Supporting and guiding families after an autism diagnosis
In mental health disorders in the child and adolescent population, there is a more or less direct interrelationship between environmental factors, socio-family factors, and the characteristics of the diagnosis and its prognosis.
That's why it's important to work not only on the interpersonal skills and abilities of the person receiving care, but also on those of their family, as the primary caregiver and socializer, and those of their community. In fact, the dynamics of the family system directly influence the behavior of its members ; therefore, we can say that there is a direct impact on the prognosis of the diagnosed disorder. It is necessary, then, to focus on the environment, the family, and the community if we want to achieve a better prognosis. This area of intervention is the domain of social work.
Social intervention encompasses an approach to the main environmental factors (family dynamics and composition, school situation, socioeconomic situation), as well as other more specific factors such as the support network, acceptance of the diagnosis and its treatment, or the possible adaptations required for daily life activities, among others.
Objectives of social intervention
In general, there are some generic objectives, which are usually the basis of socio-family intervention in families of children diagnosed with ASD, which are:
- To provide emotional support.
- To generate and promote an optimal level of well-being.
- To provide guidance and advice on administrative processes, benefits, community resources and associations.
To provide emotional support
Any mental health diagnosis can have a greater or lesser impact on the family system, forcing it to adapt to the new situation for its own survival. This primarily manifests as doubt, uncertainty, unmet expectations, feelings of guilt, and changes in some family roles.
In the case of children or adolescents who have been diagnosed with disorders that involve chronicity, such as autism , obviously the impact is greater and, therefore, all the variables mentioned above are intensified.
For this reason, it is essential to support the family in this process, both at the beginning (impact of the diagnosis) and in its subsequent follow-up, as well as at the time of the transition to adult life.
To generate and promote an optimal level of well-being
The main objective is to create the healthiest possible family environment to provide the best possible care. A good way to improve the well-being of people diagnosed with ASD is not only to treat them directly but also to support those around them.
In a difficult situation, the social worker not only focuses on identifying variables that may be having a negative impact (risk factors), whether at the individual level, in the immediate environment (family, school) or in the surrounding environment, but also carries out an exploration to uncover all the possibilities that can contribute to an improvement in the situation (protective factors).
It is important to work not only on the relational skills and abilities of the person being cared for, but also those of their family and their environment.
How do you achieve such a broad and ambitious goal?
- Focusing on stress reduction , deactivating those elements that may be negatively influencing the care of the affected person by the family, such as: other illnesses, economic difficulties, lack of relational and support, cultural barriers, lack of coverage of basic needs, etc.
- Promoting new forms of organization and dynamics more suited to the moment.
- Identifying and enhancing the personal skills and resources of family members so that they can resolve situations of conflict or underlying discomfort that have arisen with the onset of the disorder.
- Paying special attention to the main caregiver , creating dedicated spaces for guidance and support to prevent burnout and overwhelm.
To guide and advise
Following acceptance of the diagnosis, it is necessary to provide information, guidance, and follow-up regarding all administrative processes, benefits, and community resources from which the affected person and their family can benefit . This primarily involves alternative educational needs, home-based support, and specialized resources.
It is very important that the family is aware of all these resources so they can choose the ones best suited to their child's needs and their family dynamics. If the chosen options are appropriate, they will become an invaluable support in the development and care of the person receiving assistance in daily life, as well as a respite for the family, and will help prevent situations of overwhelm and family burnout.
If the family is aware of all the resources and benefits they can request, they will be able to choose the ones that best suit their child's needs and their family dynamics.
It is important to note that, in most cases, the goal is not to obtain all available resources, as this could lead to an excess of contradictory instructions, as well as overreaction. This tendency is very common, as well as understandable, since wanting the best for the person can easily be confused with the fact that they are assisted as often as possible and have the greatest number of resources available to them.
Therefore, it is the social work team's responsibility to inform and guide them in this regard to avoid confusion, false expectations, and potential frustrations. The social worker, who is familiar with the family's needs and the prognosis and needs of the individual being cared for, should coordinate with the referring clinical care team and other services involved to assess the best options. Subsequently, it is advisable to update the information regarding the chosen resources to communicate it to the family as accurately as possible and, if necessary, facilitate their involvement.
If you have to take care of your child, you can request a paid reduction in working hours.
How is social intervention put into practice?
