ASD diagnosis in Denmark - why do they avoid diagnosis?

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Tripodologia
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30 Jan 2017, 2:47 pm

Hi there,

I've been in the mental health system as a patient for a bit over 1.5 years in DK. For more than half a year now, I've been discussing with my psychologist the possibility of ASD being at the root of my anxiety and depressive symptoms, and she has mostly agreed that it sounds very plausible. Yet, despite me asking for it several times, nor she or the psychiatrist have ever done any structured screening or used any standardised tests with me, and every time I mention diagnosis they shrug it off. My general practitioner has even suggested not having a diagnosis may be best because it won't impact my life insurance, or my chances when looking for a job if I need to.

I have asked my GP if there is any other route I could follow to go through a proper diagnostic process, even if it's something I'd have to pay for. He doesn't know of any official, public or private, system where I could get screened. Only recently my psychologist has pointed me to the autisme forening, in case they could be of help. I've contacted them but still haven't heard back.

I'm really at a loss, and have no idea what to do. For one, I'm trying to be the most stubborn mo-fo I can be and I'm being persistent when voicing my needs, but for another, I just feel about giving up. If there are any others in here with similar experiences, and particularly in Denmark, I'd highly appreciate your input.


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ASPartOfMe
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30 Jan 2017, 7:50 pm

I am not from Denmark but one option if they agree is getting an "unofficial diagnosis". What that means is you are assessed and they give you their professional opinion but no diagnostic report is written. With nothing on the record, you can not be discriminated against specifically because you are autistic. This gets you the certainty to go forward knowing who you are. You will not get any benefits or supports if you so need, and you can be still screened out because of your autistic traits with no legal recourse.


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Tripodologia
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31 Jan 2017, 5:03 am

ASPartOfMe wrote:
I am not from Denmark but one option if they agree is getting an "unofficial diagnosis". What that means is you are assessed and they give you their professional opinion but no diagnostic report is written. With nothing on the record, you can not be discriminated against specifically because you are autistic. This gets you the certainty to go forward knowing who you are. You will not get any benefits or supports if you so need, and you can be still screened out because of your autistic traits with no legal recourse.

This seems feasible, thanks for the advise. I haven't really asked for an official diagnosis - I have a job, and I'm not considering to get benefits; I get a certain amount of support at the workplace due to the anxiety issues, but that's about it. The main reason I'm seeking a diagnosis is to improve my own self-awareness, my self-identification, and the way my therapy is structured. It'd also help me in communicating my needs and limitations to my family, friends, and partner, so an unofficial diagnosis (without written report) would do for me. They however seem to not be into structured screening at all, I'm afraid, official or not.


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Really enjoyed being a yellow-throated woodpecker while it lasted.

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Your neurotypical (non-autistic) score: 67 of 200
You are very likely neurodiverse (Aspie)


rowan_nichol
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01 Feb 2017, 9:20 am

It has been the case that autism has been missed in female patients and all the attention placed on conditions which can actually be the consequences of Autism in its various presentations.

Not all professionals may expect to find it in adults if not already diagnosed in childhood.

Still more may only know of the presentations described by Kanner, presentations which are possible to spot in early childhood but in fact only one part of our spectrum.

There are people out there who will assess privately. Some specialise in women. Some can work by serviced such as Skype as well as face to face. Some concentrate on identifying any cognitive profile which is autistic, then assess whether it has created sufficient difficulty to qualify for the "Disability" part of clinical diagnosis procedures.

Many diagnoses started with the patient's own suspicions which they followed up by research, which has sometimes helped the person doing the assessment to make the judgement calls.

The self knowledge from an assesebt can be very useful.



