The ABC of Autism Spectrum Disorder
Sandra Queirรณs . EVS Volunteer KANE, Social Youth Development NGO
“My autism makes things shine. Sometimes I think it is amazing but sometimes it is sad when I want to be the same and talk the same and I fail. Playing the piano makes me very happy. Playing Beethoven is like your feelings – all of them – exploding.” Mikey Allcock
Autism is a lifelong development condition characterised by difficulties in social interaction, communication, restricted and repetitive interests and behaviours, and sensory s ens it ivi ties. Although Autism can be diagnosed at any age, usually is diagnosed in the first two years of life. Although, generally referred simply as Autism, the correct term is Autism Spectrum because there is a wide variation in the type and severity of the symptoms that people experienced. There are two main categories of symptoms (Social communication / Interaction behaviours and Restrictive / Repetitive behaviours)
but is important to note that not all individuals presents a l l
s y m p to m s .
Another
important
differ-
ences between the individuals the
in
the
cognitive
spectrum level
is and
the presence of speech. The Social communication/ Interaction
behaviours are
characterized by : making little eye contact; tending not to look at or listen people; rarely sharing enjoyment of objects or activities; do not show emotions or empathy; do not show interest in other person or peers; not engage in pretend play; usually they present echolalia; they look to be in their own world.
The
Restrictive/Repetitive
behaviours are characterized by: have a intense interest in certain objects; insist in following routines and they are easily upset by change; have repetitive body movements or unusual body movements. Another important symptom is related with the sensory experience, they can be easily sensitive to sensory experience ( as sounds and food textures ) but also could seeking for it ( as might like deep pressure touch or vibrating objects).
“Think of it: a disability is usually defined in terms of what is missing. … But autism … is as much about what is abundant as what is missing, an over-expression of the very traits that make our species unique,” Paul Collins
1.
2.
3.
Avoids eye contact and prefers to be alone. Struggles with understanding
Gets upset by minor changes in routine or surroundings. Has highly restricted interests. Performs repetitive behaviours such as flapping, rocking or spinning. Has unusual and often intense reactions to sounds, smells, tastes, textures, lights and/or colours.
Remains nonverbal or has delayed language development.
other people’s feelings.
Repeats words or phrases over and over (echolalia).
“If you’ve met one person with autism, you’ve met one person with autism,” Dr. Stephen Shore
Differences in Autism: In the autism spectrum it is common find two main distinctions : highfunctioning autism and lowfunctioning autism. Previously, Asperger syndrome was also a common term associated with autism but recently it was dismissed of the clinical practice. Nowadays, all the diagnoses are allocated to the Autism Spectrum Disorder. The distinction : Usually, the distinction between highfunctioning autism and lowfunctioning autism is based in IQ, (> 70) . However is also possible found distinctions based in the severity of the symptoms and their ability to live independently. All the non-verbal individuals usually are considered lowfunctioning autistic.
The problem : First of all, the clinical practice doesn't recognize the terms highfunctioning and lowfunctioning. Although this can look very logical it does not reflect the complexity of the autism. An individual can point high in IQ test but not be able to do simple daily tasks or viceversa. Besides that, the use of such labels with children can be very harmful in their development. Each autistic individual is unique and has some skills and abilities more developed than others. Instead of trying to label them, the position should be understand them and how to use the more positive ones to improve the less positive. Instead of trying to label them, the position should be understand them and how to use the more positive ones
to improve the less positive. The absence of speech is something common but that doesn't mean that you will not be able to communicate with that children. Verbal communication is only one form of communication.
Read: Where the Vocabulary of Autism is failing: https://www.theatlantic.com/ h ea l th /ar c h iv e/2 0 1 6 /0 4 / t h e la n gua g e - o f autism/476223/
What causes Autism Spectrum Disorder ? Until now, the experts were not able to propose an unified exclamational model for autism. It seems that autism results of different factors - environment, genetic and developmental factors. Most of the studies indicate a presence of several genetic mutations in autistic individuals. This would explain the great variability of impairments and neural systems involved. The impact of the genetic mutations also seems to be connected with the age of the parents and the risk behaviours took by them (as smoking). There are also some evidence that the failure of embryonic brain cells to undergo normal patterns of migration during early development can affect late brain circuits and wiring of nervecell and wiring of nerve-cell
and wiring of nerve-cell circuits that control social, language, movement and other disabilities. Understanding Autism is a big challenge and we still have a long path to walk until that be completely possible. Autism Spectrum is different of the other disorders because presents a great variability. The symptoms, their level of severity and comorbidity with other disorders made it look as puzzle. Myths about autism: The lack of knowledge about the causes of Autism created some myths. Below we point some of the myths about the causes and the autistic individuals: •Autism is caused by MMR vaccines; • Autism is the result of bad parenting;
•Autistic people have a spe-
cial talent; •Autism can be cured; Autism is a mental health disorder; •People with Autism do not feel love, emotions or feelings;
“When a family focuses on ability instead of disability, all things are possible…Love and acceptance is key. We need to interact with those with autism by taking an interest in their interests,”
Amanda Rae Ross
Is there a cure for autism? As described above each autistic individual is unique and the causes for this condition aren't completely known. Due to this fact, there is no cure for autism. However, there are interventions that can help this individuals. Each intervention plan should be individual and adjusted to the needs of that individual. The interventions usually are done in two main areas, behavioural and pharmacological. A intervention plan in autism include a team with different professionals and is important that they are inconstant contact with the parents and school. A multidisciplinary team on treatment plan usually is composed by speech therapists, occupational therapists, psychologists, neurologists and special education therapists.
