Support to families

From the first suspicion of a potential Autism Spectrum Disorder in an infant, families embark on a challenging journey in which they require guidance, companionship, and emotional support. Families of individuals with ASD encounter various extraordinary situations at different stages of their child’s life and must address numerous caregiving and support needs. Typically, families face ASD for the first time with little to no knowledge, and suddenly realise that this will be their new reality moving forward.

At Fundació Junts Autisme, we have collected the experiences of many of the families we’ve worked with over the years. From these, we’ve been able to assess the support needs of children and young people with ASD. We have also identified the range of difficulties families face in accessing the services and support that they and their children require.

The support we provide to families at the foundation strengthens the inherent resources of each family—both human and social (networks and community)—as key elements of intervention. We identify each family’s strengths and capabilities, using these to encourage, assist, support, and stimulate.

The primary support for a person with autism comes from their family or carers, so it is vital that the stress they experience is recognised and addressed. Unfortunately, this stress often does not receive adequate professional attention, despite numerous studies highlighting the seriousness of neglecting family well-being and the resulting consequences for the individual with autism.

Families of individuals with ASD face the following difficulties:

Lack of information, fragmented or conflicting information about the diagnosis and the interventions needed: It is very difficult to understand the disorder; what it means, what to do and what to expect. Families need reliable, consistent, coherent and effective resources. They need to be trained to increase their knowledge about the reality of autism and the needs of their children, to acquire skills and strategies.

Families have to coordinate with many professionals from different fields: These professionals often do not have in-depth knowledge of the disorder. This makes it difficult to get adequate advice, and families go from one place to another in search of an appropriate professional response. This leads to disorientation, despair and dependency.

Personal and family consequences of the diagnosis: loss of expectations of the son or daughter, uncertainty about their future, feelings of guilt, etc. All this generates feelings of anxiety, stress and incomprehension. It is very necessary to have human support, people who can accompany them through the process and at the same time open a door, a way forward.

High intensity of support needed: There is an overload for the members of the family, which makes it difficult to reconcile work and private life, in particular for the main carers. This leads to a restructuring of daily life (dynamics, logistics, economy), reduces the personal time of each person and increases the risk of social isolation.

Difficulties in accessing services and equal participation: Specialised services are needed so that children and young people with ASD can access different inclusive spaces and exercise their right to participate in leisure, mainstream school, work, sports, etc.

Families face very high economic costs: Currently, there is no public or associative resource in Catalonia that offers a comprehensive service that covers the functions of support, accompaniment, advice and guidance that families need. A service that offers opportunities for inclusion from a holistic perspective throughout the different stages of the life cycle of people with ASD. Therefore, the families have to bear the costs of these services.

The accompaniment and support provided to families of people with ASD consist of a family-based intervention that forms part of the foundation’s overall project.

It is an intervention that operates and integrates transversally across the different services offered by the organisation, with the aim of providing the necessary support to families of individuals with ASD, improving their emotional wellbeing and quality of life through:

• Advice, guidance, and empowerment at all stages of life
• Accompaniment and mutual support for families
• Training for families.
• Inclusive respite and leisure activities.

Advice, guidance and empowerment service

Specific advice: The organisation’s social worker responds to the specific request and provides an answer. Provides information about available internal and external resources that can meet the needs raised by the family.

Ongoing counselling and emotional support: Families accessing this service not only need help with specific concerns about diagnosis or intervention, but also seek guidance and emotional support. We work with the family to develop a plan that identifies goals, actions and facilitators to achieve these goals. This service involves coordination with other professionals and services involved in the family programme. In addition to identifying the family’s needs, a personalised, flexible and reviewable plan is developed for each case.

Legal advice: Families have to deal with various procedures following the diagnosis of their daughter or son with ASD. This involves interacting with different public agencies in various areas such as health, education, social welfare, and family. For this reason, the foundation has various legal professionals who provide pro bono support (voluntarily and without charge) to the organisation and its families.

Search for resources: We assist families with straightforward procedures, including the processing of the disability certificate or the application for the degree of dependency and PIA (Individual Care Plan). We also provide support for more complex challenges that may necessitate extensive assistance, such as appeals, administrative litigation, etc.

Mutual support groups

We provide emotional support for family members. It’s a space where mothers and fathers can express their feelings and emotions, share experiences with others like them, and learn skills and new strategies to cope with situations that cause them stress.

Group family training

We enhance the skills and resources of family members by increasing their understanding of the disorder and how to respond to the needs of their offspring.

We offer various workshops, specific monographic sessions or thematic sessions depending on the needs of the group and the life stage of their offspring (communication, school support, creating materials, sexuality, etc.).

If you would like more information about the family support services we offer at the organisation, you can write to us at: [email protected] or call us on 931 808 926.

These are the services we offer Fundació Junts Autisme to
accompany and support people with autism and their families.