APA Newsletter Issue 22
Autism Parents Association
A message from Omar
Inside this issue:
Dear Parents, Trust you are well. Another exciting issue of our newsletter awaits you and as expected a lot has happened since we sent out the previous
publication. Our team of dedicated volunteers are constantly engaged with various entities, companies and organisations to make sure APA stands above the
fold and ensures a greater service in support and innovation. In this issue you will find highlights on the activities carried out over the past couple
Autism and the Theory of Mind/an inside view of Autism
of months especially the concentrated efforts we've done during the autism awareness month which includes the Light it Up Blue event at the Cittadella in Gozo and much more. We are also very proud with the launch of our "Parents Handbook" which you'll find outlined in the following pages and would like to take this opportunity to remind all those who haven't received a copy yet to contact one of our committee members for
A Guide for Parents and Carers
your FREE copy. May we take this opportunity to wish "Good Luck" to all the kids for the upcoming exams and a merited summer break afterword’s.
Book Review UOM Regulations
Best wishes from all of us at APA. Thanks and as we say “Help us help you.”
Omar Farrugia President - APA.
Past Events April is the busiest month of the year for the APA committee. APAâ€™s attendance at the Light it Up Blue event was the first activity for this month. For the fourth year running The Marigold Foundation has joined Autism Speaks in their annual Light It Up blue global campaign. The national buildings lit up blue so far have been Castille for the first year, then the Mediterranean Conference Centre and the Houses of Parliament last year. This year the Cittadella in Victoria has been lit up blue to raise more awareness about Autism. The Foundation's ongoing support towards the Autism Parents' Association and all those on the Autism spectrum together with their families continues to grow. This year the foundation has also joined Autism Europe in their current campaign Breaking Barriers for Autism. All those who attended the event at the Cittadella participated in breaking down existing barriers, albeit symbolically, for a better society. Together the aim is for Respect, Acceptance and Inclusion for a kinder society which provides support for those who need it the most.
APA President Omar Farrugia addressing those present at the LIUB event in Gozo
A yearly appointment is the Autism Walk organized by APA with the aim of promoting awareness about Autism. A special thank you to all those who attended and to Mrs Muscat for supporting this event.
Another important event on the APA April Autism Awareness month calendar is the Fun day, which this year was held at Villa Francia in Lija. The day started early on the 29 th April for the APA Committee who were all involved in the organization of this event, and by the time the parents started arriving we were ready to start our Annual General Meeting and welcome the little ones in this beautiful garden. During the AGM, the APA committee had the opportunity to inform the parents about what had been achieved during 2016, including information about committee members and their responsibilities within APA, an overview of the events held in 2016, the launch of the new logo and the guide for parents, past and future projects that APA is responsible for and the financial report for 2016. The proposed committee members and APA committee structure for 2017 was also shared. Throughout the rest of the day the children enjoyed a Bouncy castle, free treats, games and entertainment by Hufflehuff, Sensory storytelling, and a Rhythm session by Tribali. Whilst the children had fun the parents had an opportunity to access information from a number of service providers who were present throughout the duration of the Fun day.
APA would like to thank firstly the parent who attended the event and the committee members who work tirelessly to make this day possible. A special thank you goes to Mrs Michelle Muscat who is always willing to support APA, and the Marigold foundation. We would also like to thank also the National Literacy Agency for providing the resources used during the storytelling sessions and the following sponsors for helping us by providing food and drink: Helena Sammut, Sweet joy Malta, Raisa Muscat, Sisters of St Joseph, Malcolm Sant at Gallarija Fgura, Nestle and the Petshop.
Autism Awareness Month Educational Talks As part of an effort to promote Autism Awareness and Education, during the month of April APA committee member Valerie Brincat gave talks to the parents of Tarxien Primary School; and another one for the children at Attard Primary School. Both schools wore blue for Autism Awareness on the day.
APA representative Carmen Abela has given a talk to students in Sliema. She explained to the children about Autism and showed a short video to help them understand better this condition. Children from Year 1 up to Year 6 attended this event. Carmen has patiently answered their questions and gave hints as to how they can support their own friends who have Autism.
Committee member Valerie Brincat addressing students and teachers at Attard Primary School
Annual General Assembly 2017 and Council of Administration APA President Omar Farrugia has attended the Autism-Europe (AE) General Assembly and Council of Administration meetings which were held in Zagreb on May 6 and 7, 2017. The meetings, attended by more than 60 members of AE, were hosted by the Croatian Union of Associations for Autism- CUAA and were accompanied by a study visit to the village of Mostari in the outskirts of Zagreb. There, participants visited a housing community for persons who have Autism. Furthermore, AE members had the opportunity to meet with local and national policy makers and other stakeholders representing the City of Zagreb and UNICEF.
