**1. Introduction**

When mental health professionals and parents of children with autism spectrum disorders start working together, they bring into this relationship their own personal needs, concerns, priorities and responsibilities, which must be taken into consideration in order to create a mutually satisfactory and functional partnership. A partner is a person that one works with in order to achieve a common goal through shared decision-making and risk-taking. Some partnerships last for a short period of time and include casual encounters, while others last long and evolve through numerous official and unofficial encounters [1]. For a partnership model to work, all involved parties must understand how they feel about each other [2] and to recognize that family operates as a system. When parents and mental health professionals disagree, it is essential to resolve any conflict timely in order to avoid serious confrontations or even legal litigations [3].

Minuchin [4] was the first who introduced the theory of family systems and stated that individuals affect the context where they live and are in turn affected by it through a series of repeated interactions. So, whatever affects one family member affects the whole family in direct or indirect ways. Elman [5] describes families as the mobile that hangs over a baby's crib, with the pressure exerted on one end causing movement throughout. The relationships between family subsystems (spouses, parents and children, and sib‐ lings) determine the balance of the entire family [6] and interventions at any subsystem must aim to preserve this balance. For example, an intervention aiming at fostering the mother-child bond could affect the mother's relationship with her husband or her other children if the necessary actions are not taken. Family subsystems describe the interac‐

© 2013 Kalyva; licensee InTech. This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. © 2013 The Author(s). Licensee InTech. This chapter is distributed under the terms of the Creative Commons Attribution License http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

tions within the family context, whereas cohesion and adaptability describe the way in which family members interact.

must know the characteristics of the disorder and set realistic goals both for children with

Collaboration Between Parents of Children with Autism Spectrum Disorders and Mental Health Professionals

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523

Many researchers have established that parents of children with disabilities and mental health professionals must cooperate in order to design and implement an effective therapeu‐ tic process [20-23]. Therefore, parental involvement in the planning of proper therapeutic in‐ tervention for children with autism spectrum disorders was the primary target of many programs since the beginning of the 1980s [24]. Parents have been treated as partners, con‐ sultants, advocates, and supporters by the mental health professionals who offer these serv‐ ices. Parents often seek to work together with mental health professionals as they try to help their children overcome the difficulties that they face [25-26]. So, empowering the coopera‐ tion between parents and mental health professionals has been a cornerstone for many con‐ temporary care systems for individuals with disabilities [27]. In order to achieve this empowerment, it is important to increase parental autonomy and engagement in decision-

It is expected that the cooperation between parents and mental health professionals will result to better services for the children with disabilities, since the knowledge and the ex‐ perience that each person brings into this relationship are unique [29]. The problem is that many mental health professionals cannot treat parents as equal partners in this proc‐ ess [30]. Through their training, mental health professionals develop an area of expertise that places them almost automatically at the role of the expert. Sharing responsibility with parents, without having a clear hierarchy, creates a new structure that is opposite to the traditional nature of the relationship between parents and mental health professio‐ nals. However, the position and the authority of the mental health professionals have been challenged and transformed according to contemporary political and theoretical

This is the traditional cooperation model that is prominent in doctor-patient relation‐ ships, where the professionals use their position and their knowledge to decide what will happen. Parental participation is of secondary importance and compliance with the professionals' suggestions is self-evident. Parents are informed about the decisions that were taken without being allowed to express their opinions, feelings, needs, or wishes. Children are treated as the passive recipients of a therapy, while parents are thought not to have the time, the disposition, the skill or the knowledge to help their children. This relationship is very bureaucratic and rigid, because it disadvantages parents by making them dependent on the professional [31]. Moreover, when mental health professionals do not engage parents actively in their child's treatment there may be a disagreement be‐ tween the therapeutic goals they set [31-32]. The exclusion of parents from the therapeu‐ tic process has been highly criticized since the beginning of the 1970s, since the relationship between parents and mental health professionals becomes impersonal and the sense of trust is lost [33]. Therefore, parents started gradually being involved in the therapeutic process [34] and a lot of emphasis was placed on this involvement [35]. It

autism spectrum disorders and their families [19].

making regarding the therapeutic goals [28].

models, as can be seen below:

**1.1. Professional as experts**

Cohesion is inherent to the notions of engagement and disengagement. Some families with high levels of engagement do not have clear boundaries between the subsystems, are overly engaged in the therapeutic process and overprotective [4] and as a result do not allow the individual with autism spectrum disorders to develop a sense of autonomy. On the other hand, families with extremely low levels of engagement adopt rigid boundaries and do not interact with the child sufficiently. So, the child with autism spectrum disorders is left free, but without experiencing the necessary love and support. The degree to which a family ad‐ justs to the diagnosis of autism spectrum disorders depends to a large extent on the pre-ex‐ isting family cohesion and stability, while the disruption of family cohesion due to the birth of a child with autism spectrum disorders can lead to increased stress [7]. In order to deal with stress, families employ either internal coping strategies that include passive evaluation or active reframing or external coping strategies through social and spiritual support [8].

Adaptability refers to the family's ability to change its functioning when a stressful event occurs [9]. Family adaptability depends on the severity of autism spectrum disorders, as well as on the accumulation of the demands made on parents [10]. Rigid families do not change to face the stress, while chaotic families become unstable and face changes incon‐ sistently. The families that do not manage to adapt successfully are at risk of becoming isolated and dysfunctional [11]. According to family systems theory the disruption of communication among family members is a sign of dysfunction of the whole system and not of a specific individual. Therefore, mental health professionals should aim at chang‐ ing interaction patterns and not just individuals, without incriminating anyone. Many family members tend to blame the individual with autism spectrum disorders for the dif‐ ficulties that they experience, but with the appropriate guidance they perceive that mis‐ communication is often to blame [12].

Most studies conducted with families of individuals with disabilities are based on the as‐ sumption that families are homogeneous [13], but there are many features that differentiate families between them. For example, unemployed parents of a child with autism spectrum disorders have access to different resources than high-income parents [1]. Moreover, single mothers of children with autism spectrum disorders experience heightened stress, since they lack the practical, financial and moral support of their partner [14]. Cultural and contextual factors can also affect the ways that families cope with disabilities. First generation Ameri‐ cans with Chinese origin are afraid that their children with autism spectrum disorders will be stigmatized if they use sign language or other alternative forms of communication [15]. Parental reactions to their child's disorders must be viewed and interpreted within the so‐ cial, historical, and ecosystemic context of every family [16]. Parents initially experience a stage of shock [17], which is followed by a range of reactions that could eventually lead through consecutive reorganizations to adjustment to reality [18]. However, many parents regress to previous stages when they realize that their children with autism spectrum disor‐ ders face difficulties that will not disappear and that they need constant care. In order to support parents of children with autism spectrum disorders, mental health professionals must know the characteristics of the disorder and set realistic goals both for children with autism spectrum disorders and their families [19].

Many researchers have established that parents of children with disabilities and mental health professionals must cooperate in order to design and implement an effective therapeu‐ tic process [20-23]. Therefore, parental involvement in the planning of proper therapeutic in‐ tervention for children with autism spectrum disorders was the primary target of many programs since the beginning of the 1980s [24]. Parents have been treated as partners, con‐ sultants, advocates, and supporters by the mental health professionals who offer these serv‐ ices. Parents often seek to work together with mental health professionals as they try to help their children overcome the difficulties that they face [25-26]. So, empowering the coopera‐ tion between parents and mental health professionals has been a cornerstone for many con‐ temporary care systems for individuals with disabilities [27]. In order to achieve this empowerment, it is important to increase parental autonomy and engagement in decisionmaking regarding the therapeutic goals [28].

