[autismo-biologia] National Council on severe autism

Lun 5 Feb 2024 19:21:55 CET

Buonasera,

Cosa ne dite dell’integratore palmitoiletanolamide (Pea) e sue applicazioni/effetti per l’autismo ? Qualcuno ne ha già sentito parlare ?

Grazie mille

Carlo

From: autismo-biologia <autismo-biologia-bounces a autismo33.it> On Behalf Of Piero Crispiani
Sent: lunedì 5 febbraio 2024 16:40
To: autismo-biologia a autismo33.it
Subject: [EXT] Re: [autismo-biologia] National Council on severe autism

Concordo con le considerazioni della dott.ssa Daniela Mariani Cerati e da sempre affermo che quando si parla di autismo bisogna distinguere i casi ed i livelli.
Il caso grave o in comorbilità o in età adulta è spesso lontano dalla condizione più comune (spettro, disprassia severa ed altre definizioni).
Alla stessa maniera va detto che diversi sono i Trattamenti Abilitativi e la loro pertinenza per i casi di diverso livello e sono poco esportabili agli altri.
Ad esempio, gli approcci di ambito "cognitivista" (non "cognitivi" o "cognitivo-comportamentali") dei quali mi occupo, non sono adeguati per i casi severi.
Grazie
Prof. Piero Crispiani
Il 05/02/2024 13:42, daniela ha scritto:
Fino al maggio 2013 l’autismo faceva parte dei disturbi pervasivi dello sviluppo.

Nel DSM-5, pubblicato nel maggio 2013, si è creata la definizione di “Disturbi dello spettro autistico” comprendendo nello spettro una gamma molto ampia di condizioni, alcune caratterizzate da neurodiversità senza disabilità e talora con elementi di forza vantaggiosi. Questo ha creato grande confusione e ha danneggiato le persone più gravemente colpite, quelle che prima rientravano  nella definizione di disturbi pervasivi dello sviluppo.

Già nell’aprile 2020 Armando Mazzoni aveva sollevato su questa lista il problema

https://autismo33.it/pipermail/autismo-biologia/2020-April/003704.html<https://secure-web.cisco.com/1bTJFEfpyL6puYyQllivhZbhL4wt_njX9kXqWJWKBYjgslZ_MzvLbpQ3kQF3OzRA0-mGte9dQlYpzadc5tGQpPdml3N8RkUt4YNK-mpegDFLozCjhxfBv3ZOx4TYDwcfKq5jNaq5USVh6f1N0yoCQ0I1L1upZbSrtsZD3_947VEPJn38zjx5CEbDWJ1bFLQ5el4_BY0s7-Ld_GMJUg1ASO7wA20NgyFEBbUi68yNVHJHLo7TEpx0TxYzZPcvh9oYpTtF6zmruF8R0yK0jRVGW48t6AsKaeAf98TYJS_I4t6l5HOl7kMMxO7ucsiJPsrdX/https%3A%2F%2Fautismo33.it%2Fpipermail%2Fautismo-biologia%2F2020-April%2F003704.html>

L’articolo da lui citato “Against Neurodiversity”

https://aeon.co/essays/why-the-neurodiversity-movement-has-become-harmful<https://secure-web.cisco.com/1GwhDYG9vjVk9yw3BObHqNyb0RKLXDHILvyOFziHscOqtEA6f4qsLKNIk4l-F648bf5TnBPU_tgpH3Yv28BbZlN59OaK4IIRqKrWgQShYthKZeNAUw71ukgxB8t0y5gkFQeFkIySuu2pI0D4bSA-U1-KB958hSciG2oeatsPiF2Xjd5lREdPvNX7rqcllgkOtmO2DfeqafYoeZujyxq1XiLLKrpfromy0aOrQZy1MdabDO1UmIOgwCeg72t4qdViK1R9abzkJBgntOE0J52S-PhcUEMnA3iUhy_eh3lGV-5jqEVBmEGxNb113IXVpukYo/https%3A%2F%2Faeon.co%2Fessays%2Fwhy-the-neurodiversity-movement-has-become-harmful>

è stato pubblicato  nella sua traduzione al link

https://www.autismo33.it/recensioni_e_stampa/uno_spettro_troppo_grande.pdf<https://secure-web.cisco.com/1FSV8DLt37SLEWQYyt5rh0qt78CcQTpfFBlecOsOEjBDUh8oX1kxDwsaw5kDt09vyQH1yz1W4zhn7KxQVPOSlDXKmGuB7HVu7bKQeDPjt9pDo5qFeiNUbNXisieaMRutFBqgpP2GPnAAimR5Xyq5fbPJy-bC4ZcMe8Tozgx9c4J20CufmnSywSwcVqcJgHIA_19bw3aQNN4vNyR2O_irbQZAm_-6xfdl_LJK-_gGLq1Wg7K-MJkNVG7_0xoKiqEcUsU4R428JhoGs-yyXd0wjdJma_mlHDk6KMAVI_yGQuA6ltzZmIRbVrQggzIHU2NZp/https%3A%2F%2Fwww.autismo33.it%2Frecensioni_e_stampa%2Funo_spettro_troppo_grande.pdf>