Omar Farrugia with representatives from Iceland and Norway
At these meetings, representatives of European autism organisations gathered to discuss and vote on issues related to AE’s activities and membership. Highlights of the meetings included the welcome to two new members associations Autismo Sevilla (Spain) and Fondazione Il Domani dell’Autismo ONLUS (Italy), updates about the projects and platforms in which AE is involved, discussions about the next Autism-Europe’s Congress in Nice in 2019 or the presentation of an Education Equality Project, to support autistic people to obtain higher education and increasing their life quality and accessibility to employment.
f5 Magazine Launch A group of Third year Communications Students from the Faculty of Media and Knowledge Sciences at the University of Malta, are publishing a magazine called f5, as part of one of their study units. APA committee member Sandra Borg was invited by the f5 team for the f5 Magazine launch. Sandra explained that it was an honour to attend the launch and on behalf of the Autism Parents Association wishes all the students the very best for their future. Special thanks go to the f5 Magazine team, as they will be donating excess funds from this project to APA for the future launch of our publication of the Autism Guide in Maltese.
Sandra Borg sharing publications with the f5 Magazine team at the launch
Educational talks for Students and meetings with other NGOs Following a Personal and Social Development lesson focused on Autism, Committee member Emma McEwen visited all the Grade 5 students in San Anton School to answer the students’ questions on this topic.
Emma Mc Ewen at San Anton School
On another occasion, Emma has also met with other NGOs to discuss how they can work better together in order to provide a better service for children and their parents.
Meeting with the Ministry of Family and Social Solidarity APA representative Valerie Brincat has attended a meeting with the Ministry of Family and Social Solidarity to discuss concerns regarding the Disability Pension. Present for this meeting were also the president of the Down Syndrome Association Joeanna Xerri and Rodha Garland from CRPD. The issues considered to be important by those attending the meeting included the validity of the Barthel index as a measure of the needs of a person with a disability, when being considered for a disability pension. The Ministry was also asked to consider if there is a need for a Psychological Report every two years and was asked to keep in mind that this is an added expense for our families. In addition, the participants have also suggested that parents who are forced to leave work and remain at home to look after children who are severely impaired should be considered for receiving a supplementary allowance so as to partly compensate for not being able to work.
Jien wasalt … inti wasalt?
St. Thomas More College have recently invited APA to attend their public discussion regarding Inclusive practices in their middle school in Tarxien. APA representative Maruska Dimech attended this event. The programme for the morning included a description of Autism and how this effects learning and the child’s educational experience. The focus of the second part of the event was on the ‘Independent Living Skills Programme’ which is offered to students who have Autism in this school. This programme includes Numeracy, Literacy and Independent Skills practice and is planned individually for each student according to one’s specific needs. The staff explained that the child’s needs are addressed through practical day to day skills such as cookery, gardening and exposure to different experiences in the community.
Volume 1, Issue 1
What’s next? Our next fundraising initiative involves the sale of hand knitted toys kindly donated by our APA friends, Theresa Zammit Tabona and Pam Graham.
“Ellie and Peter have 15 special friends. Each of their friends has a name, each is unique and hand knitted. Each friend has a pouch to stow a gift / your sunglasses / jewels / whatever you wish. These are very special friends as they support the Autism Parents Association. Each friend costs € 18.00. Ellie and Peter’s friends will soon be available solely on Kekstor.com until they find their homes.” Ellie & Peter’s friends will help to raise awareness about Autism and are not designed as toys for young children. APA would like to thank Theresa Zammit Tabona, Pam Graham and Alexia Bannister for selling the toys via her website Kekstor.com.
Training for Police first responders Following the Autism Congress held in Edinburgh, APA reached out to the director of the Police Academy in Malta. Several concerns with regards to whether local first responders are aware of the communication levels and difficulties of individuals with Autism where discussed. APA has agreed with the Police Academy to initiate a train the trainer Programme on Autism. APA got in touch with Autism Hampshire who have already organized training to first responders in Hampshire and a plan of action is currently being developed.
