Autistic Spectrum Disorder (ASD) Support

Explaining ASD to your child and/or their sibling(s)

It can feel quite daunting explaining or making sense of an ASD diagnosis in a way that's meaningful for you and your family, particularly considering the nuances and diversity of people on the autistic spectrum. However, here we have included some suggestions that others have told us they have found useful. We encourage you to search your local library, or speak to your child's school who may be able to provide access to such books.

We hope in this selection you can find a book or resource that works for you.

• The Ice-Cream Sundae Guide to Autism: An Interactive Kids' Book for Understanding Autism Debbie Elley and Tori Houghton
• The ASD Workbook. Understanding your Autism Spectrum Disorder Penny Kershaw
• The Spectrum Girl's Survival Guide: How to Grow Up Awesome and Autistic Siena Castellon and Jennifer English
• The children's guide to Autism Fiona Reeves
• All Cats Are on The Autism Spectrum Kathy Hoopmann

• The Asperger's and Me: Girl with the Curly Hair  Alis Rowe

• Everybody is Different: A book for young people who have brothers or sisters with autism Fiona Bleach

Education support

If you have questions regarding your child/young person support needs in school, or are concerned about any aspect of their support package within school, the first suggestion would be to raise this with relevant people within the school itself to explore this together and agree next steps. In many instances this would be the SENDCO (Special Educational Needs and Disabilities Coordinator). These are specialist teachers who are responsible for coordinating the special educational needs support in schools.

However, these services and resources are also available to help you through this process, if needed:

The Working Together Team

The Working Together Team offers high quality support to schools and academies working with students with a wide range of social communication or learning needs. The team works in partnership with our colleagues in schools and academies within the graduated approach outlined in the SEN Code of Practice. They provide expertise and practical specialised assistance that enables children and young people to achieve the best possible educational outcomes and make successful transitions to adulthood.
 

Telephone 01775 840250 (Available during school hours)
Email outreach@gosberton-house.lincs.sch.uk
Website www.twtt.org.uk

Liaise

Liaise is a free, confidential and impartial Special Educational Needs and Disability (SEND) Information and Support Service for Lincolnshire. They offer information and advice about SEN and Disabilities to parents, young people and children (0 to 25 years). They provide initial help and support via telephone and email and have a confidential helpline for parents and young people.

Telephone 0800 195 1635
Email liaise@lincolnshire.gov.uk
Website: www.lincolnshire.gov.uk 

Moving On and Preparing for adulthood guide for parents

Leaving full time education can be worrying for most young people, but for young people who have special educational needs and or disabilities it can be a very difficult time. Parents and carers can also find this to be a difficult time. There are many uncertainties about where to go for support and information in order to make informed decisions to help secure a bright and happy future.

Download the PDF of Moving on and Preparing for Adulthood guide for parents

Parent/carer led Organisations

Not Fine In School 

Not Fine in School is a parent/carer led organisation set up in response to the growing number of children and young people who struggle with school attendance. Providing support with 'school attendance barriers', which often  relate to:

• unmet Special Educational Needs & Disabilities (diagnosed or suspected)
• bullying
• trauma
• excessive levels of academic pressure
• physical illness
• mental illness. 

Website: https://notfineinschool.co.uk/

Define Fine

Define Fine is a parent/carer-led organisation set up in response to the growing number of children and young people who experience school attendance difficulties. Define Fine has produced resources based on relevant government policies and guidance, to help parents and their families to work with professionals to assess and then plan appropriate and timely support.
 

Website: http://definefine.org.uk/

The Independent Provider of Special Education Advice (IPSEA)

The Independent Provider of Special Education Advice (known as IPSEA) offers free and independent legally based information, advice and support. They help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND). They also provide training on the SEND legal framework to parents and carers, professionals and other organisations.
 

Website: https://www.ipsea.org.uk/

Carers support

Carers FIRST

Carers FIRST provide:

• expert information
• advice
• guidance
• emotional support
• carers assessments
• training
• activities.

Carers are connected together within their local communities through support groups and volunteers, giving carers an opportunity to get the support they need.

Telephone 0800 303 1555
Email info@carersfirst.org.uk
Website www.carersfirst.org.uk

Carers Emergency Response Service (CERS)

The provides carers with peace of mind that in the event of a sudden emergency, the person you care for will receive help and support whilst you're not there.
Telephone 01522 782331
Website www.carersfirst.org.uk/lincolnshire/carers-emergency-response-card

Lincolnshire Autistic Society

The Lincolnshire Autistic Society champions the rights and interests of autistic people. They work together with local support groups and statutory services to:

• raise awareness of autism
• improve what's available in Lincolnshire
• provide advice to families
• share up to date information.

They work in partnership with a range of support groups who help people with autism and their parents and carers in lots of different ways.

