**Appendix**

#### **Parent-Professional Partnership Protocol**

When professionals and parents of children with autism come together for the first time, they bring with them their own worries, concerns, priorities, and responsibilities, which must be woven together into a relationship that could be characterized as a partnership. The roles of the parent and the professional impose certain rights and duties, obligations and an‐ ticipated behaviours, as well as expectations. It is extremely difficult to define the exact na‐ ture of this partnership, since every parent and every family has its own idiosyncrasies and each professional possesses unique characteristics and ways of working and relating. The aim of the present document is to provide some guidelines that could be adopted and im‐ plemented by both interested parties in an attempt to define their partnership and it is based on the principles of the negotiating model. The negotiating model defines partnership as "a working relationship that is characterized by a shared sense of purpose, mutual respect and the willingness to negotiate".

worries they might have. If parents believe that they are not being listened to, they should make sure that the attitude of the professional changes. Professionals must not focus on the child alone, but they should advise parents on how to care for their child with autism. Even if parents have other children, they may need some practical assistance and tips on how to overcome some of the issues that arise due to the difficulties faced by their child. It is the parents' responsibility to inform professionals on the areas where they believe they need

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Professionals should allow parents to be more involved in activities and decisions regarding the education and care of their child. For example, professionals should not make drastic changes in the treatment that they follow before consulting with the parents. This is a good way to ensure cooperation and to minimise conflicts in parent-professional relationship. Pa‐ rents will be able to make an informed choice regarding the future of their own child. There‐ fore, a common purpose or shared concern or mutual interest should be established in order for the relationship between the interested parties to be productive. Both parents and profes‐ sionals should be involved in brainstorming regarding potential ideas, plans, or actions that could enhance the development of the child. Parents should make an effort to follow and understand the progress of their child in order to be able to make a decision. This could in‐ clude reading books, notes, or reports regarding the condition of their child and the treat‐

Professionals may train parents to use some behavioral techniques that will allow them to teach their child, complementing thus and supporting the work of professionals. If parents feel confident enough, they may want to assume an active role in furthering their child's learning. However, professionals should be aware that parents may not have enough time to be actively involved in the education of their child if they have a full-time job or other children to look after. Therefore, at the beginning of the partnership professionals and pa‐ rents should reach an agreement on the amount of time that parents can spend with their child on a weekly basis. Professionals should encourage each member of the family to con‐ tribute to the treatment of the child with autism, which may need special assistance to par‐ ticipate in family outings and activities. This can be achieved by encouraging parents to

Professionals should inform parents from the beginning about the cost of the treatment, seek their consent when contemplating the acquisition of new material, and brief them about the progress of their child, even if the news are not particularly encouraging or reassuring. It would be a good idea for professionals to keep notes of the meeting with the parents, so that

communicate with each other and express openly their concerns and needs.

they can refer to them in the future and keep track of the progress of their child.

**Disclosure of information to parents or third parties**

more help and support.

ment that is implemented.

**Parents as therapists**

**Parental briefing**

**Parental participation in decision-making**

#### **Cooperation between parents and professionals**

Professionals need parental cooperation in order to be able to do their job effectively. Pa‐ rents should recognize that professionals have specialist knowledge and abilities, but they cannot substitute the role of the caregiver. Since both parents and professionals are interest‐ ed in the child's progress, they need to cooperate to achieve the best results.

#### **Negotiation of boundaries in parent-professional relationship**

Parents and professionals should clarify and negotiate the nature and the limits of their part‐ nership. It would be advisable to make a contract that is not formal or legally binding. It just sets out mutual expectations and intended behaviours. Depending on the situation it may be appropriate to put this in writing and each party should retain their own copy. It is advisa‐ ble to repeat this process at later stages according to the progress of the child. Parents should refrain from contacting the professional on a regular basis about things that do not concern the child with autism and professionals should be punctual and fulfil their obliga‐ tions towards the family and the child.

#### **Parental expectations/feelings/needs**

Professionals should identify and evaluate the needs of the family, which cannot be separat‐ ed from the needs of the child. The child has a relationship with all the other family mem‐ bers and the relationships within the family have an interactive effect with each other. Parents should verbalise and express their urging needs to professionals so that a solution can be sought. These expectations, feelings, and needs should be incorporated into the treat‐ ment when the professional believes that is plausible and suitable.

#### **Parental accuracy and reporting of knowledge**

Parents possess a unique and special knowledge and understanding about their child that is valuable for the design of a better intervention. The home is the best available place to con‐ solidate the knowledge that the child acquires and it can also offer multiple opportunities for learning. Parents should be honest with professionals and try to overcome the difficulty they may experience to talk publicly about the condition and the difficulties of their child. If the professional is misled or told half the truth, it is very likely that the suggested treatment will not be the appropriate one.

#### **Parental understanding of their child's condition**

Professionals should use simple language when talking to parents, since they do not have expert knowledge that allows them to familiarise themselves with terms used among profes‐ sionals. Parents should also express their queries and seek to clarify any misconceptions or worries they might have. If parents believe that they are not being listened to, they should make sure that the attitude of the professional changes. Professionals must not focus on the child alone, but they should advise parents on how to care for their child with autism. Even if parents have other children, they may need some practical assistance and tips on how to overcome some of the issues that arise due to the difficulties faced by their child. It is the parents' responsibility to inform professionals on the areas where they believe they need more help and support.

