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International Journal of Developmental Disabilities logoLink to International Journal of Developmental Disabilities
. 2017 Aug 13;65(1):49–57. doi: 10.1080/20473869.2017.1361672

A guide to indicators for the evaluation of specialist autism centres, based on the quality-of-life model

José Luis Cuesta Gómez a, Raquel de la Fuente Anuncibay a, Jerónimo González Bernal b, Miguel Angel García Coto c,*
PMCID: PMC8115526  PMID: 34141323

Abstract

Objective: The evaluation of individual and organizational quality of life through the Guide to Quality-of-Life Indicators and its promotion in English-speaking areas. This guide was initially designed for people living with Autism Spectrum Disorder in specialist autism centers in Spanish and Italian-speaking areas where its effectiveness has been validated.

Method: The Delphi technique is applied to the design of a qualitative investigation, with expert validation for the adaptation to English-speaking areas.

Results: The results have facilitated the adaptation and validation of the tool, which has 68 indicators grouped into six areas, for its application in both the planning and the evaluation processes of organizations and support services in English-speaking areas.

Conclusion: The adaptation of the questionnaire on QoL indicators for people with ASD is a reliable service-provision tool intended to assess integrated programs and to improve them throughout their life-cycles; this aim is approached from the objective perspective and through a subjective evaluation. The Guide will require further updating and review procedures as new needs and contexts emerge.

Keywords: quality of life, education, people with ASD , ASD, indicators, validation, adaptation, autism

Introduction

The mainstream commitment to quality, initiated some decades ago among private sector firms, has not been uniformly matched within social welfare organizations, among which, those providing support to people living with disabilities. Unlike the majority of private firms, social welfare organizations dedicate themselves to service provision that offers intangible products for the client or user. In consequence, their results are not easily quantifiable and are only evaluated and measured with difficulty. The need for the end-users of these services to evaluate them, so that improvements may be introduced, is evident in a clear tendency to define the services in the most tangible way possible. When organizations and services are focused on objectives for the improvement of quality of life, then autonomy, productivity, social inclusion, and satisfaction will all improve (Verdugo 2006).

Major problems arise in conceptual terms when we approach an evaluation and a quantification of the quality of life of people who present Autism Spectrum Disorders (ASD). These concepts concern people with serious difficulties, in many cases people who are unable to express needs, desires, physical, and emotional levels of satisfaction, etc.; indeed, people who are unable to speak and to share information on themselves, which are basic questions, if we seek to evaluate the degree of their quality of life (Rivière 1997a, 1997b, Burgess and Gutstein 2007).

There are various research works (Howlin 1997, Baron-Cohen and Bolton 1998, Frith 1999, Tamarit 2005, Plimley 2007, Sheldrick et al. 2012, Clark et al. 2015) in this area and ASD guides on good practice (Fuentes-Biggi et al. 2006). These works contribute information on programs, strategies, and educational support to compensate the difficulties that people with ASD present and that serve as a reference for the definition of indicators related to their quality of life.

Moreover, in the search for references on tools to evaluate quality of life, the results clearly reveal that some works are directly focused on people, while others are directed at organizations. However, we have found no tools that are adapted to people with ASD that take into account the serious communicative difficulties that they present and that cover certain specific aspects of the disabilities associated with ASD.

Following a review of the existing tools for the evaluation of quality of life, the majority were found to have no specific design for the group of people with ASD, Brown, Friefeld, and Schiller (1993), Conroy (2001), Cummins (1991), Gómez-Vela and Verdugo (2009), Librera et al. (2004), Schalock and Keith (1993), The Council on Quality and Leadership Canada (2005), The Council on Quality and Leadership EEUU (1997), The National Autistic Society (2001), Verdugo et al. (2006). Only one tool was identified, the Guía de Indicadores de Calidad de Vida para Organizaciones [Guide to Quality-of-Life Indicators for Organizations] by Cuesta (2009), that lists specific forms of support for people with autism and that certainly summarizes their needs in the form of measurable indicators. This tool was designed on the basis of contributions from the principal bibliographic references in ASD research by Baron-Cohen and Bolton (1998), Billstedt et al. (2011), Frith (1999), Howlin (1997), Martínez and Cuesta (2012), Plimley (2007), Robledo and García (2013), Tamarit (2005). It also incorporates guides to good practice in autism by such authors as Fuentes-Biggi et al. (2006) and Güemes et al. (2009), who have contributed information on programs, strategies and support services to alleviate the difficulties that people with ASD experience.

