Support For Guidance
Mencap is a UK charity for people with a learning disability. We support their families and carers, too. Find out more about our services and get involved.
Book Beyond Words
Beyond Words produces books, eBooks and other resources for people who find it easier to understand pictures than words. Books Beyond Words use pictures to tell stories that engage and empower people, across a broad range of themes. https://booksbeyondwords.co.uk/
Pathways is really excited to be one of 4 national partners involved in developing and trialling the Oliver McGowan Mandatory Training. We are working in Lancashire and South Cumbria. This is a fantastic opportunity for people with a learning disability and autistic people and families to have their voices heard and improve our futures together. https://pathwaysassociates.co.uk/partners/training/oliver-mcgowan-mandatory-training-in-learning-disability.html
Gloucestershire Health and Care NHS Foundation Trust
Bild Oliver McGowan Mandatory Training Trial
Bild is leading a group of organisations to co-design and co-deliver training for health and social care staff who support patients with learning disabilities and autistic people. https://www.bild.org.uk/oliver-mcgowan-mandatory-training-trial/
National Autistic Society (NAS)
The leading UK charity for those with autism and their families, providing information, support and other services. The NAS will often run short courses locally and it would be worth enquiring about their programmes. They have a helpline, and also offer services such as befriending. Tel: Autism Helpline 0808 800 1050 Email: email@example.com Website: www.autism.org.uk/
You may also like to contact Cerebra, a national charity for families of children with neurodevelopmental conditions (Including autism) which can offer general support and advice as well advice on sleep difficulties. Website: www.cerebra.org.uk
Autism Education Trust
The AET is a not for profit programme led by two national autism charities – the National Autistic Society and Ambitious about Autism. Established and supported by the Department for Education, the AET promotes and supports partnerships throughout the education system to improve educational access, experience and outcomes for children and young people with autism. Website: www.autismeducationtrust.org.uk/
Financial and Mobility Assistance Disability Living Allowance (DLA)
If your child is under 16 you may be eligible to apply for Disability Living Allowance (DLA) on behalf of your child. Website:www.gov.uk/disability-living-allowance-children/overview Personal Independence Payment Those over the age of 16 may be eligible for Personal Independence Payment Website:https://www.gov.uk/pip From 30 August 2019, the Blue Badge Scheme to support mobility was extended to individuals with a non-visible difficulty such as autism. Eligibility criteria for the scheme can be found at Website: www.gov.uk/government/publications/blue-badge-can-i-get-one
Understanding an Autism Diagnosis
You may wish to explore some books which may help in considering how best to talk about this new diagnosis – examples include:
I am Utterly Unique: Celebrating the Strengths of Children with Asperger Syndrome and High-functioning Autism by Elaine Marie Larson
Different Like Me: My Book of Autism Heroes by Jennifer Elder.
Females on the Spectrum Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-Teen and Teenage Years by Shana Nichols Aspergirls: Empowering Females With Asperger Syndrome by Rudy Simone
I am Aspien girl: the unique characteristics, traits and gifts of females on the Autism Spectrum by Tania A. Marshall
Asperger's and Girls: World-Renowned Experts Join Those with Asperger's Syndrome to Resolve Issues That Girls and Women Face Every Day! by Tony Attwood, Temple Grandin et al.
Life on the Autism Spectrum - A Guide for Girls and Women by Karen McKibbin
Parenting Girls on the Autism Spectrum: Overcoming the Challenges and Celebrating the Gifts by Eileen Riley-Hall
Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age by Sarah Hendricks
The Girl with The Curly Hair: https://thegirlwiththecurlyhair.co.uk/ The Curly hair Project was founded by autistic author and entrepreneur Alis Rowe to support people on the autistic spectrum and those around them.
Alis has written a series of books which include:
Asperger's Syndrome in 13-16 Year Olds: by the girl with the curly hair: Volume 2 (The Visual Guides)
Asperger's Syndrome and Anxiety: by the girl with the curly hair: Volume 8 (The Visual Guides)
Asperger's Syndrome Meltdowns and Shutdowns: by the girl with the curly hair: Volume 3 (The Visual Guides)
Asperger's Syndrome: Social Energy: by the girl with the curly hair: Volume 5 (The Visual Guides)
An information sheet for the family regarding sharing an autism diagnosis is also available on the National Autistic Society website: www.autism.org.uk/advice-and-guidance/topics/diagnosis/disclosing-your-autism
The website for Autism Education Trust has information in a range of formats, including film blogs of young peoples’ experiences of receiving their diagnosis. Website: https://www.autismeducationtrust.org.uk/receiving-and-understanding-a-diagnosis/
There are a range of sources of information for parents and young people on how autism and sensory issues overlap. The National Autistic Society has information on its web site website;https://www.autism.org.uk/advice-and-guidance/topics/sensory-differences/sensory-differences And the Autism Education Trust has produced this more detailed explanation in conjunction with East Essex County Council Links:https://www.aettraininghubs.org.uk/wp-content/uploads/2014/05/sensory-issues-in-autism.pdf
There are also many books available that talk about the sensory systems, how sensory differences can impact on behaviour and what techniques can be used to help manage sensory issues.
The Out-Of-Sync Child: Recognizing and coping with Sensory Processing Disorder By Carol Stock Kranowitz, M.A.
The Out-Of-Sync Child Has Fun: Activities for kids with Sensory Processing Disorder By Carol Stock Kranowitz, M.A.
Too loud too bright too fast too tight: What to do if you are sensory defensive in an overstimulating world By Sharon Heller, PH.D.
