Traumatising experience of the diagnostic assessment

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B19
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20 Mar 2015, 5:08 pm

This is just getting worse and worse. You were treated as a training opportunity? Whose needs were being served here? Did they seek your permission? This is appalling, especially for a person who may be on the spectrum.



Jenoir
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20 Mar 2015, 5:13 pm

B19 wrote:
This is just getting worse and worse. You were treated as a training opportunity? Whose needs were being served here? Did they seek your permission? This is appalling, especially for a person who may be on the spectrum.


Yes, it did somewhat compound the humiliation of being presented with picture books and toys. They did ask for permission, but only once I was sat in the room with all three staring at me ready to go. I just reluctantly complied with everything through politeness I guess.



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20 Mar 2015, 5:35 pm

Glad to hear your complaint has been lodged -hopefully they'll give you another, more suitable, assessment swiftly.

I think it's fairly common for trainees to be invited to at least some interviews (not sure about full diagnostic procedures) but I definitely sympathise with the experience - when I moved areas, I was given an appointment with a psychiatrist, a social worker and a medical student. Like you, they did give me the option - but I was just about to walk into the room and they were already seated with notepads out.

I found it very intimidating. My first appointment at CAMHS was done with a trainee too, but it was organised much more discretely and wasn't intimidating at all.



Jenoir
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24 Mar 2015, 11:17 am

Hey, so I thought I should update this as I just received a call from one of the psychologists that saw me that day. (She was second observer so we didn't actually interact but her role is also that of services manager too so her duty is to tend to the complaint.) She was nice and said she agreed with some of the points in the complaint and they will definitely not be subjecting future 'clients' to so many people (six were involved in my assessment) and will look at the use of child-like props. She listened to what I had to say and was keen for me to come and see her and discuss feedback. She thinks I meet the threshold for a diagnosis of high functioning autism. I'm going to go and see them in early April to explore and discuss how they came to that decision and discuss my complaint in more depth.



Adamantium
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24 Mar 2015, 11:39 am

These sound like really positive developments.

Your effort in complaining may result in a much better experience for all those who come after you. That's a great accomplishment.

Good luck with the rest of the process.



Jenoir
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24 Mar 2015, 11:43 am

Adamantium wrote:
These sound like really positive developments.

Your effort in complaining may result in a much better experience for all those who come after you. That's a great accomplishment.

Good luck with the rest of the process.


Thank you. :D



AspieUtah
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24 Mar 2015, 11:44 am

Adamantium wrote:
These sound like really positive developments.

Your effort in complaining may result in a much better experience for all those who come after you. That's a great accomplishment.

Good luck with the rest of the process.

Exactly! Congratulations.


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


Jenoir
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24 Mar 2015, 11:47 am

AspieUtah wrote:
Adamantium wrote:
These sound like really positive developments.

Your effort in complaining may result in a much better experience for all those who come after you. That's a great accomplishment.

Good luck with the rest of the process.

Exactly! Congratulations.


Thank you too :D



B19
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24 Mar 2015, 4:54 pm

You did well. Good for you :)



alanaargh
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24 Mar 2015, 6:42 pm

I was diagnosed in August of 2014. I was initially referred to CAMHS for acute anxiety and when I got my first appointment my mum was given a questionnaire to fill out and so was I. I was also interviewed by a mental health nurse. A few weeks later we received a letter stating I was to be given an assessment for Autistic Spectrum Disorder, which was an absolute shock (this was all in March 2014 by the way), I thought it was all wrong until I researched Autism. Anyway I was assessed through, I think, three 2 hour meetings. They were very informal and it was pretty much just a clinical psychologist asking me and my parents about my developmental history and my life in general growing up and now. The SEN at my school also contacted the psychologist assessing me. The final part of the assessment was a meeting with the clinical psychiatrist, just to rule other things out. My entire assessment was just me and my parents talking about my life and the struggles I've always had. I was lucky enough to get my diagnosis so quick because apparently they had just "cut down the waiting lists". My experience with diagnosis was not so much traumatic but just confusing and weird. It was a massive revelation because I just thought I was crazy. I think I have been lucky.



Jenoir
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25 Mar 2015, 3:54 am

B19 wrote:
You did well. Good for you :)


Thank you for your support B19!



Jenoir
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25 Mar 2015, 3:59 am

alanaargh wrote:
I was diagnosed in August of 2014. I was initially referred to CAMHS for acute anxiety and when I got my first appointment my mum was given a questionnaire to fill out and so was I. I was also interviewed by a mental health nurse. A few weeks later we received a letter stating I was to be given an assessment for Autistic Spectrum Disorder, which was an absolute shock (this was all in March 2014 by the way), I thought it was all wrong until I researched Autism. Anyway I was assessed through, I think, three 2 hour meetings. They were very informal and it was pretty much just a clinical psychologist asking me and my parents about my developmental history and my life in general growing up and now. The SEN at my school also contacted the psychologist assessing me. The final part of the assessment was a meeting with the clinical psychiatrist, just to rule other things out. My entire assessment was just me and my parents talking about my life and the struggles I've always had. I was lucky enough to get my diagnosis so quick because apparently they had just "cut down the waiting lists". My experience with diagnosis was not so much traumatic but just confusing and weird. It was a massive revelation because I just thought I was crazy. I think I have been lucky.


