Issues in the spectrum of associations representing autism Pietro Cirrincione on the autism spectrum AE Vice-president [email protected] @pietrolem Autism-Europe Brussels, Belgium AutismEurope.org @autismeurope Amsterdam, 11 November 2017 /autismeurope.AE Hogeschool van Amsterdam (HvA) (University of Amsterdam) What is the correlation with Autminds theme? InsideOut Traditionally the spectrum about autism is referred to the heterogeneous conditions linked to it, in my contribution the spectrum about autism is referred to the heterogeneous associations representing it and the complex relationships among them. 2/30 Italians like to make associations for everything In Italy associations are around 500 000 (ratio is 1 association to 120 inhabitants!): cultural, sporting and recreational, social cooperatives, foundations, ecclesiastical bodies, volunteer organizations, non-governmental organizations, trade unions, study and research institutions, training, mutual and health care institutions Example of partners for a local event for cats lovers 3/30 Background: my international affiliations Vice-president Autism-Europe aisbl almost 90 member autism organisations from 38 European countries, not yet autistic- led, only individual members AutismEurope.org Information and Communication Technologies Expert Group Member European Disability Forum EDF-FEPH.org Board member World Autism Organization very limited representation WorldAutismOrganisation.com Invited Expert World Wide Web Consortium the main international open standards organization for the Web W3.org 4/30 Background: my Italian affiliations President and captain Autistic Football Club asd Inclusive football sport club of people on and out of the autism spectrum AutisticFootball.club Board member Gruppo Asperger onlus Italian national association of people on the autism spectrum and their families Asperger.it Board member Gruppo Asperger Lazio onlus Italian regional association of people on the autism spectrum and their families AspergerLazio.it member Asperger Pride aps Italian national association led by people on the autism spectrum AspergerPride.it 5/30 Background: my Italian affiliations Athlete member Atletica Roma Acquacetosa Athletics amateur sports club AtleticAcquacetosa.net Obviously, I’m involved in other volunteering associations as active member, but in other fields than autism, so I do not mention here... 6/30 Background: Autism-Europe collaborations 7/30 Background: my Italian collaborations Cooperativa Garibaldi Work cooperative made by people on the autism spectrum Garibaldi.coop Giuliaparla onlus cooperative of caregivers for autism Giuliaparla.it OfficinaMente cognitive and behavioural psychologists practice OfficinaMente.org culturAutismo cultural association by professionals for autism culturAutismo.it Studio Caretto e associati association of psychologists for autism CarettoEAssociati.it 8/30 Background: my Italian cooperations Laboratorio di Esplorazione Multimediale association of social promotion led by people on the autism spectrum, born from previous work cooperative LEM LEM-aps.org Barikama’ Microcredit project led by African people and one person on the autism spectrum in Italy Barikama.altervista.org SS Romulea Football Sport association SSRomulea.it 9/30 Background: my Italian cooperations Associazione Nazionale Genitori Soggetti Autistici The biggest parent-led Italian association for autism ANGSA.it Associazione Nazionale Famiglie di Persone con Disabilità Intellettiva e/o Relazionale the biggest and oldest parent-led association for intellectual and relational disabilities ANFFAS.net Federazione Italiana per il Superamento dell’Handicap Italian Federation of associations about disabilities FISHonlus.it Together Gruppo Asperger onlus we form National Coordination about autism 10/30 Background: my Italian cooperations Istituto Superiore di Sanità Italian National Health Institute ISS.it Sapienza University of Rome Department of Social and Developmental Psychology dip38.psi.uniroma1.it Aglioti LAB Social & Cognitive Neurosciences laboratory AgliotiLAB.org Società Italiana di Neuropsichiatria dell’Infanzia e dell’Adolescenza Italian Society of Child Neuropsichiatry Sinpia.eu 11/30 Examples: World Autism Awareness Day events 12/30 Examples: World Autism Awareness Day events 13/30 Examples: World Autism Awareness Day events 14/30 Examples: Autistic Pride Day events 15/30 Please note modern autism definition Report of the Special Rapporteur Report of the Special Rapporteur on the rights of persons with disabilities (12/01/2016) "37. The Convention on the Rights of Persons with Disabilities has accelerated the process of establishing organizations of self-advocates with intellectual disabilities, of autistic persons and of other individuals who may need extensive support to express their positions. Organizations of parents and relatives of persons requiring support have often played a role in providing such support and one can find organizations that include parents as well as self- advocates. The role of parents in such organizations should increasingly move towards the provision of support, with self-advocates in full control. States need to ensure that the will and preferences of persons with disabilities themselves are given priority.