Autism Assessment Service
Paediatric Autism Assessment and Diagnosis Service
A post assessment guide to support, services and resources.
What’s in this guide….. Colour
Symbol
Page
Foreword………………………………………………………………………………………………………
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Virtual Family Hubs and The Local Offer……………………………………………………….
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The Disabled Children’s Register (DSR)…………………………………………………..…….
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‘My Health Passport’…………………………………………………………………………………….
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Understanding autism………………………………………………………………………………….
5
Behaviour that may challenge……………………………………………………………..……….
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Sleep and insomnia……………………………………………………………………………..……….
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Toileting Support…………………………………………………………………………………..……..
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Emotional wellbeing (mood, emotions and anxiety)…………………………..………..
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Financial Support………………………………………………………………………………………….
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Education………………………………………………………………………………….………………….
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Support / Groups………………………………………………………………….………………….…..
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Other Support……………………………………………………………………………..……………….
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Moving into adulthood………………………………………………………..……………………….
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Autism Friendly Places…………………………………………………………..……….…………….
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Parental wellbeing – Looking after yourself! ……………………………..………………..
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Resources you may find interesting (books, videos, apps)…………………….………
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Useful contact numbers……………………………………………………………………..………..
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Professionals involved in your care……………………………………………….………………
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Acronyms…………….……………………………………………………………..……………….……….
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Appointment reminders……………………………………………………………………………….
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Autism Alert Card………………………………………………………..……………………………….
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Your notes…………………………………………………………………………………………………….
30
Note to reader
The information and services covered in this book are not part of Barnsley Hospital nor is it an endorsement of the organisation. This information was correct at the time of printing however; it is strongly recommended that parents/carers fully explore the relevant service before planning anything. This is not a full directory of services and other services may be available.
Foreword….. Dear Parent(s), Carer(s) or Patient We appreciate that a diagnosis of autism (or not) can leave you experiencing a whole range of emotions and feelings. These can range from a sense of relief, feeling shocked and in some cases upset and this is quite normal. It can also take time to come to terms with a recent assessment outcome as your thoughts and feelings change. We appreciate that it can be hard to process and remember what has been said to you during the Assessment Conclusion and Feedback Session and that’s why you will receive: • a summary of the Conclusion and Feedback meeting which confirms the outcome of your child’s assessment. This can be used to support any applications for financial, social or educational support, and • this post assessment guide to services to help you identify further support and resources that may be useful in the future – please keep this safe.
What happens next? Following the conclusion of your child’s assessment, a summary will be sent to you for your records. A copy of this is usually sent to your child’s school, your family GP and the 0-19 Public Health Nursing Service.
If your child receives a formal diagnosis, an alert will be added to their Electronic Patient Records. This will alert staff within the hospital of the diagnosis and helps us provide better care should they need to access any of our outpatient or emergency services. This alert can be removed by yourself at any time.
At this stage, your child will be discharged back to your family GP as the assessment journey has ended. If your clinician feels that ongoing medical follow-ups are needed, they will discuss this with you and either transfer your child to a Community Paediatric Outpatient Clinic or make plans for onward referrals to other medical services.
You can now access the most up to date version of this booklet online using the QR code to the right.
Barnsley's Virtual Family Hub (Previously known as Barnsley Family Service Directory)
You and Your family can become members of the growing Family Hubs and Start for Life community. It is free to become a Barnsley Family Hub member and by doing so means you will: • Get up to date information on our exciting family events and activities, • Get information on how to access our parenting groups, resources and workshops, • Access to peer support groups and networks, and • Opportunities to have your say on how we deliver our services to you and your family infofis@barnsley.gov.uk | 08000 345 340 https://barnsley.cloud.servelec-synergy.com/Synergy Barnsley's Local Offer Where families have access to the right information at the right time, allowing them to make informed choices about the SEND services and support they receive. For services that are available to everyone, (Universal Services) visit the Virtual Family Hub, The Local Offer is maintained by BMBC's Families Information Service. infofis@barnsley.gov.uk | 08000 345 340, option 1 https://barnsley.cloud.servelec-synergy.com/Synergy/Local_offer Disabled Children’s Register (DCR) The register is a database of children and young people aged 0-25 living in Barnsley with a special educational need (SEN) or a disability. The register helps BMBC understand the different needs of children and young people with SEND in the area. It's not the same as the school's list for special educational needs (SEN) or the database for Education, Health, and Care Plans (EHCP). infofis@barnsley.gov.uk | 08000 345 340, option 1 https://barnsley.cloud.servelec-synergy.com/Synergy/Local_Offer/DCR.aspx
My Health Passport….. The ‘My Health Passport’ is a NAS resource designed and produced for autistic people and is designed to help them communicate their needs to medical and healthcare professionals during a hospital admission or outpatient appointments. To download your copy, please visit www.autism.org.uk/health-passport or scan the QR code at the bottom of this page.
