david williams, cerebra. relief fear grief blame so i’m not going mad then? what do i do now?

Diagnosis – What Next??

David Williams, Cerebra

• Relief• Fear• Grief• Blame

So I’m not going mad then?

What do I do now?

Diagnosis – a good thing?

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

What now?

Diagnostic LabelsAsperger’s SyndromeAtypical AutismAutismChildhood AutismChildhood Disintegrative DisorderHigh Functioning AutismHyperlexiaKanner’s AutismMild Autism

Moderate AutismNonverbal Learning DisorderPathological Demand Avoidance SyndromePDD-NOSRett’s SyndromeSevere AutismSemantic-Pragmatic Disorder

‘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

Understanding the Diagnosis

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?’

Education

Mental health or learning difficulties?

Getting an assessment

Getting a social worker

Direct payments

Social Services

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

Social Security Benefits

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

Cerebra

Parent Help-Line

0800 32 81 159

Cerebra’s Parent Support

Support InformationParent to

parent contact

Quarterly bulletin

Postal lending library

Days Out

E-learningNews & events Signposting

11

Cerebra’s Parent Support

12

Speech Therapy Vouchers

Wills & Trusts

vouchers

Grants

Sensory

Toys

Holiday House

Portfolios

Sleep

Service

Stress CounsellingSatellites

Any more questions?Any more

questions?

Thanks for coming!

David WilliamsParent Support

Cerebra