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  #1  
Old 16th August 2018, 18:47
Woozle Woozle is offline
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Default The Autism, Asperger's and ASD Thread

There doesn't seem to be an 'official' thread for this, so I thought I might as well start one.

I've recently started seeing a counsellor and she thinks (actually, seems to feel quite strongly) that I may be on the spectrum, and that having a diagnosis would be helpful for me - which I agree with. I've made an appointment to see my GP in a few weeks. That said, I've heard some areas of the UK don't refer adults for ASD diagnosis, only kids, so I'm a bit worried this is going to be a non-starter.

Are there many of us on the forum? Anyone out there who was diagnosed later in life? How was it, and did you have to wait long to see a specialist? Particularly those living in the Hampshire area..? (Bit of a long shot, I know!) I've heard they want your parents to come to the interview to say what you were like as a child, is this true? Because I'd rather not involve my parents, if possible.
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  #2  
Old 16th August 2018, 22:16
gregarious_introvert gregarious_introvert is offline
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Default Re: The Autism, Asperger's and ASD Thread

I'm not from Hampshire, but I did receive my diagnosis somewhat late in life (in 2016, at the age of 54); with regard to being referred for diagnosis, the Autism Act of 2004 states that everyone is entitled to "a clear path to diagnosis..." so you have a legal right to be assessed. What can be an issue, however, is whether your area has an adult autism unit or whether you may have to travel - I live in Derbyshire, but had to travel to South Yorkshire as there is no adult autism unit in Derbyshire.

My waiting time was quite short, about three months if I recollect correctly; the only difficulty I had (once I became aware of the existence of the Sheffield Adult Autism and Neurodevelopmental Service - or SAANS) was convincing them to accept a referral from a social worker - as I don't have a GP - and setting up a mechanism by which SAANS could receive remuneration (I got the local CCG to accept responsibility for payment in the absence of a GP). Once I managed to negotiate those hurdles, things moved quite quickly. It is true that the psychiatrist wanted to know about my childhood, but my own recollections were sufficient for this - in any case, I had no living relatives by the time of my assessment, so there was no possibility of any third party corroboration. The actual assessment took half a day and I was given my diagnosis there and then.

I hope this helps?
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  #3  
Old 16th August 2018, 22:22
genovese genovese is offline
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Default Re: The Autism, Asperger's and ASD Thread

Quote:
Originally Posted by Tubbs
Anyone out there who was diagnosed later in life? How was it, and did you have to wait long to see a specialist?
Hi tubbs

I helped my cousin with getting a diagnosis she was 33 at the time.
First we did a few of the online autism questionnaires. They all came back with an 'on the spectrum' result.
Then we contacted the national autistic society :
https://www.autism.org.uk/about/diagnosis/adults.aspx

One of their people phoned back and gave some advice and guidance of what to say to the GP. One of them was the online questionnaire results.
Saw the GP. He made the referral to a specialist. Long, long waiting list. I think it was 11 months. We wrote a letter to the specialist's appointment secretary saying we are prepared to come with 24 hours notice if you have any cancellations. Luckily, there was a cancellation and got seen in 2 months.

At the specialists, they ask you to bring in several filled in questionnaires (that they provide in advance). They also sit, talk with you, go through your life history.
They very much like to talk to parents as well. Stuff like your behaviour as a kid, what age did you learn to walk, talk, all that. If you're not keen on your parents being there, then maybe just have those sorts of answers prepared and ready. Alternatively, tell them you don't want your parents involved but you are willing to provide/find out any answers to particular questions they would like to ask them. If they give you these 'Parent Questions' in advance, you could do your best to find out the answers without your parents specific involvement.
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  #4  
Old 17th August 2018, 00:30
Mr. Spaceman Mr. Spaceman is offline
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Default Re: The Autism, Asperger's and ASD Thread