It is expected that the cooperation between parents and mental health professionals will result to better services for the children with disabilities, since the knowledge and the ex‐ perience that each person brings into this relationship are unique [29]. The problem is that many mental health professionals cannot treat parents as equal partners in this proc‐ ess [30]. Through their training, mental health professionals develop an area of expertise that places them almost automatically at the role of the expert. Sharing responsibility with parents, without having a clear hierarchy, creates a new structure that is opposite to the traditional nature of the relationship between parents and mental health professio‐ nals. However, the position and the authority of the mental health professionals have been challenged and transformed according to contemporary political and theoretical models, as can be seen below:

#### **1.1. Professional as experts**

tions within the family context, whereas cohesion and adaptability describe the way in

Cohesion is inherent to the notions of engagement and disengagement. Some families with high levels of engagement do not have clear boundaries between the subsystems, are overly engaged in the therapeutic process and overprotective [4] and as a result do not allow the individual with autism spectrum disorders to develop a sense of autonomy. On the other hand, families with extremely low levels of engagement adopt rigid boundaries and do not interact with the child sufficiently. So, the child with autism spectrum disorders is left free, but without experiencing the necessary love and support. The degree to which a family ad‐ justs to the diagnosis of autism spectrum disorders depends to a large extent on the pre-ex‐ isting family cohesion and stability, while the disruption of family cohesion due to the birth of a child with autism spectrum disorders can lead to increased stress [7]. In order to deal with stress, families employ either internal coping strategies that include passive evaluation or active reframing or external coping strategies through social and spiritual support [8].

Adaptability refers to the family's ability to change its functioning when a stressful event occurs [9]. Family adaptability depends on the severity of autism spectrum disorders, as well as on the accumulation of the demands made on parents [10]. Rigid families do not change to face the stress, while chaotic families become unstable and face changes incon‐ sistently. The families that do not manage to adapt successfully are at risk of becoming isolated and dysfunctional [11]. According to family systems theory the disruption of communication among family members is a sign of dysfunction of the whole system and not of a specific individual. Therefore, mental health professionals should aim at chang‐ ing interaction patterns and not just individuals, without incriminating anyone. Many family members tend to blame the individual with autism spectrum disorders for the dif‐ ficulties that they experience, but with the appropriate guidance they perceive that mis‐

Most studies conducted with families of individuals with disabilities are based on the as‐ sumption that families are homogeneous [13], but there are many features that differentiate families between them. For example, unemployed parents of a child with autism spectrum disorders have access to different resources than high-income parents [1]. Moreover, single mothers of children with autism spectrum disorders experience heightened stress, since they lack the practical, financial and moral support of their partner [14]. Cultural and contextual factors can also affect the ways that families cope with disabilities. First generation Ameri‐ cans with Chinese origin are afraid that their children with autism spectrum disorders will be stigmatized if they use sign language or other alternative forms of communication [15]. Parental reactions to their child's disorders must be viewed and interpreted within the so‐ cial, historical, and ecosystemic context of every family [16]. Parents initially experience a stage of shock [17], which is followed by a range of reactions that could eventually lead through consecutive reorganizations to adjustment to reality [18]. However, many parents regress to previous stages when they realize that their children with autism spectrum disor‐ ders face difficulties that will not disappear and that they need constant care. In order to support parents of children with autism spectrum disorders, mental health professionals

which family members interact.

522 Recent Advances in Autism Spectrum Disorders - Volume I

communication is often to blame [12].

This is the traditional cooperation model that is prominent in doctor-patient relation‐ ships, where the professionals use their position and their knowledge to decide what will happen. Parental participation is of secondary importance and compliance with the professionals' suggestions is self-evident. Parents are informed about the decisions that were taken without being allowed to express their opinions, feelings, needs, or wishes. Children are treated as the passive recipients of a therapy, while parents are thought not to have the time, the disposition, the skill or the knowledge to help their children. This relationship is very bureaucratic and rigid, because it disadvantages parents by making them dependent on the professional [31]. Moreover, when mental health professionals do not engage parents actively in their child's treatment there may be a disagreement be‐ tween the therapeutic goals they set [31-32]. The exclusion of parents from the therapeu‐ tic process has been highly criticized since the beginning of the 1970s, since the relationship between parents and mental health professionals becomes impersonal and the sense of trust is lost [33]. Therefore, parents started gradually being involved in the therapeutic process [34] and a lot of emphasis was placed on this involvement [35]. It should be pointed out, that even though this kind of relationship is outdated, there are still mental health professionals who impose themselves on parents.

**1.4. Τhe empowerment model**

**1.5. The negotiation model**

progress and interfere when they identify a problem.

be dysfunctional under the three following conditions:

if they apply various conflict resolution strategies.

otherwise, they will loose their self-esteem and become ineffective [46].

decrease the likelihood to cooperate [1].

share responsibility [41].

This model has added a social and systemic dimension to the consumer model [39], since parents have the right to choose the services that they will offer to their child and mental health professionals realize that family is a system and a social network. Every family com‐ prises of interconnected social relations within the context of the family itself as well as within the wider social groups (extended family, friends, associates, cultural groups). The system and the network affect the ways in which the family members view the individual with disabilities. Given that each family has different advantages, parents have a unique ad‐ justment method and mental health professionals need to understand and respect that. Men‐ tal health professionals should also help parents realize that they can monitor their child's

Collaboration Between Parents of Children with Autism Spectrum Disorders and Mental Health Professionals

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525

Partners use negotiation to reach common decisions and to resolve any disagreements that may arise. Negotiation can lead either to a common decision or to disagreement. Disagree‐ ments can come up for various reasons, such as the priorities that are set by each interested party [40]. The negotiation model states that the ways that parents and mental health profes‐ sionals view a situation or a problem, the options that they have to resolve it, and the extent to which they can face it, are affected by their roles – as well as the social, financial, and structural frames where they function. Therefore, according to this model, cooperation may

**1.** Either parents or mental health professionals do not have the intention or the skill to work with each other and to enter a cooperative relationship. Personal experiences may

**2.** Either parents or mental health professionals make all decisions and are not willing to

**3.** If the interests, the views, the priorities and the values of parents and mental health professionals are contradictory, then their relationship may become competitive – even

Some organizations are eager to engage parents in the therapeutic process not because they recognize parental rights but because of staff shortage or scarce financial resources [36]. Pa‐ rents should be involved in decision-making regarding their children because mental health professionals need their cooperation to do their job properly. Parents will also have a chance to establish and generalize at home the skills that their children have mastered [38]. In order for parents – and especially mothers – to function as therapists, they must devote a lot of time to meeting with mental health professionals to receive the proper training [42]. Parents of children with disabilities need guidance and support to be effective in their role [43-45];

For the negotiation model to work, it has to operate at five different levels: personal, in‐ terpersonal, organizational, institutional, and ideological [40]. The sense of cooperation

#### **1.2. The transitional relationship**

Mental health professionals started treating parents as co-therapists and realizing that the house can be used as a learning setting. They shared and transfered their skills to pa‐ rents to help them become more able, more confident, and more skilled. Parents partici‐ pate as «co-teachers» or «co-trainers» or «co-therapists» [18]. Mental health professionals have to adapt their methods in order to incorporate and to support their cooperation with parents. So, they have to discover ways to communicate with parents and to en‐ gage them in the therapeutic process. Parents who cooperate with mental health profes‐ sionals become more able, more knowledgeable and more assertive [36]. The main drawback of this model is the underlying assumption that all parents have the motive (and are able) to use this professional knowledge to help their child. It ignores the differ‐ ences that exist in parenting styles, family relationships, family resources, family values and cultural contexts. For example, some parents may not feel comfortable acting as «teachers» of their children [37]. Many interventions have focused solely on mothers and have left out fathers creating disruption to the family system. This relationship is not tru‐ ly cooperative, since mental health professionals make the basic decisions and are still in control [31].

