Dear readers,
MSSA team
Project ISEC – ADE
//Tag: MSSA
//Autism_PCP conference in Greece – MSSA’s Vice President speech
//Hello everyone,
My name is Ivana Vasilevska Petrovska – and thank you so much for coming to this online conference. On behalf of all my colleagues, I want to say to every parent, teacher and any other professional involved in autism – it is great to have you here!
I’m vice president of the Macedonian Scientific Society for Autism, one of the researchers and trainers who worked on the Autism PCP project for the past 3 years.
This conference is about dissemination of the project results, and so, in this short presentation I will give an outline of:
- the motivation for this project
- the purpose of the field research we conducted
- and the main findings of the articles published
People with an autism spectrum condition are entitled to services that enable participation and access to society on equal bases with everyone else. Furthermore, they are entitled to a voice on all aspects of their life, having to make decisions and not having decisions made for them. We undertook this project in order to explore and adapt the PCP methodology – to the needs of people with autism.
The first step we took in developing the autism PCP approach was a research of good practices.
Complementary to the good practice research, next, we looked at the current conditions for people including children, with autism, across the partner countries. We did a field research, a survey with 127 informants, coming from 4 distinct groups of stakeholders:
- young people with autism,
- parents and family members of people with autism
- teachers and
- Other professionals, such as: special educators, social workers, psychologists, therapists, counsellors etc.
To facilitate further understanding of the daily challenges experienced by persons on the spectrum and their families, we looked at key topics that are well documented areas of need for persons with autism.
Each topic was discussed in the frame of four questions or sub-topics: (1) is there any intervention or support in place right now (if needed)? (2) What is working? (3) What is not working? (4) What would be required to help?
In this way, we successfully collected a wealth of significant information that was subsequently published in 2 international journals.
The first article that came out is entitled Environmental Barriers and Facilitators to Participation of People with Autism Spectrum Disorders: stakeholders’ perspective
This title was published in the Journal of Reattach therapy and Developmental diversities. An international journal – indexed in Scopus, that publishes open access and the article is open for anyone interested to read it.
In this study, we identified the most common barriers faced by individuals with autism and highlighted facilitating factors that we then utilized in the development of an autism specific PCP approach.
The barriers, affecting not only the individual with autism, but also family functioning and quality of life, stem from difficulties related to the autism condition- but also from environmental factors. We found that environmental accommodations could significantly reduce barriers resulting from the autism challenges. These accommodations or positive practices balance out the environmental barriers, that we defined as communication, attitudinal, and systemic barriers.
- According to stakeholders, over half of the individuals with autism required supports to communicate effectively.
- A significant number of individuals in our sample were not supported regarding challenges in social interaction/communication (29.87%) and isolation/loneliness (53.25%).
Support for alternative means of communication is found to be one of the strategies to facilitate participation.
A very important consideration in supporting social communication and interaction is providing opportunities for socialization.
In relation to anxiety issues, One third of our sample is facing significant lack of necessary support.
And the prevalence of anxiety was (87%) in our sample. This is greatly larger than the prevalence cited in the literature that is (between 11 and 42%).
This condition places people in a vicious circle, as untreated mental health conditions can profoundly worsen autism’s behavioral challenges, and thus, additionally compromise social participation.
We have identified environmental, attitudinal and communicational barriers related to anxiety in persons with Autism, which need to be addressed in an effort of person-centered thinking and planning.
Generally, we found that people with autism are a largely under-served population so our next article was more focused on this issue.
It is entitled PARENTAL PERSPECTIVES ON SUPPORT NEEDS AND AVAILABILITY OF AUTISM SERVICES IN SOUTH AND SOUTH-EASTERN EUROPE and was published in the Journal Advances in Autism.
This journal is not open access, but we can share an author’s copy with anyone interested.
This title explored how service delivery systems are responding to the specific needs of autistic individuals, as perceived by parents.
Thematic analysis revealed three broad themes:
- challenging pathways to service utilization,
- insufficient service options and providers’ competences, and
- a lack of continuous and meaningful support across life span.
