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ASPartOfMe
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13 Jan 2020, 3:23 am

There are a small percentage of children who are diagnosed with ASD then "lose" their autism diagnosis when they no longer show enough symptoms to meet the diagnostic criteria. While they often still have issues sometimes they are described as "recovered" from autism.

The Unrecovered - Thinking Person's Guide to Autism

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This is the reaction I wrote in response to the article The Kids Who Beat Autism, originally published in the New York Times Magazine in 2014. While I have no doubt that the parents and therapists profiled believe they have these kids’ best interests at heart, I was—and am—angry and frustrated at the celebration at their “recovery” on the part of people who are not the ones who are actually going to bear the consequences for the rest of their lives.

I’m sad for the kids who are.

The parents, teachers, and therapists and researchers without a clue who celebrate “recovery” because they still wrongfully define autism as a fixed set of permanent inabilities, rather than see autistic people as complete human beings, intrinsically capable of learning and growth—

Are not the people doing the work of passing, and are not going to be the ones to find out first-hand just how long it isn’t actually sustainable.
Are not the people who get told we’re too articulate to be autistic but have to ration our hours of speech per day.
Are not the developmentally disabled women who suffer a sexual abuse rate of around 90%, no thanks to the compliance training that teaches us that allowing others to control our bodies is desirable behavior.
Are not the kids pulling themselves through school without disability accommodations.
Are not the kids getting their supports and accommodations pulled out from under them when they lose a diagnosis.
Are not the kids getting chided and belittled because their challenges and oddity are now seen as choices of defiance or misbehavior.
Are not the people being lied to about who they are.
Are not the people who are going to wake up one day 20 years from now with no idea who they are or how they got there.
Are not the people who will spend a year and a half having a meltdown with no idea of what’s happening or why.
Are not the kids being taught that accepting yourself as you really are and as you really work, would be the worst possible thing.
Or that the “best outcome” possible for you is to spend the rest of your life pretending to be something you’re not. Even if that means leaving you with anxiety, depression, or obsessive-compulsive disorder.
Are not the people who are going to have to re-learn where they belong in space and time and how to live there.
They will not be the people giving these kids a community and a support system years from now. They will not be the ones who know what to do when they start having breakdowns and burnouts.

They will not be the ones supporting their kids in learning self-acceptance when all their passing skills fail because they are actually incompatible with functioning in the long term.

We will.

They will not be the people there to pick up the pieces.

We will.

There is, indeed, hope for the kids featured in this article, for joy and authenticity. This article could’ve come with a spoiler alert; autistic adults know the end of this story. We know it many times over.

It’s just not that these kids live out their lives as non-autistic people.


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carlos55
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13 Jan 2020, 8:56 am

Autism is diagnosed within a scoring range that can fluctuate depending on stress levels.

Also the older a person is the less opportunity for socialising and human interaction outside the workplace ( presuming someone has a job)

I believe the "use it or loose it" senario here where boarderline autistic people simply loose these skills as they get older that pushes them back on the spectrum.



vermontsavant
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13 Jan 2020, 9:04 am

If someone is undiagnosed with autism,then likely the autism diagnosis was invalid in the first place.Autism is like adhd,over diagnosed along with ptsd too.

When someone loses a diagnosis they were likely in the catagory of those who were victims of over diagnosis by professionals.You see this often in autism,ADHD and PTSD.

NO ONE recovers from autism,it does not happen period!! !


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ASPartOfMe
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13 Jan 2020, 10:48 am

Children become not being “impaired” enough for a diagnosis through maturing or training(learning how to please their therapists) or both or as mentioned they never were autistic in the first place.

As Carlos noted the stresses of late teenage and adult life might make people impaired enough to be diagnosed again. As far as I know none of these few studies of children who lose their diagnoses has followed them into adulthood because these studies have not been going on long enough. Therefore it is presumptuous to say they have been “recovered” when they might be in “remission”. They have “lost” their autism diagnosis but they probably are still autistic.


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vermontsavant
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13 Jan 2020, 12:19 pm

ASPartOfMe wrote:
Children become not being “impaired” enough for a diagnosis through maturing or training(learning how to please their therapists) or both or as mentioned they never were autistic in the first place.

As Carlos noted the stresses of late teenage and adult life might make people impaired enough to be diagnosed again. As far as I know none of these few studies of children who lose their diagnoses has followed them into adulthood because these studies have not been going on long enough. Therefore it is presumptuous to say they have been “recovered” when they might be in “remission”. They have “lost” their autism diagnosis but they probably are still autistic.
It's true stress can agrivate autism in the teens an early twenties but if one looses a diagnosis they were likely a victim of professional over diagnosis and were not autistic in the first place,over DX is quite common.


