going for diagnosis, (self-diagnosed)

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ninjaman
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11 Jun 2016, 9:47 am

Hello,

I have been on here a few times over the years. I have had problems with the usual since childhood. I have noticed these things since a young age. Started medication and looking for an answer since I was 17. I am now 36. I have been self-diagnosed as this is the closest I can come to an answer.
Recently I have been given the opportunity to get a diagnosis. I have been sent a bunch of questionairs that I have to fill out. Some of them have to be filled out by a relative/close friend that has known me since birth. These things include my behaviour when I was very young. Unfortunately my dad can't remember much of what went on last week let alone 30 years ago. For reasons I do not want to go into, I do not want to include my mum in this. I have looked at the questions and can not answer them myself because I do not know what I was like at that young age (toddler). The questions that I can answer, have given me an Aspie rating. I am worried about going along to this interview, I don't know what I would do if I am told I don't have Aspergers. I am not hoping that I do have it, but I don't know what I would do if I don't.
Should I cancel, this is something I have thought about. The time it would take could be spent helping someone else. I don't know what would come of being diagnosed with Aspergers, I certainly wouldn't tell an employer/potential employer. I have wanted this opportunity for some time now, though I am worried because I do not believe there are "Experts". I have met a number of people who claim to be "Experts", honestly, some of their behaviour in giving a diagnosis is ridiculous. I went to my local doctors office for an interview, it lasted ten minutes. There was this uni student, early twenties, "Jacob". He was sat there with the DSM VIVX thing open in his lap. He asked me why I thought I had Aspergers, I told him and he said that the problems I have mentioned where not written in the DSM so I cant have Aspergers. That was a complete waste of time.
Any advice on what I should do would help.

Many thanks

:D :D :D



AspieUtah
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11 Jun 2016, 10:03 am

I would pursue a diagnosis if I were you. If Jacob is your diagnostician, you should ask for another diagnostician. he shouldn't be diagnosing you based on a 10-minute chat.

Beyond that, I know firsthand how diagnosticians usually find autistic comorbids even if they don't see enough behaviors and characteristics for a diagnosis of autism. In these cases, some diagnosticians might diagnose Broader Autism Phenotype (BAP). Don't let your experience with Jacob color your perception of all diagnosticians.

Also, you might want to write a list of your own recognized behaviors, characteristics and any comborbids (like diagnoses of anxiety, obsessive compulsions and depression that you might already have). Include as many details as you believe are helpful to your claim. In other words, this is the time when you and your willing family members need to be the best advocates for you that you and they can be. Argue your beliefs that you have autism. Convince the diagnositician by sharing your list of behaviors, characteristics and comborbids. At the very least, sharing your list will spark additional discussions about yourself that the diagnosticians might forget to ask.

Meanwile, relax as best you can and focus on your goal. Good luck and stay in touch if you have questions.


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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)


crazybunnylady
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11 Jun 2016, 10:08 am

I'm going for my assessment next week and have had my mum complete the questionnaire. However I know it's quite common for people to either not be in contact with parents, parents are deceased etc.

In the letter from the psychologist I'm seeing they explain that it is preferable to have input from family but if it's not possible they will still go ahead with the assessment. They might not be quite as confident in any diagnosis but they will still give one with the information they can get from the person being assessed, if it applies.

Maybe have a think about some of your earliest memories and write any relevant ones down to take with you. Also if you have any photos from a young age these could help.

I would give the assessment a go regardless. I hope it goes well for you, let us know how you get on :)


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You are very likely neurodiverse (Aspie)

Diagnosed with Asperger Syndrome 15/06/2016


ArielsSong
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11 Jun 2016, 1:06 pm

crazybunnylady wrote:
I'm going for my assessment next week and have had my mum complete the questionnaire. However I know it's quite common for people to either not be in contact with parents, parents are deceased etc.

In the letter from the psychologist I'm seeing they explain that it is preferable to have input from family but if it's not possible they will still go ahead with the assessment. They might not be quite as confident in any diagnosis but they will still give one with the information they can get from the person being assessed, if it applies.

Maybe have a think about some of your earliest memories and write any relevant ones down to take with you. Also if you have any photos from a young age these could help.

I would give the assessment a go regardless. I hope it goes well for you, let us know how you get on :)


Out of interest, how can photographs help?

