**4. Autism in Iran**

The Islamic Republic of Iran, formerly known as Persia, is located in the Middle East. The capital city is Tehran. Iranian society is distinct from other Islamic societies of the Middle-East and Central Eurasia in terms of its long history of civilisation, its geographical location, separate language (Persian) and religious denomination (Shia Muslim).

It is a vast country of 1.65 million sq km, extending in the north from the Caspian Sea to the Persian Gulf, Strait of Hormuz, and Oman Sea in the south, and from Afghanistan and Paki‐ stan in the east to Iraq and Turkey in the west. Persians (51% population) are the largest eth‐ nic group in the Republic within the total population of 74.8 million. The main minorities are Azeri (24%), Gilaki and Mazandarani (8%), and Kurds (7%). People are mainly Muslims (89% Shi'a Muslims and 9% Sunni Muslims). Iran became an Islamic Republic in 1979 and is divided into 31 provinces, each of which is headed by a governor-general appointed by the Minister of the Interior.

Children with ASD will usually be diagnosed by medical doctors either privately or through child and family clinics provided by voluntary organisations. State-funded special schools are provided through the Iranian Special Education Organisation although many parents may opt for private schooling. In addition, parents will arrange private therapy for their children. For children more severely affected or with other conditions such as intellectual disability, day centre placements are available through the Iranian State Welfare Organisa‐ tion. However, these services are only available in larger cities and probably only for more affluent families. Provision for adult services is mostly through private or voluntary organi‐ sations that also rely heavily on parental fees.

Iran is one of the few countries that has a national screening programme for autism prior to children's entry to compulsory education at age 6. An analysis of data obtained on over 1.32 million children aged 5 years of age screened over a three-year period, yielded an overall Iranian prevalence of 6.26 per 10,000 [1]. Although this rate is similar to that previously re‐ ported for certain European countries and for Hong Kong, it is much lower than those re‐ ported for Sweden, USA and England [29].

#### **4.1. Indicators of autism in Iran**

through a detailed, structured interview with parents. However a multi-disciplinary as‐ sessment by experienced clinicians is also recommended including a physical examination along with developmental and/or psychometric evaluations. These will enable a differen‐ tial diagnosis to be made for autism from other conditions in which there is overlap of

Such assessments can be time-consuming and costly. Their efficiency is determined by the referrals from the screening tests. If individuals are screened as positive for autism but are not subsequently diagnosed as having autism (false positives) this can mean wasted efforts by the diagnostic team. The converse is also concerning. Children may screen as negative for autism but had they been assessed, they might have been given a diagnosis of autism (false negatives). Thus the effectiveness of the screening test needs to be assessed in terms of its sensitivity (true positives are identified) and its specificity (false negatives are avoided). Thus the choice of items that are included in the screening test is crucial. To date, the screen‐ ing tools have been developed within Western societies and given the earlier comments about cultural influences, it is conceivable that at least some of these items may not be suited for use in other cultures. The risk then is that the efficiency of the screening tool is diminish‐ ed within that society [11]. Indeed the same argument may apply when screening individu‐

The Islamic Republic of Iran, formerly known as Persia, is located in the Middle East. The capital city is Tehran. Iranian society is distinct from other Islamic societies of the Middle-East and Central Eurasia in terms of its long history of civilisation, its geographical location,

It is a vast country of 1.65 million sq km, extending in the north from the Caspian Sea to the Persian Gulf, Strait of Hormuz, and Oman Sea in the south, and from Afghanistan and Paki‐ stan in the east to Iraq and Turkey in the west. Persians (51% population) are the largest eth‐ nic group in the Republic within the total population of 74.8 million. The main minorities are Azeri (24%), Gilaki and Mazandarani (8%), and Kurds (7%). People are mainly Muslims (89% Shi'a Muslims and 9% Sunni Muslims). Iran became an Islamic Republic in 1979 and is divided into 31 provinces, each of which is headed by a governor-general appointed by the

Children with ASD will usually be diagnosed by medical doctors either privately or through child and family clinics provided by voluntary organisations. State-funded special schools are provided through the Iranian Special Education Organisation although many parents may opt for private schooling. In addition, parents will arrange private therapy for their children. For children more severely affected or with other conditions such as intellectual disability, day centre placements are available through the Iranian State Welfare Organisa‐ tion. However, these services are only available in larger cities and probably only for more

separate language (Persian) and religious denomination (Shia Muslim).

symptomology [28].

32 Recent Advances in Autism Spectrum Disorders - Volume I

**4. Autism in Iran**

Minister of the Interior.

als from immigrant communities in Western countries.