#### **1.3. Parent as consumers**

The consumer model [31] stated that parents should have new rights and be given part of the control. Parents are viewed as consumers, who have the right to choose the appro‐ priate services and interventions for their children. It is the first time that mental health professionals recognize that parents possess specialized knowledge that they lack. Pa‐ rents use their knowledge to decide what they want and what they need for their child. Mental health professionals guide parents to make more effective and appropriate deci‐ sions. Parents may choose not to attend some of the suggested services that they do not consider suitable. Decision-making is reached after mutual exchange of ideas and with mutual respect. The objective is to reach a mutual agreement on the treatment that the child will follow. This model can be quite effective in various intervention settings [38]. The cooperation is very important, since parents have a greater sense of control. The services that adopt this model must be very flexible to provide individualized support [39]. This model presupposes that parents are capable to express and to assert their needs and the needs of their children. However, some parents cannot prioritize their needs or assume the responsibility of making important decisions. The concept of pa‐ rents as consumers who share resources may not be very realistic in a restrictive finan‐ cial context that offers minimal services. In this case the consumers do not necessarily buy the best services and many parents cannot afford the increased financial demands of the most effective therapies. This model is similar to counseling that is offered to parents to help them resolve some personal issues.

#### **1.4. Τhe empowerment model**

should be pointed out, that even though this kind of relationship is outdated, there are

Mental health professionals started treating parents as co-therapists and realizing that the house can be used as a learning setting. They shared and transfered their skills to pa‐ rents to help them become more able, more confident, and more skilled. Parents partici‐ pate as «co-teachers» or «co-trainers» or «co-therapists» [18]. Mental health professionals have to adapt their methods in order to incorporate and to support their cooperation with parents. So, they have to discover ways to communicate with parents and to en‐ gage them in the therapeutic process. Parents who cooperate with mental health profes‐ sionals become more able, more knowledgeable and more assertive [36]. The main drawback of this model is the underlying assumption that all parents have the motive (and are able) to use this professional knowledge to help their child. It ignores the differ‐ ences that exist in parenting styles, family relationships, family resources, family values and cultural contexts. For example, some parents may not feel comfortable acting as «teachers» of their children [37]. Many interventions have focused solely on mothers and have left out fathers creating disruption to the family system. This relationship is not tru‐ ly cooperative, since mental health professionals make the basic decisions and are still in

The consumer model [31] stated that parents should have new rights and be given part of the control. Parents are viewed as consumers, who have the right to choose the appro‐ priate services and interventions for their children. It is the first time that mental health professionals recognize that parents possess specialized knowledge that they lack. Pa‐ rents use their knowledge to decide what they want and what they need for their child. Mental health professionals guide parents to make more effective and appropriate deci‐ sions. Parents may choose not to attend some of the suggested services that they do not consider suitable. Decision-making is reached after mutual exchange of ideas and with mutual respect. The objective is to reach a mutual agreement on the treatment that the child will follow. This model can be quite effective in various intervention settings [38]. The cooperation is very important, since parents have a greater sense of control. The services that adopt this model must be very flexible to provide individualized support [39]. This model presupposes that parents are capable to express and to assert their needs and the needs of their children. However, some parents cannot prioritize their needs or assume the responsibility of making important decisions. The concept of pa‐ rents as consumers who share resources may not be very realistic in a restrictive finan‐ cial context that offers minimal services. In this case the consumers do not necessarily buy the best services and many parents cannot afford the increased financial demands of the most effective therapies. This model is similar to counseling that is offered to parents

still mental health professionals who impose themselves on parents.

**1.2. The transitional relationship**

524 Recent Advances in Autism Spectrum Disorders - Volume I

control [31].

**1.3. Parent as consumers**

to help them resolve some personal issues.

This model has added a social and systemic dimension to the consumer model [39], since parents have the right to choose the services that they will offer to their child and mental health professionals realize that family is a system and a social network. Every family com‐ prises of interconnected social relations within the context of the family itself as well as within the wider social groups (extended family, friends, associates, cultural groups). The system and the network affect the ways in which the family members view the individual with disabilities. Given that each family has different advantages, parents have a unique ad‐ justment method and mental health professionals need to understand and respect that. Men‐ tal health professionals should also help parents realize that they can monitor their child's progress and interfere when they identify a problem.

#### **1.5. The negotiation model**

Partners use negotiation to reach common decisions and to resolve any disagreements that may arise. Negotiation can lead either to a common decision or to disagreement. Disagree‐ ments can come up for various reasons, such as the priorities that are set by each interested party [40]. The negotiation model states that the ways that parents and mental health profes‐ sionals view a situation or a problem, the options that they have to resolve it, and the extent to which they can face it, are affected by their roles – as well as the social, financial, and structural frames where they function. Therefore, according to this model, cooperation may be dysfunctional under the three following conditions:


Some organizations are eager to engage parents in the therapeutic process not because they recognize parental rights but because of staff shortage or scarce financial resources [36]. Pa‐ rents should be involved in decision-making regarding their children because mental health professionals need their cooperation to do their job properly. Parents will also have a chance to establish and generalize at home the skills that their children have mastered [38]. In order for parents – and especially mothers – to function as therapists, they must devote a lot of time to meeting with mental health professionals to receive the proper training [42]. Parents of children with disabilities need guidance and support to be effective in their role [43-45]; otherwise, they will loose their self-esteem and become ineffective [46].

For the negotiation model to work, it has to operate at five different levels: personal, in‐ terpersonal, organizational, institutional, and ideological [40]. The sense of cooperation encourages the productive combination of knowledge, skills, and sensitivities from both parents and mental health professionals. The six elements that characterize a cooperative relationship and differentiate it from other types of relationships are [47]: a) cooperation is optional; b) cooperation demands equity among the participants; c) cooperation is based on mutual goals; d) cooperation depends on shared responsibility and decisionmaking; e) people who cooperate share their resources; and f) people who cooperate are equally responsible for the outcome.

by mental health professionals, they end up being confused and they need guidance to make the right choices and decisions [1]. Therefore, mental health professionals who work therapeutically with the parents of children with autism spectrum disorders should assume

Collaboration Between Parents of Children with Autism Spectrum Disorders and Mental Health Professionals

http://dx.doi.org/10.5772/53966

527

Parents need to be extremely persistent in order to ensure the services and the provi‐ sions that are necessary for their children with autism spectrum disorders [58-59]. Pa‐ rents started questioning the power of mental health professionals when they formed groups to fight for their rights. An extreme example of disappointment with mental health professionals was the creation of a centre of counseling and support for the pa‐ rents of children with special needs that was created by parents and to which mental health professionals had no access [2]. The parents who founded this centre stressed that it provided them with the opportunity to talk and to share their experiences – giving

Despite the fact that parents were overall satisfied with the mental health professionals they had worked with in the past, they generally felt that they had to fight in order to access the services that their children needed. They reported that many mental health professionals failed to communicate with each other and with the parents and this created a heightened sense of dissatisfaction. This was due to the fact that most children were monitored simulta‐ neously by several mental health professionals who seemed to work in isolation without sharing information and common therapeutic goals. Furthermore, many parents supported that the services they received did not suffice to address their children's multiple and com‐ plex needs [3]. Moreover, some parents claim that they are tired of being accused for the problems that their children face [60] and that constant criticism does not help them become better and more effective parents. Paradoxically, although some mental health professionals view mothers as guilty, they involve them at the same time in their children's therapy [61]. Crawford and Simonoff [62] studied the attitudes of parents of children attending schools for emotional and behavioral disorders. Many parents believed that they felt stigmatized and isolated because of the problems that their children were facing. Although the stigma accompanying mental health problems or other disorders, such as autism spectrum disor‐ ders is well recognized, there is limited research on the topic. Parents feel lonely and with‐ out any support, but they hesitate to share their concerns with others, because they are afraid that they will be further stigmatized and held responsible for their children's prob‐ lems. So, it is not surprising that parents were excited to meet with other parents who face

Parents of children with special needs are often dissatisfied with the way that mental health professionals behave and with the attitudes that they express. However, most relevant re‐ search has not studied the actual interaction between parents and mental health professio‐ nals, but they are based on parental anecdotal evidence that is usually negative [63-64]. If the behaviors that parents report are accurate, then they constitute a breach of the professio‐ nal code of ethics [65] and should be seriously taken into consideration. On the other hand, many parents appreciate that mental health professionals try to understand the family dy‐ namics and to address the individual needs of every family member [66] and there are also

them, thus, the strength to deal with their daily problems.

similar problems and can offer them valuable support.

also a counseling role [57].

