With many years of experience as a researcher and lecturer in Occupational Therapy, Helena Reis, gave her first step as coordinator and author of the book that intends to inform and help those who live side by side with the autism spectrum disorder.
After “a very hard and very challenging diagnosis”, comes the assistance of a multidisciplinary team work that brings together health professionals, educators and the family of these children who are in the beginning of this path and need information for a greater knowledge of the challenges of this condition – it is this collective participation that marks the big new of the book and that distinguishes it from what already exists in the national panorama.
What makes autism spectrum disorder such a difficult condition to be understood?
Autism spectrum disorder is a very complex and difficult neurodevelopmental disorder because it affects all areas of child development, the language, social relations, the autonomy and even the motor development. These are areas that do not develop harmoniously in children with autism. Above all, there is a difficulty from a social point of view, a lack of interest in interaction with other people and also a commitment to language development, because not all children are verbal.
Obviously, if language is being compromised and if there is this social disinterest towards the other, […] this compromises relationships. And these children are usually integrated in an educational context and therefore it is necessary that all stakeholders have an understanding of the child to better integrate them, so that they can participate in the activities as other children. This requires the involvement and commitment of all, both professionals and families.
The book ‘Understanding the Autism – From family thinking to technical thinking’ begins with a family speech. The aim of starting the book with this particular and intimate vision, was to encourage other parents who, surprised by this diagnosis, are further from this reality?
I wouldn’t say parents are the ones that are further away. I would say parents are the ones who better know their child. Sometimes they may not be able to understand them totally and that is why I think that a team behind working with parents together, helps in the whole process, both for parents and for professionals, because we have to be very aligned with what is also happening in the family context. The greatest difficulties that parents experience with these children occur in the daily life activities. And we are external professionals, who are out and we really need the cooperation of parents.
These children and young people always have to have a multidisciplinary team behind, and it was with this in mind that I also invited several professionals from different areas, because that’s how I always have been working. And I invited the families to be part of this process, because they also have to be part of the team and they do. I don’t design teams working without parents, collaboratively.
Therefore, I think that families had to give this contribution on this process. Because, when you get a diagnosis of autism, it’s very hard, it’s all very dark.
So, I invited these mothers not only to share their feelings in this process, but also because of the importance they have in this path with us, as we can only get the child to evolve if the family stays with us, if the family works with us.
"From the national point of view there is already a lot about autism, what did not exist, so far, was a multidisciplinary team talking about it."
And what other professionals were part of the construction of this work?
First of all, I never thought about writing individually, because it would not make sense, my reality was never that, since I’ve always been working within a team. And I wanted the other professionals of this team to also bring their specific knowledge, from their area. Therefore, it all started with doctors, because usually this is how this process begins, the family receives a diagnosis from the doctor, pedopsychiatrist or pediatrician of development. I also invited psychologists, speech therapists, and I had another colleague of mine, occupational therapist, that wrote with me.
Moreover, I wanted to have someone from the educational context here, because these children are also in schools. So, in addition to all these healthcare professionals, I also invited Educational Professionals, who spend much of their time with these children.
What is the real impact of occupational therapy on these families, and especially on these children?
These children have some difficulty in modulating to sensory systems and therefore either hyperreact or hyporeact to sensory stimuli. And they have that kind of behavior like covering their ears when they are surronded by a lot of noise, not tolerating a haircut, not being able to dress or undress themselves. Therefore, this has implications in the activities of daily life.
From the point of view of food, there are children who sometimes either just eat everything crushed or then just like things extremely solid and crispy. And this has to be explained to parents in this way, because they bring us these difficulties that later have implications in the occupational participation of these children, in all contexts.
They are able to beat their classmate because their classmate touched him or start yelling because they cannot participate in the activity. And also educators need to understand this.
From the point of view of motor planning it is also characteristic that these children have the so-called dyspraxia, changes in motor planning that makes them a little clumsy and uncoordinated in motor activities.
The occupational therapist acts in the activities of daily life of these children, in occupational activities and, somehow, according to a sensory-integrative approach, get involved with these children and families, helping the parents to understand why things are happening that way and to improve the child’s participation in these activities, making them more independent and more adjusted to the contexts and to activities of daily life.
"I think that, somehow, the book is designed for this initial journey, since receiving and digesting a diagnosis until starting an intervention with a multidisciplinary team."
This is a scientific and technical book. How can other professionals who work with this autism spectrum disorder find in this work tools or strategies to better meet the needs of their children?
Well, the challenge was not to make the book too technical to not be boring.
And so that parents can also get involved and understand what is written, clearly?
Exactly, and this was something discussed with all the elements that wrote the book. The content, the structure I had thought about the way I wanted for any parent, any educator, any professional who were starting this process could read the book and take information that could be useful.
From the dysfunctions of sensory processing, to the implications on the child’s occupational participation, I tried to describe in a not very technical way what can happen in children and bring some strategies that may be useful for parents to realize that, considering the profile of the child, they can adjust some strategies.
