Autism and Special Education Policy in Mexico

Autism and Special Education Policy in Mexico

John P. Tuman, Danielle Roth-Johnson, Dana Lee Baker, and Jennifer Vecchio


In recent years, a great deal of scholarship has examined the adequacy of
special education and other support services for children with disabilities in the
U.S. and in other industrialized states. By contrast, there has been
comparatively little study of services for children with disabilities in developing
countries. In this paper, we attempt to bridge this gap in the literature.
Focusing on the case of Mexico, we examine the provision of special education
and other support services, and the availability and cost of private services.
The focus of the analysis is on children with autism. Drawing upon a
theoretical approach that combines modern political economy and comparative
institutionalism, we also develop a tentative explanation of the politics of policy-
making among parents and other stakeholders in the autism advocacy
community.


INTRODUCTION

Since the early 1980s, governments in Latin America have implemented a wide
range of social and health policy reforms. In the aftermath of the 1982 debt
crisis, policy-makers in the region came under strong pressures from the
International Monetary Fund and the World Bank to reduce social spending and
to redesign social and health programs to be compatible with neoliberal
economic reforms.1 In addition to pressures emanating from international
economic organizations, transnational policy networks and politically insulated
“change teams” were also key to promoting social sector reforms.2 Regardless of
whether the origins of policy change were located at the systemic or domestic
levels, by the mid-1990s it was plain to most observers that social policies had
been radically altered throughout Latin America.
Social sector reforms in Latin America have had a profound influence on
education policies in the region. A rich policy literature has documented effects
of various reforms to regular education, ranging from decentralization plans,
performance-based compensation for teachers, and vouchers.3 Yet, although the
effects of reforms to regular education have been well studied, analysts have
devoted comparatively little attention to recent changes in special education
policy in Latin America.4 The lack of attention given to special education by
analysts of comparative health and social policy is potentially significant. Human
rights groups and policy-makers alike have come to recognize that people with
disabilities in Latin America are subject to social exclusion and frequently end up
living in poverty.5 In this context, the question of disability6 rights has become
increasingly salient in selected countries in Latin America. There is also a strong
presumption among regional health organizations that public policies for people
with disabilities are not adequate. Indeed, in many cases, special education is the
only major service provided by the state, and particularly for people with mental

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and neurological differences. Viewed from this angle, the failure to adequately
study changes in special education creates a large gap in our understanding of
how Latin America’s new democracies are addressing the needs of differently-
abled people.

In this paper, we attempt to bridge this gap in the literature by focusing on
the provision of public education policies in Mexico. Among the Latin American
countries implementing changes in special education policy, Mexico’s experience
with reform has been particularly striking. After 1993, the government embraced
a policy of inclusiveness and mainstreaming, to the maximum extent possible, for
all children with disabilities. To date, however, only a small number of studies
have examined the effects of Mexico’s reforms.7 There has been virtually no
research on the experience of specific groups of disabled students in Mexico
covered by special education, including students with autism.8 A focus on
children with autism can contribute to the comparative analysis of special
education policies specifically and social sector reform in Latin America more
generally. Given the high level of economic integration between the U.S. and
Mexico, it is possible that the recent surge in media coverage of growth in autism
in the U.S. has spilled over into the Mexican media market. If awareness of
autism in Mexico is increasing, then it is possible that parents and advocates are
scrutinizing the provision of special education policies, with attendant
consequences for political organizing in the disability rights community.9

A focus on policy for children with autism can also contribute to a broader
analysis of democratization in Latin America. Although there is some debate in
the literature, recent scholarship has asserted that full democracies must provide
a minimum of protections and opportunities for groups that are vulnerable to
social exclusion.10 Because people with autism experience varying levels of
behavior that is socially defined as “stereotyped,” “impaired, or “socially
challenged,” they are at risk for experiencing poverty, social exclusion, and
mistreatment via institutionalization.11 The inability or unwillingness of policy-
makers to provide adequate opportunities for people with autism and others with
disabilities is suggestive of the barriers political regimes face as they attempt to
transition from semi-democracies to full-democracies.