My Health Passport | PAGE 4
Understanding autism….. Autism is a condition which affects a child’s communication and interaction skills as well as the way in which they see the world around us. As Autism has no physical signs, it’s hard to understand sometimes what it is and how to help. Below are several services which you may be able to access to gain a better understanding of Autism and learn some new approaches which you may wish to use at home. The National Autistic Society (NAS) An excellent source of support, information, guidance, Autism helpline and online forums. www.autism.org.uk 0808 800 4104 Autism Central by NHS England As parents and carers of autistic children, young people and adults, it can be hard to find help when you’re trying to get the right support. Autism Central aims to make it easier to learn more about autism and services available to you. www.autismcentral.org.uk
Family Linx Service Supporting families with autistic children under 12 offering 1:1 targeted support, sleep support, behaviour, sensory, transition and puberty workshop as well as delivering the Cygnet course. Their service also runs a weekly peer support group. Linx Together Project Support for parents/carers with children aged 12+ with an pre and post diagnosis. 01226 770619
Children’s Therapy Team (Sensory) Our local Children’s Occupational Therapy Service advice around sensory processing can be found via a range of leaflets and workshops to help you support your child’s sensory differences. https://therapy.barnsleychildrenshealth.co.uk/pages/sensory-offer Autism Support UK Online blog containing posts on a variety of topics relating to autism. www.autismsupport.co.uk Ambitious about Autism A charity for children and young people with autism. www.ambitiousaboutautism.org.uk
PDA Society For information, support and training on PDA www.pdasociety.org.uk Thinking Autism! Information & support for families affected by autism. www.thinkingautism.org.uk
Autism assessment for adults Referrals are made via your family GP. More information about the adult assessment service can be found here: www.southwestyorkshire.nhs.uk/services/autism Understanding autism| PAGE 5
Learning opportunities There are a range of workshops and courses available to parents and carers to help them gain a better understand of autism and to develop the tools and knowledge to help them support their child’s needs. It is important to remember that these are not ‘parenting courses’ and the skills gained through these can make a significant difference when implemented. The Social Communication & Interaction Team (a part of the local Education Inclusion Services) are offering the following training events for parents and carers. Details of what local sessions are available can be found at www.eventbrite.com/o/barnsley-socialcommunication-interaction-team-88988186193 or by using the QR codes below.
Thinking Differently A workshop specifically designed to support the families of pupils who have social communication and interaction needs.
Cygnet Seven weeks of face to face sessions for parents of children and young people (5 to 18 years) who have received a diagnosis of autism.
Autism and Girls A workshop specifically designed to raise of awareness of how girls will autism may present.
Two places can be allocated to a family with the second place being given to a second parent, family member or significant other person within the child or young person’s life.
Teens Workshop A workshop specifically designed to support the families of teenagers who have a diagnosis of Autism.
Lego Therapy Using Lego to help develop knowledge, understanding and application of social skills and problem solving.
Autism and Anxiety This session explores how autism and anxiety impacts individuals and shares good practice and support strategies.
The Family Linx Service and Linx Together Service by Barnardo’s offer the following training events for parents and carers Cygnet Six weeks of face to face sessions for parents of children under the age of 12 who are awaiting or have received a diagnosis of autism. Also available online where needed.
Teen Life Teen Life is a National Autistic Society accredited programme that empowers parents to learn more about autism. 01226 770619
T: 01226 770619
Understanding autism | PAGE 6
Behaviour that may challenge….. We know that some children and young people with autism can display behaviours which may challenge, be upsetting and sometimes hard to manage. These can be triggered by a number of things including the inability to communicate appropriately, anxiety, sensory and/or information overload etc. What we do know is that some of the basic parent strategies work really well without the need for specialist interventions. Health Visitors If your child is under the age of 5, then your Health Visitor can offer behaviour support and strategies. Some services may require you to undertake a period of work with your Health Visitor first. They can be contacted on: 01226 774411 Virtual Family Hub A range of information, courses and apps to help parents understand and support their child’s behaviours. This includes: 1.
Webster Stratton
2.
Solihull
3.
Talking Teens
4.
Understanding feelings
5.
Understanding mental health & wellbeing
https://barnsley.cloud.servelecsynergy.com/ Synergy
The National Autistic Society Knowing what causes distressed behaviours can help you to develop ways of dealing with them (autism.org.uk 01/25) www.autism.org.uk/advice-andguidance/topics/behaviour
The Challenging Behaviour Foundation The foundation offers support, advice and information about challenging behaviours. www.challengingbehaviour.org.uk
Talking Teens Talking Teens focuses on the difficulties and changes teenagers go through during this developmental phase. For more information visit the Family Hubs Eventbright page on www.eventbrite.co.uk/o/7922835327 Behaviours that may challenge | PAGE 7
Sleep and insomnia….. It is common for children to have difficulties around sleep. These could be difficulties falling to sleep (prolonged sleep latency), difficulties staying asleep (sleep maintenance) or in some cases, both. These difficulties may have been present since early childhood or may have started suddenly. For many, these difficulties are short lived and do not require any specific intervention, but for some children, more support is needed. 0-19 Public Health Service The service is made up of health visiting and school nursing teams. They support and help children, young people and their families and carers. 01226 774411 0-19healthteam@barnsley.gov.uk The Teen Sleep Hub Sleep information and resources for teenagers. www.teensleephub.org.uk Sleep Success Course A four week course for parents with children over 12 month old.