The main aim of the two studies reported in this chapter was to identify the most common indicators of autism for Iranian parents whose children had been given a diagnosis of au‐ tism. As argued above, this investigation would identify items for use in screening tests that would be culturally sensitive for an Iranian culture. However the initial pool of items would be drawn from those behaviours that define autism internationally according to DSM-IV [7] and ICHD-10 [30]. These were taken from two commonly used scales for autism – the Gil‐ liam Rating Scale for Autism (GARS) and the Autism Diagnostic Interview – revised (ADI-R). Although developed in the USA and the UK respectively, they have been translated for use in other countries.

The most common indicators of autism would be chosen as those that best discriminated children with a diagnosis of autism from age peers who were normally developing; from those who were considered to have an intellectual disability and from those who were ini‐ tially suspected of having autism but were not diagnosed as such following assessment.

The resulting set of indicators would have particular relevance for the development of fur‐ ther screening tools in Iran but these findings might have wider applicability to other Mus‐ lim cultures and non-Western societies.

#### **4.2. Study 1: Screening for autism**

The Gilliam Autism Rating Scale - Second edition GARS ll [4] was developed in the United States of America and is based on DSM-IV diagnostic criteria for autism. It is widely used in hospitals, school and clinics across the USA with good psychometric properties which sub‐ sequent evaluation studies have confirmed [40]. The main reservations concerning its use, centre on the cut-off points that are taken to be indicative of autism. The consensus is that these should be set at a lower level than recommended in the test manual [41].

This tool takes the form of a behaviour checklist developed for use with children and youth aged 3 to 22 years. It consists of 42 items grouped into three subscales: Stereotyped Behav‐ iours, Communication, and Social Interaction which are combined into a standard score called the "Autism Index" with higher scores indicative of ASD. A further 14 items contrib‐ ute data about the child's development during the first three years of life which are used to supplement information about the child's current level of functioning. Reliability and validi‐ ty data for the English version of the test is available based on a normative sample of 1,107 individuals with ASD and 328 non-ASD persons and those with other developmental disa‐ bilities. Coefficients of reliability (internal consistency and test-retest) for the subscales and Autism Index range from 0.80 to 0.90.

developing normally were given the ratings scales at a group meeting and asked to return

Indicators of Autism in Iranian Children http://dx.doi.org/10.5772/52853 35

In all data was obtained on 532 children: 390 with autism; 55 intellectually disabled and 87 normally developing. Their mean age was 10.5 years (SD 3.1). However those with autism were significantly older (mean age 10.9 yrs) than those in the other two groups (9.4 years). As commonly found with autism; many more boys than girls were identified (81% v 19%); The gender ratio for the children with ID was (49% male v 51% female) and normally devel‐

The children were recruited from four provinces in Iran: Tehran (35%) Alborz (21%) Razavi Khorasan (25%) and Western Azerbaijan (19%). Proportionately more children with ID came from Tehran Province but children with autism and those developing normally came from

In seeking to identify the items that best discriminated the three groups from the 42 items included in the GARS scale the items were arranged into those that the highest percentage of children with autism displayed but with the least percentage of children with intellectual disability and those who were developing normally. The top 16 items were then selected us‐

**•** Normally developing children did not show the behaviour or it was shown by fewer than

**•** The proportion of children with intellectual disability who showed the behaviour was

Our aim was to reflect the range of behaviours that can be indicative of the variation among

Table 1 summarises the percentage of children within each group who were sometimes or frequently observed to show these behaviours. These are ordered by those most commonly

These 16 items were then tested for their scaling properties. The Chronbach alpha of internal

A total score could be calculated for each child on these 16 items with a minimum score of 0 (all items scored as never or rarely seen) and a maximum of 16 (all items scored as some‐ times or frequently observed). Table 2 presents the summary statistics for the three groups of children on this computed measure as well as for the total group. With this sample no

seen in children with autism. The subscale from which the item came is also noted.

**•** Over one-third of children with ASD showed the behaviour AND

children with autism and yet maximised their distinctiveness.

reliability was acceptably high at 0.89 (N=422).

ceiling effects were present on the scale.

fewer than half of the proportion of children with a diagnosis of autism.

them within two weeks and 97% did so.

*4.2.3. Study participants*

all four Provinces.

*4.2.4. Item analysis*

ing the following criteria:

12% of these children AND

oping (64% male v 36% female).

For the purpose of this study the first author translated the GARS II assessment tool from English to Persian. The Iranian version was back-translated and reviewed for language clari‐ ty and appropriateness for use in Iranian culture. The tool was then pilot tested with 15 Ira‐ nian families with a child who had screened positive for ASD and included parents from different socio-economic backgrounds. Five of the 42 questions were unclear to parents and these items were reworded for greater clarity.