The definition of interdisciplinarity implies cooperation, dialogue, and interaction when faced with a common and complex problem, with the aim of addressing it through shared objectives. To this end, each discipline approaches and evaluates the problem using its specific methodologies, but then a joint intervention plan and support mechanism are defined .
In an interdisciplinary team, the person being addressed is understood not as an isolated unit but as a whole in which different variables converge, in continuous relation with their environment.
Beyond the various existing techniques and methodologies, we must not forget that a significant part of social intervention is based on the relationship and connection established with people. Obviously, there is no relationship without knowledge and dialogue. Hence, the importance of knowing how to observe, listen, and communicate .
Notice
Not all information comes from what different family members say, nor from information gathered through coordination between the various services that assist them. By actively observing their body language, tone of voice, and facial expressions in relation to the context and the person they are addressing, we can gain insight into their priorities, the types of relationships they establish, and an understanding of the dynamics within and outside the family.
It is essential to know the family members who live together in the household ; only in this way can the relational dynamics be understood and those points where social intervention is necessary be identified.
Hear
On countless occasions, we hear stories, phrases, reasoning, and explanations that, in our view, are incompatible with our own values or with socially established norms. At this point, it is crucial not to prejudge or presuppose, and at the same time, to practice empathy and contextualization . Only in this way can we truly understand the content of what is being conveyed. Obviously, we are not talking about situations that constitute a crime or a violation of the law.
On the other hand, it is very important to highlight the transformative, almost therapeutic, capacity experienced by people who feel "truly heard." A good part of this is due to the feeling of understanding (not necessarily acceptance) generated on the part of the listener.
Putting words and order to one's experiences is therapeutic in itself, as it allows for a true awareness of one's own story, helps identify difficulties, and therefore makes it easier to find solutions. It is essential to encourage the expression of emotions and facilitate reflection.
Communicate
How we say things is just as important as what we say. Most of us have surely had experiences where we've had to deliver bad news, and its impact has been lessened by presenting the issue with complete transparency and honesty, respect, understanding, and a genuine desire to help and resolve the situation, conveying confidence at all times.
In many cases, prior knowledge of the family system as a whole will allow the content of what is to be conveyed to be adapted.
It's also important to know how to pace the information . It's not advisable to give all the information we have if we see that the family isn't in a position to receive it at that moment; otherwise, it can cause more anxiety and confusion.
Much of social intervention is based on the relationship and connection established with people. Hence, the importance of knowing how to observe, listen, and communicate.
Social intervention in the transition process to adulthood
Social intervention is not limited to the period of treatment and hospital follow-up, nor does it abruptly end when the person reaches adulthood. A turning point in social intervention occurs precisely during the transition to adulthood . This is a very complex stage in which some significant changes often take place.
Reaching adulthood marks a turning point and the entry into a new phase where different aspects of life are reshaped. This can trigger a developmental crisis for anyone, meaning a change in circumstances that requires a period of adjustment for both the individual and their family.
From a health perspective, this implies a different model of care for the disorder, as well as for the social determinants. These are defined by the World Health Organization (WHO) as "the circumstances in which people are born, grow up, live, work, and age, including the health system ." In the case of people diagnosed with ASD, this means, among other things, the transition to an adult mental health network .
The various studies related to the transition agree on the need to address not only clinical aspects, but also social , educational and emotional aspects throughout the process .
And at 18, what then?
Key points of intervention in the transition process:
- Awareness. In most cases, the transition to adulthood highlights the chronic nature of the diagnosis and the need for more or less regular support and treatment. For many individuals and their families, this represents a turning point in their life plans, involving both practical and emotional aspects.
- Guidance/advice . Regarding all the resources and administrative processes needed to ensure comprehensive support for diverse needs. It is important to consider all personal aspects: therapeutic, educational, employment, housing (whether private or residential), financial, and legal.
- Linking/Referral. A basic premise is understanding the individual's needs and preferences to assess the appropriate resources. To ensure a successful transition, it is essential to contact the resource beforehand to confirm its suitability for the individual and to understand the necessary access procedures. To complete the referral process, it is necessary to conduct supervision during the initial integration into the new service to address any questions (primarily arising from the differences in care between child and adult settings) and to support the individual's adjustment to this new support resource.
- Support. The transition process is more than just a change of resources; it involves a journey from childhood and adolescence to adulthood. As such, it is natural for many doubts, difficulties, and resistance to change to arise. In this sense, technical and emotional support, both for the individual and the family, is essential for the transition process to unfold as naturally as possible and, therefore, not be experienced as a traumatic situation.
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