The analysis employs a case study12 approach that utilizes different types
of data. We draw partly on anonymous semi-structured interviews to analyze the
effects of reform and the pattern of political activism among disability rights
groups. Generated between 1999-2001 and 2006-2007,13 the interviews cover
federal and state-level special education officials, psychologists and other
professionals (e.g., speech therapists, behavioral intervention consultants),
members of advocacy organizations, and other stakeholders in Mexico and the
U.S. who work in Mexico’s disability policy area. The information gleaned from
interviews is augmented by contact with staff from U.S. autism clinics (who have
worked in Mexico) and with analysis of quantitative data on services for children
with autism provided by federal special education authorities.14 Although special
education policies were reformed in the mid-1990s, we restricted the time frame
for analysis to 1999 through 2006 in order to allow sufficient lag for the effects of
reform policies to have an effect.
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The paper is divided into four sections. In the first section, we examine
the data on the prevalence of autism in industrialized countries and in Mexico.
The second and third parts examine public special education and private
programs for children with autism. Finally, in the fourth section, we examine the
politics of policymaking, with a focus on the activities of disability rights and
advocacy organizations.

AUTISM IN MEXICO: AN OVERVIEW

Data from recent studies suggest that prevalence of autism in industrialized
countries may be higher than what had been estimated in previous research. In a
review of 16 studies from 1993 to 2003 completed in the U.S., U.K. France,
Sweden, Norway, Finland, and Japan, Eric Frombonne found that the median
estimate of prevalence of autism and autism spectrum disorders from these
studies was 1.3 per 1,000 children.15 In 2006, the Centers for Disease Control
and Prevention (CDC) reported its first national estimate of ASD prevalence
among children in the U.S. The CDC study, which did not distinguish among
parent-reported diagnoses of childhood autism, ASD, or ‘atypical’ autism,16
suggested that the prevalence rate among children in the U.S. is between 5.5 and
5.7 per 1,000 children (or approximately one in 175, to one in 181 children).17
Studies of administrative prevalence in selected U.S. states (as measured by
normalized prevalence of students receiving special education services) suggest a
ten-fold increase from 1995 through 2004 in some areas.18 The reported increase
in prevalence has been subject to debate; factors implicated in the trend include
changes in diagnostic criteria, better surveillance, environmental exposure,
genetic and environmental interaction, perinatal risk factors (e.g., pre-term
delivery, etc.), parental age, and diagnostic substitution.19

In Mexico, epidemiological estimates of autism prevalence at the national
or state level do not exist. Clinical studies and medical reports in Mexico tend to
report prevalence rates that are based upon samples from the U.S. and U.K.20 The
only Mexican data available on autism prevalence refer to reports from surveys of
families, as measured through a registry of minors with disabilities that was first
completed in 1996.21 Morales22 notes that this survey, the Registro de Niños con
Discapacidad, was national in its scope and yielded a total childhood disability
rate consistent with estimated rates from other developing countries. According
to the survey, the total number of children in Mexico identified with autism in
1996 was 45,956. We combined the registry data with Mexican census data for
1996 for the relevant age group in order to calculate (provisionally) a childhood
autism rate (ages 0-15) in Mexico of approximately 1.43 per 1,000.23 Because the
registry data represent an undercount of the true prevalence of disability in the
population, this estimate should be treated as provisional and with caution.
Moreover, while members of advocacy organizations suggest that autism has
increased in Mexico, we lack any longitudinal data on the growth trajectory of
autism since the 1990s.
Social acceptance of people with disabilities, including people with autism,
varies throughout Mexico.24 Although the government has attempted to find
employment for adults with disabilities, many face discrimination in the labor
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market (where unemployment is already a problem) and other forms of social
exclusion. Given the social stigma associated with disability, the incidence of
autism among children within the family can magnify many other challenges
Mexican families may encounter. The problems faced by families who care for
children with autism in Mexico tend to be, to a large extent, similar to issues
mentioned in studies from the U.S. and other industrialized countries.25
Due to the persistence of folk beliefs26 and misinformation about the
sources of disability, families with children with autism report isolation or
distance from other members of their extended family, changed behaviors among
siblings, and feelings ranging from depression to burnout.27 Economic resources
are frequently cited cause of familial stress, as parents attempt to secure the
necessary funds to find appropriate support services or treatment28 for their
child.29 Mothers of children with autism in Mexico report being most affected by
the child’s disability, since they are seen to be the primary caregivers and are
expected to provide extra care and support; in some cases, women are compelled
to quit their jobs in order to provide additional care (exacerbating economic
stress in the family unit). Fathers may spend less time at home after the
diagnosis or abandon the family, leaving the mother to assume most of the
responsibilities associated with the child with autism and his or her siblings. 30
The expectation that women should assume the primary care-giving role for a
child with disability would appear to be associated with a the manner in which
gender roles are constructed in the Mexican household; it also reflects gendered
attitudes toward disability which emphasize that mental disabilities among
children are the fault of the something the mother has done.31