SLEEP FACT: Blue wavelength light can impact on sleep!
Autism Sleep Medication Service For autistic children and young people with who have sleep difficulties as a co-occurring condition. www.barnsleyhospital.nhs.uk/services/community-paediatrics/autism-sleepmedication-service The Children’s Sleep Charity
Bed Advice UK
The charity’s aim is to support families to get a better night’s sleep by offering workshops, clinics and written materials.
For impartial advice on buying beds and mattresses, visit Bed Advice UK. www.bedadvice.co.uk
https://thesleepcharity.org.uk
The Autism Sleep Programme SLEEP FACT: Poor sleep can impact on daytime behaviours. Cerebra Cerebra offer downloadable materials, workshops and one-to-one support through their sleep practitioners. www. cerebra.org.uk/get-advicesupport/sleep-advice-service
As part of the Family Linx and Linx together service delivered by Barnardo’s, this 2 session workshop explores sleep difficulties within autism. 01226 770619 SLEEP FACT: Our Circadian rhythm (body clock) is regulated by light and dark so a bright room could delay sleep onset. Sleep and insomnia | PAGE 8
Toileting support….. We know that all children develop at different rates and will only do things when they are ready and this is no different with toileting. In many cases, the normal everyday toileting strategies work really well and don’t require any specialist intervention. Health Visiting Team
NHS Guide to potty training.
For children under the age of 5, parents are encouraged to seek support and advice from their Health Visitor or Child Development Practitioner (Community Nursery Nurse) around toilet training first.
Using a potty is a new skill for your child to learn. It's best to take it slowly and go at your child's pace. Being patient with them will help them get it right, even if you sometimes feel frustrated.
Tel: 01226 774411
www.nhs.uk/conditions/pregnancy-andbaby/potty-training-tips
Stopbedwetting.org
Bed wetting for children of a school age
A useful website full of information, resources and activities to support difficulties with bedwetting.
If your child bed wets, we would recommend speaking to your school nursing team on:
www.stopbedwetting.org TIP! Don't limit their drinks to help them stay dry as it doesn't work.
01226 774411 You could also discuss this with your child’s GP.
ERIC ERIC offers advice and information around bowel and bladder health of all children and teenagers in the UK. This includes toilet training, bedwetting and constipation.
National Autistic Society
www.eric.org.uk
NAS have a section on their website with basic tips and guidance for toilet training children with autism. This can be found under ‘about autism>health>toilet training”.
Tel: 0845 3708008
www.autism.org.uk
Bladder & Bowel UK NBBUK offers advice, information and resources for children and young people with bladder and bowel problems. www.bbuk.org.uk
CEREBRA As well as sleep advice, Cerebra have published information around toilet training for children with Neurodisabilites. This can be found on the ‘Help and Information’ section of their website. www.cerebra.org.uk
URApp URApp is specially designed to support young people with daytime wetting and urgency.
TIP! Encourage boys to sit down to wee.
www.urapp.org.uk Toileting support | PAGE 9
Emotional wellbeing….. Compass BE
Branching Minds Barnsley
Compass BE works with children and young people in schools across Barnsley and provide confidential support help and advice related to mental health and emotional wellbeing. Referrals are made via Branching Minds.
A new collaboration between local mental health support teams (MHST) and the Child and Adolescent Mental Health Services (CAMHS) has launched in Barnsley. It brings together both services under one roof, helping children, young people and their families get the right support at the right time, whilst providing more seamless care.
www.Kooth.com Free, safe and anonymous mental health and wellbeing support in Barnsley for ages 11-25. Anxiety UK Offers a range of information, advice and courses around anxiety www.anxietyuk.org.uk Cerebra Cerebra have published information around emotional well-being such as: Factsheet: Emotional Wellbeing Managing Stress for Carers and their Families Anxiety Guide: A Guide for Parents These can be found on the ‘Help & Information’ section of their website. www.cerebra.org.uk
URGENT HELP! If you need help for a mental health crisis or emergency, you should get immediate expert advice and assessment by contacting
111 Mood Café Mood Café have collated information and resources relevant to various common psychological problems. If the mood takes you, why not check out their resources, self-help guides and recommended websites: www.moodcafe.co.uk
IMPORTANT NOTE - If you feel that your child is at imminent risk of, or has attempted to harm them self, you must take them to your nearest A&E for assessment. If your child frequently talks about wanting to harm them self, you should speak to your child’s GP about support.
