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How to handle assessment for other disorders

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How to handle assessment for other disorders

Postby Muninn » Sat Jan 12, 2019 4:11 pm

I signed up at a medical research center which are doing autism diagnosis, because I myself experience a lot of issues which are typical for Asperger's. And we have at least one part which shows signs of more severe Autism.
I know that any sort of diagnosis does not make the issues any better just by putting a label on it. But I hope it could help us to understand some things, or to search in other areas for some of our issues.

Why am I writing in the DID forum about it?

They sent me a huge stack of forms I have to fill out and I realized that quite a lot of questions would have different answers depending on which one of us would fill it out.
Also our mother had to fill out a form and of course she did write about the part of us, which she experienced in our childhood and adolescence most of the time, and which is not me, but our "I act as normal and unobtrusive as possible part to avoid punishment."

I am not sure if I should just fill if out from my perspective, because it is mainly me who whant's to check out if I am right with this suspicion, or if I should explain how we experience multiplicity and that it is different for other parts. Probably I should do the latter, because it might influence a diagnosis.

But i also fear of not been taken seriously, because so far most "professionals" didn't take us seriously when we talked about dissociative identity experiences.
It is additionally still difficult for me to talk about it like it is a "real thing" because all the doubt that is coming up like every other day (which seems quite stupid, considering writing here about parts all the time :lol:)

Did any of you experienced a similar situation and how did you handle this?

It is not only about Autism. We would have the same issues with filling out assessment forms if we tried to get a diagnosis for Autumns psychotic behavior. Or depression and anxiety for some of us.
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Re: How to handle assessment for other disorders

Postby birdsong87 » Sat Jan 12, 2019 4:37 pm

not saying that this is what you should do...
we would probably not mention the DID and try to answer as a system. does a symptom show up? yes, but maybe not often because that parts isn't fronting at all times. most tests let you rate the severity.
the result should give you an idea of what the outside world gets from you as an average of behavior. but it depends on the outcome you are aiming for.

if you want to be recognized as on the autism spectrum as individual parts you have to exclude the others. but then your results will only reflect part of who you are and it can make things sound worse than they are because you have other parts who might balance the effects...

although Danielle and Sascha are clearly autistic we don't have a dx for that because we balance it inside.

our former doc insisted that he can't dx us with things that only some parts have. only if there is a consistent presentation of symptoms.
studies often exclude people with obvious co-morbid disorders. if you mention DID they might not do it at all because they think you have some kind of personality disorder where you pretend to have DID. without a written report or two that confirm the dx we would never mention it.
we would mention the PTSD though, because there is a HUGE overlap of symptoms with autism and they would actually need that for proper differntial diagnosis.
not really great advice but... I guess it really depends on where you want to go with this.
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L (host 1); Asti (host 2); Annett (teen protector); Maya (child); Age (observer); Thamara (child); Danielle (aut. teen); Mike (caregiver) and others
our blog on resources: https://www.dis-sos.com
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Re: How to handle assessment for other disorders

Postby Una+ » Sat Jan 12, 2019 5:25 pm

I would say don't overthink it. Just fill out the questionnaires however feels about right for all of you. Let parts inside weigh in, but do not presume to represent them; this is about the system as a whole not just whatever identity state is in front.

When there is a forced choice that causes you conflicted feeling, simply mark all choices that feel right despite the rules saying pick one. If you have an opportunity to comment, mention you marked more than one choice because they felt right and choosing just one felt arbitrary and false. If that is how it felt.

The experience I have with a lot of questionnaires is that some multiple choice answers and Likert scales are somehow perpendicular or orthogonal to how I would have constructed the question. Some questions I cannot even begin to answer because they just do not compute. I think some of this difficulty reflects that the questions were developed by researchers who have an intellectual understanding of the condition but no subjective experience of it. They have not consulted enough subjects, or not listened closely enough, in the process of developing their instrument. So my feedback that a given question makes no sense to me is a valuable contribution to their research program.
Dx DID older woman married w kids. 0 Una, host + 3, 1, 5. 1 animal. 2 older man. 3 teen girl. 4 girl behind amnesia wall. 5 girl in love. Our thread.

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Re: How to handle assessment for other disorders

Postby Muninn » Sat Jan 12, 2019 5:56 pm

Thanks for your answers :) They did actually help me to think about some points.

if you want to be recognized as on the autism spectrum as individual parts you have to exclude the others. but then your results will only reflect part of who you are and it can make things sound worse than they are because you have other parts who might balance the effects...

That is very true. At the moment I am under the impression that some of our parts mainly exist to balance out some of the autistic traits. Even if some parts perceive themselves as very distinct individuals we are all only parts of the same brain which which would show a development disorder if there were any.

I would say don't overthink it. Just fill out the questionnaires however feels about right for all of you. Let parts inside weigh in, but do not presume to represent them; this is about the system as a whole not just whatever identity state is in front.

This goes in a similar direction, I guess. And it is a good advice to not overthink it


When there is a forced choice that causes you conflicted feeling, simply mark all choices that feel right despite the rules saying pick one. If you have an opportunity to comment, mention you marked more than one choice because they felt right and choosing just one felt arbitrary and false. If that is how it felt.

I like the suggestion (even if I do not like breaking "the rules :D), but I think it helps, if we are too conflicted about some of the answers.

studies often exclude people with obvious co-morbid disorders. if you mention DID they might not do it at all because they think you have some kind of personality disorder where you pretend to have DID. without a written report or two that confirm the dx we would never mention it.