#### *4.2.1. Recruiting samples*

Three groups of children aged between 3 and 16 years were recruited: those who had been given a diagnosis of autism; those diagnosed as having an intellectual disability and those whose development was considered to be normal. Recruitment took place in four Provinces of Iran in order to achieve a geographical spread.

Children with ASD in the age range 5 to 10 years generally received a confirmed diagnosis from trained diagnosticians from the Iranian Special Education Organisation (see Samadi et al [1] for further details) or were admitted to the ASD special schools based on being at high risk of ASD which meant that they would be re-evaluated one year after their registration. Other children with ASD above or below this age range, had received a confirmed diagnosis from the paediatrician or neurologists based on DSM IV criteria.

All the children with an Intellectual Disability aged 5 to 16 had received an approved diag‐ nosis from ISEO and children under 5 received a confirmation of diagnosis from the paedia‐ trician based on their developmental assessments and clinical presentation (i.e. Down Syndrome or other conditions associated with an intellectual disability).

Parents of children with ASD and ID were recruited from special schools (both public and private) whereas parents of preschool children were recruited from mother and child clinics. The normally developing sample were chosen from mother and child clinics, schools and from membership of the Parents and Teachers Association which has branches in all the cit‐ ies in Iran.

#### *4.2.2. Procedure*

All parents were informed about the aims of the study initially through a written notifica‐ tion sent from the clinic or schools but these were repeated verbally when the first author met the parents when their consent to participate was obtained. Parents of children with ASD and children with ID were met individually, the written instructions for completing the scales were explained to them and they were assisted to complete the ratings scales as necessary. Also 30 parents of normally developing children in Alborz province were met personally during eight days in two schools. The remainder of parents whose children were developing normally were given the ratings scales at a group meeting and asked to return them within two weeks and 97% did so.

#### *4.2.3. Study participants*

ty data for the English version of the test is available based on a normative sample of 1,107 individuals with ASD and 328 non-ASD persons and those with other developmental disa‐ bilities. Coefficients of reliability (internal consistency and test-retest) for the subscales and

For the purpose of this study the first author translated the GARS II assessment tool from English to Persian. The Iranian version was back-translated and reviewed for language clari‐ ty and appropriateness for use in Iranian culture. The tool was then pilot tested with 15 Ira‐ nian families with a child who had screened positive for ASD and included parents from different socio-economic backgrounds. Five of the 42 questions were unclear to parents and

Three groups of children aged between 3 and 16 years were recruited: those who had been given a diagnosis of autism; those diagnosed as having an intellectual disability and those whose development was considered to be normal. Recruitment took place in four Provinces

Children with ASD in the age range 5 to 10 years generally received a confirmed diagnosis from trained diagnosticians from the Iranian Special Education Organisation (see Samadi et al [1] for further details) or were admitted to the ASD special schools based on being at high risk of ASD which meant that they would be re-evaluated one year after their registration. Other children with ASD above or below this age range, had received a confirmed diagnosis

All the children with an Intellectual Disability aged 5 to 16 had received an approved diag‐ nosis from ISEO and children under 5 received a confirmation of diagnosis from the paedia‐ trician based on their developmental assessments and clinical presentation (i.e. Down

Parents of children with ASD and ID were recruited from special schools (both public and private) whereas parents of preschool children were recruited from mother and child clinics. The normally developing sample were chosen from mother and child clinics, schools and from membership of the Parents and Teachers Association which has branches in all the cit‐

All parents were informed about the aims of the study initially through a written notifica‐ tion sent from the clinic or schools but these were repeated verbally when the first author met the parents when their consent to participate was obtained. Parents of children with ASD and children with ID were met individually, the written instructions for completing the scales were explained to them and they were assisted to complete the ratings scales as necessary. Also 30 parents of normally developing children in Alborz province were met personally during eight days in two schools. The remainder of parents whose children were

Autism Index range from 0.80 to 0.90.

34 Recent Advances in Autism Spectrum Disorders - Volume I

these items were reworded for greater clarity.

of Iran in order to achieve a geographical spread.

from the paediatrician or neurologists based on DSM IV criteria.

Syndrome or other conditions associated with an intellectual disability).

*4.2.1. Recruiting samples*

ies in Iran.

*4.2.2. Procedure*

In all data was obtained on 532 children: 390 with autism; 55 intellectually disabled and 87 normally developing. Their mean age was 10.5 years (SD 3.1). However those with autism were significantly older (mean age 10.9 yrs) than those in the other two groups (9.4 years). As commonly found with autism; many more boys than girls were identified (81% v 19%); The gender ratio for the children with ID was (49% male v 51% female) and normally devel‐ oping (64% male v 36% female).