01226 107377 Voice Collective Supporting children people who hear, see or sense things other people don’t. www.voicecollective.co.uk HappyMaps A one stop hub of information on young people’s mental health. www.happymaps.co.uk Young Minds Information, support for parents who are concerned about their child or young person’s mental health. You can speak to us over the phone, or chat to us online. www.youngminds.org.uk CHILYPEP An early support mental health hub for young people. www.chilypep.org.uk Good Grief Trust Helping those affected by grief. www.thegoodgrieftrust.org Emotional wellbeing | PAGE 10
Financial support….. We understand that supporting a child with additional needs can put a strain on family finances. This page will help you find financial support, grants and more. Help for Households | GOV.UK Many of us are facing difficulties with money, housing and food. The Local authority have launched More Money In Your Pocket to support families with the cost of living. www.barnsley.gov.uk/services/benefits/more-money-in-your-pocket-cost-of-livingsupport Sunny Days Children’s Fund
CEA Card
www.dialbarnsley.org.uk
Sunny Days make small grants for day trips, medical equipment, respite, hospital travel etc. www.sunnydaysfund.org.uk
The CEA Card is a national card scheme developed for UK cinemas by the UK Cinema Association (UKCA).
Children today
Merlin’s Magic Wand
Supporting children with additional need to access specialised equipment and support. www.childrentoday.org.uk
A single gifted day out for children to enjoy at one of the Merlin Attractions. Free tickets, travel grants and a simple application process. www.merlinsmagicwand.org
Dial - Barnsley Dial Barnsley have benefit specialists who can support you to make a claim for government benefits.
www.ceacard.co.uk Maxcard Discount card for families of SEND & looked after children. www. mymaxcard.co.uk
Caudwell Children
Public Transport
Caudwell Children provides family support services, equipment, treatment and therapies for disabled children and their families across the UK.
You may be able to apply for a disabled person’s pass from TSY. www.barnsley.gov.uk/pid280
www.caudwellchildren.com Family Fund Grant for raising disabled or seriously ill children and young people. www.familyfund.org.uk Newlife Equipment grants for specialist seating, wheelchairs, beds etc. www.newlifecharity.co.uk
Disability Living Allowance, Carer’s Allowance and Disabled Facilities Grants You could be eligible to apply for support which may help with the extra costs of looking after a child who are under 16 and have difficulties walking or needs much more looking after than a child of the same age who doesn’t have a disability. You will need to meet all the eligibility requirements. For more information visit: www.gov.uk/disability-living-allowance-children www.gov.uk/carers-allowance www.gov.uk/disabled-facilities-grants Financial support | PAGE 11
Education….. If you have any concerns around your child’s education or the support they may need at school including an EHCP, then your first point of call should always be with the school SENCo. SENDIASS
IPSEA
The Special Educational Needs and Disabilities, Information, Advice and Support Service (SENDIASS) offers impartial information, advice and support around issues such as exclusions, issues with school, EHCP support and support with school meetings.
Independent Parental Special Education Advice (IPSEA) offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs and disabilities.
T: 01226 787234 Or visit them at the monthly SEND drop-in; see ‘other support’ section for details.
https://www.ipsea.org.uk
Assessment and Review Service The team works closely with parents, schools and a range of other agencies to facilitate Education Health and Care Needs Assessments, placements, support and funding for pupils with an Education Health and Care Plan (EHCP). Tel: 01226 773966 Barnsley College - Learning Support Team You can talk to the Additional Learning Support Team about your child’s support needs before they apply to College, at enrolment or at any time during their course. www.barnslestudent-life/additionallearning-support 01226 216 769 als@barnsley.ac.uk
Barnsley Portage Service Offer support to children 0 - 4 years of age who have special educational needs and disabilities (SEND) and are not attending a nursery setting. T: 01226 773577 Education Welfare Service www.barnsley.gov.uk/services/childrenfamilies-and-education/schools-andlearning/barnsley-education-welfare-service Tel: 01226 773 545
Targeted Information, Advice and Guidance Service (TIAG) [Ages 13-18yrs]
Really NEET Project
TIAG provides independent and impartial careers guidance to encourage, support and enable young people to get into education, employment and training.
