**2. Methods**

#### **2.1. Participants**

The participants of this study were 40 mental health professionals working in the private sector with children with autism spectrum disorders and their families (18 men and 22 women): 5 psychiatrists, 10 speech therapists, 12 occupational therapists, 7 psychologists and 6 special ed‐ ucators. Their age ranged from 26 to 55 years old (mean age = 42 years and 2 months) and they have been working with children with disabilities from 3 to 30 years (mean years of professio‐ nal experience = 17 years). The mean time that they have been working therapeutically with a child with autism spectrum disorders was 2 hours per week. Forty mothers and fathers of chil‐ dren with autism spectrum disorders from Northern Greece also took part in the study. There were 33 mothers and 7 fathers, aged 29 to 42 years old (mean age = 34 years and 7 months). Ten mothers were housewives, 17 were private employees, 9 were public employees, and 4 were self-employed. One quarter of the parents had one child, 24 had two children and 6 had three children. Most parents lived with their spouses, while 4 mothers were divorced and raised their children alone. All the parents had a child diagnosed with autism spectrum disorders from a public child psychiatric or child developmental clinic. The mean age of their child's di‐ agnosis was 4 years and 8 months. Out of the 40 children with autism spectrum disorders there were 7 girls and 33 boys and their age ranged from 3.5 to 14 years old. Ten children attended special schools, 22 attended inclusion classes and the remaining 8 were in mainstream schools. The parents were in contact with more than 5 mental health professionals from the time they started seeking for a diagnosis and visited someone to help their children with autism spec‐ trum disorders for an average of 5 years and 3.5 hours per week.

#### **2.2. Measures**

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

The participants of this study were 40 mental health professionals working in the private sector with children with autism spectrum disorders and their families (18 men and 22 women): 5 psychiatrists, 10 speech therapists, 12 occupational therapists, 7 psychologists and 6 special ed‐ ucators. Their age ranged from 26 to 55 years old (mean age = 42 years and 2 months) and they have been working with children with disabilities from 3 to 30 years (mean years of professio‐ nal experience = 17 years). The mean time that they have been working therapeutically with a child with autism spectrum disorders was 2 hours per week. Forty mothers and fathers of chil‐ dren with autism spectrum disorders from Northern Greece also took part in the study. There were 33 mothers and 7 fathers, aged 29 to 42 years old (mean age = 34 years and 7 months). Ten mothers were housewives, 17 were private employees, 9 were public employees, and 4 were self-employed. One quarter of the parents had one child, 24 had two children and 6 had three children. Most parents lived with their spouses, while 4 mothers were divorced and raised their children alone. All the parents had a child diagnosed with autism spectrum disorders from a public child psychiatric or child developmental clinic. The mean age of their child's di‐ agnosis was 4 years and 8 months. Out of the 40 children with autism spectrum disorders there were 7 girls and 33 boys and their age ranged from 3.5 to 14 years old. Ten children attended special schools, 22 attended inclusion classes and the remaining 8 were in mainstream schools. The parents were in contact with more than 5 mental health professionals from the time they started seeking for a diagnosis and visited someone to help their children with autism spec‐

trum disorders for an average of 5 years and 3.5 hours per week.

partnership protocol.

534 Recent Advances in Autism Spectrum Disorders - Volume I

**2. Methods**

**2.1. Participants**

#### *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 professionals.

#### *2.2.2. Parent measures*

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 their relationship with mental health professionals.

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 changed in their relationship with mental health professionals.

