Re-defining Diagnostic Criteria for Autism?

[Greatshield17]

I'm hearing rumors that the people in charge are seeking to actually re-define the diagnostic criteria for Autism in the DSM-5. For awhile now, I've heard people saying that Autism is being "over-diagnosed" and that level-1 Autistic people aren't really Autistic. I've considered this to be the 2nd greatest threat to the Autistic community after prevention, (I don't believe a "cure" is possible.) as it'll lock level-1 Autistic people out of getting the accommodations they need and leaves them as social outcasts, wondering who they are, and why they think and do the things they do. I've printed out AQ tests incase something like this happens and have been meaning to print out those other tests you people have shared with me as well; I highly recommend that all Autistic people reading this to do the same, so that we can diagnose our children and acquaintances, if the establishment ends up refusing to.

However paradoxically, in some ways things like this are actually almost a good thing, why? Well in the past, people have told themselves that we don't really enjoy being Autistic and that we just tell ourselves we love it to cope with the "misery" of "having" this "horrible disease." Now people think that any Autistic person who, in their eyes, manages too well with things must not really be Autistic because Autism is bad. But by believing that, they actually have to confront us and tell us we're not Autistic and when they do that, they open themselves up to debate where we can fight back and make them see the reality of things. So as bad things might seem with this possible threat, it is also a sign that things, are paradoxically, moving in the right direction.

What are your thoughts on this? Do you know anything about these rumors? Do you have any plans for moving forward? I'm going to be away this Sunday so I won't be back until tomorrow to see and respond to your posts and thoughts, see you then.

 

[Telepath John]

Autism is a blessing. As humanity evolves more and more of us will be autistic. Eventually our authorities on this subject will become aware of the value of this gift.

John

 

[Neonatal RRT]

There are people who have a critical misunderstanding of what it is to be autistic. To some extent, it's not their fault,...they simply have no sense of perception or perspective. Most people have no idea of the rather broad presentation,...I am thinking this is because most of the research, support groups, therapies, and social media is focused upon children,...and the adult population is essentially ignored. Some see the differences between an autistic child and a neurotypical child, and may think their poor little brain is "broken" and that it is a disease that needs a cure. They see a child struggling and therefore, "Autism is a horrible thing" and "Why should a child have to suffer through this?"...their empathy gets the better of them. Most people do not look at someone like an Elon Musk or a Steve Jobs,...giants of innovation,...or the handful of award-winning actors and think "autism",...but as autistics, we all recognize a "brother from a different mother" when we see one,...because we know what to look for.

I am not sure we need to change the DSM-5 criteria. Autism is fairly well-defined within this context, and for an ASD-1/Asperger's individual meeting all the criteria for autism,...even if the symptomatology may be less than an ASD-2 or 3,...and then NOT calling it autism,...it may become quite nebulous unless the symptomatology is further stratified. As such,...knowing how doctors in a room can never agree on anything,...I would find this being the most difficult step. Furthermore, I would also suggest that brain imaging and electroencephalogram (EEG) be part of diagnostic process,...we've learned quite a bit in the past 10-15 years with significantly improved imaging techniques. I have been a proponent of getting the diagnosis out of the psychologist's office and into the neurologist's office,...or perhaps some combination. Although there are "standardized" tests that are a part of the diagnostics of autism, I think a bit more objectivity, more specificity, and less subjectivity is needed.

 

[OkRad]

As resources continue to be depleted by vultures at the top who need a third resort home to sequester themselves in during the next international catastrophe, you will see a lot of this. Why call someone autistic and give them resources when you can just call them lazy or personality disordered and send them on their homeless way? Heck no should they get the resources needed by the fat-arse at the top whose 4 kids need 8 years are Harvard and a jet to get them there.

 

[Neonatal RRT]

As resources continue to be depleted by vultures at the top who need a third resort home to sequester themselves in during the next international catastrophe, you will see a lot of this. Why call someone autistic and give them resources when you can just call them lazy or personality disordered and send them on their homeless way? Heck no should they get the resources needed by the fat-arse at the top whose 4 kids need 8 years are Harvard and a jet to get them there.

In the US, you can get called autistic, and still not be given resources,...usually any sort of mental health coverage. "Ohhhh, yeah, you're over 18,...sorry,...good luck that autism." Yes, ASD-2 and 3's do qualify for some help,...it's horribly inadequate,...but it is there.