Within this model, mental health professionals should have a clearly defined relationship with parents that has four predetermined goals [48]: a) include parents in decision-making about their child; b) train parents to participate in decision-making about their child; c) help parents therapeutically to deal with some issues that stop them from functioning more effec‐ tively; and d) render parents capable to work effectively and meaningfully with their child through empowerment.

The negotiation model has many functioning aspects that facilitate the development of a co‐ operative relationship between parents and mental health professionals, since it is develop‐ mental and parents are not viewed as static agents. They are encouraged to develop and improve their skills to become more effective and to work on their personal issues. In order to meet with the demands of this new role, mental health professionals are often called to take on multiple roles and to become more flexible. They may need to act as mediators be‐ tween the parents and other agents, as well as to fight for the rights of the parents and their children with disabilities – especially in times of financial and moral crisis.

#### **1.6. How do parents feel about mental health professionals?**

Individuals with autism spectrum disorders depend on their families for daily care and sup‐ port that are essential for the successful implementation of any therapeutic intervention [49]. Therefore, it has been acknowledged that the needs of all the family members should be tak‐ en into consideration when designing an intervention [50]. Many highly recommended treatments for autism spectrum disorders [see 49, for more information] – such as Applied Behavioral Analysis [51], TEACCH [52] and Portage [53] – stress the importance of active parental participation in the therapeutic process, which results from the proper cooperation with mental health professionals. However, many parents claim that their participation in their children's therapy is minimal and restrained to six-monthly briefing meetings, while they are not informed that they could be more actively involved in the treatment process [54]. Parents must be treated as partners during the planning, implementation, and evalua‐ tion of the therapeutic approach and not just as observers or clients [55].

Many parents complain because they have to wait a long time to diagnose their children with autism spectrum disorders and they need to visit up to four different mental health professionals [54]. In a small scale study where parents of 25 children with autism spectrum disorders were interviewed, it was found that these parents have to take their children to different therapeutic settings, which is extremely time consuming. They work together with an average of six mental health professionals for a total of approximately 37 hours per week [56]. Since parents are often exposed to many diverse opinions and suggestions expressed by mental health professionals, they end up being confused and they need guidance to make the right choices and decisions [1]. Therefore, mental health professionals who work therapeutically with the parents of children with autism spectrum disorders should assume also a counseling role [57].

encourages the productive combination of knowledge, skills, and sensitivities from both parents and mental health professionals. The six elements that characterize a cooperative relationship and differentiate it from other types of relationships are [47]: a) cooperation is optional; b) cooperation demands equity among the participants; c) cooperation is based on mutual goals; d) cooperation depends on shared responsibility and decisionmaking; e) people who cooperate share their resources; and f) people who cooperate are

Within this model, mental health professionals should have a clearly defined relationship with parents that has four predetermined goals [48]: a) include parents in decision-making about their child; b) train parents to participate in decision-making about their child; c) help parents therapeutically to deal with some issues that stop them from functioning more effec‐ tively; and d) render parents capable to work effectively and meaningfully with their child

The negotiation model has many functioning aspects that facilitate the development of a co‐ operative relationship between parents and mental health professionals, since it is develop‐ mental and parents are not viewed as static agents. They are encouraged to develop and improve their skills to become more effective and to work on their personal issues. In order to meet with the demands of this new role, mental health professionals are often called to take on multiple roles and to become more flexible. They may need to act as mediators be‐ tween the parents and other agents, as well as to fight for the rights of the parents and their

Individuals with autism spectrum disorders depend on their families for daily care and sup‐ port that are essential for the successful implementation of any therapeutic intervention [49]. Therefore, it has been acknowledged that the needs of all the family members should be tak‐ en into consideration when designing an intervention [50]. Many highly recommended treatments for autism spectrum disorders [see 49, for more information] – such as Applied Behavioral Analysis [51], TEACCH [52] and Portage [53] – stress the importance of active parental participation in the therapeutic process, which results from the proper cooperation with mental health professionals. However, many parents claim that their participation in their children's therapy is minimal and restrained to six-monthly briefing meetings, while they are not informed that they could be more actively involved in the treatment process [54]. Parents must be treated as partners during the planning, implementation, and evalua‐

Many parents complain because they have to wait a long time to diagnose their children with autism spectrum disorders and they need to visit up to four different mental health professionals [54]. In a small scale study where parents of 25 children with autism spectrum disorders were interviewed, it was found that these parents have to take their children to different therapeutic settings, which is extremely time consuming. They work together with an average of six mental health professionals for a total of approximately 37 hours per week [56]. Since parents are often exposed to many diverse opinions and suggestions expressed

children with disabilities – especially in times of financial and moral crisis.

tion of the therapeutic approach and not just as observers or clients [55].

**1.6. How do parents feel about mental health professionals?**

equally responsible for the outcome.

526 Recent Advances in Autism Spectrum Disorders - Volume I

through empowerment.

Parents need to be extremely persistent in order to ensure the services and the provi‐ sions that are necessary for their children with autism spectrum disorders [58-59]. Pa‐ rents started questioning the power of mental health professionals when they formed groups to fight for their rights. An extreme example of disappointment with mental health professionals was the creation of a centre of counseling and support for the pa‐ rents of children with special needs that was created by parents and to which mental health professionals had no access [2]. The parents who founded this centre stressed that it provided them with the opportunity to talk and to share their experiences – giving them, thus, the strength to deal with their daily problems.

Despite the fact that parents were overall satisfied with the mental health professionals they had worked with in the past, they generally felt that they had to fight in order to access the services that their children needed. They reported that many mental health professionals failed to communicate with each other and with the parents and this created a heightened sense of dissatisfaction. This was due to the fact that most children were monitored simulta‐ neously by several mental health professionals who seemed to work in isolation without sharing information and common therapeutic goals. Furthermore, many parents supported that the services they received did not suffice to address their children's multiple and com‐ plex needs [3]. Moreover, some parents claim that they are tired of being accused for the problems that their children face [60] and that constant criticism does not help them become better and more effective parents. Paradoxically, although some mental health professionals view mothers as guilty, they involve them at the same time in their children's therapy [61].

Crawford and Simonoff [62] studied the attitudes of parents of children attending schools for emotional and behavioral disorders. Many parents believed that they felt stigmatized and isolated because of the problems that their children were facing. Although the stigma accompanying mental health problems or other disorders, such as autism spectrum disor‐ ders is well recognized, there is limited research on the topic. Parents feel lonely and with‐ out any support, but they hesitate to share their concerns with others, because they are afraid that they will be further stigmatized and held responsible for their children's prob‐ lems. So, it is not surprising that parents were excited to meet with other parents who face similar problems and can offer them valuable support.

