Psycho-educatie helpt de persoon en de omgeving te begrijpen wat autisme inhoudt. Door het aanreiken van theorie over de diagnose en het aanbieden van praktische handvaten kan de persoon met autisme zichzelf beter begrijpen of kan de persoon door anderen beter worden ondersteund. Echter, omdat de specifieke toepassing en implementering van psycho-educatie bij kinderen en adolescenten in Vlaanderen grotendeels onbekend is, gingen Zoë Ronsse en Amber Moerman in hun masterproefonderzoek na hoe psycho-educatie momenteel in Vlaanderen wordt toegepast. In dit onderzoek kwamen zowel personen met autisme als ouders aan bod, in combinatie met diverse experten en praktijken.
Het onderzoek onder leiding van prof. dr. Sarah De Pauw is tot stand gekomen op vraag van Sint Lievenspoort te Gent. Deze organisatie biedt verschillende onderwijs- en ondersteuningsvormen aan. Zij stelden zich de vraag hoe psycho-educatie voor kinderen en jongeren met autisme in andere centra wordt toegepast.
Hoe wordt psycho-educatie vandaag in Vlaanderen toegepast?
Er bestaan verschillende vormen van psycho-educatie. Zo zijn er diverse werkboeken, leesboeken en spelletjes op de markt. De bevraagde praktijken geven aan dat ze meestal de methodieken door elkaar gebruiken. Ze doorlopen de materialen niet volledig van het begin tot het einde, maar halen de delen eruit die interessant lijken voor de persoon waaraan de psycho-educatie wordt gegeven.
Enkele veelgebruikte voorbeelden van deze methodieken zijn ‘Ik ben speciaal 2’ van Peter Vermeulen, ‘Brain Blocks’ van Stephan van de Ven en de ‘Survivalgids, Wat als je autisme hebt?’ van Annelies Nys.
Hoe ervaarden de personen met autisme hun psycho-educatie proces?
De bevraagde volwassen personen met autisme zijn eerder neutraal of zelfs negatief over hun eigen ervaringen met psycho-educatie als kind of jongvolwassene. Ze vertelden dat ze het als erg formeel of ‘sec’ ervaarden en dat het te weinig aansloot bij hun eigen ervaringen. Zo gaf een participantaan dat zijn bestaande copingmechanismen niet in rekening werden gebracht bij het opstellen van tips en tricks. Enkele participanten gaven ook aan dat ze nadien op eigen initiatief zelf nog informatie zijn gaan opzoeken. Daarbij stelden ze zich de vraag of ze wel zelf in staat waren om een onderscheid te maken tussen betrouwbare en onbetrouwbare informatie.
De ouders van kinderen die zeer recent psycho-educatie kregen waren positiever. Zij ervaarden dit als zeer waardevol voor hun kind en zichzelf. Ze benadrukten wel dat een goede samenwerking tussen hen als context en de hulpverlener hierbij van groot belang is. Ouders in het onderzoek gaven expliciet aan dat ze zich betrokken willen voelen bij het proces, wat vaak gefaciliteerd werd wanneer de hulpverlener uitleg gaf over hoe hij/zij te werk gaat en hoe de psycho-educatie ook thuis kan worden toegepast.
Wat zijn de voordelen?
De bevraagde praktijken en experten geven aan dat psycho-educatie naast duidelijke informatie over de diagnose ook handvaten voor de toekomst kan meegeven. Dit kan gaan over plannen en organiseren, leren aangeven wat je noden zijn, maar ook samen zoeken naar wat rust kan brengen.
Eveneens zorgt het voor zelfinzicht. Door bewust stil te staan bij wat er aan de binnenkant aan het gebeuren is, worden leerkansen gecreëerd om hier in de toekomst op te anticiperen. Het onderzoek geeft ook aan dat het een gedeelde taal kan creëren. Dit wil zeggen dat de persoon met autisme woorden leert geven aan de eigen ervaringen en gevoelens.