On the basis of these premises, the need to study the objective perspective in greater depth was proposed as a path toward the evaluation and the promotion of quality of life – without excluding the subjective perspective that takes into consideration the difficulty of evaluating the quality of life of people with ASD. This aspect has been affirmed by various authors such as Dunlap et al. (2008), Saldaña et al. (2009), Shipman et al. (2011), and van Heijst and Geurts (2015). We therefore consider that the design of a set of tools and scales is necessary to achieve the objective of this paper: the validation of indicators that will help us to identify and to improve specific conditions in the immediate environment of people with ASD. Hence, the validation of a Guide to QoL Indicators for People with ASD, in English speaking areas, that from the organizational perspective, will take into account the conditions that can contribute to those objectives in the most optimal manner. Indicators are developed in the Guide that refer to educational processes and interventions and to their need for continuity throughout life, as well as other dimensions that we should promote to ensure an integral quality of life.

The validation process consisted in obtaining reliable indicators in a particular context, with the Delphi method of expert consultation, considered as one of the most dependable qualitative prognostic methods.

The original tool was designed to evaluate centers for ASD in Spanish and Italian speaking areas, and was subsequently validated in both Argentina and Italy. The present paper reports the adaptation of the tool and its validation in the United Kingdom.

Method

On the basis of the Guide to QoL Indicators in Spanish, a two-way translation was completed from Spanish into English and a reverse translation from the English translation back into Spanish. The reverse-translation versions were carefully reviewed, to arrive at a consensus between four translators, with a view to avoiding possible unintended omissions in the first translations and other points that might imply important nuances. The final product was an equivalent English version of the terms in Spanish. The versions and final draft of the guide were reviewed by a British philologist.

The Guide was adapted and validated using the Delphi technique, in which consensus is sought between the criteria and opinions of a group of specialist experts in ASD. The Delphi technique is founded on two fundamental principles: collective intelligence and anonymous participation (López Gómez 2017). The objective is to achieve consensus based on discussion between experts in several rounds through an interactive process involving feedback and opinions that is at all times anonymous.

On the basis of an initial questionnaire answered by each expert, a summary in the form of a quantitative evaluation and written comments provide feedback for a new questionnaire. The process is repeated until a certain level of consensus and consistency is reached, after which a final document summarizes the convergence of the different views (Scott 2001, López Gómez 2017). The development of the Delphi technique has been growing and its diffusion to the point where its use is now widespread in different areas of knowledge and research. (Cabero and Infante 2014, Maxey and Kezar 2015, Reguant-Álvarez and Torrado-Fonseca 2016).

The anonymity of the contributions from the experts was ensured as well as controlled feedback, independent contributions, the representativeness of the group, and the triangulation of data and researchers (Taylor and Bodgan 1987, Ruiz Olabuénaga 1999, 2003, Flick 2004, Landeta 2002, Sabariego et al. 2004, and Cuesta 2013).

The tool provides a simple form of data collection that is gathered through the evaluation of 68 indicators, each with significant and interpretable scores. The indicators encompass key aspects referring to each dimension of the QoL model, attaching special importance to educational processes related with personal development: learning opportunities and life-long development of capabilities.

Moreover, a software program has been developed that presents the global scores in the form of graphs and the position of the organization with regard to each indicator, providing a clear overview of the organizational situation (Cuesta 2009).

In the first phase, a team of experts was formed. The project coordinators selected the group of experts in accordance with the following criteria: dedicated professionals in the field of ASD of recognized prestige, working in different geographical areas, with over five years of professional experience and who, in representation of various ASD-related disciplines, were expected to contribute complementary views.

The team was formed of eight professionals from specialized institutions in the United Kingdom. The experts represented complementary disciplines related with autism, psychology, education, and health. The experts joined the group with acknowledged experience of different evolutive stages, in the fields of diagnosis, direct intervention, family support, health care, and research.

The adaptation process began with an exploratory phase in which potential candidates were contacted and asked to join the panel of experts. The first version of the Guide to QoL Indicators was prepared to start the methodological sequence, consisting of organizing three rounds of correspondence by email (González Rey 2007), in each of which a qualitative review was conducted and consensus was reached over specific language issues.

On the basis of each of the three rounds, the proposals were analyzed and those with the highest level of consensus were integrated in the questionnaire.