A concerning portion of close to 50% of perceived needs of children and youth are currently not being met.
Challenges with service utilization includes problems with accessibility of existing services and support, related to time and effort required to advocate for and obtain support as well as information about available options. The significant financial burden on families associated with supporting an autistic individual has been well documented. Increased funding allocated in the form of reimbursement of commercially available services can lift the financial barrier identified in accessing autism services.
Next, our results show a limited range of available services that is not sufficient to meet the support needs of individuals on the spectrum. The most critical areas of needs include management of challenging behaviors, social and communication skills, atypical sensory reactivity, and loneliness and depression. Autistic individuals have diverse support needs and the support systems are lacking specific understanding in meeting those needs.
Findings supporting the third theme emphasize that communities need greater understanding of the heterogeneity in the autism population as well as the changing support needs over time, in order to provide appropriate and meaningful education programs and community and health services to children and individuals across the life span.
The need for a more flexible and individually tailored approach in service provision dominated in the experiences of the caregivers. Individualized and person-centered approach in service provision is considered instrumental in providing appropriate and meaningful programs to meet holistic needs.
Individualization of services inherently requires more personal and parental input in educational planning and service planning in general. Besides input from caregivers, a key consideration to the person-centered approach is meaningful participation of the individuals themselves, in decision-making and expressing aspirations and support needs. We advocate for a shared decision-making approach, based on a collaborative framework between autistic individuals, their families, and service providers in order to enhance individual’s outcomes. It is imperative to devise truly participatory mechanisms attentive to the diversity of voices within the autistic community.
We have shown that people with ASD have unique support needs that are qualitatively different from other special needs. and communities are lacking specific understanding and approaches in meeting those needs. The personalization of support services is a crucial factor to promote health, equity and well-being of persons with ASD. This approach is also considered as an effective practice in supporting children and adults with Autism Spectrum Disorders (ASD), to increase social inclusion, independence, choice and autonomy. The insights from key stakeholders’ view point represents indispensable considerations in overcoming barriers to social participation and increase decision making through Person-Centred support for people with ASD.
“When people not used to speaking out are heard by people not used to listening then real change is made.” (John O’Brien)
This is what PCP can provide for people with autism – to speak out and be heard.
Thank you very much for your attention!
I wish you all the best, greetings from Lake Prespa!
MSSA Vice President
I LEARN AND GET BEYOND MY LIMITS
//Summary
The Subject of the Project:
To provide the skills which individuals with autism and intellectual disabilities will need after disasters and emergencies by producing innovative educational materials.
To provide the skills which individuals with autism and intellectual disabilities will need after disasters and emergencies by producing innovative educational materials.
Target Audience of the Project:
Individuals with autism and intellectual disabilities. They are usually trained using visual materials with special education methods such as one-on-one and face-to-face. For this reason, parents and caregivers of these individuals have also been identified as target audiences to provide special education opportunities.
The Objectives of the Project to be achieved are as follows:
– To ensure that individuals with autism and intellectual disability can communicate with the right people after disasters and emergencies,
– To ensure that they display the correct behaviour shapes to stay safe,
– To integrate these individuals into the disaster and emergency management system,
– To increase the professional knowledge and skills of the project partners and related participants.
The final goals as a policy are:
It is aimed to affect the policies and programs that can be developed in order to overcome the deficiencies in disaster and emergency awareness training and rehabilitation of disabled individuals including autism and intellectual disability.
Content of the Project:
1- Dictionary of disaster and emergency basic terms adapted for individuals with autism and intellectual disabilities and prepared with special teaching methods,
2- Educational content consisting of video, animation and digital books that teach correct behaviours after disasters and emergencies,
3- Digital library for disasters and emergencies prepared specifically for these individuals,
4- The correct behaviours of the personnel working in disasters and emergencies in their approach to these individuals.
Project Partnership:
The project partnership was created by bringing together organizations with different expertise in disaster and emergency situations, autism and down syndrome, distance education, disability, design, education, risk management and innovation in line with the subjects and objectives.
