{"id":6338,"date":"2024-04-01T05:00:30","date_gmt":"2024-04-01T02:00:30","guid":{"rendered":"https:\/\/ch.jfdi.cc\/?p=6338"},"modified":"2024-04-01T05:00:30","modified_gmt":"2024-04-01T02:00:30","slug":"the-good-the-bad-and-the-reality-of-autism","status":"publish","type":"post","link":"https:\/\/ch.jfdi.cc\/?p=6338","title":{"rendered":"The good, the bad and the reality of autism"},"content":{"rendered":"<p><strong>The very worst is the lack of integrated care for the over 21s<\/strong><\/p>\n<div class=\"cypru-video-ads\" id=\"cypru-708279553\">\n<div id=\"cypru-1607469536\" data-cypru-trackid=\"478051\" data-cypru-trackbid=\"1\" class=\"cypru-target\">\n<div id=\"gpt-ad-6656313213875-0\">\n<\/div>\n<\/div>\n<\/div>\n<p><strong>\u00a0<\/strong><strong>By Crissy Alexander<\/strong><br \/>\nApril 2 is coming up. Declared World Autism Day by the United Nations, it\u2019s aim is to create awareness of the needs of the autistic community around the world.<br \/>\nTalk to any family member of a person with autism, however, and they will usually roll their eyes.<br \/>\n\u201cEvery day is autism day in our world,\u201d is usually the first response. \u201cWhat about the other days of the year?\u201d is the likely second.<br \/>\nSpreading awareness is, of course, a good thing, but on April 2 as buildings in Cyprus \u201clight it up blue\u201d in solidarity (blue being the color of autism apparently) and events are held to mark the day, families of autistic people are screaming for to be heard.<br \/>\nResources in schools are inadequate, adult diagnoses impossible to get, health care professionals with autism expertise don\u2019t exist, the over 21s are in crisis, and there is a chronic lack of day programmes and supportive living facilities.<br \/>\nThere is, however, some good news. A landmark agenda is now being finalised to improve the lives of autistic people in Cyprus and it is hoped a five-year autism plan will be announced by the government shortly. The Department for Social Inclusion for People with Disabilities, under the social welfare deputy ministry, is leading the project and asked professionals, NGOs and stakeholders to participate to identify immediate needs.<\/p>\n<figure id=\"attachment_769972\" aria-describedby=\"caption-attachment-769972\" class=\"wp-caption alignnone\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-769972 size-full lazy\" src=\"http:\/\/ch.jfdi.cc\/wp-content\/uploads\/2024\/04\/the-good-the-bad-and-the-reality-of-autism.jpg\" alt=\"Family-run NGOs are setting up work and day programmes, advocating for social inclusion, and creating independent living opportunities\" width=\"1024\" height=\"768\" data-sizes=\"(max-width: 1024px) 100vw, 1024px\"><figcaption id=\"caption-attachment-769972\" class=\"wp-caption-text\">Family-run NGOs are setting up work and day programmes, advocating for social inclusion, and creating independent living opportunities<\/figcaption><\/figure>\n<p>The agenda includes collecting data on the number of autism cases in Cyprus, improving educational resources, addressing health challenges, independent and supportive living and supporting the creation of job programmes.<br \/>\nThis is, of course, good.<br \/>\nThe bad is that it took government this long to take note of the needs of the autistic population and if things don\u2019t move quickly a mental health crisis is ahead.<br \/>\nThere is no doubt autism is on the rise. Nursery schools on the island are reporting record numbers of young children on the spectrum. Educational provisions and early intervention programmes are, therefore, obviously a concern.<br \/>\nThe bad is also that educational resources are inadequate. Families are struggling as there is very little support at the secondary level and special schools are not appropriate placements for all on the spectrum.<br \/>\nThe stark reality is that over 21s with autism have little or no support. They leave school and enter a vacuum where there are no day programmes and no job opportunities and they stay at home with heightened frustrations and despair.<br \/>\n<strong>What is the government doing?<\/strong><br \/>\nThe autism community is placing hope on the autism agenda currently being finalised and the promise of a five-year plan.<br \/>\nIt is also placing hope on President Christodoulides\u2019 own pledge before being elected last year. He stated firmly that he was concerned about what happens to the over 21s who leave school and have nowhere to go.<br \/>\nPanayiotis Savvides is an activist and parent to two teenage boys on the autism spectrum.<br \/>\n\u201cFor the first time we have a president who understands the issues. He gets it. At one debate before the presidential elections last year he talked about inclusive education and what happens to the over 21s. It was not in answer to a debate question, he went there himself. Again, he gets it. But we are not seeing any serious initiatives on funding autism.<br \/>\n\u201cThe government funds the Christos Steliou Ioannou Foundation at 100 per cent \u2013 this is predominantly for the Downs Syndrome community and costs more than \u20ac2.5 million per year. But there has been no discussion on how the Christodoulides government will fund autism support.