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Old 09-08-2008, 11:51 AM   #1
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Adult Aspergers - how to get an assessment

Forgive me if I break the rule that says you need a diagnosis before posting. I'm 54 and have just realized that I may have Aspergers. I want to get an assessment but don't know how.

I rarely seek medical care and have a tendency to let things go for years (high pain tolerance). I recently had a tooth pulled and for the 3rd time had let an infection go until it had eaten away the roots of the tooth and had gone into the jaw bone. The dentist told me the tooth had been infected for years. I hate going to the dentist and don't go regularly. Same with doctors.

I know I am different and if I make an attempt to do something and it doesn't turn out well I often give up. It takes me a long time to work up the courage to try again. It bothers me when I do things that upset people, especially when I don't understand what I've done.

I wrote down the steps I thought I needed to take (to get an assessment) but things aren't working out like I planned. I didn't have a primary care physician so I used the web site for the physicians covered by my husband's medical ins and searched for a female GP who was accepted patients. I called for an appt and the earliest was 7 weeks out. When I went to the appt I asked for a referral to get an assessment for autism and she said that I couldn't have managed so well for this many years if I was autistic and concluded that I was probably suffering from early Alzheimer. I told her that I have had problems since childhood but she would not be dissuaded. She gave me a big lecture about not getting regular care and then gave me a referral to get a brain scan. She told me to come back and see her after it was done - and bring my husband.

I'm afraid to get a brain scan and refuse to let them put chemicals in me, so I waited a few months to take another step. I read a book about Aspergers written by a local psychologist and took a big chance and called her. I got her answering machine. I asked for an appt for an assessment. She called back and left me a message telling me that she didn't do assessments. A few weeks later I contacted another psychologist and waited for an appt. I saw her last week and she was very nice and said that yes, I have a lot of symptoms of Asbergers but that she doesn't do assessments. Wish I would have known that earlier. Do I need a script to read when I call for appointments? And she isn't covered by my insurance. I am currently unemployed, which is another reason that I want a diagnosis. It would explain a lot of my problems in the work place and perhaps I could get some tips on how to get another job. I asked for a referral and she told me to look at the OHSU (Oregon Health and Sciences University) web site and find someone who can do the assessment. Basically, do the work yourself.

I've just spent an hour searching the OHSU site and can't find any reference to getting an assessment. I found a female psychiatrist that is accepting patients but when I called the number to make an appt I got a recorded message about being a crisis line and what to do if it is an emergency and that messages would be returned within 24 hours. I'm not sure that I called the right number but it was beneath the words "for an appointment..." I take things very literally. I can totally relate to Gracie Allen and the way she responded to George's questions because it is exactly the way I think.

I don't trust my primary care physician and she was mean to me so I'll never go back to her. She asked me some questions and when I couldn't answer them the way she wanted she stomped out of the room and paced the hall for a while. When she came back she said that she won't see me alone again, that I have to bring my husband for my next appt. I started crying. I won't involve my husband. I simply won't go back.

Can someone give me some advise or suggestions as to how to get an assessment? My husband is getting Social Security and is working at a low paying job. I'm currently unemployed. We are on a very limited income so I need to work with physicians that are covered by my husband's insurance. And is it true that an assessment can cost as much as $2,500? If it costs that much I may never get one.

Thank you for your thoughts and advise.

 
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Old 09-09-2008, 02:12 AM   #2
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Re: Adult Aspergers - how to get an assessment

Deber, there aren't any rules that I know of about this. Keep on posting! I'm an adult with Aspergers (also age 53, discovered my Aspergers about 3 years ago) and I'm puzzled as to why you want an assessment. I have never had one. I have several adult friends who "know" they have Aspergers, but have never received an assessment (but do seek counseling help). When I realized Aspergers was probably my problem, I called my insurance company and asked for a psychologist who specialized in Aspergers. Went in, talked to her a while, and then asked if she thought Aspergers was my problem. She did. To my knowledge, there isn't really a definitive "test". Usually one is diagnosed by the psychologist observing one's behavior over a period of time.

