Assoc. prof. d-r Tatjana Zorcecnational coordinator for autism

University children’s hospital, Skopje, Macedonia

Living with autism in Republic of 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 collect public health data • to provide training • 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

…

Members•Albania • Slovenia

• Bosnia and Herzegovina • Croatia •Kosovo

•Montenegro • Bulgaria• Romania•Macedoni

…

• 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:

- demographic characteristics

- affected child characteristics

- service encounters and

- parent/caregiver perceptions.

CharacteristicAlbania

(n=192)Croatia (n=168)

Macedonia

(n=60)

Romania

(n=137)

Turkey

(n=277)Total (n=834)

Gender, N (%)            

Male 125 (65%) 124 (74%) 56 (93%) 104 (80%) 221 (80%) 630 (76%)

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 152 (79%) 19 (12%) 26 (43%) 41 (32%) 164 (60%) 402 (50%)

Asperger’s syndrome 6 (3%) 5 (3%) 4 (7%) 8 (6%) 5 (2%) 28 (3%)

PDD-NOS 5 (3%) 21 (13%) 1 (1%) 5 (4%) 69 (25%) 101 (13%)

PDD 7 (4%) 46 (29%) 0 (0%) 3 (2%) 27 (10%) 83 (10%)

ASD 21 (11%) 49 (29%) 25 (42%) 66 (52%) 7 (3%) 164 (20%)

Other 1 (1%) 22 (14%) 4 (7%) 4 (3%) 2 (1%) 33 (4%)

Verbal ability, N (%)            

Does not talk 49 (26%) 58 (35%) 22 (37%) 30 (23%) 54 (19%) 213 (26%)

Uses single words only 59 (31%) 27 (16%) 17 (29%) 24 (18%) 68 (25%) 195 (24%)

Uses 2- or 2-word phrases 54 (28%) 43 (26%) 12 (20%) 22 (17%) 66 (24%) 197 (24%)

Uses >4 word-sentences 23 (12%) 23 (14%) 2 (3%) 33 (25%) 35 (13%) 116 (14%)

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 50 (26%) 126 (77%) 53 (88%) 96 (83%) 180 (66%) 505 (63%)

My child’s doctor 46 (24%) 18 (11%) 12 (20%) 60 (52%) 28 (10%) 164 (20%)

My child’s teacher 24 (13%) 52 (32%) 17 (28%) 22 (19%) 146 (54%) 261 (33%)

Other ASD parents 52 (27%) 104 (64%) 41 (68%) 69 (60%) 98 (36%) 364 (45%)

Other providers 114 (59%) 109 (67%) 47 (78%) 93 (82%) 54 (20%) 417 (52%)

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%

CURRENT SITUATION

Negative aspects

• cases of autism in Macedonia rapidly increasing in the last decade

• still no registry for ASD children

• no specialized center for autism

• deficit in daily care centers

• no fully trained professionals

• educational barriers

• still no adapted psychometric instruments

• use of alternative medicine

• stigma

…Positive aspects

• raised awareness

• inclusion of the children with special needs in regular school or special classes (min. of education)

• intention to create national strategy (min. of health)

• preparations for national registry (min. of health)

• 2 daily care centers (min. of socical affairs)

…

• plans to open center for autism (min. of health)

• ongoing training for professionals (UCLA-USA, min. of health)

• adaptation of ADOS (min. of health)

• national coordinator part of the SEAN network (min. of health)

Biggest chalenges

• to create specialy trained team of professionals

• to open specialized center for autism

• national registry