SPECIAL EDUCATION SERVICES FOR CHILDREN WITH AUTISM AND OTHER
DISABILITIES

Having discussed the estimated prevalence of autism in Mexico and the situation
facing families with autistic children, we turn now to an analysis of special
education services, the mainstay of the state’s service delivery model for children
with disabilities.
The decade of the 1990s saw important changes in Mexico’s educational
system. After securing the consent of the leadership of some opposition parties
and the national teachers’ union (Sindicato Nacional de Trabajadores de
Educación, SNTE), the Salinas administration (1988-94) engineered a major
reform of the education system in 1992. Under the new policy, which involved a
significant degree of devolution, educational administrators at the state level
were given more flexibility to meet the constitutional requirement of providing
children with a basic education through the eighth grade. Subsequent reforms
modified policies with regard to the provision of special education services.
Pursuant to 1993 amendments to the Mexican Constitution (Article 3), the
Mexican Congress approved a new education law that specifically recognized that
children with disabilities have the right to receive public education through the
eighth grade.32
In principle, the new federal special education policies adopted in 1993
were extremely progressive. To the maximum extent possible, school
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administrators and teachers were required to educate children with disabilities in
the regular classroom environment. The law established a goal of inclusion but
also provided for the possibility of partial or total placement in specialized
settings for children with severe disabilities. New mandates also required state
governments to train regular classroom teachers in the new model for special
education and to provide greater resources to families with disabled children.
The process of identifying a child with disabilities, including children with
autism, changed with the new policies. Under new criteria implemented after
1995, a child who demonstrates difficulty in acquiring the curriculum for her
grade may be identified as at risk and deemed eligible for special education
services.33 The reference point for performance is the student’s peer group.34
Subsequently, in the process of reevaluating curricular goals and teaching
methods for a student identified as at risk, a multidisciplinary team may analyze
the nature of the student’s disability (if any) and her present levels of
performance based upon “curricular assessments,” observation, and interviews
with teaching staff and caregivers.35 In a small government study of children
with autism receiving special education in Mexico City, children classified as
“autistic” exhibited many symptoms that were consistent with the Diagnostic and
Statistic Manual (DSM) IV criteria for autism spectrum disorder.36 It is worth
emphasizing, however, that staff persons who conduct initial diagnoses are not
required (and frequently do not employ) diagnostic test instruments37 to
determine whether a child falls on the autism spectrum or to certify eligibility for
special education services.38
Since the mid 1990s, children with disabilities including autism have been
offered public special education services primarily through two programs, Units
of Support Services for Regular Education (Unidades de Servicios de Apoyo a la
Educación Regular, USAER) and Centers of Multiple Attention (Centros de
Atención Multiple, CAM). Both programs were the product of educational
reforms discussed previously (see Table 1).

Table 1: Changes in Early Intervention and Special Education Services, Mexico,
1985-2005

Year
Special
Centers
Centers
Psycho-
Units of
Centers for
Diagnostic Units of Support
Education
for
for
pedagogical Integrated
Early
Centers
Services for
Schools
Multiple
Training
Centers
Groups
Intervention
Regular
Attention
Education
1985
476
---
67
279
543
13
---
---
1990
656
---
86
485
576
35
40
---
1995
824
---
90
580
334
55
30
376
1996
919
---
73
343
264
41
9
815
1997
169
910
71
136
136
28
10
1382
1998
135
1031
57
69
54
19
17
1648
1999
103
1144
40
40
37
11
---
1922
2000
100
1197
37
27
17
8
---
2180
2001
85
1253
36
27
16
7
---
2298
2002
81
1278
33
18
16
6
---
2527
2003
70
1296
32
15
16
4
---
2768
2004
70
1321
31
14
16
4
---
2751
2005a
72
1352
32
14
16
4
---