AspieUtah
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01 Feb 2017, 9:40 am

Another way to convince your clinicians to pursue a diagnostic assessment is to show them a recognized screening test score. One such screening test is the University of Cambridge Autism Research Centre's Autism Spectrum Quotien (AQ) test. Here is an auto-scoring version of the test republished verbatim by Wired magazine: ( https://www.wired.com/2001/12/aqtest/ ). The only change with the test is that the stated threshold score of 32 has been updated over the years since its original publication from 32 to 28, then 35 or 36.

So, you might convince your clinicians to pursure an assessment if your AQ score is over 32.

Good luck with whatever choice you make.


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BTDT
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01 Feb 2017, 11:34 am

Doctors often have a bias against what they cannot cure or for which there are no resources available for help.
Adult ASD typically falls in this category.

You see this with MS vs ALS. There are treatment options for MS. Nobody likes to give an ALS diagnosis.



Jensen
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02 Feb 2017, 10:59 am

I chose a psychologist with expertise in ASD and he tested me thoroughly. When my psychiatrist didn´t believe me, the psychologist wrote the psychiatrist, who called back to hear more.
That´s when he accepted and freed me of old, wrong labels.
I´ll send you a PB. :D


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Tripodologia
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03 Feb 2017, 11:42 am

AspieUtah wrote:
Another way to convince your clinicians to pursue a diagnostic assessment is to show them a recognized screening test score. One such screening test is the University of Cambridge Autism Research Centre's Autism Spectrum Quotien (AQ) test. Here is an auto-scoring version of the test republished verbatim by Wired magazine: ( https://www.wired.com/2001/12/aqtest/ ). The only change with the test is that the stated threshold score of 32 has been updated over the years since its original publication from 32 to 28, then 35 or 36.

So, you might convince your clinicians to pursure an assessment if your AQ score is over 32.

Good luck with whatever choice you make.

Thank you! I got a reply from a local psychiatrist asking me to fill the AQ and EQ tests, after which he'd get back (still waiting). AQ is 38 and EQ 16 (EQ version with 40 questions only).


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Really enjoyed being a yellow-throated woodpecker while it lasted.

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Your neurodiverse (Aspie) score: 139 of 200
Your neurotypical (non-autistic) score: 67 of 200
You are very likely neurodiverse (Aspie)


Tripodologia
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03 Feb 2017, 11:44 am

Jensen wrote:
I chose a psychologist with expertise in ASD and he tested me thoroughly. When my psychiatrist didn´t believe me, the psychologist wrote the psychiatrist, who called back to hear more.
That´s when he accepted and freed me of old, wrong labels.
I´ll send you a PB. :D

Hi, thanks so much! I wrote Ib Kollerup and Jette LaBianca, and got replies from both - do you know them or how they work? I got them recommended by the autisme forening. Kollerup only accepts paying clients, though (so my GP referral cannot be used), while LaBianca does assessments through referral too.


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Really enjoyed being a yellow-throated woodpecker while it lasted.

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Your neurodiverse (Aspie) score: 139 of 200
Your neurotypical (non-autistic) score: 67 of 200
You are very likely neurodiverse (Aspie)


Tripodologia
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03 Feb 2017, 11:47 am

rowan_nichol wrote:
It has been the case that autism has been missed in female patients and all the attention placed on conditions which can actually be the consequences of Autism in its various presentations.

Not all professionals may expect to find it in adults if not already diagnosed in childhood.

Still more may only know of the presentations described by Kanner, presentations which are possible to spot in early childhood but in fact only one part of our spectrum.

There are people out there who will assess privately. Some specialise in women. Some can work by serviced such as Skype as well as face to face. Some concentrate on identifying any cognitive profile which is autistic, then assess whether it has created sufficient difficulty to qualify for the "Disability" part of clinical diagnosis procedures.

Many diagnoses started with the patient's own suspicions which they followed up by research, which has sometimes helped the person doing the assessment to make the judgement calls.

The self knowledge from an assesebt can be very useful.

Thanks for your advise. I have since then contacted the autism association of Denmark and got a couple of psychiatrists specialised in adult ASD recommended, so I'm now hoping for the best.


