It's far more stress inducing and hard to cope with than being part of the severe mental illness and the high IQ communities.
It's far more stress inducing and hard to cope with than being part of the severe mental illness and the high IQ communities.
I’m not sure where the autistic “community” is. This forum has a community of sorts but I don’t think it’s representative of the wider autistic population as members are overwhelmingly level 1 but not 2 or 3. My personal biggest challenge is that almost everyone here seems to be married, in a relationship and have family. These are all things I’ve never had and would love to have so it’s very invalidating for me, especially when everything I read suggests that the overwhelming majority of autistic people remain single.
But the forum has provided a useful place exchange information and learn more about autism and it’s nice to have somewhere to chat to people who share some of my life challenges. In my experience almost everyone here has good intentions.
But ASD is a spectrum condition. We are all different.
I don't know what all the levels mean, are they really helpful for anything other than assessing the level of support you need? I was given no level when I was assessed and I seem unable to get any further assessment to find out, I think as I'm too old for education and am on long term incapacity I'm not a priority.
If I get on with someone then the last thing on my mind is what level of support they need, I just know that it's someone I connect with.
The levels aren’t included in UK assessments and I agree with you - they can be misleading, especially given the spiky nature of ASD.
I can work, feed myself etc and so would likely be considered level 1, but if each of the ASD criteria were levelled separately, I suspect I’d be well inside level 2 for social communication difficulties.
Unless you've accidentally got these the wrong way around, I don't understand your logic
I did get these back to front - thank you for correcting me.
This to me means that there are a lot of diagnosed autists out there who would not meet the newer requirements however. Before under DSM-5 you only had to match one of the criteria whereas now under the replacement DSM-5-TR, you have to match all criteria.
The replacement for these (IDC-11 if I recall correctly) also has a very long list of criteria - some 18 in total) that need to be met for a diagnosis).
https://icd.who.int/browse/2024-01/mms/en#437815624
This does set off some alarm bells - if the government get wind of this then they may decide they can get rid of loads of potential PIP claimants by making them re-test and fall out of diagnosis.
The reason I raise this point is the government (of whatever political leaning) seem to be always pushing to reduce claimants for benefits, so this would be a low hanging fruit for them. Kick someone off, make them wait years for a re-diagnosis and at worst they save years of PIP payments.
It is only hypothetical but I think the logic is there, and from the governments behaviour towards disabled people, I think this quite within their grasp.
To me it does indicate that a number of the people who didn't reach the criteria under DSM-5 may reach it under DSM-V-TR.
Unless you've accidentally got these the wrong way around, I don't understand your logic.
Under DSM-5, if their assessors had misunderstood the meaning of the text, some people could have been wrongly diagnosed as autistic if they only met one or two of these requirements, all of which form part of criterion A, and all of which should have been met ...
"deficits in social-emotional reciprocity, in nonverbal communicative behaviors used for social interaction, and in developing, maintaining and understanding relationships"
... along with meeting all of the other criteria (B, C, D, and E).
The DSM-5-TR revision clarifies that a diagnosis requires (and was always intended to require) that they meet all of the points in criterion A.
There were a couple of issues with the wording regarding autism diagnoses in the original version of the DSM-5. These were remedied in the DSM-V-TR (2022).
It is good to see the guidelines are undergoing continuous improvement.
In your opinion do you think this could mean previous diagnoses (where people did not meet the ALL criteria) should be re-performed?
To me it does indicate that a number of the people who didn't reach the criteria under DSM-5 may reach it under DSM-V-TR.
There are several criticisms of the DSM-5. One major controversy is the idea that it may overdiagnose
I feel it's important to offer some reassurance to others about this point, with specific regard to autism (the manual also covers a host of other conditions).
There were a couple of issues with the wording regarding autism diagnoses in the original version of the DSM-5. These were remedied in the DSM-V-TR (2022).
This extract explains it better than I can:
" The DSM-5, released in 2013, indicated that an autism diagnosis requires “persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following”: deficits in social-emotional reciprocity, in nonverbal communicative behaviors used for social interaction, and in developing, maintaining and understanding relationships.
The first text revision in the new DSM-5-TR adds two words to that description: “as manifested by all of the following.”
The addition could help to dispel “a serious ambiguity” that left many clinicians confused about whether a diagnosis required any or all of those deficits, says Michael First, professor of clinical psychiatry at Columbia University, who serves as an editorial and coding consultant for the DSM-5.
