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Diagnosis – What Next??

Diagnosis – What Next??. David Williams, Cerebra. Diagnosis – a good thing?. Relief Fear Grief Blame So I’m not going mad then? What do I do now?. What now?. Learning to be a parent all over again Becoming the expert Who do I go to for help and information? Isolation

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Diagnosis – What Next??

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  1. Diagnosis – What Next?? David Williams, Cerebra

  2. Diagnosis – a good thing? • Relief • Fear • Grief • Blame So I’m not going mad then? What do I do now?

  3. What now? • Learning to be a parent all over again • Becoming the expert • Who do I go to for help and information? • Isolation • I thought the diagnosis would sort things out

  4. Diagnostic Labels • Asperger’s Syndrome • Atypical Autism • Autism • Childhood Autism • Childhood Disintegrative Disorder • High Functioning Autism • Hyperlexia • Kanner’s Autism • Mild Autism • Moderate Autism • Nonverbal Learning Disorder • Pathological Demand Avoidance Syndrome • PDD-NOS • Rett’s Syndrome • Severe Autism • Semantic-Pragmatic Disorder

  5. Understanding the Diagnosis ‘Well, Mr Williams, your son has Asperger’s Syndrome. I can recommend an excellent book by Tony Attwood..’ • Internet • Books • Support groups • Cerebra’s Regional Officers

  6. Education • IEPs • School Action • School Action Plus • Statementing • Which school? Barriers: ‘He’s really quiet at school’; ‘He’s an intelligent boy’; ‘He’s not severe enough to need help’; ‘He’s not actually disabled, is he?’

  7. Social Services • Mental health or learning difficulties? • Getting an assessment • Getting a social worker • Direct payments

  8. Social Security Benefits • Disability Living Allowance • Carer’s Allowance • Increases to other benefits Barriers: complexity of claim forms; stigma; negativity of claim form; lack of information; mis-information; lack of expert help

  9. Cerebra 10 Regional Officers – 1 in Wales, 9 in England • General information on condition and support after diagnosis • Completing benefit forms, tribunal representation • Help with all stages of SEN process • Assistance with getting help with social services

  10. 0800 32 81 159 Parent Help-Line

  11. Cerebra’s Parent Support

  12. Cerebra’s Parent Support Satellites Stress Counselling Sleep Service Portfolios Holiday House Sensory Toys Grants Wills & Trusts vouchers Speech Therapy Vouchers

  13. Any more questions?

  14. Thanks for coming! David Williams Parent Support Cerebra

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