Why Do People Hate Self-Diagnosers?

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Doom1991
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11 Jun 2015, 1:04 pm

I believe its because of the rule that psychologists go by "You cannot diagnose yourself nor can you diagnose your family". As people we either think too highly of ourselves or we think too lowly. It would be like someone who said "I feel pains in my chest so that means I have heart problems" when really if they were properly diagnosed they would find out they really had heartburn problems which isn't related to the heart at all. Same concept with someone self-diagnosing with Autism or any other disorder. Im someone who was diagnosed with Autism in middle school, has done many research papers on the subject, and has a mother who is a psychologist that shares information with me on it and yet I couldn't diagnose someone nor myself with Autism. So how could someone else diagnose themselves with it? If you go online and look up a disorders symptoms or even an illness, you will say "Hey that sounds alot like me and what I have". We all do it as its human nature which is why we go and see doctors and psychologists before taking heavy meds or go down a path of bettering ourselves.

ASPartOfMe
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11 Jun 2015, 1:38 pm

Coda wrote:

ASPartOfMe wrote:

Coda wrote:

I am 18 and so I am an adult now. The services and help in which I receive is just as good as what I received as a child. If someone believes they have autism then they should get it diagnosed so as to get access to different services like the ones I mentioned in my original post. It could help them a whole lot. I wouldn't be able to function without these services.

Many have told you that unlike where you live in other countries it is very expensive to get an assessment and that services especially for older adults are minimal or non-existent. I understand very well it is hard to for you to read the mind of other people. So I will instead ask you to be you but in very different circumstances. So lets create a hypothetical situation. You woke up one day you are 45 years old in a rural part of America, you diagnosis is gone, you are unemployed, their no competent specialist within several hundred miles of where you live, an assessment costs $1,000-2,000 dollars, neither government nor insurance companies will pay for it but you suspect you are autistic. What would you do? Would you consider self diagnosis or wait until circumstances possibly improve then get a professionally diagnosis or some other option? I am going to change the hypothetical circumstances somewhat you have the money to pay for a diagnosis but there are minimal to no benefits available beyond validation and confirmation that you are autistic. What would you do?

Well... I'd feel very lost, I know that. I think I'm starting to understand. Before I was diagnosed, I lived a in a small town in the North (Scarborough) that didn't have a clue what autism was (My joke is that someone could be born with Down Syndrome and the doctors wouldn't know). They labelled me as naughty and slow and left it at that but my mum knew something was wrong and so moved us to London where I was diagnosed the year I got there.

I guess I could imagine myself as an adult living in Scarborough with no job. I would probably have heard about autism and would have noticed all of the similarities; especially the eye contact one as teachers constantly forced me to look into their eyes. Is my parents still alive in this hypothetical scenario? If they are I would still be living with them probably still unable to bathe myself because I wouldn't have gotten help. If they are dead, I'm probably living with a family member...

I don't know what I would have done... I probably wouldn't have been able to afford a private assessment for autism, I wouldn't have been able to move because I hate change. I don't know. It's scary not knowing. I would have probably would have just stayed the same person I was before I was diagnosed. Unable to do anything for myself, constantly having violent meltdowns, unable to communicate correctly...

I just can't imagine myself going on in life without a diagnosis as I'm not as high functioning as a lot undiagnosed people are, they have been undiagnosed and have stayed out of the radar because they were able to get on in life. I'm sure they've struggled but they've been able to sort themselves out. (I hope I've worded this okay. I've read through it and I can't tell if it sounds insulting but I have a feeling it might be, I'm not sure).

I'm starting to understand their predicament though, slowly but surely.

I have found nothing insulting in any of your posts and am glad you are starting to understand. That does not mean you have to agree with the self diagnosis solution to those circumstances. To add to these circumstances was that only the lowest functioning autistics were diagnosed back then because that was all that was known. The other Autistics were mis diagnosed with various mental illness or thought to have character flaws. So most of us had no clue we were autistic until the criteria for autism was broadened. If you could not function you were institutionalized. Many here were thrown into street by their families who felt that they had character flaws (lazy, rude, making it all up etc) and needed Tough love to fix these flaws. Even the highest functioning have often faced a life of bullying and discrimination. The older people who post here are the people who found ways to survive. Compared to a many in my generation I was fortunate but there still have been struggles and false labels given to me so when I read others saying their choice is invalid or saying people in general who make that choice have bad motives it is just a continuation of what we heard about ourselves our whole life.