She helps me with issues that come up in my life. She helped me understand the Aspergers better, and helped me learn strategies to cope. I have gotten progressively more stressed over the years, and have difficulty being around people for any length of time. If I am "too peopled", I'll have a meltdown. It got so bad I had to quit work 10 years ago, then things gradually got even worse due to other problems (mostly allergy/ immune system).

I went to another psychologist for a second opinion, only saw him a few times, but he took my (Aspergers) son as a client.

When we realized I needed to apply for disability, both of the psychologists wrote letters telling SSA why I couldn't work anymore, and were very, very supportive. But no one has ever done any kind of formal "testing" or assessment on me. Why do you want this done? Perhaps just scheduling an appointment with a psychologist trained in Aspergers would be beneficial. There are still many doctors out there who don't have a clue about Aspergers, so be careful who you see. Look for a psychologist, not a psychiatrist. Psychiatrists will give you meds to "make it all better". HA!

Later, after they know you, perhaps they could help you find someone to do an assessment, if you still want one. Even if they don't do assessments, they probably know someone who does. After a while, they would see more clearly the difficulties you may be having working, and provide better advice.

I can relate to all you say. For the past week, I've had an absessed tooth. Am I going to the dentist? No. It even made a hole in the roof of my mouth where it drained. Painful as heck. Hurt all the way up to my eyeball. But it's better, so I don't need to go now.<g> And when doctors don't treat me right, I "fire" them. There are too many doctors in this world to waste my time going to one who doesn't understand my problems. And I cry at the least little conflict. Much better for my mental health to limit my social time.

Mostly, all the "accomodations" I need to work at a job make it impossible for me to work according to SSA. Yes, I worked 23 years, for one company, in different departments. Crying at every one of them, having meltdowns at work, or leaving on my break or lunch to go "riding around" to calm back down. Unable to do large parts of the work I was assigned, and thankfully, I had a clerk to delegate some of the more routine assignments to, who also scheduled and set up my meetings, my calendar, did my filing, etc. So, to work, I need a private office, quiet space, creative non-routine work, my own secretary/clerk, no conflict with fellow employees and supervisors, the freedom to leave anytime I have a meltdown with no questions asked, control over my work and deadlines. Just sit me at a desk and leave me alone and don't talk to me. I'll give you the work when I'm finished. Gosh, how many jobs are like that?

Try checking with the Autism Society of Oregon, they might have a doctors list. They definitely have support groups, and there will be parents attending who know all the doctors who are good, and who to avoid. I hope there's one near you.

 
Old 09-11-2008, 05:48 PM   #3
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Re: Adult Aspergers - how to get an assessment

roses4lace,
Thank you for responding. It is nice to communicate with someone who understands what I'm going through. Thanks for the great suggestion. I contacted the local Autism Society but didn't receive a return call. After searching for what seemed like hours, I found a local Aspergers group and my email was returned promptly. I've been invited to upcoming meetings and my husband has agreed to drive me and attend. I'd been trying to figure things out by myself and am not used to asking others for help. I think the local group will help me a lot.

One reason I want an assessment is to prove to my family that there is a reason that I act the way I do. I've been ostracized and am not invited to any family functions. I try and be nice and don't understand why they don't like me but I think I make them feel uncomfortable because I'm different. They won't believe that I am neurologically different until I can provide a diagnosis by a professional. Not that I want to be around them but it would be nice to clear my name. I'm very sensitive about being rejected or not liked by others.

The other reason that I want a diagnosis is that I want to go back to school. I dropped out in 10th grade because I couldn't find my classrooms and some of the time I couldn't even find my locker. I have spatial awareness and problems with directions: right, left, up, down, etc. I also have memory issues and when I stress out my mind totally blanks. Early on I learned to write detailed notes so that I could look at a schedule, map, directions, etc. and figure out where I should be at what time but in 10th grade I somehow lost my notebook and was totally lost. The office wouldn't provide me with a copy of my schedule - they thought I was lying when I told them that I didn't know what class to attend or what room it was in. I couldn't remember facts and failed tests. There is no way that I can go back to school without accommodations and I can't get an accommodation with a diagnosis.