MCAST creating an Autism friendly environment: April 2017— June 2018
APA together with MCAST came to an agreement to work towards MCAST becoming a more friendly environment for students who have Autism. There are presently 63 students on the Autism Spectrum attending MCAST. A meeting with MCAST top management was held to explain what it feels like to have Autism and the proposed plan was approved. Adaptations to create an Autism friendly environment will be implemented, training for staff will be organized and a printed guideline will be available to all members of staff at MCAST.
Autism and the theory of mind: An adult with Autism shares her perspective
Dr. Catharine Alvarez an adult on the autism spectrum shares her perspective on Autism and the Theory of mind. We hear primarily about children and teens with autism, and it's so important to hear the voices of adults who experience autism themselves. Dr Alvarez is a mathematician and founder of Math Wizard, student of psychology, blogger, and a homeschooling parent of two kids. “Yes, there is a persistent and negative view of autistic people not having a Theory of mind, in the sense of not understanding that other people have minds and may see things from a different perspective than we do. My own experience, and that of many other autistic people, is that we do understand that other people have different perspectives. However, we can be stumped when we try to determine someone else's perspective because of difficulties with social communication. There is a difference between not knowing that other people have minds and not being able to figure out what might be in their minds. Saying autistic people lack "Theory of mind" tends to be a hot-button for people especially because it has led some to conclude that autistic people lack empathy. I have also not found that Autistics lack empathy. If they know that someone is hurting, they certainly can and do feel empathy for that person. However, there are some barriers to expressing empathy. Knowing someone is hurting may be so emotionally disorganizing to an autistic person that they are unable to figure out the needs of the hurting person or try to tend to them. Also, the usual nonverbal signals that "I am hurting" may not be understood by an autistic person. I find that autistic people are generally capable of empathy, although this is not universal. Of course, empathy is not universal among non-autistic people either. In other words, lack of empathy is not a defining feature of autism.”
“In other words, lack of empathy is not a defining feature of Autism.”
Adapted from: www.psychologytoday.com
An inside view of Autism
Naoki Higashida is a 13-year-old boy from Japan who writes about what it is like to live with Autism.
Mary Temple Grandin is an American professor of animal science at Colorado State University, consultant to the livestock industry on animal behavior, and an Autism spokesperson. She has Autism.
Carly Fleishmann was diagnosed with Autism, Oral-motor apraxia and cognitive delay as a child. Through years of persistent therapy and hard work, Carly learned to spell and her voice eventually found its way out. Today she types with one finger, and shares the truths and mysteries (as she calls it) of Autism.
IT’S ALWAYS WORTH A TRY by Janet Silvio - Executive Director, HILA Homes Ltd.
Working with persons with Autism may be a challenge at times but it’s mostly a search and discovery experience. Even though reading, researching and studying about Autism helps in understanding the condition and the different levels in the spectrum, I believe that theory is just a stepping stone in opening the door to these persons’ lives. Let’s start with the fact that every person falling under the spectrum is an individual: with his/her character, likes and dislikes, moods and fears. It is vital to acknowledge this first and foremost, and not see the disability before the person, as if one takes this approach, it’s easier to understand the person. One particular story I would like to share happened a few days ago. We might feel unease or afraid of taking someone with Autism to particular events as the unknown is always difficult to deal with. The thing is that you never know how someone will react to a situation until you try. When we were on the bus everything went smooth until it was time to get down and enter the concert hall. Meredith* did not want to move from her seat and trying to make her do it would only aggravate matters. Knowing Meredith we knew we had to let her be. When we waved goodbye to her, telling her we were leaving, she walked down the bus on her own accord. Attending to a classical concert might be an unsafe bet for most, but knowing from Meredith’s mother that she likes music, we felt she should be there together with the rest of the group. Throughout the concert it was fascinating watching Meredith enjoying the music, in complete silence, and mind you she is very active in other circumstances, so it was very clear that she was at ease and happy. At one point I saw Meredith turn and look at the drink bar insistently. Knowing that she does occasionally sprint out and grab for others’ drinks, I poured her a glass of water and offered it to her. Even though she refused it, when I took back the cup, she looked at me and smiled naughtily, as if she wanted to tell me “Hey, you knew what I was about to do”. She then accepted the water on a second try. This short instance taught me two things. One that it’s always worth giving someone a chance, and well, if it doesn’t work out, at least you give it a try. Secondly, learning to know the person, irrespective of disability or not, is always the key to build a relationship of trust. *fictitious name was used for the story
A Guide for Parents and Carers APA is extremely pleased to launch Malta’s first guide to Autism “Autism: A Guide for Parents and Carers Following Diagnosis. This initiative was born from parents getting in touch and asking APA and other parents in the support forum for advice on how to handle their child, what therapies are offered here in Malta and what social services were available. The guide was developed by parents for parents and provides an overview of Autism, guidance on how to cope in the early years, the services offered locally and the benefits one can avail from. The project was funded solely by the Small Initiative Support Scheme (SIS) awarded by the Malta Council for the Voluntary Sector. A fellow Autism association in Wales granted APA permission to use the text from their guide. APA then wrote the sections on Education, Social Services and gathered information on the services providers in Malta. EC Language Schools, very kindly, created the design of the guide so that the funds were spent purely on the printing of the guides. From the original aim of printing 100 copies we had the funds to print 500 copies. We are therefore delighted to offer a guide to every APA member. The guidebook is also available on our website and on DVD.