I got referred for an autism assessment by my GP about a year ago and only last month got a letter saying I'd reached the top of the waiting list. They sent me a questionnaire to fill in and also said it would be helpful (though not essential) to speak to someone who has known me since I was a child to ask me about my childhood and particularly about ages 4-5. I gave them my mum's number and they did a phone interview with her that lasted about 40 minutes, though I don't think my mum could remember a great deal given we're talking 40 odd years ago. Now I'm waiting for a face to face assessment which should be in the next few weeks.
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Old 17th August 2018, 23:01
Woozle Woozle is offline
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Default Re: The Autism, Asperger's and ASD Thread

Wow, thank you gregvert, genovese, Mr. Spaceman for all the very helpful replies. They've given me plenty to mull over. I'm feeling a bit better about involving my parents now I know that they wouldn't necessarily have to be present the whole time, or at all.

Quote:
Originally Posted by gregarious_introvert
the Autism Act of 2004 states that everyone is entitled to "a clear path to diagnosis..." so you have a legal right to be assessed.
I didn't know that! Good to know, thanks Before my appointment I might print out the Autism Act 2004 to show to the doctor, just in case!

Good luck with your face to face assessment Mr. Spaceman.

Is it possible to contact the National Autistic Society any way other than phone? (which is literally the worst method of communication for me)
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  #6  
Old 18th August 2018, 00:25
genovese genovese is offline
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Default Re: The Autism, Asperger's and ASD Thread

Quote:
Originally Posted by Tubbs
Is it possible to contact the National Autistic Society any way other than phone? (which is literally the worst method of communication for me)
Online form
https://www.autism.org.uk/services/h...main/form.aspx
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  #7  
Old 18th August 2018, 13:55
firemonkey firemonkey is offline
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Default Re: The Autism, Asperger's and ASD Thread

The National Autistic society has a good forum.
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  #8  
Old 18th August 2018, 22:01
Purplesnarf Purplesnarf is offline
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Default Re: The Autism, Asperger's and ASD Thread

I wouldn't be surprised if I was on the spectrum, autism and schizophrenia has occurred in my family.
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  #9  
Old 19th August 2018, 03:10
Danica Danica is offline
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Default Re: The Autism, Asperger's and ASD Thread

I was diagnosed with ASD four years ago.

A therapist I was seeing at the time initiated a discussion about Autism and suggested that I may be on the spectrum. Prior to that, I'd often thought that my issues were down to more than just depression and SAD because I've always felt disconnected from others. We decided that she would put me forward for an assessment and I couldn't believe it when I heard from them just one month later.

I had two assessments at my home and my mother was with me on both occasions. The first one lasted about an hour and fifteen minutes, and I was asked about my childhood, mental health issues and life in general. I'm glad my mum was there as she was able to give a different perspective on things, which is very important for the assessor because sometimes the people close to us (a parent especially) can offer another insight. We also both filled in a questionnaire and were told that some one else would be visiting within two weeks because he wasn't able to diagnose.

The final assessment lasted two hours and was similar to the first, but a lot more in depth and I felt exhausted afterwards because I remembered so many things from my past that I thought I'd forgotten. My assessor was Veronica (Vicky) Bliss, an American author and therapist based in Preston who is also on the spectrum. She was softly spoken, and was easy to talk to - I wished she was my therapist instead of the one I was seeing! It was so refreshing to feel understood, finally. I was told that I had Aspergers but it was now called ASD and that I would be eligible to apply for PIP. I still haven't yet because I'm aware that it's very difficult to get and I'm already on ESA.

When I told my therapist that I was on the spectrum she just wished me luck and said that the NHS doesn't provide therapy for Autistic people and simply discharged me. We never developed a rapport and I wasn't making any progress so that made sense, but I still felt abandoned because it was so abrupt. At that time, I really needed someone to talk to about my diagnosis although it didn't have to be her.

