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Sethno
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29 Jul 2019, 10:24 am

The other day I told someone I was on the spectrum. Their reaction was to say a relative of theirs (whose background I don't know) believes there's a tendency to "over-diagnose autism". (I suspect that was said because I'm high functioning.)
I didn't say anything. I'm still trying to figure out how to "clear things up" for them.


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What would these results mean? Been told here I must be a "half pint".


TheOther
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29 Jul 2019, 11:09 am

If anything, I think it is way under diagnosed because high functioning people often just go through life not knowing, the only signs being that they are a little awkward or have a little trouble fitting in. I think about the highest functioning people that have been diagnosed, and wonder if there might be a level of it so subtly on the spectrum that no one would ever realistically figure it out. How common is that?



kraftiekortie
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29 Jul 2019, 11:13 am

It was alleged that autism was "over-diagnosed" under the DSM-IV; this is one of the reasons why the DSM-V was compiled.

It's quite possible that autism is "under-diagnosed" amongst females because of the lack of acknowledgement that a "female presentation" exists.

I say this because it is often stated in official prevalence numbers that males outnumber females 4-1 (for autism in general). On WrongPlanet, the ratio is more like 1:1. There seems to be virtually an equal amount of girls/women with autism as boys/men.



Sethno
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29 Jul 2019, 11:50 am

Anyone have any suggestions on what I might say to this "well-meaning" person?


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What would these results mean? Been told here I must be a "half pint".


kraftiekortie
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29 Jul 2019, 11:59 am

Just say you were not one of the people who were "overdiagnosed."

Just say that being on the Spectrum really isn't "a walk in the park." That you didn't feel a desire to get diagnosed.....that you were diagnosed on the Spectrum for a good reason; it wasn't something frivolous.



Sethno
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29 Jul 2019, 12:05 pm

kraftiekortie wrote:
Just say you were not one of the people who were "overdiagnosed."

Just say that being on the Spectrum really isn't "a walk in the park." That you didn't feel a desire to get diagnosed.....that you were diagnosed on the Spectrum for a good reason; it wasn't something frivolous.


Thank you. I'll have to modify that a bit, tho', since in my case I'd "known" [beyond "strongly suspected] I was autistic since I was in my 20s and only got diagnosed a few years ago.

If my doctor (treating me for depression) hadn't started insisting I get a therapist, it never would have happened.

The therapist picked up on the autism on my second appointment, NOT having been told what I suspected. (Tho' when he'd brought up autism and I told him what I suspected, and for how long I'd suspected it, he was very enthusiastic.)

Later, my doctor heard about this and said "good catch". You know, I never thanked the doctor for being so "forceful" on my getting a therapist. I'll have to say something on my next appointment.


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You seem to have both Aspie and neurotypical traits

What would these results mean? Been told here I must be a "half pint".


Joe90
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29 Jul 2019, 12:14 pm

I believe it is being overdiagnosed these days. I'm not saying you're overdiagnosed, but these days it seems that adults say "oh I am shy and suffer with depression and anxiety, maybe I have Asperger's" and then they go and get themselves referred. Or their kid is shy and gets anxious, and they try to get them diagnosed. When I was a kid, there was only me and 1 other child in the whole school who had an actual diagnosis of Asperger's (I would have known if there were anyone else because the SENCO nurse (the person who specialised in autism and other special needs) got the parents of the Aspie kids to get to know each other). But these days I know of so many parents of children that are being diagnosed, that I almost wish I was a child living in this decade where I wouldn't feel like a 'rarity' at school. But back in the 90s Asperger's used to have more boxes to tick, like sensory issues, routines, special interests, meltdowns, social awkwardness, stimming and repetitive behaviours, and the person had to have most of them in a way that affected their lives.