  • •

    First round: the objective of the first round was the revision and completion of qualitative changes that the experts considered important, following the definition of the first version of the Guide to Indicators and the methodology for its administration. There was group-wide agreement in relation to the definition and the QoL model that justified the structure of the Guide, the representativeness of the fields, indicators and levels of interest, and the methodological application of the tool.

  • •

    Second round: the round began with an individualized response to each expert with information on how the individual contributions had been evaluated and general information for the whole group on the updated version of the Guide to QoL Indicators with previously included contributions that had achieved higher levels of consensus, leading to the second version of the Guide to QoL Indicators.

    The role of the panel of experts was to conduct a review of the contents and terminology of the Guide to QoL Indicators. The most significant contributions allowed us to improve the wording of the questionnaire and the understanding of the indicators, so that clearer information could be gathered.

  • •

    Third round: the round began with an individual response to each expert that included information on how their contributions had been taken into account, and general information to the group of experts on the updated version of the Guide to QoL Indicators, with previously included contributions that had achieved higher levels of consensus, resulting in the third version of the Guide to QoL Indicators.

In this last phase, all the contributions that had up until then achieved higher levels of consensus were summarized. The experts were then consulted to ensure agreement over the definitive version of the Guide and the methodology for its application.

The experts were also consulted over the advisability of adapting certain concepts with only low levels of consensus that had been proposed by some members. As the coordinators considered the concepts important, they were then revaluated.

Results

Having finalized the validation process, the Guide to QoL Indicators was produced; an evaluation tool from an objective perspective. Consideration was given to contextual factors that can have significant impact on the quality of life of the organizations in which people with ASD participate. The tool, as may be seen in Table 1, has 68 indicators grouped into six areas, all with various sub-headings:

Table 1. Guide to quality-of-life indicators for people with autism.

Guide to quality-of-life indicators for people with autism
AREA 1. Quality with reference to the individual
SUB-AREA 1.1. Quality from the perspective of the person with ASD
SUB-AREA 1.1.1. Physicalwell-being
Indicator 1: There are personalized and updated health-care plans
Indicator 2: The correct administration and monitoring of medication-related issues are guaranteed
Indicator 3: Personalized support in personal care and the development of independent living skills are assured
Indicator 4: Robust health and safety measures are developed for different environments
Indicator 5: Preventive and interventional personalized programs are in place to maximize the health of users of the service
 
SUB-AREA 1.1.2. Emotional wellbeing
Indicator 6: The environment promotes a positive emotional state in people with ASD
Indicator 7: The highest possible emotional stability is promoted in people with ASD
Indicator 8: Personalized positive intervention programs are developed in collaboration with the family of the person with ASD to support adaptive behavior
Indicator 9: People with ASD and/or their representatives are involved in the planning, execution and evaluation of personalized development plans
Indicator 10: People with ASD are given personalized care, support and access to counselors
 
SUB-AREA 1.1.3. Material welfare
Indicator 11: Privacy is respected
Indicator 12: Material security, choice and control over personal belongings are promoted and respected
 
SUB-AREA 1.1.4. Interpersonal relationships
Indicator 13: Significant social relationships are promoted
 
SUB-AREA 1.1.5. Personal development
Indicator 14: The development of personalized interests and skills is promoted.
Indicator 15: The continuous development of each person is promoted
 
SUB-AREA 1.1.6. Rights
Indicator 16: Respect for the person’s identity and dignity is guaranteed
Indicator 17: Physical safety and risk management is guaranteed
 
SUB-AREA 1.1.7. Self-determination
Indicator 18: Varied and tailored information and support are given to empower people with ASD
Indicator 19: People with ASD are involved in the planning of their lives and can take control over their lives
 
SUB-AREA 1.1.8. Social inclusion
Indicator 20: Social inclusion of the person with ASD is promoted
 
SUB-AREA 1.2. Quality from the family perspective
Indicator 21: Planned actions for the person with ASD take family expectations into account, unless otherwise specified by the person with ASD
Indicator 22: Family involvement in the organization is facilitated, unless otherwise specified by the person with ASD
Indicator 23: Family satisfaction is promoted
 
SUB-AREA 1.3. Quality from the perspective of the staff
Indicator 24: Staff professionalism; suggestions made and initiatives taken by staff members are recognized, valued and considered
Indicator 25: Staff responsibilities are in line with their job profiles
Indicator 26: Staff team work is promoted
Indicator 27: Staff satisfaction is promoted
Indicator 28: Staff involvement with organizational activities is promoted
 