[…]" http://ap.ohchr.org/documents/dpage_e.aspx?si=A/HRC/31/62 http://www.ohchr.org/EN/Issues/Disability/SRDisabilities/Pages/SRDisabilitiesIndex.aspx 19/30 Self-advocacy and direct participation Self-advocacy Self-advocacy is the defence of their rights in first person and refers to the civil rights movement of persons with disabilities, born from the larger civil rights movement of the '60s and '70s. People with disabilities have the right to take control of their lives, talking for themselves, they can always ask for the support of others. Direct participation and UN CRPD “In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.” Article 4, paragraph 3 of the Convention on the Rights of Persons with Disabilities 20/30 AE process for direct participation Autism-Europe is open to comprise members from the whole autism spectrum, including organizations led by people on the autism spectrum. Informal meetings among AE members and local autistic groups are conducted regularly. In 2015 during an AE board meeting, two board members on the autism spectrum held a workshop on how to ensure that autism organizations are representative of the whole spectrum http://www.autismeurope.org/files/files/conference-bcn-2015/involving-self-advocates-barcel ona-03-05-2015.pdf In 2016 a person on the autism spectrum was elected as the vice-president of AE and one AE full member has chosen to have a person on the autism spectrum represent them for all AE meetings and activities (the Dutch member!). In some European countries organizations led exclusively by people on the autism spectrum already exist for many years but none of them are yet AE members. Publications, activities, meetings and governing bodies of autism organizations have to be as accessible as possible by people from whole autism spectrum, implementing UN CRPD, fulfilling in practice disability movement historical right: "NOTHING ABOUT US WITHOUT US”. 21/30 ITALY: milestones 1/2 1977 – Public mainstream schools for all students: no more special classes/schools 1992 – Law 104/1992 "Framework Law for the assistance, social integration and the rights of disabled persons": a very strong jurisprudence about disabilities, in some aspects strongest than UN CRPD 2005 – Scientific Guidelines about autism by Sinpia (Italian Society of Child and Adolescent Neuropsychiatry) 2007 – Autism table sponsored by the Ministry of Health 2008 – Founding of Fantasia (National Federation of autism spectrum associations) 2009 – Ratification of UN CRPD and Optional protocol 22/30 ITALY: milestones 2/2 2011 – Scientific Guidelines about autism spectrum interventions in children and adolescents by ISS (National Institute of Health) and stakeholders 2012 – Guidelines on autism: Agreement between the Government, Regions and local authorities in the Unified Conference of State and Regions 2015 – National Law 134/15 on the autism spectrum: it places intervention for autism among the essential services provided by the Italian healthcare system. It also updates guidelines for diagnosis and care and promotes research in the field 2015 – Law 208/15 (Stability Law 2016) sets "Fund for the care of individuals with autism spectrum disorder" with an annual budget of 5 million Euros 2016 – Decree for the update of the Essential Levels of Assistance (LEA 2016): the NHS will ensure people on the autism spectrum: early diagnosis, care and individualized treatment, through the use of methods and tools based on the best scientific evidence; updating the guidelines every three years 23/30 ITALY: situation in education Inclusive mainstream school for all but often there is lack of qualified personnel. Problems: ● implementation ● public funds ● quality of training of support teachers Limits hard to assure: special teachers/students with disabilities = 1/2, 1/1 in some cases special teachers hours/week = 9 to 25 students/students with disabilities needing intensive support = 20/1 Peer support Some students