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PhilAspie2011
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28 Jan 2017, 5:29 am

Hello Members,

I'm 47 years old and I have no doubts that I have Asperger's Syndrome. I have been seen twice under the NHS for a diagnosis and both times was told I'm not autistic. I'm afraid of boring you with my life history so I will simply say that from the age of 3 or 4 I didn't fit in. The only person that showed any interest in me was my mother so I stuck to her like glue. My father constantly hurled verbal abuse and unnecessary discipline at me, everything I did infuriated him and I could never understand why which left me very confused and very frightened whenever he was around. My siblings followed suit and it soon became a living hell all I wanted was to be like my siblings but as there was no place for me there I stayed very close to my mother. I was rejected by family then rejected by children and teachers all the way through school and then again all through my working life. I reached 30 and was introduced to my local Mental Health Team in 2000 after I became suicidal. I was diagnosed with depression and anxiety. To this day I have files and flies of mental heath history none of which explain why I am the way I am. A private psychologist told me ten years ago that I showed all the symptoms of having Asperger's Syndrome and showed me some info on it. I refused to believe him and never pursued it further. To cut a very long story short I now believe he was spot on but the mental health and autism professionals within the NHS will not have it even after scoring 47 on an AQ test. What can I do to be heard? I haven't worked since 2000 and pretty much stay within the confines of my home which is no life at all. I do go out when I have to but have my wife with me at all times.



liveandrew
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28 Jan 2017, 8:22 am

Unfortunately, you haven't described any of the criteria associated with autism/asperger's other than the fact that you don't fit in which I would say is a byproduct rather than a symptom in of itself and may also be attributed to other conditions, disorders or illnesses. Do you have any of the triad of impairments (social interaction, communication and imagination), highly-focused interests and sensory issues?

Have you tried taking any of the online tests? These can be a decent pointer to whether seeking a diagnosis is worthwhile.


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Diagnosed: Asperger's Syndrome (ICD-10)
Self-Diagnosed: Aphantasia
Your neurodiverse (Aspie) score: 152 of 200
Your neurotypical (non-autistic) score: 46 of 200

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iliketrees
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28 Jan 2017, 8:51 am

liveandrew wrote:
Have you tried taking any of the online tests? These can be a decent pointer to whether seeking a diagnosis is worthwhile.

The test he did (AQ50) is an actual screening tool, so more accurate than that quiz (which has no validity) that you linked, and he's seeked a diagnosis twice but in both cases found not to be autistic.

A score of 47 on the AQ just means you pass the screening and get tested further, it is not a diagnostic tool - it is possible to score that high and not be autistic. The autism professionals have twice said you're not, so wouldn't that suggest that although you have symptoms, you don't meet the criteria?



liveandrew
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28 Jan 2017, 9:00 am

iliketrees wrote:
liveandrew wrote:
Have you tried taking any of the online tests? These can be a decent pointer to whether seeking a diagnosis is worthwhile.

The test he did (AQ50) is an actual screening tool, so more accurate than that quiz (which has no validity) that you linked, and he's seeked a diagnosis twice but in both cases found not to be autistic.

A score of 47 on the AQ just means you pass the screening and get tested further, it is not a diagnostic tool - it is possible to score that high and not be autistic.


Thanks, I didn't even see that part of the post. I must have had a brain-fart or something!


_________________
Diagnosed: Asperger's Syndrome (ICD-10)
Self-Diagnosed: Aphantasia
Your neurodiverse (Aspie) score: 152 of 200
Your neurotypical (non-autistic) score: 46 of 200

Listener of all things noisy, viewer of all things bloody, writer of all things sh*t.


harry12345
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28 Jan 2017, 10:53 am

Have you tried contacting the people here?

Autism Sussex

What I expect is the equivalent charity here, where I live, in the North West of England allows adults over 16 to self refer.

http://www.autismsussex.org.uk/our-services/adult-services/

Quote:
Referrals can be made by individual’s themselves, a family member or a professional.


Hope this helps.



