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Self-diagnosis

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How do we feel about self-diagnosis?
I have a medical diagnosis and I support self-diagnosis 38%  38%  [ 17 ]
I have a medical diagnosis and I do NOT support self-diagnosis 31%  31%  [ 14 ]
I am self-diagnosed and I support self-diagnosis 29%  29%  [ 13 ]
I am self-diagnosed but I feel like if someone is self-diagnosed they should get a medical diagnosis 2%  2%  [ 1 ]
Total votes : 45

ASPartOfMe
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07 Jun 2020, 10:23 am

Bucketowater wrote:
My therapist, who I was seeing for depression / anxiety, told me I was ASD/PDA. I trust her (ex NHS). It’s been disturbing but very useful and I can now see prior burn outs for what they are and can understand both why it seems to be getting more forefronted and that it would be risky to return to work without appropriate accommodations. But, I don’t need paid support, so I don’t see a need to get diagnosed formally. I would welcome others’ opinions.

I describe this as a “unofficial diagnosis”. One has professional validation for their suspicions but a diagnostic report is not produced, so while one can not gain benefits or accommodations one does not need to worry about a report getting in the wrong hands, one does not have to go through the effort of changing the diagnoses if one later on changes their mind. This option should also be less expensive as the work needed to produce an official diagnosis is not needed.

That said I would personally advise getting an unofficial diagnosis from a clinician with knowledge of how autism presents in a person of your age and gender not some general therapist.

As mentioned earlier be it self, unofficial, or official diagnoses one should come away from it confident enough that one is autistic that one can move forward with one’s life under the assumption one is autistic.


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07 Jun 2020, 4:15 pm

As someone who needs a lot of support to get by, I will admit to being frustrated and confused by those who decide to remain self diagnosed because they have no need for supports. Part of the definition of having autism is that, at the very least, you require some support to function. If you don't need support, you don't meet diagnostic criteria and therefore don't have autism.


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Dear_one
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07 Jun 2020, 4:18 pm

StarTrekker wrote:
As someone who needs a lot of support to get by, I will admit to being frustrated and confused by those who decide to remain self diagnosed because they have no need for supports. Part of the definition of having autism is that, at the very least, you require some support to function. If you don't need support, you don't meet diagnostic criteria and therefore don't have autism.

If I'd gotten support, my "getting by" might have included moderate success, rather than continued misery.



I love belko61
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07 Jun 2020, 4:41 pm

StarTrekker wrote:
As someone who needs a lot of support to get by, I will admit to being frustrated and confused by those who decide to remain self diagnosed because they have no need for supports. Part of the definition of having autism is that, at the very least, you require some support to function. If you don't need support, you don't meet diagnostic criteria and therefore don't have autism.


Speaking for myself I have no need for supports because I have an extremely hard time accepting help or advice. If I'm having trouble I ignore/avoid the issue/person and then I'm not in trouble anymore. Avoid, quit, refuse to admit, live alone, move, ignore and various other strategies. At 55 I can't keep running away and it's getting harder to maintain the mask of normalcy. Time to face the music and confront my shortcomings. The same way you distract a child when they misbehave I have always been able to distract my own brain with a false sense that everything is ok.



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07 Jun 2020, 5:01 pm

StarTrekker wrote:
If you don't need support, you don't meet diagnostic criteria and therefore don't have autism.

The only reason I don't agree with this is because there are people that may have needed support as children/adolescents, but have learned to deal with their problems on their own as they have gotten older, which a lot of people who don't get diagnosed until later end up doing. Me and my brother needed supports as children, but we don't necessarily require them now. Being able to reasonably cope with your issues as an adult doesn't make autism disappear, and for some people their ability to cope makes it so they don't require the aid of others anymore. Their problems aren't now nonexistent, they just are able to deal with them better.



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07 Jun 2020, 5:23 pm

If coping, without very much support, was on a 0(not coping at all) to 5(coping as well as the avg person my age)scale then in Essex I was a 1. If you're a non acute person with severe mental illness then 1 can be regarded by the mh pros as an acceptable level of coping .

I'm perhaps a 3 now,on that scale, thanks to the help I get from my stepdaughter here in Wiltshire .



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07 Jun 2020, 6:59 pm

StarTrekker wrote:
As someone who needs a lot of support to get by, I will admit to being frustrated and confused by those who decide to remain self diagnosed because they have no need for supports. Part of the definition of having autism is that, at the very least, you require some support to function. If you don't need support, you don't meet diagnostic criteria and therefore don't have autism.


Would you say that all genuine Autistic people died before the condition was recognized? As I recall, it was first used to describe people who should not be killed, but who were only in immediate danger from death camps. In general, women get support much more readily than men do, and their consequent advice is misleading.



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08 Jun 2020, 3:25 am

StarTrekker wrote:
As someone who needs a lot of support to get by, I will admit to being frustrated and confused by those who decide to remain self diagnosed because they have no need for supports. Part of the definition of having autism is that, at the very least, you require some support to function. If you don't need support, you don't meet diagnostic criteria and therefore don't have autism.

In my case (by the way, by the terms of this thread, I'm "unofficially diagnosed", not "self-diagnosed"), I do get support - mainly from my family. The important thing was to learn what I needed to remain sane. After that, I'm more successful in obtaining what I need with help from my family, friends and sometimes some money - as opposed to the state and its officials.

It's significantly different for my daughter who is still at school - so she's officially diagnosed.


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08 Jun 2020, 5:52 am

ASPartOfMe wrote:
Bucketowater wrote:
My therapist, who I was seeing for depression / anxiety, told me I was ASD/PDA. I trust her (ex NHS). It’s been disturbing but very useful and I can now see prior burn outs for what they are and can understand both why it seems to be getting more forefronted and that it would be risky to return to work without appropriate accommodations. But, I don’t need paid support, so I don’t see a need to get diagnosed formally. I would welcome others’ opinions.

