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Saoirse

Confused about "working diagnosis"

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AspieFox
On 13/05/2016 at 7:05 PM, DebzMata08 said:

They have ceased it already your not wrong mine is down has ASD ive just seen 

Does anyone have a link or information about where it specifically says the UK will cease using the term Asperger's for the diagnosis? I don't think they've ceased the term.

I think we are still using the ICD-10 2016 version, where you can see at F84.5 Asperger's syndrome.

I'm undergoing diagnosis. I've been sent lots of questionnaires to fill in by one of the world leading diagnostic units for Asperger's called CLASS Clinic, in Cambridge, UK. CLASS stands for Cambridge Lifespan Asperger Syndrome Service. My GP and therapist (who is a psychologist) referred me to them using the word Asperger's. I have not received my final diagnosis (but scored in the Asperger's/Autism range on their questionnaires and tests they sent), so I don't know what they are going to write in the final report (I'm awaiting the 'informal interview' they want to do, as the final stage).

I've looked at the World Health Organization's ICD-11 (draft) which the UK uses, and Asperger's doesn't seem to be there anymore - HOWEVER, I checked out WHO's website about ICD, and it says that the 11th reveision is due in 2018. So I suppose we'll find out for sure in 201! :S

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AspieFox
On 13/05/2016 at 10:18 AM, Nesf said:

@Saoirse is in the UK, so they are probably using the ICD 10 rather than the DSM 5, I think that people are still diagnosed with Aspergers in the UK.

I think this is correct from what I've read. So it should still be Asperger's in the UK. http://www.autism.org.uk/about/diagnosis/criteria-changes.aspx says that in the UK the DSM isn't the main set used (the DSM is where the term disappeared in it's latest form) . As mentioned, we are using ICD-10, which clearly has Asperger's as a distinct diagnosis term.

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Nesf
8 hours ago, AveApollo said:

As it says in this NHS link, psychiatrists in the UK 'tend' to use ICD-10. This implies that there's an element of choice, so I suppose it depends on what the psychiatrist wants to use? http://www.nhs.uk/news/2012/12December/Pages/Aspergers-dropped-from-mental-health-manual-DSM-5.aspx

Yes, I think that this is the case. I was diagnosed in the UK but with the DSM, not the ICD-10.

 

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Dont fit in on here

I was diagnosed with the DSM V too 

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RiRi

I don't live in the UK, but I was also diagnosed with the DSM-5. However, I think if I would have gotten diagnosed with the DSM-4 that I would have gotten a moderate Asperger's syndrome diagnosis since I don't think I had speech delay.

@Saoirse How much more do you have to wait for your follow-up appointment? Did they tell you? I'm only asking to ask how you're doing, whether you're coping better, or how you're coping with the anxiety of the wait. :) 
 

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Saoirse

@Mackelets My follow up appointment is in two weeks. And I am waitlisted for the local Autism service. So I am not sure what will come out of the follow-up appointment since it is through the local hospital, not the Autism service.

I am not coping well with the anxiety, I have been having anxiety dreams and not sleeping well. Do you have any suggestions for coping with the anxiety?

Thanks

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RiRi

@Saoirse Well, to be honest, I didn't cope well with the anxiety. I tried doing different things, but the thought of me being misdiagnosed was always in the back of my mind and I was just really scared. I tried doing things that took my mind off it, and I talked to members on here about my symptoms and my anxiety and it helped a bit, but the anxiety was just always there. I think someone said mentioned in a thread that if you didn't get the diagnosis to get a second opinion and that helped. So towards the end of the wait, I thought to myself that if I didn't get diagnosed that I would try to find someone else. Talking to people here, about the symptoms and anxiety helped me because they reassured me that I possibly had it based on our interactions and the symptoms. So it helped to get some reassurance. I think I read your intro thread and based on that, to me it seems like you are possibly on the spectrum.

