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Should I get a diagnosis?
Poll ended at 23 Oct 2014, 9:50 pm
Yes 62%  62%  [ 18 ]
No 38%  38%  [ 11 ]
Total votes : 29

RosieM
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23 Sep 2014, 9:50 pm

My entire life I have known that I was different than most. I perceived this difference as something "wrong" with me, mostly because others pointed out the difference in disappointment. As I got older and became more educated, I learned about ADHD and thought I must have that because I suffer from many of the listed symptoms. However, because of my mother's unbelievable support I passed high school and went to college. I struggled immensely in college and coped through substance abuse. I met my boyfriend 4+ years ago and he became my unbelievable support system. I returned to college in 2012 to get my master's degree to try and get a better job and succeeded in both. Still, these random symptoms continue to creep up and plague me more than most other people.

My symptoms that were holding me back the most included but where not limited to: chronic lateness and forgetfulness, poor organization, procrastination, and keeping up with my personal belongings. No amount of using a planner helped, threy always got lost. People would say, just make a "concious" effort to do whatever it was I wasn't doing correctly, and I would think, my conscious doesn't work like that. No matter how I tried to explain no one could understand fully and I was often accused of being lazy and not caring. I always assumed I would grow out of it, but after 27 years, and a little prodding from friends and family, I decided I'd had enough of being asked what was wrong with me and I saw a psychologist.

After an hour and 1/2 of me talking/crying about how I feel about having these symptoms affect me so heavily she told me she thought I have a social learning disability and told me it was on the spectrum of aspergers. This hit me so strangely, not because of aspergers, I could care less about the label, but my social abilities are the only real strengths I have. (After I got home I researched and found that some people with this are very social like myself.) So she asked if I could come back for more tests to get a true diagnosis.

So is it worth it at my age? These tests are not covered by insurance and will run around $900+. Currently, life is pretty good for me and I don't expect it to be perfect. Is there treatment for this? Or, will I be treating my symptoms? What I was hoping for was some explanation for my problems and therefore maybe a little sympathy from those around me. But, what I really need is treatment and if the treatment is take lessons in oranization and learn memory techniques and such, then I'd rather just skip the tests and do that do. Those are the skills that I am lacking and feel I need special help in to actually retain it. What do you all think?

Based on my minimal research done my my iPad this afternoon, if I do have a social learning disability I believe it is a non-verbal learning disability though I am social and feel I understand social cues and body language. I will now bore you with describing myself and you can tell me what you think. I understand that only a true diagnosis will tell so that's going in the "pros column" for having the tests done.

Excessive talker
Great vocabulary and verbal expression
Chronic lateness
Chronic forgetfulness
Impulsive
Trouble planning ahead
Trouble setting priorities
Low self esteem
Procrastinator extraordinaire
Targeted as gifted at young age, but poor organization and procrastination prevailed in jr high/ high school
Share too much info with strangers
Incapable of deception
Overly loud without realizing it
Overly sympathetic and empathetic
Have been perceived many times as being inconsiderate and am always blindsided by this accusation, and hav no idea I have hurt the other person in any way
In conflict, my tone of voice becomes what has been referred to as monotone
Anxiety
Hard working
Persistent
Honest
Goal oriented
Easily distracted
When something has my interest, it is ALL I can think about, day in, day out. I obsess over it for days, weeks, months and then I find something else that interests me and I obsess over it. This is also a main source of my distractions. I've often referred to myself as a hobbiest because of my ability to love something so much and then move on to something else that interests me with the same intensity as the first hobby.
These things I obsess over are all I can talk about when I'm with friends. My friends are often quiet and shy and have a hard time carrying conversation so they are happy to listen to me talk about whatever. But, when I'm with a stranger or not so close aquantaince they don't want to hear about how I watch some documentary for the 100th time, or about how obsessed I'm am with rescuing homeless animals. Small talk is hard because I want to talk about whatever it's I'm into at the moment. Who cares about the weather?!
I am great with humor and sarcasm
The only sensory things I can think of are soda, I LOVE the feel of drinking the carbonation, I am a chronic hair twirler and I love feeling my hair in my fingers, and I have always had a pet and I could pet it for hours.
I don't love looking at people in the eyes but I've learned to do it enough, doesn't even bother me now.
Poor math skills
Friendly to the point where I feel that every person I meet needs to be treated like my best friend
I have made many friends in my life, 4 I would call "best" friends, but I have always kept a loose association with many acquaintances. I think this comes from my feeling that everyone should be a friend. I have a hard time letting go of people I've met only a few times. I try to meet the demands of so many friends but it stresses me out.

And lastly, I have a repetitive behavior that has appeared since I was at least 12-13, where I rub my hands together like I'm cold then I place them flat in front of my face and shake my head. Yes, you read that right... (That's sarcasm 😉) Nowadays, this is only done at home or in the car before work, rarely in public.