I was forced to quit my last job. I had been there for 6 years but left after I got a new manager. My new manager said I didn't fit in, true, but I was doing my job. He couldn't figure out a way to legally fire me so he, along with some of my coworkers bullied me into quitting. I didn't know that I could report their activity to the union or HR dept. I took their insults and constant suggestions that I didn't belong and should leave as truths. I've been unemployed for almost 3 years, except for a couple of short-term temporary jobs. I'm having trouble finding another job.

Last week I saw a career counselor and she said that my only hope of getting a job is to get retrained. I'm terrified of taking a class at a community college. I know I won't be able to pass tests without an accommodation. My husband earned too much this year and his SS benefits stopped. He has to wait until he turns 66 before they will start again. Our savings is going down quickly and I need to start working as soon as possible. I'm not sure what to do.

I'm sorry that you weren't able to work but glad that you got your SSI on the first try. My daughter is bi-polar and is on SSI but it took her years before she got benefits and the amount she receives each month is so small that she has to depend on her boyfriend to support her.

Try and get your tooth fixed, or pulled, or whatever. I feel a lot better now that I've gotten two abscessed teeth out of my mouth. I can't chew properly but that is another story.

Thanks again for the support and for sharing your story.

 
Old 09-11-2008, 11:53 PM   #4
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Re: Adult Aspergers - how to get an assessment

Deber, a lot of what you are saying sounds a lot like me. My memory has been bad all my life. The only way I could pass tests was to study the night before, and in the lunchroom that morning. I could barely retain it long enough to take the test, and don't think of asking me the question the next day!

I was much more sensitive in the past about being disparaged. One thing that helped me was taking the MBTI test. I discovered my type was INTJ, a type with very few members No wonder I felt so odd all my life, I was truly out of step with at least 90% of the population because of that, and with the Aspergers on top of it, I always felt like a true oddball. I studied the MBTI for a while and once I was familiar with it, I better understood the fact that people really are different, but it doesn't mean that I am wrong. It may mean that some types will never be able to understand me, though, nor I them. Some types can relate to 70-80% of the population, and consider themselves "normal". And naturally, they consider the other 20-30% of us abnormal. The "majority" tends to use the differences in type to criticize and put down the "minority". I remember one parent in a support group going on and on about how we were so different, and how she just didn't understand us, we did things so strangely. I went up to her afterwards and told her that her behavior was just as bizarre to us as ours was to hers, and that just because we were different, who was to say our way was any more wrong than her way. Not the way to make friends, but she was being very rude in my opinion. She has avoided me ever since. I truly feel sorry for her child with Aspergers.

I'm glad to hear you found a support group, they can be life savers. Just be aware that sometimes there are parents there who are at their wits end trying to cope with children they don't understand, and school personnel who seem to be totally clueless, and they bring that frustration to the group in hopes of getting some good advice. I found that my presence was always helpful. Many times I could hear a story of grief, and immediately recognize what the child needed but no one recognized, and could pass that information along to the parents, in concrete ways they could actually use to help the situation.

One clarification - my son got SSI on the first try, then it took us from 2005 until Dec 2007 to get SSDI for me, and DAC for him (from my work record).

I forgot to mention a very important option that might be helpful to you. It helped my son very much - he really wanted to work and went to our state Department of Rehabilitation Services (Voc Rehab). They did extensive tests on him to see what he was qualified for and what problems he had. It was all free, and they would help him get a job. And provide free training, even college courses. But his problems were so severe that the job interview they took him to, they knew immediately the job wouldn't fit.

When they were reading his results from the tests, I was crying, because they were describing my exact problems. One part listed the problems he would have on the job - I had already experienced every single problem. And they listed the accomodations he would need to request - I had received all the accomodations without them ever being called that. They don't give you a diagnosis, just a lot of tests. Some of the areas tested were processing speed, stress level, social skills and ability to appropriately interact with others, symptoms of depression, coping skills, written language, reasoning, critical thinking. They put all the results together in a well organized report. It will provide a much more clear picture of the problem than a two word diagnosis could ever convey. And the best part of all - they will help you find a job and support you in seeking the accomodations that you need!