PhilAspie2011
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28 Jan 2017, 1:18 pm

Ok, today I did a more in depth test and scored 179 of 200, I'm very likely neurodiverse. This test was so much better as it focused on more specific situations and behaviours that fit my life. I realise now that I should have explained more about my behaviour/habits and social interactions. I am 47 years old, to cover everything I have struggled with in my life as you well know would have taken forever! Thank you all for your input it is much appreciated, I will try the link for a self referral.

I must admit that when I saw your replies my first reaction was no not you too! It was my fault, I should have shared more!



iliketrees
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28 Jan 2017, 1:21 pm

Quote:
Ok, today I did a more in depth test and scored 179 of 200, I'm very likely neurodiverse. This test was so much better

It's worse than the one you already did though, it's not even accurate as a screening tool.



PhilAspie2011
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28 Jan 2017, 1:37 pm

Whatever! It sounds to me that you just want to irritate someone and you've chosen me, congratulations!



iliketrees
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28 Jan 2017, 1:44 pm

PhilAspie2011 wrote:
Whatever! It sounds to me that you just want to irritate someone and you've chosen me, congratulations!

How'd you jump to that conclusion? It's a fact that the AQ50 is a screening tool used in medical contexts, while the "Aspie Quiz" is nothing more than an online quiz people do for fun.



PhilAspie2011
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28 Jan 2017, 1:58 pm

I first heard about Asperger's ten years ago from a private psychologist but didn't look into it unit 2016, that should tell you that i'm very new to this and maybe I don't know what you know so instead of negative criticism why know tell me something that may help!



SwingateLane
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28 Jan 2017, 2:05 pm

Autism Sussex run groups - but quite frankly if you're not their target audience - you're on the ball, married.... i.e. The less capable go there. There is a group in Littlehampton (and burgess hill) for the more able and I can give you their details... check PMs - have Sent you details of where to to get certified in West Sussex

Best wishes



Last edited by SwingateLane on 28 Jan 2017, 4:34 pm, edited 1 time in total.

iliketrees
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28 Jan 2017, 2:11 pm

PhilAspie2011 wrote:
I first heard about Asperger's ten years ago from a private psychologist but didn't look into it unit 2016, that should tell you that i'm very new to this and maybe I don't know what you know so instead of negative criticism why know tell me something that may help!

It's not negative criticism, I'm telling you the validity of the tests and what it means, or at least trying to.

The one you scored 179 on is an online quiz with no medical usage.

The one you scored 47 on is a tool used to screen for autism - meaning that if you score above 32, you are further tested. It is possible to score 32-50 and not be autistic, it's to rule people out rather than confirm anything.

You can have symptoms of autism but not fit the criteria, and being tested twice suggests that this is the case.

Is this clearer, or am I still doing something wrong?



PhilAspie2011
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28 Jan 2017, 4:28 pm

And NHS so called professionals cannot be wrong can they? You obviously have never heard of misdiagnosis either! I rest my case!! !! !! !! !



smudge
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28 Jan 2017, 4:31 pm

iliketrees, like that private psychologist - is trying to help you. Please listen to her.


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ArielsSong
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28 Jan 2017, 4:35 pm

PhilAspie2011 wrote:
And NHS so called professionals cannot be wrong can they? You obviously have never heard of misdiagnosis either! I rest my case!! ! ! ! ! ! ! !


Ask yourself this: How many people will you go to for a diagnosis, in the hope that you eventually get the answer you want? 3, 10, 100?

And how confident will you feel in a diagnosis when multiple professionals have told you that you don't have a specific disorder, and then one does? Suddenly, the one that does is the correct one?

You seem very defensive and angry, but the simple fact so far is that you have been told on multiple occasions that you don't fit the criteria for autism. You disagree, so you want to keep asking more people until one of them says that you do.

iliketrees is giving you a very reasonable response, regarding the tests that you've mentioned. And yet, 9 exclamation marks?



SwingateLane
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28 Jan 2017, 4:36 pm

The referral service in West Sussex is pretty good...