Making education accessible to vulnerable young people aged between 16-24 years of age who have struggled to cope in mainstream education. www.reallyneetproject.co.uk
www.barnsley.gov.uk/services/children-families-andeducation/young-people/information-advice-andguidance or 01226 775 270
[Ages 16-24yrs]
Education | PAGE 12
Support Groups….. If you are looking to meet other parents and carers of children and young people with SEND, below are a few places you may wish to consider. It is important to remember that support groups (physical and online) are not always professional led and can be facilitated by parents, carers or volunteers. These types of groups can be great for speaking with others who have lived experience, to share ideas and learning as well as building social networks. SEND Play Groups / Parent Groups A selection of stay and play sessions, coffee mornings and drop-ins run across the borough which are there to offer social support for children with SEND and their parents. These groups are normally facilitated by a professional worker and occasionally have guest speakers visiting to share information about the service they represent and what they could offer to you. To find out where your nearest group is, contact: T: 0800 0345 340 infoFIS@barnsley.gov.uk
Family Linx | Peer Support Group The peer support group is led by parents and takes place every Friday morning between 09:30 – 11:30am. This group allows parents to meet others in a similar situation, share feelings and experiences, make new friends, learn new ways of coping and more. 01226 770619
Parent Carer Coffee & Chat Are you a parent / carer who looks after a child with additional support needs. If so, the Barnsley Carers Service meet the 2nd and 4th Wednesday of every month at The Priory Centre, S71 5PN. 01226 288 772 www.barnsleycarers.co.uk TYI Monday - is part of the Targeted Youth Support Short Breaks Provision in the Barnsley area who provide a range of creative youth club type activities, opportunities for social interaction, meeting and making new friends, personal and social development and learning new skills. You can access these activities by referral through the short breaks panel.
Sparkle Sheffield Sparkle Sheffield is a local registered charity that supports children and young people from birth to 25 with Autism Spectrum Disorders and other social communication difficulties. www.sparklesheffield.co.uk
Exodus Project | Toddler Group
BSPCA Parent Carer Support Group
Offering a dedicated session for toddlers with SEND, the Exodus project offer a quitter and more tailored experience.
The parent run group meets weekly at the Ozone and is a good way of meeting other parents of children with SEND.
enquiries@exodusproject.org.uk
07340 739965 Support Groups | PAGE 13
Other services….. Young Carers and Sibling Support Service Young carers are children who help look after a member of the family who is sick or disabled. 01226 772423 Sibling Support – SYCLS The service supports siblings of children primarily on the autistic spectrum, who are showing signs of anxiety. sycls.co.uk
Early Help Assessments (EHA) There are lots of reasons why people look for early help. It could be that you’re worried about your child’s health, development, behaviour or education. For more information visit your local family centre, school SENCo or visit: www.barnsley.gov.uk/earlyhelp SIBS Sibs exists to support people who grow up with or have grown up with a disabled brother or sister. www.sibs.org.uk
SEND Local Offer Drop-in An opportunity to meet representatives of local services. Runs the first Wednesday morning of every month at the Ozone (Barnsley Football Club) contact: 0800 0345 340 Autism toothcare Advice and support for families of young autistic children to care for their teeth www.autismtoothcare.com
Bereavement Support A monthly meeting for young people to come together and share experiences around death and loss. Contact Compass-be.org on 01904 666371 for details.
Short Breaks
Early Help Navigator Drop In Sessions
Short breaks are a service that support children with disabilities and their families.
Family Hubs hold a weekly drop in service where you can receive support and guidance from a Family Hub Early Help Navigator.
Visit their information stand at the monthly Local Offer drop-in sessions (see above).
Speak with your local hub for more details.
BEAT The UKs eating disorder charity offer a carers support service. 0808 801 0677 www.helpfinder.beateatingdisorders.org.uk
Autism Assistance Dogs These are for children aged three to ten years with autism. The dogs are trained to provide safety for the child and reduce stress in social environments. www.supportdogs.org.uk Other Services | PAGE 14
Moving into adulthood…. This section identifies some organisations which support the needs of older children and young adults. These range from social activities to employment advice.
Autism Services
Health and Wellbeing
Autism Plus supporting adults and young people with autism, learning disabilities, mental health conditions and complex needs. www.autismplus.co.uk
Anxiety UK A national charity that provides information and advice around anxiety, stress and phobias. www.anxietyuk.org.uk Chilypep Chilypep is a youth empowerment charity based in Sheffield, where we work to empower and improve the lives of children and young people. www.chilypep.org.uk Epilepsy Action Epilepsy Action is a community of people committed to a better life for everyone affected by epilepsy. www.epilepsy.org.uk FRANK Help, information and advice about drugs. www.talktofrank.com 0300 123 6600 The Teen Sleep Hub
I Know I Can IKIC helps young people fulfil their potential and helps make wellinformed decisions about Post-16 options, achieve the qualifications and employability skills they need, participate & succeed in education, employment or training, take ownership of their future.