The second change swaps out a single word describing the “specifiers” that can accompany an autism diagnosis. Whereas the DSM-5 wording instructs clinicians to specify if a person’s autism is “associated with another neurodevelopmental, mental or behavioral disorder,” the DSM-5-TR version reads: “associated with a neurodevelopmental, mental, or behavioral problem.” It still instructs clinicians to use additional diagnostic codes whenever appropriate, but it no longer requires specifiers to be diagnosable conditions.
This second change now makes it possible for clinicians to indicate co-occurring problems, such as self-injury, that don’t “rise to the level of disorder,” First says.
The first revision more accurately reflects what the DSM-5 working group always intended, First says. “People send emails to us saying, ‘I don’t understand how to interpret this,’” he says. “Those are the people who bothered to write in to us, so God knows the actual impact” on diagnosis and prevalence numbers.
There are no data, but the impact has probably been minimal, says Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles. “Hopefully, almost everybody making diagnoses got the message eventually that all three were required, even if it was slightly unclear.” Lord is a member of the DSM-5 neurodevelopmental disorders committee, but she did not work on this text revision.
“It seems like more of a theoretical concern,” Carpenter agrees. “I have never heard of someone going by the ‘any’ definition.” "
From: https://www.thetransmitter.org/spectrum/dsm-5-revision-tweaks-autism-entry-for-clarity/
Both classification systems are used here.
This does seem to be the case which is causing some of the confusion.
I note that the DSM5 uses levels while the other system, ICD-11 does not, looks like it is being phased out by 2026 in the UK:
https://healthcare-newsdesk.co.uk/for-information-preparations-for-the-implementation-of-icd-11/
The next revision of the International Classifications of Diseases (ICD), ICD-11, is now approved by the WHO and will be mandated for use in the future. Our assumption is that ICD-11 will not be mandated for use across the NHS in England before April 2026
I can't find any info on whether the NHS have formally adopted DSM or ICD but the following site implies that it ICD which is the more dominant one:
https://www.ncesc.com/geographic-faq/is-the-dsm-used-in-europe/
Does the NHS use DSM-5?
No, the DSM-5 does not have an official status in the NHS in England. However, DSM diagnostic criteria are sometimes referenced in clinical guidelines due to the prominence of the manual in scientific literature.
What is the controversy with the DSM-5?
There are several criticisms of the DSM-5. One major controversy is the idea that it may overdiagnose and pathologize normal behavior and mood patterns. Additionally, some argue that the manual overly medicalizes conditions, potentially leading to unnecessary treatment and medication.
I know NHS Scotland have formally adopted ICD-11 in 2022 so there will be no levels used there.
I'm not arguing over anything, I just went down a bit of a rabbit hole on researching this today and wanted to share my findings and illuminate the subject.
I agree with you - they can be misleading, especially given the spiky nature of ASD.
I can work, feed myself etc and so would likely be considered level 1, but if each of the ASD criteria were levelled separately, I suspect I’d be well inside level 2 for social communication difficulties.
Just to clarify, the DSM classification says that it can be helpful for assessors to note different levels of support (1, 2, or 3) that might be needed for each of social communication and restricted, repetitive behaviours - and goes on to say that they should be separately rated.
The levels aren’t included in UK assessments
They can be. Both classification systems are used here. My own assessment was carried out under DSM, so I was given a level.
The levels aren’t included in UK assessments
They can be. Both classification systems are used here. My own assessment was carried out under DSM, so I was given a level.
Unless you've accidentally got these the wrong way around, I don't understand your logic
I did get these back to front - thank you for correcting me.
This to me means that there are a lot of diagnosed autists out there who would not meet the newer requirements however. Before under DSM-5 you only had to match one of the criteria whereas now under the replacement DSM-5-TR, you have to match all criteria.
The replacement for these (IDC-11 if I recall correctly) also has a very long list of criteria - some 18 in total) that need to be met for a diagnosis).
https://icd.who.int/browse/2024-01/mms/en#437815624
This does set off some alarm bells - if the government get wind of this then they may decide they can get rid of loads of potential PIP claimants by making them re-test and fall out of diagnosis.
The reason I raise this point is the government (of whatever political leaning) seem to be always pushing to reduce claimants for benefits, so this would be a low hanging fruit for them. Kick someone off, make them wait years for a re-diagnosis and at worst they save years of PIP payments.
It is only hypothetical but I think the logic is there, and from the governments behaviour towards disabled people, I think this quite within their grasp.
To me it does indicate that a number of the people who didn't reach the criteria under DSM-5 may reach it under DSM-V-TR.
Unless you've accidentally got these the wrong way around, I don't understand your logic.