When the lawyer saw that he had reports and tests from Voc Rehab, they were delighted, said that was one of the best documentations he could possibly have for a disability application.

So I highly recommend you seek out your local Voc Rehab group (it may go under a different name in your state). It is very likely you would get both the testing and job assistance you seek, and if all else fails, use it as supporting evidence to apply for SSI, or SSDI if you have enough work credits.

 
Old 09-15-2008, 04:45 PM   #5
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Re: Adult Aspergers - how to get an assessment

roses4lace,
I am an INTJ also. Cool! I worked for a couple of large companies that had all their staff take the MBTI. I can't remember what INTJ means but I was the only one in my group that came out with that designation. Goggle is my friend so I can look it up anytime I want. I had the letters written down in a notebook that I keep so I know that is what I tested as. I keep lots of notebooks full of facts - all over the place - and misplace them a lot and start new notebooks. Drives my husband crazy.

I took some steps today toward getting a job. I got up early and used public transportation to go to the closest Oregon employment office. We didn't have bus service in my home town so this is a new experience for me. I caught my first bus at 7:10 AM to get to a 9 AM meeting. I used to make myself physically sick trying to figure out where to get off the bus and how to make transfers, etc. but I have learned to ask the bus driver to help me get off at the right stop and to give me other basic directions, like where to make a transfer. The last bus driver (on my way to the employment office) was very friendly and was talking to other riders and forgot where I wanted to get off. I couldn't read the street signs but I was watching the time and noticed that it was past the time when I should have gotten off. It turned out okay and I only had to walk a short distance but I'm proud of the fact that I spoke up. A couple of months ago I would have stayed on the bus and ridden till the end of the route and missed my appt.

The employment office didn't really help me. They assigned me a counselor but she is swamped and I have to wait until she calls me to set up an appt to meet her. I was told that it may take a week for her to call me. I may be eligible for a training program where they offer partial payment for short-term retraining courses but I was told that I have to find the course and then fill out the form requesting a grant to pay for part of it. I wish I could have talked with someone today. I was overwhelmed. I don't know what I want to train for, I don't know how to find the course and I'm afraid that I won't pass the course and will have to pay the entire cost. I left after trying unsuccessfully to take a timed typing test. They use Mavis Beacon as the testing software and the computer keyboard was too high and the monitor was the wrong height. I was physically uncomfortable and I couldn't see correctly out of my bi-focal glasses. The software screen was too busy for me. The screen showed the line I was supposed to type and the letters I typed directly beneath it. Both of the lines moved as I typed and the screen was slow and didn't change in real time. I found myself typing slower so that the screen could catch up. I got confused watching the letters move and lost focus. In addition to the busy screen, I got distracted because I love to listen to multiple conversations and there was a lot to listen to. Then I had to plug my ears during a test because an electrician was working with a drill and a portable vacuum. Too much for me to handle. I normally type 72 - 75 but couldn't get above 65 on the practice tests so I left without doing the formal test.

I re-read your post and realized that I don't know what the acronyms SSI, SSDI and DAC mean. I'll look them up later to better understand what you have written. My BP daughter gets what she calls SSI, which she explained as a small amount of money from Social Security each month as well as free medical services.

The AS group I found isn't as great as I hoped it would be. I went to a meeting last night (Sunday). I arrived crying because the trip through heavy traffic was very traumatic for me. My husband drove me. I feel safer using public transportation but public transportation runs sparingly on Sundays so it would have taken me 3 hours to get to the meeting and at least that long to get back to our apartment. I learned some good information from the guest speakers but they didn't get to talk much. The group leader can't stop talking. He would let the guest speakers talk for a couple of minutes, sometimes less, and then he would make a comment or a point and keep talking - he can't shut up. He would talk for up to 15 minutes and then apologize for talking so much, but 2 minutes later he would do it again, over and over. During the break a couple of long-term members took me aside and said that the leader drives them crazy because he won't let anyone else talk and that I may not want to join this group. They said they were only attending to hear the guest speakers. I was told that there is a better group in another part of town. I neglected to write down the information and I can't remember it! I am going to have to go back to find out where the other group meets, the info isn't on the web site. The only contact on the web site is the group leader. It will be a waste of my time to sit for 3 hours, yes, the meeting is that long, and listen to this guy. He is brilliant but grrrr. And my husband has to drive me so he was planning on attending the meetings with me. He is NT and absolutely will not put up with someone who won't let others talk.