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13 Jan 2020, 12:52 pm

A lot may depend on who is doing the assessing , and how the person is over a certain time period . I don't think symptoms will be at a uniformly consistent level .

With regards to the first part I was re-diagnosed with a personality disorder in 2005 on seeing a new pdoc . My dx had been schizoaffective mixed type . This is the pdoc that did so . https://www.eventfinda.co.nz/2019/is-th ... ston-north

In 2017 I moved . In 2018 I saw a pdoc where I live now . He said the most likely dxes were ASD and schizophrenia .
A more thorough check of my psych notes had him change the dx to schizoaffective this year .

That is not to say ASD and schizoaffective are the same thing ,but to point out that professionals may come to differing conclusions as to what the evidence means - be it a mental illness or ASD .


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ASPartOfMe
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13 Jan 2020, 2:57 pm

vermontsavant wrote:
ASPartOfMe wrote:
Children become not being “impaired” enough for a diagnosis through maturing or training(learning how to please their therapists) or both or as mentioned they never were autistic in the first place.

As Carlos noted the stresses of late teenage and adult life might make people impaired enough to be diagnosed again. As far as I know none of these few studies of children who lose their diagnoses has followed them into adulthood because these studies have not been going on long enough. Therefore it is presumptuous to say they have been “recovered” when they might be in “remission”. They have “lost” their autism diagnosis but they probably are still autistic.
It's true stress can agrivate autism in the teens an early twenties but if one looses a diagnosis they were likely a victim of professional over diagnosis and were not autistic in the first place,over DX is quite common.

Related to stress is that there are more responsibilities and expectations when one becomes an adult.

Since most of these kids do have remaining issues "misdiagnosed" rather than "over diagnosed" is probably a somewhat more accurate description of what might have happened to them.

I do think the issue of over diagnoses traditionally has been much greater than actual wrong diagnoses. With the massive push to diagnose infants and toddlers to get them into ABA the massive over diagnoses of autism people have been claiming for years might actually become a reality.

Regardless of the reality the perception of widespread Autism over diagnosis is an extremely harmful phenomenon. Most of all to the kids and their families that are wrongly diagnosed but also to those older who suspect or have been diagnosed. There have been so many posts here over the years who by people have been diagnosed who doubt their diagnosis, who wonder if they faked both themselves and the clinician. This negates the money, time, and effort that went into getting diagnosed, they can't move forward, only backwards. I always wonder how many actually autistic people that get a suspicion never proceed after continually reading about over diagnosis and Autism wannabees?


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vermontsavant
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13 Jan 2020, 3:30 pm

ASPartOfMe wrote:

Related to stress is that there are more responsibilities and expectations when one becomes an adult.

Since most of these kids do have remaining issues "misdiagnosed" rather than "over diagnosed" is probably a somewhat more accurate description of what might have happened to them.

I do think the issue of over diagnoses traditionally has been much greater than actual wrong diagnoses. With the massive push to diagnose infants and toddlers to get them into ABA the massive over diagnoses of autism people have been claiming for years might actually become a reality.

Regardless of the reality the perception of widespread Autism over diagnosis is an extremely harmful phenomenon. Most of all to the kids and their families that are wrongly diagnosed but also to those older who suspect or have been diagnosed. There have been so many posts here over the years who by people have been diagnosed who doubt their diagnosis, who wonder if they faked both themselves and the clinician. This negates the money, time, and effort that went into getting diagnosed, they can't move forward, only backwards. I always wonder how many actually autistic people that get a suspicion never proceed after continually reading about over diagnosis and Autism wannabees?[/quote]

Diagnosis is just a judgement call by a professional anyway,who is really to say what is or is not a legit DX,autism,ADHD and PTSD are over diagnosed but many people are also misdiagnosed.Vermont doctors would only give my ex-wife a seasonal depression DX then Massachusetts doctors gave her borderline personality,which honestly I think thats true.

Many people may be on the "Broad autism phenotype" some of those people get a ASD DX others do not,it depends on what doctor you see,it's all kinda murky water but I do believe if ones symtoms go away completely then they were misdiagnosed or were the victim of over diagnosis,people DON'T recover from autism period!! !


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ASPartOfMe
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13 Jan 2020, 5:21 pm

ASPartOfMe wrote:
Related to stress is that there are more responsibilities and expectations when one becomes an adult.

Since most of these kids do have remaining issues "misdiagnosed" rather than "over diagnosed" is probably a somewhat more accurate description of what might have happened to them.