Sleep information and resources for teenagers. www.teensleephub.org.uk The Sleep Charity Providing advice and information around adult sleep. www.thesleepcharity.org.uk/informationsupport/adults
www.iknowican.org Barnsley Livewell Information about local services, events, training, employment etc. www.livewellbarnsley.co.uk
Mencap Offers information and advice around: Employment Services
Relationships
Accessing financial support Bereavement
www.mencap.org.uk Moving into adulthood | PAGE 15
Further / Higher Education
Sports & Fitness Reds in the Community [Ages 11-19yrs]
Reds in the Community offers Level 1, 2, 3 and Apprenticeship Sports Courses during the year covering a range of abilities for local young people aged 16 – 19. 01226 211 333 education@barnsleyfc.co.uk Disability Sport Reds in the Community, in partnership with Barnsley Council, are providing opportunities for disabled children, young people and adults to participate in sport. Please contact BMBC Information Officer for Children/Young People with Disabilities on: 0800 0345 340 Fitness for All Every Tuesday at the Metrodome for young adults aged 16+ with learning difficulties and/or disabilities. 01226 730060
Barnsley College Additional Learning Support at Barnsley College is here to help you maximise your potential and to progress to the next stage in your career. You can talk to us about your support needs before you apply to College, at enrolment or at any time during your course. We’ll be happy to help. 01226 216 769 als@barnsley.ac.uk Really NEET Project
[Ages 16-24yrs]
Making education accessible to vulnerable young people aged between 16-24 years of age who have struggled to cope in mainstream education. www.reallyneetproject.co.uk
Transition Transition Support Helpline The Transition Support Helpline provides advice and support to young autistic people and their families on making the transition from school, further or higher education to adult life. 0808 800 0027
Autistic Parents UK The only national autistic led charity offering essential support services, resources and education for autistic parents. www.autisticparentsuk.org
Preparing for Adulthood Supporting young people move into adulthood with advice around paid employment, good health, independent living options and friends, relationships and community inclusion www.preparingforadulthood.org.uk (Will divert to the New NDTI page)
Employment Support One to one sessions to help individuals overcome barriers, develop action plans and get started in their search for employment. These FREE sessions are delivered by video call, and include an initial phone call to discuss your needs, and support you to get online for these sessions. employmentsupport@autismplus.co.uk
Hesley Group The Hesley Group provides flexible, specialist residential services and schools. They offer care, education and vocational opportunities for young people and adults with autism, complex needs and behaviours that challenge. www.hesleygroup.co.uk Moving into adulthood | PAGE 16
Autism friendly places…..
Alhambra Shopping Centre, Barnsley The centre has a quiet hour once a month were music is turned off in the centre and lights are dimmed where possible. They have publicly accessible toilets including RADAR facilities. Free WiFi is available for those who rely on distraction devices such as iPads. Customer Services 01226 295355 Meadowhall, Sheffield.
Nova city
The centre has a quiet room available for booking. They also have online Mall Guides for familiarisation, accessible restroom throughout the Mall and free WiFi.
Nova city hold ASD friendly jump sessions, please contact the centre for more details.
They also offer secure device charging points to ensure you are never stuck with a flat battery. Meadowhall is part of the SunFlower Scheme.
Autism friendly screenings are subtly-adapted screenings which create an environment that is welcoming for people with a range of conditions such as autism, learning disabilities and cognitive disorders.
Some stores also offer autism friendly sessions. Customer Services: 0333 313 2000 Barnsley Metrodome The Metrodome offer accessible swim sessions with SEN-trained lifeguards on duty. They also have shower chairs and access facilities available if needed. 01226 730060 Barnsley Museum The museum holds specific sessions for visitors who prefer a quieter, calmer experience, please contact the museum directly for details. 01226 102059 The Deep, Hull The aquarium offers quiet spaces, sensory packs, mobility aids, accessible parking, downloadable social stories and more.
01226 102059 Cinemas
They have sound levels turned down, the lights left on at a low level and there are no trailers at the beginning of the film. Film-goers are free to bring their own food and drinks to the cinema, are able to make noise and to sit where they feel most comfortable. www. accessiblescreeningsuk.co.uk BASE71 Youth Zone Base71 are committed to welcoming young people with a range of additional needs, offering services up to the age of 25 through inclusive ability sessions alongside our mainstream activities. www.base71youthzone.org/what-weoffer/inclusion Tesco The sunflower lanyard is now available in all Tesco stores to customers who may have a hidden disability. Visual guides to shopping are also available and you can download a visual shopping list from their website. www.tesco.com/zones/invisibledisability Autism Friendly Places | PAGE 17
Parental wellbeing….. As parents, we often give all our time, energy and emotions to help our children be the best they can be, access the support they need and meet all their needs. For some families, this hasn’t been an easy journey and facing the daily challenge of managing emotions and behaviours can take its toll on you. Because of this, we often put our own needs aside and don’t address that our life is impacting on our own emotional wellbeing. GP If you are feeling low in mood or anxious about things, then please make an appointment to discuss these feelings with your GP. They will be able to help you assess which support route would be best for you.
MIND MIND offer an information and signposting service with a focus on mental health concerns, accessing help, treatment options and an advocacy service. 0300 123 3393 www.mind.org.uk
Mental Health Access Team If you are concerned about your mental health, or the mental health of a family member or friend, you can ask for help from the Mental Health Service. 01226 644 900
Samaritans Samaritans offer a safe place to talk, 24 hours a day, 7 days a week. T: 116 123
Parent to Parent Emotional Support Helpline Run by the National Autistic Society, Parent to Parent is a confidential telephone service providing emotional support to parents and carers of autistic adults or children. 0808 800 4106 IDAS
URGENT HELP!
