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eyelessshiver
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14 Sep 2020, 12:48 pm

It just isn't this black and white. Psychology doesn't work that way. Autism is vague, it's not the result of concrete science. People have their beliefs and biases, but no one is necessarily right or wrong. It comes down to opinion.

Someone diagnoses as autistic at one point in time, but not later on. Did they improve (is it still there), or did it go away? Why or why not? How can you know? What are all the relevant variables and factors here? Did they really have it in the first place? Why or why not? How can you know? What's the underlying logic behind the belief? Etc.

How much is semantics? How much is language? Does "recovered" mean "learned coping skills"? Does "recovered" mean "cured"? Does "autistic" inherently mean "can't recover"? To some people it might, to others it might not. Etc.


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Edna3362
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14 Sep 2020, 1:09 pm

The issues of behavioral based diagnosis. :P


No biomarkers, no concrete ideas, no nothing.

Many conditions and states can mimic autism and be mistaken as autism.

Not neurology or innate -- but trauma, actual treatable diseases, some imbalances fixable by lifestyle changes, certain or coincided developmental trajectories and memory issues (likely induced with deprivation) that 'seem' autism, or forbid 'personality disorders'.
Heck, inflammatory and/or anxiety based conditions, mistaken for autism.

Not that any of these are mutually exclusive from autism.


At the same time there may actually be a real autism just as consistent somewhere, just each expressed it differently and some ends up with different labels because of their behavioral traits.


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FranzOren
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14 Sep 2020, 1:16 pm

I think they should start doing genetic mutations, deficiencies to environmental or Schizophrenia test for Autism, such as doing psychical sensory tests, mask illusion and even other communication test than just looking for behaviors it self



FranzOren
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14 Sep 2020, 1:17 pm

Even if symptoms of Autism is now gone, I would still consider them developmentally delayed, because they had traits of ASD for more than four or six months and they had it for so many years, even if they lost their diagnosis



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02 Oct 2020, 12:24 pm

I have to point out the other side of the coin here: many advocates seem to act like receiving ASD diagnoses are always empowering and uplifting experiences.

Sometimes I wonder if this has anything to do with age at diagnosis. Not all Autism Activists and advocates were diagnosed as adults, but many seemed to be. For them, they experienced uncertainty and anxiety during their youth and the diagnosis gave them a community and something to hold on to. Maybe they imagined that being diagnosed at a younger age would mean that the empowerment that they experienced as adults upon being diagnosed would have benefited them as children and adolescents.

I don't think we should see growing up with an ASD diagnosis through completely rose tinted lenses, though.

I was diagnosed with Asperger's syndrome at age ten. I was put in special ed classes that designated me as different and impaired straight off the bat, and didn't actually help me organize my work or succeed academically. I was criticized for making mistakes that all students made and praised for doing the bare minimum of what other students did. I internalized the idea that nothing was expected of me. I was told that I wouldn't be able to go to a mainstream school, would never be able to attend college by myself successfully, and would never succeed in life without serious coddling from disability services.

I've been accused in my adult life of distancing myself from the term "disabled", but you know what? It's almost never been empowering for me. It has almost always been degrading. I still struggle, but I always have to weigh the pros and cons of seeing myself through the ASD diagnosis or asking for help from disability services, because seeing myself through that label in the past was not always beneficial to me or my self-esteem. I very much relate to the idea of wanting to "recover" from Autism. At the very least, I think it would be good to see "ASD" behaviors as plastic and changeable, and not completely define ourselves by that label.

It's important that we change the way that "disabled" children and adolescents are treated, and I am all for disability activism. But we should also remember that "recovery" from severe symptoms isn't always a bad thing or something that should be scoffed at, and that some people do not have a positive relationship with the label.

John Elder Robison had a good article that spoke to the diversity of needs and desires amongst those with an AS diagnosis, and did mention that many young people (like me) who grew up with the label have ambivalent relationships to it, and don't necessarily view their experience being labeled "Autistic" as empowering or positive.

[url]
https://www.psychologytoday.com/us/blog ... odiversity[/url]

Quote:
Teens with lower support needs but without striking intellectual exceptionalities make up the largest part of the population. They are the closest thing to an “average person” in this community and as such, often reject ongoing disability supports. They may feel special ed in school was degrading and want nothing to do with it in adulthood. They may just want to leave all their labels behind and go into the world as a “regular person.” Those people are not embracing neurodiversity so much as they are trying to reject autism and all diagnostic labels. Some of them succeed; many others crash and present a new set of support challenges.


It appears that many people on the spectrum share my experiences and attitude towards the diagnosis. Some of them manage to assimilate into the NT population and leave the label behind, many do not. How do we listen to those people and help them? We don't want to make anyone feel as though they are limited by the label, but also provide them with support if they need it.