Note: A dash (--) indicates no data because observation is prior to creation of new program in 1995, or because observation is
after program was eliminated by reforms in 1995.
a Preliminary figures for the year.
Source: Instituto Nacional de Estadística, Geografia y Informática (INEGI), Anuario Estadística de los Estados Unidos
Mexicanos ed. 2005 (Aguascalientes, México: INEGI), 2005, Table 4.37.
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USAERs serve children whose disabilities are not so severe as to prevent
placement in a regular classroom environment. Although there is some variation
in the administrative structure of USAERs across different states,39 in general,
each unit tends to be composed of a multidisciplinary team that includes several
special education teachers, a social worker, a psychologist, and a speech
therapist.40 Each USAER team is responsible for completing an initial evaluation
of a student, for implementing changes in curricular goals and instructional
methods with teachers, and for working in individualized sessions with students
(inside the classroom, or in more contained environment at the school). USAERs
also provide training for parents and coordinate supplemental health services as
needed for children.41 Under current guidelines, each USAER is designed to
provide up to 30 on-site visits annually to five schools with an average caseload of
20 students.42 During the 2005-2006 school year, government data indicate that
USAERs provided special education services to 328 children with autism in
Mexico (Table 2).

Table 2: Number of Children with Autism Served in USAER and CAMs, 2005-06
School Year

USAER
CAM


CAPEP
Total



328
914
353
1,595

Source: Secretaria de Educación Pública, Orientaciones generales para el funcionamiento de los
servicios de educación especial (Mexico, D.F.: SEP, 2006), 25.


By contrast, “basic” CAMs43 are designed to provide special education to
children with severe forms of autism or other disabling conditions that create
barriers to learning in a regular classroom environment. Typically, a student is
placed in a CAM only after a USAER team has recommended such a placement
and the parents have given their consent.44 As in regular schools served by
USAERs, basic CAMs make appropriate modifications with the goal of helping
students with disabilities acquire the core curriculum. Students with differing
disabilities are grouped together based upon their present levels of performance;
class size in each CAM varies but may range from 10 to 20 students.45 Students
in CAMs may also receive supplemental support services from other programs,
including speech therapy, behavior management, etc.46 The Ministry of
Education reported that CAMs served a total of 914 children with autism
throughout Mexico in the 2005-2006 school year (Table 2).47
As in other countries, the special education programs established to serve
children with autism in Mexico face a number of challenges in the area of
coverage and performance. First, due to the strong commitment to “neoliberal”
economic policies across the last three presidential administrations in Mexico,
government spending for special education has not been adequate.48 As a result,
there is a serious coverage gap between the potential demand for special
education services and its provision. A rough estimate of the coverage gap for
children with autism, which we calculated with the 1996 registry data of children
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with autism and more recent data on children with autism enrolled in special
education programs (USAER, CAM, and other programs,) suggests that only 3.5
percent of Mexican children with autism were receiving special education
services in 2005.49 Studies of families who have children with autism echo these
findings. For example, Araujo Campbell and Figuera Duarte found that families
in search of the appropriate services for their child with autism had a very
difficult time finding qualified medical, psychological and educational personnel.
With respect to special education services in particular, parents mentioned the
absence of adequate facilities and revealed that their children were frequently
transferred from one special education institute to another. In some cases, the
school failed to identify the disability or even withheld the diagnosis of autism
from the parents so they wouldn’t reject the child.50
The coverage gap for children with autism is also reflected in spatial terms
and mediated by ethnicity and poverty. According to government data, USAERs,
CAMs and other special education support services were available in only 42
percent of municipalities, with a clear bias toward wealthier cities with larger
population in Mexico;51 more recent data from 2006 showed virtually no change
in this figure.52 Children with autism and other disabilities who are indigenous
or who live in poor, rural areas are therefore at significant risk of not having
access to any public special education services.53 In light of this, it was not
surprising that a psychologist in a rural area of Tampico noted that publicly
provided resources for special education create and sustain “little infrastructure,
administrative and physical”54 for special education.

