function during an assessment and I would want to make my life easier, because I'm exhausted. I would want to learn about what my problematic areas are and improve them. But reading about the tests, I doubt that they can give me any constructive feedback. I have also done half or most of them before and nothing comes up. The only surprise was the result of the IQ test.

So okay, why I have autism and it doesn't come up in testing. I'll go through the diagnostic criteria:

Spoiler

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity.

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.
2. apparently inflexible adherence to specific, nonfunctional routines or rituals.
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements).
4. persistent preoccupation with parts of objects.

A.
1. I don't make as much eye contact as most people do and 90% of the time look at other parts of the face, not the eyes, because eye contact is too intense for me and it's extremely uncomfortable. I get told that I don't look at the person I'm talking to, especially when I'm trying to concentrate on what they're saying. I also get told that I have a too neutral facial expression, I do make facial expressions, but I come across as calm and even aloof to some people
2. no
3. I don't think so, although I'm confused what exactly I should share with others and how, I often am misunderstood when I try to share something important for me, so I hesitate to share
4. I don't think so, although from what I've read this criterion is about either not talking or info dumping, which I do, both, although I try to be responsive to what others want and need to hear

B.
1. special interests - yes, tbh I'm bored talking about most other subjects, I know that's a bit weird... I don't like small talk.
2. I know it can seem like that to an outsider that I do things in a specific way and freak out when it's disturbed. The reason is that I'm distractable (possibly I have both autism and ADHD) and I have issues with e.g. food - limited diet, losing things - they have to lay in the same place all the time or I'll lose them, I can't find things in clutter in a lifetime or I completely lose my train of thought when taking a shower, there are many things like that, typical "head in the clouds"
3. stimming - yes, a lot, although it might not be very obvious to someone like a psychologist, because I learnt socially acceptable stims, such as playing with something in my hands
4. sensory issues - yes, a lot. Food, lots of problems, I hate certain sounds so much that they make me furious in a matter of seconds, such as sirens or motorbikes, I hate several other things such as being touched at all even by a girlfriend, it's like, I want to, but damn, I hate being brushed by others in a crowd or the air quality and humidity in many places indoors, I also can't sleep if it's not perfectly dark and quiet and I notice sounds and smells that others don't notice and they drive me bonkers. It's generally a big issue, because I can have a meltdown due to sensory issues seemingly out of nowhere, it's very quick and I feel extremely agitated or furious. Or a shutdown or how idk how it's called that I can't talk because of the crowd and something stinking. The saddest part about it is that other people don't believe me, because they've never had such an experience.

Generally what's very sad about it is being completely misunderstood. People misinterpret sensory issues a lot, as having to do with them or think they're possible to overcome, because it seems like they don't have the same sensory experience of the world as a whole, I often feel like an alien because of that. They also misread the poor eye contact thing.

Additional points: I experience meltdowns and shutdowns due to both rapid overstimulation and gradual that spans over the whole day or long term.

Or is it like, are the tests supposed to detect only people who aren't ASD-1? I think that this division creates a false impression that if someone doesn't have learning difficulties of severe disabilities, they don't struggle and suffer a lot and that some of the things caused by autism and/or living in a society that isn't aware of it aren't deliberating. However, I think it's a good description that others, including professionals not long ago, don't notice my autism and mistake overstimulation for lots of other things. There are descriptions that for ASD-1: "Those on this level will require some support" and ASD-2: "In this level, individuals require substantial support and have problems that are more readily obvious to others." so ASD-1 is when your struggles aren't obvious or are even invisible.

I asked about tests, but if you have input how to make life less exhausting, you're welcome.

 

[Soniadvn]

