Giffoni Valle Piana a novembre, nei giorni 25-26-27, presso Multimedia Valley ospiterà il VI Congresso Internazionale sull’Autismo con relatori provenienti dall’Italia e dal Mondo che faranno il punto della situazione e sulle recenti acquisizioni della ricerca scientifica e sui risvolti per la clinica e l’inclusione sociale.
Che cos’è il disturbo dello spettro autistico ormai lo sappiamo tutti, o meglio, crediamo di saperlo tutti. Film e serie tv ce lo presentano sugli schermi in tutte le forme, medici eccezionali, eroi atipici, il film “Rain Man” ha fatto la storia nel lontano 1988, che evocano nel complesso persone dotate di abilità fuori dal comune. Da aggiungere rappresentazioni teatrali, il tutto spesso ha poco a che vedere con la realtà. La comunicazione resta il fattore chiave per comprendere e far comprendere ai propri figli l’autismo. Esistono tanti tipi di autismo e le espressioni possono variare molto da persona a persona. Non esiste solo l’immagine un po’ stereotipata del ragazzo introverso che non parla mai con nessuno, ma anche soggetti estremamente socievoli, a volte anche un po’ troppo. È però vero che spesso i bambini con disturbi dello spettro autistico possono sembrare diversi agli occhi dei compagni di classe o di gioco. Sia per atteggiamenti esteriori particolari, movimenti del corpo stereotipati o il pronunciare una parola in continuazione, sia per le risposte agli stimoli che sono diverse da come ce le aspetteremmo. Pensiamo a un bimbo che fa uno scherzo a un altro bimbo. Il bambino autistico non è detto che risponda sorridendo, guardandolo negli occhi o magari facendo una battuta. Potrebbe avere reazioni impreviste. Questo potrebbe disorientare il compagno e influenzare in negativo i successivi rapporti tra i due. Infatti, si tende spesso ad evitare tutto ciò che non si capisce. L’intervento dei genitori e degli insegnanti fa la differenza. È importante far capire ai nostri figli che il bimbo autistico ha sensazioni e stimoli come gli altri bambini, ma il suo modo di comunicare con l’esterno è diverso. Per esempio un bimbo autistico, per far capire che ha l’emicrania, potrebbe iniziare a darsi delle botte in testa o a colpire allo stesso modo il suo compagno di banco. Non ha nulla contro se stesso né contro l’amico, ma è quello il modo che ha trovato per comunicare agli altri il suo malessere. È dunque importante far capire ai nostri figli che esistono diversi modi di comunicare lo stesso concetto e che alcune persone hanno un modo diverso di farlo, ma non meno significativo. Dopo le rappresentazioni cinematografiche, le caratteristiche della persona con disturbo dello spettro autistico restano le perplessità delle famiglie, delle mamme che lottano ogni giorno per garantire ai loro figli autistici un posto nel mondo, una lotta strenua con la speranza che quando lei non ci sarà più, lui sarà in buone mani, mani che sapranno rispettarlo ed averne cura. Lotta con la speranza che lo Stato si accorga di lui e di tutte le persone con neurodiversità. Lontano dai riflettori infatti, quando la luce dei cameraman si spegne e la puntata finisce, rimangono le famiglie: famiglie che devono gestire una crisi di agitazione psicomotoria; famiglie alle prese con la selettività alimentare dei loro piccoli, costrette ad inventarsi pietanze con ingredienti dello stesso colore o consistenza, costrette a frullare qualsiasi alimento pur di far prendere loro qualche chilo o al contrario, chiudere a chiave le dispense per limitarne l’iperfagia; famiglie che non hanno un sonno ristoratore da anni, a causa del terrore notturno e dell’insonnia; famiglie disorientate nella transizione all’età adulta; famiglie che fanno salti mortali per potersi permettere psicoterapie, tutoraggio ai compiti e attività ludico-sportive; coniugi che non gustano una cena o un week end romantico da secoli, e che non ne ipotizzano nemmeno la possibilità; fratelli o sorelle che non ricevono sufficienti attenzioni e cure, perché c’è qualcuno in famiglia che inevitabilmente attira tutti gli occhi a sé. Il COVID-19 è stata una fase drammatica poiché ha imposto l’isolamento a tutti, ma per chi lo è da sempre questa non è una novità. La novità è stata ritrovarsi a dover far comprendere al proprio figlio con disturbo dello spettro autistico perché tante azioni routinarie programmate saggiamente non potevano più essere eseguite, quando tutto ad un tratto è diventato inaccessibile. La novità per i genitori è stata dover strutturare una nuova routine, altrettanto stimolante e cucita su misura del proprio figlio, rispettando i suoi tempi attentivi, i suoi gusti e i suoi canali comunicativi; disporre un’agenda visiva che scandisca, nei tempi e nei luoghi, le giornate, aumentandone così la prevedibilità e riducendo l’ansia dell’incerto. Poi ci sono i cartoni animati, i film, i giochi al tablet, tanto attraenti quanto difficili da gestire, ma che in alcuni momenti sembrano l’unica risorsa da mettere in campo. Poi c’è anche il lavoro, ci sono altri figli, o cari di cui prendersi cura, c’è la gestione della casa, la preparazione dei pasti. Ecco che allora dovremmo iniziare a credere che i supereroi esistono davvero e potremmo chiamarli super genitori. Ogni supereroe che si rispetti ha tuttavia bisogno di una spalla forte e di fiducia. Pensate che esistono anche quelli: gli educatori, gli psicologi, i logopedisti, i tecnici della neuro e psicomotricità, gli psichiatri e i neuropsichiatri infantili che hanno attivato in tutta Italia sportelli di ascolto telefonico, videochiamate di supporto online e fornitura di materiale didattico-educativo a distanza.
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