Thank you for the tip about Voc Rehab. I don't look forward to the tests but welcome the assistance. And it would be wonderful if they paid for the testing. I called and asked if they would test me and was told that it depends upon what my counselor recommends. I asked how I could get assigned a counselor and was told to come to an orientation meeting to learn more. The orientation is next week. After the orientation it can take up to 5 weeks to get an appt with a counselor. I called another office and they are sending me an information packet and after I read it and fill out some forms I can register to attend an orientation at their branch. I'll have to decide which office to work with. I can't work with two at the same time. Wish I would have started this process sooner. Cross your fingers that I get a counselor that will figure out a way for me to get tested for free.

I'm trying really hard to be patient. I would love to be able to get instant answers but that isn't the way things usually work. It must have been difficult for you to wait for 2 years to get benefits.

 
Old 09-15-2008, 09:12 PM   #6
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Re: Adult Aspergers - how to get an assessment

No instant answers, but look what you've done - you've reached out for help, one of the hardest things for most people to do. You've gone to a support group full of total strangers, looking for help. You are making decisions that are good for you. Great progress, I'd say! Sounds like that typing test was a visual overload. The moving line would have driven me nuts.

I'm glad to hear you have choices in your meetings. We have two members who like to hear themselves talk. One talks at you, not with you, and really stresses me out, so I avoid him whenever possible. He is working with a counselor to help with his constant monologuing, but still hasn't overcome it fully. Much better than two years ago, though. Guess you'll have to tough it out one more meeting, to get the information again. I've found it to be a good idea to get the phone number or email from at least one other person at any meeting I attend, preferably someone who has attended for a while.

Yes, the bureaucracy is slow, and patience is very important. Back in 2005 voc rehab told my son he would receive driving lessons. He was finally scheduled earlier this year.

All these acronyms SSI, SSDI and DAC are basically different forms of benefits that Social Security pays. Each one has different rules for qualifying, and provide different benefits, but all have the same requirement for well documented medical evidence. If you ever decide to apply for disability, all your efforts trying to find a job in spite of the problems you experience will be viewed in a very positive light.

 
Old 10-13-2008, 10:22 PM   #7
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Re: Adult Aspergers - how to get an assessment

Hi dreber,
I have 3 immediate family members and several extended family members (grandparent & uncles) with Asperger's. I have found that it is a hereditary disorder. I do hope you get the help you need. As far as "diagnosis", my son was diagnosed by having 9 character traits of 13. There was no "test". I consider Asperger's more of a social disorder than "autism" but that is my opinion. People with Asperger's have great talents, it's just difficult finding the talent due to being in a shell.

I wish you luck in getting the help. My 12 yr son is currently taking an anxiety medication, along with my 18 yr daughter to help with some of the symptoms.
My husband does not but he has his own way of dealing with the disorder.

It can be very frustrating on the part of the family members, I was very frustrated with my son at first until I realized something was not right. I would ask him a question and he would look me straight in the face and not answer me-he would then get in trouble because we are both very bullheaded. The only way I have been able to understand Asperger's disorder to read everything I can get my hands on about it.

Good luck!

 
Old 10-16-2008, 06:36 AM   #8
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Re: Adult Aspergers - how to get an assessment

Thanks for your response, Warpig. I have learned so much about Aspergers lately and after a couple of meetings with a psychologist, I feel like I'm going to get a diagnosis within the next couple of months.

I love hearing and reading about people with Aspergers. We all have a core of sameness but beyond that, we are unique individuals.

I totally understand about the situations you had with your son. My dad used to get equally frustrated with me because I couldn't respond quickly to questions and if I got upset, I couldn't speak at all. I would just stand there and stare at him. I still do that as an adult and it causes problems in the work place.

