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Jacoby
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10 Jun 2015, 9:58 am

I think it comes from the fact that a common thread of attack against a lot of us is to cast doubt on diagnosis and to claim that it is an invented overdiagnosed disorder(some people hold ADHD in a similar light) so I can see how self-diagnosed might be frowned upon by some who feel insecure because of those attacks. I don't care really, an official diagnosis is useful for seeking services and getting accomedation but if you don't need that and have a pretty good handle on your life then there is very little reason besides peace of mind to pursue it.



iliketrees
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10 Jun 2015, 10:03 am

Because the human mind is complex and there are a variety of things that have autism-like symptoms that self-diagnosers haven't even considered I guess. Or that people have little basis for thinking they have autism. Not sure.



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10 Jun 2015, 10:06 am

Like I've stated many times, autism is not something that's glamorous.

The diagnosis (or self-diagnosis) doesn't offer prestige, or the chance to make money in and of itself.

The fast majority of the time, one "self-diagnoses" in order to find a reason for one's eccentricities. To make sense of their "unusual" reaction to the world and its contents.



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10 Jun 2015, 10:32 am

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

I've gone through a few posts on the forums and have noticed a lot of hostility between some people who are diagnosed and some who are self-diagnosed.

I think in very 'black and white' way, so I find it hard to understand that someone can be 'self-diagnosed'. I always think you either have it or you don't. You can't think you have it but not have it diagnosed... It feels strange to me but that's because I think in a very rigid way. So don't take my view personally. :huh: <- [I don't know what this smiley face mean but I assume it means that my opinion is stupid or something.]

What I fail to understand is why self-diagnosers don't try and get diagnosed once they believe they have autism. Once you're diagnosed you get a lot of access to things to help you. Once I was diagnosed I got a lot of therapy and went to a private special needs school.

I'm 18 now (so classified as an adult) and get seen to by the adult mental health clinic who come out a lot to check that I'm okay, to help me and to see if I need anything. I get a visit once a week by person who arranges different things for me like outings and such. In college I get special help like an LSA who looks after me throughout the day and special arrangements for tests and things. I get a card that allows me to bring a carer (usually just my mum) out with me to places like the cinema, London eye and stuff without having to pay for them as they are my carer. I get arranged transport so I don't have to take public transport... Lots of different things that so many adult autistics can access.

If you are an adult who believes they have autism, wouldn't you get a diagnosis so that you can access stuff that can help you?

Especially if you are currently unemployed or in case you lose you job as you can then receive disability benefits which is lots more than normal benefits.

So what I want to know; What's with the hate between the diagnosed and the self-diagnosed and why don't the self-diagnosed get officially diagnosed so that they can receive help and special arrangements?



Sometimes it's pointless to get diagnosed. If you have other disabilities so you re already receiving help such as with employment or getting disability payments, an ASD diagnoses won't change anything.

Some people have jobs and live on their own so they may not see any point to get a diagnoses and it's expensive in the states to get one I hear.


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LadyLuna
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10 Jun 2015, 11:25 am

laminaria wrote:
I'm self diagnosed. I'm reasonably certain of my diagnosis. I have no interest in telling anyone else about it. My reason for self diagnosis was trying to understand why I'm the way I am. For years it was something I was ashamed of and have only recently come to accept that I probably do have an ASD. I have a somewhat vague official diagnosis of mood disorder, for which I take lamotrigine. Based on my own research I think that is either a misdiagnosis or more likely just a part of something larger.

I haven't really come across much hate through reading the forum. There is certainly some, and some people have very strong views about it, but there is plenty of acceptance too.

My potential problems with getting an official diagnosis would be : -
1. I'm fifty one years old.
2. I'm female.
3. I have developed a lot of coping strategies over the years albeit at some cost to my mental health.
3. I appear to most people to be a reasonably well functioning adult. Nobody really sees the personal costs of maintaining my coping strategies over a long period of time. That may change if I reach the stage where I can no longer sustain that.
4. I've been doing the same highly responsible job for twenty five years.
5. I live in the UK. Theoretically I could be diagnosed for free through our National Health Service. In reality there is nobody in my area with experience of diagnosing adults with ASD. My GP would have to refer me to someone out of the area. I might get lucky with persuading my GP to do that or 1 - 4 above might work against me.
6. There are no support services in my area for adults with ASD.

