Lancet Report: Momentum builds toward breaking up of ASD
02 Feb 2022, 10:12 am
carlos55 wrote:
Looks like its officially happened and will apply to 18% to 48% of those with ASD.
https://www.autismparentingmagazine.com ... tism-term/
https://www.autismparentingmagazine.com ... tism-term/
This "official" recognition, so far, is only by a Lancet Commission report and by the Autism Science Foundation (a private nonprofit organization), not by any government body and not by the DSM or ICD.
That it would be accepted by the Autism Science Foundation is no surprise, given that the Autism Science Foundation was founded by Alison Singer, who is currently on the board of the National Council on Severe Autism, the organization that proposed the idea of a "profound autism" label in the first place.
Alison Singer was also the person in the Autism Speaks video "Autism Every Day" who made the infamous remark about contemplating driving off a bridge with her daughter. See her explanation of that remark here on the blog of the Autism Science Foundation.
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Last edited by Mona Pereth on 02 Feb 2022, 10:24 am, edited 2 times in total.
02 Feb 2022, 10:19 am
carlos55 wrote:
The figures I quoted are scientific fact I’m afraid
https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm
https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm
You seem to have misread the article? It says the following (emphasis mine):
Quote:
Finally, ADDM Network data have shown a shift toward children with ASD with higher intellectual ability (9–11), as the proportion of children with ASD whose intelligence quotient (IQ) scores fell within the range of intellectual disability (ID) (i.e., IQ <70) has decreased gradually over time. During 2000–2002, approximately half of children with ASD had IQ scores in the range of ID; during 2006–2008, this proportion was closer to 40%; and during 2010–2012, less than one third of children with ASD had IQ ≤70 (9–11). This trend was more pronounced for females as compared with males (9). The proportion of males with ASD and ID declined from approximately 40% during 2000–2008 (9) to 30% during 2010–2012 (10,11). The proportion of females with ASD and ID declined from approximately 60% during 2000–2002, to 45% during 2006–2008, and to 35% during 2010–2012 (9–11).
These changes are almost certainly due not to changes in actual ASD prevalence but to more widespread awareness of ASD, hence more children getting diagnosed.
The larger change for girls than for boys is likely due to the widely-recognized problem of under-diagnosis of girls.
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02 Feb 2022, 3:43 pm
Mona Pereth wrote:
carlos55 wrote:
The figures I quoted are scientific fact I’m afraid
https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm
https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm
You seem to have misread the article? It says the following (emphasis mine):
Quote:
Finally, ADDM Network data have shown a shift toward children with ASD with higher intellectual ability (9–11), as the proportion of children with ASD whose intelligence quotient (IQ) scores fell within the range of intellectual disability (ID) (i.e., IQ <70) has decreased gradually over time. During 2000–2002, approximately half of children with ASD had IQ scores in the range of ID; during 2006–2008, this proportion was closer to 40%; and during 2010–2012, less than one third of children with ASD had IQ ≤70 (9–11). This trend was more pronounced for females as compared with males (9). The proportion of males with ASD and ID declined from approximately 40% during 2000–2008 (9) to 30% during 2010–2012 (10,11). The proportion of females with ASD and ID declined from approximately 60% during 2000–2002, to 45% during 2006–2008, and to 35% during 2010–2012 (9–11).
These changes are almost certainly due not to changes in actual ASD prevalence but to more widespread awareness of ASD, hence more children getting diagnosed.
The larger change for girls than for boys is likely due to the widely-recognized problem of under-diagnosis of girls.
The gold standard stats come from the CDC they show around a third of 8-year-old with autism are ID.
However, its not as simple as just drawing a black line between ID & normal IQ, as around 25% are in a border range of ID, with an IQ below the normal range.
Did the original stats include this border range? If not, that would explain the drop. Scientific studies show nearly all ID children stay ID in adulthood and the border range splits approx in half, each half joining normal range / ID.
So, from this it’s fair to say around 40+ % of autistic adults are probably ID, not something that’s just a rare co-morbid and it goes along way in explaining why so many autistic people struggle.
Also this obvious fact is picked up by the Lancet, one of the most respected medical journals in the world.
Basically, it recognises the position of the DSM and referring to Autism as one thing or the useless ASD 123 is untenable in the long term, so there will probably be a DSM 6, maybe including intelligence, dyspraxia or profound autism?
In the long term the 1940`s label autism will end up being scrapped anyway in favour of clinical subtypes, so this is just a temporary measure.
