N = 5664 1.48% 5.38% 29.22% 24.26% 15.57% 6.18% 5.28% 7.55% 3.79% 1.09% 0.14% 0.02% 0.00% 5.00% 10.00% 15.00% 20.00% 25.00% 30.00% 35.00% 0 to 3 4 to 5 6 to 11 12 to 17 18 to 22 23 to 25 26 to 30 31 to 40 41 to 50 51 to 60 61 to 70 71 to 80
What are the most common co-morbidities of those diagnosed with an ASD? The majority of individuals in the CARE database had at least one other co-morbid condition listed in the DSM III or DSM IV. Mental retardation is the most commonly listed co-morbidity in the CARE database.
Summary of Prevalence Data from Existing Databases
These data present a picture of the prevalence of ASDs in certain public service system databases for a defined period of time. In interpreting this information, it is important to remember that the accuracy is limited by the reliability of the data reported. Since none of these systems were set up to be an ASD tracking system, the numbers should be interpreted cautiously. The number of persons in these systems with an ASD probably represents an underestimation of ASDs because many individuals, particularly adults, who manifest characteristics consistent with an ASD, have yet to receive a diagnosis of an ASD through an assessment conducted by qualified professionals. Given the historical changes in diagnosis of ASDs, some older individuals may be listed in the CARE system under a
different diagnostic label, but, if in fact they were assessed now, would be considered to have an ASD. Others who may be eligible for services have yet to be screened. Diagnostic
categorization in these systems may also be influenced by eligibility requirements, and differences in application of diagnostic labels may exist even within the same system. For example, some of those interviewed about the diagnosis process suggested that some school districts may categorize a child with symptoms of Asperger’s Disorder under the Autism label in the PEIMS System, while other districts might consider the same symptoms as manifestations of behavior problems and label the child as Emotionally Disturbed in the PEIMS System. In addition, the ECI system tends to delay labeling a child with an ASD because it is so difficult to make an accurate diagnosis with a young child. Instead, ECI staff are more likely to categorize the child as having a pervasive developmental disorder, provide needed services, and monitor his or her development. The philosophical reluctance, fed by the concern for meeting the unique strengths and needs of the child and family rather than determining diagnostic labels, in addition to the practical difficulty of diagnosing young children with autism, is reflected in the fact that only 67 children out of 43,035 children in the ECI database receiving comprehensive services carry the autism label. This corresponds to 1.6 per 10,000 children.
The information from the CARE, PEIMS, and ECI systems represent different “snapshots- in-time” of ASD prevalence as recorded in these three systems as of the summer 2005, when these data were requested. However, the fact that much of what we
examining PEIMS data from earlier years strengthens the conclusions that can be drawn. Because there is no single point of entry for the diagnosis of ASD or the delivery of services to individuals with an ASD, the same individual could appear in more than one of these databases. These data systems are not linked and are not set up in a way to share information easily. Many individuals with an ASD may not be represented in any of these prevalence reports because they don’t receive services, they may not have gone through the qualification process, or they may receive privately funded services. Given the historical changes in diagnosis of ASDs, some older individuals may be listed in the CARE system under a different diagnostic label, but, if in fact they were assessed now, would be considered to have an ASD. Others who may be eligible for services have yet to be screened.
Keeping in mind these data limitations, the following observations are made with caution.
• Thousands of Texans have been diagnosed with an ASD and are therefore may be eligible for services.The Centers for Disease Control and Prevention state that “data from several studies found prevalence rates for ASDs between 2 and 6 per 1,000 individuals. Therefore, it can be summarized that between the 1 in 500 (2/1,000) to 1 in 166 children (6/1,000) have an ASD”
(www.cdc.gov/ncbddd/autism/asd_common.htm). Consequently, the rate of ASDs among children in the PEIMS system (3.5 per 1,000 students) is comparable to national statistics in many parts of the state.