Parents of children with special needs are often dissatisfied with the way that mental health professionals behave and with the attitudes that they express. However, most relevant re‐ search has not studied the actual interaction between parents and mental health professio‐ nals, but they are based on parental anecdotal evidence that is usually negative [63-64]. If the behaviors that parents report are accurate, then they constitute a breach of the professio‐ nal code of ethics [65] and should be seriously taken into consideration. On the other hand, many parents appreciate that mental health professionals try to understand the family dy‐ namics and to address the individual needs of every family member [66] and there are also quite a few parents who mention that mental health professionals have done their best to help them and their children with autism spectrum disorders [54].

another person. However, the researcher stressed that the perception of the staff did not cor‐

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529

Some mental health professionals recognize the importance of working together with the parents, but they claim that they are not adequately trained or prepared to do so and they receive no support from their services [72-74]. To address this issue, it is important to better understand the skills and the behaviors that mental health professionals need in order to learn how to cooperate with parents [75-76]. Interpersonal skills, such as sensitivity towards the parents, clarity and respect are usually highly appreciated by parents who work togeth‐

Cooperation is a term that was recently introduced to literature looking at the relationship between parents and mental health professionals, but is quite difficult to accomplish in prac‐ tice given that it means different things to different people. Cooperation can be viewed as basic principle or theoretical viewpoint that is based on fundamental power exchange [78]. However, there are many organizational, geographical or financial obstacles in the coopera‐ tion between different groups of mental health professionals or between mental health pro‐ fessionals and service users – that is, parents of children with disabilities [79-81]. The potential cooperation between mental health professionals and parents is based mainly on the anticipation that there will be an increase in the number and quality of offered services. However, many mental health professionals feel threatened when they have to choose who

The cooperation between parents and mental health professionals is not just desirable but also mandatory, since it is enforced by law in many countries [20, 83]. It has been widely accepted that a healthy cooperative relationship between parents and mental health professionals can lead to timely conflict resolution and benefit children with disa‐ bilities [84-85]. This cooperation is even more vital in early intervention programs, which are family-centered [86] and through parental empowerment [87] there is a greater sense

Most relevant studies show that parents and mental health professionals are familiar with cooperative relationships through their interpersonal experiences [89-90]. Functional cooperative relationships are characterized by trust, respect, communication and shared vision that are essential to make decisions that will lead to increased communication [91], inclusion [92], and appropriate service provision for children with disabilities [93]. Some research also shows that teachers prefer to have a closer and more meaningful re‐ lationship with parents of children with disabilities [94]. The existence of supportive rela‐ tionships among parents and mental health professionals is the most important

Despite the existing legislations in some European countries and the wishes of both pa‐ rents and mental health professionals, it is often extremely difficult to create successful and functional cooperative relationships [95-96]. For example, in the context of family-

respond to reality and to the actual needs of the families of the service users.

er with mental health professionals in early intervention settings [77].

**1.8. Cooperation between parents and mental health professionals**

will have access to each service, especially when the choices are limited [82].

of parental accomplishment [88].

determinant of a successful cooperative relationship [75].

The mental health professionals who interact with children with autism spectrum disorders and their families come from different educational and theoretical backgrounds, as well as from different disciplines: specialized professionals (such as psychologists, speech thera‐ pists, and social workers), doctors, teachers or students. Despite the fact that the contribu‐ tion of mental health professionals to the planning and effectiveness of the treatment has been widely acknowledged, more research is needed on identifying how they deal with practical problems that arise during the course of their interactions with parents of children with autism spectrum disorders. The role of mental health professionals and therapists has been approached primarily by the psychoanalytic perspective and most studies have fo‐ cused only on the role of the teacher of children with autism spectrum disorders.

#### **1.7. How do mental health professionals feel about parents?**

The beliefs and the assumptions that mental health professionals hold regarding parental contribution to the appearance and maintenance of their children's problematic behaviors and disorders greatly affect their choice of offered therapies and the intervention strategies that they use when interacting with the specific families [67]. Even the term «professional» has been controversial, since some refer to the traditional definition of professional (e.g., doctors, lawyers, architects, university professors), while others use this term to refer to most working people (e.g., nurses, social workers, and teachers) [68]. The term «mental health professionals» is now used to include all the educated people who have received the appropriate training to work with individuals with disabilities. It is used to make the dis‐ tinction between trained staff and volunteers, carers, or untrained helping staff who work with individuals with disabilities.

There are different sources of «socially acceptable» power for mental health professionals [69]: physical power, power to provide resources, power of profession, power of specializa‐ tion and personal power. For many years now, the role of mental health professionals is pre‐ determined to provide them with the power and the right to use their knowledge and their experience as they wish. They have resources at their disposal that they can share with chil‐ dren with disabilities and their families, as well as the specialized knowledge that they have acquired through their training. Mental health professionals are usually considered experts, since they are knowledgeable about an area or a topic. In case that some parents disagree or refuse to cooperate with mental health professionals, the latter have the right to stop provid‐ ing their services. Mental health professionals can have considerable power and so many pa‐ rents treat them with respect.

The attitudes and perceptions of mental health professionals regarding their relation with the parents of children with disabilities have not been adequately researched [70]. Smets [71] explored staff attitudes regarding parental involvement in a service for individuals with in‐ tellectual disabilities and found that staff believed that parents were either unaware or indif‐ ferent to their children's problems. Staff believed that parents were limited to the role of the external observer and they were happy to defer the responsibility of caring for their child to another person. However, the researcher stressed that the perception of the staff did not cor‐ respond to reality and to the actual needs of the families of the service users.

Some mental health professionals recognize the importance of working together with the parents, but they claim that they are not adequately trained or prepared to do so and they receive no support from their services [72-74]. To address this issue, it is important to better understand the skills and the behaviors that mental health professionals need in order to learn how to cooperate with parents [75-76]. Interpersonal skills, such as sensitivity towards the parents, clarity and respect are usually highly appreciated by parents who work togeth‐ er with mental health professionals in early intervention settings [77].

#### **1.8. Cooperation between parents and mental health professionals**

quite a few parents who mention that mental health professionals have done their best to

The mental health professionals who interact with children with autism spectrum disorders and their families come from different educational and theoretical backgrounds, as well as from different disciplines: specialized professionals (such as psychologists, speech thera‐ pists, and social workers), doctors, teachers or students. Despite the fact that the contribu‐ tion of mental health professionals to the planning and effectiveness of the treatment has been widely acknowledged, more research is needed on identifying how they deal with practical problems that arise during the course of their interactions with parents of children with autism spectrum disorders. The role of mental health professionals and therapists has been approached primarily by the psychoanalytic perspective and most studies have fo‐

The beliefs and the assumptions that mental health professionals hold regarding parental contribution to the appearance and maintenance of their children's problematic behaviors and disorders greatly affect their choice of offered therapies and the intervention strategies that they use when interacting with the specific families [67]. Even the term «professional» has been controversial, since some refer to the traditional definition of professional (e.g., doctors, lawyers, architects, university professors), while others use this term to refer to most working people (e.g., nurses, social workers, and teachers) [68]. The term «mental health professionals» is now used to include all the educated people who have received the appropriate training to work with individuals with disabilities. It is used to make the dis‐ tinction between trained staff and volunteers, carers, or untrained helping staff who work

There are different sources of «socially acceptable» power for mental health professionals [69]: physical power, power to provide resources, power of profession, power of specializa‐ tion and personal power. For many years now, the role of mental health professionals is pre‐ determined to provide them with the power and the right to use their knowledge and their experience as they wish. They have resources at their disposal that they can share with chil‐ dren with disabilities and their families, as well as the specialized knowledge that they have acquired through their training. Mental health professionals are usually considered experts, since they are knowledgeable about an area or a topic. In case that some parents disagree or refuse to cooperate with mental health professionals, the latter have the right to stop provid‐ ing their services. Mental health professionals can have considerable power and so many pa‐

The attitudes and perceptions of mental health professionals regarding their relation with the parents of children with disabilities have not been adequately researched [70]. Smets [71] explored staff attitudes regarding parental involvement in a service for individuals with in‐ tellectual disabilities and found that staff believed that parents were either unaware or indif‐ ferent to their children's problems. Staff believed that parents were limited to the role of the external observer and they were happy to defer the responsibility of caring for their child to

cused only on the role of the teacher of children with autism spectrum disorders.

help them and their children with autism spectrum disorders [54].

528 Recent Advances in Autism Spectrum Disorders - Volume I

**1.7. How do mental health professionals feel about parents?**

with individuals with disabilities.

rents treat them with respect.