I wouldn't insist that we do not have any personality disorder. But that would be maybe a direction which I'd try to explore if the they think that we are clearly not on the spectrum and clearly not have DID.

And you are right. As long as we do not have a written confirmation about any kind of dissociative disorder it could be safer to not mention it at this point. We already have an other dx (a written one), and the more stuff we mention the bigger the chance, that they don't want us include in any study at all.
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Re: How to handle assessment for other disorders

Postby Floralie » Sat Jan 12, 2019 5:59 pm

Autism is a neurological thing. If your brain can only work autistic way, then you are autistic. If only some parts of your system are autistic, but some are not, then it's all about DID, at least that is how I understand it. With DID some parts can have access to certain parts of brain most parts don't or the opposite, some parts can not have access to the parts of brain most parts do. But if any of them can be neurotypical and not autistic, then your brain is neurotypical and not autistic.

I think it's the same kind of thing than if one part is blind of deaf. It doesn't mean they are faking it, they just don't have access to something others do. But the fact others do means there is nothing physically wrong with ones ears or eyes or brains concerning to areas linked with hearing and seeing. Autism is physical thing, that is why I think it's comparable with being blind etc.

I think you should answer how it is to your system in general. That can be really hard task to do, I know, but I think that will give the most accurate results. It can still mean some parts can only use your brain autistic way, and in a way be autistic.

I believe autism can cause so much stress and sensory overload, you'll more likely have DID than you would without it. Also If you have DID for another reason, you can create a part/group of parts that are autistic, but because of DID. Both are neurological conditions and I think it's super important to treat the biggest reason well enough first. After that you can stat to have real results with treting the condition that was caused because of the other condition. Or it can be they are not linked like that, but just happen to exist at the same time.

I'm not expert any kind, so this is just me reasoning.

Answering to any kind of tests like we would be one is so hard to us too. Also because we are not so stupid we wouldn't know how answering affects to our results, and that makes me always feel manipulative when I choose whose answer I will give them, although I don't mean to be manipulative.

Why are you seeking to have diagnose with possible autism? Is it just to have a name for it? Or will it help you to get resources you can't have if not diagnosed? Do you wanna know if you are autistic in general, or do you want to know if certain part is? I think if only one part is something, it is not a good thing to get diagnosed to have that condition as a system, because it can hold you back in some things. Because the diagnose will be given to you as a whole system, not to just one part (or few of them), I think it's best to try to answer as a system to have as accurate diagnoses as you can.
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Re: How to handle assessment for other disorders

Postby Muninn » Sat Jan 12, 2019 7:06 pm

Thanks for your input, Floralie. It helped me to understand what I actually want to achieve by seeking a diagnosis.

I believe autism can cause so much stress and sensory overload, you'll more likely have DID than you would without it.

That is actually one of the reasons why I suspect me of being on the spectrum, because sensory overload and stress with social interactions could have played a role in developing a dissociative disorder.
I suspect that autism could be a cause why we experienced some situation as more traumatic than neurotypical persons would and that it also let us stumble in more traumatic situations because of the inability of us to communicate in a way that other humans would understand us.
All of us, even the "social ones" have issues with communications as soon as it is not related to work or special interest of this part.

Both are neurological conditions and I think it's super important to treat the biggest reason well enough first. After that you can stat to have real results with treating the condition that was caused because of the other condition.
This is an other reason why I am interested in a diagnosis. I hope that It can help to get some directions of what would help us or where to look first. It it is only me and one of my "subparts" who show more autistic traits it might be not the first step. But if all of us together still show a lot of symptoms maybe it could help us to look at this together first.
At the moment it would not help us much to only diagnose a specific part, while assuming that the rest of us is neurotypical. But the longer I think about this, the more I have the feeling that non of us is really neurotypical. Some can pretend to be, but only in certain situations and if outside of this situation it does not work anymore.

Answering to any kind of tests like we would be one is so hard to us too. Also because we are not so stupid we wouldn't know how answering affects to our results, and that makes me always feel manipulative when I choose whose answer I will give them, although I don't mean to be manipulative.
Yep. I have the same problem. I don't want to manipulate the result, but it is not that easy if I know which answer leads in which direction. But I try to be as honest as possible and to include the behavior of us as a team and not to score anything specific, because in the end that wouldn't help much.
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Re: How to handle assessment for other disorders

Postby Floralie » Sat Jan 12, 2019 7:34 pm

Maybe it helps, if you look at it as an opportunity to really get to know your whole system, instead of thinking if you have it or not. Getting to know those answers can help you just because you have never before thought your system that way, and now you will.

Also, nothing keeps you from using all kind of tools people on spectrum do to make life easier (if you don't already), if they feel helpful for any of you. Those can be an easy way to make some parts' world a little larger than it would otherwise be.
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Re: How to handle assessment for other disorders

Postby Muninn » Sat Jan 12, 2019 8:14 pm

That is true. We can look into possible tool and try them out independent of any diagnosis. If they help, great.
Actually some of it did already help slightly, because we started to read about what behavior and situations can be especially difficult for people on the spectrum and by trying to avoid or change some of them we felt better this week. Best sleep since months for some day. Of course that can and probably will change again, but I guess it is a good sign, that we feel better and not worse.

I also like the idea at looking at these questions just to get to know us better or getting aware what others might think or feel. It is not so important where the answers lead, but it already helps to think about them. Questions are good :)
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