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‐ plained to me what I had to do to help my child», «the mental health professional did not involve me in any decision-making regarding my child's therapy» and «the mental health professional held me responsible for my child's problems». Scores are reversed in some items and the total score for the scale varies from 16 to 64. This questionnaire is highly corre‐ lated to parental satisfaction about their child's progress since they started working with the specific mental health professional. Test-retest reliability varies from 0.48 to 0.89 for a period of 2-3 weeks [142]. The Cronbach α of the scale for this study was high α = 0.89 and deemed satisfactory.

should be taken into consideration in most cases of autism»; and e) «providing guidance to parents», which consists of four statements, such as «it is not usually recommended to in‐ form parents about what they can do exactly to help their child» or «it is therapeutically ac‐ ceptable to brief parents directly about what they should do to help their child with autism». Scoring is reversed for some statements and the total score varies from 37 to 148. External validity ranges from 0.60 to 0.87 for each subscale [143] and test-retest reliability for the whole scale is 0.89 for a period of 2-3 weeks. Cronbach α for this study was very high for the

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

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

537

The researcher approached mental health professionals who were working privately with children with autism spectrum disorders in Northern Greece and briefed them about the study. She identified potential participants from the professional phone book and the lists of professional bodies in the area and then randomly pulled 100 papers with names from a container. She contacted them and 68 expressed an initial interest in the study, while 45 ended up agreeing to participate. The next step was to ask these mental health professionals to draw a list with the children with autism spectrum disorders they were working with at that time and the researcher randomly selected one family. The mental health professionals were given the task to brief the families and in case the parents expressed an interest the re‐ searcher met with them as well. There were some families who did not want to participate in the study, so another family was selected in their place until every mental health profes‐ sional was matched to a family of a child with autism spectrum disorders. The parent from each family who participated was the one who was more in charge of the child's therapy and was in more frequent and direct contact with the mental health professional. This was deemed essential in order to follow the partnership protocol and to explore its effectiveness.

Before the beginning of the intervention the researcher informed the participants that they could withdraw at any time without penalty and that all the information that they provided would be confidential. Then, she gave out the baseline questionnaires that were filled out individually in the office of the mental health professionals and in the presence of the re‐ searcher. The next step was to present the partnership protocol to the participants in detail, to go through it with them and to answer any questions they might have. The intervention started when all participants reassured the researcher that they had fully understood the content of the partnership protocol and it lasted for six months. During this time the re‐ searcher called the participants monthly to check the progress of the data collection and to ask if there were any issues that needed to be addressed. Meanwhile, five parents discontin‐ ued the intervention at different points due to time restraints (one parent), health problems (two parents), or because they stopped taking their child to the particular mental health pro‐ fessional. So, the researcher asked the corresponding mental health professionals to stop us‐ ing the protocol and the final number of participants was decreased to 40 parents of children

Data collection was completed after a series of face-to-face meetings with every participant, who was asked after the intervention to fill in the same questionnaire as in baseline and to

with autism spectrum disorders and 40 mental health professionals.

whole scale (α = 0.93) and is deemed extremely satisfactory.

**2.3. Procedure**

#### *2.2.3. Mental health professionals measures*

The mental health professionals filled in a brief questionnaire at baseline with demographic in‐ formation: age, gender, profession, years of professional experience, as well as weekly frequen‐ cy of sessions with children with autism spectrum disorders. Then they were asked to define the relationship between parents and mental health professionals and what they expect from cooperative parents; to mention the problems that they face from uncooperative parents; to state whether their cooperation with parents is necessary for successful intervention; to de‐ scribe what they do in case of disagreement with parents; to define the concept of negotiation and to judge if it is necessary for a successful therapeutic relationship; and to document the three advantages and the three disadvantages of their relationship with parents.

Mental health professionals were asked after the intervention to state whether the protocol was useful or not justifying 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 parents; what happened in case of disagreement with parents; whether the protocol helped them resolve any disagree‐ ment with parents; and whether anything had changed in their relationship with parents.

