Stratford youth was silenced by rare autism condition
“MY son can verbalise, what he can’t do is speak.”
The heartbreaking words of a mother who’s highly intelligent son, George, aged 17, is just like any other teenager except George is living with a rare form of autism known as Bainbridge–Ropers Syndrome (BRPS).
It’s been a long journey for Emma Bond and her husband Richard from Stratford to finally track down what the exact cause of their son’s condition was but the family – including George’s sisters, Scarlett, 21 and Lilla, 24 – prayed for the day when George would speak and share his world with them which they knew he was more than capable of doing but he was trapped.
“I knew with George from six weeks something was different,” Emma told the Herald. “He was floppy and vacant and there was little bonding. He seemed to be showing autistic traits but we wouldn’t finally know until he was here. He was coloured grey which having had two previous babies I knew wasn’t good.”
George couldn’t walk until he was five or six and needed a frame to support himself but now he loves walking and last year there was a major milestone in his life when he started to run for the first time.
But the genetic condition George has is rare and results from a change in function of a gene called ASXL3. It’s estimated there are approximately 300 people diagnosed in the world diagnosed with BRPS but many more who remain undiagnosed. The condition was discovered in 2013.
George is a highly intelligent person with an advanced political intellect and he’s even taught himself Mandarin.
“We didn’t think he could read but he taught himself to do so using subtitles on the television. The Mandarin was a complete surprise. Every time I went to switch on my iPad the language was Chinese and I thought George had pressed the wrong button by mistake but he was actually teaching himself Mandarin and he was still a young boy. He’s got a good understanding of it now because he follows the patterns of the words,” Emma said.
She describes her son as a very social boy who is educated at Welcombe Hills School and loves to meet new people but whereas someone who doesn’t have his condition will manage their motors even though they might be pleased or delight to see someone, George doesn’t have that management so he will be very excited and welcoming when he makes a new friend.
But then there was a breakthrough when Emma and Richard read Underestimated: An Autism Miracleby J. B. Handley and Jamison Handley which opened up a whole new chapter in George’s life and the family were quick to make contact with experts in the United States to pursue ta learning method called Spelling to Communicate or S”C and letter boards which enables George to point at a stencil with the alphabet on it and he’s been using it since April 2022.
Emma said: “It was a magical moment because he became a speller. It was a relief for George because he now knows that we know what his condition is and I talk to him like a I would any other teenager. He was asked what his watershed book would be called and he replied So Much to Say. A short film about George’s journey has been produced by George’s cousin Mac Sainsbury-Plaice is from Exhall and is called So Much to Say – A Spellers Story and it features a voice over expressing George’s thoughts about life.”
George is now involved with key cognitive research at Cambridge University to help find out more about his rare condition in the hope that some sort of resolution or even a solution can be found for himself and others.
In the video made by his cousin, George says he loves travel and wants to explore the world. He admits he’s a cheeky chap and would encourage his fellow autism spellers to never never underestimate anyone.
He’s also a big fan of the RSC and enjoys the opera, classic music and the Proms.
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There will be a special screening of a new film called SPELLERS the Movie on
Thursday, 14th September at Bridge House Theatre, Warwick School, Myton Rd, Warwick, CV34 6PP.
Schedule:
4.45 pm: Arrival
5.pm: Introduction
5.15pm: Movie Viewing
6.45pm: Interval
7.pm to 7.45pm: Q&A Panel
What is Bainbridge–Ropers syndrome?
A rare, genetic, syndromic intellectual disability disorder with a variable phenotypic presentation typically characterized by microcephaly, severe feeding difficulties, failure to thrive, severe global development delay that frequently results in absent/poor speech, moderate to severe intellectual disability and hypotonia. Distinctive craniofacial features include prominent forehead, high-arched, thin eyebrows, hypertelorism, downslanting palpebral fissures, long, tubular nose with broad tip and prominent nasal bridge and wide mouth with full, everted lower lip. Joint laxity and ulnar deviation of wrists are also frequently observed.
The condition is not hereditary.