Mental health insurance and assistance,...regardless of the diagnosis,...is, as I said, horribly inadequate. You're right, homelessness is a significant problem. The police, which are primarily trained in safety and security issues,...are not trained to appropriately handle mental health issues, as evidenced by several well-publicized cases that ended up in deaths.

In the US, I am not sure anyone is getting rich at the top, like in some countries, but it's just more that funds have been "reappropriated" elsewhere,....like more military equipment for the local police. Why fix the problem when you can give the police a "big hammer" to come down on people when they don't behave the way you want them to.

 

[MyLifeAsAnAspie]

I don't think the criteria for ASD is really being changed. What they are doing is clarifying the social communication part to require all three traits listed:

1. Deficits in social-emotional reciprocity
2. Deficits in nonverbal communicative behaviors used for social interaction
3. Deficits in developing, maintaining, and understanding relationships

Apparently, some were reading this part as only requiring one of the traits. I always thought it was all of the traits though.

However, since it is not out yet we can't be sure this is the only change.

 

[Greatshield17]

There are people who have a critical misunderstanding of what it is to be autistic. To some extent, it's not their fault,...they simply have no sense of perception or perspective. Most people have no idea of the rather broad presentation,...I am thinking this is because most of the research, support groups, therapies, and social media is focused upon children,...and the adult population is essentially ignored. Some see the differences between an autistic child and a neurotypical child, and may think their poor little brain is "broken" and that it is a disease that needs a cure. They see a child struggling and therefore, "Autism is a horrible thing" and "Why should a child have to suffer through this?"...their empathy gets the better of them. Most people do not look at someone like an Elon Musk or a Steve Jobs,...giants of innovation,...or the handful of award-winning actors and think "autism",...but as autistics, we all recognize a "brother from a different mother" when we see one,...because we know what to look for.

I am not sure we need to change the DSM-5 criteria. Autism is fairly well-defined within this context, and for an ASD-1/Asperger's individual meeting all the criteria for autism,...even if the symptomatology may be less than an ASD-2 or 3,...and then NOT calling it autism,...it may become quite nebulous unless the symptomatology is further stratified. As such,...knowing how doctors in a room can never agree on anything,...I would find this being the most difficult step. Furthermore, I would also suggest that brain imaging be part of diagnostic process,...we've learned quite a bit in the past 10-15 years with significantly improved imaging techniques. I have been a proponent of getting the diagnosis out of the psychologist's office and into the neurologist's office,...or perhaps some combination. Although there are "standardized" tests that are a part of the diagnostics of autism, I think a bit more objectivity and less subjectivity is needed.

Well said.

I've been meaning to ask on here, how different is a level-1 Autistic brain from other brains? Both levels 2 &3, and a non-Autistic brain?

 

[Crossbreed]

ASD1 needs to remain recognized, if only as the predispositional condition to the co-morbids that form ASD2 & 3.

 

[Matthias]

I'm hearing rumors that the people in charge are seeking to actually re-define the diagnostic criteria for Autism in the DSM-5... What are your thoughts on this? Do you know anything about these rumors?

I searched online and found a webpage that listed proposed changes for the DSM-6 at Purposed Updates for the DSM-6 and ICD-11 although I'm not sure who is proposing those updates so it may just be one person's opinion.

There are more changes listed for autism than any other condition. A couple examples are a specifier to indicate what form of ABA a child requires and an irritability specifier to determine whether an autistic individual needs anti-psychotic drugs to treat their irritability. I think those proposed changes are terrible. Autistic children who are irritable because they are bullied at school or treated poorly by insensitive or overly critical parents would get the message that their completely normal feelings are invalid and that they need drugs to suppress their emotions because they're psychotic.

Do you have any plans for moving forward?

As far as revisions, I think the criteria should be broadened to include people with autistic traits who currently don't meet the criteria for a diagnosis.

However, if I wrote the new DSM-6, I'd remove every disease label and replace them with individual symptoms or traits. For example, doctors currently ask patients about their symptoms, search for a condition that fits their symptoms (such as major depressive disorder, autism, ADHD, avoidant personality disorder, or social anxiety disorder), tell patients they have a mental disorder based on which condition most closely fits their symptoms, and then focus on treating their "disorder" or "illness" with drugs and therapy.