The views of mental health professionals about the parents of children with autism spec‐ trum disorders they worked with were measured using *Providers' Beliefs About Parents Ques‐ tionnaire (PBAP)* [143], which is based on some concerns that parents expressed about the attitudes or the behaviors of some mental health professionals who worked with their chil‐ dren with disabilities. It consists of 37 statements that mental health professionals have to rate on a 4-point scale (where 1 = completely disagree and 4 = completely agree). There are 5 subscales: a) «parental incrimination», which consists of nine statements, such as «the most common cause of severe emotional disorder in children is their parents' behavior» or «the most common cause of emotional problems in children is their parents' emotional inadequa‐ cy»; b) «necessity of informing parents», which consists of ten statements, such as «it is usu‐ ally advisable to offer parent unlimited access to their child's files» or «all parents must be informed on how exactly a therapy is expected to help their child»; c) «recognition of paren‐ tal status», which consists of seven statements, such as «parents of children in need of men‐ tal health services are usually emotionally involved to such an extent, that they do not accurately report their child's behavior» or «parents possess special knowledge that mental health professionals lack»; d) «attitudes towards drug use», which consists of six statements, such as «drugs usually help to deal with autism» or «the possible merit of drug therapy should be taken into consideration in most cases of autism»; and e) «providing guidance to parents», which consists of four statements, such as «it is not usually recommended to in‐ form parents about what they can do exactly to help their child» or «it is therapeutically ac‐ ceptable to brief parents directly about what they should do to help their child with autism». Scoring is reversed for some statements and the total score varies from 37 to 148. External validity ranges from 0.60 to 0.87 for each subscale [143] and test-retest reliability for the whole scale is 0.89 for a period of 2-3 weeks. Cronbach α for this study was very high for the whole scale (α = 0.93) and is deemed extremely satisfactory.

#### **2.3. Procedure**

plained to me what I had to do to help my child», «the mental health professional did not involve me in any decision-making regarding my child's therapy» and «the mental health professional held me responsible for my child's problems». Scores are reversed in some items and the total score for the scale varies from 16 to 64. This questionnaire is highly corre‐ lated to parental satisfaction about their child's progress since they started working with the specific mental health professional. Test-retest reliability varies from 0.48 to 0.89 for a period of 2-3 weeks [142]. The Cronbach α of the scale for this study was high α = 0.89 and deemed

The mental health professionals filled in a brief questionnaire at baseline with demographic in‐ formation: age, gender, profession, years of professional experience, as well as weekly frequen‐ cy of sessions with children with autism spectrum disorders. Then they were asked to define the relationship between parents and mental health professionals and what they expect from cooperative parents; to mention the problems that they face from uncooperative parents; to state whether their cooperation with parents is necessary for successful intervention; to de‐ scribe what they do in case of disagreement with parents; to define the concept of negotiation and to judge if it is necessary for a successful therapeutic relationship; and to document the

Mental health professionals were asked after the intervention to state whether the protocol was useful or not justifying 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 parents; what happened in case of disagreement with parents; whether the protocol helped them resolve any disagree‐ ment with parents; and whether anything had changed in their relationship with parents.

The views of mental health professionals about the parents of children with autism spec‐ trum disorders they worked with were measured using *Providers' Beliefs About Parents Ques‐ tionnaire (PBAP)* [143], which is based on some concerns that parents expressed about the attitudes or the behaviors of some mental health professionals who worked with their chil‐ dren with disabilities. It consists of 37 statements that mental health professionals have to rate on a 4-point scale (where 1 = completely disagree and 4 = completely agree). There are 5 subscales: a) «parental incrimination», which consists of nine statements, such as «the most common cause of severe emotional disorder in children is their parents' behavior» or «the most common cause of emotional problems in children is their parents' emotional inadequa‐ cy»; b) «necessity of informing parents», which consists of ten statements, such as «it is usu‐ ally advisable to offer parent unlimited access to their child's files» or «all parents must be informed on how exactly a therapy is expected to help their child»; c) «recognition of paren‐ tal status», which consists of seven statements, such as «parents of children in need of men‐ tal health services are usually emotionally involved to such an extent, that they do not accurately report their child's behavior» or «parents possess special knowledge that mental health professionals lack»; d) «attitudes towards drug use», which consists of six statements, such as «drugs usually help to deal with autism» or «the possible merit of drug therapy

three advantages and the three disadvantages of their relationship with parents.

satisfactory.

