Autistic Spectrum Disorder (ASD) Support
Autistic Spectrum Disorder (ASD) support
We recognise that young people with a diagnosis of Autism and/or social and communication difficulties are more likely to experience high levels of emotional distress, and as a parent it can often feel difficult to find the right support for you and your child. We have therefore put together this information page to try to help you makes sense of what support is available in LPFT Children and Young People (CYP) services, education services, and in the community.
LPFT CYP Services in Lincolnshire do not provide a specialist or diagnostic service for children and young people with a diagnosis, or suspected diagnosis, of Autistic Spectrum Disorder (ASD).
What support do we offer?
Here in LPFT we have a range of emotional wellbeing and mental health services for children, young people and families. These services may be right for you and your child/young person in the following circumstances.
- If a young person is assessed by our practitioners as presenting with an emotional and/or mental health difficulty. The types of support we offer depends on the types of difficulties that your child is experiencing.
- If a young person is assessed by our practitoners as presenting with an emotional and/or mental health difficulty, and we agree together that you, as their parent/carer, could benefit from advice and/or attending one of our parent/carer programmes or workshops.
These parent/carer programmes/workshops are designed to provide support on different approaches that you could use to help your child with their mental health needs, and some space to think about what strategies might be helpful for your child and family.
Reasonable Adjustments
Reasonable adjustments are made for all children and young people open to our services, taking in account ages, cognitive ability, communication needs, and individual circumstance and need.
If you think your child/young person requires reasonable adjustments to access our service, then please let us know (for example, it may be helpful for you to tell us in advance about what we might need to consider when setting up a first appointment for your child e.g. would digital or face to face be easier?)
I'm still not sure if you can help
To find out more about the different services we offer, please visit our 'I need more help' webpage.
If you are worried about the emotional and mental wellbeing of your child, and/or want to discuss whether we are the right service for you, then please visit our self-referral webpage and/or contact our Here4You Advice and Referral line (24 hours a day) on 0800 234 6342.
What other supports/services are there?
Neuro-diverse children and young people may continue to find aspects of life challenging and may find making changes very difficult. They may need those important people around them (parents/carer, schools) to alter their approach to help the young person realise their potential.
With this in mind, we have put together a directory of websites, education resources, support groups and other services that we hope can help. Alongside this, it may also be helpful to take a look at Lincolnshire's 'Local Offer' which has further information about local services for children with special educational needs and disabilities and their families.
Lincolnshire Parent Carer Forum work alongside the Local Authority and Health to help services meet the needs children with Disabilities and Special Educational Needs. They also facilitate some free events for parents. For more information on their latest events or to sign-up please explore the Lincolnshire Parent Carer Forum Website.
It can feel quite daunting explaining and/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/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
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)- specialist teachers who are responsible for co-ordinating the special educational needs support in schools.
However, these services/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 and / or learning needs. Working in partnership with our colleagues in schools and academies within the graduated approach outlined in the SEN Code of Practice, the Working Together Team provides 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 helpline: 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 (0-25). 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 (search for 'liaise')
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
Carers FIRST
Carers FIRST provide expert information, advice, guidance, emotional support, carers assessments, training and 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 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
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 11-25 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.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, depending on need.
Website: www.lincolnshire.gov.uk/support-carers/young-carer-support/2
Email: youngcarers@lincolnshire.gov.uk
Telephone: 01522 553275
National Austistic Society
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 11-25 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/carer with children under 5. 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: www.rainbowstarssleaford.com
Hearts and Minds 'Autism' Peer Support group for young people aged 14-25
Hearts & Minds is the UK’s only peer led charity and service for young people experiencing mental health difficulties. They are entirely 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 to 25 (no diagnosis needed) – it runs on the first Monday of the month from 7pm to 8.30pm via Zoom. If 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: www.youngsibs.org
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: 08442 487187
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/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 resourceson special educational needs to support parents andcarers 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 presents 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 and going back to school.
Ellen- Me and my Autism
"Autistic Person" or "Person with Autism?"
‘Person with autism’ or ‘person first language’ is used to make sure the person is put at the centre of their own life and recognises that they are a person first.
‘Autistic person’ or ‘identity first language’ recognises that someone can’t leave their autism behind and that it is an inherent part of who they are and how they experience the world.
On this webpage we have used a mixture of 'person-first' and 'identity-first' language, recognising that this is a point of debate, and people may come with different preferences.
Autism Spectrum Disorder (ASD) or Autism Spectrum Condition (ASC)?
'Autistic spectrum disorder‘ is the label given by medical professionals to someone with autism. Medical professionals will generally use the term ASD when referring to the condition.
'Autism spectrum condition' is sometimes used by those outside the medical profession to describe someone with autism.
Education and social care professionals are questioning whether autism should be viewed as a disability, as indicated by the word ‘disorder,' moving away from potential negativity associated with the term.
As an NHS organisation, throughout this webpage we use the term ASD. However, we recognise that it is helpful and valuable to recognise the strengths and talents that can be linked to a young person's ASD, rather than viewing it as a 'problem'.
What about Aspergers?
Aspergers used to be a term used to describe what was considered a specific 'type' of ASD and/or point on the Autistic spectrum. However, this diagnosis has not been used since 2013, with the umbrella term of 'ASD' being adopted instead.
You may find some resources/books featured on this webpage that still use the term 'Aspergers'. This will typically reflect that a new edition of that book/resource has not yet been published.
Neuro-diversity
Neuro-diversity typically refers to the range of differences in individual brain function and/or behavioural traits, that are regarded as part of normal variation in the human population.
This term is often used in the context of ASD as it reflects the belief that ASD is a normal variation of the human experience, rather than being seen as a 'problem to be fixed'. Neurodiversity suggest that people with ASD instead have different needs and different ways of coping. This move toward 'neurodiversity' is seen by many as a move toward more widepsread acceptance for those on the spectrum.
We have used this term on the webpage at points to reflect our approach in CYP services. When working with young people with ASD, rather than 'fixing' or eliminating 'symptoms' of ASD, we will seek to help young people (and parents/carers) understand their experience, including what may underly their behaviour, and explore/recommend ways to manage moving forward.