Thank you to those that read and respond. Today has been an emotional day for me.

Rosie



Last edited by RosieM on 24 Sep 2014, 9:57 pm, edited 4 times in total.

little_blue_jay
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23 Sep 2014, 10:15 pm

Well it is really up to you, me I'm 37 and I'm going for my diagnosis but I'm in Canada and an assessment, if I can get in with this particular specialist who diagnoses adults, would be covered by OHIP but, for you paying $900+, that is alot of money. If money were no object and it was me I'd go for it but only you know what your finances are! :)


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Cash__
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23 Sep 2014, 10:30 pm

I voted no. I was diagnosed as an adult and it really has had no effect on me either positive or negative.



calstar2
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23 Sep 2014, 10:33 pm

Imo, only of use to get diagnosed if you need benefits/accommodations/something else that requires a diagnosis.



RosieM
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23 Sep 2014, 10:40 pm

little_blue_jay wrote:
Well it is really up to you, me I'm 37 and I'm going for my diagnosis but I'm in Canada and an assessment, if I can get in with this particular specialist who diagnoses adults, would be covered by OHIP but, for you paying $900+, that is alot of money. If money were no object and it was me I'd go for it but only you know what your finances are! :)


It's not that money is no object, it is, but I could save for it and it would take me 6 months or so to get it all done. But, I'm also saving to pay off student loans, car payment, house payment and future wedding. So I have plenty else the money could go to. But, if my life would benefit from the diagnosis then I want it.



calstar2
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23 Sep 2014, 10:45 pm

Also, I think you could probably get a consultation before deciding to go forward with a full evaluation. A specialist would no doubt have initial opinions on whether or not you'd possibly be on the spectrum before paying 1-2k for a diagnosis. In the US here and it cost roughly 2.1k for my evaluation.



RosieM
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23 Sep 2014, 10:49 pm

calstar2 wrote:
Also, I think you could probably get a consultation before deciding to go forward with a full evaluation. A specialist would no doubt have initial opinions on whether or not you'd possibly be on the spectrum before paying 1-2k for a diagnosis. In the US here and it cost roughly 2.1k for my evaluation.


I believe that's what I had today, a consultation.



calstar2
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23 Sep 2014, 10:55 pm

RosieM wrote:
calstar2 wrote:
Also, I think you could probably get a consultation before deciding to go forward with a full evaluation. A specialist would no doubt have initial opinions on whether or not you'd possibly be on the spectrum before paying 1-2k for a diagnosis. In the US here and it cost roughly 2.1k for my evaluation.


I believe that's what I had today, a consultation.


Oh, slightly embarrassed now to admit that I didn't read that portion. I think you should probably write down a list of pros and cons for being evaluated and go from there. A lot of the pros would likely come from personal feelings/answers.



RosieM
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23 Sep 2014, 10:57 pm

calstar2 wrote:
RosieM wrote:
calstar2 wrote:
Also, I think you could probably get a consultation before deciding to go forward with a full evaluation. A specialist would no doubt have initial opinions on whether or not you'd possibly be on the spectrum before paying 1-2k for a diagnosis. In the US here and it cost roughly 2.1k for my evaluation.


I believe that's what I had today, a consultation.


Oh, slightly embarrassed now to admit that I didn't read that portion. I think you should probably write down a list of pros and cons for being evaluated and go from there. A lot of the pros would likely come from personal feelings/answers.


Thanks, good idea. And sorry for the super long entry. I would have scanned that as well.



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23 Sep 2014, 11:56 pm

It's really up to you. I will say this though; getting diagnosed was one of the best decisions I ever made. Because of it, I, my family and friends all understand me and why I do what I do a lot better, I'm no longer criticized for just being weird or accused of "not being sure because I don't have a diagnosis", and I have an explanation for my behaviour which previously seemed so odd and out of place. I was also able to use my diagnosis to get accommodations for classes at school (relatively minor, just extra time for exams, but it makes a big difference), and I was also able to join a group that focuses on improving the social skills of autistic adults, so I'll have a more "normal" social skillset for whenever I feel like faking NT. I'm also getting therapy for my co-morbid anxiety, and am able to put it into context with the autism diagnosis. Without it, determining my anxiety symptoms and why they occur would be much harder. Overall, I felt like my life improved dramatically after I got diagnosed, but $900 is a lot of money. The money was the reason I remained undiagnosed for so long (2 years). How in the future is your future wedding? is it a hypothetical affair set at some undetermined date with an undetermined man, or are you engaged and getting married in six months? Perhaps you could pull a little funding from there to help with the costs, if you have time to build it back up again before the actual wedding. Good luck Rosie!