\u201d<br \/>\nThe president, says Savvides, is fully aware that the public school system fails autistic kids at every level. There is no expertise, no resources and little support. Many go to the special school because there is nothing else, not because it is a right fit.<br \/>\n\u201cThe special school, however, is a robust system of teachers and therapists which is well-funded and which can go till 4pm,\u201d says Savvides. \u201cThen your kid leaves school and this all falls away. Then there are very few options or there is nothing.\u201d<br \/>\nSavvides is planning to set up a day programme himself because there is no current one to meet the needs of his sons when they leave school.<\/p>\n<figure id=\"attachment_769975\" aria-describedby=\"caption-attachment-769975\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-769975 size-large lazy\" src=\"http:\/\/ch.jfdi.cc\/wp-content\/uploads\/2024\/04\/the-good-the-bad-and-the-reality-of-autism-1.jpg\" alt=\"one of the two houses for the over 21s with autism\" width=\"1024\" height=\"671\" data-sizes=\"(max-width: 1024px) 100vw, 1024px\"><figcaption id=\"caption-attachment-769975\" class=\"wp-caption-text\">One of the two houses for the over 21\u2019s with autism<\/figcaption><\/figure>\n<p>Parents like Savvides are taking matters into their own hands to secure a future for their kids. They are creating programmes, starting up NGOs and lobbying for change. But for every parent like Savvides, there are hundreds who cannot do this and wait for the government to act. The best they can hope for is government support for the parent-driven initiatives taking place around the island.<br \/>\nChriso\u00a0Prodromou, with other parents and friends, founded the NGO Autism Support Famagusta in 2013 and in 2019 started the Smile Project Day Centre for autistic young adults like her son Stephanos.<br \/>\nThe government helps\u00a0the Smile Project with 30 per cent of running costs, the rest is from community fundraisers and private donations. Obviously sustaining this is a huge challenge.<br \/>\n\u201cWe need 100 per cent support so we can focus on enrichment and expanding programmes and not on raising money,\u201d says Prodromou.<br \/>\nHer biggest challenge, however, are the medical issues that plague Stephanos and the lack of medical support available in Cyprus.<br \/>\n\u201cThe reality is there is a huge increase in autism cases and the needs are not being met,\u201d she says.<br \/>\n\u201cWe accept the autism diagnosis but want answers to why there are violent outbursts. Medical professionals tell us \u2018it\u2019s autism\u2019 but it\u2019s not the autism we are fighting every day, it\u2019s the self-harming behaviours.\u201d<br \/>\nShe says a tough day for Stephanos starts with \u201cbad noises\u201d which the whole family recognises and which then escalate until he starts hitting himself. This can last several days.<br \/>\n\u201cWe are alone with this,\u201d says Prodromou. \u201cMany families in Cyprus are alone with this.\u201d<br \/>\nShe says what is needed in Cyprus is a medical rule-out process. This means extensive testing to rule out all possible causes of health problems. It happens in other countries and involves a few days in a clinic with doctors who are familiar with the problems that often plague this community.<br \/>\nProdromou is part of the taskforce created to formulate a government autism agenda.<br \/>\nMeanwhile Stephanos attends the Smile Famagusta day programme that his family helped set up and has many happy, good, productive days.<br \/>\nObviously not all families can set up day programmes and all over the island families are desperate for help.<br \/>\nGeorge, aged 27, cannot find a day programme in Nicosia. He has been on a waiting list for five years. There are Georges all over the island. Nowhere to go, no youth clubs, no supportive job opportunities and their days are spent at home while the family juggles caregiving. Meanwhile their frustrations are heightened because they are bored.\u00a0 Behaviours escalate, they regress and the only resource is often medication.<br \/>\n\u201cIt\u2019s OK for the higher functioning kids,\u201d say Natasha who has a 28-year-old at home, \u201cbut what about the kids that need more support. Nobody wants them. My son has challenging behaviours but in a supportive environment with stimulation, mentors and expertise he could do so much. We are failing these kids. There are no experts at any level to help them.\u201d<\/p>\n<figure id=\"attachment_769973\" aria-describedby=\"caption-attachment-769973\" class=\"wp-caption alignnone\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-769973 size-large lazy\" src=\"http:\/\/ch.jfdi.cc\/wp-content\/uploads\/2024\/04\/the-good-the-bad-and-the-reality-of-autism-2.jpg\" alt=\"smile project autism support famagusta\" width=\"1024\" height=\"684\" data-sizes=\"(max-width: 1024px) 100vw, 1024px\"><figcaption id=\"caption-attachment-769973\" class=\"wp-caption-text\">Smile Project \u2013 Autism Support Famagusta<\/figcaption><\/figure>\n<p><strong>Education<\/strong><br \/>\nThe lack of qualified professionals is one of the largest issues families are facing. Nowhere is it more evident than at the secondary school level. There are no special education teachers at the secondary level in Cyprus schools. Parents are calling this a scandal and special education teachers on the island who can only work in elementary schools say they have been calling for reforms for over 20 years.