IDAS supports anyone affected by domestic abuse or sexual violence. www.idas.org.uk 03000 110 110
If you need help for a mental health crisis or emergency, you should get immediate expert advice and assessment by contacting 111
Self-help tips: ✓ Establish a routine ✓ Challenge yourself ✓ Make time for your friends/partner ✓ Start your day on a positive ✓ Have a healthy sleep schedule ✓ Use breathing exercises ✓ Take breaks from social media ✓ Factor some ‘me time’ into your day ✓ Take daily exercise, even if this is a gentle stroll to the end of the street and back. ✓ Explore mindfulness techniques ✓ Keep talking, never be afraid to share how you feel. www.nhs.uk/condition s/stress-anxietydepression/improvemental-wellbeing
The Umbrella Service
Autistic Parents UK
The Umbrella Service offers five types of support for people with low level mental health problems including Befriending, Housing Support, Peer Support, Counselling and Group work.
The only national autistic led charity offering essential support services, resources and education for autistic parents. www.autisticparentsuk.org
01226 704090
Parental wellbeing | PAGE 18
The Bookshelf….. The following list of books is based on some of the recommendations made by some of our parents and colleagues. Some are for you, the adult, whilst others are to share with your child. AUTISM – 44 ways of understanding: Aspergers syndrome, ADHD, ADD and Special Needs by Margaret Larue – ISBN: 978151503508 This book contains proven steps and strategies about how to help you cope with, understand and communicate with people who have a unique learning disability.
Autism Spectrum Disorder and De-escalation Strategies by Steve Brown – ISBN: 9781849055031 This practical guide provides a complete picture of how non-physical and physical interventions can be used to manage behaviour and keep children with autism spectrum disorders or emotional, social and behavioural difficulties safe.
Autism with Lola by Jodie Isitt, Lor Bingham, et al. – ISBN: 9781913073008 This book is the first to be released in a series and contains some very valuable and exciting advice from professionals!
Everyday games for sensory processing disorder by Barbara Sher – ISBN: 9781623157005 Occupational therapist Barbara Sher has over 45 years experience helping children with sensory processing disorder, autism and Asperger's learn and thrive. In this new solutions-based guide, she's collected 100 sensory-rich games that make working with your child a joy. The fun and functional sensory-motor ideas are easily adaptable to suit all environments, all abilities, all kids and all their grown-ups.
I See Things Differently by Pat Thomas – ISBN: 9780750289481 This reassuring picture book explains what autism is in simple terms, helping children with siblings or classmates with autism understand what everyday life feels like from a child with autism's perspective.
It can get better: Dealing with common behaviour problems by Paul Dickenson and Liz Hannah – ISBN: 9781905722907 This simple, easy to read starter book for parents of young children with autism addresses ways of dealing with common behaviour problems.
Kids in the syndrome mix of ADHD, LD, Autism Spectrum, Tourette’s, Anxiety and More! By Martin L. Kutscher, MD With contributions from Tony Attwood, PhD and Robert R. Wolff, MD – ISBN: 9781849059671. This all-in-one guide covers the whole range of often co-existing neuro-behavioural disorders in children from attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder, and anxiety, to autism spectrum disorders, nonverbal learning disabilities, Tourette's, sensory integration problems, and executive dysfunction.
M is for Autism by The Students of Limpsfield Grange School and Vicky Martin – ISBN: 978184905684 Written by the students of Limpsfield Grange, a school for girls with Autism Spectrum Disorder with communication and interaction difficulties, M is for Autism draws on real life experiences to create a heartfelt and humorous novel that captures the highs and lows of being different in a world of normal.
Managing Family Meltdown: The Low Arousal Approach and Autism by Linda Woodcock and Andrea Page – ISBN: 978-1849050098 Children and adults on the autism spectrum may often behave in ways that cause difficulties for themselves and those who care for them. This book offers effective, long-term strategies to help resolve common challenging behaviours such as physical aggression and self-injury. Managing Family Meltdown provides possible explanations for these behaviours, and offers a wealth of practical tips on how families can tackle different kinds of challenging behaviour.
