<div dir="auto">Buonasera <div dir="auto">Chiedo scusa...secondo voi come mai alcune associazioni tra cui ANFASS appoggiano le ultime linee guida.</div><div dir="auto">Chiedo questo in quanto a mia figlia di 9 anni "seguita" presso ANFASS è stato consigliato di assumere psicofarmaci, così come da linee guida, per risolvere alcuni comportamenti problematici, senza dare altra alternativa di trattamento comportamentale per la soluzione.</div><div dir="auto">Grazie</div></div><br><div class="gmail_quote"><div dir="ltr" class="gmail_attr">Il mer 1 mar 2023, 13:04 Associazione Cimadori <<a href="mailto:apri.associazione.cimadori@gmail.com">apri.associazione.cimadori@gmail.com</a>> ha scritto:<br></div><blockquote class="gmail_quote" style="margin:0 0 0 .8ex;border-left:1px #ccc solid;padding-left:1ex"><div dir="ltr"><p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Proprio a partire
dalle raccomandazioni dell’ISS del febbraio 2021 di prescrivere antipsicotici e
altri psicofarmaci ai bambini con ASD, è seguita una petizione indirizzata al
Ministro della Salute e al Presidente dell’ISS (</span><span style="color:black"><a href="http://chng.it/4PCKz4n6ct" style="color:blue" target="_blank" rel="noreferrer"><span style="font-size:12pt">http://chng.it/4PCKz4n6ct</span></a></span><span style="font-size:12pt;color:black">) che ad oggi ha raccolto quasi 25.000 firme di
associazioni, di esperti e di genitori di persone con ASD a cui,
successivamente, è seguito un Ricorso Straordinario al Capo dello Stato (</span><span style="color:black"><a href="https://apriautismo.it/wp-content/uploads/2021/06/Ricorso_Straordinario_Capo_dello_Stato_9.pdf" style="color:blue" target="_blank" rel="noreferrer"><span style="font-size:12pt">https://apriautismo.it/wp-content/uploads/2021/06/Ricorso_Straordinario_Capo_dello_Stato_9.pdf</span></a></span><span style="color:blue;text-decoration-line:underline"><span style="font-size:12pt;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial">)</span></span><span style="font-size:12pt;color:black"> che è ancora in attesa di decisione.</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">A fine novembre 2022
le raccomandazioni sugli interventi psicoterapeutici e pedagogici sono state
inviate dall’ISS agli stakeholder, incluse le associazioni di familiari e di
persone con ASD. Giudicandolo molto negativamente, lo abbiamo reso pubblico già
il 7 dicembre 2022</span><span style="font-size:12pt;color:black">, chiedendo pareri a
tutte le persone interessate, che in quanto singoli non potevano partecipare
alla consultazione “pubblica”. </span><span style="font-size:12pt;color:black"> </span><span style="font-size:11pt;color:black"><a href="http://www.informareunh.it/linea-guida-per-bambini-e-adolescenti-con-autismo-le-criticita-degli-interventi-psicosociali/" style="color:blue" target="_blank" rel="noreferrer"><span style="font-size:12pt">http://www.informareunh.it/linea-guida-per-bambini-e-adolescenti-con-autismo-le-criticita-degli-interventi-psicosociali/</span></a></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:red"> </span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Abbiamo poi
raccolto firme di associazioni, di organizzazioni sindacali e di privati per
chiedere di modificare questa proposta, prima che diventi definitiva </span><a href="https://apriautismo.it/wp-content/uploads/2023/01/Analisi_e_Criticita_LG_21_Autismo_-_DEFINITIVO_con_firme.pdf" style="font-size:11pt;color:blue" target="_blank" rel="noreferrer"><span style="font-size:12pt">https://apriautismo.it/wp-content/uploads/2023/01/Analisi_e_Criticita_LG_21_Autismo_-_DEFINITIVO_con_firme.pdf</span></a></p><p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt"> </span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">CRITICITA’ E
PROPOSTE</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Vengono
analizzati interventi psicoterapeutici o pedagogici speciali (definiti
“psicosociali”), tra quelli maggiormente utilizzati in Italia e all’estero con
evidenza scientifica, ma tutti raggiungono un punteggio con prove di efficacia
molto bassa, salvo poi consigliarli tutti, indipendentemente dal tipo di
intervento analizzato e dalle specifiche esigenze di bambini e ragazzi con ASD
che, nello spettro, hanno caratteristiche ed esigenze profondamente
differenziate.</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Per arrivare a
queste conclusioni l’ISS utilizza il metodo GRADE, ma pretende molte prove di
esperimenti randomizzati controllati (RCT) eseguiti per giunta su molti casi, puntando
al Gold Standard, che è adeguato per verificare l’efficacia dei farmaci, ma non
degli interventi psicoeducativi e delle terapie psicologiche. Se la prova non
raggiunge il punteggio del migliore Gold Standard (pari a 1), viene assegnato a
tutti il punteggio 4, il peggiore dei 4 possibili, e nessun voto intermedio
viene utilizzato.</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Dovrebbe essere
presa come valido esempio la recentissima linea guida dell’Australia </span><span style="color:black"><a href="https://www.autismcrc.com.au/interventions-evidence/summary-umbrella-review/evidence-table" style="color:blue" target="_blank" rel="noreferrer"><span style="font-size:12pt">https://www.autismcrc.com.au/interventions-evidence/summary-umbrella-review/evidence-table</span></a></span><span style="font-size:12pt;color:black">  che, </span><span style="font-size:12pt;color:black">pur utilizzando lo stesso metodo GRADE dell’ISS</span><span style="font-size:12pt;color:black">, assegna tre punteggi: quello eccelso, non raggiunto
