SPEAKING UP are a group of year one BTEC PERFORMING ARTS Musical Theatre students from Richard Taunton Sixth Form College ranging from the ages of 16 to 18. The pieces devised are created by the group, inspiration and ideas come from extensive research and from personal experiences encountered within the theatre company. In our debut production 'Carly's Silence' that raises awareness about autism we have used the experiences of some members of the company who have had family members on the autistic spectrum. Later in this blog you can read Daniel's Diary, he is on the autistic spectrum and is the brother of one of our cast members.
As a collective student voice we feel that is its everyones right to be heard, SPEAKING UP on hard hitting issues to encourage equality and diversity within schools, allowing young people to become more aware of the world they live in as well as respecting their peers and everyones indifferences.
Our production titled 'Carly's Silence' looks into the life of the real life journey of an autistic girl called Carly Fleischmann who was continuously misdiagnosed until the age of 10.
We explored the autistic spectrum though teacher led workshops and extensive research to help us to fully try and understand the varying complexities of the autistic spectrum.
"We only have one life, its up to us as people to help everyone enjoy it to the full."
-SPEAKING UP
"You can have read all the books, spoken to many people and be 'classified' as an expert in the autistic field, the only real true experts are those who live and endure the condition, day by day. 24 hours a day, 365 days a year."
-Dr Hilra Vinha (taken from an interview conducted by SPEAKING UP)
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| SPEAKING UP theatre company in rehearsal |
AN INTERVIEW WITH DR HILRA VINHA
Dr Hilra Vinha currently works as a Consultant Researcher for the Open University in a project about the lives of people with learning disabilities
who live in supported residential care. She also works as Additional Educational Needs Coordinator at the Inspire Enterprise Academy, which is a business-focused secondary school in Southampton. She works supporting students who have learning difficulties. One of the cast members has a brother who attends this academy and so she made the initial contact with Dr Vinha to set up a Q & A session with SPEAKING UP to help gain a more accurate understanding of the autistic spectrum. Dr Vinha also brought along one of her students to assist her in answering some of our questions.
Hilra describes her student, who does not wish to be named, as very talkative with a good sense of humour. However, if he is in an unfamiliar environment, he finds hard to express himself, and may choose to not engage in conversation. Hence, during the Q&A the student only answered questions addressed to him directly by Dr Vinha because he did not know the group.
At Inspire, Hilra works in a dedicated area known in the school as the learning hub, where students can access support when they need. People in the autistic spectrum cope better with stable routines because they need to know what is happening next. If there is a set timetable, they expect it to be followed, any changes can upset them. For instance, it is hard for them to cope with changes that they are unprepared for. In these situations students can find the learning hub a known place to safely retire to, while adapting to the changes.
Dr Vinha does not claim to be an expert on autism, but someone who constantly dedicates time in learning about people with special needs. Her main advocacy is that students of all abilities are equal and have the right to education. SPEAKING UP questioned Hilra on indicators that a child or young person has autism.
Her response was:
The traits of autism are multiple and can differ from person to person, depending on where they are in the spectrum. Some children may show from an early age behaviours that are indicative of autism, which can lead to an early diagnosis. Other children may present traits that are less typical and as a consequence may end up getting a diagnosis in a later stage or even remain undiagnosed.
Hilra also discussed the situation when a young person does not get a statutory assessment or diagnosis during the early years.
Once a child has reached secondary education undiagnosed, an education psychologist can still refer the child for a statutory assessment. However, at this late stage, some parents feel desperate for answers and may not want to wait for a referral, or they may believe a referral will not be made, and they choose to go private, this though can be costly. Ideally, an early diagnosis would be made via a statutory assessment, then a statement of SEN and transition plan put in place before the child reaches secondary education. With the new EHC plan system in place the identification of needs and the establishment of the adequate provision is bound to become a more efficient process.
The statement was a document setting out a child’s special needs and any additional help that the child should receive. The aim of the Statement was to make sure that the child would get the right support to enable them to learn and make progress. Since September 2014, a new code of practice became in force and the statement process is now gradually being replaced by the EHC plan. Students who already had a statement will automatically move to an EHC plan. The full transition from the statement system to the new EHC must be completed by 2018. SEN Statements had been generally limited to the child’s time in the school. The EHC planning process will enable wider aspects of the child’s life to be embedded to the assessment and plan.
The National Autistic Society describes autism as a “lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them”; while Asperger’s, although considered under the umbrella of autism, “people with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language”.
Having a later diagnosis of autism may cause a lack of adequate support to meet the child’s needs, which in turn can affect their education and social skills. Typically, individuals in the spectrum lack understanding of unspoken social protocols. A young person displaying the condition might not look people in the eye, which can cause problems with teachers and other authorities. In some cases, an atypical behaviour could present the complete opposite and the young person will stare at people to the point the person can become either annoyed or quite uncomfortable. Some autistic children can imitate the behaviours of those around them so to behave in a more social manner. This can affect the time span of the diagnosis and therefore these individuals engage in society, formulate relationships, start families, sometimes with those around them unaware of their social difficulties as they learn to emulate in a normal social manner. Hilra mentioned to us a case where a man was not diagnosed until his 50s. During all his life he was seen as introvert, quiet and a loner. But because he was highly intelligent, and had a successful career no one ever made the connection between his behaviours and autism. After a belated diagnosis of Asperger’s syndrome, he was able to re-visit his relationships, especially with his children, and started seeking more meaningful interchanges with them, now aware of his difficulties with social interaction and communication. Knowing his diagnosis together with a new understanding of the condition allowed him to work on his difficulties. However, an early diagnosis would have been far more empowering and enabling to him.
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