OP, it sounds like you're going through the doubt and panic of having found something that describes you, and then knowing that you could possibly be told that you're wrong, which will leave you questioning all over again why you're so 'weird'. I think it's normal to go through that. I certainly do. My diagnosis assessment is in early August and I so frequently drift back to "I'm wasting time. They're going to find nothing wrong", but then I think sensibly or I come and browse a few threads on here and I know I'm doing the right thing going, because I'm so confident that this is the closest thing I'll ever find to a reason for the person I am.

I also firmly believe, from all of my research, that someone doing the diagnosis will see things that you (and others) might not. They'll notice things you don't even realise are happening. I never understood why I couldn't make or keep friends, because I was so convinced that I just came across as 'a bit quiet', but the more I learn the more I begin to realise that I'm probably giving off a lot of signs that I don't realise at all. Other people notice them, but I never have. Heck, even eye contact which I thought I was good at faking right up until a few months ago, I've since realised I'm useless at. I'm now aware that I do hold eye contact for a short while, but where I thought I continued to hold appropriate eye contact I actually often talk to someone whilst looking in a different direction! You have to trust the experts to notice.

And, if they determine that you don't have autism, at least you can move on from that particular path and continue your self-discovery elsewhere.



AspieUtah
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11 Jun 2016, 3:13 pm

ArielsSong wrote:
Out of interest, how can photographs help?...

If the photographs include images of the individual as a child surrounded by such things as carefully stacked books; lined-up toys by size, shape or color; or an extensive model-train set ... the images would go a long way to showing obsessions, routines and repetitive behaviors in the individual's early developmental period. These are some of the most important pieces of evidence that an autism diagnosis could hope for.


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ArielsSong
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11 Jun 2016, 3:18 pm

AspieUtah wrote:
ArielsSong wrote:
Out of interest, how can photographs help?...

If the photographs include images of the individual as a child surrounded by such things as carefully stacked books; lined-up toys by size, shape or color; or an extensive model-train set ... the images would go a long way to showing obsessions, routines and repetitive behaviors in the individual's early developmental period. These are some of the most important pieces of evidence that an autism diagnosis could hope for.


That makes a lot of sense, thanks!



ninjaman
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29 Jun 2016, 4:42 pm

Hello,
I got my diagnosis the other day. I felt a relief as it has been some time since I first found out what Aspergers is. I am waiting for some one to contact me about what happens next. I do not know what that involves. I don't feel any better mentally.
I don't know what I am going to do about work, I feel very anxious about going back into work.I was made redundant three years ago and only worked odd days since. I do not want to tell a potential employer as I have been around people at work when they talk about disabled people. There seems to be a dislike among them.
Just wanted to update my post on here and let people know.
Thanks
Simon



AspieUtah
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29 Jun 2016, 4:53 pm

ninjaman wrote:
Hello,
I got my diagnosis the other day. I felt a relief as it has been some time since I first found out what Aspergers is. I am waiting for some one to contact me about what happens next. I do not know what that involves. I don't feel any better mentally.
I don't know what I am going to do about work, I feel very anxious about going back into work.I was made redundant three years ago and only worked odd days since. I do not want to tell a potential employer as I have been around people at work when they talk about disabled people. There seems to be a dislike among them.
Just wanted to update my post on here and let people know.
Thanks
Simon

If it is a diagnosis with which you agree, then congratulations! What to do next? Hm, I took myself to a nice dinner in the most autistic way I knew how: by myself ... reading an archaeology magazine in a great restaurant. Quite nice.

Seriously, you now have the knowledge about yourself to recognize when you do something that once would have confused or upset you. Knowing this can help you avoid the confusion and anger. You have the knowledge about predicting what you might do in certain circumstances.

But, no, getting a diagnosis isn't the same as losing your behaviors. It just helps you understand.

Continued good luck!


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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)


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29 Jun 2016, 5:24 pm

Best of luck for you especially since your a adult most people don't think Adult Autistics 'Exist'. So It will be harder for you then say me to get a diagnosis. Especially with today doctors.. And Well "Autism Experts" You know the ones that request you to drive up to their house. :hmph: Even though what Autistic person would want to go to a random person's house who claims to be a "expert" on autism. :hmph: Like seriously. What ever random flash back aside. Wish you luck. These Diagnosis can be difficult. Also Don't trust Autism "Experts" Unless they have a degree. Especially if they have you do something that common sense would dictate...


