What is autism?
Autism is a developmental disorder of neurological origin for which the exact causes are currently unknown, is not curable and the prevalence in Catalonia is 1 in 50 boys and 1 in 200 girls in the last study in Catalonia: “Temporal and Geographical Variability of Prevalence and Incidence of Autism Spectrum Disorder Diagnoses in Children in Catalonia” (Perez-Crespo, et al. 2019).
People with autism have difficulties, to a greater or lesser extent, in:
1) communication and social interaction,
2) repetitive behaviour patterns, rigidity of thought and altered sensory processing.
More information on symptomatology can be found in the latest version of the Diagnostic Manual of Mental Disorders, DSM 5 (APA, 2013).
We speak of a spectrum disorder of autism, as we can find a great heterogeneity of people with this diagnosis (Fóthi et al., 2020; Mottron and Bzdok, 2020) and with different support needs. In the DSM 5 they classify according to the intensity of support that the person may require, establishing three levels of support:
Grade 1: needs help
Grade 2: needs notable help
Grade 3: needs a lot of help
It is a particularly vulnerable population because:
- Between 50% and 70% of autistic people have an associated intellectual disability (Charman et al. 2011).
- 40% of people with autism are non-verbal, which is why they can benefit from other communication codes and have to learn other ways of communicating (e.g. using visual aids such as pictograms).
- Almost 28% of 8 year olds with ASD have self-injurious behaviour.
- Almost two thirds of children with autism between the ages of 6 and 15 have been neglected at school.
- Anxiety disorders affect approximately 11-40% of children and adolescents.
- Depression affects 7% of children and 26% of adults with autism.
- One third of people with autism have epilepsy
- Most people in the autistic spectrum have other comorbidities or conditions, such as ADHD or attention deficit hyperactivity disorder (38.5%; Rong et al. 2021) or schizophrenia (between 4 and 35% of adults, while in the general population it affects 1.1%).
- The health problems associated with autism extend throughout life, from infancy to adulthood, although autism has a strong polygenetic component with inheritance ranging from 50 to 80% (Gaugler et al., 2014; Sandin et al., 2017), so far no biological marker has been identified (for a review, see Goldani et al., 2014) and the causes of this condition remain unclear (for a recent review, see Hodges et al., 2020).
- Recent studies (Hirvikoski et al., 2018) show that people with ASD have a life expectancy of 16 years less than the rest of the population (54 years) and, in the case of intellectual disability or illness, this premature death increases to almost 30 years before the population average (39.5 years). One of the causes points to the fact that this population does not have equal access to medical services. Information, dissemination, training and visualisation of the disorder are essential to change the current reality and the creation of specialised services that provide care for these people throughout the life cycle, but especially during the longest part of life, which is adulthood.
* (Extreme information from different scientific studies and institutions that refer to autism)
From childhood to adolescence
Unfortunately, in many cases the diagnosis is not made until later in life, between the ages of 3 and 10 years (Fuentes, Hervás and Howlin, 2020), a fact that in girls or boys with autism is even longer. Early identification of the diagnosis is necessary in order to be able to offer the necessary support to families and to provide appropriate education and intervention.
At a general level, families see the educational stage as a continuous effort: to receive the necessary support in the classroom, to seek appropriate intervention, to include their child in extracurricular activities, etc.
Furthermore, it is a stage when almost half of children and adolescents with ASD are vulnerable to bullying (Hernández, 2017). During adolescence, it is also added that it is a stage of discovery, where the importance of social interactions grows, the first intimate and sexual relationships appear, etc. Facts that can be difficult, to a greater or lesser extent, for people with ASD. It also involves decisions for the near future, and this involves adapting to changes, choosing what you want to do in the future taking into account the possible options. A decision that often rests with the family and where fear for the future is accentuated in adulthood.
Therefore, it is necessary to have adequate socio-emotional support at this stage, as well as the necessary supports throughout the entire life cycle to achieve an optimal quality of life.
Autism in adulthood
At present, the only option for many people with ASD and great support needs when reaching adulthood, is institutionalization. The problem is not local, but global. And, it must be taken into account that the prevalence on the rise.
People with ASD may have difficulties leading an independent life without support due to a lifelong disability. People with ASD may have difficulties leading an independent life without support due to a lifelong disability. This group of people are those who, during this stage, are less likely to receive specialized care (Fuentes, Hervás and Howlin, 2020).
We are in a situation where despite the difficulties present during the diagnosis, the school stage and adolescence, adulthood is a stage where uncertainty arises (and now what?) and lack of support for families and people with autism. Therefore, it is necessary that all people with ASD can continue their lives with specialized and personalized support and intervention for each person in question in order to enhance their capacities and provide strategies, and, at the same time, make adaptations of the environment All this, with the ultimate goal of achieving the highest possible quality of life, both for autistic people and their families.
All this implies the need to have specialized services and professionals who can respond to the needs of each person from childhood. In this way, it is guaranteed that in adulthood people with autism can live independently in community spaces and join the world of work. Given that this group is one of those that presents more difficulties in joining the labor market, the acquisition of pre-employment skills will improve employment rates and reduce the risk of social exclusion. In addition, it is necessary to establish skills maintenance processes and create community spaces that move away from an assisted lifestyle.