Hi, I particularly didn’t get IQ test and was like borderline in my AQ test. but I do have a number of sensory sensitivities like to light and tactile and a lot of stims that I have learned to camouflage. Because I am a woman, they also gave me the social camouflaging test which i scored really high on. Not quite sure if you could ask for it. Another thing was that they included pragmatic language assessment with a speech pathologist who specialised in autism. That was because I had a masters degree so they saw me as high functioning. She concluded I was a literal thinker and have good interpretations of social situations. But she had no doubt that I was autistic and taught me a little bit of the NT way of communicating. I was categorised as ASD-1. So a lot if these tests shouldn’t be a rigid determinant but my psychologist had 30 years of experience and said that there’s a lot of people like me who managed through the education system pretty well but still well be autistic. having had a good diagnosis experience definitely helped me manage through life, and having a privilege to be off work with my parents support is great too

top tips for me:
- focus on your quality of sleep: buyyy earbudssss it’s pretty life changing for me. Asked to be prescribed melatonin if you have trouble sleeping. Use eyemask for total darkness as well, buy comfortable pjs
- carry around noise reduction earbuds (I use the brand loop)
- I’ve always learnt to just breathe through my mouth when people wear excessive perfumes…. Its easier than having to explain
- I have ADHD too! youtube leafs on a stream exercise, sometimes it’s helpful for me.

goodluck!

 

[Progster]

What does a diagnosis look like for adults?

Mine was just a long interview, where my mum was also present and he asked he some questions too, and got input from her. Some of the questions were related to autism, some others were to rule out other possible diagnoses. I feel that he was observing as much as testing, my body language and non-verbal communication as much as what I actually said. I wasn't given any tests.
It's more normal to have tests similar to the ones you mention as well as interviews, though.

 

[Neonatal RRT]

Vergil, I thought my testing was fairly comprehensive compared to some here on the forums, however, at the time of my diagnosis, I really didn't know enough to even know what to ask. I do believe I helped myself and my psychologist by taking the time to write out a 172-point, itemized list of all my perceived experiences, signs, and symptoms. My testing included a few hours in a cognitive performance lab with two professionals, who then reported the results to my psychologist. My wife was interviewed. I took a few hours of written tests. Then, an interview, with more testing from my psychologist. A month later, I returned for a follow-up and diagnosis, with a 12-page report handed to me.

I did post some of my testing in my signature (below) and my avatar (left), but basically, I had the hallmark "asymmetrical intelligences" of autism. However, I do agree that one's lowest intelligence score, severity of sensory issues, and social reciprocity, will often contribute to how well one can adapt, or not, to the world around them. I was married, a father, educated, held a long-term job, etc. That said, that alone would suggest that I didn't need "assistance" and would put me into the ASD-1 category. My most noticeable sensory issues have to do with my vision (Visual Snow Syndrome) and hearing (persistent tinnitus), but since I was born with it, I have adapted and can cope with it. The lowest of my intelligence scores was at the 68th percentile, so still above average. My social reciprocity was very low, and stood out quite a bit. However, there were other things that I was tested on, that I literally couldn't do at all, or really struggled with, that weren't mentioned in the narrative or the testing. So, like you suggested, there's questions to be answered.

 

[vergil96]

I didn't get a result of IQ, it was above the range of the test, which was 130. I did all the questions correctly. My therapist says I read unusually fast. I have a whole skill set like that. I won competitions in math, I'm good at machine learning, know a few foreign languages. There is no way anything would come back as impaired. It's a bit weird to have skills like that by itself, tbh, I'm not surprised that there is some neurodivergence going on.

From random tests I took online, my verbal intelligence was very good. I detect things in images quickly but maybe my perception is a bit unusual in all kinds of ways, I detect really unusual things such as the numbers in test for daltonism, the difference in shade stands out to me. Mental rotations were very good. I performed worse on finding things in clutter and the emotions from eyes but still good. It's not that I can't tell emotions, but I don't look at eyes that much, I look for them in body posture, tone of voice, the whole facial expression... I don't know why someone would think emotions show just in the eyes.

I'm going to find the AQ and post it. Okay:
Your score was 24 out of a possible 50.
Scores in the 0-25 range indicate few or no Autistic traits.
Like, I don't know if the test asks the questions in a wrong way, too indirectly or maybe I'm unaware of how I compare to others, maybe something is being lost in translation. I didn't feel one way or another about many items. I had uneven results at school, but I'm not sure if it would come up in any tests, at the end exams, I got 100%.

Who the test is designed for​

• Adults (age 16+) with IQ in the normal range (IQ >=80)

Maybe that's the problem? I'm closer to 160 than 80... It's the only anomaly I see in all that.

Is it hard for you to see why some things upset people so much?
-> maybe it's a too nebulous question?

Do you instinctively become frightened by the sound of a motor-bike?
-> how do I answer if I become furious and would happily punch the rider straight in his face?