AREA 2. Setting and follow up of personal development plans
SUB-AREA 2.1. Planning
Indicator 29: The needs and interests of people with ASD are assessed in different areas
Indicator 30: Personal Development Planning is developed and continuously adapted to the specific needs of each person
Indicator 31: Organizational planning always takes the needs of people with ASD into account
Indicator 32: Personal Development Planning always takes the needs of people with ASD into account
 
SUB-AREA 2.2. Care planning
Indicator 33: Care is planned and delivered in a person-centered way
Indicator 34: The delivery of care and support is adjusted to the needs and capabilities of each person
Indicator 35: Personal Development Plans are adjusted to the needs and capabilities of each person
 
SUB-AREA 2.3. Monitoring and evaluation plan
Indicator 36: There is ongoing monitoring and evaluation of each Personal Development Plan
 
AREA 3. Staff training
SUB-AREA 3.1. Autism awareness
Indicator 37: Initial training is provided to new members of staff
Indicator 38: Staff training is in line with the organization’s mission statement and ethos
Indicator 39: Each member of staff receives specific training relevant to their job role
Indicator 40: Professional development and refresher training is promoted
Indicator 41: The organization provides internal and external training opportunities
 
SUB-AREA 3.2. Person-centeredplanning (PCP)
Indicator 42: Staff members work in a person-centered way
Indicator 43: Personalized information is available on each person with ASD
Indicator 44: There is holistic knowledge of each person with ASD
Indicator 45: Care and support to each person with ASD is personalized
 
SUB-AREA 3.3. Attitudes and values
Indicator 46: Staff performance is in line with the organization’s mission statement and ethos
 
SUB-AREA 3.4. ASD research
Indicator 47: The organization promotes knowledge through active research in ASD
 
AREA 4. Structure andorganizationof services
SUB-AREA 4.1. Peer groups
Indicator 48: Peer groups take the needs of each person with ASD into consideration
Indicator 49: Key members of staff serve as a reference point for people with ASD
 
SUB-AREA 4.2. Activities
Indicator 50: Tasks and activities are systematically organized
Indicator 51: The active involvement of people with ASD and/or their representatives within the organization is encouraged
Indicator 52: Staff members receive continuous support and guidance
 
SUB-AREA 4.3. Timetables
Indicator 53: Timetables are adjusted to the needs of each person with ASD
Indicator 54: Staff rotas and shift plans take the needs of people with ASD into consideration
 
SUB-AREA 4.4. Communication/Coordination
Indicator 55: Information sharing is promoted within the organization
Indicator 56: Time is allocated for strategy meetings
Indicator 57: There is cooperation with other services related to people with ASD
Indicator 58: Communicational aids are available for people with ASD
 
SUB-AREA 4.5. Systematic evaluation of the service and/or the organization
Indicator 59: There are quality assurance systems in place for the organization
Indicator 60: The organization’s quality assurance systems include external reviews
 
SUB-AREA 4.6. Leadership
Indicator 61: The organization’s management team promotes ongoing improvement
 
AREA 5. Human resources, equipment, and premises
Indicator 62: Benefits are associated with human resources management
Indicator 63: Staff duties are properly organized
Indicator 64: Material resources are used in an advantageous way
Indicator 65: The physical environment favors the participation, accessibility and autonomy of the person with ASD
 
AREA 6. Community access, and social empowerment
Indicator 66: Agreements on co-operation are in place with other entities
Indicator 67: The organization is committed to its social responsibilities
Indicator 68: Social awareness is promoted
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Each indicator has four observable levels of interest, which means that the indicator is quantifiable and assures compliance or otherwise by all evaluators with the same objective evaluation criteria.

The Guide to QoL indicators implies objective and consensual administration, which is needed when having to place oneself in the position of people with ASD who present the serious communicative problems that have previously been mentioned.

The administration of the Guide to people living with ASD entailed:

  • 1.

    Assembling an Advisory Team of Experts that would evaluate the indicators and the levels of organizational interest (low/medium/high/maximum) needed to complete it;

  • 2.

    Planning the evaluation process;

  • 3.

    Working sessions with the purpose of recording, observing, analyzing the documentation, valuing the evidence, and reaching consensual agreement on the information;

  • 4.

