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Quality of Life for People with Autism in a life long perspective

Quality of Life for People with Autism in a life long perspective. Reflections and Point of View of a Parent-Professional . Hilde De Clercq. Evolution of a Mother-Child relationship in Autism. FROM ‘WHAT’? towards ‘WHO’ ? Individual, changes over time

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Quality of Life for People with Autism in a life long perspective

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  1. Quality of Life forPeoplewithAutism in a life long perspective Reflections and Point of View of a Parent-Professional. Hilde De Clercq www.hildedeclercq.be Hilde@Hildedeclercq.be

  2. Evolution of a Mother-Child relationship in Autism FROM ‘WHAT’? towards ‘WHO’ ? Individual, changes over time Who is the special one ? Mothers labelled, categorized as : ‘mama of…’ www.hildedeclercq.be Hilde@Hildedeclercq.be

  3. Diagnosis, Label, FeelingsAll mixed and fluctuating • Denial • Fear • Anger • Protest • Hope • Satisfaction • Disappointment • Doubt • Despair • Depression • Happiness • … www.hildedeclercq.be Hilde@Hildedeclercq.be

  4. Adolescence and adulthood Different starting point, different point of view : Less emphasis on “WHAT”? but more on “WHO”? Not a mixture of all kinds of labels A human being, not a sum of symptoms www.hildedeclercq.be Hilde@Hildedeclercq.be

  5. 2. Evolution in my way of thinking about ‘handicap’ and ‘services’ From ‘What’ towards ‘Who’ www.hildedeclercq.be Hilde@Hildedeclercq.be

  6. ‘From the Cradle to the Grave’ • Opinions change…. www.hildedeclercq.be Hilde@Hildedeclercq.be

  7. LABELS CAN BE LIFESAVERS ??? • Importance of a diagnostic label : right label/right education • No answer to the ‘Who’- Question ? : www.hildedeclercq.be Hilde@Hildedeclercq.be

  8. 3. AboutChange and Acceptance The problem is not in the personbutwithin society Society has to change ! www.hildedeclercq.be Hilde@Hildedeclercq.be

  9. Inclusion is About change… • Change is frightening… • For Professionals : -Afraid of new responsibilities -Afraid of what they don’t understand -Afraid of losing their jobs www.hildedeclercq.be Hilde@Hildedeclercq.be

  10. Inclusion is About change… • Change is frightening : • For Parents : • It’s hard and difficult work • What about protection ? • Society is not ready for it www.hildedeclercq.be Hilde@Hildedeclercq.be

  11. About my priorities In the beginning… • The Label ? • The IQ ? • Eye-handcoordination • Emergingskills • Lefthanded ? Right handed ? • Fine motor skills ? • Play skills ? • Writing and reading ? • PerspectiveTakingSkills ? • …INDIVIDUALIZED EDUCATIONAL PROGRAMME!!! www.hildedeclercq.be Hilde@Hildedeclercq.be

  12. Nowadays ° WHO IS HE? ° HOW DOES HE FEEL? ° WHAT DOES HE NEED TO BE HAPPY? INDIVIDUALIZED PLAN FOR LIFE !!! www.hildedeclercq.be Hilde@Hildedeclercq.be

  13. 4. Quality of life…A Plan for Life ! • What is a goodlife? • For thisperson (with‘a label’) • According to HIM • According to his environment • According to hisnetwork • According to the peoplewholovehim • NOT (ONLY) ACCORDING TO THE PROFESSIONALS www.hildedeclercq.be Hilde@Hildedeclercq.be

  14. MOTIVATION • ‘SPECIAL’ INTERESTS www.hildedeclercq.be Hilde@Hildedeclercq.be

  15. Whowill have to do all this??? Parents ? Professionals ? Together ? Collaborationalsowithpersonswith ASC !!! We need professionals whoshare the point of view of the personwith ASC, …hisparents and hisnetwork… Society building ?!!! www.hildedeclercq.be Hilde@Hildedeclercq.be

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