• The number of individuals with an ASD varies across the state. Individuals with an ASD are most likely to be living in large metropolitan and suburban areas. It is not know whether this is where there is easier access to clinicians more likely to make an ASD diagnosis, or where school districts have the educational resources to qualify students for the AU label. Obviously, differences in population across the state account for some of these differences, but even taking census into account, the rate of ASD still varies considerably.
• These findings are consistent with Palmer’s analysis (2005), which found that the higher the school district revenue, the lower the percentage of disadvantaged
students; and the higher the number of students in the district, the higher the rate of reported autism.
While it is difficult to compare data across the three systems reported here, some common trends emerge. For example, no child in the Midland Odessa HHS region is diagnosed with autism in the ECI database. The Permian Basin Community Centers (also serving the Midland Odessa area) has only 34 clients in the CARE database with an ASD diagnosis, and the ESC for the Midland area has the lowest rate of autism in the PEIMS system. There are no children diagnosed with autism in the ECI database from HHS4 (East Texas) and HHS11 (Rio Grande Valley). Both of these areas have community centers with fewer than 50 clients diagnosed with autism in the CARE system. The ESCs serving
Amarillo and Mt. Pleasant have among the lowest numbers of autism in the PEIMS system; community centers in these areas also reported less than 50 clients with an ASD in the CARE system. We agree with Palmer’s conclusion (2005) that there may be a certain threshold in terms of absolute numbers of students diagnosed with autism that a district must have before it can begin to deal effectively with children with autism. Once the district (or the community center) begins to “see” this number of individuals, autism becomes “salient.” Providers become better trained to recognize autism when it is indeed present and to provide needed services.
As suggested from the interview findings, Texas appears to have “pockets of
excellence” where quality diagnostic and referral services are available, but many parts of the state need additional support to meet the need.
• These data suggest that children between the ages of 6 and 17 are most likely to be diagnosed with an ASD. However, historical changes that have occurred in diagnosis may contribute to underestimates of the prevalence of ASD in older individuals. Unfortunately for individuals who have “aged out” of the educational system, service options are limited. According to CARE system records, 565 of the 1506 individuals over age 22 with an ASD diagnosis are on an interest for services.
• While 22% of those over age 22 receiving services are served in the Home and Community Based Services Program, 23% are receiving services in a state operated mental health facility or state operated mental retardation facility. When a child is diagnosed with autism, some providers, recognizing the long wait for services in
services in the state’s MR system. But many families do not receive this
encouragement; so many children may not even get on an interest list in a timely way.
• Across all data sets, boys with an ASD greatly outnumber girls. This disparity is consistent with national data. “The overall ratio of males to females with autism has traditionally been reported at approximately 3:1 to 4:1 (Lotter, 1966; Wing & Gould, 1979). However, the ratio seems to vary with IQ, ranging from 2:1 with severe dysfunction to more than 4:1 in those with average IQ (Bryson, 1997; Ehlers & Gillberg, 1993; Wing & Gould, 1979).”
• In the PEIMS and ECI data systems, the majority of children diagnosed with an ASD are not economically disadvantaged. When compared with the 2004 Census estimate of the racial/ethnic breakdown for Texas, the reported prevalence of ASD in the CARE database appears to be somewhat higher among Whites and African- Americans and lower among Hispanic/Indian individuals. However, the
racial/ethnic disparities may be confounded with differences in reporting rates across the state. Our interview findings suggest that cultural, language, and/or economic factors all contribute to reducing the likelihood that Hispanic children with autism will be identified and referred for services. Their parents may find it more difficult to communicate with providers about symptoms that would trigger a referral and, if a referral is received, access needed referrals for diagnosis and treatment. Special efforts will be needed to meet their screening and referral needs. As Palmer and his colleagues (2005) have suggested, it is not that low income minority children do not have ASD, but that they get labeled differently, perhaps with mental retardation or attention deficit disorder.