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EmmaHyde
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29 Jun 2016, 9:53 pm

Hi Ninjaman,

I am in the same boat as you as well. The first pysch doctor I talked to dismissed my concerns and mostly brushed me off. However, I'm with everyone else. Push forward for a diagnosis so that way you can figure out what help you need and also for some (like me), it can grant peace of mind.


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Dlnurmi9
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21 Sep 2016, 1:08 pm

Omg i needed to find this thread. Im 24 im a female from Connecticut and i stumbled upon aspergers while a pre-k teacher noticed stimming and other traits in my son. In doing extra research into adult traits i realized i identify with at least 95% if not more of the female traits listed on Rudy Simones website. It was like a mental breakthrough and everything that explained why ive always been the person i have been. But like other ppl im nervous to even bother because few ppl seem to doubt me. Except my fiance and mother who noticed when i mentioned that i myself also do A LOT of stimming. I do alot of other things such as have high anxiety i was assesed for things like bi-polar disorder and depression and ocd when younger. Everything was negative which has led me to believe aspergers wasnt one of their test back then. Now i see people my age having hard time finding Dr.s that will even give them the time of day. I need this for closure. It just gives me the answers i need. My son thankfully gets tested today. Im so excited i can get this diagnosed for him earlier then i had to. If i was u i would definitely go for the answer. I get worried that ill be shut down to but i should practice wat i preach and tell u the worst they will say is no.



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21 Sep 2016, 1:10 pm

Dlnurmi9 wrote:
Omg i needed to find this thread. Im 24 im a female from Connecticut and i stumbled upon aspergers while a pre-k teacher noticed stimming and other traits in my son. In doing extra research into adult traits i realized i identify with at least 95% if not more of the female traits listed on Rudy Simones website. It was like a mental breakthrough and everything that explained why ive always been the person i have been. But like other ppl im nervous to even bother because few ppl seem to doubt me. Except my fiance and mother who noticed when i mentioned that i myself also do A LOT of stimming. I do alot of other things such as have high anxiety i was assesed for things like bi-polar disorder and depression and ocd when younger. Everything was negative which has led me to believe aspergers wasnt one of their test back then. Now i see people my age having hard time finding Dr.s that will even give them the time of day. I need this for closure. It just gives me the answers i need. My son thankfully gets tested today. Im so excited i can get this diagnosed for him earlier then i had to. If i was u i would definitely go for the answer. I get worried that ill be shut down to but i should practice wat i preach and tell u the worst they will say is no.

A worthy topic bump!


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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)


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21 Sep 2016, 1:16 pm

AspieUtah wrote:
Dlnurmi9 wrote:
Omg i needed to find this thread. Im 24 im a female from Connecticut and i stumbled upon aspergers while a pre-k teacher noticed stimming and other traits in my son. In doing extra research into adult traits i realized i identify with at least 95% if not more of the female traits listed on Rudy Simones website. It was like a mental breakthrough and everything that explained why ive always been the person i have been. But like other ppl im nervous to even bother because few ppl seem to doubt me. Except my fiance and mother who noticed when i mentioned that i myself also do A LOT of stimming. I do alot of other things such as have high anxiety i was assesed for things like bi-polar disorder and depression and ocd when younger. Everything was negative which has led me to believe aspergers wasnt one of their test back then. Now i see people my age having hard time finding Dr.s that will even give them the time of day. I need this for closure. It just gives me the answers i need. My son thankfully gets tested today. Im so excited i can get this diagnosed for him earlier then i had to. If i was u i would definitely go for the answer. I get worried that ill be shut down to but i should practice wat i preach and tell u the worst they will say is no.

A worthy topic bump!

:lol:


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AnonymouslyAutistic
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21 Sep 2016, 4:08 pm

There are a lot of things to consider but I made sure to find someone who knew adults and took in a 10 page paper with my life story in it, making sure to give anecdotal evidence starting at childhood where I remember being different. Dont use "autism terms" the doctors don't like it... use YOUR words.

If your doctor will let you email them do it. I emailed another 5 pages between our two diagnostic apts and sent one last page before the last meeting. I let her know that I work better when I type and have a hard time communicating personal things verbally. It was helpful for her and made sure there were no characteristic Aspie misunderstandings.

I also had video of me as a kid - and she said it was obvious from childhood. lol.

Please let me know if the link is not allowed.

I actually just wrote something about this on my blog.

https://anonymouslyautistic.net/2016/09 ... diagnosis/


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