The children were recruited from four provinces in Iran: Tehran (35%) Alborz (21%) Razavi Khorasan (25%) and Western Azerbaijan (19%). Proportionately more children with ID came from Tehran Province but children with autism and those developing normally came from all four Provinces.

#### *4.2.4. Item analysis*

In seeking to identify the items that best discriminated the three groups from the 42 items included in the GARS scale the items were arranged into those that the highest percentage of children with autism displayed but with the least percentage of children with intellectual disability and those who were developing normally. The top 16 items were then selected us‐ ing the following criteria:


Our aim was to reflect the range of behaviours that can be indicative of the variation among children with autism and yet maximised their distinctiveness.

Table 1 summarises the percentage of children within each group who were sometimes or frequently observed to show these behaviours. These are ordered by those most commonly seen in children with autism. The subscale from which the item came is also noted.

These 16 items were then tested for their scaling properties. The Chronbach alpha of internal reliability was acceptably high at 0.89 (N=422).

A total score could be calculated for each child on these 16 items with a minimum score of 0 (all items scored as never or rarely seen) and a maximum of 16 (all items scored as some‐ times or frequently observed). Table 2 presents the summary statistics for the three groups of children on this computed measure as well as for the total group. With this sample no ceiling effects were present on the scale.


**Type of development N Mean Std. Deviation Median Minimum Maximum**

The between group differences were statistically significant (F=252.6; p<0.001) as was the variation within each group as indicated by the Standard Deviations with normally devel‐

Using the summary scores it was also possible to check if these indicators varied by age of the child. The Pearson Product Moment correlation was small although significant r=0.138 (p<0.005) with older children having higher scores. As regards child's gender, boys had sig‐ nificantly higher scores than girls (Mean 6.46 v 4.72: F=11.06: p<0.005). Scores were also higher when fathers were the sole informants (mean 7.69) compared to mothers (mean 5.56) (F=4.98:p<0.01). Also those children residing in the Provinces of Tehran and Mashahd (means 6.92 and 6.71) had higher scores than children in two other provinces Alborz (Mean

A regression analysis was then used to control for the inter-relationships among these var‐ iables and with the children's grouping of autism, ID and normal development. Indeed it was children with autism who had the highest Beta scores (β=7.89: 95% Confidence Inter‐ val [CI] 7.25-8.49: t=24.91 p<0.001) and the effect of child's age and gender were not signif‐ icant. However children living in Tehran (β =1.53: CI 0.75-2.30: t=3.86 p<0.001) and Mashahd Provinces (β=1.45: CI 0.60-2.30: t=3.34 p<0.001) tended to score higher than in the

Finally correlations were computed between the scores on the 16 items with the total scores on the GARS ratings for the three subscales and the total score. All correlations were statisti‐ cally significant (p<0.001) but highest with the total score and social interaction subscale and

**Correlations 16 items score with ... Pearson Product Moment**

Stereotyped behaviours subscale r=0.861\*\* Communication r=0.445\*\* Social Interactions r=0.902\*\* Total score on GARS 42 items r=0.903\*\*

**Correlations**

Intellectual Disability 41 1.41 1.67 1.00 .00 6.00 Normally developing 87 .51 .76 .00 .00 2.00

**Table 2.** Mean, SDs, Median and range scores on 16 items for the three groups (N=422)

5.04) and Western Azarbayjan mean 4.61).

lowest with the communication subscale.

**Table 3.** Correlations between 16 item scale and GARS scores

other two provinces.

oping children showing the least variation and those with autism the most

294 8.31 3.71 8.00 1.00 15.00

Indicators of Autism in Iranian Children http://dx.doi.org/10.5772/52853 37

Autism Spectrum Disorder

\*Communication items are scored on N=422 for whom these items were rated; otherwise n=532.

**Table 1.** The percentage of Iranian children in each sample who were sometimes or frequently observed to show the selected behaviours.