Cooperation is a term that was recently introduced to literature looking at the relationship between parents and mental health professionals, but is quite difficult to accomplish in prac‐ tice given that it means different things to different people. Cooperation can be viewed as basic principle or theoretical viewpoint that is based on fundamental power exchange [78]. However, there are many organizational, geographical or financial obstacles in the coopera‐ tion between different groups of mental health professionals or between mental health pro‐ fessionals and service users – that is, parents of children with disabilities [79-81]. The potential cooperation between mental health professionals and parents is based mainly on the anticipation that there will be an increase in the number and quality of offered services. However, many mental health professionals feel threatened when they have to choose who will have access to each service, especially when the choices are limited [82].

The cooperation between parents and mental health professionals is not just desirable but also mandatory, since it is enforced by law in many countries [20, 83]. It has been widely accepted that a healthy cooperative relationship between parents and mental health professionals can lead to timely conflict resolution and benefit children with disa‐ bilities [84-85]. This cooperation is even more vital in early intervention programs, which are family-centered [86] and through parental empowerment [87] there is a greater sense of parental accomplishment [88].

Most relevant studies show that parents and mental health professionals are familiar with cooperative relationships through their interpersonal experiences [89-90]. Functional cooperative relationships are characterized by trust, respect, communication and shared vision that are essential to make decisions that will lead to increased communication [91], inclusion [92], and appropriate service provision for children with disabilities [93]. Some research also shows that teachers prefer to have a closer and more meaningful re‐ lationship with parents of children with disabilities [94]. The existence of supportive rela‐ tionships among parents and mental health professionals is the most important determinant of a successful cooperative relationship [75].

Despite the existing legislations in some European countries and the wishes of both pa‐ rents and mental health professionals, it is often extremely difficult to create successful and functional cooperative relationships [95-96]. For example, in the context of familycentered early intervention cooperation remains an utopia [86]. Although mental health professionals seem to favor cooperative relationships with parents, research shows that there is a big gap between theory and practice [97]. Relevant studies [98] that were con‐ ducted using either focus groups or interviews and questionnaires showed that the basic problem is that mental health professionals do not treat parents as equal partners and continue to maintain control. So, the failure to establish cooperative relationships is due to the fact that that there are no trusting and empowering relationships between parents and mental health professionals [11, 99].

are skilled and well trained. Mental health professionals should have high expectations from the children that they work with if they are going to try hard to make some prog‐ ress and reach the goals that they have set. Parents appreciate the mental health profes‐ sionals who have the strength and the will to be constantly updated about the new developments in their areas of expertise. Most mental health professionals referred to the skills that they expect from their colleagues but not from parents (this partly reflects

Collaboration Between Parents of Children with Autism Spectrum Disorders and Mental Health Professionals

http://dx.doi.org/10.5772/53966

531

**e.** trust: this term has three different meanings according to the context where it is used. It means reliability in the sense that mental health professionals should honor their prom‐ ises any way they can. It is equal to security, in the sense that parents need to feel that their children with disabilities are safe both physically and emotionally when in the company of mental health professionals. The third dimension of trust is the discretion that mental health professionals should possess regarding the information that they

**f.** respect: a sign of respect is that mental health professionals treat the child with disabili‐ ties as a human being and not as a label or a diagnosis, that they are polite, considerate, punctual, and up-to-date with recent developments in the field. Several parents men‐ tioned that these simple rules of courtesy and proper behavior are often overlooked in daily encounters. Many mental health professionals admit that the lack of respect to pa‐

It is interesting to note that parents and mental health professionals seem to agree on what they think constitutes a desirable and proper cooperative relationship. They may differ in the importance that they place on each factor and in whether they identify it as essential or not for the success of the cooperation. Both sides recognize that for a cooper‐ ative relationship to work, both parents and mental health professionals should do their best keeping in mind the interests of the child with disabilities. This study [104] empha‐ sizes that it is imperative to conduct further research to create guidelines to delineate the relationship between parents and mental health professionals, rendering it thus more sat‐ isfactory and more effective. This is the aim of the present study that aspires through the use of a partnership protocol to delineate the relationship between parents of children with autism spectrum disorders and mental health professionals – a need that was iden‐

Because of the heterogeneity of the symptoms and characteristics of autism spectrum disor‐ ders, the diagnosis usually does not provide useful suggestions for the appropriate treat‐ ment [106]. Successful therapeutic interventions develop when parents and mental health professionals work together as a coordinated and cooperative team [107]. In order to deal with the needs of children with autism spectrum disorders and their families the program COMPASS was created [54], which aims at the cooperation between staff and parents to de‐ sign the most appropriate therapeutic intervention for each child. The greatest challenge that mental health professionals who work with the families of children with autism spec‐ trum disorders have to face is to ensure that these children attend the therapeutic interven‐ tions that best suit their unique and complicated needs [108]. Parental attitudes and parental

their lack of trust in a cooperative relationship with the parents).

rents can cause severe damage to the therapeutic relationship.

share with colleagues about a child.

tified also by other researchers [16, 105].

This failure to create cooperative relationships could also be caused by the inadequate defi‐ nition of cooperation [100] that hinders the quest for a common goal through functional in‐ teractions [101-103]. There are six factors that are essential for the establishment of a cooperative relationship between parents of children with disabilities and mental health professionals and form the basis of the partnership protocol that will be presented later on in the chapter [104]. These factors are:


are skilled and well trained. Mental health professionals should have high expectations from the children that they work with if they are going to try hard to make some prog‐ ress and reach the goals that they have set. Parents appreciate the mental health profes‐ sionals who have the strength and the will to be constantly updated about the new developments in their areas of expertise. Most mental health professionals referred to the skills that they expect from their colleagues but not from parents (this partly reflects their lack of trust in a cooperative relationship with the parents).

centered early intervention cooperation remains an utopia [86]. Although mental health professionals seem to favor cooperative relationships with parents, research shows that there is a big gap between theory and practice [97]. Relevant studies [98] that were con‐ ducted using either focus groups or interviews and questionnaires showed that the basic problem is that mental health professionals do not treat parents as equal partners and continue to maintain control. So, the failure to establish cooperative relationships is due to the fact that that there are no trusting and empowering relationships between parents

This failure to create cooperative relationships could also be caused by the inadequate defi‐ nition of cooperation [100] that hinders the quest for a common goal through functional in‐ teractions [101-103]. There are six factors that are essential for the establishment of a cooperative relationship between parents of children with disabilities and mental health professionals and form the basis of the partnership protocol that will be presented later on

**a.** communication: parents stressed that communication with mental health professionals must be honest, frequent and open, with no hidden agendas. Mental health professio‐ nals should inform parents also about unpleasant developments in the therapeutic process but without becoming rude or aggressive and without using jargon. Parents want to have access to information regarding other services that are available for their children. Communication should be a two-way process, with both parents and mental health professionals listening to each other without being critical. Mental health profes‐ sionals seem to agree about the necessity of open and honest communication with the

**b.** commitment: mental health professionals should not view what they do as a simple job that pays for their expenses and treat children with disabilities just as another client or case that is filed. They must value the individual and pay attention to the relationship with the whole family of the child with disabilities. It is noteworthy that some parents thought that mental health professionals should greet them if they meet somewhere in public as a sign of respect and professional commitment. Many mental health professio‐ nals recognized the importance of commitment and argued that they often have to deal with parents who do not want to be involved with the therapeutic process or get in‐ volved in decision-making regarding their child. However, this should not stop them

**c.** equity: mental health professionals must make conscious efforts to empower the fami‐ lies that they work with, recognizing the importance of parental knowledge instead of devaluing it. Parents should be encouraged to express their opinions and to be fully en‐ gaged in decision-making in the context of a constructive exchange of ideas. Attention is needed to keep the very thin line between empowering the parents and giving them

**d.** skills: parents tend to admire the mental health professionals who make the difference by offering practical help both to them and to their children with disabilities and who

too much independence that could jeopardize the therapeutic process.

parents that can form the basis of a trusting relationship.

from making the effort to work closely with the parents.

and mental health professionals [11, 99].