1- Eskişehir AFAD, public body, experienced in disaster awareness training, response and evacuation in disasters and emergencies.
2- Osmangazi University, experienced in distance education, innovative design and user interface solutions.
3- YERSİS is an educational consultancy company that researches the issue of accessibility among individuals with special needs during disasters and emergencies.
4- Tohum Autism Foundation is a non-profit and in the public interest healthcare and education foundation in the field of autism.
5- Down Syndrome Association is a non-governmental organization that works to ensure that individuals with Down syndrome can establish an independent, productive and integrated life.
6- EDSA is an umbrella NGO that brings together 38 national organizations across Europe.
7- MSSA is an NGO established to realize, coordinate and carry out the interests and training of people with autism.
8- The Research Center on Disability and Marginality (CeDisMa) of the Catholic University of the Sacred Heart works to develop knowledge for teachers, educators, trainers, coordinators, social workers in the field of special education.
Outputs of the Project:
1- Adapted Disaster and Emergency Basic Concepts Dictionary for Individuals with Autism and Intellectual Disability
2- Distance Education Portal
3- Digital Library
Project activities:
Preparation Process;
1. Working meetings with relevant organizations and associated partners (universities, NGOs on autism and intellectual disability, etc.)
2. Visits to special education and rehabilitation centres.
3. Literature review, research and data collection.
The implementation process;
1. Transnational Project Meetings.
– Project management, distribution of tasks among partners, time and financial management etc. administrative issues.
– Sharing experience, good practices and know-how for intellectual output production.
2. Output development process.
Dissemination Process;
– Project Workshop as a Multiplier Event; Both the evaluation of the quality of the project outputs and the promotion of the project results.
– Workshop’s online web platform.
– To hold project introduction meetings with related institutions, to attend workshops, fairs and to open stands.
– To organize training seminars at the local and transnational level within the scope of the multiplier event.
– To prepare promotional brochures about project activities and results in order to increase the visibility in printed, visual and social media.
– To send and distribute digital outputs to the relevant institutions in printed and digital formats.
– Preparing scientific articles about project activities and results.
– To ensure that the project outputs and results affect the policies and programs to be developed in this regard through the Disaster and Emergency Management Authority (AFAD).
Source: https://ec.europa.eu/
Manual for parents of children with autism spectrum conditions and professionals in their circle of support
//PREFACE
Autism spectrum conditions continue intriguing the world as well as the domestic public due to its frequent occurrence, the uncertain mechanisms that prompt the conditions and, moreover, due to the lack of a unique treatment. Difficulties in the sphere of social development and the realization of interaction and communication with the environment are considered to be key vulnerabilities in autism. Difficulties in social functioning are the greatest factor that predicts the diagnosis and the forecast of the respective conditions. In the last decade, research has shown that these early deviations in social development contribute to the overall development of the child and its accommodation in the environment.
Our practical and theoretical experience denies the notion that children with autism are not social or that they have no strive for social interaction and communication. On the contrary, children with autism spectrum conditions often do not have the skills for an everyday social behaviour and these difficulties need to be recognized and implemented in a comprehensive individual program. Given the importance of the social interventions for children with autism, it is imperative for specialists and parents to have access to resources dedicated to social behaviour.
This manual offers you a variety of approaches, practices and evidence-based suggestions for parenting skills for children and youth with autism. However, it is important to point out that due to the heterogenous nature of the autism spectrum conditions, and regarding the parenting skills related to every child, there is no such thing as a unique approach. Therefore, this manual should be treated as a guide, having in mind the variability of success of a specific approach that depends on each child. Nevertheless, the principles described by the authors may be widely utilized and seen as useful for many families with children who have autism spectrum conditions. At the same time, this manual is a valuable tool that will be useful for different profiles of specialists included in the support of children as well as in their daily work. Apart from families, when making of the concept of this manual, we also had in mind the teachers, special educators and rehabilitators, speech therapists, psychologists, pedagogists, medical professionals, nursery caregivers, social workers, personal and education assistants as well as the future professionals, such as the students from the Institute for Special Education and Rehabilitation, and many other vocational profiles that will show their interest in this subject.