One of the things that parents look for when they go to the intervention, and that exists in different teams, are the distinct models of intervention. We know that there is some more behavioral or developmental intervention models and the teams act according to these models. And what was asked [in this book] was to present a chapter of the various models that exist without judgments. Neither children are all equal, nor parents are all equal, and therefore parents are superior in decision, for example, there are many parents who sometimes want their child to speak, regardless of how they will speak. And parents have to know, they have to be informed about what exists and then they decide.
The book tried to bring some information. It also presents the diagnostic classification, the several types of disturbance that may exist and also displays the alarm signals. Because, sometimes, parents feel that there is something wrong, but they do not know exactly what it is, and I think it might also be useful for these parents who have doubts.
And we also tried to talk a little about the impact that this diagnosis can have on the family and not exclusively on the parental system. Because the family is a system and, therefore, there is a parental system, the conjugal and the fraternal subsystem, that addresses the impact it has on siblings, which is also difficult. I think that, somehow, the book is designed for this initial journey, since receiving and digesting a diagnosis until starting an intervention with a multidisciplinary team.
But it’s a book that doesn’t end there. Of course, there’s still a lot to say. This book is oriented to younger ages, because it is also my reality, but I think it is a book that can allow to continue to develop other bibliographical collections and other exhibitions, in more advanced ages since there is going to be a lot of other challenges.
Do you think that the clear and objective writing present in the work will mitigate the lack of literacy in this area, making people understand this condition and, therefore, act in a more adjusted way to face these children’s needs?
I think knowledge brings us some serenity. So I think the more information at this level, the more naturally people will also deal with autism spectrum disorder.
From the national point of view there is already a lot about autism, what did not exist, so far, was a multidisciplinary team talking about it, where their knowledge can link each other. And this was the message I wanted to pass: [the existence] not just of a technical team, but with the family inside.
Therefore, I think it was important to bring the family to these personal reports, in the first person and obviously, I am suspicious, but the chapters of the mothers are, for me, the most beautiful chapters to be read, because they are the most felt and the most authentic.
"The occupational therapist acts in the activities of daily life of these children, in occupational activities and, somehow, according to a sensory-integrative approach, get involved with these children and families, helping the parents to understand why things are happening that way and to improve the child’s participation in these activities, making them more independent and more adjusted to the contexts and to activities of daily life.
Have you ever thought about writing a work that reflects the reality of those who have to face this diagnosis?
I never thought about writing a book on autism. I love to investigate in this field, I have publications and I really want to continue doing this. But writing a book never crossed my mind. It was an invitation made to me and I said “Of course, I accept, let’s see what will result from here”.
So it was never part of my goals, it was something that happened naturally and that also makes me very happy, because I like it when things happen that way, because it’s in a natural way, and I think the results or at least the feedback I’ve been hearing is very positive.
About the parents, the book allows them to take practical lessons that help them in everyday life.
Yes, of course, that was the point. Particularly, as it is an area with a specifical nomenclature and a very technical language, I tried in some way, to transform it into questions of real situations, for parents to understand and identify with that “my child also does this, so he can have this, so this can work with him”
Exactly in order for parents to feel supported there is also a project that, despite not being funded, is being developed, with students and teachers from ESSLei and ESTG, which resulted in the development of a mobile application called Regul-A. Want to talk about this project?
The focus of the intervention is always the child. But sometimes I think they forget a little bit about the family and how hard it is for a parent to deal with a child like this at home. In this project, my thoughts went to the family. The focus was to try to develop an application in which parents could consult, depending on the profile of their child, more hyporeactive or hyperreactive, according to the various sensory systems, which are 7 [olfactory, gustatory, visual, auditory, tactile, vestibular and propriocetive] and having some strategies that could help these parents at the moment they feel their child unregulated.
For example, they are bathing the child with the shower, the child suddenly begins a tremendous tantrum. Eventually, the child may be more hyperreactive from a tactile point of view and, does not tolerate shower water in the body and, therefore, the goal is to have some solutions and strategies that can help the father to facilitate the interaction and participation of the child in this bath activity which is a daily and regular activity.
And my idea was to build this application not only for the family context, but also for the educational context. Educators sometimes feel enormous challenges concerning the impulsivity and reactivity of the child and they also need, sometimes, some strategies. As the project was not funded, I decided to gather Occupational Therapy students who finish their courses and have to develop their research work, and we are doing this in parts.
We have already built the application. Of course, Professor Catarina Reis was a crucial element in this process. And, above all, it has been an articulation and a very rich collaboration. We take the knowledge of the health area and they [computer engineering students] bring the knowledge on the informatics. The Regul-A was developed and we already have an international publication on this.
This year I gathered another group of students to continue the project, and we did the usability tests of Regul-A. Initially it was developed only for Android, but we have already developed for iOS also this year. So there have been some developments, but since this is not a funded application, we have to do this step by step and I think it’s been a very positive scientific and pedagogical process.
This work was funded by Portuguese national funds provided by Fundação para a Ciência e Tecnologia, I.P. FCT/UI/05704/2020