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ASPartOfMe
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02 Oct 2020, 3:00 pm

Whale_Tuune wrote:
I have to point out the other side of the coin here: many advocates seem to act like receiving ASD diagnoses are always empowering and uplifting experiences.

Sometimes I wonder if this has anything to do with age at diagnosis. Not all Autism Activists and advocates were diagnosed as adults, but many seemed to be. For them, they experienced uncertainty and anxiety during their youth and the diagnosis gave them a community and something to hold on to. Maybe they imagined that being diagnosed at a younger age would mean that the empowerment that they experienced as adults upon being diagnosed would have benefited them as children and adolescents.

I don't think we should see growing up with an ASD diagnosis through completely rose tinted lenses, though.

I was diagnosed with Asperger's syndrome at age ten. I was put in special ed classes that designated me as different and impaired straight off the bat, and didn't actually help me organize my work or succeed academically. I was criticized for making mistakes that all students made and praised for doing the bare minimum of what other students did. I internalized the idea that nothing was expected of me. I was told that I wouldn't be able to go to a mainstream school, would never be able to attend college by myself successfully, and would never succeed in life without serious coddling from disability services.

I've been accused in my adult life of distancing myself from the term "disabled", but you know what? It's almost never been empowering for me. It has almost always been degrading. I still struggle, but I always have to weigh the pros and cons of seeing myself through the ASD diagnosis or asking for help from disability services, because seeing myself through that label in the past was not always beneficial to me or my self-esteem. I very much relate to the idea of wanting to "recover" from Autism. At the very least, I think it would be good to see "ASD" behaviors as plastic and changeable, and not completely define ourselves by that label.

It's important that we change the way that "disabled" children and adolescents are treated, and I am all for disability activism. But we should also remember that "recovery" from severe symptoms isn't always a bad thing or something that should be scoffed at, and that some people do not have a positive relationship with the label.

John Elder Robison had a good article that spoke to the diversity of needs and desires amongst those with an AS diagnosis, and did mention that many young people (like me) who grew up with the label have ambivalent relationships to it, and don't necessarily view their experience being labeled "Autistic" as empowering or positive.

[url]
https://www.psychologytoday.com/us/blog ... odiversity[/url]

Quote:
Teens with lower support needs but without striking intellectual exceptionalities make up the largest part of the population. They are the closest thing to an “average person” in this community and as such, often reject ongoing disability supports. They may feel special ed in school was degrading and want nothing to do with it in adulthood. They may just want to leave all their labels behind and go into the world as a “regular person.” Those people are not embracing neurodiversity so much as they are trying to reject autism and all diagnostic labels. Some of them succeed; many others crash and present a new set of support challenges.


It appears that many people on the spectrum share my experiences and attitude towards the diagnosis. Some of them manage to assimilate into the NT population and leave the label behind, many do not. How do we listen to those people and help them? We don't want to make anyone feel as though they are limited by the label, but also provide them with support if they need it.


The topic of would it have been better to have been diagnosed when we were young often comes up among us older autistics. Nearly all agree that us and everybody else not knowing caused significant problems. Most agree that the diagnoses/explanation was a relief. It made us judge ourselves less harshly. Some of us of are bitter or wistful of what could have been. Others feel that the combination of free range parenting and no label telling us and our parents what we can’t do made us tougher and more skilled people.

I lean towered the latter. I am glad I was not diagnosed back then because I would have been institutionalized and not heard from again. I also do not think I could handle knowing I was autistic today. I was not mature enough to handle the label in my teens. 25-40 hours a week of ABA I believe would drive me insane.


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02 Oct 2020, 5:20 pm

Young age at diagnosis really can play a factor. I think we need to focus reform efforts on the special ed system itself. What kids with specific problems aren't being reached? What are the costs and benefits of the label? How do we make assistance available without stigmatizing kids for being "special needs" or insinuating to children not to expect anything of themselves?

A lot of people in the system seemed to have good intentions, but did not have the perspective or resources to do much good. Many of them got caught up in a game of seeing us through the most condescending lens possible.


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03 Oct 2020, 5:33 am

Many kids diagnosed today are below boarderline ASD.

They fall just below the threshold but are labelled ASD anyway so they get the extra help, that may explain things too.

Autism in kids is a CARS score, 30 & above is autism, 37 & above is severe autism.



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03 Oct 2020, 6:19 am

For me a 27 year delay in getting a dx and competent psychiatric help and support(been receiving MH treatment since late 1973), has meant any hope of fulfilling any potential I might have had has been totally destroyed.

It's now more about maintaining what for many of the high flying types here would be a substandard level of functioning. That functioning, for the last 3 years, being better than it used to be due to good support from my stepdaughter.