My brother is a perfect example of overdiagnosing. He was diagnosed at age 30, because ever since he met his mate's autistic sister, he reckoned he was on the spectrum (even though growing up with a sister of his own on the spectrum didn't seem to get him reckoning the same), and then he got himself assessed straight away. He somehow got a diagnosis of Asperger's, but something makes me think that he lied a lot on the form. And ever since he got the diagnosis (which has only been a year), he's been using it as an excuse for everything, including quitting his job and not working, even though he coped fine with finding and looking for work before.
He's always had a pessimistic image of himself and has been prone to depression since he was a teenager, but that's it. I don't think it was Asperger's, as I've never seen him stim, have any special interests, show anxiety with loud noises or bright lights, have sensory overload or meltdowns or outbursts, display repetitive behaviours, be anxious with change, or have difficulty making and keeping friends. There are other disorders he could have been diagnosed with that would have fitted him more, like depression disorder or even personality disorder or bipolar.


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League_Girl
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29 Jul 2019, 12:54 pm

That is their opinion and I feel that way too. Any doctor that is so quick to give out a diagnoses I am skeptical. A good doctor will look at the symptoms and find the root cause of them.

I wouldn't take it personally if someone expresses that opinion, I feel that is your (general your) insecurity about yourself if you take it as an attack and as them questioning you. Unless they say "I think you got misdiagnosed because autism is over diagnosed" then you can take an issue with it. If you are not sure, you can ask them "Are you saying I don't have it and they just handed it to me like candy?" and that will put them on the spot and they can either clarify what they meant or make them think of what they said about if this was really relevant to something you said when they mentioned a relative of theirs said it's overdiagnosed or they might say they were questioning your autism.

But it may be under diagnosed in adults but overdiagnosed in children. Even my son has that diagnoses in school, it's not a medical diagnoses, it's a school diagnoses. The reason why kids are diagnosed with it more is because it's for funding. Schools get more in funding from the state if they have a student with that diagnoses. That is how it is here in the state of Oregon according to my cousin. Schools want to help students so they give them an autism diagnoses and find how their behavior fits the criteria so they get funding from the state for it to help them in school. They didn't have this when I was a kid so they tried to say I had a behavior disorder so that was how I got diagnosed with an ASD by a medical professional. Then they tried to use my ASD against me to justify their discrimination on me with their double standards.

So I wonder if the increase in autism diagnoses is due to kids being diagnosed with it by the school. It's not a real diagnoses because it won't go on their medical record but they are still counting it towards how many are getting diagnosed with it these days. Now it's 1 in 66 I believe.


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League_Girl
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29 Jul 2019, 1:04 pm

Joe90 wrote:

My brother is a perfect example of overdiagnosing. He was diagnosed at age 30, because ever since he met his mate's autistic sister, he reckoned he was on the spectrum (even though growing up with a sister of his own on the spectrum didn't seem to get him reckoning the same), and then he got himself assessed straight away. He somehow got a diagnosis of Asperger's, but something makes me think that he lied a lot on the form. And ever since he got the diagnosis (which has only been a year), he's been using it as an excuse for everything, including quitting his job and not working, even though he coped fine with finding and looking for work before.
He's always had a pessimistic image of himself and has been prone to depression since he was a teenager, but that's it. I don't think it was Asperger's, as I've never seen him stim, have any special interests, show anxiety with loud noises or bright lights, have sensory overload or meltdowns or outbursts, display repetitive behaviours, be anxious with change, or have difficulty making and keeping friends. There are other disorders he could have been diagnosed with that would have fitted him more, like depression disorder or even personality disorder or bipolar.


It seems liked you were accepting of your brother's diagnoses and were actually surprised but now you decided to think he doesn't have it?

I'm just curious here.


But I do agree that too many people use their disabilities as an excuse and that there are many people out there that do try to get diagnosed with something so they can use as an excuse. I know genuine people with disabilities try to find ways to over come their roadblocks and obstacles. I am not saying there are no people out there with real disabilities that try to use it as an excuse. This would be more common in kids IMO so I can understand why mine didn't tell me I had a disability and me and my husband won't tell our son he has one too that is undiagnosed. We all suspect he has a learning disability and ADHD but none of us are pushing for a diagnoses because he gets plenty of help in school and has an IEP. We know he has anxiety. He is aware of anxiety too but never uses it as an excuse. But someone out there will try to say they have anxiety and try and get diagnosed with it just so they can use it as an excuse. They act like having a mental illness is trendy. People out there that do go for a diagnoses is because they want help so they get better, not so they have an excuse. That is the difference between a genuine person and someone who just wants an excuse.