Sure, groups like the 7 or so in the small ASAN office will complain but in the end patient needs come first and maybe in time they will see the futility in clinging on to the Autism umbrella label as a proper clinical explanation of symptoms.
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02 Feb 2022, 10:32 pm
carlos55 wrote:
However, its not as simple as just drawing a black line between ID & normal IQ, as around 25% are in a border range of ID, with an IQ below the normal range.
Do you have a source of stats for this border range?
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- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
- My Twitter / "X" (new as of 2021)
03 Feb 2022, 1:59 am
Mona Pereth wrote:
carlos55 wrote:
However, its not as simple as just drawing a black line between ID & normal IQ, as around 25% are in a border range of ID, with an IQ below the normal range.
Do you have a source of stats for this border range?
Yes it was discussed a few months ago on this thread inc all official links
viewtopic.php?t=401042
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"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
10 Feb 2022, 10:37 am
Really the term should be scratched out altogether. Sometimes you need to go back to the beginning and try and rebuild your understanding of it without the baggage of the past.
If this was done, I think it would become pretty obvious that "ASD" is a worse than useless term, lumping together different things with different causes and different presentations. It obscures more than it reveals -- and what is the point of language if not to describe reality as best as we can?
11 Feb 2022, 8:39 am
Magneto wrote:
Really the term should be scratched out altogether. Sometimes you need to go back to the beginning and try and rebuild your understanding of it without the baggage of the past.
If this was done, I think it would become pretty obvious that "ASD" is a worse than useless term, lumping together different things with different causes and different presentations. It obscures more than it reveals -- and what is the point of language if not to describe reality as best as we can?
If this was done, I think it would become pretty obvious that "ASD" is a worse than useless term, lumping together different things with different causes and different presentations. It obscures more than it reveals -- and what is the point of language if not to describe reality as best as we can?
Yes agree however though we are talking about the brain so nothing is simple.
They are trying to apply a 1940’s label from a small sample to millions of people and of course it doesn’t work
There is huge effort at the moment to sub divide autism but it won’t happen overnight.
For now all we have is this useless word to describe multiple issues that everyone is laying claim to
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- George Bernie Shaw
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15 Feb 2022, 6:09 pm
Your questions about the Lancet Commission and ‘profound autism,’ answered
Quote:
Last month, Spectrum hosted a webinar with autism researchers Tony Charman and Catherine Lord, who co-chaired the Lancet Commission’s set of recommendations for the autism field.
Conversations around the commission continue; yesterday, the European Council of Autistic People published an open letter responding to the report. The letter included a call for researchers to focus on concepts developed by autistic scholars and described the newly introduced term ‘profound autism’ as “highly problematic.”
Because Charman and Lord’s discussion prompted more questions than could be answered during the hour-long webinar, Spectrum asked them to respond to major queries in written form.
Given that researchers have long acknowledged the heterogeneity of autism, why are the sample sizes in many studies still so small?
Tony Charman and Catherine Lord: We agree that sample sizes vary widely across studies, but we are limited by budgets set by funding agencies. Some studies — for example, longitudinal studies — are resource-intensive because of the need to see participants in person over multiple assessments and, at the beginning, to comprehensively evaluate participants in order to describe the heterogeneity. Although sample sizes in autism research historically were small, they have increased dramatically in the past 20 years, with many research groups and consortia now collaborating to achieve sample sizes in the hundreds and sometimes thousands.
Did you consider using a community-based participatory research approach to this project?
TC and CL: Community-based participatory research is important, but it isn’t what this particular project was intended to be. The goal of this project was to bring together cutting-edge clinical researchers who would work together to identify goals for the future. In addition, there were self-advocates and parents and clinicians who were members of the panel, but the focus was not primarily to get information from life experience. That would be a different project, though equally important.
Is there any research on how the death of a parent affects an autistic person and what their care should look like at that point? Did the commission discuss this at all?
TC and CL: As far as we know, there is no systematic research about how the death of a parent affects an autistic individual, but we might be wrong. This was discussed by our panel only in the sense that it is something we need to know more about.
Could you expand on the idea that more research on supports and interventions needs to include the adult population?
TC and CL: For years, there was a very deliberate decision — which still may be true for some funding agencies — to focus on the early years and early intervention. The idea was that if difficulties could be addressed earlier, the biggest changes might occur. However, we think we are now much more aware that although the needs of autistic people change from early childhood to adulthood, services and supports for adults are just as important as those for young children, and we highlight the need for researchers and funding agencies to address these issues.