Advice on understanding and managing sensory processing difficulties is also available on the CYPF toolkit https://www.berkshirehealthcare.nhs.uk/media/168285/bh_cypittoolkit_section6_sy_cypitandreferrals_pr1.pdf
Your child may need ongoing support with developing social understanding. There are a number of useful resources which you and school may wish to explore. These include:
Understanding the unwritten rules of friendship by E Kennedy-Moore & N Madorsky Elman
Friends Forever: How Parents Can Help Their Kids Make and Keep Good Friends by Fred Frankel
Social Skills Success for Students with Autism/ Aspergers: Helping Adolescents on the Spectrum Fit In by F Frankel, F & JJ Wood
Friendships: The Aspie Way by Wendy Lawson Using Visual Cues Autistic children often benefit from the use of visual cues.
These can be used to support planning, manage changes or support communication. A range of visual cues can be accessed here: Website: https://autismwales.org/en/ Website:www.autism.org.uk/about/strategies/visual-supports.aspx
Some children may benefit from ongoing support in developing problem solving skills, including perspective taking. You may find the following books useful:
The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross W. Greene
Interactions and Controlling Their Emotional Responses by Kari Dunn Buron & Mitzi Curtis
Children who experience anger or anxiety may benefit from learning the warning signs of when the anger or anxiety is beginning to build; as well as a clear plan of what works to calm herself down at each stage. This is a useful resource: The Incredible 5-point Scale: Assisting Children with ASDs in Understanding Social Interactions and Controlling Their Emotional Responses by Kari Dunn Buron & Mitzi Curtis
Parents of autistic children often have concerns about their restricted eating patterns. You may find the resources on Zoe Connor’s website (paediatric dietitian with an interest in autism) useful to manage concerns around eating.Link: http://www.zoeconnor.co.uk/
The National Autistic Society also has some specific information regarding why autistic young people may have difficulties with eating. website:https://www.autism.org.uk/advice-and-guidance/topics/behaviour/eating/all-audiences
The charity SEED is and Eating Disorder Support Service and can offer a range of support and guidance website:https://seedeatingdisorders.org.uk/services
There is a strong link between sleep difficulties and autism and over time these may have an impact upon behaviour and learning and, in some cases,emotional and physical well-being; difficulties can include, falling asleep, staying asleep, sleep walking and talking, enuresis (bed-wetting) and dreaming.
The National Sleep Foundation has a wide range of advice and guidance: Website: https://www.sleepfoundation.org/
The National Health Service produces a sleep diary and sleep hygiene advice: website:www.nhs.uk/Livewell/insomnia/Documents/sleepdiary.pdf
The Children’s Sleep Charity offers training and workshops specifically focussed on the sleep needs of families of autistic children. Website: www.thechildrenssleepcharity.org.uk
Cerebra can also offer support and advice on sleep Website: www.cerebra.org.uk Siblings and peers
There are also resources to help your child’s peers or siblings begin to understand autistic differences. Teifi and Friends is a cartoon which shows some of the difficulties an autistic person may have and promotes acceptance: Website: https://autismwales.org/en/parents-carers/information-for-siblings/teifi-and-friends/
Autism Superheroes is a comic strip book that aims to increase awareness of autism in children. Website: https://autismwales.org/en/parents-carers/information-for-siblings/autism-superheroes/
Sibs is a charity supporting siblings of children with a range of difficulties including SEN, autism or other serious long term condition. They offer information and advice to parents and professionals on who to support siblings. Website: www.sibs.org.uk
Information and Resources for Schools
It will be important for your child’s school to have a good understanding of the difficulties associated with autism in order to offer targeted support and ongoing skills teaching. This should include adapting staff communication, using visual supports, providing structure, routine and consistency with particular consideration of planning, preparation and support that might be needed around less structured parts of the day, change and transitions. For example, she may need particular support at the beginning and end of the day and may benefit from the opportunity to go to a small relaxing room with a familiar adult or group of children at these times to engage in an activity she enjoys in a calming environment before the busy school day begins. It may be helpful for you and your child to complete a ‘passport’ which will act as a brief summary of your child’s needs and preferences. If your child is transitioning to or already in a secondary setting you may request that it is copied to all staff involved with their care and education.
Call Scotland have a range of examples and templates on their website: website: www.communicationpassports.org.uk
The National Autistic Society produces a Passport to individual autism support, which may be useful for young adults transitioning to college settings or training and a Hospital Passport for those who may need hospital treatment of some form. The use of autism specific resources such as visual timetables, social stories and comic strip conversations are likely to be particularly helpful. It is also important to recognise the potential impact of sensory processing difficulties in coping with the school environment and information and guidance is available on the National Autistic Society website https://www.autism.org.uk/advice-and-guidance/topics/sensory-differences/sensory-differences
Autism Education Trust The Autism Education Trust website hosts numerous resources for schools, and also a school training programme. Link: www.autismeducationtrust.org.uk/resources/ National Autistic Society
There are many excellent documents for schools outlining good practice for support for pupils with autism in mainstream schools and details of these can be found on the National Autistic Society Link:https://www.autism.org.uk/advice-and-guidance/professional-practice?searchTerm=teaching
Girls on the Spectrum
National Association of Special Educational Needs (NASEN) has produced a free useful guide which identifies key issues for girls on the spectrum and provides practical school-based support strategies https://nasen.org.uk/resources/girls-and-autism-flying-under-radar
Many autistic children find transitions difficult, especially the transition from primary to secondary school. Careful consideration should be given to what support they may need before, during and after transition. This can be discussed with the SENCO at your current school and the SENCO at the new secondary school, once this has been identified. Transition support may include extra visits, visual supports, any summer school activities offered etc In relation to secondary transition, there is a very useful document entitled Children with autism accessing the curriculum at key stage 3 and 4, which can be downloaded free and contains subject specific guidance (this can also be found by a Google search for the document title) Links:https://www.autism.org.uk/advice-and-guidance/topics/transitions