The manual “Supporting Social Skills and Positive Parenting” is the first such reading published in our country in three languages: Macedonian, English and Albanian. It covers 7 chapters which fully elaborate the curriculum for education of professionals and parents and the trainings realized in several public institutions of social protection and through a series of virtual workshops and webinars in the period from January to June 2020. The introductory part, which gives the basic characteristics of this pervasive condition, was prepared according to the material created by Prof. Dr. Vladimir Trajkovski, which was used for the needs of the trainings. The second chapter describes the developmental aspects of social skills and social communication and the most common challenges faced by children with autism. In the third chapter are given instructions for assessment of the socio-communication skills and the framework for intervention planning. The fourth chapter explains the evidence- based practices and types of approaches in teaching of this vulnerable category of children. These three chapters are formed according to the material used for the needs of the training and made by Ivana Vasilevska Petrovska, MA. In the fifth chapter, great attention is paid to the methods and tools for child support, including: organizational support, social support, communication support and behavioural support. The fifth chapter was prepared according to the materials made by Ivana Vasilevska Petrovska, MA and Prof. Dr. Vladimir Trajkovski which were used for the needs of the training.
Lately, our understanding of the great influence of sensory sensitivity on the conditions of the spectrum has increased, so this topic has been approached from a practical aspect in the sixth chapter which was prepared by Prof. Dr. Vladimir Trajkovski. Last but not least, the final segment deals with sexual development and sexuality education as inevitably related to the social behaviour of children. The seventh chapter is prepared according to the materials that were used for the needs of the trainings, made by Tanja Stankova, MA.
This manual contains numerous illustrations and examples of practices that will be of immense help to parents and specialists.
We express our gratitude to the reviewers Radmila Stojkovska Aleksova, MA and Irena Lozana for the remarks and valuable suggestions in the favour of bringing this manuscript closer to its esteemed readers. Many thanks to the staff of the UNICEF Office in Skopje and the Government of the United Kingdom for the financial support of this manual.
Skopje, July 2020
Authors
If you are interested you can download the manual for free HERE.
20 years of MSSA – Press Release
//Respected colleagues and friends,
It is my great honour and pleasure to announce that Macedonian Scientific Society for Autism is celebrating its 20th birthday today, May 22nd. This period was neither too long, nor too short. The societies that can say they’ve achieved such a jubilee are scarce. The previous years were filled with turbulence in the socio-political field in Macedonia and this has been reflected in the society’s work. The activities were filled with highs and lows. Many members have marched though the society, out of which only the most persistent remain to ensure the implementation of its goals and responsibilities, which are the following:
- primary prevention of persons with autism;
- investigation mechanisms connected with autism;
- investigation the effects of rehabilitation on the persons with autism;
- treatment of the persons with autism;
- cooperation with the parents of the children with autism;
- coordination of governmental and non governmental organizations dealing with autism;
- cooperation with international universities and associations whose priority is autism.
During these past years, we have demonstrated an equal position with other societies of this type in the EU, leadership in the field of special education and rehabilitation of autism spectrum disorders (ASD) in Macedonia and primarily care for health, education and social protection of this fragile category of citizens. In these 20 years we have tried to increase our citizens’ awareness about this topic and this is especially visible in the past 10 years through a spread of activities in which we have included stage stars, actors, athletes, scientists, politicians and naturally families with children or other family members that have ASD. For this purpose, we have held big events for WAAD April 2nd – four times. We have also organized five professional tribunes which treat not only ASD, but Down syndrome as well. We were organizers or co-organizers of nine seminars, symposia and conferences, most of which had international participants. During this period, 250 free diagnostic and consultative exams have been done on children with ASD. In 2002, the brochure „Chater for Persons with autism in Republic of Macedonia” was published and it was distributed to all 120 parliament members at the time.