    Tabulation of data presented in the form of a table to determine weaknesses and strengths, as well as to obtain a total score for the organization and to present an improvement plan.

One outcome of the validation process of the Guide to QoL Indicators was therefore the Results Table that is shown in Table 2.

Table 2. Results of the validation Process of the Guide to Quality-of-life Indicators.

  Low interest Medium interest High interest Maximum interest  
Perspective of the person with ASD Physical well-being             4 2   5 3 1 Individuals
Emotional well-being             7 8   6 10 9
Material welfare             12 11        
Interpersonal relationships         13              
Personal development             15 14        
Rights             16 17        
Self‐determination                     18 19
Social inclusion               20        
Family perspective   23   22 21              
Staff perspective   28 27 25 26     24        
Planning       31 29   30 32         Identifying needs
Care planning             35 33       34
Monitoring and evaluation plan               36        
Autism awareness         40 41 38 39       37 Staff training
Person-centered planning                 45 44 43 42
Attitudes and values         46              
ASD research         47              
Peer groups       49 48               Structure and organization
Activities       50 52     51        
Timetables             54 53        
Communication/Coordination       56 55   57 58        
Systematic evaluation of the service and/or organization   60     59              
Leadership         61              
Human Resources, equipment and premises   64   63 62             65 Resources
Community access and social empowerment 66 68     67               Community
  Low interest Medium interest High interest Maximum interest  
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The Results Table, Table 2, shows all of the 68 indicators arranged under the six groups in the column on the far right, and their respective sub-headings in the first column on the left. The panel of experts ranked all the indicators in order of importance by their level of interest (low/medium/high/maximum) for each area of quality of life shown in the top row. The highest rankings were given to the indicators (42, 43, 44 and 45) relating to Person-centered planning, while the indicators relating to Community access and social empowerment (66: Agreements on co-operation are in place with other entities, and 68: Social awareness is promoted), were ranked of low importance in the opinions of the experts. When assessing an organization, the Results Table (Table 2) will serve as a benchmark, providing information on the relative degree of achievement of each indicator within an organization, the relative importance that the organization attributes to each indicator, the number of indicators that have been achieved, are in process, or are unachieved, and their distribution, among other aspects. This information would contribute a useful overview of the strengths and weaknesses of the organization when preparing the final report and would be used for planning the improvement actions.

The process concluded with the preparation and presentation of a Final Report from the Advisory Team, which included general observations in the form of key indicators that provided guidance on which minimum aspects should be taken into account for improvements in the different areas, improvement patterns, and a proposal for the date of future reviews, where applicable.

With regard to the initial tool, certain changes arising from its application in the new context were considered in its adaptation:

  • •

    Some indicators were changed, highlighting the importance and the impact of the role of the family (indicator 8).

  • •

    Each indicator is supported by evidence that may be confirmed by observation and that quantify the indicator in objective terms; in the English version, statements 2 (Each person is included and has access to a peer group, even if they are not with them at all times) and 3 (People with ASD have the necessary staff support to participate in activities carried out in the community and people from the community are encouraged and supported to get involved as natural advocates for people with ASD) of Indicator 10 (People with ASD are given personalized care, support and access to counselors) were improved and a fourth statement (People with ASD are supported to access formal advocacy services and formal links with individual advocacy services are established) was added to provide further evidence.

  • •

    All of the statements used to provide evidence for each of the 68 indicators in the Guide cannot be included in this paper, due to restrictions on space. However, the complete Guide in Spanish and a description of its application and implementation may be consulted in Cuesta (2009). The full English version of the tool will be published in the near future.

  • •

    The need for access to community resources was reinforced, unifying levels of interest 3 and 4 of indicator 10 in the English version, and adding a fourth.

  • •

    An aspect of essential importance for people with ASD was included under the heading of obsessions, level of interest 1, indicator 14.

  • •

    In relation to indicator 16, referring to respect for identity and the dignity of the person, the English version, under level of interest 3, incorporates the idea that the organization, as well as supporting the rights of people with autism, should also support access to resources for the costs of legal defense.

  • •

    References to protocols in relation to physical intervention, which is a heavily legislated field, are included. Indicator 17, levels of interest 3 and 4.

  • •

    Under Indicator 22, facilitation of family involvement in the organization is contemplated, but it adds ‘unless the person with ASD states otherwise’; a point connected with the philosophy of person-centered planning that prioritizes the decisions of the people with disability. The same point is also highlighted with regard to family involvement in improvement processes (level of interest 4: maximum interest; indicator 23).