da nessuno, quello intermedio e quello basso, che varia per ciascun tipo di
intervento a seconda dei diversi obiettivi da raggiungere per ogni specifica
finalità abilitativa. Il risultato restituisce una linea guida veramente utile.</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Ci lascia, pertanto,
perplessi la lettera di Anffas e altre associazioni che hanno dato pieno appoggio
al lavoro dell’ISS sollecitando la pubblicazione delle linee guida di bambini e
di adulti compreso le raccomandazioni sugli antipsicotici ai bambini già pubblicate
nel febbraio 2021!</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="color:black"><a href="https://www.superando.it/2023/02/03/verso-le-nuove-linee-guida-sullautismo-la-posizione-di-numerose-organizzazioni/" style="color:blue" target="_blank" rel="noreferrer"><span style="font-size:12pt">https://www.superando.it/2023/02/03/verso-le-nuove-linee-guida-sullautismo-la-posizione-di-numerose-organizzazioni/</span></a></span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Anche noi
vorremmo che la linea guida per gli adulti potesse essere pubblicata al più
presto, ma riteniamo che per i bambini e i ragazzi con ASD dovrebbe essere
revisionata con attenzione quella esistente.</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Senza una Linea
Guida capace di orientare la scelta, proprio perché si valutano tutti gli
interventi con prove di efficacia molto bassa, il SSN dovrà privilegiare quelli
che costeranno di meno. E anche la Conferenza Stato Regioni, in fase di
aggiornamento delle Linee di indirizzo, non potendo comparare gli interventi
dal punto di vista dell’efficacia, sarà indotta soltanto a risparmiare sulla
spesa.</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Cosa inserire
infine nei LEA (Livelli Essenziali di Assistenza)?</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Ricordiamo che all’</span><span style="font-size:12pt;color:black">art.60 </span><span style="font-size:12pt;color:black">i LEA prevedono per l’Autismo quanto segue:</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><i><span style="font-size:12pt;color:black">1. Ai sensi della
legge 18 agosto 2015, n. 134, il Servizio sanitario nazionale garantisce alle
persone con disturbi dello spettro autistico, le prestazioni della diagnosi
precoce, della cura e del trattamento individualizzato, mediante l'impiego di
metodi e strumenti basati <b>sulle più avanzate evidenze scientifiche</b>.</span></i><i><span style="font-size:12pt"></span></i></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt"> </span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">A sostegno della
nostra posizione e sulla base della preoccupazione che nutriamo nei confronti
di bambini e ragazzi con ASD e delle loro famiglie, abbiamo inviato il 22 c.m. un
ulteriore Appello ai Ministeri e all’ISS, per chiarire meglio le nostre
critiche e le nostre proposte: </span></p><p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><a href="https://apriautismo.it/wp-content/uploads/2023/02/Comunicato_Stampa_dopo_Appello_Anffas_-_22_2_2023.pdf" style="font-size:11pt;color:blue" target="_blank" rel="noreferrer"><span style="font-size:12pt">https://apriautismo.it/wp-content/uploads/2023/02/Comunicato_Stampa_dopo_Appello_Anffas_-_22_2_2023.pdf</span></a></p><p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt"> </span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Grazie e cordiali
saluti</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt"> </span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><u><span style="font-size:12pt;color:black">Promotori
dell’iniziativa</span></u><span style="font-size:12pt;color:black">:</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Cristiana
Mazzoni, presidente FIDA Coordinamento Italiano Diritti Autismo Aps</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Carlo Hanau,
presidente A.P.R.I. OdV ETS, Associazione Cimadori per la ricerca italiana
sulla sindrome di Down, l’autismo e il danno cerebrale. </span><span style="color:black"><a href="http://www.apriautismo.it" style="color:blue" target="_blank" rel="noreferrer"><span style="font-size:12pt">www.apriautismo.it</span></a></span><span style="font-size:12pt;color:black">   </span><span style="color:black"><a href="https://www.facebook.com/APRI.ONLUS/" style="color:blue" target="_blank" rel="noreferrer"><span style="font-size:12pt">https://www.facebook.com/APRI.ONLUS/</span></a></span><span style="font-size:12pt;color:black">  </span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><span style="font-size:12pt;color:black">Claudia
Nicchiniello, Legal advisor</span><span style="font-size:12pt"></span></p>

<p class="MsoNormal" style="margin:0cm;text-align:justify;line-height:normal;background-image:initial;background-position:initial;background-size:initial;background-repeat:initial;background-origin:initial;background-clip:initial;font-size:11pt;font-family:Calibri,sans-serif"><br></p></div>
_______________________________________________<br>
Lista di discussione autismo-biologia<br>
<a href="mailto:autismo-biologia@autismo33.it" target="_blank" rel="noreferrer">autismo-biologia@autismo33.it</a><br>
Autismo-biologia e' una lista di discussione promossa dall' A.P.R.I., Associazione Cimadori per la ricerca italiana sulla sindrome di Down, l'autismo e il danno cerebrale.<br>
<a href="http://www.apriautismo.it" rel="noreferrer noreferrer" target="_blank">www.apriautismo.it</a><br>
<br>
Per cancellarsi inviare un messaggio a: <a href="mailto:valerio.mezzogori@autismo33.it" target="_blank" rel="noreferrer">valerio.mezzogori@autismo33.it</a></blockquote></div>