#### **Parental participation in decision-making**

Professionals should allow parents to be more involved in activities and decisions regarding the education and care of their child. For example, professionals should not make drastic changes in the treatment that they follow before consulting with the parents. This is a good way to ensure cooperation and to minimise conflicts in parent-professional relationship. Pa‐ rents will be able to make an informed choice regarding the future of their own child. There‐ fore, a common purpose or shared concern or mutual interest should be established in order for the relationship between the interested parties to be productive. Both parents and profes‐ sionals should be involved in brainstorming regarding potential ideas, plans, or actions that could enhance the development of the child. Parents should make an effort to follow and understand the progress of their child in order to be able to make a decision. This could in‐ clude reading books, notes, or reports regarding the condition of their child and the treat‐ ment that is implemented.

#### **Parents as therapists**

each professional possesses unique characteristics and ways of working and relating. The aim of the present document is to provide some guidelines that could be adopted and im‐ plemented by both interested parties in an attempt to define their partnership and it is based on the principles of the negotiating model. The negotiating model defines partnership as "a working relationship that is characterized by a shared sense of purpose, mutual respect and

Professionals need parental cooperation in order to be able to do their job effectively. Pa‐ rents should recognize that professionals have specialist knowledge and abilities, but they cannot substitute the role of the caregiver. Since both parents and professionals are interest‐

Parents and professionals should clarify and negotiate the nature and the limits of their part‐ nership. It would be advisable to make a contract that is not formal or legally binding. It just sets out mutual expectations and intended behaviours. Depending on the situation it may be appropriate to put this in writing and each party should retain their own copy. It is advisa‐ ble to repeat this process at later stages according to the progress of the child. Parents should refrain from contacting the professional on a regular basis about things that do not concern the child with autism and professionals should be punctual and fulfil their obliga‐

Professionals should identify and evaluate the needs of the family, which cannot be separat‐ ed from the needs of the child. The child has a relationship with all the other family mem‐ bers and the relationships within the family have an interactive effect with each other. Parents should verbalise and express their urging needs to professionals so that a solution can be sought. These expectations, feelings, and needs should be incorporated into the treat‐

Parents possess a unique and special knowledge and understanding about their child that is valuable for the design of a better intervention. The home is the best available place to con‐ solidate the knowledge that the child acquires and it can also offer multiple opportunities for learning. Parents should be honest with professionals and try to overcome the difficulty they may experience to talk publicly about the condition and the difficulties of their child. If the professional is misled or told half the truth, it is very likely that the suggested treatment

Professionals should use simple language when talking to parents, since they do not have expert knowledge that allows them to familiarise themselves with terms used among profes‐ sionals. Parents should also express their queries and seek to clarify any misconceptions or

ed in the child's progress, they need to cooperate to achieve the best results.

**Negotiation of boundaries in parent-professional relationship**

ment when the professional believes that is plausible and suitable.

the willingness to negotiate".

**Cooperation between parents and professionals**

550 Recent Advances in Autism Spectrum Disorders - Volume I

tions towards the family and the child. **Parental expectations/feelings/needs**

**Parental accuracy and reporting of knowledge**

**Parental understanding of their child's condition**

will not be the appropriate one.

Professionals may train parents to use some behavioral techniques that will allow them to teach their child, complementing thus and supporting the work of professionals. If parents feel confident enough, they may want to assume an active role in furthering their child's learning. However, professionals should be aware that parents may not have enough time to be actively involved in the education of their child if they have a full-time job or other children to look after. Therefore, at the beginning of the partnership professionals and pa‐ rents should reach an agreement on the amount of time that parents can spend with their child on a weekly basis. Professionals should encourage each member of the family to con‐ tribute to the treatment of the child with autism, which may need special assistance to par‐ ticipate in family outings and activities. This can be achieved by encouraging parents to communicate with each other and express openly their concerns and needs.

#### **Parental briefing**

Professionals should inform parents from the beginning about the cost of the treatment, seek their consent when contemplating the acquisition of new material, and brief them about the progress of their child, even if the news are not particularly encouraging or reassuring. It would be a good idea for professionals to keep notes of the meeting with the parents, so that they can refer to them in the future and keep track of the progress of their child.

#### **Disclosure of information to parents or third parties**

Professionals could verbally inform parents about the progress of their child but access to records may be prohibited due to legal issues related to their confidentiality – professionals are called to make individual decisions according to each situation. Parents who advocate their right to have access to the records should be equally responsible in their own record keeping. Professionals should inform parents of any other professionals with whom they discuss the case of their child and elicit their consent before doing so.

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#### **Family discord**

In case of disagreement between the parents regarding the treatment of their child, profes‐ sionals should stay neutral and avoid making alliances with one parent or colluding consis‐ tently with one parent's preferences. If professionals believe that there are many pressing issues among the family members, they should encourage them to see a counsellor. Parents should realize that professionals working with their child may not have the necessary knowledge and training to deal with these issues.

#### **Negotiation of parent-professional disagreement**

When a disagreement arises, both parents and professionals should try to resolve it. They must express their opinions and feelings openly, keeping in mind that they have the child's best interest in mind. If it is impossible to resolve the disagreement, it might be advisable to discontinue the partnership.
