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Supporting families living with autism Autism West Midlands Family and Information Service Impact Report 2009 - 2013


You have helped me through some really challenging times. You offered advice, guidance and support when I needed it. Without this service I really don’t know what I would have done. To have someone to turn to and listen without judgement has been a lifeline for me and my family. Parent of a child with autism


Family Outreach


Our family outreach workers provide support in the home to families in Birmingham, Warwickshire and Staffordshire where one or more children has a diagnosis of autism.The team offer a range of support services to families who are often close to crisis.This support includes:

Advocacy

Hand-over-hand learning

A listening ear, advice and guidance

Autism awareness sessions in the home for family members

Strategies for understanding and managing challenging behaviour

Attending educational meetings to support parents

Referrals to other agencies

Supporting letters, telephone calls and documentation

Since 2009 our Family Outreach Service has provided intensive support in the home for 271 families.


The strategies we create and implement for families make a real difference to their lives.These examples show the impact of what we do:

James (15) had episodes of extremely challenging behaviour that were distressing for himself and for those around him. He would throw chairs, bite, and kick when out in public and in the family home. As he was getting physically stronger other family members were starting to become scared of him. A family outreach worker was assigned to work with the family and discovered that at the root of the problem were high levels of anxiety that caused James to lash out. We put in place a visual timetable, highlighting to James exactly what was going to happen and when. We also showed him sequences of events - first this, then this. Additionally, we realised that James was at his most relaxed when watching DVDs about trains at home. We sought to replicate this sense of calm through a portable DVD player and headphones. James can now watch DVDs about trains when travelling on public transport, reducing his anxiety and meaning he is less sensitive to the noise around him.

Sarah (7) refused to brush her teeth or do her homework. She also loves penguins. A simple, and effective strategy was the introduction of a penguin character timer. This object meant the family could use one of Sarah’s special interests to help her to want to brush her teeth and do her homework - with the penguin by her side.

Jack (7) was displaying challenging behaviour at school. This was brought to a crisis point when he hit a teacher. A family outreach worker got to know Jack and the family and learnt that Jack didn’t understand his own emotions, how to recognise them and how to control them. Jack’s special interest is Power Rangers, so the team adapted the Five Point Scale tool to help him understand his feelings and express them. Jack is now more aware of his emotions and is confident in recognising when he needs some time out to calm down.


Thank you so much for your support. I really don’t know what it would have been like without it. You have fought and battled for us.

Parent of a child with autism who has been supported by our Family Outreach service


Information Helpline


The helpline is often the first call a parent makes when their child receives a diagnosis of autism. The team have substantial knowledge of autism and provide factual information and support and a listening ear. It is not uncommon for the team members to spend several hours on the phone to a caller, working through a particular problem or challenge.The helpline team provide advice and support to parents, siblings and other family members and anyone with an interest in or query about autism. The helpline team regularly attend events in the community to provide information and guidance. Additionally, we have organised Autism Outreach Tours to bring autism knowledge and advice to community spaces ranging from church halls to supermarket car parks.

Since 2009, our information helpline has dealt with almost 10,000 enquiries. We have given face to face information, advice and guidance to more than 1,000 members of the public.


It has been extremely helpful. Not just for the information provided - which was detailed and extensive and just the job - but maybe just as importantly, for the way I have been dealt with by the people manning the call - to talk to someone who knows what you’re going through, or has experience or can relate as well as giving you info is actually an emotional life saver - I think the personal touch is so powerful sometimes; having a child with Autism can often be quite isolating - to have someone who understands and who can help saves our sanity! So bravo! Keep up the good work. A caller to the helpline


Support for carers


Autism West Midlands’ carer support groups run across the West Midlands region and are accessible to all parents, whether or not their child has a diagnosis of autism.The groups provide a listening ear and sounding board for emotions and experiences.The groups provide opportunities for families to meet each other and discuss issues and to increase knowledge and understanding. The groups can reduce feelings of isolation and provide a forum for external agencies and professionals to meet with parents and discuss services they provide.