It was hard for me to wait but I finally got referred to a couple of psychologists that know about Aspergers. Since my first post I have been to three Aspergers meetings, have seen one psychologist twice and have an appt to see a second psychologist in a couple of weeks. My husband has insurance through his job but I have not been able to find any psychologists under his plan that know about Aspergers. Since the psychologists I am seeing are not part of the insurance plan, we have to pay at least 70% of the cost of services - up front. Ouch. Good thing they take Visa.

We can't afford to have the psychologists do an actual assessment because it can cost between $2,500 - $4,000 and are hoping that Voc Rehab will provide that service.

Getting a diagnosis will answer so many questions for me. I've never known what was the matter with me and tried to explain myself to others by called my problems "undiagnosed learning disabilities".

When I was younger I could job hop but now I am unable to find a job. I have an appt with Vocational Rehabilitation in Nov and now that I have a psychologist to privide case notes, I hope and pray that Voc Rehab will be able to help me find a job that I can be successful in. Or help me get job training. I would love to take a class and be successful in taking a test. That would be a dream come true.

 
Old 04-14-2010, 08:56 PM   #9
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Re: Adult Aspergers - how to get an assessment

There is a book that all of you need to order and read cover to cover. The Author's name is Donna Williams. The title of her book is Autism: An Inside Out Approach. It is a bible for understanding the different types of Autism and Aspergers that are flying around out there. She puts them all in order, explains how many are misdiagnosed and why. The one thing that she did for me was she spoke for me and what I was going through throughout my early childhood and adolescents, which I could not recall, or could not put into words because of my memory. It was sometimes emotional, because I had realized what all I had suffered through that I had not consciously been aware of all of these years. Order this book, and if you are not satisfied, write me back. I'll make it up to you!!!!!!!

Quixote23

 
Old 11-19-2010, 10:50 PM   #10
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Re: Adult Aspergers - how to get an assessment

Quote:
Originally Posted by Quixote23 View Post
There is a book that all of you need to order and read cover to cover. The Author's name is Donna Williams. The title of her book is Autism: An Inside Out Approach. It is a bible for understanding the different types of Autism and Aspergers that are flying around out there. She puts them all in order, explains how many are misdiagnosed and why. The one thing that she did for me was she spoke for me and what I was going through throughout my early childhood and adolescents, which I could not recall, or could not put into words because of my memory. It was sometimes emotional, because I had realized what all I had suffered through that I had not consciously been aware of all of these years. Order this book, and if you are not satisfied, write me back. I'll make it up to you!!!!!!!

Quixote23

 
Old 11-22-2010, 01:37 PM   #11
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Re: Adult Aspergers - how to get an assessment

I neglected to post that I was given an official diagnosis of High-functioning Autism and Asperger's Syndrome in November 2008. In the summer of 2008 I registered with Vocational Rehabilitation and it took almost 3 months before I was able to meet with my assigned counselor. Vocational Rehabilitation did pay for an assessment that included several visits in November and December 2008. Because of the holidays the process took a long time. The testing was exhausting and getting to/from the appointments caused me several anxiety attacks. My husband's insurance will only pay for visits to psychologists that are members of his HMO and I was unable to find any that know about adults with autism. Seeing a psychologist (in his HMO) would cost a co-pay amount plus a percentage, approximately $60 per visit, which is beyond our means because I am not working. So, I have a diagnosis but can't afford to see anyone and can't find any psychologists that know about adults with autism.
I use libraries and have read all the books I can find about autism, including those written by persons on the spectrum. All have given me insight and a few have detailed experiences that I have had. I read the books by Donna Williamson and they didn't touch me the same way as zero54.
I no longer go to asperger group meetings. One of the groups was disbanded and the remaining group is too structured for me and it is very hard for me to get to/from. I get my best support from wrongplanet.net.
In October 2010 I attended a conference for adults with autism by the Autism Society and the most important thing I learned is that autism is a spectrum and I quote "If you have met one person with autism, you have met ONE person with autism." What that means is that all of us on the spectrum are different: our abilities, our symptoms, fears, phobias, etc.

 
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