Email enquiries@lincolnshireautisticsociety.org.uk
Website www.lincolnshireautisticsociety.org.uk

PAACT (Parents and Autistic Children Together)

PAACT is a Lincoln based support group for families with children and young people who have an Autistic Spectrum Condition. We are a friendly, informal, non-judgemental group. We aim to help family and friends to access advice, support and activities in the local area.

They offer parents:

• Twice monthly support meetings
• Facebook for you to seek advice
• Regular newsletters to keep you informed
• Library of books and materials for our members to borrow
• Talks by professionals and organisations
• Games Club 2nd Saturday of the month
• Weekly Youth Club for 11 to 25 year olds during term time only.
• Annual family membership £7.50. Events £3.00 per child

Telephone 01522 581915
Email paactsupport@hotmail.co.uk
Website www.paactsupport.com

Lincolnshire Young Carers Service

The Lincolnshire Young Carers Service supports young carers up to the age of 19 years. Young Carers may be helping and supporting a family member or friend due to disability, mental ill health, illness or substance misuse.

A young carer may be providing support with:

• cooking, housework and shopping
• physical care, such as helping someone in and out of bed
• personal care, such as assistance with dressing, toileting and administering medication
• managing the family budget
• collecting prescriptions and arranging GP or hospital appointments
• helping with communication
• looking after brothers or sisters
• emotional support

The Lincolnshire Carers Service can also provide support for young carers from the age of 16 years, depending on need.
Website https://www.lincolnshire.gov.uk/support-carers/young-carers
Email youngcarers@lincolnshire.gov.uk
Telephone 01522 553275

Support groups and helplines

National Austistic Society (NAS)

NAS is the UK's leading charity for people on the Autistic Spectrum, providing support, guidance and advice for parents carers and professionals on ASD. NAS also run a UK wide confidential telephone emotional  support service for parents and carers of people with ASD called Parent to Parent. This is ran by trained volunteers, who are all parents of autistic children and adults.

Telephone 0808 800 1050
Website www.autism.org.uk

Lincolnshire Parent Carer Forum (LPCF)

Lincolnshire Parent Carer Forum (LPCF) is Lincolnshire’s Parent Carer forum recognised by the Department for Education. LPCF is a registered Charity supporting parents and carers of children with disabilities and SEN in Lincolnshire through its parent carer forum. They also offer informative online workshops for parents and carers.

Email admin@lincspcf.org.uk
Website lincspcf.org.uk

PAACT (Parents and Autistic Children Together)

PAACT is a Lincoln based support group for families with children and young people who have an Autistic Spectrum Condition. They are a friendly, informal, non judgemental group. They aim to help family and friends to access advice, support and activities in the local area.

They offer parents

• Twice monthly support meetings
• Facebook for you to seek advice
• Regular newsletters to keep you informed
• Library of books and materials for our members to borrow
• Talks by professionals and organisations
• Games Club 2nd Saturday of the month
• Weekly Youth Club for 11 to 25 year olds during term time only.
• Annual family membership £7.50. Events £3.00 per child

Telephone 01522 581915
Email paactsupport@hotmail.co.uk
Website www.paactsupport.com

KIDS

KIDS is part of Lincolnshire Early Years support and Learning provision and delivers early support for disabled children and those with compelx health needs across the county. This service is available for all parents and carers with children under 5 years. KIDS’ Early Support and Learning Provision sessions last 2 hours, with an additional parent support hour either before or after the session. KIDS’ Early Support and Learning Provision sessions bring parents and carers together with their pre-school children, so that they benefit from the advice and support of other parents, professionals and KIDS’ staff.

Telephone 01522 542937
Email jane.frecklington@kids.org.uk
Website www.kids.org.uk/lincolnshire

GAIN

Grantham Autistic Information Network (GAIN) supports families with children on the autistic spectrum in Grantham and beyond.

Website www.gain-grantham.co.uk

Rainbow Stars

Rainbow Stars is a charity set up for for Parents/Carers,Siblings and anyone with a disability or seeking a diagnosis. The Rainbow Stars Hub in Sleaford is opendaily from 10am - 3pm and do events for all ages and abilities. This is currently for daytime sessions, after-school clubs on Mondays and Tuesdays, and Sibling sevening on alternate Wednesdays and Thursdays. Further information can be found on the Rainbow Stars Facebook page.

Email jane.peck@hotmail.com
Website https://rainbowstarslincs.co.uk/

Hearts and Minds 'Autism' Peer Support group for young people aged 14 years to 25 years

Hearts & Minds is the UK’s only peer led charity and service for young people experiencing mental health difficulties. It is entirely ran by young people with lived experience, for young people with lived experience, not attached to or led by statutory services, clinicians or larger mental health or youth organisations.

