The help! programme - a message from 9000 families Alan Carman and Andrew Powell NAS Support Programmes Team

Issues to discuss What is the NAS help! programme? Evaluation of help! Autism – state of the nation Suggestions to professionals

help! Programme Information, advice and support for parents and carers of children who have a diagnosis of an autism spectrum disorder.

help! Programme In 2001 there was one staff member 7 years later there are about 38 staff directly involved in running help! programmes nationally In 2002 about 40 parents received the programme In 2008 about 4000 parents will attend a programme or seminar It is the largest face to face service that National Autistic Society staff provide

help! Programme content Introductions and experiences of diagnosis What is ASD? Communication Behaviour Education Support and Benefits Run over 1,2,3 or 6 days

help! 2 seminars Seminars aimed at parents who have some basic understanding of ASD Seminars last 4 hours and cover more in-depth topics

help! 2 seminars Writing Social Stories TM Supporting Siblings Managing anger in adolescents with Asperger syndrome

Anti-BullyingAdult life Meeting your child’s sensory needs help! 2 seminars

Example of help! resource library

How do I feel? Time Example from Communication session…

help! 2 seminar on Managing anger… Dear Marge My son is 16. He has AS and often punches his sister. This occurs mostly after school, but seems to happen at any time. She is 12 and has started to really dislike him. She cannot bring her mates home because she is embarrassed of him. What can I do? Yours sincerely Mrs Jones

help! 2 seminar on Managing anger… Low arousal communication Relaxation Safe expression Emotional understanding Siblings education and support Local authority assessment CAMHS involvement

Evaluation Evaluation of help! Programme completed in collaboration with Prof Tony Bailey Oxford University ‘Has the programme increased your knowledge of ASDs?’ 94% of parents said yes at end of programme 89% of parents said yes 12 months later ‘Positive effect on communicating with your child?’ 78% of parents said yes at end of programme 91% of parents said yes even after 12 months

Evaluation ‘Has the programme enabled you to deal more effectively with your son/daughter’s behaviour difficulties?’ 68% of parents said yes at end of programme 70% of parents said yes even after 12 months

The benefits! Meeting other parents and experienced staff ‘Sharing our most difficult times with people who understand and offer solutions without patronising us or implying that things aren’t as bad as we say’

‘I learnt more in this last 6 weeks than in 2 years of reading all the books and surfing the net’ The benefits! ‘It has helped me as a parent not to feel like it has been all my fault, has helped me to be more understanding and tackle things better. I never realised the things he did come under this spectrum.’ Increased understanding of ASD

‘A whole new world has opened up for us now. I feel as though I don’t need to fear the future because THERE’S HELP OUT THERE. Thank you very much’ The benefits! Provides hope and optimism

‘I have learnt more from this programme than from a three week intensive programme I attended in the States that cost the earth’ The benefits! Cost effective

‘The “drawing your child” activity made me cry all night when I got home, but only because it made me realise how much I love Sarah and that I wouldn’t change her for the world.’ The benefits! Positive feelings

State of the nation % of children receive Disability Living Allowance 15% of families receive social services support 36% of children have a Statement of special educational needs (n = 398)

State of the nation For children who get diagnosed under the age of 7 (average age at diagnosis on programmes is 6.5 years)… …it takes 3.5 years to get a diagnosis from the date when a professional first alerted (or was alerted) to possible atypical development (n = 244)

Diagnosis - state of the nation Process of diagnosis often confusing and a source of anger Diagnosis takes about 3 years for primary children Little post diagnosis information

Diagnosis - suggestions Listen to parents early concerns Training needed at pre-school stage to recognise red flags for ASD at playgroup, nursery Provide action plan after diagnosis

Schools - state of the nation Things improving, but slowly Most educational staff do not receive training in understanding ASDs Many senior staff don’t see a need to make reasonable adjustment for pupils Bullying - the norm in mainstream schools

Schools - suggestions Train staff and make sure training is carried out by those who understand pressures on teachers Make simple adjustments to allow ASD pupils to get an education Be open about ASDs; educate other pupils

Social services - state of the nation Difficulty getting an assessment Most common response after a social worker had visited: ‘we never heard from them again’ Few services available Most staff and services have limited skills in working with people who have ASD

Social services - suggestions Training for staff Dedicated ASD workers Out of school clubs, befriending schemes, social groups One to one support takes time for difficult individuals

Parents - state of the nation Isolation Confidence often dented Hard to implement strategies when under chronic stress and receiving no break

Parents - suggestions Get parents to write for a Children Act 1989 assessment Get it in writing Choose your battles Take time out if possible You may need to educate professionals

The help! programme Local authorities or PCTs can buy the help! programme or help! 2 seminars (licensing for help! 2) Looking to develop new seminars by toileting, diet, and sleep New programmes for parents of teens and adults being developed at present New pilot seminar for adults with ASDs later this year

For more information - please contact Support programmes team - Alan Carman or Andrew Powell on