I wasn't diagnosed with Autism

[Aecho]

I went to a psychologist recently hoping to get a diagnosis for autism. it was a therapy center for children and it was really the only place I could go to that was covered by my insurance. They said that they do evaluations for adults all of the time so I was ok with that. I am an adult female, and I've suspected that I had autism for a long time. I've done countless hours of research into this before I ever set foot in the psych's office. All of the research I did pointed to me being on the spectrum, along with my family suspecting the same (though they never took me to get a diagnosis. We grew up very poor and couldn't afford that sort of thing, and also my mother thought I didn't need it). I know from my research that it's a lot more difficult for females to get a diagnosis since we tend to hide our symptoms better than males, and that much of the criteria for autism is based on the male phenotype.

So I went in for an evaluation (specifically was administered the ADOS-2 for autism along with other evaluations) and got the results back. The psych said that I didn't qualify for autism because I could communicate well, with appropriate tone and cadence, failed to engage in echolalia, and didn't use formal words/phrases. I could participate in reciprocal conversation, and while my eye contact was "intermittent", my facial expressions were affective, and overall I displayed few overt characteristics of autism. However, she diagnosed me with dysthymia, general anxiety disorder, and sensory processing disorder. And according to my own personal research, all of these can be markers for autism in females and often get misdiagnosed as stand alone illnesses instead of autism.

But I'm wondering whether my view of myself and my perceived symptoms are real or just all in my head being misinterpreted. Lately (starting before the evaluation) I've been questioning whether I see myself accurately or not, and even during the eval I was wondering whether I was reporting everything correctly because often I tend to see myself and symptoms one way, then later on it changes to something else, or at least my perception of it does. So now I'm left wondering whether or not I actually have autism like I thought before, or I actually don't have it and it's just some weird mix between all of the above illnesses I have been diagnosed with that make it seem like autism.

WAS I misdiagnosed?
Should I get another evaluation somewhere else?
Am I alone in this experience?

 

[Streetwise]

Did you have any problems as a small child being antisocial taking your possessions and lining them up putting things into piles being very interested in one thing and doing it a lot not understanding body language problems with speech sensory overload meltdowns shutdowns

 

[pjcnet]

It makes me wonder how accurate some of these diagnosis methods truly are and how consistent they are when performed by different "professionals", it is worrying and I wish you could get a 2nd opinion at least, but I understand it's difficult when you live in a country without a National Health Service. Is there any charity organisations that could perhaps help?

PS: It would certainly kick up a major question if loads of people that didn't qualify for autism on these diagnosis tests started coming up positive in genetic tests and I wouldn't be a bit surprised if this really happened (but would they try to cover it up?).

 

[dragoncat16]

The fact that you didn't and don't have any language issues is what distinguishes what used to be called autism from what used to be called Asperger's syndrome. They are now all under the same category of autism spectrum disorder (ASD). The main question for diagnosis should be whether you have had and still have problems with social interaction. You don't mention whether you were even asked about this as part of the evaluation.

Many of us can act neurotypical (NT), in e.g. our speech and in the expressions we use, but we are still diagnosable. Most of the other issues the psych checked for in your case are more often associated with lower functioning individuals or children. I am led to wonder whether they evaluate adults in any different way from children at the therapy center you went to. For a correct diagnosis the criteria used for adults should be used. If they didn't ask you about social interaction, I don't think they did it properly, but that's just my opinion.

 

[OlLiE]

i show some of the things that you do that would be indicative of not being on the spectrum, but as i was still diagnosed as being on it - i think the reason is that these things do not come naturally too me - that i learned to fake them

my evaluation lasted 3 full days at a psychiatric hospital, while it included what you mentioned, it also included an extensive iq test and numerous tests on a computer to assess how i process information, and how i approach things

a second opinion of course can always be useful, however as i understand it there is no 'cure' for autism - you can only try to deal with how it manifests itself i your life - so if the symptoms are real to you - you can still try to recognise, understand and address them without a formal diagnosis

i'm not an expert in any way but i would assume that most meds that are prescribed for people on the spectrum may also be relevant for treating the symptoms even when they are not associated with being on the spectrum, anxiety meds, depression meds,...

 

[AspieWatchmaker]

Everything about measuring human behavior is subjective, and whether you relate with aspies well or score high on online tests or not is not as important as if there are issues with integration to society/interacting with peers. If the therapist doesn't think that the diagnosis will improve your quality of life then you won't be diagnosed.