530 Recent Advances in Autism Spectrum Disorders - Volume I

in the chapter [104]. These factors are:


It is interesting to note that parents and mental health professionals seem to agree on what they think constitutes a desirable and proper cooperative relationship. They may differ in the importance that they place on each factor and in whether they identify it as essential or not for the success of the cooperation. Both sides recognize that for a cooper‐ ative relationship to work, both parents and mental health professionals should do their best keeping in mind the interests of the child with disabilities. This study [104] empha‐ sizes that it is imperative to conduct further research to create guidelines to delineate the relationship between parents and mental health professionals, rendering it thus more sat‐ isfactory and more effective. This is the aim of the present study that aspires through the use of a partnership protocol to delineate the relationship between parents of children with autism spectrum disorders and mental health professionals – a need that was iden‐ tified also by other researchers [16, 105].

Because of the heterogeneity of the symptoms and characteristics of autism spectrum disor‐ ders, the diagnosis usually does not provide useful suggestions for the appropriate treat‐ ment [106]. Successful therapeutic interventions develop when parents and mental health professionals work together as a coordinated and cooperative team [107]. In order to deal with the needs of children with autism spectrum disorders and their families the program COMPASS was created [54], which aims at the cooperation between staff and parents to de‐ sign the most appropriate therapeutic intervention for each child. The greatest challenge that mental health professionals who work with the families of children with autism spec‐ trum disorders have to face is to ensure that these children attend the therapeutic interven‐ tions that best suit their unique and complicated needs [108]. Parental attitudes and parental satisfaction are widely used as indications of the success of early intervention programs [109]. Since parents are the ones caring for their children with autism spectrum disorders, their views should be seriously taken into consideration by mental health professionals. Pa‐ rental concerns and preferences can be used to improve offered services, while parental sat‐ isfaction can be translated into a measure of success of a therapeutic intervention [110].

the final diagnosis [126]. Usually, mental health professionals try to bridge the gap between their views and parental views by modifying the diagnostic label, so as to comply with pa‐

Collaboration Between Parents of Children with Autism Spectrum Disorders and Mental Health Professionals

http://dx.doi.org/10.5772/53966

533

Parental satisfaction is an important element for the evaluation of the services that are of‐ fered to children with disabilities and their families [128] and can be related to other family variables, such as stress or depression [129], increased empowerment [130] or increased school involvement [131]. Some qualitative studies have shown that parents who are not sat‐ isfied with their relationship with mental health professionals experience stress and do not feel welcome in the decision-making process regarding their children [59]. There are also some documented cases of parents who were so unsatisfied with the early intervention pro‐ grams their children attended that they removed them from the program [132]. On the other hand, there are many qualitative studies of families that come from different cultural back‐ grounds and report that parents who are satisfied with the services provided to their chil‐

Research on parental satisfaction asks parents to evaluate the quantity or the quality of the services that their children receive, as well as the nature of their relationship with mental health professionals [128, 131]. However, there is still a basic gap in identifying a widely ac‐ cepted definition of parental satisfaction and which intervention model can be implemented to increase this satisfaction [77]. In a survey of satisfaction among 290 parents of children with autism spectrum disorders [134], it was found that most individualized educational plans were not developed in cooperation with mental health professionals, they did not re‐ flect the views and the concerns of the family and they were not successfully coordinated by the many different people who run the services. In another similar study [108] it was report‐ ed that most of the 539 parents had difficulty finding about the available services and ac‐ cessing them. They also claimed that they were not given any choice, that they had to fight for what they wanted and that ultimately the received services differed greatly from what they had originally asked for. Finally, more than half of the parents who participated in an‐ other study [135] complained that they were not fully informed about the available services or the structural changes that were taking place in different agencies and that they were un‐ happy with their cooperation with mental health professionals. All these problems seem to be even more prominent for the families of children with autism spectrum disorders who have to interact with various mental health professionals, such as pediatricians, psycholo‐

The concept of boundaries is inherent in human relations and cooperation and represents the rules and limitations that can create a sense of safety [137]. In strictly professional rela‐ tionships the involved parties have a clearly defined role that they hesitate to deviate from. However, in many mental health services professionals may fulfill various practical, infor‐ mative, and emotional needs of the individuals who use these services and their families [105]. Despite the fact that the codes of ethics of different professional bodies offer guide‐ lines for the behaviors that protect mental health professionals against extreme cases of con‐

rental wishes and to balance the levels of optimism and pessimism [125].

dren tend to engage more in their training [133].

gists, speech therapists and many others [136].

**1.9. The present study**

The interaction between parents of children with autism spectrum disorders and mental health professionals is crucial in special needs education because of the high incidence of au‐ tism spectrum disorders in the school population and the lack of resources [111-112]. How‐ ever, this interaction is often fragmentary and characterized by confusion, disappointment, and tension that result to low levels of cooperation and decreased quality of service provi‐ sion to the child with autism spectrum disorders [111].

The relationship between parents of children with autism spectrum disorders and teachers is also worth exploring [113-114], especially given that many children with autism spectrum disorders have communication deficits and cannot express themselves and their needs [115-116]. Research so far suggests that trust is built almost exclusively on personal interac‐ tions, encounters, and exchanges. Every encounter between parents and teachers turns into an opportunity to expand and to strengthen the bonds of trust between the interested par‐ ties. Of course, if parents suspect that teachers are not worthy of their trust, then the bonds that are created are very fragile. Many parents seek to create a strong bond with their child's teachers, because they believe that this will benefit their child [11, 117]. In order to build up their trust, both parents and teachers should state clearly and openly their expectations from this relationship in an effort to minimize misunderstandings [118].

Mental health professionals often have to announce bad news to parents regarding their child's diagnosis and prognosis, which cause drastic and often negative changes in their lives [119-120]. Since parents have the unquestionable right to know the truth about their child's condition, the question is not whether the mental health professionals will share the news but how they will do it [120]. Many mental health professionals have been criticized for the abrupt way in which they communicate upsetting news to the parents [46] and the detrimental effects this can have on the parents is a matter of great concern [121]. However, if the briefing is done properly, then this can be extremely useful for them, since they will be able to understand their child's needs and design the appropriate treatment plan [122].

Despite the significant increase in knowledge about the causes and course of autism spec‐ trum disorders [123] and the appreciation of the importance or early diagnosis [124], there have been no noteworthy changes in the information that parents receive in their first con‐ tact with mental health professionals. Some studies [125-126] have looked at the interaction between parents and mental health professionals during the dissemination of the assess‐ ment conclusions. It was found that mental health professionals are aware of the dilemma of delivering upsetting news and seek the active participation of the parents in a joint articula‐ tion of the problem. Some mental health professionals ask parents first to express their opin‐ ions about their child's problems and then they share the diagnosis to corroborate the parents' perspective [127]. Other mental health professionals present a series of related gen‐ eral and specific symptoms that lead to a specific diagnosis and then allow parents to state the final diagnosis [126]. Usually, mental health professionals try to bridge the gap between their views and parental views by modifying the diagnostic label, so as to comply with pa‐ rental wishes and to balance the levels of optimism and pessimism [125].

Parental satisfaction is an important element for the evaluation of the services that are of‐ fered to children with disabilities and their families [128] and can be related to other family variables, such as stress or depression [129], increased empowerment [130] or increased school involvement [131]. Some qualitative studies have shown that parents who are not sat‐ isfied with their relationship with mental health professionals experience stress and do not feel welcome in the decision-making process regarding their children [59]. There are also some documented cases of parents who were so unsatisfied with the early intervention pro‐ grams their children attended that they removed them from the program [132]. On the other hand, there are many qualitative studies of families that come from different cultural back‐ grounds and report that parents who are satisfied with the services provided to their chil‐ dren tend to engage more in their training [133].

