Autism and high support needs: what happens after school?
When a child is diagnosed with autism, in addition to the process of accepting the diagnosis, a number of expectations are altered, and a series of barriers become apparent that will need to be faced, both by the child with autism and by their immediate environment. This process can be very complex when we are talking about autism that requires significant support (level 3) and is accompanied by intellectual disability or language impairment (DSM-5-TR, 2023).
Without the necessary support and educational measures, the schooling process and the educational stage can be a difficult journey, not only for the child but also for their families. Furthermore, when this stage ends and they reach adulthood, the personal and environmental resources available during this period may be diminished, and that's when families face certain questions, some of them difficult to answer: What will happen now? What resources are available? How can they be accessed? What will happen to my son or daughter now that I'm also getting older? Let's take it one step at a time.
Autism and intellectual disability
Autism spectrum disorders (ASD) are neurodevelopmental disorders that begin in early childhood and persist throughout life. They affect communication and social interaction and are characterized by restricted and repetitive patterns of behavior , interests, or activities . As outlined in the DSM-5-TR (Diagnostic and Statistical Manual of Mental Disorders), different levels of severity are established depending on the level of support the individual needs, with level 3 requiring the most support in the two areas described above.
It's worth noting that roughly two-thirds of diagnosed ASD cases have normal intellectual capacity, but what about the other third? Approximately 30% of people with autism have an intellectual disability (ID). Intellectual disability, or intellectual developmental disorder (IDD), is a neurodevelopmental disorder characterized by significant limitations in intellectual functioning and adaptive behavior that begin during the developmental period. While more severe levels of intellectual disability are not necessarily associated with greater severity of autistic traits, they do affect the learning of skills necessary to cope with the challenges posed by autism itself. In other words, there will be greater difficulty learning the rules of social interaction, acquiring spoken language and speech comprehension, and adapting behavior and inhibiting potentially maladaptive behaviors in certain contexts.
Making daily life easier for people with functional difficulties
Furthermore, it is worth noting that, over the years, the concept of functional adaptation has gained increasing importance and is now seen as a factor associated with prognosis. Functional adaptation is defined as the set of skills or abilities that allow individuals to meet the standards of independence and personal responsibility expected for their age and social group. Individuals with autism who share a profile similar to that described above (level 3 support in relation to the core symptoms of ASD and associated intellectual disability) experience significant difficulties in their functional adaptation.
When all these factors converge, we are referring to people with autism with high support needs .
Support needs after the school stage
That said, many children with ASD and high support needs, due to their specific characteristics, require intensive measures and support during their schooling process, as they need high-intensity, long-term interventions to address their unique needs. These measures and supports include different schooling options that involve various organizational structures and respond to different degrees of curriculum adaptation depending on the type and level of support required. These options may vary depending on the region, must be flexible, and should adapt to the student's developmental and growth process. Generally speaking, depending on the type of school, the schooling options for students with ASD and high support needs can be classified into two categories:
- In a regular center with specific units.
- In a special education center with the possibility of shared projects with mainstream schools.
However, due to the intensive nature of the interventions they require, a large number of children with these needs attend special education centers, the vast majority from the early years of primary school, and complete their schooling at age 21. But what happens after school? Will the programs that began within the educational setting continue?
People with autism and high support needs have the right to fully develop their working life projects, with the necessary support.
Young people with autism and high support needs, regardless of whether they have completed their schooling in one type of center or another and the intensity of the actions they have required during their educational stage, have the right to fully develop their working life projects , even if it is through certain specific services or programs and requires the certificate of recognition of the degree of disability .
If you have to take care of your child, you can request a paid reduction in working hours.
Support services and programs
As a starting point for the post-compulsory education pathway, and focusing on the resources and programs available in Catalonia (Spain), from the age of sixteen, a specialized team, the Employment Assessment and Guidance Team (EVO Laboral), can conduct an employment assessment. This service evaluates the work capabilities of individuals with disabilities, provided they are over sixteen years old and have a disability rating of 33% or higher. This assessment is required to access non-work-related day care services , which are typically used by most young people with autism and high support needs, and can be reviewed if the initial assessment does not accurately reflect the individual's abilities or needs.
There are different types of day care resources that aim to meet the diverse needs of these young people and that differ according to staff ratios and the activities to be carried out according to the intensity and type of support needed:
- Occupational insertion service (SOI).
- Occupational Therapy Service (STO).
- Specialized Care Center (CAE).
Occupational centers (SOI and STO) aim to develop professional, personal and social skills of people whose needs hinder their labor integration processes, as well as to support their labor incorporation and social inclusion through individualized pathways.
On the other hand, specialized care centers (or CAE) provide people with greater support needs with the necessary resources to improve or maintain their level of personal autonomy and enhance their personal and socio-labor development.
Another important aspect is the transition from services offered by child and adolescent mental health centers (CSMIJ) to services within the adult mental health network when a person reaches adulthood. Understanding the cognitive, sensory, and emotional characteristics of individuals with autism and high support needs, as well as providing comprehensive care, requires a specialized service beyond what adult mental health centers (CSMA) can offer. Therefore, there is a specialized mental health and intellectual disability service : the SESM-DI, a free public service that provides specialized care to people with intellectual disabilities and psychiatric conditions or behavioral disorders, from a multidisciplinary and community-based perspective, with the aim of providing them with higher quality mental health care.
The concern and role of families
Finally, and equally important, one of the most concerning aspects is the role of families . As the individual with autism and high support needs grows older , so does their family unit, a fact that causes significant strain, stress, and confusion , leading most families to ask themselves questions such as, "What will happen to my son or daughter when I'm gone? Where will they live? Who will help them manage their future?"
There are still many needs to be met during the aging of people with autism and high support needs, such as the development of housing programs, specific comprehensive care services, or new social models.
There will come a time when many parents will no longer be able to act as caregivers. In some cases, siblings will take on this role, but this is not always possible. There are decision-making support organizations —formerly guardianship foundations that changed their name after the new law on support measures for people with disabilities—that address the needs of people with intellectual or developmental disabilities, supporting them in their life plans.
All these issues deserve special attention and to be addressed in greater depth, since, despite the latest research and advances, there is still great confusion about the active aging of people with autism and high support needs , and many needs to be met, such as the development of housing programs, specific comprehensive care services or new social models.
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