It also depends on how you choose to present the issues you have to the therapist. If you cover up what you think are problems because you are embarrased then you can't be accurately assesed.

Get a second opinion if you feel you still ought to be diagnosed.

 

[Suzanne]

So difficult to deal with.

But as Streetwise says: what about your childhood? Because we do not "catch" aspergers.

 

[Fitzo]

I really relate to your experience as I had a similar response from the therapist I saw. The DSMV is very specific about the criteria you need to fulfill in order to get a formal diagnosis. He felt I was unlikely to meet that criteria based on our interview, but I am going back to see him a second time after completing some additional questionnaires. However I'm not really expecting that his initial opinion is likely to change as I can see how the criteria are heavily weighted towards the way males present. He did agree that they probably need to formulate different criteria for females, especially mature females who have had a lifetime to learn how to appear 'normal'. The DSMV though is what they currently are required to work with and therefore many women will be either misdiagnosed or undiagnosed. And it is quite political apparently.
Anyway, he agrees I'm definitely NOT neurotypical, but will probably turn out to be 'sub clinical'. He told me he's quite happy for me to identify as Aspie, but that doesn't make me feel comfortable either. It makes me wish I'd never sought a formal diagnosis. I was perfectly certain when I self diagnosed and all the questionnaires I took confirmed it.

 

[Ameriblush]

If those 3 things all have to be treated with different types of therapy, medication, and paperwork, I'd be the conspiracy theorist and say that it's an attempt to squeeze funds out of ya. If not, it could be what you said earlier, that they just misdiagnose us girls more often. It's a stereotype that it's mostly a guy's problem, or that many of the traits we have fall in line with most cultures' perception of women: quiet, temper-tantrum throwing, awkward socially.

 

[VioletHaze_03]

I was misdiagnosed from the time i was five years old. Every asessment i got back showed results of a less serious condition. Apparently i did not meet the "acedemic requirements" for a diahnosis of Asd. Basically i did not have a photographic memory, math skills, or a visual mind.this is the reasoning i got for not fitting the criteria. Only the earlier asessments touched on my behaviour, and even those didn't fully study it. It's very easy to get misdiagnosed, especially if you are a girl. We cover up what is actually going on and learn to mask things like poor eye contact and awkward conversation skills. For a lot of girls on the spectrum, it starts to become natural after a while. Don't get another asessment. They are very costly and draw from previous studies, so the more you have, the bigger your chance will be of getting misdiagnosed again. If you really need a correct diagnosis to get services or whatnot, i suggest taking your research to your doctor or psychologist. Explain why you think you may have ASD, and ask for a designation. This is not as concrete as an assessment, but it can be just as helpful.

 

[Bella Pines]

WAS I misdiagnosed?
Should I get another evaluation somewhere else?
Am I alone in this experience?

It depends what it is you are looking for. Do you need a diagnosis for work? Are you looking to understand yourself? Why? Are you looking to improve areas of your life?

I have aspergers, pure and simple. I have pretty much all the symptoms to varying degrees along with the more subtle features that I've been learning about here. I don't have any accompanying disorders like adhd, alexithymia, ptsd, bipolar, bpd etc. But I'm pretty sure I would fail a diagnosis. Because I found out later in life, I've learnt to suppress stimming and I can postpone my meltdowns until I am alone, and I can talk and communicate during shutdowns, and I have injected tone into an otherwise monotone voice. I also simulate facial expressions, it's all learned behaviour. But underneath it all I now know who I am and can tell the difference between what comes naturally to me and what I am mimicking. Either way, I would totally fail a diagnosis.

So depending on what it is you are looking for, you can either continue to analyse yourself or seek another diagnosis. I chose the route of self diagnosis because it was right for me. I studied all the conditions for hours and have asked many questions on this forum. After initial symptoms I found other little aspie things like the way I read maps, my tendency to be all or nothing, my abhorrence of small talk, my needing to be alone and so on. My tendency to monologue...

So it really boils down to what it is you need.

 

[Aecho]

Did you have any problems as a small child being antisocial taking your possessions and lining them up putting things into piles being very interested in one thing and doing it a lot not understanding body language problems with speech sensory overload meltdowns shutdowns

I honestly don't remember much of my childhood, at least not before the age of 9 or 10. I do know that I didn't have any friends, and had trouble making friends. Other than that I don't remember much. But I have always been hyper focused on whatever I was doing and would get really upset if that got interrupted (again from what I do remember).