Tot slot werkt het ook empowerend voor de persoon. Goede psycho-educatie geeft een eerlijk en realistisch beeld over de neutrale verschillen tussen personen, maar ook over sterktes en de ondersteuningsnoden van de persoon. Het proces probeert te kijken vanuit de sterktes om zo de persoon in diens kracht te kunnen zetten.
Wat kunnen de nadelen zijn?
Een nadeel van psycho-educatie kan de focus op ‘educatie’ zijn. Er wordt uitleg gegeven over een diagnose. Dit wil zeggen dat ‘het anders-zijn’ wordt bevestigd. Het gevaar hierbij is dat er weerstand ontstaat wanneer die persoon benoemd wordt als ‘anders’, en/of zich daarom ook anders kan voelen, er zo over zal denken en zich ernaar zal gedragen. Wanneer het ‘verschil’ wordt gedefinieerd en uitgelegd, worden er normatieve grenzen vastgelegd. Deze grenzen versterken op hun beurt het gevoel van ‘anders-zijn’ bij de persoon die buiten die grenzen valt en kan zelfs tot stigma leiden. Wie bepaalt echter wanneer iets anders is? Taal is een krachtig gegeven en kan veel beïnvloeden, waardoor hiermee voorzichtig en doordacht omgegaan moet worden.
Daarnaast waarschuwt het onderzoek ook dat psycho-educatie ervoor kan zorgen dat de persoon wordt gereduceerd tot de diagnose. Labels kunnen daarbij enerzijds leiden tot onderschatting van de competenties van de persoon.
Wat geeft het onderzoek mee aan de praktijk?
In de studie wordt aan de praktijken, experten, volwassenen met autisme en ouders van kinderen met autisme gevraagd hoe de ideale psycho-educatie er volgens hen moet uitzien. Daaruit kwamen een aantal werkzame factoren. Een eerste belangrijke factor is dat het een doorlopend en dynamisch proces dient te zijn met aandacht voor vroegtijdig opstarten en nazorg. Wanneer iemand zich vragen stelt over de diagnose op welke manier dan ook, moet daar vanaf het begin en gedurende de gehele levensloop aandacht voor zijn. Een tweede belangrijke factor is het op maat van het individu werken en hierbij afstappen van protocollen bij methodieken. Dit wil zeggen dat de methodieken niet van A tot Z dienen te worden gevolgd, maar er bijvoorbeeld bepaalde delen van verschillende methodieken door elkaar kunnen gebruikt worden in willekeurige volgorde. Daarbij hangt ook samen dat psycho-educatie vormgegeven moet worden vanuit de eigen ervaringen, voorbeelden en vragen van de persoon in kwestie. Daarbij dient het spectrum van autisme voldoende aan bod te komen. Door een breder inzicht te krijgen in de verscheidenheid aan personen, leren mensen gaandeweg dat de volgende quote van Stephen Shore de realiteit is: “if you’ve met one person with autism, you’ve met one person with autism”. Daarnaast is het noodzakelijk om ook de krachten en talenten van de persoon aan bod te laten komen doorheen het volledige proces. Hierbij is het belangrijk om deze niet te veralgemenen. De eigenschappen blijven specifiek aan de persoon.
Tenslotte geven zowel de experten als de personen met autisme aan dat er meer personen met autisme betrokken moeten worden bij het vormgeven van nieuwe psycho-educatie methodieken, zodat het voor en door hen kan worden ontwikkeld.
Besluit
Wat duidelijk is, is dat DE perfecte psycho-educatiemethodiek niet bestaat. In Vlaanderen wordt het heel vaak en heel divers toegepast. Belangrijk is dat psycho-educatie een gedeeld proces moet zijn, samen met het kind, de adolescent, of de volwassene met autisme én hun context. Het psycho-educatietraject mag dan ook niet vooraf vastliggen. Het is een zoektocht die vertrekt vanuit de vragen van de persoon met autisme, en samen met de hulpverlener wordt vormgegeven, waarbij op zoek wordt gegaan naar geschikte handvaten voor de toekomst.
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