Sona Simonyan

Hamza was in a year and two months when his mother noticed regress in toddler's speech. Hamsa was slowly forgetting words such as "father", "mother", "ball". The parents consulted with several well-known neurologists and the answers were the same: "the kid has no problem", "you are capricious parent".

 "The problem was emerging day by day. Hamza wasn't paying attention when I called him, was not communicating with fellows," – tells NewscafeHamza’s mother.

 Hamza'sparentshad beensearching for the proper diagnose and treatment in Baku hospitals forthewhole year (2005). Finally Hamza’s family went to Turkey. A doctor in Ankara needed ten minutes to diagnose Hamza Atypical Autism. 

Several studies have shown that early detection of and intervention to treat of Autism Spectrum Disorder is crucial [1]. Early diagnosis results in improvingsocial and communication skills.

 Approximately 80% of parents of children with ASDs notice abnormalities by 24 months - usually delays in speech and language development[2] and, less often, social, play, sensory, motor[3] or medical problems, or regulatory problems related to sleep, eating and attention. The age at first evaluation is related to the level of impairment, such that individuals with more-severe impairments tend to be diagnosed at a younger age.[4] 

 Unfortunately, doctors still lack a non-behavioral clinical test to find out if a child has or will develop Autism Spectrum Disorders- ASDs. Therefore diagnosis is delayed usually by two to four years of age. Researchers are now developingautism biomarkers, for predicting the likelihood of autism, even before behavioral symptoms appear.

 Chairwoman of one of none-governmental organizationsin Azerbaijan working with autism Chichek Memmedli says, that according to their survey there are 4000 children with ASD in the country. But as experts say, the real number is much higher. Various studies in UK revealed interesting facts about Autism[5]Many families with autism live in poverty as it costs on average three times more to raise a child with a severe impairment than a non-disabled child[6].Families with autism often do not get the right support putting them under immense strain. It has been estimated that the divorce rate of parents of children with autism is 60% higher than average[7]. Only 11% of careers who have children with autism work full time, and 70% say the lack of appropriate care facilities stops them working.[8]

  •  54%[9] of teachers at schools do not feel they have had adequate training to teach children with autism.
  •  In 2005[10], the average annual medical costs for Medicaid-enrolled children with ASD were $10,709 per child, which was about six times higher than costs for children without ASD ($1,812).
  •    In addition to medical costs, intensive behavioral interventions for children with ASD cost $40,000 to $60,000 per child per year[11].


 KemaleAgayeva's son studies in the fifth grade. She says their main challenge is the school.Most of the teachers do not understand her son.

 "I explain to teachers repeatedly, they refuse to accept. They always blame him for repetitive behaviors. Believe me, every day I caress him, force him to go to school, but he says: "Everyone hates me. I am not like the others".

 KemaleAgayeva's son got free treatment within the social union "Defectological and Psychological Assistance Center of Autism projects for autistic children. Now these projects are cancelled. Kemale says she has no money to pay for private aid. Families of autistic children in Baku have to pay nearly 40$ for 45 minutes of special Applied Behavior Analysis intervention program. It is minimum 1600$ in a month. The main areas of additional expenditure are transport, toiletries, bedding, food, replacing damaged household items, special toys and equipment[12].

 Psychiatrist Ikram Rustamov says the common mistake while diagnosing autism in Azerbaijan is lack in time. Some elderly doctors try to calm the parents down. When diagnosis delays, treatment becomes less effective.

 "In most cases local doctors (family doctor)check only physical indicators (height, weight, the circumference of head) rarely examinepsycological development, or communication skills inchildren."

 In recent years the quality of diagnosis in Azerbaijan improved than it was in previous years. Doctors become more aware of diagnosis tools. But as doctor Rustamov says the main challenge is that we have no place where speech-language pathologists and a behavioral (ABA) therapist could be trained. Specialists of autism pass certification in foreign countries on their own efforts and funds. There is no state program as it has in Georgia. In Georgia, government funds a program Training for Trainers (TOT). The program supports education of trainers in westerncountries and after finishing study, course trained specialists hold trainings for doctors.

 Toddlers and young children with ASD's are not protected by laws.

 According to laws of Azerbaijan, autism is not considered as a disability. Parents must add some other diagnosis such as intellectual or speaking disability, behavioral disorder to get pension and benefit from social aid.

Member of parliament Melahet Ibrahimova says that it is necessary to set a bill that will consider autism as a disability. Ibrahimova also added that this question would be discussed in autumn session of parliament.


There are common challenges families of autistic children face in public places.

 The Autism Speaks organization created a Managing in a Crisis Situation Plan to serve as a guide to assist families and other team (teachers, emergency personnel, community members). It is important to keep in mind that when child is in full meltdown mode, he is not capable of reasoning, being redirected, or learning replacement skills, says in the plan.  “Ten Things Every Child with Autism Wishes You Knew” a book of Ellen Notbohm also provides useful information for social service workers, teachers and relatives of children with autism. It helps people to understand the world as children with autism experience it: "Crisis situations occur because senses of ASD's has gone into overload. Persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior", says in the book.

 Meltdowns, blow-ups, tantrums or other behaviors of autistic people sometimes cause anger of people around. Reaction of people is horrid. "People don't understand when your child gets in meltdown mode, - says AytenEynalova, -people in public transport wouldtell me "shut him up", "get off the bus" when my son's crying crisis started."

 "That’s why families avoid building social interaction and keep child at home. I accept people as they are. And people are obliged to accept my son as he is."

 Together and Healthy is a Public Union established by Hamza's mother. It holds different activities, campaigns to raise awareness about autism."You cannot explain someone what is autism in 3 minutes, on your way, in a bus. Raising awareness and educating society requires time and much effort," says AytenEynalova.


[1]Nature Clinical Practice Neurology(2008)4, 138-147 doi:10.1038/ncpneuro0731 

[2]De Giacomo A and Fombonne E (1998)Parental recognition of developmental abnormalities in autism.Eur Child Adolesc Psychiatry7: 131–

[3]Charman Tet al. (2000)Testing joint attention, imitation, and play as infancy precursors to language and theory of mind.CognDev15: 481–498

[4]Wiggins LDet al. (2006)Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample.J DevBehavPediatr27(Suppl): S79–S87


[6] B. Dobson, S. Middleton (1998) Paying to Care:The Cost of Childhood Disability. Joseph RowntreeFoundation,York

[7] Bromley, J et al (2004). Mothers supporting children with autistic spectrum disorders: social support, mental health status  and satisfaction with services. Autism, 8(4), pp. 409-423.

[8] Broach, S et. al. (2003), Autism: Rights in Reality, NAS: London.

[9]NFER Teacher Voice Omnibus (February 2011)


[11]Amendah, D., Grosse, S.D., Peacock, G., &Mandell, D.S. (2011). The economic costs of autism: A review. In D. Amaral, D. Geschwind, & G. Dawson (Eds.), Autism spectrum disorders (pp. 1347-1360). Oxford: Oxford University Press.

[12]B. Dobson, S. Middleton (1998) Paying to Care:The Cost of Childhood Disability. Joseph RowntreeFoundation,York.