Assoc. prof. d-r Tatjana Zorcec national coordinator for autism University children’s hospital, Skopje, Macedonia

South East European Autism Network (SEAN) in collaboration with Autism speaks SEAN was established to enhance the lives of individuals with autism, other developmental disorders and related mental health conditions in Southeast Europe

… Goals of SEAN to raise public and professional awareness to raise public and professional awareness to collect public health data to collect public health data to provide training to provide training to provide evidence based services for children and adults to provide evidence based services for children and adults to meet regularly to review project status and progress and to produce guidelines and recommendations on public health issues related to autism and developmental disabilities to meet regularly to review project status and progress and to produce guidelines and recommendations on public health issues related to autism and developmental disabilities

…Members Albania Albania Slovenia Slovenia Bosnia and Herzegovina Bosnia and Herzegovina Croatia Croatia Kosovo Kosovo Montenegro Montenegro Bulgaria Bulgaria Romania Romania Macedoni Macedoni

… SEAN developed the Caregiver Needs Survey SEAN developed the Caregiver Needs Survey The Caregiver Needs Survey is intended for primary caregivers of children (<18 years) with ASD and covers the following domains: The Caregiver Needs Survey is intended for primary caregivers of children (<18 years) with ASD and covers the following domains: - demographic characteristics - affected child characteristics - service encounters and - parent/caregiver perceptions.

Characteristic Albania (n=192) Croatia (n=168) Macedonia (n=60) Romania (n=137) Turkey(n=277) Total (n=834) Gender, N (%) Male Male 125 (65%) 124 (74%) 56 (93%) 104 (80%) 221 (80%) 630 (76%) Female Female 67 (34%) 43 (26%) 4 (7%) 26 (20%) 56 (20%) 196 (24%) Age in years, mean (SD) 7.5 (2.8) 6.0 (1.8) 5.7 (3.7) 6.2 (3.1) 9.0 (4.4) 7.4 (3.5) Current diagnosis, N (%) Autism/Autistic disorder Autism/Autistic disorder 152 (79%) 19 (12%) 26 (43%) 41 (32%) 164 (60%) 402 (50%) Asperger’s syndrome Asperger’s syndrome 6 (3%) 5 (3%) 4 (7%) 8 (6%) 5 (2%) 28 (3%) PDD-NOS PDD-NOS 5 (3%) 21 (13%) 1 (1%) 5 (4%) 69 (25%) 101 (13%) 101 (13%) PDD PDD 7 (4%) 46 (29%) 0 (0%) 3 (2%) 27 (10%) 83 (10%) 83 (10%) ASD ASD 21 (11%) 49 (29%) 25 (42%) 66 (52%) 7 (3%) 164 (20%) Other Other 1 (1%) 22 (14%) 4 (7%) 4 (3%) 2 (1%) 33 (4%) Verbal ability, N (%) Does not talk Does not talk 49 (26%) 58 (35%) 22 (37%) 30 (23%) 54 (19%) 213 (26%) 213 (26%) Uses single words only Uses single words only 59 (31%) 27 (16%) 17 (29%) 24 (18%) 68 (25%) 195 (24%) Uses 2- or 2-word phrases Uses 2- or 2-word phrases 54 (28%) 43 (26%) 12 (20%) 22 (17%) 66 (24%) 197 (24%) Uses >4 word-sentences Uses >4 word-sentences 23 (12%) 23 (14%) 2 (3%) 33 (25%) 35 (13%) 116 (14%) Uses complex sentences Uses complex sentences 7 (4%) 16 (10%) 7 (12%) 21 (16%) 54 (19%) 105 (13%)

Characteristic, N (%) Albania (n=192) Croatia (n=168) Macedonia (n=60) Romania (n=137) Turkey(n=277) Total (n=834) Receiving training / assistance 72 (38%) 42 (26%) 10 (17%) 29 (25%) 35 (13%) 189 (24%) Receiving government aid 131 (68%) 110 (69%) 37 (64%) 26 (23%) 123 (46%) 427 (54%) Participate in advocacy groups 17 (9%) 43 (26%) 11 (19%) 13 (11%) 18 (7%) 102 (13%) ASD information sources The Internet The Internet 50 (26%) 126 (77%) 53 (88%) 96 (83%) 180 (66%) 505 (63%) My child’s doctor My child’s doctor 46 (24%) 18 (11%) 12 (20%) 60 (52%) 28 (10%) 164 (20%) My child’s teacher My child’s teacher 24 (13%) 52 (32%) 17 (28%) 22 (19%) 146 (54%) 261 (33%) Other ASD parents Other ASD parents 52 (27%) 104 (64%) 41 (68%) 69 (60%) 98 (36%) 364 (45%) Other providers Other providers 114 (59%) 109 (67%) 47 (78%) 93 (82%) 54 (20%) 417 (52%) Other Other 30 (16%) 15 (9%) 3 (5%) 10 (9%) 200 (74%) 258 (32%)

All countries, N (%)* Child’s autism has caused financial problems for family 544 (68%) Family members have stopped working because of child’s autism 344 (43%) Family members have cut down on work hours because of child’s autism 321 (41%) * In Macedonia majority of parents are paying services to private professionals

Dificulties in and need to improve Macedonia, % Health care services 72% Educational possibilities 65% Social care system 52%

C URRENT SITUATION Negative aspects cases of autism in Macedonia rapidly increasing in the last decade cases of autism in Macedonia rapidly increasing in the last decade still no registry for ASD children still no registry for ASD children no specialized center for autism no specialized center for autism deficit in daily care centers deficit in daily care centers no fully trained professionals no fully trained professionals educational barriers educational barriers still no adapted psychometric instruments still no adapted psychometric instruments use of alternative medicine use of alternative medicine stigma stigma

… Positive aspects raised awareness raised awareness inclusion of the children with special needs in regular school or special classes (min. of education) inclusion of the children with special needs in regular school or special classes (min. of education) intention to create national strategy (min. of health) intention to create national strategy (min. of health) preparations for national registry (min. of health) preparations for national registry (min. of health) 2 daily care centers (min. of socical affairs) 2 daily care centers (min. of socical affairs)

… plans to open center for autism (min. of health) plans to open center for autism (min. of health) ongoing training for professionals (UCLA-USA, min. of health) ongoing training for professionals (UCLA-USA, min. of health) adaptation of ADOS (min. of health) adaptation of ADOS (min. of health) national coordinator part of the SEAN network (min. of health) national coordinator part of the SEAN network (min. of health)

Biggest chalenges to create specialy trained team of professionals to create specialy trained team of professionals to open specialized center for autism to open specialized center for autism national registry national registry