*2.2.3. Mental health professionals measures*

536 Recent Advances in Autism Spectrum Disorders - Volume I

The researcher approached mental health professionals who were working privately with children with autism spectrum disorders in Northern Greece and briefed them about the study. She identified potential participants from the professional phone book and the lists of professional bodies in the area and then randomly pulled 100 papers with names from a container. She contacted them and 68 expressed an initial interest in the study, while 45 ended up agreeing to participate. The next step was to ask these mental health professionals to draw a list with the children with autism spectrum disorders they were working with at that time and the researcher randomly selected one family. The mental health professionals were given the task to brief the families and in case the parents expressed an interest the re‐ searcher met with them as well. There were some families who did not want to participate in the study, so another family was selected in their place until every mental health profes‐ sional was matched to a family of a child with autism spectrum disorders. The parent from each family who participated was the one who was more in charge of the child's therapy and was in more frequent and direct contact with the mental health professional. This was deemed essential in order to follow the partnership protocol and to explore its effectiveness.

Before the beginning of the intervention the researcher informed the participants that they could withdraw at any time without penalty and that all the information that they provided would be confidential. Then, she gave out the baseline questionnaires that were filled out individually in the office of the mental health professionals and in the presence of the re‐ searcher. The next step was to present the partnership protocol to the participants in detail, to go through it with them and to answer any questions they might have. The intervention started when all participants reassured the researcher that they had fully understood the content of the partnership protocol and it lasted for six months. During this time the re‐ searcher called the participants monthly to check the progress of the data collection and to ask if there were any issues that needed to be addressed. Meanwhile, five parents discontin‐ ued the intervention at different points due to time restraints (one parent), health problems (two parents), or because they stopped taking their child to the particular mental health pro‐ fessional. So, the researcher asked the corresponding mental health professionals to stop us‐ ing the protocol and the final number of participants was decreased to 40 parents of children with autism spectrum disorders and 40 mental health professionals.

Data collection was completed after a series of face-to-face meetings with every participant, who was asked after the intervention to fill in the same questionnaire as in baseline and to answer some additional questions about the protocol. The answers of the participants in the open-ended questions were explored with thematic analysis, which led to the categories that are presented. A second rater with experience with this type of analysis looked at approxi‐ mately half of the data and the interrater reliability was extremely satisfactory (95.7%).

**N %**

539

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

**N %**

1. Encouragement about the child's progress 14 35 2. Genuine interest in the child and the family 10 25 3. Cooperation between parents and mental health professionals 7 17.5 4. Provision of practical advise to parents 5 12.5 5. Regular verbal communication with parents 3 7.5 6. Provision of support in all the areas of the child's development 1 2.5

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

**Table 1.** Advantages of Working with Mental Health Professionals According to the Parents of Children with Autism

1. Dishonesty about the child's progress 12 30 2. Lack of genuine interest in the child and the family 9 22.5 3. No understanding of parental needs 7 17.5 4. Inability to realize what is promised 5 12.5 5. Insensitivity to family's needs 4 10 6. Overcharging for the therapy 3 7.5

**Table 2.** Disadvantages of Working with Mental Health Professionals According to the Parents of Children with

rents can do if mental health professionals do not follow the protocol.

Most parents (87%) stated that the partnership protocol was useful, because it provides a clear context for the relationships between parents and mental health professionals, it de‐ fines the roles of both parties, it promotes the positive cooperation that contributes to the child's progress and it familiarizes parents with their rights. The remaining 13% claimed that the protocol is not useful because it is binding and difficult to adhere to. Some parents said that the protocol should also clarify which qualifications mental health professionals should hold in order to work with children with autism spectrum disorders and what pa‐

The most important points of the partnership protocol were: ensured cooperation, honest re‐ lationships, understanding of parental limitations, parental participation in decision-mak‐ ing, and recognition of parental needs and emotions. Parents referred to the protocol every time that something changed in their child's therapy or a problem came up, as well as in case of disagreement with mental health professionals. The changes that parents observed in their relationship with mental health professionals after the implementation of the protocol were: parents and mental health professionals cooperated more effectively (32%); mental health professionals offered psychological support to parents (25%); mental health profes‐

Spectrum Disorders

Autism Spectrum Disorders

*3.1.2. Post-intervention data*