<br \/>\nElena says her 13-year-old autistic son is high-functioning, verbal and can read and write, but the public school has nothing to offer him. No special education teacher, no qualified aides, no speech therapy. Her only option is a special school that takes kids of all disabilities, and she fears it will not fill the needs of her son who could thrive in any integrated school system with the right support.<br \/>\n\u201cWe are happy with the elementary school he is at. There is an individualised programme and there is qualified staff who can handle autism and work with autism. But then it stops. At the secondary level there is nothing.\u201d<br \/>\nOne special education teacher says the elementary schools are building something for their autistic students \u201cbut it\u2019s like we are building on sand \u2026 it all collapses when they go to secondary school. The system is failing them.\u201d<br \/>\nThe biggest issue for parents, however, is the future of their autistic children and their own ability to care for them as they age. There are very few homes for independent or supportive living.<br \/>\nThe NGO Voice for Autism has set up two such homes in Nicosia. Families and professionals came together to set up the NGO two years ago united in the belief that something had to happen for the over 21s.<br \/>\nThe two group homes are next to each other in the community and house six young men on the autism spectrum.<br \/>\n\u201cThere was simply nothing for my son,\u201d says Ellen Georgiou Pontikis, co-founder and president of Voice for Autism.<br \/>\n\u201cLouis was desperate to live independently. Like any other 27-year-old he wanted an independent life with friends and a community. Now he has it because a group of people stood up for him. But we are standing up for all the Louis\u2019s. So much more needs to be done.\u201d<br \/>\nOperating the group homes is made possible by the European Social Fund+ (ESF+), the Department for Social Inclusion of Persons with Disabilities and the Cyprus government.<br \/>\nVoice for Autism is a good model for government and an NGO working together to fill in a gap in civil society. But there continue to be huge gaps.<br \/>\n\u201cMy son is living his best life.\u201d says Pontikis. \u201cHe goes out, he\u2019s in a band, we are creating a job programme for him, and he has the supports he needs. This is the good side of things. The bad side of things are the daily challenges being faced by many families who are completely lost and the crisis that looms ahead for our population if things don\u2019t change.\u201d<br \/>\nPontikis says she is hopeful the current autism agenda will change the landscape in Cyprus for autistic people.<br \/>\n\u201cI think the government is taking us seriously and understands that improving the lives of autistic people is a priority. This new agenda will help us create a society that understands and includes autistic people in all stages of life. The time for autism in Cyprus is now.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The fact described in the text is that there is a lack of integrated care for individuals with autism over the age of 21.<\/p>\n","protected":false},"author":3,"featured_media":6339,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"Default","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[4],"tags":[862,4465,4039,924,2134,3348,1031,4326,2460,2511,3,3734,2369,946,181,405,153,203,3343,1543,2459,1742,304,2110,4081,250,3330,415,3216,210,2004,4407,1295,1823,4463,2796,387,3356,2628,3331,406,1012,4464,864,2405,3255,720,759,433,133,4409,3378,1358,1759,380,18],"class_list":["post-6338","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-cyprus","tag-age","tag-autism","tag-building","tag-buildings","tag-challenges","tag-change","tag-christodoulides","tag-clubs","tag-community","tag-costs","tag-cyprus","tag-cyprus-government","tag-data","tag-doctors","tag-donations","tag-education","tag-elections","tag-environment","tag-events","tag-famagusta","tag-family","tag-family-member","tag-funding","tag-funds","tag-future","tag-google","tag-google-news","tag-government","tag-government-support","tag-health","tag-health-problems","tag-hope","tag-inclusion","tag-increase","tag-integrated-care","tag-issues","tag-lost","tag-mental-health","tag-money","tag-news","tag-nicosia","tag-numbers","tag-over-21s","tag-population","tag-president-christodoulides","tag-reforms","tag-rest","tag-scandal","tag-school","tag-schools","tag-social-welfare","tag-students","tag-support","tag-united-nations","tag-us","tag-world"],"acf":{"keyphrase":"","keywords":"","sourceimg":"","country-category":""},"yoast_head":"<!-- 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