Instead, I'd have the DSM-6 list individual traits along with potential causes and ways to address them. Therapists would ask, "What issues are adversely affecting you life that you would like me to help you address?" Then, they'd use the DSM-6 to help their patients overcome or cope with the issues they mentioned. The benefits would be:

1. Individualized treatment where therapists and doctors focus on what patients believe is adversely affecting their life (without treating traits that aren't harming anyone) instead of trying to find a disease to treat.

2. Increased cooperation and understanding compared to labeling patients with a mental illness and told they need treatment from the doctor for their disorder.

3. Increased sense of belonging. Telling people they have a mental illness leads to people thinking there is something wrong with them or different about them which causes them to feel more socially isolated. Telling patients that everyone has problems and that they are here to help them with it would help patients feel like they are normal people with problems like everyone else.

 

[Greatshield17]

I searched online and found a webpage that listed proposed changes for the DSM-6 here:
Purposed Updates for the DSM-6 and ICD-11

There are more changes listed for autism than any other condition. A couple examples are a specifier to indicate what form of ABA a child requires and an irritability specifier to determine whether an autistic individual needs anti-psychotic drugs to treat their irritability. I think those proposed changes are terrible. Autistic children who are irritable because they are bullied at school or treated poorly by insensitive or overly critical parents would get the message that their completely normal feelings are invalid and that they need drugs to suppress their emotions because they're psychotic.

Agreed.

 

[Greatshield17]

As far as revisions, I think the criteria should be broadened to include people with autistic traits who currently don't meet the criteria for a diagnosis.

However, if I wrote the new DSM-6, I'd remove every disease label and replace them with individual symptoms or traits. For example, doctors currently ask patients about their symptoms, search for a condition that fits their symptoms (such as major depressive disorder, autism, ADHD, avoidant personality disorder, or social anxiety disorder), tell patients they have a mental disorder based on which condition most closely fits their symptoms, and then focus on treating their "disorder" or "illness" with drugs and therapy.

Instead, I'd have the DSM-6 list individual traits along with potential causes and ways to address them. Therapists would ask, "What issues are adversely affecting you life that you would like me to help you address?" Then, they'd use the DSM-6 to help their patients overcome or cope with the issues they mentioned. The benefits would be:

1. Individualized treatment where therapists and doctors focus on what patients believe is adversely affecting their life (without treating traits that aren't harming anyone) instead of trying to find a disease to treat.

2. Increased cooperation and understanding compared to labeling patients with a mental illness and told they need treatment from the doctor for their disorder.

3. Increased sense of belonging. Telling people they have a mental illness leads to people thinking there is something wrong with them or different about them which causes them to feel more socially isolated. Telling patients that everyone has problems and that they are here to help them with it would help patients feel like they are normal people with problems like everyone else.

Strongly disagree, sorry you cannot try to hide Autism and erase us by reducing us down to our symptoms; Autism doesn't work that, one of the reasons being something that @Neonatal RRT just discussed.

 

[MyLifeAsAnAspie]

Well said.

I've been meaning to ask on here, how different is a level-1 Autistic brain from other brains? Both levels 2 &3, and a non-Autistic brain?

ASD is a very heterogeneous condition and that includes what can be detected in brain imaging (From my layman study). I understand they have not conclusively found any brain characteristic that would show the difference between an NT and the most autistic brain.

I searched online and found a webpage that listed proposed changes for the DSM-6 here:
Purposed Updates for the DSM-6 and ICD-11

I read this page as one persons opinion of what should go in a future DSM-6. There is a revision to the DSM-5 (DSM-5TR) coming out this month:
Updated DSM-5 Text Revisions to Be Released in March | Psychiatric News

 

[Fino]

It sounds a bit like some people just want Asperger's back but under a different name.

 

[Magna]

I still think it's weird that Asperger's was removed. It's like a cruel trick to play on a group that has a very difficult time dealing with change.

 

[Neonatal RRT]

Some people have a hard time with the name Asperger's given the role of Hans Asperger during the 3rd Reich,...they would rather not have that name association. On the other hand, we should remember our history in order to not repeat it,..."cancel culture" can be a bad thing,...we need to remember where we once were and the lessons learned.

 

[Matthias]

I read this page as one persons opinion of what should go in a future DSM-6. There is a revision to the DSM-5 (DSM-5TR) coming out this month:
Updated DSM-5 Text Revisions to Be Released in March | Psychiatric News

I searched for DSM-5-TR and it looks like it will be released on March 18, 2022 and the criteria for ASD will be more restrictive so that people with milder autism will not qualify for a diagnosis.