Under DSM-5, if their assessors had misunderstood the meaning of the text, some people could have been wrongly diagnosed as autistic if they only met one or two of these requirements, all of which form part of criterion A, and all of which should have been met ...
"deficits in social-emotional reciprocity, in nonverbal communicative behaviors used for social interaction, and in developing, maintaining and understanding relationships"
... along with meeting all of the other criteria (B, C, D, and E).
The DSM-5-TR revision clarifies that a diagnosis requires (and was always intended to require) that they meet all of the points in criterion A.
There were a couple of issues with the wording regarding autism diagnoses in the original version of the DSM-5. These were remedied in the DSM-V-TR (2022).
It is good to see the guidelines are undergoing continuous improvement.
In your opinion do you think this could mean previous diagnoses (where people did not meet the ALL criteria) should be re-performed?
To me it does indicate that a number of the people who didn't reach the criteria under DSM-5 may reach it under DSM-V-TR.
There are several criticisms of the DSM-5. One major controversy is the idea that it may overdiagnose
I feel it's important to offer some reassurance to others about this point, with specific regard to autism (the manual also covers a host of other conditions).
There were a couple of issues with the wording regarding autism diagnoses in the original version of the DSM-5. These were remedied in the DSM-V-TR (2022).
This extract explains it better than I can:
" The DSM-5, released in 2013, indicated that an autism diagnosis requires “persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following”: deficits in social-emotional reciprocity, in nonverbal communicative behaviors used for social interaction, and in developing, maintaining and understanding relationships.
The first text revision in the new DSM-5-TR adds two words to that description: “as manifested by all of the following.”
The addition could help to dispel “a serious ambiguity” that left many clinicians confused about whether a diagnosis required any or all of those deficits, says Michael First, professor of clinical psychiatry at Columbia University, who serves as an editorial and coding consultant for the DSM-5.
The second change swaps out a single word describing the “specifiers” that can accompany an autism diagnosis. Whereas the DSM-5 wording instructs clinicians to specify if a person’s autism is “associated with another neurodevelopmental, mental or behavioral disorder,” the DSM-5-TR version reads: “associated with a neurodevelopmental, mental, or behavioral problem.” It still instructs clinicians to use additional diagnostic codes whenever appropriate, but it no longer requires specifiers to be diagnosable conditions.
This second change now makes it possible for clinicians to indicate co-occurring problems, such as self-injury, that don’t “rise to the level of disorder,” First says.
The first revision more accurately reflects what the DSM-5 working group always intended, First says. “People send emails to us saying, ‘I don’t understand how to interpret this,’” he says. “Those are the people who bothered to write in to us, so God knows the actual impact” on diagnosis and prevalence numbers.
There are no data, but the impact has probably been minimal, says Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles. “Hopefully, almost everybody making diagnoses got the message eventually that all three were required, even if it was slightly unclear.” Lord is a member of the DSM-5 neurodevelopmental disorders committee, but she did not work on this text revision.
“It seems like more of a theoretical concern,” Carpenter agrees. “I have never heard of someone going by the ‘any’ definition.” "
From: https://www.thetransmitter.org/spectrum/dsm-5-revision-tweaks-autism-entry-for-clarity/
Both classification systems are used here.
This does seem to be the case which is causing some of the confusion.
I note that the DSM5 uses levels while the other system, ICD-11 does not, looks like it is being phased out by 2026 in the UK:
https://healthcare-newsdesk.co.uk/for-information-preparations-for-the-implementation-of-icd-11/
The next revision of the International Classifications of Diseases (ICD), ICD-11, is now approved by the WHO and will be mandated for use in the future. Our assumption is that ICD-11 will not be mandated for use across the NHS in England before April 2026
I can't find any info on whether the NHS have formally adopted DSM or ICD but the following site implies that it ICD which is the more dominant one:
https://www.ncesc.com/geographic-faq/is-the-dsm-used-in-europe/
Does the NHS use DSM-5?
No, the DSM-5 does not have an official status in the NHS in England. However, DSM diagnostic criteria are sometimes referenced in clinical guidelines due to the prominence of the manual in scientific literature.
What is the controversy with the DSM-5?
There are several criticisms of the DSM-5. One major controversy is the idea that it may overdiagnose and pathologize normal behavior and mood patterns. Additionally, some argue that the manual overly medicalizes conditions, potentially leading to unnecessary treatment and medication.
I know NHS Scotland have formally adopted ICD-11 in 2022 so there will be no levels used there.
I'm not arguing over anything, I just went down a bit of a rabbit hole on researching this today and wanted to share my findings and illuminate the subject.