I do think the issue of over diagnoses traditionally has been much greater than actual wrong diagnoses. With the massive push to diagnose infants and toddlers to get them into ABA the massive over diagnoses of autism people have been claiming for years might actually become a reality.

Regardless of the reality the perception of widespread Autism over diagnosis is an extremely harmful phenomenon. Most of all to the kids and their families that are wrongly diagnosed but also to those older who suspect or have been diagnosed. There have been so many posts here over the years who by people have been diagnosed who doubt their diagnosis, who wonder if they faked both themselves and the clinician. This negates the money, time, and effort that went into getting diagnosed, they can't move forward, only backwards. I always wonder how many actually autistic people that get a suspicion never proceed after continually reading about over diagnosis and Autism wannabees?

vermontsavant wrote:
Diagnosis is just a judgement call by a professional anyway,who is really to say what is or is not a legit DX,autism,ADHD and PTSD are over diagnosed but many people are also misdiagnosed.Vermont doctors would only give my ex-wife a seasonal depression DX then Massachusetts doctors gave her borderline personality,which honestly I think thats true.

Many people may be on the "Broad autism phenotype" some of those people get a ASD DX others do not,it depends on what doctor you see,it's all kinda murky water but I do believe if ones symtoms go away completely then they were misdiagnosed or were the victim of over diagnosis,people DON'T recover from autism period!! !

"Going away completely is generally not happening with these kids.
We need to stop perpetuating the myth that children grow out of autism
Quote:
Autism is a lifelong condition. However, a small number of studies suggest a minority of children may "lose" their autism diagnosis.

A 2011 analysis of American national survey data found 13% of children diagnosed with autism (187 of the 1,576 whose parents responded to the question) had "lost" their diagnosis.

The most common reason was "new information," such as being diagnosed with another developmental, learning, emotional, or mental health condition.

Only 21% of the 187 parents reported their child had lost their diagnosis due to treatment or maturation; and only 4% (eight children) had a doctor or other professional confirm the child did not have ASD and did not have any other developmental, learning, emotional, or mental health condition.

A recent study in the Journal of Child Neurology examined the records of 569 children diagnosed with autism between 2003 and 2013. It found 7% (38 of the 569) no longer met the diagnostic criteria.

However, most were diagnosed with another behavior disorder (such as attention-deficit hyperactivity disorder) or a mental health condition (such as anxiety disorder).

Just three children out of 569 did not "warrant" any alternative diagnosis.

The few studies that report on children who no longer met the criteria for a diagnosis of either autism or another condition are typically small-scale observational studies.

In 2014, for example, US psychiatry researchers studied 34 people aged eight to 21 years who were diagnosed with autism before the age of five but no longer met the criteria for a diagnosis. This was defined as the "optimal outcome."

The researchers found the "optimal outcome" group did not differ from "typically developing" children on socialization, communication, most language sub-scales and only three had below-average scores on face recognition.

So, a very very small number of children lose their diagnosis and appear to function normally. But these small-scale studies don't have the capacity to differentiate between "growing out of" and "learning to mask" autism-related behaviors.

One of the unexpected findings of the 2014 study of people who lost their autism diagnosis is they tended to have high IQs. The researchers suggest high levels of cognition allowed this group of autistic people to identify and compensate for their social differences.


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vermontsavant
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13 Jan 2020, 9:11 pm

ASPartOfMe wrote:
ASPartOfMe wrote:
Related to stress is that there are more responsibilities and expectations when one becomes an adult.

Since most of these kids do have remaining issues "misdiagnosed" rather than "over diagnosed" is probably a somewhat more accurate description of what might have happened to them.

I do think the issue of over diagnoses traditionally has been much greater than actual wrong diagnoses. With the massive push to diagnose infants and toddlers to get them into ABA the massive over diagnoses of autism people have been claiming for years might actually become a reality.

Regardless of the reality the perception of widespread Autism over diagnosis is an extremely harmful phenomenon. Most of all to the kids and their families that are wrongly diagnosed but also to those older who suspect or have been diagnosed. There have been so many posts here over the years who by people have been diagnosed who doubt their diagnosis, who wonder if they faked both themselves and the clinician. This negates the money, time, and effort that went into getting diagnosed, they can't move forward, only backwards. I always wonder how many actually autistic people that get a suspicion never proceed after continually reading about over diagnosis and Autism wannabees?

vermontsavant wrote:
Diagnosis is just a judgement call by a professional anyway,who is really to say what is or is not a legit DX,autism,ADHD and PTSD are over diagnosed but many people are also misdiagnosed.Vermont doctors would only give my ex-wife a seasonal depression DX then Massachusetts doctors gave her borderline personality,which honestly I think thats true.