Since 2009 we have established 10 new support groups for more than 300 parents, and have built links with 30 other groups. Last year we created a support group for dads and 15 dads attend on a monthly basis.


It was an absolute lifesaver when Sarah was first diagnosed with autism, aged three. On the days when I was at the end of my tether, I would call you in tears, chat for half an hour and hang up feeling that I had been listened to, I could cope, and I had been given some useful and practical strategies that I could try. I also gained some insight into why Sarah behaved as she did...she wasn’t just naughty! Lynda Harris Parent of a child with autism


Supporting siblings


A diagnosis of autism in the family can have a huge impact on the child’s siblings. Our support is delivered as workshops, specifically for siblings of individuals with autism. The workshops provide an opportunity to meet other siblings of people with autism.They offer the chance to discuss problems and concerns - siblings can be open and honest in a nonjudgemental environment. A range of activities including drama therapy can help to reduce social isolation and increase siblings’ confidence.The groups allow parents to have a short break or spend time with their child with autism.

Last year, we supported 18 siblings of children with autism through our new sibling workshops


Family activities and training


Autism West Midlands’ team of Family Outreach Workers run a range of family activity days and training events within Birmingham, Staffordshire and Warwickshire.

Family Days Family Days are aimed at families who have a child with autism and can be attended by the whole family. Often, grandparents, aunties and uncles attend along with the parents and children (including siblings).They take place in local community venues such as community centres and church halls. Venues are chosen specifically with the needs of the young people in mind.They take place at the weekends, enabling parents who work to attend training. Parents and other adult family members are given a full-day workshop around a specific topic, facilitated by a specialist Autism West Midlands trainer. Family Outreach Workers consult local families when deciding on topics for the family day. Topics have included Managing Challenging Behaviour, Sensory Issues, Anxiety, and Play Skills. While the adult family members access the training workshop, the children with autism and their siblings have a schedule of activities throughout the day with a team of trained and experienced play-workers. Activities are specially designed for children with autism and their siblings and include show and tell, parachute games, sports and individual activities.The family days are very popular and provide enormous benefits for all of those who attend:

Autism Awareness Training We offer free Autism Awareness training sessions for parents.In these sessions, we discuss behaviours and possible causes and look at strategies. We also provide examples of resources and visual aids with instructions on how they are used. All sessions are interactive and tailored to the audience.

Advice Clinics Advice Clinics are one-to one contact offering advice and guidance to parents and other family members. We offer a listening ear and provide advice on strategies that may help.

Family Activities Last year, we organised ten different activities for families including picnics, bug hunting, trips to museums, zoos and “Stay & Play� events.These take place at weekends and during school holidays and provide an opportunity for a stress-free day out for the whole family.


Since 2009 we have organised 33 activities and events attended by over 300 families. We have delivered 58 training sessions attended by 491 carers and professionals. We provide face to face support to 40 families per month through our advice clinics.


About Autism West Midlands There are more than half a million people in the UK living with autism, an invisible, misunderstood and lonely disability. 60,000 live in the West Midlands. We are the leading charity in the West Midlands for people affected by autism. We exist to enable all people with autism and those who love and care for them to lead fulfilling and rewarding lives. Our passionate, expert staff and volunteers work across all age groups and abilities, providing direct support to people affected by autism.

Contact us Autism West Midlands Regent Court George Road Edgbaston Birmingham B15 1NU Email: hello@autismwestmidlands.org.uk Telephone: 0121 450 7582 Information helpline: 03 03 03 00 111 Website: www.autismwestmidlands.org.uk

Find us on Facebook: Search “Autism West Midlands�

Follow us on Twitter: @autismwestmids Our vision is a world where all people on the autism spectrum have the specialist care and support they need to lead fulfilling and rewarding lives. Registered Charity Number: 517077 Registered Company Number: 1953344 (England and Wales)

Supporting families living with autism- AWM Family and Information Service