"Final version 4

Thank you for filling out this questionnaire.

Your broader autism cluster (Aspie) score: 90 of 200
Your neurotypical (non-autistic) score: 136 of 200
You are very likely neurotypical"

The masking test is also inconclusive.

But you know, having a meltdown due to sirens or in a cinema, becoming emotionally unstable and exhausted due to changes in routine, that's autistic... I could describe more examples. It affects my life a lot. In a negative manner. I have no clue whatsoever why it showed neurotypical perception, I have severe sensory issues in all kinds of ways. I also clearly encounter 80% aspies who share my interests.

*sigh* I don't know what I always need to stand out in issues that affect my life a lot and when it's important that they're acknowledged by others or in which I require help from others. It's super frustrating.

Maybe I misinterpret the questions, because they're too vague, but I'm sick and tired and I really don't want to play the "what the author had in mind" game again. These tests ask specific questions and try to make them into metaphors when they're not. Probably. It was supposed to be an aspie quiz, can I file a complaint, lol? They could at least try to be accurate if the population they target is literal thinkers.

The MMPI-2 alone takes more than an hour if I recall right.

 

[vergil96]

Hi, I particularly didn’t get IQ test and was like borderline in my AQ test. but I do have a number of sensory sensitivities like to light and tactile and a lot of stims that I have learned to camouflage. Because I am a woman, they also gave me the social camouflaging test which i scored really high on. Not quite sure if you could ask for it. Another thing was that they included pragmatic language assessment with a speech pathologist who specialised in autism. That was because I had a masters degree so they saw me as high functioning. She concluded I was a literal thinker and have good interpretations of social situations. But she had no doubt that I was autistic and taught me a little bit of the NT way of communicating. I was categorised as ASD-1. So a lot if these tests shouldn’t be a rigid determinant but my psychologist had 30 years of experience and said that there’s a lot of people like me who managed through the education system pretty well but still well be autistic. having had a good diagnosis experience definitely helped me manage through life, and having a privilege to be off work with my parents support is great too

top tips for me:
- focus on your quality of sleep: buyyy earbudssss it’s pretty life changing for me. Asked to be prescribed melatonin if you have trouble sleeping. Use eyemask for total darkness as well, buy comfortable pjs
- carry around noise reduction earbuds (I use the brand loop)
- I’ve always learnt to just breathe through my mouth when people wear excessive perfumes…. Its easier than having to explain
- I have ADHD too! youtube leafs on a stream exercise, sometimes it’s helpful for me.

goodluck!

Thank you ^^

I'm happy that you've found speech therapy helpful. It certainly helps to find someone experienced.

I do have earplugs and noise-cancelling earphones, they're great. I don't breathe when someone has a too strong smell for whatever reason too. I exercise a lot, it helps me be patient when working.

 

[Outdated]

But reading about the tests, I doubt that they can give me any constructive feedback.

There seems to be a vast difference in the way autism is treated in different countries, by comparison the rest of the world the americas and the UK seem to be third world countries regarding mental health. I'm not sure about Europe.

My diagnosis was by a panel of 3 psychiatrists and psychologists and it took more than 3 hours to get through. All we mostly did was talk, and they showed me a few little video clips and asked me questions about them.

It didn't make a lot of sense to me when I was sitting there but the report they wrote up afterwards was very clear and concise and showed the simple logic of the testing they did. It was also very helpful to me in many ways.

I'm sending you a link to pictures of my report in a PM. It contains a lot of very personal information so I hope you value the trust I'm showing here and respect my privacy. I hope reading through my report will help settle some of your worries.

 

[vergil96]

After reading the report, there is more in the social category than I thought.

I could add my issues with hearing to reciprocity and probably also just not being talkative. I talk more about things that interest me, but I have my daily limit for talking and generally interactions with others. I also don't enjoy my time in large groups, I get talked over and can't hear in noise.

I think I'm good with gestures, but I don't demonstrate how I feel or my intentions with complex behaviours and often fail to see when others do, which means I step on some toes. Not displaying such behaviours also gets me read as oblivious and sometimes uncaring. I'm bad at making impressions.

A psychologist might also think its unusual that I spend a lot of time at home and don't want to meet my friends all that often. Every week is too much for me unless I'm very used to someone. I like to text people, but not to go out and meet very often. It's too exhausting. It's because I get overstimulated from too much interaction, there is a lot of everything and I need to process all the sensations. Otherwise my system gets clogged in one way or another.