_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman

nerdygirl
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11 Jun 2015, 1:50 pm

Doom1991 wrote:

After seeing several regular doctors about various issues I had and not getting proper treatment, I don't exactly trust that the "experts" have it all together.

One "allowed" my son to almost die when I was in dysfunctional labor (and, yup, I diagnosed that one myself.)
One caused me to go years with a gallbladder issue until I finally had a full-blown attack which I identified myself (and went into a different doctor to tell her exactly what I had.) An ultrasound *confirmed* but did not diagnose what I had. I self-diagnosed.
One caused me to go with such severe back pain for 6 months to the point where I couldn't even walk a step or get out of bed on my own. I told her I needed surgery...but she didn't listen until I ended up in the ER screaming.

In all three cases, I self-diagnosed. In two of the cases, proper testing would have quickly *confirmed* my situation. In the last case, a test was not sufficient (the MRI did not show the extent of my problems.)

Doctors (and psychologists) are not always with it.

We go to them to get HELP, not necessarily for a diagnosis. My son got a wisdom tooth infection this week. We didn't need to see a dentist to know exactly what was going on. We needed the dentist for a prescription. When I had my gallbladder removed, I didn't go to the doctor for a diagnosis - I went for TREATMENT. If I have AS and no need for support, I have no reason to see a psychologist. If I am looking for TREATMENT or SUPPORT, I will need to go see if I can get an official diagnosis.

iliketrees
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11 Jun 2015, 1:55 pm

The issue is the human mind is even more complicated. Things with physical symptoms are more obvious. Still a lot of things that look very similar but still.

kraftiekortie
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11 Jun 2015, 2:00 pm

You hit the nail on the head. Autism is not a "physical" disease with definite symptoms. It's a much more subtle condition, especially within the "high end" of it. There are many theories as to causation. In fact, there are some people who believe there are "autisms," rather than an "autism."

An "official" diagnosis of autism, especially within the "high end" of it, does not really carry all that much objectivity--especially when compared with something like Down Syndrome, or perhaps even schizophrenia.

I believe there are times when a person, performing thoroughgoing research, could reach a more objective conclusion than a psychologist or psychiatrist who does not have the latest "lowdown" on autism.

nerdygirl
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11 Jun 2015, 2:04 pm

We are back to where these threads always lead - self-diagnosers having to prove their "legitimacy" here.

Who's to say all the psychologists doing the diagnoses of the people diagnosed here on WP are correct? I read plenty of threads re: people questioning their diagnosis.

Who's to say that someone isn't just saying they are diagnosed when they haven't been. It's not like we all have to submit a day, name of psychologist and diagnosis synopsis in order to join here. Or do you just assume that because someone on WP says they have been diagnosed that they are telling the truth because they have AS and are here on WP.

Why not just lie about it instead of getting grief by saying one is self-diagnosed?

Give me a break. These threads need to end.

DeepHour
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11 Jun 2015, 2:09 pm

^ More good sense here.

Khillo81
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11 Jun 2015, 2:11 pm

Well, as for me, I only found out about Asperger's in my twenties and read that the only way to get a diagnosis is to involve the parents (as the therapist will need to go back to my childhood). My parents already worry too much about me, if they find out that I have a disorder, I won't be able to live alone as I do now. Plus, even if I had a diagnosis, I'm not likely to tell anyone, so it won't change anything for me. I've more or less learned to live with it. Once in a while, the loneliness gets too much but most of the time, I'm OK.

androbot01
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11 Jun 2015, 2:13 pm

kraftiekortie wrote:

I'm hearing you say that no one knows what autism is. Is that right? If so, I tend to agree. But I think it is physical, brain chemistry and all that. And I think a diagnosis does carry a certain amount of objectivity, even if it's only based on anecdotal evidence. Still early days though.

mpe
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11 Jun 2015, 2:17 pm

laminaria wrote:

There are very real reasons as to why I may never be able to obtain a professional diagnosis. I grew up in an age where we didn't have the luxury of diagnostic or support services for Asperger's. Whilst I am lucky enough to live in a country with (theoretically) free health care, I still can't just turn up and demand access to the services I want. There are very real problems with getting past the initial gatekeepers due to funding issues and extremely patchy provision of mental health services across different parts of the country.