  • •

    In the area of research, the English version, under level of interest 3, indicator 47, includes the need to obtain the informed consent of the person with ASD.

  • •

    Finally, more indicators of maximum interest have been highlighted in the English version than in the original Spanish version of the guide in the field of professional training, structure, and organization and identification of professional needs.

Conclusion

The adaptation of the Guide to QoL Indicators has produced a tool that may be used to survey both the objective QoL dimension and the subjective evaluation, evident in some of its indicators and levels of (low/medium/high/maximum) interest. The English version highlights new indicators of interest in the field of professional training, structure and organization, and the identification of professional needs that are not found in the Italian and Spanish versions.

The tool is attuned to the objectives of the QoL indicators: it permits the measurement of the QoL dimensions; it facilitates the evaluation of personal results; it contributes information on the programs and supports changes at a personal, organizational, systematic and community level, as well as providing a framework for good practice in relation to quality (Schalock et al. 2007, Reinders and Schalock 2014, Van Loon 2015).

The tool potentially contributes a framework of reference for those organizations that wish to approach the challenge of introducing QoL based models through an integral concept that responds to such areas as the design of surroundings, service programs, life experiences, physical functioning, atmosphere, social networks, interpersonal relations, inclusion and participation in the community, personal capabilities, employment and living conditions, personal independence and control, and human and legal rights. Additionally, through the levels of interest, this evaluation tool makes the QoL model operative, enlarging the traditional concept of management-centered quality. It also guides the planning of services; serving as a solid complement to traditional quality-based management systems in organizations, which are centered more on management, without an in-depth approach to quality of life.

In relation to the possible context of application of the guide, the adaptations in the English version have taken research into account that refers to the current situation in both the USA and the UK (Robertson et al. 2007). These changes underline the potential of person-centered planning and its relation with improvements to the quality of life of people with intellectual disability, because of their effects on such indicators as independence, choice, daily life activities, relationships, and satisfaction, among others.

Some potential limitations to the use of the guide arise from the specific nature of people with ASD, requiring objective and consensual administration. It is therefore necessary to place oneself in the shoes of people with ASD when they present serious communicative limitations. Furthermore, as it is a tool oriented toward organizations and centers in which the QoL model is introduced, a preliminary training process is at times necessary to become familiar with the model.

Future lines of investigation and studies in this field will have to take into account the idea of service planning based on self-determination in all areas, as may be observed in current developments in States of North America. In this sense, the most advanced policies in services for people with disability are trying to organize support so that it is received in the community, rather than in institutions. It is a tendency that entails self-management of economic resources that the administration allocates to its own programs and services, so that people are able to choose freely within an open and varied market. Some lines of action suggest that new financing models should be followed, such as the DOORS Individual Budget Model. This particular model of financing is based on the assignment of services and support in a fair and equitative manner. The DOORS program is integral to the reform of the financing system of the Developmental Disabilities Division in the US state of Wyoming. Planning teams have the authority to take decisions on services and the freedom to select among service providers and Individual Budget Amounts are allocated to individuals.

The model is founded on certain basic principles: the prioritization of individual needs, higher allocations of resources for people with greater needs, the individualization of needs, support programs and priorities, and the opportunity for people to choose services, among others (Fortune et al. 2005).

In many states of the USA, this planning has been used in the organization of a coordinated system of policies that guide services and supportive programs. However, this tendency coexists with the assignation of specialized services that manage economic resources directly (Stancliffe and Lakin 2005).

In the field of disability, the current policy is to evaluate the impact of services on the person. Therefore, the most up-to-date models seek to do so from a multi-dimensional viewpoint that covers all areas, fields, and contexts of the life of the person, and that integrate three perspectives, the objective perspective– referring to the measurable conditions of the environment that in themselves help the person to have a better life –; the subjective perspective – the degree of satisfaction of each person –; and, the aspirations and expectations of that person (Schalock et al. 2007).

The work completed to date leads us to suggest future studies, comparing different models and analyzing possible cultural influences between different countries. It is therefore necessary to be attentive to new tendencies and advances that will improve the quality of life of people with ASD, with a view to continuous up-dating and adaptation of some items of the guide and to the development of complementary tools that evaluate their subjective quality of life.

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