Research Autism: David's Story

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 [email protected] 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!

Keith Wyncoll ([email protected]) 01474 329325