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izzeme
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24 Sep 2014, 4:14 am

i'd say no, you seem to be having a pretty decent grasp on life, at your age a diagnosis doesn't really add a lot.
while in school/college, having a diagnosis might get you some extra help (might, mine didn't help diddlysquad since the teachers didn't beleve my doctors...), but after a certain point in life, it is nothing more then just knowing for yourself that you were right, a final piece for the puzzle.
now, i'm not saying that it is not worth it to have that final piece, but i dont think it's worth $900



zer0netgain
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24 Sep 2014, 4:18 am

calstar2 wrote:
Imo, only of use to get diagnosed if you need benefits/accommodations/something else that requires a diagnosis.


+1

However, that said, if you can keep the Dx a secret (not easily accessed or public record once it is given), it might be good to go and get it and the YOU choose if and when to disclose it.

Getting it when you NEED it can be harder than you think. Having it but being able to choose when to use it is the best option.



RosieM
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24 Sep 2014, 7:31 am

StarTrekker wrote:
It's really up to you. I will say this though; getting diagnosed was one of the best decisions I ever made. Because of it, I, my family and friends all understand me and why I do what I do a lot better, I'm no longer criticized for just being weird or accused of "not being sure because I don't have a diagnosis", and I have an explanation for my behaviour which previously seemed so odd and out of place. I was also able to use my diagnosis to get accommodations for classes at school (relatively minor, just extra time for exams, but it makes a big difference), and I was also able to join a group that focuses on improving the social skills of autistic adults, so I'll have a more "normal" social skillset for whenever I feel like faking NT. I'm also getting therapy for my co-morbid anxiety, and am able to put it into context with the autism diagnosis. Without it, determining my anxiety symptoms and why they occur would be much harder. Overall, I felt like my life improved dramatically after I got diagnosed, but $900 is a lot of money. The money was the reason I remained undiagnosed for so long (2 years). How in the future is your future wedding? is it a hypothetical affair set at some undetermined date with an undetermined man, or are you engaged and getting married in six months? Perhaps you could pull a little funding from there to help with the costs, if you have time to build it back up again before the actual wedding. Good luck Rosie!


And, that's why I would like, some understanding from my family about why I do the same things over and over and I can't fix the problem that causes it. My wedding date is March 18, 2016. I don't say fiancé yet because I'm expecting my official proposal this winter. But, since I know it's coming, I'm saving now. Based on what I make and my expenses I can budget $150 a month for either wedding or diagnosis. I'm wondering if maybe I should look at some other psychologists who can do it less expensive. Of course I already paid $194 for a consultation with this woman. I do need better methods of coping with the anxiety. That's where substance use comes in for me. I know this is not good and is a change I need to make. But up to this point I felt that the anxiety came from the unstableness in my life and from the fear of forgetting something important and disappointing someone I care about. That's what I can't handle. I'm in terrible anguish if I feel like someone doesn't like and that it is my fault that they don't like me. But now my life is stable, and feeling like "okay I'm a rare case of NLVD and that's why I can't remember, even if it's the most important thing in the world". And it isn't a lack of caring or trying. And just myself knowing this might help cope with the anxiety/fear. Thank you for your advice, I truly appreciate it!



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24 Sep 2014, 10:54 am

If there is a tangible benefit (workplace or governmental) to having a diagnosis as an adult, then seek one. But, if there isn't, then don't. Either way, the University of Cambridge Autism Research Centre screening tests are a good way to test yourself and see if a diagnosis is likely.


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RosieM
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24 Sep 2014, 11:54 am

AspieUtah wrote:
If there is a tangible benefit (workplace or governmental) to having a diagnosis as an adult, then seek one. But, if there isn't, then don't. Either way, the University of Cambridge Autism Research Centre screening tests are a good way to test yourself and see if a diagnosis is likely.


I live in a university town and I never thought of reaching out to the medical center and seeing what they can offer. I'll look into it! Also, I have a Cherokee nation card and my mother said they have a mental health facility close by that can test also. Hopefully that's more affordable.

Anyone have suggestions for improving the following:
Organization
Procrastination
Anxiety
Forgetfulness
Keeping up with personal belongings.

I appreciate any help!



AspieUtah
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24 Sep 2014, 12:05 pm

RosieM wrote:
AspieUtah wrote:
If there is a tangible benefit (workplace or governmental) to having a diagnosis as an adult, then seek one. But, if there isn't, then don't. Either way, the University of Cambridge Autism Research Centre screening tests are a good way to test yourself and see if a diagnosis is likely.

I live in a university town and I never thought of reaching out to the medical center and seeing what they can offer. I'll look into it...!

I might have written my comment incorrectly. I meant to say that as an adult, there is little or no reason to get a diagnosis unless you are seeking some kind of benefit like U.S. Social Security disability assistance or workplace supports. If you are seeking such assistance, then a diagnosis would help you. But, if you aren't, a diagnosis would give you personal knowledge (and some bragging rights, too -- hehe), but, in some cases, might actually cause you some risk. You can get the peace of mind of a probable diagnosis with one or more of the Cambridge screening tests without the risks.

Either way, I support you.


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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)