The lack of sufficient resources has also led to staff shortages and
inadequate training, with the effects of diminishing the efficacy of special
education for all students with disabilities, including those with autism. In its
national evaluation of USAERs completed in 2002, the Ministry of Education
noted that USAER teams tend to serve more schools and students than provided
for in the program’s design (20 students, five schools). Instead of conducting 30
on-site visits to five schools during the year, as contemplated in the policy, many
USAER teams serve more than five schools and are able to provide only 10 visits
or less annually, with attendant consequences for the quality and intensity of
services.55 Fletcher et al.’s (2003) study of USAERs in Mexico City and
Guanajuato -- which covered some schools that enroll students with autism –
reached similar conclusions. They found that due to staffing shortages, some
schools received no services from USAERs; in other cases, even when USAER
teams were able to provide services, there was a lack of coordination with regular
teachers and inadequate training of regular teaching staff on the new model.56
Respondents covered by our study also emphasized the lack of adequate training.
For example, a school staff member in Coahuila explained “there are national
congresses [for training] in Mexico City, but we haven't been able to send
teachers because we don't have a lot of money.”57 Likewise, a national survey of
USAER teams completed in 2006 by the Red Internacional de Investigadores y
Participantes sobre Integración Educativa found that 72 percent of team
members felt that that the Ministry of Education was not providing sufficient
training and services to facilitate inclusiveness, while 65 percent stated that
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students lack sufficient school supplies, and 73 percent stated that infrastructure
guaranteeing physical access is insufficient.58
Resource constraints and staff shortages have also hampered CAMS, the
other mainstay of special education in the new model of service delivery. The Fox
administration was forced to admit in 2006 that the situation had changed little
since 2002: There is a serious teacher shortage for CAMs and little growth in the
number of teachers’ colleges offering training for people who wish to enter special
education teaching CAMs.59 In addition, the fragmentary evidence suggests that
the staff-to-student ratios in some CAMs are higher than what has been
suggested in the rigorous, peer-reviewed literature on efficacy for educating
children with autism.60

Finally, there is little systematic information regarding the efficacy of
teaching methods and strategies used by USAERs and CAMs for children with
autism. A small number of research units at several universities in the U.S. and
elsewhere have developed comprehensive programs that have been shown (in
highly selective, peer-reviewed publications) to help children with autism make
gains in the domains of speech, social interaction, and cognitive skills.61
Nevertheless, based upon contacts of staff in these centers, we found that none
had provided professional training to educational staff at the federal level or in
local public schools in Mexico in recent years.62 Furthermore, it remains unclear
how much the published work of these research units has become integrated into
special education services for children with autism. In Mexico City, for example,
the most recent training program for children with autism and adolescents
conducted by the Dirección de Educación Especial employed a neo-Freudian,
psychoanalytic model derived from the French psychologist Lacan.63
Significantly, the approach rejects direct, one-on-one instruction with students
with autism (while retaining, at least, an emphasis on a structured environment);
the Lacanian method is not been among the group of methods shown to have
efficacy in the peer-reviewed scientific literature.64

PRIVATE SERVICES

A number of private schools, clinics, and associations in Mexico also offer
children with autism special education and a range of other treatments and
services, ranging from interventions grounded in applied behavioral analysis, to
those that focus on speech, nutrition, or Lacanian65 therapy. Relatively state-of-
the art, some schools are created and operated by parents. As one professional
consultant noted:

Most parents in Mexico form non-profit associations. Some associations build
and run schools for their own children. I train parents and teachers of schools
controlled by parents. I want the technology to go to those that can use it every
second of the child’s waking life. I normally do not teach psychologists or
therapists. In Mexico it is still a very clinical model and the therapies provide
behind-the-door therapy that the parents never see.66

As the data in Table 3 suggest, organizations providing private services
tend to be concentrated in states that have a higher degree of wealth, as measured
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by real gross state product (GSP) per capita. As in the case of public special
education, then, private services are biased toward wealthier areas of Mexico.
Indeed, real GSP per capita has a statistically significant effect (p<.001) on the
level of private clinics in each state.67