**Table 2.** Mean, SDs, Median and range scores on 16 items for the three groups (N=422)

**Subscale Item ASD Intellectual**

Makes high-pitched sounds (e.g. eee-eee-eee) or

required or desirable such as in games or learning

Social Interaction Laughs, giggles, cries inappropriately 56.5% 21.8% 0%

other vocalizations for self-stimulation

Communication Uses gestures instead of speech or uses signs to

Social Interaction Withdraws, remains aloof or acts stand-offish in

Social Interaction Does not imitate other people when imitation is

Social Interaction Stares or looks unhappy or unexcited when

Social Interaction Behaves in a unreasonably fearful or frightened

Communication Does not initiate conversations with peers or

Social Interaction Shows no recognition that a person is present (i.e. looks through people)

Social Interaction Avoids eye contact, looks away when someone looks at him or her

Communication Uses the word I inappropriately e.g. does not say I

to refer to self)

5 secs or more

hair)

Stares at hands, objects or items in the environment for at least 5 secs

Flicks fingers rapidly in front of eyes for periods of

Smells or sniffs objects (e.g. toys, person's hand,

\*Communication items are scored on N=422 for whom these items were rated; otherwise n=532.

Flaps hands or fingers in front of face or at sides 42.4% 9.1% 0%

Whirls, turns in circles 34.1% 14.5% 4.6%

**Table 1.** The percentage of Iranian children in each sample who were sometimes or frequently observed to show the

praised humoured or entertained

obtain objects

36 Recent Advances in Autism Spectrum Disorders - Volume I

group situations

activities

manner

adults

Stereotyped behaviour

Stereotyped behaviour

Stereotyped behaviour

Stereotyped behaviour

Stereotyped behaviour

Stereotyped behaviour

selected behaviours.

**Disability**

67.0% 0% 2.3%

66.2% 21.8% 0%

65.4% 12.7% 6.9%

65.0% 3.6% 0%

60.5% 0% 4.6%

55.6% 12.2% 0%

55.4% 9.8% 11.5%

50.0% 3.6% 0%

48.5% 16.4% 11.5%

46.7% 12.7% 4.2%

45.7% 14.5% 0%

43.6% 12.7% 0%

34.4% 3.6% 0%

**Non-disabled**

The between group differences were statistically significant (F=252.6; p<0.001) as was the variation within each group as indicated by the Standard Deviations with normally devel‐ oping children showing the least variation and those with autism the most

Using the summary scores it was also possible to check if these indicators varied by age of the child. The Pearson Product Moment correlation was small although significant r=0.138 (p<0.005) with older children having higher scores. As regards child's gender, boys had sig‐ nificantly higher scores than girls (Mean 6.46 v 4.72: F=11.06: p<0.005). Scores were also higher when fathers were the sole informants (mean 7.69) compared to mothers (mean 5.56) (F=4.98:p<0.01). Also those children residing in the Provinces of Tehran and Mashahd (means 6.92 and 6.71) had higher scores than children in two other provinces Alborz (Mean 5.04) and Western Azarbayjan mean 4.61).

A regression analysis was then used to control for the inter-relationships among these var‐ iables and with the children's grouping of autism, ID and normal development. Indeed it was children with autism who had the highest Beta scores (β=7.89: 95% Confidence Inter‐ val [CI] 7.25-8.49: t=24.91 p<0.001) and the effect of child's age and gender were not signif‐ icant. However children living in Tehran (β =1.53: CI 0.75-2.30: t=3.86 p<0.001) and Mashahd Provinces (β=1.45: CI 0.60-2.30: t=3.34 p<0.001) tended to score higher than in the other two provinces.

Finally correlations were computed between the scores on the 16 items with the total scores on the GARS ratings for the three subscales and the total score. All correlations were statisti‐ cally significant (p<0.001) but highest with the total score and social interaction subscale and lowest with the communication subscale.


#### *4.2.5. Conclusions*

Based on the 42 items included in the GARS Scale, it was possible to identify 16 items based on parental ratings that efficiently discriminated between children with autism and those who were normally developing and those with intellectual disabilities. These items were drawn in the main from the social interaction (N=7) and stereotyped behaviour subscales (N=6) with fewer coming from the Communication domain (N=3). A further paper provides further data on the utility of GARS with an Iranian population and on the sensitivity and specificity of the 16 item as a screening tool [31].

Following the diagnostic interview, 333 children (84%) were confirmed in having autism; for 20 (5%) the diagnosis was uncertain and 44 (11%) were thought not to have autism. For the

Indicators of Autism in Iranian Children http://dx.doi.org/10.5772/52853 39

Of the 397 children 80% were male and 20% female. Their mean age was 7.3 years (range 5 to 14 years). In all, 32% were only children and a further 43% had one sibling with 25% hav‐ ing two to six siblings. In 23 families (5.8%), there was another child with a developmental disability although 30% of families reported having a person with mental or developmental

The mean age of mothers was 35.4 years (range 24 to 53 yrs) and of fathers 40.8 years (range 25 to 77). Of the mothers, 120 (30.2%) had completed university education as had 147 fathers (37%). A further 139 mothers (35%) and 123 fathers (31%) had completed high school. The remaining 138 mothers (27.8%) and 127 fathers (32%) had been to middle or elementary

As in Study 1, the items relating the children's present behaviours were arranged into those that the highest percentage of children with autism displayed but with the least percentage of children who were thought not to have autism. The top 13 items were then selected so as to reflect the variation among children with autism but also discriminating those with the condition from those unlikely to have it. The following criteria were applied to do this.

