Good practices working with children and young people with ASD (Autistic Spectrum Disorder)
I. A practice that suits the subject
The main objective of this seminar is to illustrate the different practices and experiences that are developed within the participating organizations, in order to define the specificity of their clinical approach and to establish those elements, common or specific to each one of them, which could be considered good practices in working with children and adolescents with ASD.
In the current state of knowledge and results of scientific research related to autism, it is advisable to adopt a prudent position in working with children and young people with ASD, and to bet on agreed answers between professionals and families. After more than fifty years of research, knowledge – whether on the causes, on the presentation and evolution of symptoms or on treatments – remains very limited. This precaution and this commitment to dialogue are not contradictory to the progress of science, whose work is increasingly oriented towards multi-factorial – genre, epigenetic, biological, environmental – and diverse expressions characterized by plasticity and uniqueness.
Recent reports on “good clinical practice” (1) on autism indicate that currently there is no a “good practice” for a type of psychosocial support or treatment of children with ASD. Unlike the treatment of certain diseases that fall within the field of medicine, currently there is no scientific “test” sufficient to recommend to all children with ASD a treatment that guarantees effectiveness. Similarly, studies to this date haven’t demonstrated the efficacy of one type of treatment that doesn’t lack from a number of methodological flaws that greatly limit the relevance of their results.
From the starting point, the clinical approach of the participating organizations shares an ethical position that is the basis of their therapeutic strategies, and they support the notion that the autistic child is a “subject”, which implies an absolute respect for its uniqueness and, therefore, an individual approach, case by case, based on a complement and a collaboration between the child and the adult taking into account the preferences, the choices, the inventions and the solutions found by the child himself.
This respect and this consideration for the singularity of each child and each participant, taken as the mark of a personal style, is the motor of work with the child and our starting point to elaborate what can be a good practice, as practices that agree to work on what is at stake for the child with autism.
In the light of this starting point, we will work on different aspects that can become good practices in working with children and young people with autism and their families: the welcoming function in institutions for working with autistic children and young people, such as Pre-treatment condition; The importance and difficulty of early diagnosis; The modalities of treatment from the earliest childhood and its continuity; Attention to the crucial moment of adolescence in these children; Strategies for adulthood; Work with parents in each moment, in each of the different ages of life.
II. Difficulties and risks in the establishment of which could be a “good practice” working with beings human, autistic or not.
Without a doubt, the utility and importance of certain procedures of verification applied to the processes of manufacture and production, or to the final product itself, is needed within the field of the industry as well as other fields similar of the human activity. For example, the analytical results of microbiology, of inorganic materials, etc., in the processes of elaboration of certain food, are procedures essentials for its viability. Adding to this, the establishment of mechanisms of control that ensure the application of these procedures, here, we are describing an aspect of what is called quality management applied to the industry of alimentation.
The methodology of those procedures of microbiology determination, can apply trouble-free to other fields, for example, to the control of the asepsis of the surgical material of a hospital, but if we try to apply this to certain areas of the socio-health field and practice or to the educational realm, it becomes a task impossible to do, and when this impossibility is forced, the result is a charade or a fraud.
Forcing the application of this methodology, that belongs to “quality management/control” and its certifications, to certain procedures and methodologies within the social-health intervention field, like health and education, tries to avoid, sidestep and trick the difficulties inherited within the social-health ground. And this difficulty exists since the first step, trying to address the difficulty to establish the criteria for the evaluation.
This inclination and tendency to force the standardization, that tries to impose an authoritarian way as the only-one acceptable way, involves a conception of what is wanted to be evaluated and submitted to quality control, a conception of the human relationships, of the social spectrum, how this emerge in the subject, since its first moments of life, its movements in relation to its environment, to its human peers and to the world that surrounds it. Which means this is a conception also, of the humankind and its suffering.
The ways in which humans establish relationships, have a qualitative fundamental difference with other systems of relation that we know, in the core of each species and among the different species, this differential trait is the variability, the diversity, the spontaneity and the creativity; the ability of improvisation and of innovation, traits funded precisely in the inaccuracy, in the maladjustment, in the structural misunderstanding in our system of communication: the human language in its wider sense, inhabiting the speaking body. Without those traits there is not human being, there is a machine.
To talk about good practices in the work with the children and young that present the difficulties linked to the called ASD means for us, to make resistance to the push, blatant and threatening, to a devastating practice that ignores all the suffering that doesn’t fit, within the rude and rigid molds that try to placed this subjects under the disability or disorder spectrum. What we suggest here, is to investigate, update, put to test and promote practices that, respecting the basic conditions of humanity, agree to the difficulties that present these children and young.
The organizations and institutions participating in this seminar have developed and practiced, since several decades ago, a series of practices that are respectful with the particular ways in which each child responds to its difficulties, and at the same time convenient to the treatment itself, and therefore proper to the establishment of the therapeutic relationship; in addition to be useful in the work with the families (mothers, parents, brothers, grandparents, sometimes); appropriate to promote the interest to know and to learn, also helpful to establish and keep an educational link with teachers, educators and anyone that could adopt with them a position of knowing, not knowing.
The verification about what is the most convenient and the best, the interest to figure out how is done and to establish how to do it correctly and pertinently, is a human-interest hold by the humankind, as own as the firmness needed for this task, rigor that must prevent to take certain shortcuts. In this case would be to alter our practice in institutions in a ‘matter of manual’, under this trend that Jacques Alain Miller (2) indicate as the American passion of “how to”: “each thing in the world, each activity in the world is susceptible of have a “how to”, how to do … one can have a how to drive a car, but from there to know how to deal with men, with women, with children, with the stars, with itself, with the body …” that difference, that gap is the one that we try not to force, not to hide, there where the discourse of the quality management with its proposal of generalized formalization doesn’t want to know, it wants to be imposed. 1
Trasnlation by Isolda Alvarez and Liliana Kruszel
(1) Please go to the work made in Antenne 110 in https://www.antenne110.be/qdbp
(2) Miller, J.A., Structure, development and history. Gelbo. Bogota 1999.
(1) Ver el trabajo realizado en Antenne 110
(2) Miller, J.A., Estructura, desarrollo e historia. Gelbo. Bogotá 1999.