krisztina horvat: the importance of self advocacy of people with autism in the context of...

THE IMPORTANCE OF AUTISTIC SELF- ADVOCACY IN THE CONTEXT OF PROGRESSIVE REFORMS - GOOD PRACTICE FROM HUNGARY

Kriszta Horvát – Gábor Petri

Equal Opportunities for Disabled People Non-profit Ltd.Eight Points Project (TAMOP-5.4.11.)

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Eight Points Project Core Activities

Supporting Institutions (27+10)

Parent Training, Family Programs

Set of Criteria

Training Programs for Professionals, Accredited Trainings

Professional Consultancy Network

AutismInformation System

National Autism Coordination Center

Eight Points Project: Practice Oriented Events and Training

Historical Review – Mitzi Waltz (2013)

• Medical model – focuses on the impairment of the individual based on a medical, diagnostic, therapeutical approach, describes the individual by focusing on defects and deficiencies.

• Social model – analyses the social interaction of the individual. It states that the disability becomes an impairment if the individual does not get appropriate support in his/her social interactions, if society fails to make reasonable adjustments.

• The framework of the social model is defined by the combination of the individual and the social situation of the individual.

• The multitude of different types of support that meet the needs of the individual play a key role for autistic people, not their physician or therapist.

We are making advances…

• in the direction of self-advocacy

• Parent networking and advocacy began despite the opposition of professionals about 40 years ago.

• Self-advocacy emerged in parallel with the appearance of the internet, despite the fact that autistic people were and still are unwanted participants of parent movements.

I am very proud who I am.Always remember that difference is cool. (Jackson, 2003)

Effective Self-AdvocacyGoodley (1998) Llewellyn and Northway (2008)

• It is not sufficient for self-advocacy groups to be formed or autistic people to be consulted, self-advocacy groups must be supported too.

• The mode of support, the attitude and role of the supporter determine the nature and effectiveness of self-advocacy.

• Tokenism offers no progress.

• It must be ensured that the group really advocates its own goals and that the supporter has no influence over the content and exercises no control over the group.

Neurodiversity - Jim Sinclair (1993)

Autism• is not a disease• is not a sin• is not immoral• is a way of being, a natural expression of human

diversity• represents a human value ”Don’t Mourn for Us” (Sinclair, 1993)• ”We are not sick, we don’t need to be cured”

(Sainsbury, 2011)

The ”New Triad”

Pare

nts

Professionals

Autistic People

Autistic Pride

Source: Gabrielle Bryden

ASAN Autistic Self Advocacy Network

Goals and Methods of ASAN

• Full participation• Full representation• Not just in token amounts, but with real representation and real

ability to influence the outcomes• ”Curriculum for Self-Advocates” (in cooperation with other organizations)• Mentorship, terminology, communication, initiative, organizing

meetings, role of sponsors, hints and tips, guidelines

• ”What you do, and who you are, really counts. That is why this is your organization” (People First’s slogan )

Autinterest 2015Budapest

• Initiated by autistic adults

• Pilot program run by the Eight Points Project

• Objective: to assist and prepare autistic groups for self-advocacy

• i.e. to express their opinions and needs and to complement the

narratives of professionals and parents.

THANK YOU FOR YOUR ATTENTION!

https://www.facebook.com/8Pont

Kriszta Horváthorvat.krisztina@fszk.hu