Hearts and Minds run a monthly digital autistic peer support group is for anybody who identifies as autistic aged 14 years to 25 years (no diagnosis needed). It runs on the first Monday of the month from 7pm to 8.30pm via Zoom. Hearts and Minds will always have a one to one with you before your first session to check in with how you’re feeling about the online setting, and to see if they can help young people feel more comfortable in the group

Website heartsandminds.org.uk/about

Young Sibs Charity

YoungSibs is a charity for children and young people who have a brother or sister who is disabled, has special educational needs or a serious long-term condition. It is for siblings in the UK who are under 18 years of age. They offer information, advice via their website or 'sibling advisor' service.

Website https://www.sibs.org.uk/

Helpful resources and factsheets

Options Autism

The Options Autism Clinical Team have created a wide series of help sheets offering parents and carers advice and guidance when supporting a young person or an adult with Autism. There is advice and support regarding the transition into adulthood and what needs to be considered with an accessible guide providing all the relevant information.

Telephone 08442487187
Email info@ofgl.co.uk
Website www.optionsautism.co.uk/resources

Ann Craft Trust: 'Helping My Autistic Child Stay Safe Online'

Parents and carers worry about online sexual harm, and what they’d do if it happened to their child. When you are caring for an autistic child, it can feel like there are lots of extra things to worry about. How we respond to an autistic child who might have been sexually harmed online can affect their recovery. So it’s important to send the right messages from the start. This leaflet has been produced to help parent and carers navigate this issue.

'Helping My Autistic Child Stay Safe Online' Leaflet

The Sleep Charity

The Sleep Charity provides access to information and advice to help you deal with most sleep issues (child and adolescent) to ensure everyone understands the value of a good night’s sleep. They also host courses for professionals to improve their understanding of common sleep issues.

Telephone 01302 751416
Email: info@thesleepcharity.org.uk
Website www.thesleepcharity.org.uk

Witherslack Group

The Witherslack Group offer free webinars and resources on special educational needs to support parents and carers along with podcasts, articles and videos. Parents and carers can sign up for the Mental Health resources pack to gain access to all the resources available.

Email webinars@witherslackgroup.co.uk
Website www.witherslackgroup.co.uk

The Autism Education Trust

The Autism Education Trust offers a range of resources for both parents and carers and young people. Parents and carers can access a guide on 'Working together with your child's school' along with information on all aspects of school exclusion. The kids zone includes a range of videos covering topics. Videos are also available to watch of young people with a diagnosis sharing their experience to support young people and their families.

Website www.autismeducationtrust.org.uk

Lincolnshire Autistic Society

The Lincolnshire Autistic Society champions the rights and interests of autistic people. They work together with local support groups and statutory services to:

• raise awareness of autism
• improve what's available in Lincolnshire
• provide advice to families and share up-to-date information.

They work in partnership with a range of support groups who help people with autism and their parents and carers in lots of different ways.

Email enquiries@lincolnshireautisticsociety.org.uk
Website www.lincolnshireautisticsociety.org.uk

The Challenging Behaviour Foundation

The Challenging Behaviour Foundation focusses on the needs of people with severe learning disabilities whose behaviour challenges, and their families. They offer support to families through a wide range of information sheets, webpages, packs, templates and DVD's and signpost for further support where needed.

Telephone 0300 666 0126
Email support@thecbf.org.uk

Website www.thechallengingbehaviour.org.uk

Autism West Midlands

Autism West Midlands are committed to providing up to date information about autism to autistic people, their families and carers, and professionals. We have various information and visual resources available online, all free to access and share.

Website www.autismwestmidlands.org.uk/online-resources/information-resources

The Autism Research Group

This booklet and guide helps present readers with research information regarding the overlap between Autism and Anxiety. The aim of this guide is to help educators and other professionals make informed decisions about how to promote mental health and well being in autistic children under their care.

The Autism Research Group: An Evidence Based Guide to Anxiety in Autism booklet

The National Strategy for Autistic Children, Young People, and Adults 2021-2026

This is the new Government Strategy for Autistic children, young people and adults and helps set the scene for the future of support for Autistic Children in the United Kingdom.

The National Strategy for Autistic Children, Young People, and Adults 2021-2026

Sheffield Childrens NHS Trust

Sheffield Childrens NHS Trust have a lot of information on their  website can help with strategies and support you and your family with difficulties lots of young people with neurodevelopmental conditions experience. There are a number of pages filled with resources to manage difficulties around

• sleep
• mood
• anxiety
• sensory issues
• going back to school. 

Sheffield Childrens NHS Trust resource page

Autistic Girls Network

The Autistic Girls Network campaigns for better recognition and diagnosis of autistic girls and to support them in finding their identity and feeling understood. Their  aim is to raise awareness of autism in girls with health, social care and educational professionals and to bring change. Change not only to the way that autistic girls are assessed and subsequently supported but to the narrative, with updated and positive terminology used to describe autistic traits.They have published a paper called ‘Autism, Girls and Keeping it all inside’ about how ASD in girls may present and how to support this.

Website:  The Autistic Girls Network