None of those problems are insurmountable but it would require me to expend a lot of effort and/or money to get past them. In return I would get a piece of paper confirming something I'm already fairly certain about. There wouldn't really be any practical benefit to having that piece of paper given my current circumstances. If my mental health were to deteriorate though and I were to lose my job, my opinion would probably change.


This is very similar to how I feel, except that I an 47 and live in the US.

I am reasonably confident that I have the symptoms. It is not just about social awkwardness. that is only a very small part of it to me. My biggest issue is dealing with sensory overload. However, I am not confident that the symptoms are severe enough to rate a diagnosis. Especially since I have do a lot of coping strategies and work arounds. This makes the symptoms appear much less that the actually are.

I am not seeking any kind of assistance. I have worked the same job for 19 years and get good performance reviews.

I do not go around telling people I have AS. I really do not go around claiming to be AS except on this site. In real life, I have told my husband that I think I might be an HFA, but he is the only one. I once told him one of my favorite things to do as a child was to sort the my grandmother's button box. He said that sounds like autism or OCD. He is a very blunt person.

I will however tell people about some of the symptoms individually if it arises. "Sorry, sensory overload, I need to go somewhere quiet for a bit." I generally pass off audio integration disorder as hearing problems, since it is a bit hard to explain. I think I have explained it to a few people once.



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10 Jun 2015, 11:39 am

My journey started 4 years ago. I heard about Asperger's Syndrome and it sounded someone like my brother. I found a scholarly article about it and thought I would see if my Engineer brother would qualify. What I found absolutely shocked me. I spent my whole life with literally nobody understanding me and my life story was spelled out not his.

Fast forward to today and I tried, I really tried to get an official diagnosis. On the plus side, everyone I spoke to said that it was "highly likely" I would meet the DSM IV criteria but almost nobody diagnoses adults without a complete evaluation (over $1000). My anxiety and depression is much more critical so I treat those instead. There is also the 'we need a parental interview'. Good luck getting an unbiased report from a parent in denial and another who refuses to even discuss or consider it. Guess orphans don't have Aspergers?

Ultimately, two of my counselors told me flat out "what's the point?" and acted like I asked to be put in a prison cell. All that's going to happen is that I will either be told what I already know or that I am so delusional I am making it up. I will let you guess what the obvious answer is. As a skeptical person by nature who hates ambiguities, I am still 100% sure I meet the criteria for Aspergers or HFA level 1.

My biggest issue is that I am too 'normal' to most so called experts. If only they knew how bad my anxiety really was! Back to the OPs question, I have never had anyone doubt me here or in real life but I am about as stereotypical as you can get.



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10 Jun 2015, 11:44 am

I don't hate people who self-diagnose.
Instead, I view the process of self-diagnosis as invalid.
I don't like how people say that they are autistic without diagnosis.


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10 Jun 2015, 11:58 am

I'm self-diagnosed because I have most of the characteristics of AS. I've made it far enough without outside help so a formal diagnosis wouldn't gain anything for me. Before I started posting on WP I did lots and lots of just reading threads and it turned out that several people had been misdiagnosed by mental health practitioners, anyway. That tells me that even a formal diagnosis is not 100% certain.


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10 Jun 2015, 12:03 pm

Raptor wrote:
it turned out that several people had been misdiagnosed by mental health practitioners, anyway. That tells me that even a formal diagnosis is not 100% certain.


