DAVID s STORY. the extra-ordinary life of a child with severe autism and ADHD. by Keith Wyncoll (David s father)

Transcription

1 Lorna Wing Research Autism Conference Autism with Learning Disabilities DAVID s STORY the extra-ordinary life of a child with severe autism and ADHD by Keith Wyncoll (David s father)

2 David s story - successes and challenges David 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

3 Meet the family

4 and the reality (sometimes)

5 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

6 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

7 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

8 Special schools in UK and Thailand Superb special school in Kent Autistic Research Center, Khon Kaen University, Northern Thailand (when on holiday)

9 Horse riding The Autistic Research Centre 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)

10 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

11 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

12 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

13 Water safety After pool scare Narelle took him to swimming lessons, weekly for two years Still no recognised stroke but he enjoys himself, safely

14 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

15 Other support David spoke his first word for six years at a MAGIC (Medway Autism Group & Info. Centre) playscheme Isolated single words since (usually a few months apart) networks of Kent Autistic Trust, CBF and the Kent Fathers Club helpful to keep in touch with news and developments

16 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

17 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!

18 Keith Wyncoll