Random: I also get called a grammar nazi and I want to construct LFS this summer (linux from scratch, writing an OS by hand)

I thought the social issues meant something else, not another dimension of sensory issues and/or overstimulation combined with special interests that make it difficult to participate in social life.

 

[vergil96]

Is there a different profile of issues in ASD-1 and ASD-2? Apart from being able to complete higher education and being "obvious"?

 

[Rodafina]

Is there a different profile of issues in ASD-1 and ASD-2? Apart from being able to complete higher education and being "obvious"?

Post in thread 'Could I have ASD2?'
Could I have ASD2?

post #8

 

[Outdated]

I thought the social issues meant something else, not another dimension of sensory issues and/or overstimulation combined with special interests that make it difficult to participate in social life.

I'm glad you found that report helpful, we seem to be very similar in many ways. There's one factor that plays a huge role in our different abilities to socialise - I'm Australian.

Beer is a cultural artifact here, a symbol of hospitality. If someone here offers you a beer it is extremely inappropriate to refuse, even if you don't drink. To say "No thank you, I'd prefer wine." is incredibly insulting. When someone offers you a beer they are not offering because it contains alcohol, they're offering because it's Beer.

Beer is especially commonly used to settle arguments, especially work place disputes. "There's obviously a few issues between us, what do you reckon about going to the pub at lunch and doing a couple of beers about it?"

So as a young man I was a big drinker and very social, have a few beers and all your social anxieties disappear. I was fortunate that I was immune to hangovers and I never formed an addiction to alcohol but up until my 50s I was very social.

 

[vergil96]

Post in thread 'Could I have ASD2?'
Could I have ASD2?

post #8

Geez, I could actually be level 2, because my sensory issues are quite bad. They give me frequent meltdowns. Reduced resonse to others... I often just don't even hear someone is talking to me and they get angry that I ignore them, but I don't. Maybe I miss some other social cues as well when there is too much visual clutter.

There's one factor that plays a huge role in our different abilities to socialise - I'm Australian.

Wouldn't you report better social skills then? I didn't think I fulfil the social skills criteria that much.

 

[Outdated]

Wouldn't you report better social skills then? I didn't think I fulfil the social skills criteria that much.

When I was younger I don't think I would have been diagnosed as ASD2, I really was very social. And I do have very good social skills when I have the motivation to use them, but now I'm getting older I'm a lot less inclined.

 

[vergil96]

When I was younger I don't think I would have been diagnosed as ASD2, I really was very social. And I do have very good social skills when I have the motivation to use them, but now I'm getting older I'm a lot less inclined.

I have heard from a friend who is diagnosed with Asperger's (that was a few years ago already, so there wasn't a three level classification) that sensory issues resembling hearing impaiment are "higher level" of autism. And I was confused about it, because I have that and I have a university degree and a social life. Now that I see that you were diagnosed with level 2 and have such sensory issues and others in the thread about ASD-2 as well as such a description in the table linked by @Rodafina , and routines and repetitive behaviours that cause distress when interrupted (pervasive sensory issues) it got me thinking that maybe it's a trait of level 2. The description of social issues as "noticable" or "apparent" and "marked" is rather vague. Hard to imagine what it could mean in practice. "Reduced or abnormal response" vs "may appear to have descresed interest in interactions" only stands out to me as a clear description. It's hard to know someone is talking to you if it disappears in autitory and visual clutter, hence I'm linking it to sensory issues. Also hard to respond if you have a hard time naming things you perceive - idk that's my problem at least. I don't want if you want to hear the mechanics how it works, I found out some time ago how not being able to find a word for something works. Low-grade overstimulation, to simplify.

 

[Rodafina]

@vergil96

I am similar in a lot of ways. Based on that chart that Ella Spell provided, I definitely fall into the ASD 2 category. I seem to relate better to the experiences of those who are diagnosed as ASD2 on the forum, as well. I have multiple degrees and have worked professionally for a long time, but the amount of energy it took from me nearly ended my life.

Drug addiction helped me in a way, but only because I didn’t understand what was going on. I would not describe myself as high functioning, but from the outside, to some, may appear that way.

