BRIDGING THE GAP: Joel's World
“I would be the opposite to everyone in a bad way”
People on the autistic spectrum can often feel social isolation. Growing up in the world that you don’t feel you fit into is a very real experience for many teenagers. However, for a child on the autistic spectrum, the world can be an especially scary space. Anna wanted to create awareness of some of the struggles Joel, who was diagnosed with autism aged seven, faces in his day-to-day life. Joel is funny, kind and an excellent author, using his immense creativity to write long novels inspired by his extraordinary imagination. As Joel makes a distinction between ‘his’ world and ‘our’ world, Anna began building this platform with an aim to try and help bridge the gap.
Five years ago, Caddie [dog] entered Joel's life which was a great turning point for him. Joel began to smile and communicate and develop social skills and he attributes Caddie’s companionship as the foundation for that. Joel doesn’t describe Caddie as an assistant dog, or even his best friend, Joel claims Caddie is his Guardian Angel.
A-U-T-I-S-M
“I knew deep down there was something wrong with my child”
Janet speaks candidly about the way she felt when Joel was diagnosed with autism. For many parents, it is a conflict of emotions - sadness and relief. When receiving that news, fear of the unknown comes into play due to the lack of understanding of that surrounds Autism. In addition, all autistic children are not the same; some progress faster than others. For Janet and the family, it was very much a learning experience. However, Janet believes that her other son, Hayden, who is a few years older than Joel, must have had Asperger's syndrome but never got diagnosed. She picked up some similarities between them both, so felt that she had a deeper understanding when it came to Joel. Janet mentions the difficulty she has accessing the support benefits Joel is entitled too, describing every year as a battle.
My World
"I couldn't live without you mum."
At times when Joel is unable to cope, he has many self calming methods to prevent him loosing control. One of these methods is pacing. He can pace back and forth for hours. Whilst he paces, he lets his imagination run wild. Joel has an extraordinary imagination which has allowed him to write many in depth novels. He states that he currently carries nine stories in his head, which has lead him to aspire to be an author. Joel was mute before Caddie, and up to the age of eleven he was barely able to write. He only portrayed stories through drawing in a comic style with stick men, until one day he began to write his own story. This was incredibly shocking for Joel's parents and teachers. Janet was left in disbelief when Joel presented such a high standard of writing skill at the age of eleven with no previous evidence. Joel's stories all develop within his imaginary world.
MUM
Joel's autism affects not only him but has had a huge impact on his family members. Joel and his family initially lived in Oxfordshire, but decided to make the move to Cornwall to benefit Joel. Janet is Joel's primary care giver, as his father Kevin works away from home most weekdays. She stays at home too care for Joel, as even when Joel is at school, Janet always waits for a phone call and is always on guard in case Joel has any problems. She is always having to think ahead of Joel, preempting how Joel may react to situations. When Caddie arrived in Joel's life, Janet realised the extent to which she would worry, after catching her reflection in a shop window she realised that it was the first time she was relaxed, when walking with Joel outside. Janet is incredibly understanding and a caring support for Joel. She states that she is able to keep such patience and hope as she takes one issue at a time. Each year, Janet makes one of Joel's struggles a priority to overcome, such as eating a new type of food, visiting new places or communicating in a more constructive way. Janet worries about what will happen to Joel when she and her husband are not around anymore. However, due to Joel's large family she is reassured that there will always be someone to look after him. Despite this, Janet is always worrying about the next step for Joel, especially as he will be approaching the end of school in two years time. Janet and Joel have created an incredibly strong bond where Joel's trust and strength lie within his mum; he always finds safety and peace when around her.
SCHOOL
Joel's mother, Janet believes that one of Joel’s biggest hurdles is the lack of awareness from other children at school. Joel's teachers struggle to deal with him occasionally, which can cause the use of unnecessary restraint, again singling him out. The statistics quoted by Autism.org supports Janet’s experience, stating that 34% of children on the spectrum say that the worst thing about being at school is being picked on and 63% are not in the kind of school their parents believe would best support them. In addition, 17% have been suspended from school; 48% of these having been suspended three or more times and 4% expelled from one or more schools. Within society, we have been oblivious to the needs of others like Joel. Whether it be subconscious or conscious, we tend to expect anyone in the minority to adapt to the majority's ways of working. This seems to be the crux of the issue and more effort needs be made in adapting the world to the people who are not able to adapt themselves. I believe this starts with educating ourselves, attempting to understand their perspective and using their voice. I hope this platform will help towards bridging this gap.
FAITH
Faith has been a big part of Joel’s journey, through the first few years of Joel’s life, Joel suffered with sleep apnea. This caused Joel’s family a lot of worry, especially his mum Janet. Not being a heavily religious person prior, Janet found her strength through the Christian faith which lead her to becoming a worship leader. Joel believes he needs God and Jesus by his side to give him all the help he can get.
WHAT IS AUTISM?
"Can't imagine how is would be without autism"
Joel attempts to explain autism, he states "can't imagine a world without autism". Joel lives with autism day in and day out, one of the most difficult aspect he expresses is the fact that some situations leave he feeling like he can't cope and resulting in him lashing out. In the past few years this feeling of being over whelmed with the world around him lead him to have physically reactions by collapsing. Leaving Janet worried that he has epilepsy however after recent test it is shown that it is Joel's body shuting down if his mind cannot cope. Joel struggles to express the way he feels and he began indicating to others using a traffic light system Green for good, amber for feeling uncomfortable and uneasy and finally red for not coping. Joel many fears of the unknown. He cannot watch the film without reading the dialogue and transcript before hand so he knows whats a head, he doesn't like crowds as he see's strangers as unpredictable and a threat in addition to Not wanting to try a type of new food but cause the chance of him not liking the taste or texture is too much of a risk. Joel will often face his fears, however everyday is a new challenge and it's a long process till the fear disappears.
TO OTHERS LIKE ME...