There's also the issue of such conditions being lumped with 'mental health' in the first place.

gamerdad
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11 Jun 2015, 2:20 pm

AspieUtah wrote:

BTDT wrote:

Has anyone checked the qualifications of the folks that have diagnosed you as an Aspie?
I thought the psychologist had the best qualifications, but it turns out the ordained minister actually has much better experience.
1) his wife works with Aspies as kids and they come around to his house as adults so he is quite familiar with how adult Aspies behave.
2) case worker for high risk adolescent kids
2) jail counselor and probation officer

Could other Aspies can obtain unofficial diagnosis from people who, while they can't provide an official diagnosis, have a more than enough experience to say yes or no?

This makes some sense. Parents of children with ASD might find a new career in unofficial diagnosing.

Quite frankly this seems like a terrible idea to me. If you're going to consider someone qualified enough to give a positive diagnosis, then, implicitly, you also consider them qualified enough to say someone isn't on the spectrum as well. But their experience isn't grounded, it's anecdotal. So what happens when you have a parent who's only worked with "low functioning" kids getting asked if they think a "high functioning" adult is on the spectrum? What happens when they encounter a self diagnosed adult who they don't think is on the spectrum? As if we don't have enough issues with parents of autistic kids invalidating "high functioning" adults as "not really autistic" or "not autistic enough" in spaces where the two groups interact.

This is precisely the reason why some people push professional diagnosis so hard. No matter how much you study up on ASD and expose yourself to it, it can't replace real experience and training in the field. However, in the case of self diagnosis, at least the individual has a window into their own mind that nobody else has access to. They have something that the professional doesn't have access to, to at least make up for some of their shortcoming with regards to experience.

A third party who has neither the background of an experienced professional nor the window into the person in questions mind, is worse than either IMO. At best, they should refer someone they suspect for professional diagnosis, or put them on the path to self diagnosis*. But I think it's incredibly unethical to give the diagnosis themselves.

*Just a note here, I think this should be the approach that mental health professionals not familiar with autism spectrum diagnosis should take too.

BTDT
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11 Jun 2015, 3:44 pm

If cost were not an issue, wouldn't it be best to get at least two separate evaluations?

The first would be by someone who is an expert in mental health conditions that are sometimes mistaken for Aspergers--to make sure you really are on the spectrum. The second would be by an autism specialist, who might not know about rare mental health disorders because they simply don't have enough time to be an expert in everything associated with mental health.

sonicallysensitive
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11 Jun 2015, 4:08 pm

Coda wrote:

Why is there a lot of hatred towards people who self-diagnose themselves with Aspergers or autism?

Hatred is a strong word, and probably the wrong word.

I personally don't hate anyone - nor would I hate someone for 'self-diagnosing'.

However, many who 'self-diagnose' interpret any questioning of the validity of a 'self-diagnosis' as a personal attack: possibly as they see the label they have ascribed themselves as part of their identity, and indelible to it.

This is a misinterpretation of an issue - and has been encountered on this site.

Questioning an issue is often misconstrued in such a way and twisted by the offended to be a self-directed ad hominem.

This speaks a lot in and of itself.

To summarise with respect my own views:
1) No hatred of anyone - especially so individuals online I don't know
2) Doubt over 'self-diagnosis' - for many, many reasons.

JenniferJones2015
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11 Jun 2015, 4:24 pm

mpe wrote:

laminaria wrote:

There's also the issue of such conditions being lumped with 'mental health' in the first place.

Exactly. I don't understand why a neurobiological condition is connected to lack of 'mental health.' Someone who is diagnosed with adult onset diabetes-induced blindness isn't considered 'physically unhealthy' (though, of course, they might have life-quality maintenance challenges). Not to mention all the rhetoric and drama about the need to 'cure' AS/ASD, and/or those with AS/ASD. What the hell?

JenniferJones2015
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11 Jun 2015, 4:26 pm

Coda wrote:

ASPartOfMe wrote:

Coda wrote:

You have worded your grappling with trying to understand an abstract experience effectively and clearly, Coda. What you have written does not sound insulting at all (to me). You also have a good sense of humor. Keep it up!!

B19
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11 Jun 2015, 4:40 pm

nerdygirl wrote:

We are back to where these threads always lead - self-diagnosers having to prove their "legitimacy" here. Give me a break. These threads need to end.

Yes, they do need to end. We know they lead to this. Obviously some people want that. To me, it is divisive and destructive.

The implicit assumption in many of the "hater's" posts is that false positives and false negatives never affect ASD diagnoses, so their accuracy is always 100%.

To those proud of their diagnosis and/or like to sneer at the "undiagnosed":

blowing someone else's candle out doesn't make yours burn any brighter.

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