I describe this as a “unofficial diagnosis”. One has professional validation for their suspicions but a diagnostic report is not produced, so while one can not gain benefits or accommodations one does not need to worry about a report getting in the wrong hands, one does not have to go through the effort of changing the diagnoses if one later on changes their mind. This option should also be less expensive as the work needed to produce an official diagnosis is not needed.

That said I would personally advise getting an unofficial diagnosis from a clinician with knowledge of how autism presents in a person of your age and gender not some general therapist.

As mentioned earlier be it self, unofficial, or official diagnoses one should come away from it confident enough that one is autistic that one can move forward with one’s life under the assumption one is autistic.


Thank you for this post. It has really helped.



ASPartOfMe
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08 Jun 2020, 9:17 am

Bucketowater wrote:
ASPartOfMe wrote:
Bucketowater wrote:
My therapist, who I was seeing for depression / anxiety, told me I was ASD/PDA. I trust her (ex NHS). It’s been disturbing but very useful and I can now see prior burn outs for what they are and can understand both why it seems to be getting more forefronted and that it would be risky to return to work without appropriate accommodations. But, I don’t need paid support, so I don’t see a need to get diagnosed formally. I would welcome others’ opinions.

I describe this as a “unofficial diagnosis”. One has professional validation for their suspicions but a diagnostic report is not produced, so while one can not gain benefits or accommodations one does not need to worry about a report getting in the wrong hands, one does not have to go through the effort of changing the diagnoses if one later on changes their mind. This option should also be less expensive as the work needed to produce an official diagnosis is not needed.

That said I would personally advise getting an unofficial diagnosis from a clinician with knowledge of how autism presents in a person of your age and gender not some general therapist.

As mentioned earlier be it self, unofficial, or official diagnoses one should come away from it confident enough that one is autistic that one can move forward with one’s life under the assumption one is autistic.


Thank you for this post. It has really helped.

You are welcome.


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08 Jun 2020, 11:23 am

StarTrekker wrote:
As someone who needs a lot of support to get by, I will admit to being frustrated and confused by those who decide to remain self diagnosed because they have no need for supports. Part of the definition of having autism is that, at the very least, you require some support to function. If you don't need support, you don't meet diagnostic criteria and therefore don't have autism.


What if you say you don't need support because of stubborn pride, or an inability to see you do actually need support ? At what point does one say a person is functioning well enough not to need support ?



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08 Jun 2020, 12:52 pm

StarTrekker wrote:
As someone who needs a lot of support to get by, I will admit to being frustrated and confused by those who decide to remain self diagnosed because they have no need for supports. Part of the definition of having autism is that, at the very least, you require some support to function. If you don't need support, you don't meet diagnostic criteria and therefore don't have autism.


Fair point. As someone who is self-diagnosed, allow me to explain where I'm coming from. I don't struggle with employment and work stress because I'm a housewife. I can manage cooking, doing laundry etc. because I have a lot of free time to focus on my interests. My social life is limited to family and a small group of friends, so no stress there either. To put it bluntly, I got extremely lucky, and I now live in an environment that accomodates me and my needs. In the past things were different, and had I had a diagnosis back then, I definitely would have needed and wanted support.



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08 Jun 2020, 5:03 pm

firemonkey wrote:
StarTrekker wrote:
As someone who needs a lot of support to get by, I will admit to being frustrated and confused by those who decide to remain self diagnosed because they have no need for supports. Part of the definition of having autism is that, at the very least, you require some support to function. If you don't need support, you don't meet diagnostic criteria and therefore don't have autism.


What if you say you don't need support because of stubborn pride, or an inability to see you do actually need support ? At what point does one say a person is functioning well enough not to need support ?


I have always had a stubborn streak and sense of independence that I can fix things myself. There was a time when I "wondered what it would feel like" to cut myself, although I never did. That problem was solved by watching a tv movie sponsored by a book about depression. I never knew what depression was but recognized myself in their anecdotes. Once I identified what was wrong I researched and made changes to my life and asap those thoughts went away forever. I have always been able to manage things myself through education and facing things head-on. It is the fear of the unknown that I have difficulty handling - so I throw myself into scary situations intentionally until the fear goes away - I can handle discomfort, but not fear. I am lucky and have never been suicidal. The knife thing was not about dying. I still have depression - ask anyone in my family - but I honestly don't feel depressed. I just think that they are too emotional so have a skewed view of life. I am logical and never cry, I am detached, I feel I am fine. My confusion now is caused by facing how different I am from the norm and wanting a fuller relationship with my kids and family. And I need to learn coping skills that don't involve avoidance if I'm going to do that. I don't want to grow old alone but that was where I was headed.



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08 Jun 2020, 8:22 pm

It just occurred to me that I’m semi-self-diagnosed. Officially diagnosed with Asperger’s syndrome under DSM IV, when I was probably nine or ten, self-diagnosed as ASD level 2 under DSM V, because that’s what seems to fit me best. But I have no official diagnosis under DSM V because neither I nor my parents have seen a reason to get me re-assessed since they switched over.


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08 Jun 2020, 10:40 pm

You, automatically, still have ASD, based on your DSM-IV diagnosis. You just don’t have a “level,” officially.



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09 Jun 2020, 5:16 am

kraftiekortie wrote:
You, automatically, still have ASD, based on your DSM-IV diagnosis. You just don’t have a “level,” officially.

Correct.
Autism Spectrum Disorder - Diagnostic Criteria
Quote:
Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.

You self diagnosed your level, not ASD.


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