 

[Aecho]

It makes me wonder how accurate some of these diagnosis methods truly are and how consistent they are when performed by different "professionals", it is worrying and I wish you could get a 2nd opinion at least, but I understand it's difficult when you live in a country without a National Health Service. Is there any charity organisations that could perhaps help?

PS: It would certainly kick up a major question if loads of people that didn't qualify for autism on these diagnosis tests started coming up positive in genetic tests and I wouldn't be a bit surprised if this really happened (but would they try to cover it up?).

See that's what I was thinking. A lot of the studies I read, particularly on the female side of autism are fairly recent, and I wonder whether or not many of the psychologists are up to date on the new research. I also know there isn't a standard test for adults who are suspected of being on the spectrum, so they have to resort to using the tests they have for children. That doesn't seem like it would be useful for someone who's grown up learning coping mechanisms and learned to hide their symptoms.
I've been trying to find someone else to get an eval from, but it's difficult to find someone who specializes in autism, let alone someone who deals with adults. And hopefully they come up with a genetics test soon, or at least something to support a psych eval for autism. To me psych evals are too subjective with too many variables to come up with an accurate diagnosis for anyone, not just for autism

 

[Aecho]

The fact that you didn't and don't have any language issues is what distinguishes what used to be called autism from what used to be called Asperger's syndrome. They are now all under the same category of autism spectrum disorder (ASD). The main question for diagnosis should be whether you have had and still have problems with social interaction. You don't mention whether you were even asked about this as part of the evaluation.

Many of us can act neurotypical (NT), in e.g. our speech and in the expressions we use, but we are still diagnosable. Most of the other issues the psych checked for in your case are more often associated with lower functioning individuals or children. I am led to wonder whether they evaluate adults in any different way from children at the therapy center you went to. For a correct diagnosis the criteria used for adults should be used. If they didn't ask you about social interaction, I don't think they did it properly, but that's just my opinion.

I've looked through the report I received regarding the eval on current social interaction, and most of it is just the results from the multiple tests I took that day (it was like a 7 hour evaluation). If I was asked about current social issues, it was either a specific question on a survey I completed or while I was talking to the psychologist, neither of which is mentioned in the report. I know I mentioned it to her, but whether or not that was included in my diagnosis is unknown to me. There were a total of about 15 different assessments taken, only one of which was for autism (the ADOS-2) and lasted probably for about 20 to 30 minutes give or take. I don't personally think that's an adequate amount of time to assess for autism, but this was my first time so I could be wrong.
From what I've read in my own research there isn't really a standard assessment for adults on the spectrum. So most psychs have to rely on the ones for children, and from the criteria in that assessment I took, it seemed to be made for kids. I remember feeling like I wasn't being asked the right questions, or at the very least wasn't able to give an accurate response for the questions posed. I've noticed in the report now that she incorrectly stated that I don't have "motor tics", which I've had for a long time. For instance, I've had a really bad habit of jumping and flapping my hands when I'm really exited, wring my hands when anxious, and jerk my head and scratch the back of my neck when angry or irritated.

 

[Streetwise]

I've looked through the report I received regarding the eval on current social interaction, and most of it is just the results from the multiple tests I took that day (it was like a 7 hour evaluation). If I was asked about current social issues, it was either a specific question on a survey I completed or while I was talking to the psychologist, neither of which is mentioned in the report. I know I mentioned it to her, but whether or not that was included in my diagnosis is unknown to me. There were a total of about 15 different assessments taken, only one of which was for autism (the ADOS-2) and lasted probably for about 20 to 30 minutes give or take. I don't personally think that's an adequate amount of time to assess for autism, but this was my first time so I could be wrong.
From what I've read in my own research there isn't really a standard assessment for adults on the spectrum. So most psychs have to rely on the ones for children, and from the criteria in that assessment I took, it seemed to be made for kids. I remember feeling like I wasn't being asked the right questions, or at the very least wasn't able to give an accurate response for the questions posed. I've noticed in the report now that she incorrectly stated that I don't have "motor tics", which I've had for a long time. For instance, I've had a really bad habit of jumping and flapping my hands when I'm really exited, wring my hands when anxious, and jerk my head and scratch the back of my neck when angry or irritated.

My evaluation was short but not even mine was that short !but I was referred by my GP and he had thought autism maybe that changes how you are diagnosed.

 

[Aecho]

My evaluation was short but not even mine was that short !but I was referred by my GP and he had thought autism maybe that changes how you are diagnosed.