Many people may be on the "Broad autism phenotype" some of those people get a ASD DX others do not,it depends on what doctor you see,it's all kinda murky water but I do believe if ones symtoms go away completely then they were misdiagnosed or were the victim of over diagnosis,people DON'T recover from autism period!! !

"Going away completely is generally not happening with these kids.
We need to stop perpetuating the myth that children grow out of autism
Quote:
Autism is a lifelong condition. However, a small number of studies suggest a minority of children may "lose" their autism diagnosis.

A 2011 analysis of American national survey data found 13% of children diagnosed with autism (187 of the 1,576 whose parents responded to the question) had "lost" their diagnosis.

The most common reason was "new information," such as being diagnosed with another developmental, learning, emotional, or mental health condition.

Only 21% of the 187 parents reported their child had lost their diagnosis due to treatment or maturation; and only 4% (eight children) had a doctor or other professional confirm the child did not have ASD and did not have any other developmental, learning, emotional, or mental health condition.

A recent study in the Journal of Child Neurology examined the records of 569 children diagnosed with autism between 2003 and 2013. It found 7% (38 of the 569) no longer met the diagnostic criteria.

However, most were diagnosed with another behavior disorder (such as attention-deficit hyperactivity disorder) or a mental health condition (such as anxiety disorder).

Just three children out of 569 did not "warrant" any alternative diagnosis.

The few studies that report on children who no longer met the criteria for a diagnosis of either autism or another condition are typically small-scale observational studies.

In 2014, for example, US psychiatry researchers studied 34 people aged eight to 21 years who were diagnosed with autism before the age of five but no longer met the criteria for a diagnosis. This was defined as the "optimal outcome."

The researchers found the "optimal outcome" group did not differ from "typically developing" children on socialization, communication, most language sub-scales and only three had below-average scores on face recognition.

So, a very very small number of children lose their diagnosis and appear to function normally. But these small-scale studies don't have the capacity to differentiate between "growing out of" and "learning to mask" autism-related behaviors.

One of the unexpected findings of the 2014 study of people who lost their autism diagnosis is they tended to have high IQs. The researchers suggest high levels of cognition allowed this group of autistic people to identify and compensate for their social differences.


That's what I'm saying,autism symptoms never go away.If someone is claiming they do,in that case it was a misdiagnosis.I never heard of autism symptoms going away.


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13 Jan 2020, 9:51 pm

Oh, yes, I "lost" my Autism when I was in a lovely supportive work environment, some medical issues pushed me to suppress (depress) myself near completely, and I had no children. When circumstances changed, Autism "came back". Funny how that happens.

My AS-like BFF made her life so very small that she "lost" her likely Autism. I wish she would expand her life, but then she'd have to face that which has "gone away" (or "never was").



carlos55
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14 Jan 2020, 3:37 pm

I found this article from spectrum news that goes into this, the picture at the top speaks a thousand words to the depressing reality of autism & the future of those with it for the majority & why they would want to be cured:

https://www.spectrumnews.org/features/d ... sm-behind/



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14 Jan 2020, 7:01 pm

^^
"Fein and her colleagues found that when performing a language task, young people in the optimal outcome group have patterns of neural activity in some brain regions that more closely resemble those of their peers with autism than the patterns of typically developing individuals. The finding doesn’t negate the idea that those children’s autism has faded, Fein says: After all, the disorder is diagnosed based on clinical observations of behavior, not based on brain scans. But, she says, “the brain functioning is not normalized. It looks like they might be compensating.”"

My daughter and I can "hide" our autism very well, but it's an a cost. We try to explain to others how HARD it is too talk but their response is: "you talk fine." My ASD coach says in our case it's the blessing and curse of high ability. We are wound up so tight from compensating (masking), but it looks really good from the outside: energetic, verbose, optimistic ---- just watch out for the private rebounds. Having been one, I can tell you that certain 10-year-olds already knows how to hide them, even from their parents.



ASPartOfMe
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15 Jan 2020, 3:20 am

carlos55 wrote:
I found this article from spectrum news that goes into this, the picture at the top speaks a thousand words to the depressing reality of autism & the future of those with it for the majority & why they would want to be cured:

https://www.spectrumnews.org/features/d ... sm-behind/

The NT life is usually far from the angelic picture displayed in the picture on top of the article. The picture is probably realistic in the sense that many frustrated autistics are longing for the angelic life they picture NT’s living.


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