Unfortunately, four years after my diagnosis, my life hasn't changed at all but at least I know myself a little better so that's something!
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  #10  
Old 19th August 2018, 11:08
gregarious_introvert gregarious_introvert is offline
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Default Re: The Autism, Asperger's and ASD Thread

^I had a very similar experience with regard to the NHS: as soon as I was diagnosed, I was discharged from the CMHT because, as I was told, the local mental health team is not qualified to deal with people with ASD (they were supposed to be treating me for depression and agoraphobia, not the ASD itself). When I queried this with the NAS, I was informed that ASD is a disability, not a mental condition.

Danica, you should apply for PIP. As ASD is a disability, you should receive the appropriate benefit! I know that the PIP form (and the process) is a minefield, but you have nothing to lose by applying - PIP is awarded in addition to ESA. Additionally, should you be assessed as higher rate PIP for either element (daily living or mobility), you would trigger the disability component of ESA, which is worth roughly £60pw - my money more than doubled when I was awarded PIP (I qualify for the higher rate in the daily living component and would have also qualified in mobility but for a directive which was in place when I applied, which I can't now change until my next review in 2020). The best advice I can give you is to look at the benefitsandwork website (you don't need a paid subscription to get enough help to complete the form) and when completing the form, imagine your worst day, really lay it on with a trowel, whilst remembering to use buzz phrases like "severe psychological distress" as these are what the assessors are looking for.
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  #11  
Old 20th August 2018, 01:48
Danica Danica is offline
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Default Re: The Autism, Asperger's and ASD Thread

^ Thanks for replying.

I joined the Benefits and work site last November so I had access to all of the guides when I was filling out my ESA form. Despite worrying about the results, I was placed in the support group again without needing an assessment. I've never really had a problem filling out the forms as I know that you have to describe how you feel on your worst day - it's not having access to an advocate that worries me. If I had to have a face to face assessment, my mother would always be with me, and although she's great at dealing with authority figures, I would rather someone with knowledge of the benefits system be present instead. Also, I do have a tendency to downplay my problems (particularly suicidal thoughts) if my mum is with me.

Since January I've contacted several organisations (including Mind) via email, enquiring about advocates who would be able to attend benefit assessments but every time I've been told that they don't provide them. I'm at a loss now, and that means I can't apply for PIP. I don't have a support/social worker because I have severe trust issues, especially regarding authority figures, and I hate the idea of opening up to an outsider as I'd feel too vulnerable. Over the years not having friends, a job or a social life means that I haven't experienced normal human interaction on an equal footing, so the only people I have contact with apart from my mum are doctors etc. This has affected me adversely, and I'm finding it so hard to deal with.

I know that I'm going to have to get over this if I want an advocate, but it's going to be challenging.
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  #12  
Old 20th August 2018, 10:39
gregarious_introvert gregarious_introvert is offline
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Default Re: The Autism, Asperger's and ASD Thread

^ I don't want to derail this thread, but you can make a case for not having a face-to-face assessment. I've not actually had one, my assessment was done on paper (although there was a submission from my social worker, as I don't have a GP - but in the absence of that, if your GP would be willing to state that a face-to-face interview would be too distressing for you, there should be no need to have one).
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  #13  
Old 20th August 2018, 11:37
firemonkey firemonkey is offline
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Default Re: The Autism, Asperger's and ASD Thread

I am sceptical of the PIP assessments. As with the old DLA it does seem to be about how well you fill in the form or someone does for you rather than necessarily how badly your disability affects you. Struggle to fill in the form/get someone who does a less than good at filling it for you and you are likely to do less well than someone less disabled but who has, or someone else has for them, done a better job with the form filling.