Does the commission recommend or support research to help parents make decisions about treatments and tools, particularly those that aren’t evidence-based, such as facilitated communication?
TC and CL: The evidence base for facilitated communication — that generally it does not work — is one of the strongest evidence bases in our field, though proponents continue to argue in support of it.
What do you think of the criticisms that the ‘profound autism’ category could be harmful? How did you consider this when writing the report?
TC and CL: We did consider this in our discussions. We want to be clear that this is not a mandatory label. No one has to use it. Our goal was to provide a term that could be used, if appropriate, to describe children or adults who need intensive support throughout their lives. The intended aim was to highlight the needs of this vulnerable and underserved group of autistic individuals.
Is there a word for autistic people who aren’t in the ‘profound’ category?
TC and CL: Autism.
Your data showed proportionally more girls and women than boys and men in the ‘profound’ category. Why might that be? How reliable are those data?
TC and CL: The numbers of females in our different datasets are small, so the data are just suggestive, not conclusive.
How might researchers include more profoundly autistic participants in their studies?
TC and CL: We need measures and research strategies that don’t require either holding still (such as in many imaging studies), being able to make sophisticated inferences (such as in many ‘social’ studies that use visual and verbal images) or having much receptive or expressive language. Some researchers are working on this — but it requires more time, more skilled staff and more money to carry out than studying people who can talk, hold still and “play games,” such as determining what someone else is thinking by looking at a picture or hearing a story.
Conversations around the commission continue; yesterday, the European Council of Autistic People published an open letter responding to the report. The letter included a call for researchers to focus on concepts developed by autistic scholars and described the newly introduced term ‘profound autism’ as “highly problematic.”
Because Charman and Lord’s discussion prompted more questions than could be answered during the hour-long webinar, Spectrum asked them to respond to major queries in written form.
Given that researchers have long acknowledged the heterogeneity of autism, why are the sample sizes in many studies still so small?
Tony Charman and Catherine Lord: We agree that sample sizes vary widely across studies, but we are limited by budgets set by funding agencies. Some studies — for example, longitudinal studies — are resource-intensive because of the need to see participants in person over multiple assessments and, at the beginning, to comprehensively evaluate participants in order to describe the heterogeneity. Although sample sizes in autism research historically were small, they have increased dramatically in the past 20 years, with many research groups and consortia now collaborating to achieve sample sizes in the hundreds and sometimes thousands.
Did you consider using a community-based participatory research approach to this project?
TC and CL: Community-based participatory research is important, but it isn’t what this particular project was intended to be. The goal of this project was to bring together cutting-edge clinical researchers who would work together to identify goals for the future. In addition, there were self-advocates and parents and clinicians who were members of the panel, but the focus was not primarily to get information from life experience. That would be a different project, though equally important.
Is there any research on how the death of a parent affects an autistic person and what their care should look like at that point? Did the commission discuss this at all?
TC and CL: As far as we know, there is no systematic research about how the death of a parent affects an autistic individual, but we might be wrong. This was discussed by our panel only in the sense that it is something we need to know more about.
Could you expand on the idea that more research on supports and interventions needs to include the adult population?
TC and CL: For years, there was a very deliberate decision — which still may be true for some funding agencies — to focus on the early years and early intervention. The idea was that if difficulties could be addressed earlier, the biggest changes might occur. However, we think we are now much more aware that although the needs of autistic people change from early childhood to adulthood, services and supports for adults are just as important as those for young children, and we highlight the need for researchers and funding agencies to address these issues.
Does the commission recommend or support research to help parents make decisions about treatments and tools, particularly those that aren’t evidence-based, such as facilitated communication?
TC and CL: The evidence base for facilitated communication — that generally it does not work — is one of the strongest evidence bases in our field, though proponents continue to argue in support of it.
What do you think of the criticisms that the ‘profound autism’ category could be harmful? How did you consider this when writing the report?
TC and CL: We did consider this in our discussions. We want to be clear that this is not a mandatory label. No one has to use it. Our goal was to provide a term that could be used, if appropriate, to describe children or adults who need intensive support throughout their lives. The intended aim was to highlight the needs of this vulnerable and underserved group of autistic individuals.
Is there a word for autistic people who aren’t in the ‘profound’ category?
TC and CL: Autism.
Your data showed proportionally more girls and women than boys and men in the ‘profound’ category. Why might that be? How reliable are those data?