My pediatrician wrote in his psychological report (at age 10) that I was "disobedient" and "thought he was a class clown", all because I started to resist a painful and invasive test. I was practically mute other than talking about my special interests and a huge teacher's pet (think Lisa Simpson-like). Ever since I found that out I simply don't blindly trust so called experts.



bookworm360
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10 Jun 2015, 12:14 pm

I have noticed some dismissiveness if not outright hatred towards self diagnosers on the forums. I can kind of understand it, people do jump on the bandwagon, and the entertainment industry has made it kind of attractive over the last couple of years. But I wish there was a little more understanding about the fact that circumstances greatly affect whether people are diagnosed or not, especially age as autism was not widely known/understood and many people whose behavior as children/young adults would have caught the attention of the parents/teachers/counselors were either overlooked or misdiagnosed.

I only heard of Asperger's in my twenties. The introduction was through entertainment and I noticed some similarities, but I dismissed the possibility. As I learned more about autism over the years I saw more traits that rang true to me, but I didn't pursue a diagnosis because I was ashamed. All I wanted to be was normal and if I could live a seemingly normal life without a label that's what I wanted, so I denied it to myself for years saying 'I'm just a little odd' 'I have a couple quirks' 'It's just the way I am'.

After a while though, it just became impossible to deny that something was wrong (or different) with me, and I struggled to come to terms with that for a long time. I only told my parents about it within the last two years, and the few friends I've been able to make I've only told over the last few months.

I am seeking a diagnosis, more for my own satisfaction rather than any benefits (though legal protections would be nice), but I'll only be able to do so if my insurance covers it (and I can only afford insurance within the last two years because of the Affordable Care Act). The American health care system is all messed up and insanely expensive.



btbnnyr
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10 Jun 2015, 12:20 pm

I don't have problems with people who lack official diagnosis, if they say that they have autistic traits but don't say that they have autism or are autistic.


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LadyLuna
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10 Jun 2015, 12:21 pm

Oh yes, I had forgotten about the parental interview part.

Presumably because your parents would be less biased than you.

My mom has been know to deny bad things that happened. Like when I was 12 I had this really huge tantrum while on a family vacation because my dad changed his mind about the schedule. When I brought it up later, she said "that never happened."

So if I needed parent's agreement that I had the symptoms I would never be able to get it.



btbnnyr
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10 Jun 2015, 12:26 pm

The purpose of the parent interview is to get information about childhood behaviors.
Its purpose is not to eliminate bias, which is part of any subjective observation, but to get a view of childhood behaviors from outside the person's mind.
The purpose of clinical observation is also to get outside observation, not to eliminate bias, which is an inherent part of assessment for mental disorders.


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10 Jun 2015, 12:31 pm

In my case, I actually have a number of diagnosis that all agree that I have Aspergers--just not an official one.

It has been brought up that I'm really a polymath, someone who can learn multiple disciplines and do well in all of them. It makes sense--I've been involved in competitive aspects of widely different hobbies and done extremely well--lots of certificates, trophies and plaques.



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10 Jun 2015, 12:56 pm

GiantHockeyFan wrote:
Raptor wrote:
it turned out that several people had been misdiagnosed by mental health practitioners, anyway. That tells me that even a formal diagnosis is not 100% certain.


My pediatrician wrote in his psychological report (at age 10) that I was "disobedient" and "thought he was a class clown", all because I started to resist a painful and invasive test. I was practically mute other than talking about my special interests and a huge teacher's pet (think Lisa Simpson-like). Ever since I found that out I simply don't blindly trust so called experts.


When I was in the 3rd grade it became noticed by my teachers that my elevator didn't quite go all the way to the top. As a result, it was recommended to my parents that I be taken to a mental health care professional. They went through the motions and in the parking lot before we went in to see the psychologist my old man warned me that there'd better not be anything wrong with me.

With just the two of us in the office, the friendly late middle aged psychologist asked me a very long (to me) battery of questions but, of course, after the warning in the parking lot I gave the answers I thought were "right" in order to avoid the wrath that would await me if there was anything wrong with me.

In the long run nothing really came of it and my parents happily put the whole thing behind them.
My defense mechanism worked and it's just as well..... :?


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laminaria
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10 Jun 2015, 1:09 pm

My parents are both dead so wouldn't be much help with describing my childhood behaviour. I don't even have things like school reports anymore. Pretty much the only information I have is what I can personally remember.