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Joe90
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29 Jul 2019, 3:36 pm

League_Girl wrote:
Joe90 wrote:

My brother is a perfect example of overdiagnosing. He was diagnosed at age 30, because ever since he met his mate's autistic sister, he reckoned he was on the spectrum (even though growing up with a sister of his own on the spectrum didn't seem to get him reckoning the same), and then he got himself assessed straight away. He somehow got a diagnosis of Asperger's, but something makes me think that he lied a lot on the form. And ever since he got the diagnosis (which has only been a year), he's been using it as an excuse for everything, including quitting his job and not working, even though he coped fine with finding and looking for work before.
He's always had a pessimistic image of himself and has been prone to depression since he was a teenager, but that's it. I don't think it was Asperger's, as I've never seen him stim, have any special interests, show anxiety with loud noises or bright lights, have sensory overload or meltdowns or outbursts, display repetitive behaviours, be anxious with change, or have difficulty making and keeping friends. There are other disorders he could have been diagnosed with that would have fitted him more, like depression disorder or even personality disorder or bipolar.


It seems liked you were accepting of your brother's diagnoses and were actually surprised but now you decided to think he doesn't have it?

I'm just curious here.


But I do agree that too many people use their disabilities as an excuse and that there are many people out there that do try to get diagnosed with something so they can use as an excuse. I know genuine people with disabilities try to find ways to over come their roadblocks and obstacles. I am not saying there are no people out there with real disabilities that try to use it as an excuse. This would be more common in kids IMO so I can understand why mine didn't tell me I had a disability and me and my husband won't tell our son he has one too that is undiagnosed. We all suspect he has a learning disability and ADHD but none of us are pushing for a diagnoses because he gets plenty of help in school and has an IEP. We know he has anxiety. He is aware of anxiety too but never uses it as an excuse. But someone out there will try to say they have anxiety and try and get diagnosed with it just so they can use it as an excuse. They act like having a mental illness is trendy. People out there that do go for a diagnoses is because they want help so they get better, not so they have an excuse. That is the difference between a genuine person and someone who just wants an excuse.


Well, yeah I suppose you have a point there about me accepting his diagnosis in other posts. But I just mention it in a vague sort of way. I still am skeptical of it because Asperger's just doesn't quite fit him in my opinion.

I was diagnosed at 8 and I was told right away, but I still never, ever used it as an excuse for anything. In fact I'm the very opposite; I can be in denial and I try to think of other reasons why I get socially rejected by my peers instead of just thinking it could be due to my social awkwardness.

But it seems that my brother has purposefully got a diagnosis of Asperger's to give himself an excuse to avoid responsibilities or something. He's a lovely person but lately he seems to see his whole life through the Asperger's lens and has become rather wrapped up in himself.


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League_Girl
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29 Jul 2019, 3:55 pm

My question Joe90 is do you feel Asperger's fits you?


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Joe90
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29 Jul 2019, 5:08 pm

League_Girl wrote:
My question Joe90 is do you feel Asperger's fits you?


That's a huge question. I seemed to have a lot of the ASD symptoms as a child, but they came out in subtle or complex ways, in other words, not the usual or stereotypical way. I feared loud sudden noises, particularly the school bell, but that was the ONLY noise at school I disliked but felt too embarrassed to tell anyone. So I went around with my hands over my ears when I knew the bell was due to ring, but the teachers thought I was covering my ears because of the children talking loudly, which wasn't the case at all. Also I'd stand away from any bells, which sometimes made it look like I was deliberately isolating myself from the other children, but that wasn't the case either. I wanted to be with the other children.