TC and CL: The numbers of females in our different datasets are small, so the data are just suggestive, not conclusive.
How might researchers include more profoundly autistic participants in their studies?
TC and CL: We need measures and research strategies that don’t require either holding still (such as in many imaging studies), being able to make sophisticated inferences (such as in many ‘social’ studies that use visual and verbal images) or having much receptive or expressive language. Some researchers are working on this — but it requires more time, more skilled staff and more money to carry out than studying people who can talk, hold still and “play games,” such as determining what someone else is thinking by looking at a picture or hearing a story.
Open letter to the Lancet Commission on the future of care and clinical research in autism
Quote:
14 February 2022
We wish to address the Lancet Commission on the future of care and clinical research in autism on behalf of the Global Autistic Task Force on Autism Research, a committee comprising autistic advocates, researchers and representatives of organisations by and for autistic people.
As the Commission emphasised the importance of collaborative participation, we look forward to being included as collaborators. We appear to have remained largely invisible, generalised briefly as ‘the neurodiversity movement’.
It is encouraging that the need for system change and the value of neurodiversity were recognised by the Commission. However, some omissions contradict this message. Studies mapping autistic people’s priorities regarding research were not mentioned. Participatory research was mentioned but not defined, nor was literature on its principles cited.
We find the proposal to adopt the term ‘profound autism’ highly problematic, as well as the overall emphasis on behavioural interventions, excluding more recent, promising approaches. We disagree with the recommendation to focus clinical research on randomised controlled trials for short-term interventions, including medication and behavioural trials.
To improve autistic lives, we need concepts developed by autistic scholars applied to clinical research. We need research on causes of mortality, access to health care, and improving mental health support. We need research on screening and diagnosis for all countries, and the health consequences of system factors: discrimination, mistreatment, poverty and lack of access to appropriate services. We need closer involvement of autistic people to ensure that clinical trials are truly ethical, and to curb the development of pseudo-treatments.
We call for shared, accessible platforms to continue the discourse and start building collaboration.
Signatories (country code in parentheses)
European Council of Autistic People (EUR)
Heta Pukki (President)
Martijn Dekker (Board member)
Autistic Self Advocacy Network (INTL)
Collectivo Autista Mi Cerebro Atípico (INTL)
Bárbara Herrán (CEO)
Autistic Doctors International (INTL)
Mary Doherty (ADI Founder)
Sebastian Shaw (ADI Research Lead)
Sue McCowan (ADI Psychiatry Lead)
Participatory Autism Research Collective (UK)
Damian Milton (Chair)
Autismus-Forschungs-Kooperation (DE)
Silke Lipinski (for the working group)
Autistic Collaboration Trust (NZ)
Jorn Bettin (Chairperson)
Quinn Dexter (Advisory Board Member)
estas, Adult Autistic Self-Advocacy Meeting (KR)
Yoon wn-ho (Co-moderator)
Jang Ji-Yong (Co-moderator)
Onemoo Lee
Lees- en Adviesgroep Volwassenen met Autisme (BE)
Jo Bervoets
Autism Rights Group Highland (UK)
Kabie Brook (Chairperson)
Joshua Hennessy (Assistant Chairperson)
Asociación Autistas de Colombia (CO)
Monica Vidal Gutierrez
The Autistic Realm Australia Inc. (AU)
Kylieanne Derwent (Co-Founder & Vice Chair)
Asociația suntAutist (RO)
Ovidiu Platon (Chair)
Suomen Autismikirjon Yhdistys (FI)
Minna Brockmann (Chairperson)
Annikka Suoninen (Project Coordinator)
PAS Nederland (NL)
Tammo Michel (chairperson / secretary)
Otoemojite (Neurodiversity self-help group) (JP)
Satsuki Ayaya
CLE Autistes (FR)
Garance Jacquot (Secretary) for the Board
Autisme- og Aspergerforeningen for Voksne (DK)
Nina Catalina Michaelsen (Chairperson)
Silke Rudolph (Board Member/Treasurer)
Inicijativa za autizam i ostale neurodivergentnosti, samozastupanje i kulturu različitosti ASK (autistic initiative) (HR)
Kosjenka Petek
Sunčica Lovrečić Čekić
Aspies e.V. (DE)
Hajo Seng (co-Chair)
Rainer Döhle (co-Chair)
Autistics Unmasked (US)
Heini Natri
Adventor o. s. (CZ)
Michal Roškaňuk (Chairman)
A-komunita (CZ)
Vojta Bartošík (Chairman)
Asociación Autistas de Mexico (MX)
Yadira Garcia Rojas (President)
Giovanna Villarreal Estrada ( Secretary)
We wish to address the Lancet Commission on the future of care and clinical research in autism on behalf of the Global Autistic Task Force on Autism Research, a committee comprising autistic advocates, researchers and representatives of organisations by and for autistic people.