 

[AspieChris]

Getting an accurate diagnosis in adults is really difficult because we’re so good at masking that we tend to answer questions on the test in the same way we answer the same questions in everyday life, by saying what we want others to hear without realizing that we are doing it.

Example: Do I talk to myself out loud when I think nobody can hear me? Of course not!. But my wife recently told me that she hears me doing it all of the time.

 

[Outdated]

I have the same trouble you do with separating sounds. When people are talking in a crowded pub, for example, they are able to filter out the unwanted sounds and only hear the voices of the people they are talking to. I can't do that, I hear all sounds at once and at the same volume, an unintelligible cacophony.

I've been like this since birth and it was always a struggle trying to socialise, it never came easy. In a crowded situation I rely on a combination of lip reading and body language in order to properly understand people. Learning to listen like this became natural to me and I hate talking on the phone because voice alone does not convey all the information I rely on in order to work out what people are saying.

It's a strange situation, it seems to take a while for my brain to interpret voices in to meanings, yet watching people in a real life situation I can understand them instantly and extremely well. I'm extremely sensitive to body language and gestures. I also get along with animals very well because I understand their language.

I also switch off audio if I'm intensely focused on something, if I'm reading a really good book I hear no sounds. Or at least my conscious mind doesn't hear them. (your work situation)

Many years ago after work I was sitting in my lounge room reading a book, when all of a sudden the book got ripped out of my hands. I looked up at a very angry girlfriend who said "You haven't heard a bloody word I said!". I told her "No, I didn't even know you were home yet.". She hurled the book across the room and said "You were f-word answering me!".

So although I was pretty successful at socialising it was never without problems.

I also can't answer the phone if I'm in a public place, simply because if there's too much other noise going on around me then I can't hear anything.

 

[AspieChris]

I have the same trouble you do with separating sounds. When people are talking in a crowded pub, for example, they are able to filter out the unwanted sounds and only hear the voices of the people they are talking to. I can't do that, I hear all sounds at once and at the same volume, an unintelligible cacophony.

I've been like this since birth and it was always a struggle trying to socialise, it never came easy. In a crowded situation I rely on a combination of lip reading and body language in order to properly understand people. Learning to listen like this became natural to me and I hate talking on the phone because voice alone does not convey all the information I rely on in order to work out what people are saying.

It's a strange situation, it seems to take a while for my brain to interpret voices in to meanings, yet watching people in a real life situation I can understand them instantly and extremely well. I'm extremely sensitive to body language and gestures. I also get along with animals very well because I understand their language.

I also switch off audio if I'm intensely focused on something, if I'm reading a really good book I hear no sounds. Or at least my conscious mind doesn't hear them. (your work situation)

Many years ago after work I was sitting in my lounge room reading a book, when all of a sudden the book got ripped out of my hands. I looked up at a very angry girlfriend who said "You haven't heard a bloody word I said!". I told her "No, I didn't even know you were home yet.". She hurled the book across the room and said "You were f-word answering me!".

So although I was pretty successful at socialising it was never without problems.

I also can't answer the phone if I'm in a public place, simply because if there's too much other noise going on around me then I can't hear anything.

Wow! I thought for my whole life that I was the only one with that problem. You just described me perfectly. Every last word.

 

[Progster]

I have similar issues with noise and background noise. I can't seperate sounds and struggle to understand someone speaking when there's background noise. Especially in the supermarket or in offices when you have to hear someone from behind a glass partition, it's just about impossible.

My only hope is to try to make their voice louder, so I've developed a habit of turning my ear towards them to try to understand what they're saying. People sometimes think I'm deaf. Another related problem is that I simply don't process it all, and bits are missing, which, again, leads people to believe I'm hard of hearing.

At one of my jobs, the boss called me into her office one day. The reason? She suspected I had hearing loss because I often apparently don't hear when people are speaking to me. I'm not even aware that they spoke to me, I just don't process it. Too much going on. And yet, when I'm in nature, in a forest, I can hear all the birds, the leaves rustling, etc.

 

[Outdated]

Wow! I thought for my whole life that I was the only one with that problem. You just described me perfectly. Every last word.

That girlfriend at the time told me afterwards that she'd been talking to me for half an hour and it took her that long to realise that some of my answers weren't making a lot of sense.