They should work in accordance with the same goals. Before design a treatment plan the professionals should assess the levels of impairments and in which extent they interfere with the daily life of the individual. After design an intervention plan, the professionals should make an effort to be consistent about it, this feature is very important for the success of the intervention. However, is important to note that this intervention plan should be modified in order to better adjustment to the individual. Some children react better to some therapies than others, the role of the therapists is be aware of it and adjust their interion. Every modifications should be carefully plan for don't be an additional form of distress to the individuals.
Interventions for children: Some of the most common therapies for autistic children are: • Applied Behavioural Analysis (ABA); •Floor time; •PECS; •Relationship Development Intervention (RDI); •SCERTS Model; •Sensory Integration Therapy; •Speech Therapy; • Training and Education of autistic and Related •Communication Handicapper Children (TEACCH); •Verbal Behaviour Interven-
tion;
APPLIED BEHAVIORAL ANALYSIS : This approach is based on the positive reinforcement principle. Some ABA techniques involve instructions by adults in highly structure order, while others make use of learner's interests and follow his initiations. All skills are broken-down in small steps and tasks and is provided to the learning many opportunities and different environments to practice. FLOORTIME : The goal of this intervention is to move the child for six basic developmental milestones that be mastered for intellectual and emotional growth. This intervention needs engagement for the parents and follow the child's lead. Floor time does not separate speech, cognitive or motor skills but rather address this areas through a synthesized em-
phasis on emotional development. RELATIONSHIP DEVELOPMENT INTERVENTION (RDI) : The RDI intervention is a parent-based treatment that focuses on the core problems of gaining friendships, feeling empathy, expressing love and being able to share experiences with the others. RDI is a parenteducation programme based on the latest research on the brain, developmental psychology and autism that focuses on promoting and enhancing the child’s social and emotional understanding. THE SCERTS MODEL : The SCERTS model el, emphasizes the importance of child initiated communication in natural as well as semi structured activities for a broad range of purposes such as requesting, greeting,
expressing emotions and protesting/refusing. Objectives for the child are developmentally appropriate and may target both verbal and non-verbal forms of communication. SCERTS is a collaborative educational model in that families and educators work together to identify and develop strategies to successfully engage the child in meaningful daily activities. SENSORY INTEGRATION THERAPY : The goal of Sensory Integration Therapy is to facilitate the development of the nervous system’s ability to process sensory input in a more typical way. Usually, this therapy is performed by an occupational/physical therapist that develops a program to provide sensory stimulation to the child, often in conjunction with purposeful muscle activities, to
improve how the brain processes and organizes sensory information. SPEECH THERAPY : The communications problems of autistic children vary to some degree and may depend on the intellectual and social development of the individual. The goal is always to improve useful communication. For some verbal communication is realistic, for others gestured communication or communication through a symbol system such as picture boards can be attempted. TRAINING AND EDUCATION OF AUTISTIC AND RELATED COMMUNICATION HANDICAPPED CHILDREN (TEACCH): TEACCH intervention is very unique because the focus is on the design of the physical, social and communicating environment. The environment is
structured to accommodate the difficulties a child with autism has while training them to perform in acceptable and appropriate ways. The children work in a highly structured environment which may include physical organization of furniture, clearly delineated activity areas, picture-based schedules and work systems, and instructional clarity. VERBAL BEHAVIOR INTERVENTION : This intervention is an extent of the ABA. This approach focuses on understanding why we use words, in order to that therapist avoids focusing on words as mere labels (cat, car, etc.) Rather, the student learns how to use language to make requests and communicate ideas.
PICTURES EXCHANGE CARDS SYSTEM (PECS) : PECS is a type of augmentative and alternative communication technique where individuals with little or no verbal ability learn to communicate using picture cards. Children use these pictures to “vocalize� a desire, observation, or feeling. Throughout the process, which may take weeks, months or years, the caregiver gives constant feedback to the child. It is thought that by allowing children to express themselves non-verbally, the children are less frustrated and non-desirable behaviour including tantrums is reduced. IMPORTANT! Phase I: How to Communicate; Phase II: Distance and Persistence; Phase III: Picture Discrimination; Phase IV: Sentence Structure; Phase V: Commenting
What you need to Know!
Be part of the daily life of an autistic child can be very challenging, specially in the beginning. The next section will focus the daily life on the Day-care center and give you some advices for interact with the children.