From 2008 until 2017 MSSA was co-publisher of Journal of Special Education and Rehabilitation and since 2019, it is also co-publisher of the international Journal for ReAttach Therapy and Developmental Diversities (https://jrtdd.com), whose publisher is ReAttach International Therapy Foundation from the Netherlands.
Our members have participated in over 100 local and international seminars, congresses and conferences. We are authors of over 60 articles on the topic of autism and slightly less than 10 of these have been published in journals with impact factor. This gives a particular scientific impact to the society in the world of autismology.
Our members have participated in 15 local and international project, some of which are “Equity and social inclusion through positive parenting”, “A hollistic approach of person-centred planning for people with Autism”, “Autism Social Skills and Positive Parenting Programme” and “Autism Friendly Spaces”. The mentioned projects have been realized in the past five years and some are still ongoing.
In the past years two school books titled “Autism” and “Autism and pervasive developmental disorders”, which are mainly meant for the students at the Institute of Special Education and Rehabilitation and the Institute of Psychology at the Faculty of Philosophy in Skopje and can be used by medicine students, have been published.
MSSA is present on social media every day with popular posts about ASD meant to educate the general population about this complex disorder in our community.
MSSA was supposed to celebrate the 20 years’ existence jubilee with a big conference that was set to happen May 29-31 in co-organization with our partners “ReAttach International Therapy Foundation” from the Netherlands, but unfortunately it was cancelled due to the Covid-19 pandemic. There were going to be more than 150 guests from our country, from around 20 other European and Asian states and from the USA. Because of this, we have switched to an internet campaign fit to honour this jubilee. This campaign is being shared on a daily basis on MSSA’s blog, and the official social media profiles on Facebook, Twitter, LinkedIn and Instagram.
We as members of MSSA will continue working and discovering new cases of autism, we will keep creating new projects, write scientific articles, help parents and naturally children and persons with ASD in direction of improving their life quality.
Please find 20 years of MSSA – presentation in Prezi on the following LINK.
Stay safe and healthy!
Sincerely,
President of MSSA
Projects of MSSA
//Dear colleagues and readers,
In 20 years history MSSA realized 15 domestic and international projects. We want to put accent in last 5 years. In this period there are four projects from which someones are still ongoing. They are: “Equity and social inclusion through positive parenting”, “A hollistic approach of person-centred planning for people with Autism”, “Autism Social Skills and Positive Parenting Programme”, “Autism Friendly Spaces”.
President of MSSA
Articles in scientific journals
//Dear colleagues,
Members of MSSA have published over 60 articles in domestic and predominantly in international scientific journals. Less than 10 of them are in impact factor journals. With this we are giving small contribution to world scientific map. We will continued to work hard on promoting Macedonian autism special education and rehabilitation and medical aspects as well.
President of MSSA
Генерални активности на МНЗА во последните 20 години
//
MSSA – autism 9 webinars, 5 presenters, 5 moderators, 2 months
//
Cancellation 2nd Scientific ReAttach Conference 2020 in Skopje, Macedonia
//Dear colleagues,
We are sorry to inform you that we have decided to cancel the 2nd Scientific ReAttach Conference on May 29th-May30th, due to the coronavirus outbreak.
We will refund all conference tickets in the upcoming weeks.
Thank you for your enthusiasm for ReAttach and the overwhelming response and the warm welcome of the Macedonian Scientific Society of Autism as co-host of this event.
We especially thank all our invited presenters for their abstract submission. We intend to continue our international friendship. Of course, we will keep you informed about their papers that are coming up, future training, and events.
We would also like to draw your attention to our peer-reviewed academic journal that was founded under the inspiring leadership of Prof. Dr. Vladimir Trajkovski: Journal for ReAttach Therapy and Developmental Diversities. JRTDD is an open-access journal with a broad scope and a fantastic international editorial board. You can find it at https://jrtdd.com!
Yours sincerely,
ReAttach Therapy International Foundation
Drs. Paula Weerkamp-Bartholomeus, President
Macedonian Scientific Society for Autism
Prof. Dr. Vladimir Trajkovski, President