But anyway I won't go into detail of everything because I think I have derailed this thread enough. I do have ADHD and anxiety as well, which also play a big part in the way I am. Sometimes I feel like I can't relate to Aspies here, but sometimes I can. But I can't say that Asperger's doesn't fit me, because I've spent the last 9 years on an autism forum posting about my Aspie life, so it will look a bit weird. I'd like to say I don't fit the Asperger's criteria, especially nowadays where they are trying to take away Asperger's and functioning labels and just lump everybody with autism, that makes me feel like I am no longer qualified for an autism spectrum disorder, because when you look up autism the symptoms don't describe me at all.


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29 Jul 2019, 6:37 pm

Warning Rant, I have been triggered
A few years back it used to be a common opinion on this forum that Autism particularly Aspergers was over-diagnosed, and that many claiming to be on the spectrum had a factitious disorder, were deliberately faking it or unwittingly faking themselves because they wanted an excuse for bad behaviors, because in the view of many in the Aspergers is over-diagnosed camp Aspergers/Aspergers is a trendy fad to have.

In 2014 there were at times were 3 and 4 simultaneous threads in this vain going on. I and many older members found it all discouraging, infuriating, and offensive. Older members were being told that if they were really autistic somebody would have picked it up long before middle age. Many of us were not diagnosed until middle age because only the most severe autism was recognized when we were growing up. For most of our lives we were accused of the things we were now being accused of on what was supposed to be a support forum. Many members had professionals regularly not believe them as well as family and friends.

I find the notion that Autism is a trendy thing to have bizarre. Trendy? Autism is a popular online insult, our employment numbers are horrible, we have high rates of co occurring mental illness, a horrific suicide ideation rate. I would think that anybody that takes an autism identity to be cool like Sheldon and The Good Doctor would be quickly dissuaded from that notion.



I am happy that era of Wrong Planet is long gone. Enough of the rant, back on topic. Any condition like autism that is subjective is going to be inconsistently diagnosed. A lot will depend on location, what clinician is seen and so on. I am constantly reading about the push to diagnose people younger and younger so they can get ABA. I can see where this can lead to over diagnosis in the youngest children.


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30 Jul 2019, 3:39 am

I also think that a widespread belief in "early intervention" leads to overdiagnosing autism in the youngest children - or maybe overintervention in cases where some children are on the spectrum but they would live allright as BAP without any diagnosis.
The things are totally different for older people, especially adults who managed to somehow steer their lives until they burned out. In these cases, misdiagnoses of other mental conditions are still painfully common (been there, it's a hell) and "you can't be autistic because you can <do something>" is still quite typical response, even among professionals.


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30 Jul 2019, 5:40 am

I think with anything that has been broadened as to who fits it, be it autism or bipolar etc, there's a tendency for some to shout "Overdiagnosis !" . Before the expansion of those diagnoses though many were denied help they needed. At what level do you set the criteria for a person fitting something to avoid either over or under diagnosing ? It's an extremely hard one to get exactly right.


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30 Jul 2019, 6:31 am

Considering what I have had to go through to try and get diagnosed I find it very hard to believe it is anything other than massively underdiagnosed. It took me years to find someone who actually got back to me and I almost pulled my hair out trying to set up an appointment. Long story short they are booking over a year in advance and the cost is almost $2500 (for one days work!! !). Luckily I have insurance that will cover much of the cost but I will still have to pay quite a bit to tell me something I likely already know.

magz wrote:
"you can't be autistic because you can <do something>" is still quite typical response, even among professionals.
The very first time I met with a psychiatrist that is exactly what he told me. "You can't have Asburjers because you have stable, full time employment and a girlfriend". Never mind I was (and have been) underemployed (7 years and counting looking for a relevant job despite superior credentials) and that "girlfriend" was someone no healthy person would have let anyone near them.

Having said all that, the same (ex) Girlfriend worked at a Daycare for a brief period and told me that one of the babies was diagnosed with Autism. How in the [email protected]#$ can you diagnose a baby??