Table 3: Number of Clinics and Associations Offering Special Education,
Intervention Service and Training for Children with Autism, by State (2006)

State
Cities with Private
# Clinics and Associations
Services
per State
Aguascalientes
Aquascalientes
1
Baja California
Tijuana
1
Chihuahua
Juarez (2)
3
Chihuahua
Federal District
Mexico City (16)
16

Jalisco
Guadalajara (2)
2
Morelos
Puebla
1
Nuevo León
Garza Garcia
2
Montérrey
Sinaloa
Culiacan (2)
3
Mazatlan

Sonora
Hermosillo
1
State of Mexico
Tultepec
6
Metepec
Cuautitlán Izcalli
Toluca
Naucalpan
Polanco
Tamulipas
Victoria
2
Tampico
Yucatan
Merida (2)
2
Total

40

Source: Unpublished lists compiled by Dirección de Educación Especial, Mexico City.

Systematic data on the cost of private services are not available, but the
costs of psychological services for children with disabilities of US$ 8 to 10 per
hour reported in Baker68 and other sources is far above the earnings of those
receiving minimum wages and twice as much as average hourly wages in 2004
received by unionized automobile workers, among the highest paid workers in
Mexico’s industrial sector.69 If we assume conservatively that private
psychological services were offered to children for two hours per week, this would
come to approximately 13 percent of the average monthly gross pay received by
unionized automobile workers.70 Factoring in the start up costs of home and
private service, including initial evaluation and an average of 24 hours of staff
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training provided by consultants, the costs for private home services are probably
much higher. In light of this, it is hardly surprising that Araujo Campbell and
Figuera Duarte 71 found that some parents of children with autism report selling
their assets (e.g., automobiles, real estate, furniture) to pay for private services.
Some child psychiatrists report providing services for free to children with
autism, but this would appear to be a limited practice.72 Government funding to
cover tuition is available for only one clinic located in Mexico City.

The efficacy of treatments offered by private service providers may also
vary. Employing methods shown to have efficacy, the Lovaas Institute, a U.S.-
based research institute, has provided training to staff in a private program in
Mexico. Some other Mexican programs offer private school and home-based
programs using methods that have been shown in rigorous peer reviewed studies
to have efficacy in producing gains in speech, social interaction, and cognitive
skills. This includes most of the intensive methods using applied behavior
analysis.73 Nevertheless, it remains unclear that the methods for behavioral
interventions developed in clinical studies are being implemented in private
programs in Mexico. In addition, there are a number of other methods used in
private programs – including many nutrition therapies – that generally have not
been shown to have efficacy in the peer-reviewed, scientific literature.74

THE POLITICS OF POLICY FOR CHILDREN WITH AUTISM IN MEXICO: A
TENTATIVE EXPLANATION

To summarize the findings thus far, education policy for children with autism in
Mexico remains extremely fragmented and is of variable quality. Public special
education policy is characterized by inadequate coverage, low levels of resources,
and programming that is of questionable efficacy. Nearly all private-based
services are restricted to a small number of states and are beyond the reach of
many poor and lower-middle-class families.

Although new advocacy groups have tried to raise awareness about autism
spectrum disorder in Mexico, there is little evidence that parents and other
stakeholders are mobilized politically to bring pressure for change in public
policy, either at the federal or state level.75 Instead, the political activities of
advocacy groups tend to be sporadic and limited to certain geographic areas, such
as the Federal District of Mexico City. The policy framework for children with
autism and other disabilities continues to be formulated at high levels, with little
input from parents or groups representing individuals with disabilities.

In explaining the relatively low levels of political action and the centralized
pattern of policy formulation, we draw on theoretical approaches that focus on
the political economy of group mobilization, the coherence of movements
representing individuals with disabilities, the dynamics of Mexico’s party system,
and the structure of the Mexican state. To be sure, much of the recent literature
associated with the minority group model of disability, which is grounded in
constructivism, has been extremely useful in clarifying the process through which
a “disability identity” is socially constructed for people with disabilities and their
families.76 Nevertheless the social process through which individuals experience
difference, social exclusion, and inadequate service provision is only a necessary,
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