The essentials! 1. You are the new element! You are somebody new for these kids and that can be very scary for them. You need to give them some time. 2. Observe! In the beginning you need to observe a lot in order to know the kids and find ways of interact with them. 3. Everyday is different! You need to be prepare for the fact that some days kids will be happy interacting with you and some days don't. 4. Remember : Every kid is different! You need to be aware that you need to use different strategies with different kids. You need to adapt them, not the opposite.
5. Shadows! The best way of help the kids is staying on the shadows. They need your help but they also need to learn how to the things. 6. Structure! You will understand that all the day-care center is structured to the kids and you need to follow this structure to don't confuse them. 7. Be Happy! This kids need that you be happy next to them. If you are responsive to them in a positive way you will be increasing your probabilities of developing interactions with them. 8. Do not quit! You need to be resilient, some children will take more time to respond to your presence but will happen.
THE PROGRAM WHAT IS THE PROGRAM? Everyday the kids have a program that they need to follow. The program is on the entrance and is made using PECS system. They need to pick the card, do what is supposed and then put it back when they finish. ARE ALL THE PROGRAMS EQUALS? No. Every kid has his own program, adapted to his necessities . Besides that, some programs are done with pictures (PECS 2D) and other with objects (PECS 3D). WHY DO THEY USE PROGRAMES? The programs help the kids to know what to do. they also create structure what is important the kids.
Note: You will understand that everything has a label in the Day care center. The picture is from the PECS system and the main purpose is make it easier for kids. For that reason, is important that they are always kept in the place. This system it will very useful for you to in the beginning. You will not know all the language and you can use the pictures as a helper.
TESTIMONY After 8 months of volunteerism at the Day Care I am able to say this is a professionally and personally enriching experience. Clinical psychologist, I studied autism at university and had little experiences with autism through a volunteerism with an Organization and an internship in a child psychiatry unit. This background allowed me to be accepted at the Day Care Center as a European Volunteer. As it was the first time I worked on a daily basis with children and adolescents with autism I have the feeling that I truly learnt about and discovered autism. .I understood, because I lived it, there is no “autism” but that each individual with autism has his/her own specificities. Step by step I was integrated into the Center’s functioning:
after weeks of observation and practical tasks I get introduced more and more into the sessions as therapists’ assistant. It needed time to be fully integrated as it needs time for the children to get used to changes, to accept someone’s new into their routine and as I needed time to adapt myself to the Center’s rules and to get to know the children. Little by little I learned and adapted myself. With time, from the mutual trust came more active volunteerism: suggestion of activities, fully preparation and finally leading them. Respecting the children and adolescents’ temporalities is essential, even though the time it takes might seem long. Being a non-Greek speaker in a Greek environment was a powerful lesson. I had to learn to communicate
differently, to adapt myself to the environment, which helped me to adapt to each children. This specific situation made me understand how communication might be difficult when you do not have the tools. It helped me to pay more attention to each child way of communicate, to discover other ways than verbal communication and experienced how efficient they might be. Flexibility, respect, patience, nonverbal communication, trust, adaptability, intensity are the key words of my experience at the Day Care Center. I learnt so much from the therapists and the children, I will never forget this lifechanging adventure…
Ophélie
TESTIMONY After 4 months of volunteerism at the Day Care I am able to say this was one of the most enriching experiences of my life. In the beginning was very hard for me. I was not able to communicate with the kids and I had some problems in adapt to the routines of the center also. The firsts weeks, I was completely frustrated, specially because the kids didn´t react to me positively or didn’t react at me at all. I t was one of the few times in my life that I though about quitting. I didn’t and I am very happy for that. I studied psychology and we talk about Autism in some classes, so I had an idea about what was expecting me...or I though that I had. I never expect observe so much differences in the kids. Each child is completely unique and each kid has
Good and bad days. Some days I came home completely frustrated. However, when kids began to know you and you began to understand them...It is amazing! I never aspired to be a clinical psychologist, special because I never had a special motivation to work with people. I am fascinated for research and understand the human behaviour but not in a first line. Well, come to the center and met all this incredible children made some changes in my way of thinking. It is hard for this kids share their world with us, but when they do it...the feeling is completely indescribable. Small things make all the differences with them, when they a look with you, when they respond to your activity, you know that your role is important. Being a volunteer in the Day-
care center gave me an extra motivation to study the Autism Spectrum Disorder and showed me how a multidisciplinary team is indispensable . This was an amazing experience for me as human being. I grew up a lot with this kids and they made me realize how patience is important for achieve our goals. Professionally, this was an outstanding experience. Observe the children allowed me a deep understanding of everything that is still need to study for made their life much better.
Sandra Queirós
"The volunteers responsible for this publication are hosted in Greece in the framework of the European Erasmus+ programme, KA1/youth - European Voluntary Service. This project has been funded with support from the European Commission. This publication reflects the views only of
the
author,
and
the
Commission
cannot
be
held responsible for any use which may be made of the information contained there in"