Maybe you can create a thread where you ask how people coped, just a suggestion, maybe it will help you take your mind off it for a bit/help with the anxiety a bit? :) You can also try to do things that you will be really focused in, things you enjoy doing and maybe that will help you take your mind off it for at least a little while? That's all the advice I have for now. I'll post more if I come up with something else. :) I tried typing this as fast as I could. :) 

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Nesf
11 hours ago, Saoirse said:

@Mackelets My follow up appointment is in two weeks. And I am waitlisted for the local Autism service. So I am not sure what will come out of the follow-up appointment since it is through the local hospital, not the Autism service.

I am not coping well with the anxiety, I have been having anxiety dreams and not sleeping well. Do you have any suggestions for coping with the anxiety?

Thanks

I was very anxious while waiting for my diagnosis assessment, too. I was really worried that I may not have it, or had something else, or have nothing at all, that I'm just a rather incompetent person who is obsessive, doesn't get on well with people and can't hold down a job. I talked to a couple of people on the spectrum I had met locally via a local support group, and they told me that they thought I was on the spectrum. It was really hard to do this, but it reassured me, and they gave me support. I asked my mum her opinion, and she said that she thought I had Asperger's, and added that at one point it was suspected when I was a child that I had autism. All these helped to reassure me that all of this was real, and not just in my head.

In my experience of being on this forum for a couple of years and seeing people come here because they suspect that they are on the spectrum, in nearly all cases those people go on to get the diagnosis. If a person suspects that they are on the spectrum, then there is nearly always good reason for it. All the anxiety, research, searching, self-analysis are a good indication that the person is likely to be on the spectrum, as these in themselves are ASD traits.

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Saoirse

@Nesf It is good that I am not abnormal in being anxious about a diagnosis. I guess I am just really worried that they will say I don't have it. Since discovering autism, I have felt like I belong in this group of people, finally there are those who think like me, and I don't stick out as the weird one. I have certainly done extensive research, I guess autism has become one of my obsessions, haha.

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Gone home
57 minutes ago, Saoirse said:

I guess I am just really worried that they will say I don't have it.

There are tight budgetary issues and their reputation is also at stake ... I think they are usually pretty sure before referring ...

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AspieFox
On 22/05/2016 at 9:30 PM, Saoirse said:

@Nesf It is good that I am not abnormal in being anxious about a diagnosis. I guess I am just really worried that they will say I don't have it. Since discovering autism, I have felt like I belong in this group of people, finally there are those who think like me, and I don't stick out as the weird one. I have certainly done extensive research, I guess autism has become one of my obsessions, haha.

Me too, in exactly the same position. Still waiting for the appointment date, after nearly 3 months. I've passed the screening tests. Also, I'm worried that my AS obsession might subconsciously make me fit myself into the diagnosis when discussing/considering my traits. I suppose this is paranoia due to NT friends or family telling me "you don't have autism, you make eye contact and have empathy, you're not strange or different, you're just looking into things with too much detail again" etc. Deep down I know they're wrong, but sometimes I wonder.

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SeanS
On 22/05/2016 at 6:30 AM, Saoirse said:

@Nesf It is good that I am not abnormal in being anxious about a diagnosis. I guess I am just really worried that they will say I don't have it. Since discovering autism, I have felt like I belong in this group of people, finally there are those who think like me, and I don't stick out as the weird one. I have certainly done extensive research, I guess autism has become one of my obsessions, haha.

I know the feeling. I felt the same way when I discovered autism. It was as though I had finally found a group of people I belonged with. But I did worry that I was just coming to act like an Aspie because I was reading so much about it - ASD become an obsession for me too. Well, I finally got an appointment at an autism clinic and my Aspieness was made official.

All the best for your journey! :) 

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Saoirse

Anyone I have told so far says I can't have Asperger's because I make eye contact and don't fit what they perceive as the criteria. I still worry that I am acting "Aspie" just because I have been doing lots of research. I put a lot of pressure on myself to act normal, so I feel guilty lowering my standards. I have an appointment on Friday, so I guess the anxiety is just getting to me. What if they say I can't have autism?

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Gone home

Don't let anyone feed your anxiety about eye contact.

49 minutes ago, Saoirse said:

I feel guilty lowering my standards

Its not about standards, but your differences and just being deeply honest with yourself and the assessor.

Its quite hard to confront when your'e accustomed to 'winging it' trying to be neuro-typical.