 

[Neonatal RRT]

Well said.

I've been meaning to ask on here, how different is a level-1 Autistic brain from other brains? Both levels 2 &3, and a non-Autistic brain?

As @MyLifeAsAnAspie has suggested, from an imaging perspective, I am not sure if we can come up with a well-defined conclusion,...primarily because of small sample size during each of these studies. However, if we look at the broader body of evidence from several imaging studies combined, we may be able to come up with some answers. For example,...differences can be found looking at grey/white matter volumes and patterns. More specifically, "Aspies" tend to differ from "high-functioning autism" (outdated terminology) in that Asperger's variants tend to involve more the right hemisphere, and the HFA variants tend to involve more the left hemisphere. The patterns of white and grey matter in both Asperger's and HFA differ from controls, both in volume and in pattern as we age,...with autistics generally not experiencing the age-related loss in brain volume that neurotypicals do. Asperger's variants have distinct patterns in the frontal lobe areas, as well. Obviously, there are hundreds of these imaging studies to comb through, so there is a ton of information out there, but in a summary, this is the trend in the data.

 

[Greatshield17]

As @MyLifeAsAnAspie has suggested, from an imaging perspective, I am not sure if we can come up with a well-defined conclusion,...primarily because of small sample size during each of these studies. However, if we look at the broader body of evidence from several imaging studies combined, we may be able to come up with some answers. For example,...differences can be found looking at grey/white matter volumes and patterns. More specifically, "Aspies" tend to differ from "high-functioning autism" (outdated terminology) in that Asperger's variants tend to involve more the right hemisphere, and the HFA variants tend to involve more the left hemisphere. The patterns of white and grey matter in both Asperger's and HFA differ from controls, both in volume and in pattern as we age,...with autistics generally not experiencing the age-related loss in brain volume that neurotypicals do. Asperger's variants have distinct patterns in the frontal lobe areas, as well. Obviously, there are hundreds of these imaging studies to comb through, so there is a ton of information out there, but in a summary, this is the trend in the data.

I see, thanks.

 

[Greatshield17]

I searched for DSM-5-TR and it looks like it will be released on March 18, 2022 and the criteria for ASD will be more restrictive so that people with milder autism will not qualify for a diagnosis.

Which is what I feared, and why I recommend that we print out AQ Tests and other Autism tests so that we can diagnose are family members, fears and acquaintances that we suspect, might be Autistic.

This of course, as I’ve said before, stems both, from our bad economic system and it’s in ability to get money for support, (which of course is also often bad) and the assumption that Autism must be bad and thus, any Autistic people who does too well in life cannot really be Autistic.

 

[Gift2humanity]

I'm hearing rumors that the people in charge are seeking to actually re-define the diagnostic criteria for Autism in the DSM-5. For awhile now, I've heard people saying that Autism is being "over-diagnosed" and that level-1 Autistic people aren't really Autistic. I've considered this to be the 2nd greatest threat to the Autistic community after prevention, (I don't believe a "cure" is possible.) as it'll lock level-1 Autistic people out of getting the accommodations they need and leaves them as social outcasts, wondering who they are, and why they think and do the things they do. I've printed out AQ tests incase something like this happens and have been meaning to print out those other tests you people have shared with me as well; I highly recommend that all Autistic people reading this to do the same, so that we can diagnose our children and acquaintances, if the establishment ends up refusing to.

However paradoxically, in some ways things like this are actually almost a good thing, why? Well in the past, people have told themselves that we don't really enjoy being Autistic and that we just tell ourselves we love it to cope with the "misery" of "having" this "horrible disease." Now people think that any Autistic person who, in their eyes, manages too well with things must not really be Autistic because Autism is bad. But by believing that, they actually have to confront us and tell us we're not Autistic and when they do that, they open themselves up to debate where we can fight back and make them see the reality of things. So as bad things might seem with this possible threat, it is also a sign that things, are paradoxically, moving in the right direction.

What are your thoughts on this? Do you know anything about these rumors? Do you have any plans for moving forward? I'm going to be away this Sunday so I won't be back until tomorrow to see and respond to your posts and thoughts, see you then.

I'm guessing you are not from the UK.
We don't do levels here.
I was diagnosed with Asperger's syndrome in 2020