How one creates a system that eliminate such an unreasonable bias is the £64k question.
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  #14  
Old 20th August 2018, 16:27
Dougella Dougella is offline
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Default Re: The Autism, Asperger's and ASD Thread

I think it has to be based on the forms plus the opinion of health professionals/social workers involved and the person's diagnosis and medical history. For some reason in recent years the government seems to have moved in the direction of hardly taking account of health professionals opinions at all which is madness!
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Old 21st August 2018, 21:36
Pink*Lady Pink*Lady is offline
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Default Re: The Autism, Asperger's and ASD Thread

How do I go about getting an assessment? I live in Wales.
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  #16  
Old 22nd August 2018, 08:52
firemonkey firemonkey is offline
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Default Re: The Autism, Asperger's and ASD Thread

Someone said I should check out workbooks for higher functioning autistics (Their words -"There are some good workbooks for higher-functioning autistics (you definitely qualifiy) ) and this was recommended to me.


https://www.amazon.co.uk/dp/18490519..._sw_r_fa_dp_U_

It's aimed at children, which I baulked at, but the person who recommended it said it helped them quite a lot. I have just ordered it.
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Old 22nd August 2018, 15:48
Dougella Dougella is offline
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Default Re: The Autism, Asperger's and ASD Thread

Quote:
Originally Posted by Pink*Lady
How do I go about getting an assessment? I live in Wales.
You would probably need to see a GP and ask to be referred to somewhere that can do an autism assessment. It can be a good idea to take one of the autism questionnaires online, Dr Simon Baron-Cohen has one that is commonly used, and if the result comes out that you could possibly be on the spectrum of have autism traits you can print it and take it with you to discuss with the GP.

Checking out the National Autism Society website is probably a good idea too.
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Old 26th August 2018, 13:52
Woozle Woozle is offline
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Default Re: The Autism, Asperger's and ASD Thread

Quote:
Originally Posted by firemonkey
Someone said I should check out workbooks for higher functioning autistics (Their words -"There are some good workbooks for higher-functioning autistics (you definitely qualifiy) ) and this was recommended to me.


https://www.amazon.co.uk/dp/18490519..._sw_r_fa_dp_U_

It's aimed at children, which I baulked at, but the person who recommended it said it helped them quite a lot. I have just ordered it.
Thanks for the recommendation firemonkey, I will check that out.
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Old 26th August 2018, 23:28
firemonkey firemonkey is offline
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Default Re: The Autism, Asperger's and ASD Thread

Just been looking at the ASD workbook . Looking at things with ASD that apply to me. Talking and being with people 11/13. Sensory issues 3/5 . Flexible thinking 7/12. The most ASD like is being and talking with people which is what I expected. This is the area that probably needs most work . The thing is I'm quite asocial but need to be better at interacting with others when I have to .
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Old 2nd September 2018, 13:24
firemonkey firemonkey is offline
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Default Re: The Autism, Asperger's and ASD Thread

Just been looking at my sister's RAADS-R assessment of me at https://www.aspietests.org/ re x above ASD threshold.

Language 9-4= 2.25
Social relatedness 86-31= 2.77
Sensory/motor 35-16 = 2.19
Circumscribed interests 33-15 = 2.2

The main one is 'Social relatedness'. This ties in with what I know about myself.
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Old 2nd September 2018, 16:24
Pink*Lady Pink*Lady is offline
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Default Re: The Autism, Asperger's and ASD Thread

Quote:
Originally Posted by Dougella
You would probably need to see a GP and ask to be referred to somewhere that can do an autism assessment. It can be a good idea to take one of the autism questionnaires online, Dr Simon Baron-Cohen has one that is commonly used, and if the result comes out that you could possibly be on the spectrum of have autism traits you can print it and take it with you to discuss with the GP.

Checking out the National Autism Society website is probably a good idea too.
Thank you Dougella.
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Old 3rd September 2018, 12:08
Vasco Da Gama Vasco Da Gama is offline
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Default Re: The Autism, Asperger's and ASD Thread

looking back, I'm certain I was very Autistic when I was young, especially around ages 4-9,
to be honest, I'm amazed it wasn't noticed or commented on or anything done about it,
in adult life, I've had people who work with autistic children come up and tell me I had lots of autism traits, but probably what's known as a high-functioning autistic.

just the other day, something I do a lot, but have never thought about was pointed out as classic autistic behaviour.