Try to let the worry  go ...

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SeanS
9 hours ago, Saoirse said:

Anyone I have told so far says I can't have Asperger's because I make eye contact and don't fit what they perceive as the criteria.

People have told me that in the past too. I am good at making an appropriate amount of eye contact (though I don't like particularly like to). For most people I don't fit their conception of what autism/Asperger's looks like. So I know what you're saying.

I too went through a great deal of anxiety prior to my diagnosis (July 17th last year). I was thinking it might all be in my head or that I would be diagnosed with some other thing and that people would think I was crazy. Even though in my heart I knew I was autistic since my 'awakening' (May 7th last year). When I finally got my diagnosis it was like all the weight of the world had been taken off my shoulders. Whatever the outcome is, you will have some answers for questions that are very important to you.

Don't worry about pressure or standards. The person you meet with will be trained to make an appropriate assessment. They'll be able to tell even if you do make lots of contact. Eye contact is just a behaviour, it doesn't really have that much to do with Aspieness. Being autistic means you have a different way of thinking and experiencing the world, and that is what the assessor will be looking for.

I should add that I just looked through your other posts and I see you scored 44/50 on the AQ test. I can relate to much of what you've posted here on Asperclick too, as I'm sure nearly every other member of this forum can. Probably everyone who sees this thread has been told they're too blunt, gets stressed out with too much stimulus and missed out on the social handbook :)

Even if you go to your appointment and they say they don't think your on the spectrum you can still get a second opinion. But having said that, you do have a working diagnosis and that probably means a health professional has seen your unique cognitive profile and developed an opinion that you're on the spectrum, but they don't have the right letters after their name to make it official.

I hope you feel at least a little better. And remember your Asperclick friends will be with you in spirit on your big day :D

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Nesf
12 hours ago, Saoirse said:

Anyone I have told so far says I can't have Asperger's because I make eye contact and don't fit what they perceive as the criteria. I still worry that I am acting "Aspie" just because I have been doing lots of research. I put a lot of pressure on myself to act normal, so I feel guilty lowering my standards. I have an appointment on Friday, so I guess the anxiety is just getting to me. What if they say I can't have autism?

As @SeanS also says, eye contact is just one thing they look at, just one thing that can be an indicator that you are on the spectrum. Also, it's not just a matter of whether you make eye contact or not, but also the quality of the eye contact, and how you feel about it. For example, eye contact is about knowing when to initiate it and when to look away, and many people with ASD can make eye contact but they can't always gauge how long to maintain it, when to look away, when to initiate. Or they can do these things, but don't feel comfortable.I can make eye contact too, but quickly become uncomfortable and have to look away.

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Saoirse

Well, I thought I would update you guys on what is going on. I had another meeting with a psychiatrist today. They confirm that they are pretty sure that I have high functioning autism, but they acknowledge that they cannot make an official diagnosis. I am now on a waiting list for the official diagnosis.

I feel relieved that they think I have it and it is not all in my head. I am also just glad the appointment is over, as it was very draining.

Saoirse

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AspieFox
On 5/13/2016 at 7:05 PM, DebzMata08 said:

They have ceased it already your not wrong mine is down has ASD ive just seen 

Just thought to update on what they call it Asperger Syndrome or Autism Spectrum Disorder/Condition, because I have my official diagnosis from the specialist adult clinic in Cambridge last month. AAAAnnd it says...

"I am of the view that he does meet the formal diagnostic criteria for an autism spectrum condition, according to the (DSM-IV)*{footnote}, more specifically, Asperger's Disorder {in bold} or Asperger Syndrome (AS) {also in bold}."

*The footnote reads..."In the recently updated DSM-5 system, Asperger's disorder has been included under a more general term: Autism Spectrum Disorder. However, a formal diagnosis according to the DSM-IV system will continue to be recognized by the DSM-5."

So it looks like the psychologist covered all the grounds lol! So, I could possibly choose to say Asperger Syndrome, or Autism Spectrum Disorder. I've actually just been telling people that need to know "I have a form of Autism", as I think people might know what Autism is but not so much Asperger Syndrome. However I sometimes say Asperger Syndrome.

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