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

2. 2 1.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…’

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

4. 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

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

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

7. 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 ? :

8. www.hildedeclercq.be Hilde@Hildedeclercq.be 8 3. About Change and Acceptance The problem is not in the person but within society Society has to change !

9. 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

10. 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

11. www.hildedeclercq.be Hilde@Hildedeclercq.be 11 About my priorities In the beginning… The Label ? The IQ ? Eye-hand coordination Emerging skills Left handed ? Right handed ? Fine motor skills ? Play skills ? Writing and reading ? Perspective Taking Skills ? …INDIVIDUALIZED EDUCATIONAL PROGRAMME!!!

12. 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 !!!

13. www.hildedeclercq.be Hilde@Hildedeclercq.be 13 4. Quality of life …A Plan for Life ! What is a good life? – For this person (with ‘a label’) – According to HIM – According to his environment – According to his network – According to the people who love him – NOT (ONLY) ACCORDING TO THE PROFESSIONALS

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

15. www.hildedeclercq.be Hilde@Hildedeclercq.be 15 Who will have to do all this ??? Parents ? Professionals ? Together ? Collaboration also with persons with ASC !!! We need professionals who share the point of view of the person with ASC, …his parents and his network… Society building ?!!!