• Many individuals with ASD also have other co-morbidities, most commonly speech impairment and mental retardation, although the categorization of co-morbidities
1 Filipek, P.A., Accardo, P.J., Baranek, G.T., Cook Jr., E.H., Dawson, G., Gordon, B., Gravel, J.S.,
Johnson C.P., Kallen, R.J., Levy, S.E., Minshew, N.J., Prizant, B.M., Rapin, I., Rogers, S.J., Stone, W.L., Teplin, S., Tuchman, R.F., & Volkmar, F.R. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders, 29 (6), 439-484.
varies across data sets depending upon how these conditions are coded. The range of co-morbidities underscores the difficulty in diagnosing and treating ASD.
Findings of Professional Interviews
Over 60 professionals who diagnose ASDs or are very familiar with the diagnostic process across the state were contacted to determine interest in and appropriateness for inclusion in the study, and 33 telephone interviews were conducted. These interviews were conducted to gain an understanding of their experiences with the process of diagnosing autism in Texas. These individuals were located through publicly available Web sites, state agency contacts, and TCDS staff contacts. Following approval from The University of Texas at Austin Institutional Review Board, a body that ensures protection of the rights of those participating in research, individuals were contacted by phone to see if they were willing to be interviewed. As the interviews contained questions that these individuals might routinely answer in their work, informed consent was not required. Interviews were not tape recorded and the privacy of participants was assured. While interviews of physicians and other health care providers were a challenge to obtain, ultimately two developmental pediatricians and one doctoral-level pediatric nurse practitioner were interviewed.
Individuals were asked to identify their roles within their agencies. The table below shows the education levels, licenses, and/or disciplines of the participants. Eleven
participants held doctoral degrees in their fields. In addition, a total of eight participants were licensed specialists in school psychology (LSSP), the highest number of any discipline identified.
Table 5. Interviewee Data
Title Masters degree Doctoral degree
Licensed Psychologist 3
Licensed Psychological Associate 4
Licensed Specialist in School Psychology 4 4 Educational Diagnostician 3
Special Education Administrator 1 1
Developmental Pediatrician 2
Nurse 1
Behavior Consultant/Specialist 2 Unknown degree level
Other (autism specialists, university faculty,
ECI program director) 4 Unknown degree level
Participants live in communities across the state: Amarillo, Austin, Dallas, Del Valle, Deerpark, Houston, Edinburg, Fort Worth, Whitney, San Antonio, Seguin, Marshall,
Mission, El Paso, College Station, Temple/Belton, and Waco. The majority of the participants are working in the educational system.
Researchers used a structured interview format and asked participants questions about their experiences with diagnosis, service design, development, and implementation for people with ASDs. Information was gathered to answer three questions: 1) who makes the diagnosis of autism in Texas; 2) what credentials are required of qualified diagnosticians in Texas to diagnose ASDs, (i.e., school diagnosticians, school psychologists,
clinical/developmental psychologists, developmental pediatricians); and 3) what criteria is used to make ASD diagnoses. In addition to these basic research questions, additional critical information that enhances the research-based understanding of diagnosis and services for ASD was also gathered through the interviews.
This group of participants was very experienced with individuals diagnosed with an ASD. The number of children seen on a daily basis by those interviewed in the study ranged from an average of one child with an ASD per day seen for behavioral difficulties by a school psychologist to approximately three children with an ASD seen per day by a behavioral consultant. Most participants report an increase in the number of individuals diagnosed with an ASD over the last few years.
In Texas, ASDs are diagnosed primarily by professionals with the credentials represented by the participants of this study, with the exception of behavior consultants, speech language pathologists, and social workers. However, TAC rules governing eligibility criteria for special education and related services allow the local ARD committee to identify
the appropriately certified or licensed practitioner with experience and training in the area of the disability to determine eligibility for services.