Con la stessa preoccupazione, quella cioè di identificare l’autismo con il livello 1 dimenticando le persone con autismo severo, è nata l’associazione
“National Council on severe autism”

https://www.ncsautism.org/<https://secure-web.cisco.com/1O2SRsOFy0cgkvDwJIZreAs7MYf3OQcU_LWZcsta-Wn8Z005zHI2y8QrpoXTJ_h8OMNwE5f64EV8_auJpLTCK-zvnaRvXd85qYALN0tMLnvEl-EsKrqmSifzCDjPUkm9VSX1bRRJFO-Pj4H7sIViHdZxGVOquWECavjXZ8LeQ49J4wJ9N6WrJuhzl4nS3Ov8eQ0IdbcPo71ktcBWC9tZPaUBa-ut3uvgGnnZMA_NKAzuLjXfAToaSw6C5-c7GMCj7OiyQF0IsjYTEp--xxmHsz5cWYOS9fFV5Ozc-MiyBNaeuZxSSE-UPgC5za1FFwi8k/https%3A%2F%2Fwww.ncsautism.org%2F>

dal cui sito copio alcuni stralci

The broadening of the construct of autism in  the form of the Diagnostic and Statistical Manual (DSM-5) criteria for Autism Spectrum Disorder (ASD) in 2013, while well-intentioned, has had the effect of rendering the diagnosis essentially meaningless, as it allows for the same diagnosis to be given to wholly disparate individuals.
For example, a young man with no language, a low IQ, few functional abilities, and aggressive, dangerous behaviors “has ASD,” while a college professor with social anxieties and some OCD also “has ASD.”

NCSA Position Statement on Diagnostic Labels:

The Need for Categorical Recognition of Severe Autism in the DSM

We also appreciate that the DSM-5 made an attempt to disentangle different clinical realities in the

Levels of Severity matrix

This approach, however, errs by treating vast qualitative differences simply as a matter of degree along a linear scale.
Moreover, the matrix only partially describes the prominent phenotypes of the severely affected cohort of patients while subsuming them  into a group with strongly dissimilar presentations.
Adopted by NCSA Board of Directors, October 8, 2021

The suite of impairments described above are inextricably intertwined phenotypes, and in most cases the result of abnormalities of early neurodevelopment; there is no valid scientific or clinical reason for treating them as mere  “co-morbidities” to social communication deficits.
As the CDC has reported, more than 95% of autistic children suffer from at least one of these “comorbidities,” with an average of five co-occurring conditions. Individuals suffering from these extensive disabilities deserve categorical recognition, relieved of any need to compete with very different, and often far milder, clinical profiles that currently share an ASD label and have vastly different needs.
National Council on severe autism https://www.ncsautism.org/<https://secure-web.cisco.com/1O2SRsOFy0cgkvDwJIZreAs7MYf3OQcU_LWZcsta-Wn8Z005zHI2y8QrpoXTJ_h8OMNwE5f64EV8_auJpLTCK-zvnaRvXd85qYALN0tMLnvEl-EsKrqmSifzCDjPUkm9VSX1bRRJFO-Pj4H7sIViHdZxGVOquWECavjXZ8LeQ49J4wJ9N6WrJuhzl4nS3Ov8eQ0IdbcPo71ktcBWC9tZPaUBa-ut3uvgGnnZMA_NKAzuLjXfAToaSw6C5-c7GMCj7OiyQF0IsjYTEp--xxmHsz5cWYOS9fFV5Ozc-MiyBNaeuZxSSE-UPgC5za1FFwi8k/https%3A%2F%2Fwww.ncsautism.org%2F>  Adopted by NCSA Board of Directors, October 8, 2021

Con tutto il rispetto per chi ha una neurodiversità senza disabilità, ritengo utile che si sia formato il National Council on severe autism.
Greta Thunberg dice che l’autismo è un superpotere. Per alcuni lo sarà. Non per le persone di cui si occupa il  National Council on severe autism, alle quali devono essere forniti servizi per tutto l’arco della vita per un’assistenza di qualità e  per una abilitazione permanente.
     Daniela Mariani Cerati

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