I'm not sure what a GP diagnosis would do for me, as I've never been on benefits and always held down a job,
but I'd be interested in getting help in coping and adjusting to life with ASD, I might have a look at that book you mentioned firemonkey
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  #23  
Old 7th September 2018, 13:17
Woozle Woozle is offline
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Default Re: The Autism, Asperger's and ASD Thread

Quote:
Originally Posted by firemonkey
Just been looking at my sister's RAADS-R assessment of me at https://www.aspietests.org/ re x above ASD threshold.

Language 9-4= 2.25
Social relatedness 86-31= 2.77
Sensory/motor 35-16 = 2.19
Circumscribed interests 33-15 = 2.2

The main one is 'Social relatedness'. This ties in with what I know about myself.
Here's what I scored for the RAADS-R test. (Thanks firemonkey for the useful link )



Well, my GP appointment where I'll ask for an autism assessment is later today. I'm going to take a printout of the above test, and maybe some other things as well. Wish me luck!
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Old 7th September 2018, 16:20
Vasco Da Gama Vasco Da Gama is offline
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Default Re: The Autism, Asperger's and ASD Thread

damn,..
I got :
197 / 17 / 86 / 56 / 38

have no idea what that means right enough
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  #25  
Old 7th September 2018, 17:07
firemonkey firemonkey is offline
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Default Re: The Autism, Asperger's and ASD Thread

My sister rates me worse for social relatedness than I rate myself but better for language.
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  #26  
Old 7th September 2018, 17:26
firemonkey firemonkey is offline
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Default Re: The Autism, Asperger's and ASD Thread

One thing I found problematic was true now or true only when I was younger vs never true. I find it very difficult to answer when it is sometimes true . It's obviously not 'never true' but then not always true.
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  #27  
Old 14th September 2018, 17:41
firemonkey firemonkey is offline
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Default Re: The Autism, Asperger's and ASD Thread

Gender bias.

https://www.theguardian.com/society/...to-gender-bias
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  #28  
Old 16th September 2018, 19:40
firemonkey firemonkey is offline
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Default Re: The Autism, Asperger's and ASD Thread

I’m not diagnosed by a professional as neurodiverse .Therefore I must be neurotypical. All my symptoms are a delusion. Ha ha ha ha . I’m normal I tell you - NORMAL .
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  #29  
Old 16th September 2018, 19:41
firemonkey firemonkey is offline
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Default Re: The Autism, Asperger's and ASD Thread

Iíve done a lot of thinking. If mental health workers are intelligent, including pdocs , surely they would have picked up on things and requested an assessment if they thought I was a suitable candidate.

Nearest I ever got was a nurse practitioner saying schizotypal might explain things, but later on in the meeting printing out and giving me a page about a local Aspergerís charity. There was no ďIíll recommend you for an assessmentĒ though.

The alternative is the average mental health professional is thicker than pig sh*t ,which isnít very reassuring given these people are charged with helping you .
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Old 19th October 2018, 02:41
Mr. Spaceman Mr. Spaceman is offline
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Default Re: The Autism, Asperger's and ASD Thread

I had my face to face Autism Diagnostic assessment yesterday morning. There were two young female psychologists. One who did the assessment, the other (I was told) was a trainee observing and she sat behind taking notes.

The questions she asked were about my current life - my interests, daily routine etc. I felt that it wasn't just my answers she was interested in but how I answered the questions too. Given my verbal ineptness and inability to relax in these situations I tended to give very short answers. There were many times I felt she was trying to get me to expand my replies, and for example there was one time she mentioned how she had just started to go to the gym and then there was a pause looking at me like she was expecting me to develop a conversation but it just didn't come to me.

There were a few fun practical exercises too. One involved showing me a picture book which seemed to show flying frogs terrorising a town and I had to develop a story based on these pictures. Another she gave me five objects - a toy car, a feather, a cube, a tiny ice cream and I can't remember what else - and I had to make up a story involving these five objects. Given I have virtually no creative ability this is something I struggled with and there was a long silence before I came up with something pretty basic.

Well it was pretty mentally exhausting and she will now write a report based on this meeting and I should know within a few weeks what happens next...
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