**•** Fewer than 50% of those children not diagnosed as autism showed the behaviour AND

**•** The percentage of autism children showing the behaviour was at least double the percent‐

The 13 items met these criteria are listed in Table 4. They are ordered by those most com‐

One previous study in Iran had identified the indicators most commonly found in a sample of 61 children (mean age 7 years) assessed clinically assessed as having autism [33]. They were: stereotyped and repetitive behaviours; lack of make-believe play, failure to initiate conversations, use of rituals, motor mannerisms, no spoken language, poor social reciprocity

The 13 items were tested for their scaling properties and the Chronbach alpha of internal re‐

A total score could be calculated for each child on these 14 items with a minimum score of 0 (all items scored as never or rarely seen) and a maximum of 14 (all items scored as ob‐ served). Table 5 presents the summary statistics for the two groups of children on this com‐

and impaired peer relations. Most of these behaviours are reflected in this study.

**•** Over 50% of children with a diagnosis of ASD showed the behaviour AND

monly seen in children with autism. The sub-grouping is also noted.

purposes of this study the latter two groups were combined.

school. In 124 families (31%) the parents were related.

*4.3.2. Study participants*

*4.3.3. Item analysis*

disabilities in the wider family circle.

age of those without autism.

liability was acceptably high at 0.866 (N=397).

#### **4.3. Study 2: Diagnosing autism**

In the second study the focus was in identifying the indictors that would distinguish chil‐ dren who were ultimately diagnosed with autism from those who were suspected of having the condition but on further examination were thought not to have autism. To do this, we accessed children's assessments on the Autism Diagnostic Interview-revised (ADI-R). Al‐ though widely used by clinicians internationally, this tool has been criticised on the length of time taken to administer and its focus on more severe forms of the condition [42]. Howev‐ er it was the tool chosen by the Iranian Special Education Organisation to assess children who screened positive for autism in the national screening program.

ADI-R takes the form of a structured interview with parents and consists of 93 items ar‐ ranged in three functional domains: Language/Communication; Reciprocal Social Interac‐ tions and Restricted, Repetitive, and Stereotyped Behaviours and Interests. Items are scored for the behaviour that the child has ever showed as well as those showed at present. It is the latter items that were included in this study.

The Persian version ADI-R [32] had been standardised on a sample of 100 children with ASD, 9 children with intellectual disability and 100 normally developing children. The sam‐ ple age range was from 4 to 14 and they were drawn from different provinces. A Chronbach alpha of 0.85 (for present behaviours) was reported. The test retest reliability on a sample of 33 children (24 with autism and 9 ID) with a 4-6 week interval was 0.99 for items relating to unusual social interaction, 0.99 for Language and Communication and 0.96 for Repetitive and Stereotyped behaviours.

#### *4.3.1. Procedure*

The ADI-R assessments were obtained for 397 children who had screened positive for au‐ tism in the national screening programme for all six-years prior to school entry (see Samadi et al.[1]). The ADI-R Persian version was administered by specialists from the Iranian Spe‐ cial Education Organisation in the form of structured interview with one or both parents supplemented by observations of the child. Also included in this sample were older children who had been admitted to schools for children with ASD, but who needed to be assessed to reconfirm the diagnosis which may have been given by a professional other than those em‐ ployed by the Iranian Special Education Organisation or by means of other diagnostic tools.

Following the diagnostic interview, 333 children (84%) were confirmed in having autism; for 20 (5%) the diagnosis was uncertain and 44 (11%) were thought not to have autism. For the purposes of this study the latter two groups were combined.

#### *4.3.2. Study participants*

*4.2.5. Conclusions*

specificity of the 16 item as a screening tool [31].

38 Recent Advances in Autism Spectrum Disorders - Volume I

latter items that were included in this study.

and Stereotyped behaviours.