Research on parental satisfaction asks parents to evaluate the quantity or the quality of the services that their children receive, as well as the nature of their relationship with mental health professionals [128, 131]. However, there is still a basic gap in identifying a widely ac‐ cepted definition of parental satisfaction and which intervention model can be implemented to increase this satisfaction [77]. In a survey of satisfaction among 290 parents of children with autism spectrum disorders [134], it was found that most individualized educational plans were not developed in cooperation with mental health professionals, they did not re‐ flect the views and the concerns of the family and they were not successfully coordinated by the many different people who run the services. In another similar study [108] it was report‐ ed that most of the 539 parents had difficulty finding about the available services and ac‐ cessing them. They also claimed that they were not given any choice, that they had to fight for what they wanted and that ultimately the received services differed greatly from what they had originally asked for. Finally, more than half of the parents who participated in an‐ other study [135] complained that they were not fully informed about the available services or the structural changes that were taking place in different agencies and that they were un‐ happy with their cooperation with mental health professionals. All these problems seem to be even more prominent for the families of children with autism spectrum disorders who have to interact with various mental health professionals, such as pediatricians, psycholo‐ gists, speech therapists and many others [136].

#### **1.9. The present study**

satisfaction are widely used as indications of the success of early intervention programs [109]. Since parents are the ones caring for their children with autism spectrum disorders, their views should be seriously taken into consideration by mental health professionals. Pa‐ rental concerns and preferences can be used to improve offered services, while parental sat‐ isfaction can be translated into a measure of success of a therapeutic intervention [110].

The interaction between parents of children with autism spectrum disorders and mental health professionals is crucial in special needs education because of the high incidence of au‐ tism spectrum disorders in the school population and the lack of resources [111-112]. How‐ ever, this interaction is often fragmentary and characterized by confusion, disappointment, and tension that result to low levels of cooperation and decreased quality of service provi‐

The relationship between parents of children with autism spectrum disorders and teachers is also worth exploring [113-114], especially given that many children with autism spectrum disorders have communication deficits and cannot express themselves and their needs [115-116]. Research so far suggests that trust is built almost exclusively on personal interac‐ tions, encounters, and exchanges. Every encounter between parents and teachers turns into an opportunity to expand and to strengthen the bonds of trust between the interested par‐ ties. Of course, if parents suspect that teachers are not worthy of their trust, then the bonds that are created are very fragile. Many parents seek to create a strong bond with their child's teachers, because they believe that this will benefit their child [11, 117]. In order to build up their trust, both parents and teachers should state clearly and openly their expectations from

Mental health professionals often have to announce bad news to parents regarding their child's diagnosis and prognosis, which cause drastic and often negative changes in their lives [119-120]. Since parents have the unquestionable right to know the truth about their child's condition, the question is not whether the mental health professionals will share the news but how they will do it [120]. Many mental health professionals have been criticized for the abrupt way in which they communicate upsetting news to the parents [46] and the detrimental effects this can have on the parents is a matter of great concern [121]. However, if the briefing is done properly, then this can be extremely useful for them, since they will be able to understand their child's needs and design the appropriate treatment plan [122].

Despite the significant increase in knowledge about the causes and course of autism spec‐ trum disorders [123] and the appreciation of the importance or early diagnosis [124], there have been no noteworthy changes in the information that parents receive in their first con‐ tact with mental health professionals. Some studies [125-126] have looked at the interaction between parents and mental health professionals during the dissemination of the assess‐ ment conclusions. It was found that mental health professionals are aware of the dilemma of delivering upsetting news and seek the active participation of the parents in a joint articula‐ tion of the problem. Some mental health professionals ask parents first to express their opin‐ ions about their child's problems and then they share the diagnosis to corroborate the parents' perspective [127]. Other mental health professionals present a series of related gen‐ eral and specific symptoms that lead to a specific diagnosis and then allow parents to state

sion to the child with autism spectrum disorders [111].

532 Recent Advances in Autism Spectrum Disorders - Volume I

this relationship in an effort to minimize misunderstandings [118].

The concept of boundaries is inherent in human relations and cooperation and represents the rules and limitations that can create a sense of safety [137]. In strictly professional rela‐ tionships the involved parties have a clearly defined role that they hesitate to deviate from. However, in many mental health services professionals may fulfill various practical, infor‐ mative, and emotional needs of the individuals who use these services and their families [105]. Despite the fact that the codes of ethics of different professional bodies offer guide‐ lines for the behaviors that protect mental health professionals against extreme cases of con‐ flict of interest or client exploitation for own purposes, there are no guidelines for the delineation of daily interactions between mental health professionals and service users [138]. The code of ethics in special needs education does not address sufficiently the boundaries in relationships between mental health professionals and parents of children with disabilities [105] and this can hinder the establishment of a cooperative relationship between them [11]. So, it is imperative to create a form for the negotiation of the boundaries in daily interactions between parents and mental health professionals in order to make decisions about how, when and why the involved parties will interact [105]. This is how the partnership protocol that will be presented in this chapter was created on the basis of the codes of ethics of the British Psychological Society [139], the American Psychological Association [140], and the Health and Care Practitioners Council [141]. The aim of this study was to explore whether this partnership protocol could change the perceptions of parents of children with autism spectrum disorders and mental health professionals about their relationship. More specifi‐ cally, it was hypothesized that parents of children with autism spectrum disorders would hold more positive attitudes about mental health professionals after the implementation of the partnership protocol. Mental health professionals would also express more positive atti‐ tudes towards the parents of autism spectrum disorders after the implementation of the partnership protocol.

**2.2. Measures**

professionals.

*2.2.2. Parent measures*

their relationship with mental health professionals.

changed in their relationship with mental health professionals.

*2.2.1. Partnership protocol*

The partnership protocol (please see Appendix) is a document that aims to delineate the re‐ lationship between mental health professionals and the parents of children with autism spectrum disorders. It defines partnership as a «functional relationship characterized by a common goal, mutual respect and desire for negotiation». The protocol is two pages long in order to be handy and to offer condensed information in the 11 following areas: 1) coopera‐ tion between parents and professionals, 2) negotiation of boundaries in parent-professional relationship, 3) parental expectations/feelings/needs, 4) parental accuracy and reporting of knowledge, 5) parental understanding of their child's condition, 6) parental participation in decision-making, 7) parents as therapists, 8) parental briefing, 9) disclosure of information to parents or third parties, 10) family discord and 11) negotiation of parent-professional disa‐ greement. The partnership protocol was piloted with five parents and seven mental health

Collaboration Between Parents of Children with Autism Spectrum Disorders and Mental Health Professionals

http://dx.doi.org/10.5772/53966

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The parents completed a brief questionnaire at baseline, which included the following infor‐ mation: gender, age, educational level, profession, number of children, age of child with au‐ tism spectrum disorders, gender of child with autism spectrum disorders, age of diagnosis of child with autism spectrum disorders, agency of diagnosis of the child with autism spec‐ trum disorders, years of cooperation with mental health professionals, weekly contact fre‐ quency with mental health professionals and number of mental health professionals with whom they have cooperated so far. Then, parents were asked to define the relationship be‐ tween parents and mental health professionals; to specify what they expect from coopera‐ tive mental health professionals; to mention the problems that they face from uncooperative mental health professionals; to describe what they do in case of disagreement with mental health professionals; to define negotiation and to judge if it is necessary for a successful ther‐ apeutic relationship; and to document the three advantages and the three disadvantages of

Parents were asked after the intervention to state whether the protocol was useful or not jus‐ tifying their answers; whether any points needed further clarification; which were the most important points of the protocol; how often they used it; if it helped them define the nature of the relationship that they had with the mental health professionals; what happened in case of disagreement with mental health professionals; whether the protocol helped them re‐ solve any disagreement with mental health professionals; and whether anything had

In order to measure parental views about mental health professionals, the *Helping Behavior Checklist – (CBCL)* [142] was used, since it was based on the codes of ethics of six internation‐ al organizations of mental health professionals. The first part, which was used in this study, consists of 16 statements that parents have to rate on a 4-point scale (where 1 = almost al‐ ways true and 4 = almost never true), such as «the mental health professional clearly ex‐