As the Commission emphasised the importance of collaborative participation, we look forward to being included as collaborators. We appear to have remained largely invisible, generalised briefly as ‘the neurodiversity movement’.
It is encouraging that the need for system change and the value of neurodiversity were recognised by the Commission. However, some omissions contradict this message. Studies mapping autistic people’s priorities regarding research were not mentioned. Participatory research was mentioned but not defined, nor was literature on its principles cited.
We find the proposal to adopt the term ‘profound autism’ highly problematic, as well as the overall emphasis on behavioural interventions, excluding more recent, promising approaches. We disagree with the recommendation to focus clinical research on randomised controlled trials for short-term interventions, including medication and behavioural trials.
To improve autistic lives, we need concepts developed by autistic scholars applied to clinical research. We need research on causes of mortality, access to health care, and improving mental health support. We need research on screening and diagnosis for all countries, and the health consequences of system factors: discrimination, mistreatment, poverty and lack of access to appropriate services. We need closer involvement of autistic people to ensure that clinical trials are truly ethical, and to curb the development of pseudo-treatments.
We call for shared, accessible platforms to continue the discourse and start building collaboration.
Signatories (country code in parentheses)
European Council of Autistic People (EUR)
Heta Pukki (President)
Martijn Dekker (Board member)
Autistic Self Advocacy Network (INTL)
Collectivo Autista Mi Cerebro Atípico (INTL)
Bárbara Herrán (CEO)
Autistic Doctors International (INTL)
Mary Doherty (ADI Founder)
Sebastian Shaw (ADI Research Lead)
Sue McCowan (ADI Psychiatry Lead)
Participatory Autism Research Collective (UK)
Damian Milton (Chair)
Autismus-Forschungs-Kooperation (DE)
Silke Lipinski (for the working group)
Autistic Collaboration Trust (NZ)
Jorn Bettin (Chairperson)
Quinn Dexter (Advisory Board Member)
estas, Adult Autistic Self-Advocacy Meeting (KR)
Yoon wn-ho (Co-moderator)
Jang Ji-Yong (Co-moderator)
Onemoo Lee
Lees- en Adviesgroep Volwassenen met Autisme (BE)
Jo Bervoets
Autism Rights Group Highland (UK)
Kabie Brook (Chairperson)
Joshua Hennessy (Assistant Chairperson)
Asociación Autistas de Colombia (CO)
Monica Vidal Gutierrez
The Autistic Realm Australia Inc. (AU)
Kylieanne Derwent (Co-Founder & Vice Chair)
Asociația suntAutist (RO)
Ovidiu Platon (Chair)
Suomen Autismikirjon Yhdistys (FI)
Minna Brockmann (Chairperson)
Annikka Suoninen (Project Coordinator)
PAS Nederland (NL)
Tammo Michel (chairperson / secretary)
Otoemojite (Neurodiversity self-help group) (JP)
Satsuki Ayaya
CLE Autistes (FR)
Garance Jacquot (Secretary) for the Board
Autisme- og Aspergerforeningen for Voksne (DK)
Nina Catalina Michaelsen (Chairperson)
Silke Rudolph (Board Member/Treasurer)
Inicijativa za autizam i ostale neurodivergentnosti, samozastupanje i kulturu različitosti ASK (autistic initiative) (HR)
Kosjenka Petek
Sunčica Lovrečić Čekić
Aspies e.V. (DE)
Hajo Seng (co-Chair)
Rainer Döhle (co-Chair)
Autistics Unmasked (US)
Heini Natri
Adventor o. s. (CZ)
Michal Roškaňuk (Chairman)
A-komunita (CZ)
Vojta Bartošík (Chairman)
Asociación Autistas de Mexico (MX)
Yadira Garcia Rojas (President)
Giovanna Villarreal Estrada ( Secretary)
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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
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08 Dec 2022, 10:38 am
Calls for a ‘profound autism’ diagnosis - Podcast interviewing Professor Andrew Whitehouse for the Australian Broadcasting Corporation
Besides autism this podcast touches on ADHD, Aspergers, and transgender issues
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