*4.3.1. Procedure*

**4.3. Study 2: Diagnosing autism**

Based on the 42 items included in the GARS Scale, it was possible to identify 16 items based on parental ratings that efficiently discriminated between children with autism and those who were normally developing and those with intellectual disabilities. These items were drawn in the main from the social interaction (N=7) and stereotyped behaviour subscales (N=6) with fewer coming from the Communication domain (N=3). A further paper provides further data on the utility of GARS with an Iranian population and on the sensitivity and

In the second study the focus was in identifying the indictors that would distinguish chil‐ dren who were ultimately diagnosed with autism from those who were suspected of having the condition but on further examination were thought not to have autism. To do this, we accessed children's assessments on the Autism Diagnostic Interview-revised (ADI-R). Al‐ though widely used by clinicians internationally, this tool has been criticised on the length of time taken to administer and its focus on more severe forms of the condition [42]. Howev‐ er it was the tool chosen by the Iranian Special Education Organisation to assess children

ADI-R takes the form of a structured interview with parents and consists of 93 items ar‐ ranged in three functional domains: Language/Communication; Reciprocal Social Interac‐ tions and Restricted, Repetitive, and Stereotyped Behaviours and Interests. Items are scored for the behaviour that the child has ever showed as well as those showed at present. It is the

The Persian version ADI-R [32] had been standardised on a sample of 100 children with ASD, 9 children with intellectual disability and 100 normally developing children. The sam‐ ple age range was from 4 to 14 and they were drawn from different provinces. A Chronbach alpha of 0.85 (for present behaviours) was reported. The test retest reliability on a sample of 33 children (24 with autism and 9 ID) with a 4-6 week interval was 0.99 for items relating to unusual social interaction, 0.99 for Language and Communication and 0.96 for Repetitive

The ADI-R assessments were obtained for 397 children who had screened positive for au‐ tism in the national screening programme for all six-years prior to school entry (see Samadi et al.[1]). The ADI-R Persian version was administered by specialists from the Iranian Spe‐ cial Education Organisation in the form of structured interview with one or both parents supplemented by observations of the child. Also included in this sample were older children who had been admitted to schools for children with ASD, but who needed to be assessed to reconfirm the diagnosis which may have been given by a professional other than those em‐ ployed by the Iranian Special Education Organisation or by means of other diagnostic tools.

who screened positive for autism in the national screening program.

Of the 397 children 80% were male and 20% female. Their mean age was 7.3 years (range 5 to 14 years). In all, 32% were only children and a further 43% had one sibling with 25% hav‐ ing two to six siblings. In 23 families (5.8%), there was another child with a developmental disability although 30% of families reported having a person with mental or developmental disabilities in the wider family circle.

The mean age of mothers was 35.4 years (range 24 to 53 yrs) and of fathers 40.8 years (range 25 to 77). Of the mothers, 120 (30.2%) had completed university education as had 147 fathers (37%). A further 139 mothers (35%) and 123 fathers (31%) had completed high school. The remaining 138 mothers (27.8%) and 127 fathers (32%) had been to middle or elementary school. In 124 families (31%) the parents were related.

#### *4.3.3. Item analysis*

As in Study 1, the items relating the children's present behaviours were arranged into those that the highest percentage of children with autism displayed but with the least percentage of children who were thought not to have autism. The top 13 items were then selected so as to reflect the variation among children with autism but also discriminating those with the condition from those unlikely to have it. The following criteria were applied to do this.


The 13 items met these criteria are listed in Table 4. They are ordered by those most com‐ monly seen in children with autism. The sub-grouping is also noted.

One previous study in Iran had identified the indicators most commonly found in a sample of 61 children (mean age 7 years) assessed clinically assessed as having autism [33]. They were: stereotyped and repetitive behaviours; lack of make-believe play, failure to initiate conversations, use of rituals, motor mannerisms, no spoken language, poor social reciprocity and impaired peer relations. Most of these behaviours are reflected in this study.

The 13 items were tested for their scaling properties and the Chronbach alpha of internal re‐ liability was acceptably high at 0.866 (N=397).

A total score could be calculated for each child on these 14 items with a minimum score of 0 (all items scored as never or rarely seen) and a maximum of 14 (all items scored as ob‐ served). Table 5 presents the summary statistics for the two groups of children on this com‐ puted measure as well as for the total group. The differences on scores between the two groups was significant (F=238.0 p<0.001).

**Group N Mean Std. Deviation Median Minimum Maximum**

Indicators of Autism in Iranian Children http://dx.doi.org/10.5772/52853 41

ASD 333 8.65 2.63 10.00 .00 13.00

Not ASD and uncertain 64 2.97 2.89 2.00 .00 12.00

Total 397 8.37 3.81 9.00 .00 13.00

indicating that younger children scored more highly on these 13 items (p<0.001).