The next step is to raise funds to translate this book in Maltese. This started in March this year when Emma McEwen, a board member, and Sandra Peyre raised funds by running the Malta Half Marathon. In addition, on the 6th of May 4 athletes, Patrick Tabone, Italo Bonnici, Tiziana Bonnici and Jason Greenaway took part in the Hellfire ‘Gozo 50km trail run’, to help APA raise more funds for this project. Additionally, Vibe FM are kindly airing adverts both in English and Maltese on the radio and Vodafone have given us the ability to receive donations by SMS. APA keep promoting through their facebook page and have a campaign on ZAAR, a crowd funding platform.
A special thank you goes to all the above mentioned and to our members who have helped to spread awareness and to support APA in all its initiatives and events.
Thank you! Thank you! Thank you! Thank you! From the
Autism Parents Association
Volume 1, Issue 1
Book Review In this issue we would like to share with you a series of books recommended by our parent member Isabelle Magri. ‘The Care and Keeping of YOU’ is a best-selling body book for girls,. It includes illustrations and updated content for girls ages 8 and up, it features tips, how-tos, and facts from the experts. (Medical consultant: Cara Natterson, MD.) You'll find answers to questions about your changing body, from hair care to healthy eating, bad breath to bras, periods to pimples, and everything in between. Once you feel comfortable with what's happening, you'll be ready to move on to the ‘The Care & Keeping of You 2!’ Thank you Isabelle for your contribution!
University of Malta Regulations The University of Malta has approved a change in regulations that will facilitate admission of applicants who are not in possession of all the qualifications at SEC Level as a result of conditions falling within the Autism Spectrum and of applicants with other recognised Specific Learning Difficulties. The University’s Access Disability Support Committee has long made special arrangements available for students with a disability during Matsec examinations, during their post-secondary studies at Junior College and at University. Senate has now approved possible eligibility for applicants with these conditions, who are missing a particular subject at SEC level, compulsory for admission to undergraduate courses at the University of Malta. As Malta’s leading tertiary institution, the University strives to be an all-inclusive organisation that provides the opportunity to students with Specific Learning difficulties to progress with their post-secondary studies. This new regulation is being introduced on the premise that the missing qualification is not a subject which is a requirement for the programme of studies which the applicant would be pursuing. While facilitating admission, the new regulation ensures that applicants claiming exemption due to significant disability will not be adversely impacted during their course of study. Given the specific nature of such cases, the University will be considering each application on its own merits. With a student population of just under 12,000 and more than 730 undergraduate and postgraduate courses on offer, the University of Malta is confident that this special provision will lead more applicants with learning difficulties to read for a tertiary level qualification. These regulations are applicable for admission to courses commencing this October.
Adapted from: www.pressreader.com/malta/the-malta-business-weekly
Autism Parent’s Association
Visit our WEBSITE! www.autismparentsassociation.com
P.O. Box 30 Marsa
OR Find us on facebook
Parents with lots of experience and brilliant ideas are ready to answer your questions!!
Mob: + 356 7928 5438
Memberships For those of you who haven’t sent in their renewal or if you would like to become a new member, we kindly ask you to fill the application form (www.autismparentsassociation.com) and send it to the address noted in the form together with €10 for your membership. All money collected from memberships and donations received go towards the Association’s expenses, which include the printing of leaflets and the organization of activities for parents and children. Financial statements, outlining all income and expenses for the past years will be presented at the Annual General Meeting, and published on the APA website.
Contacts: Parent Support Aides Autism: (General)
Ms Valerie Brincat
Autism: 0 –8 years
Ms Carmen Abela
Ms Maruska Dimech
Ms Alexandra Borg
9942 7839 (After 5pm)
Ms Joanne Sciberras