Twelve of the participants use the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition (DSM-IV) as at least part of the diagnostic process. While TAC Rules governing diagnostic eligibility for services and supports for PDD require the use of criteria from the current edition of the DSM, there is no such requirement for diagnostic eligibility for special education and related services or for ECI services. Thus, not all participants in this study used the DSM for diagnosis. Seven participants identified other diagnostic assessments, including the Vineland, the Psycho-educational Profile – Revised (PEP-R), Gilliam Autism Rating Scale (GARS), Gilliam Asperger Disorder Scale (GADS), Childhood Autism Rating Scale (CARS), and the Autism Diagnostic Observation Schedule – Generic (ADOS-R). In addition, nine of the respondents discussed using some form of an assessment team, gathering information from home and school through interviews, and observation of the child often in different environments. Play-based assessment is used in at least one school district. Two participants said that they conduct interviews with teachers. Two diagnosticians reported that the assessment process is videotaped, and one school district sends the videotapes to an expert for review.
Determination of the diagnostic label was discussed by several participants. A speech language pathologist, who is part of an interdisciplinary team working exclusively with the early childhood population, stated that if the child is being evaluated by the team before being evaluated by a neurologist or developmental pediatrician, the team uses developmental delay as the diagnosis. If a physician has already seen the child, they can diagnose with an ASD. One participant indicated that the diagnostic category was often determined based on the availability of services, stating if mental retardation and ASD co-exist, the mental retardation diagnosis was usually identified as the primary diagnosis, and an ASD diagnosis secondary.
All participants indicated that individuals with an ASD typically had an additional diagnosis. These diagnoses most often included mental retardation; Attention Deficit Hyperactivity Disorder (ADHD); Bipolar Disorder; Major Depressive Disorder; Anxiety Disorder; Obsessive-Compulsive Disorder; and Oppositional Defiant Disorder reported at high rates from 50 % to “nearly all.” A licensed psychologist stated that the secondary
diagnosis. Four participants reported emotional disturbance as a common secondary
diagnosis, especially with those individuals described as “high functioning.” Other secondary diagnoses identified less frequently by participants included Golden Harf syndrome, Down syndrome, and sensory integration disorders. Only four participants identified disorders of speech, language, and communication as secondary diagnoses; however, these participants stated that speech and language disorders were observed in all individuals diagnosed with an ASD. One participant stated that children with an ASD who had higher communication skills tended to have fewer behavior problems.
The trigger most often cited for a referral to assess for an ASD is behavior, followed by issues with language and communication. Several of the participants stated that they preferred to receive a referral before a child reaches the age of three so that they can transition into Preschool Programs for Children with Disabilities (PPCD). Six participants stated that they often get referrals from ECI for an ASD assessment. One educational diagnostician stated that it is the parent, usually the mother, who is the first to raise concerns about her child’s development, but that often professionals are reluctant to listen to parents. According to this participant, educated parents with other older children know by the time the child is two to two and a half years old that he or she is not developing normally.
Participants did not identify diagnostic services for children suspected of having an ASD as more difficult to get than other diagnostic services, although a participant who provides technical assistance in central Texas stated that there are problems with quality of diagnostic services because of a lack of expertise. Treatment services, however, were identified as being harder to get by about one-third of the participants, one of whom
identified issues with insurance as the reason for limited services. One respondent stated that because ASDs are mental health diagnoses, services are not always covered by insurance. At times, the diagnosis may be changed to encephalopathy so that it would be covered by insurance.
One school psychologist stated that it wasn’t harder to get needed services within the school because for students with Autism or PDD, 19 TAC Section 89.1055(e) requires the consideration of seven specific supports to be included in the student’s individual education plan (IEP). These supports are: (1) extended educational programming; (2) daily schedules
reflecting minimal unstructured time; (3) in-home training or viable alternatives; (4)
prioritized behavioral objectives; (5) prevocational and vocational needs of students 12 years of age or older; (6) parent training; and (7) suitable staff-to-students ratio. However, it’s harder to get the right type of service. Funding for services, especially for children from birth to age eight, for applied behavior analysis (ABA) was identified as an issue of concern. Treatment for behavior in general is a service lacking in most areas. A licensed psychologist at a mental heath and mental retardation authority (MHMRA) stated that the schools provide behavior intervention services are not as comprehensive or effective as those provided by the MHMRA. Individuals must qualify for the MHMRA services, however, so they may not be available to all who need them.