Glad to hear of a good experience! (I like to swap that word 'disorder' for difference.)



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25 Mar 2015, 5:45 am

Jenoir wrote:
For the record, I have officially complained about my experience. I expected it to be aligned to male stereotypes but the extent to which is was age-inappropriate (and intellectually inappropriate) was a appalling. Hopefully they will develop a better system so future female service users and high functioning adults do not endure such nonsense.


Most of the kid stuff applies to us just the same. Give and take, empathy tests, and all that jazz works perfectly, even if it seems childish. They'll also ask a whole heap of things that seem meaningless to you.

And there's really not much difference between males and females with an ASD insofar as diagnosable symptoms go. Sure, the narrow interest will probably be different (males tend to like male things, but there's a whole heap of androgynous things anyway, like music for example, so not always), but it'll still be there. You can go through all the symptoms and apply them to males and females all the same.



Jenoir
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25 Mar 2015, 6:07 am

Dillogic wrote:
Jenoir wrote:
For the record, I have officially complained about my experience. I expected it to be aligned to male stereotypes but the extent to which is was age-inappropriate (and intellectually inappropriate) was a appalling. Hopefully they will develop a better system so future female service users and high functioning adults do not endure such nonsense.


Most of the kid stuff applies to us just the same. Give and take, empathy tests, and all that jazz works perfectly, even if it seems childish. They'll also ask a whole heap of things that seem meaningless to you.

And there's really not much difference between males and females with an ASD insofar as diagnosable symptoms go. Sure, the narrow interest will probably be different (males tend to like male things, but there's a whole heap of androgynous things anyway, like music for example), but it'll still be there.


I think we can agree to disagree that it works perfectly. In my view, high functioning adults should not be put into a regressive setting even if certain elements still apply beneath the surface of the task.

Regards male/female. I'm actually not keen on gender stereotypes myself and see gender as quite spectral too, but Baron-Cohen's tests have been formulated based predominantly on the observations of boys/men have they not? 'Extreme male brain' theory. The bias is there and quite clear in many of the questions asked. Moreover, the very perpetuation of the myth of extreme male brain theory is prohibiting the referral of many girls to the diagnostic stage where they might be more easily be picked up by the ADOS testing.

http://www.theguardian.com/lifeandstyle ... led-by-nhs

As an aside, you mention narrow interests - I've been diagnosed but I can't say my interests are narrow but I do get obsessed over the subjects I'm taken by which include philosophy, music, feminism, literature, psychology, neuroscience quantum mechanics and politics to name just a few. I guess everyone is individual eh!



Adamantium
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25 Mar 2015, 8:59 am

Jenoir wrote:
As an aside, you mention narrow interests - I've been diagnosed but I can't say my interests are narrow but I do get obsessed over the subjects I'm taken by which include philosophy, music, feminism, literature, psychology, neuroscience quantum mechanics and politics to name just a few. I guess everyone is individual eh!

I think this fits with B.3 in the ASD diagnostic criteria, specifically, "excessively circumscribed or perseverative interests."

People tend to focus on the "excessively circumscribed" part but "excessively perseverative" part is just as much a criterion for the diagnosis.

My interests are somewhat broad, like yours, but the way that I go on multi-year binges of researching them with obsessive hyperfocus is not. My understanding is that this is not at all unusual in people with ASDs, though there is a lot of variation in this, which is why the diagnostic criteria were written in a way that acknowledges both the perseverative and circumscribed aspects.



Jenoir
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25 Mar 2015, 9:01 am

Adamantium wrote:
Jenoir wrote:
As an aside, you mention narrow interests - I've been diagnosed but I can't say my interests are narrow but I do get obsessed over the subjects I'm taken by which include philosophy, music, feminism, literature, psychology, neuroscience quantum mechanics and politics to name just a few. I guess everyone is individual eh!

I think this fits with B.3 in the ASD diagnostic criteria, specifically, "excessively circumscribed or perseverative interests."

People tend to focus on the "excessively circumscribed" part but "excessively perseverative" part is just as much a criterion for the diagnosis.

My interests are somewhat broad, like yours, but the way that I go on multi-year binges of researching them with obsessive hyperfocus is not. My understanding is that this is not at all unusual in people with ASDs, though there is a lot of variation in this, which is why the diagnostic criteria were written in a way that acknowledges both the perseverative and circumscribed aspects.


Haha - 'multi-year binges of researching them with obsessive hyperfocus'. Sounds familiar! Where would the world be without folk with such inclinations I have to ask?