Table 5 Challenges in implementation of the universal screening program in Iran

3. Shortcomings of screening tools

• Lack of reliable screening tool

• Judgmental bias and lack of valid diagnostic assessment

• “I always use M-CHAT but I don’t get correct results. There is an essential need for cultural adaptation of screening tools (for ASD) in our region.” (Psychiatrist)

• “Autism screening is very similar to using ASQ for developmental screening. ASQ is the same. For example, when we use ASQ for 1-year-old children, we expect to find 10–12% failed results, but our failures are much less than expected rate! It is approximately 1%!” (Psychiatrist)

4. Weakness of the health system

• Shortages of healthcare providers in the field of ASD

• Lack of standard treatment protocols

• Deficiencies in qualified screeners for ASD

• “We definitely cannot say that the improvement of a child’s health condition is related to the services provided for him/her, or is related to the cycle of disease itself. A population-based screening program (universal screening program) could not be the best option while these issues remain unaddressed.” (Pediatrist)

• “Currently, there are very few therapists who are following the standards of treatment. First, we need to make sure that healthcare providers follow treatment standards, and then we can think about the implementation of screening.” (Psychiatrist)

• “Screening is a main focus of the district health centers, and we have no qualified staff in our health centers.” (Administrator)

5. Lack of coordination among service providers

• Lack of integrated system for ASD

• Problem of referrals

• “...Many children come to my clinic with several unnecessary medical test results including MRI, metabolic tests, and so on.” (Pediatrist)

• “The referral system of autism is not performing well. For example, I referred a child with autism to his hometown, nevertheless, after some time, I realized that no service had been provided for him, and nobody had followed the referred child. These problems would be intensified after the implementation of the universal screening program.” (Psychiatrist)

6. Social and ethical issues

• People’s negative attitudes towards the autism

• Unawareness of community about ASD

• Uncertainty about the competence of autism centers

• Lack of strong rational to implement the universal screening program

• “In one case, after discussing with me (as a psychiatrist), the Behvarz contacted the father of the child and told him about probability of his son’s autism disorder. The father became so angry and used offensive language against the Behvarz. Because the father was thinking his son was healthy and she (Behvarz) was labelling his son wrongly! In my opinion, the universal screening program should not be implemented till the adequate awareness and information being provided in the society about autism.” (Psychiatrist)

• “Most people do not want to accept their child’s illness. It is very difficult to convince a parent to admit that his/her child has autism. For instance, I know a man whose son has autism too. When I started to talk about our children’s condition as a same problem, he slipped away. He said that my son doesn’t have autism, he is only a few hyperactive!” (Parent 6)

• Most of the autism rehabilitation centers are private organizations or are affiliated to state welfare organization. We don’t know how these centers perform well in provision of services to children with ASD! (Administrator)

• “The diagnosis of the disorder by itself cannot encourage families to seek an appropriate treatment. Currently, only few numbers of children with ASD have access to appropriate health care. How many of the families can afford their children’s treatment?! Screening is not ethical without having therapeutic and educational interventions for children who would be diagnosed with ASD.” (Therapist)