Possibly, I don't have a GP anymore (thanks to obamacare), but I haven't really needed one since I haven't been sick in a while. Might be time to find one.

 

[nbtxdude]

Adult diagnosis is hard. We have learned over the years to adapt in order to function in society and that masks what we are sometimes. I think what got me my diagnosis was my history of speech therapy until sixth grade... I didn't have my parents alive to get them more childhood feedback, unfortunately.

It's like we need to take our masks off and be our true selves when going to be tested.

 

[pjcnet]

Adult diagnosis is hard. We have learned over the years to adapt in order to function in society and that masks what we are sometimes. I think what got me my diagnosis was my history of speech therapy until sixth grade... I didn't have my parents alive to get them more childhood feedback, unfortunately.

It's like we need to take our masks off and be our true selves when going to be tested.

That is a good point, for an experiment I'd love to do my absolute best to pretend I'm NT while being assessed to see if I could fake being NT long and well enough not to be diagnosed autistic again, especially since I'm most certainly on the autistic spectrum along with both my brothers because it was so blatantly obvious when I was a young child that I was one of the minority who was originally diagnosed in the 1970s (I also got re-diagnosed a few years ago). As an adult I have learnt to control many of my traits a lot of the time. I couldn't do a good job at emulating an NT permanently however as certain things would give me away over time, but there's still a fair chance I could manage it long enough to get a false negative diagnosis if I really put my mind to it. At lot of people are much better at this however and are able to fake (emulate) being an NT most of the time quite effectively and they're so used to doing this that it almost comes across semi naturally (it's not really natural however).

I believe there's loads of autistic adults who have learnt to emulate being an NT so well as adults that they'd fail to be diagnosed even though they're truly autistic, especially many autistic women who are often even better at it. If they tested assessing a good number of adults that were already diagnosed as being on the autistic spectrum when they were younger without the "experts" doing the assessments realising this, I bet a fair few wouldn't be diagnosed autistic again, thus proving that current diagnosis methods are not accurate. Unfortunately they're unlikely to ever do this experiment because "experts" don't want to be proven wrong and they know that if such test results got out it would create huge problems for them.

The problem is even autistic people who are emulating NTs so well not to be diagnosed still often need extra support. It's unnatural for them to act NT and it can cause a lot of stress and anxiety over time, also there's most likely situations when their autistic traits will show, E.g. in a particularly stressful situation. Being given a negative diagnosis can be very confusing and detrimental to someone who is truly autistic.


PS: I quoted the word "experts" above as I don't believe that any NT person can be truly an expert in autism because they haven't experienced it themselves. They should bring a lot of autistic people into the field, they're the only true experts and they should at least work alongside existing NTs. It's generally accepted that by far the best drug misuse councillors are ex drug users themselves, so why don't they understand that it's similar with autism too? There's no truly ex autistic people (despite what some may say there is no "cure"), but unlike being a drug addict, being autistic doesn't prevent many people from becoming useful members of society in many forms of employment.

 

[CMZ]

But I'm pretty sure I would fail a diagnosis. Because I found out later in life, I've learnt to suppress stimming and I can postpone my meltdowns until I am alone, and I can talk and communicate during shutdowns, and I have injected tone into an otherwise monotone voice. I also simulate facial expressions, it's all learned behaviour.

This sounds a lot like me (new member to these forums) on all counts. I can postpone meltdowns but doing so stresses out my symptoms; I can generally talk and communicate during shutdowns but it tends to be out of exerting a lot of energy to be courteous to whoever I'm talking to so that I don't appear rude to them; I've never understood small talk ("Hi. How are you?" "Fine. How are you?" "Fine." It always struck me as two people reading a script.); I've had to work a lot to get some tone in my voice (always being told when I was tween that spoke in such a monotone way); and I have hard time with facial expressions such as when people ask me to smile for a photo (it's not that I can't smile at all, but that I have a hard time concocting one out of nothing for a photo).

**********************************

To the topic of the original post I wonder myself what might happen if I went for a formal diagnosis, even though I know I have a lot that points to me being on the spectrum. I don't NEED a formal diagnosis except that having one could make it easier to explain things to others at work, which, in my case, could be a big help to be able to do so.

 

[Panthro]

I want to do a formal diagnosis, but I havent found anywhere that can do it for less than $1000. which doesnt make sense considering that 90% of us are without full time work and struggling financially. I am sorry, but if I blow that much money for a diagnosis then I better get it. LOL. This makes me nervous that I might spend the money only to be told that I dont have it even though I am positive that I do.