Research Autism: David's Story
Post on 02-Apr-2016
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Lorna Wing Research Autism Conference “Autism with Learning Disabilities”
DAVID’s STORY The extraordinary life of a child with severe Autism and ADHD
by Keith Wyncoll (David’s father)
David’s story - successes and challengesDavid has severe Autism and ADHD- is non-verbal- doubly incontinent- sleeps poorly- but is vibrant, handsome and affectionate
Challenges:- dealing with acute sensory difficulties- battles to access services- family and social impact
Successes: - Direct Payment & positive proactive strategies = a good life for David
Meet the family
and the reality(sometimes)
Birth to 13 months…
David had a difficult birth:his first year appeared to be ‘normal’ he was a quiet child but could speak 20 words
Turkish holiday (13 months)…David was very ill:- high fever- injection at local clinic- well in five minutes!
Over the next two months:- short attention span- lost all language- sensory intolerance- jumping and flapping arms
Diagnosis of Autism at 18 months
Onset of Autism…
We were confused as parents – didn’t know where to turn Went to ‘Early Bird’ training sessions, good to meet other parents
Limited information or wrong info from professionals
Special schools in UK and Thailand…
• Superb special school in Kent.
• Autistic Research Center, Khon Kaen University, Northern Thailand (when on holiday).
Horse riding… The ‘Autistic Research Center’ work with army riding instructors to instil confidence and to help children build relationships with horses and elephants in Thailand (the camel was in Morocco)
Social impact…• Jumping and disturbed nights
• Motability car ‘keyed’
• Many services don’t understand Autism
• David has no sense of danger
• Was assaulted by a respite “care worker”
Link family…• Social Services suggested a
‘Link Family’
• Narelle Cox later continued as Direct Payment carer
• Highly flexible, individual arrangement - particularly suited to children who find group activities difficult
Running into water…David loves the sensory sensation of being in water
He will run fully clothed into swimming pools, water features
In Thailand, he ran away. Searched for 30 minutes, found him in neighbour’s pool – thankfully he didn’t drown
Water safety…After pool scare – Narelle took him to swimming lessons, weekly for two years Still no recognised stroke but he enjoys himself, safely
Chips…
Feeding has always been a challenge – slightly easier now
David loves chips - they have to be thin ‘French fries’
At home, he put his hand into the chip pan
At Istanbul Airport, he ran away – to find chips
Other support…David spoke his first word for six years at a MAGIC (Medway Autism Group & Information Centre) playscheme in Kent
Isolated single words since (usually a few months apart) Email networks of Kent Autistic Trust, CBF and the Kent Fathers’ Club helpful to keep in touch with news and developments
Medway Autism Group Information Centre MAGIC) is a Medway-based charitable organisation providing a range of activities and events to support families living with autism, Asperger's and other learning difficulties.
http://medway-magic.org office@medway-magic.org 01634 570706
Other support & sharing…
Went to Challenging Behaviour Foundation training at David’s school
I’ve since become a trainer for CBF and have travelled all over UK sharing strategies with family carers and professionals
Am on N.I.C.E. Guideline Development Group (Learning Disabilities & Challenging Behaviour) and NHS England Patient & Public Voice Assurance Group
Conclusion…Life is still tough (we have been sleep deprived for seven years); and far from predictable
With Direct Payment support, David has a rich, fulfilling time
His social life is superb - now stars on national publications and websites!
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