Using the summary scores it was also possible to check if these indicators varied by age of the child. The Pearson Product Moment correlation was small although significant r=-0.162

However there were no statistically significant differences by child's gender, mother's age, level of education, if the child had siblings, or if there was a another child with develop‐ mental problems in the family. This was further confirmed in a regression analysis to con‐ trol for inter-relationships among the possible predictor variables and with the children's diagnosis. It was children diagnosed with autism who had the highest Beta scores (β=5.59: 95% Confidence Interval [CI] 4.57-6.40: t=15.57 p<0.001) but the child's age was also a sig‐ nificant additional variable (β =-0.20: CI 0.03-0.37: t=2.37, p<0.05) with younger children

It was possible to identify 14 items on the ADI-R that could reasonably well discriminate be‐ tween those children who would receive a confirmed diagnosis of autism and those who did not. However these items are also more likely to be found in younger children irrespective

Finally a common set of 'best' indicators could be identified across the two studies al‐ though there was some variation in wording and overlap across the two chosen rating scales – see Table 6. Nonetheless these items reflect the three domains that typify autism although with more emphasis on social interaction and repetitive behaviours than on

However on both scales there were additional items that served to distinguish children with autism (see Table 7) and depending on the intended purpose, these items could be used to supplement those listed in Table 6 for the purposes of screening children for au‐ tism (GARS items) or clarifying the diagnosis of autism from other developmental disabil‐

**Table 5.** Mean, SDs, Median and range scores on 13 ADI-R items for the two groups

scoring more highly irrespective of their diagnosis.

**5. Comparison of indicators from study and study 2**

*4.3.4. Conclusions*

of the diagnosis.

communication.

ities (ADI-R items).


**Table 4.** The percentage of Iranian children in the two groups who were observed to show the selected behaviours from the ADI-R.


**Table 5.** Mean, SDs, Median and range scores on 13 ADI-R items for the two groups

Using the summary scores it was also possible to check if these indicators varied by age of the child. The Pearson Product Moment correlation was small although significant r=-0.162 indicating that younger children scored more highly on these 13 items (p<0.001).

However there were no statistically significant differences by child's gender, mother's age, level of education, if the child had siblings, or if there was a another child with develop‐ mental problems in the family. This was further confirmed in a regression analysis to con‐ trol for inter-relationships among the possible predictor variables and with the children's diagnosis. It was children diagnosed with autism who had the highest Beta scores (β=5.59: 95% Confidence Interval [CI] 4.57-6.40: t=15.57 p<0.001) but the child's age was also a sig‐ nificant additional variable (β =-0.20: CI 0.03-0.37: t=2.37, p<0.05) with younger children scoring more highly irrespective of their diagnosis.

#### *4.3.4. Conclusions*

puted measure as well as for the total group. The differences on scores between the two

attention; interested in infant toys such as music boxes

Social Interaction 53-2 No spontaneous sharing or no sharing. 72.7% 21.9%

responses to people except parents.

may not interfere with social activities

almost never tries to approach them.

Repetitive Behaviours 78 Complex and stereotyped bodily movements 50.8% 6.3%

**Table 4.** The percentage of Iranian children in the two groups who were observed to show the selected behaviours

things; no reciprocal smiling.

**N=333)**

80.2% 31.7%

80.2% 38.3%

78.0% 28.1%

73.4% 21.9%

71.6% 19.0%

68.7% 17.2%

67.0% 25.4%

63.6% 15.6%

62.8% 3.1%

61.9% 20.0%

58.3% 14.1%

**Non-Autism (N=64)**

**Ref num Item Autism**

Communication 42 Does not attempt or limited attempt to express interest by pointing

Communication 37 Mis-uses pronoun 'I' and refers to self by name rather than with pronoun.

Social Interaction 50 Uncertain, odd or occasional use of gaze in social interactions

Repetitive Behaviours 69 Play is linked to highly stereotypic use of objects or

and rattles,.

Social Interaction 59-2 Stereotyped, inappropriate, very limited or no

Social Interaction 51-2 Little or no smiling at people though may smile at

Social Interaction 56 Little or no coordination of eye gaze and vocalisations or weakly integrated.

Repetitive Behaviours 68 Special or circumscribed interests that can interfere with social activities

Repetitive Behaviours 77 Marked mannerisms of hands and fingers that may or

Social Interaction 62-2 Lack of interest in other children; may watch them but

Repetitive Behaviours 71 Has one to two unusual sensory interests that may

from the ADI-R.

take major amount of time.

groups was significant (F=238.0 p<0.001).

40 Recent Advances in Autism Spectrum Disorders - Volume I

It was possible to identify 14 items on the ADI-R that could reasonably well discriminate be‐ tween those children who would receive a confirmed diagnosis of autism and those who did not. However these items are also more likely to be found in younger children irrespective of the diagnosis.