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Your neurodiverse (Aspie) score: 133 of 200
Your neurotypical (non-autistic) score: 47 of 200
You are very likely neurodiverse (Aspie)


carlos55
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03 Oct 2020, 8:53 am

firemonkey wrote:
For me a 27 year delay in getting a dx and competent psychiatric help and support(been receiving MH treatment since late 1973), has meant any hope of fulfilling any potential I might have had has been totally destroyed.

It's now more about maintaining what for many of the high flying types here would be a substandard level of functioning. That functioning, for the last 3 years, being better than it used to be due to good support from my stepdaughter.


Hi firemonkey what was your childhood like? did you talk on time? I think you said you were diagnosed late so presumably they just thought schizophrenia? must have been hell with having to stay in hospital as well.



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03 Oct 2020, 9:32 am

carlos55 wrote:
firemonkey wrote:
For me a 27 year delay in getting a dx and competent psychiatric help and support(been receiving MH treatment since late 1973), has meant any hope of fulfilling any potential I might have had has been totally destroyed.

It's now more about maintaining what for many of the high flying types here would be a substandard level of functioning. That functioning, for the last 3 years, being better than it used to be due to good support from my stepdaughter.


Hi firemonkey what was your childhood like? did you talk on time? I think you said you were diagnosed late so presumably they just thought schizophrenia? must have been hell with having to stay in hospital as well.


I think I was fine for milestones like talking. I was very much a loner in childhood' Rarely joined in my younger brother and sister's games. Wasn't that interested.Didn't spontaneously join in play with others. Was physically awkward and clumsy .

c1962 was tested for what we now call cerebral palsy at Gt Ormond street as my 1st school in Bangkok were concerned(My father was working at the British embassy) . Result was negative and no alternatives were explored.

Had no friends during childhood. Just some boys and girls who were nicer to me than others.


The 1st hospitalisation was in May 1975. Soon after a dx of schizophrenia was given. There followed over 40 years of this

https://en.wikipedia.org/wiki/Diagnostic_overshadowing . It took moving to a new area and under a new pdoc to be taken seriously that more was going on than severe mental illness. Once accepted that I could be on the spectrum it took 7months from the 1st psych appointment where it had been mentioned to being given the Asperger's dx.


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Your neurodiverse (Aspie) score: 133 of 200
Your neurotypical (non-autistic) score: 47 of 200
You are very likely neurodiverse (Aspie)


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03 Oct 2020, 11:08 pm

My 2 cents:

I think the use of the term "recovery" is problematic.
It infers the idea of someone having a disorder and then recovering so that they no longer have that disorder.
This is contrary to the prevailing scientific consensus that the basis of autism is a developmental difference in brain neurology, which will still be present throughout one's life.

The issue is that autism is diagnosed not through actual testing of brain neurology but through observation of behavioural traits.
I agree that it may be possible for someone diagnosed with autism in childhood to later lose that diagnosis, through learning to suppress, work around, or compensate for autistic traits so that their behaviour no longer satisfies the criteria.
But to call this "recovery" is misleading and problematic - as it leads to inference of autism being curable.

I have no problem with the alternative terminology "optimal outcome".
By all means, place your child in therapies aiming to achieve an optimal outcome, surely we can all agree on that.
Just don't expect those therapies to cure their autism.



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19 Oct 2020, 9:09 pm

The diagnostic criteria are intrinsically rather fuzzy and arbitrary, to begin with. So, it should be no surprise that there are people who sometimes fall on one side of the line, and sometimes the other, depending on any number of factors, including what mood they happened to be in on the day they were tested.


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08 May 2021, 1:25 pm

I made my own new diagnostic criteria called Oren Franz Syndrome.

What is Oren Franz Syndrome?

Oren Franz Syndrome is a form of Autism were all symptoms of ASD remits late in life with support and therapy and where cases of people lose their ASD diagnosis when they are considered to be completely improved over time after reviving therapy.


Symptoms of Oren Franz Syndrome includes history of:

* Communication delays
* Restricted Interests
* Repetitive behaviors
* May include sensory issues as well

But all of these symptoms remits late in life with support and therapy.


When some people lose Autism diagnosis, they should be re-diagnosed with my new diagnostic criteria.



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08 May 2021, 2:44 pm

I would make the same point as Edna3362 - the diagnosis of autism is predicated on behavioural traits, many of which have changed over time and will doubtless do so again. How autism is diagnosed and conceptualised is influenced by the history of the study - whether current conceptualisations accept and develop those early conceptualisations or reject them, they equally bear the influence of history. All of this is, of course, mediated by the societies in which autism is located and the research priorities that arise out of those societies, in turn affecting our knowledge of what autism is and thence influencing the nature of diagnostic instruments that are created.

The whole narrative around 'autism recovery' smells far too much like the 'curing autism' narrative to me, which I, and undoubtedly a great deal of people here (without generalising) also find horrifically offensive.


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08 May 2021, 6:01 pm

Me too!

I agree!