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Really enjoyed being a yellow-throated woodpecker while it lasted.

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Your neurodiverse (Aspie) score: 139 of 200
Your neurotypical (non-autistic) score: 67 of 200
You are very likely neurodiverse (Aspie)


Jensen
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03 Feb 2017, 12:04 pm

Yes. At least LaBianca has a good reputation. Kollerup I found to be a bit on the arrogant side and rigid about results in AQ an EQ test. Actually I think, that women on the spectrum is kind of a new area to him.
I know someone, who "has" LaBianca. She is seing her, but therapy is with LaBiancas nurse.


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Tripodologia
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03 Feb 2017, 1:40 pm

Jensen wrote:
Yes. At least LaBianca has a good reputation. Kollerup I found to be a bit on the arrogant side and rigid about results in AQ an EQ test. Actually I think, that women on the spectrum is kind of a new area to him.
I know someone, who "has" LaBianca. She is seing her, but therapy is with LaBiancas nurse.

Thanks! I also think I prefer to go via my GP referral, even if it takes a little longer to get an appointment. Kollerup asked for my AQ and EQ test results straight away, so I guess that yeah, it seems pretty pivotal to him.


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Really enjoyed being a yellow-throated woodpecker while it lasted.

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Your neurodiverse (Aspie) score: 139 of 200
Your neurotypical (non-autistic) score: 67 of 200
You are very likely neurodiverse (Aspie)


Jensen
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03 Feb 2017, 1:54 pm

LaBianca has loooong waiting lists. I think somebody did some "footwork" for my friend who is her patient now. I´ll look into it and see, if I can find othersolutions. Otherwise, you could do as I did. I shall give you the names of the psychologist. I started with a referral because of depression - and I was depressed - but I also chose that particular clinical psychologist to find out, if I indeed am an aspie.


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Tripodologia
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03 Feb 2017, 1:57 pm

Jensen wrote:
LaBianca has loooong waiting lists. I think somebody did some "footwork" for my friend who is her patient now. I´ll look into it and see, if I can find othersolutions. Otherwise, you could do as I did. I shall give you the names of the psychologist. I started with a referral because of depression - and I was depressed - but I also chose that particular clinical psychologist to find out, if I indeed am an aspie.

Yeah, it's basically the same for me; my referral was for depression and anxiety, which I've had for years but turned severe after a break-up. It was after one year of therapy that I brought the ASD thing up. LaBianca said she could probably see me in about three months, and that's fine by me - I've waited so long already that three more months mean virtually nothing :)


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Really enjoyed being a yellow-throated woodpecker while it lasted.

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Your neurodiverse (Aspie) score: 139 of 200
Your neurotypical (non-autistic) score: 67 of 200
You are very likely neurodiverse (Aspie)


Jensen
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03 Feb 2017, 2:12 pm

I must say: Congrats .
Neither I understand why it is so difficult in Denmark.
Money?


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AspieUtah
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03 Feb 2017, 5:49 pm

Tripodologia wrote:
AspieUtah wrote:
Another way to convince your clinicians to pursue a diagnostic assessment is to show them a recognized screening test score. One such screening test is the University of Cambridge Autism Research Centre's Autism Spectrum Quotien (AQ) test. Here is an auto-scoring version of the test republished verbatim by Wired magazine: ( https://www.wired.com/2001/12/aqtest/ ). The only change with the test is that the stated threshold score of 32 has been updated over the years since its original publication from 32 to 28, then 35 or 36.

So, you might convince your clinicians to pursure an assessment if your AQ score is over 32.

Good luck with whatever choice you make.

Thank you! I got a reply from a local psychiatrist asking me to fill the AQ and EQ tests, after which he'd get back (still waiting). AQ is 38 and EQ 16 (EQ version with 40 questions only).

Your scores are beyond threshold in any case. I hope that your clinicians see them as helpful. Good luck!


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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)