My brother is Autistic by Jennifer Moore-Mallinos – ISBN: 9780764140440 The Bookshelf | PAGE 19
My Friend Sam: A Story About Introducing a Child with Autism to Nursery School by Liz Hannah and Steve Lockett – ISBN: 9781905722624 My Hidden Chimp by Professor Steve Peters– ISBN: 9781787413719 This book is for helping children understand and manage their emotions, thinking and behaviour. Plan A is for Autism by Caroline Smith – ISBN: 9781909301412 This practical resource provides an original multi-element approach leading to planned individual interventions. Drawn from the author's extensive knowledge of autism it enables those living and working with children with Autism Spectrum Disorders (ASD) to jointly plan for change. Sensory strategies: Practical ways to help children and young people with autism learn and achieve by Laurie Corinna – ISBN: 9781905722884 Starving the Anger Gremlin for Children Aged 5-9: A Cognitive Behavioural Therapy Workbook on Anger Management by Kate Collins-Donnelly – ISBN: 9781849054935 Help children to understand and manage their anger with this fun and imaginative workbook. The Anger Gremlin is a naughty creature and his favourite food is your anger! The more anger you feed him, the bigger and bigger he gets and the angrier and angrier you feel! How can you stop this? Starve the Anger Gremlin of angry thoughts, feelings and behaviours, and watch him disappear! The New Social Story Book by Carol Gray by Carol Gray – ISBN: 9781941765166 Carol Gray’s world-famous Social Stories have helped thousands of children with autism spectrum disorders. This book offers over 180 ready-to-use stories for parents and educators. The Panicosaurus: Managing Anxiety in Children Including Those with Asperger Syndrome by K.I. Al-Ghani - ISBN: 9781849053563 This fun, easy-to-read and fully illustrated storybook will inspire children who experience anxiety, and encourage them to banish their own Panicosauruses with help from Mabel's strategies. Parents and carers will like the helpful introduction, explaining anxiety in children, and the list of techniques for lessening anxiety at the end of the book. The reason I jump: one boy’s voice from the silence of autism by Naoki Higashida , David Mitchell , et al.ISBN: 9781444776775 Provides a rare insight into the often baffling behaviour of autistic children. Using a question and answer format, Naoki explains things like why he talks loudly or repeats the same questions, what causes him to have panic attacks, and why he likes to jump. The Superhero Heart by Christel Land – ISBN: 9781544693750 This story speaks to children who are close to a child with autism; a brother, sister, cousin, friend or classmate. It explains how we are all different to each other, and how the sibling has special powers, which help them in the trickier moments where the child might feel rejection or find it hard to deal with a meltdown. The survival guide for Kids with Autism Spectrum Disorder by Elizabeth Verdick and Elizabeth Reeve – ISBN: 9781575423852 This positive, straightforward book offers kids with autism spectrum disorders (ASDs) their own comprehensive resource for both understanding their condition and finding tools to cope with the challenges they face every day. The Bookshelf | PAGE 20 Women and Girls with Autism Spectrum Disorder by Sarah Hendrickx – ISBN:
Useful Websites….. Below are a few useful websites that you may find helpful or interesting. ambitiousaboutautism.org.uk An online community which offers support and information for parents of a child with Autism. autism.org.uk The National Autistic Society’s website is full of useful information and advice. autism.org.uk/hairdressers Some practical advice around preparing for a visit to the hairdressers. autismeye.com Autism Magazine. autismparentingmagazine.com Autism Magazine. chewigem.co.uk Products for sensory seekers. contact.co.uk A charity for families with disabled children. Offers guidance and information as well as supporting families to campaign, volunteer and fundraise to improve life for themselves or others. disabledliving.co.uk Disabled Living is a charity which provides impartial information and advice about products, equipment (assistive technology) and services. elsa-support.org.uk A website full of information and resources to support children’s emotional literacy. fledglings.org.uk Fledglings provides information about products which may help your child. Net-aware.org.uk Net Aware has partnered with Ambitious about Autism to bring online safety tips, advice and activities specifically for parents and carers of children with SEND. This website gives parents a really good idea about what apps and sites children access and any risks with these. sensetoys.com Supplier of sensory equipment for children with additional needs. skybadger.co.uk Sky Badger is a charity that finds help and adventure for disabled children and their families all over the UK. sensory-smart.co.uk Supplier of seamless socks and other items. snugglesac.com A Snuggle Sac is a specialist sleeping bag designed to replace conventional bedding and can be used every night whether at home or away. Useful Websites | PAGE 21
The video library….. We understand that not everyone likes attending courses or reading books so below, we have collated a few videos that you may find helpful or interesting. We strongly recommend you watch these before showing children so you are aware of the content. Amazing things happen A nice video to help explain autism to siblings and grandparents in a simple way.
https://youtu.be/RbwRrVw-CRo
Autism and Me Autism and Me is a revealing observational documentary that explores the autism spectrum through the experience of others.
Amazon Prime Video
Autism and sensory sensitivity
https://youtu.be/ycCN3qTYVyo
Autism: how anxiety affects everything – Sarah Hendrickx
https://youtu.be/aPknwW8mPAM
Can you make it end? A brief look at how children with ASD may find certain environments too much.
https://youtu.be/aPknwW8mPAM
Chris Packham Aspergers – Complete
https://youtu.be/Mo7STo9seZM
Holly’s assembly See the moment Holly, the star of our viral campaign film, tells her classmates about her autism for the first time.
https://youtu.be/Mo7STo9seZM
Self-Regulation (Self-Control) 5 fun games to teach self-regulation to children.
https://youtu.be/H_O1brYwdSY
Sensory Input Techniques A few simple methods for calming a highly sensitive child in a fun way.
https://youtu.be/4i258YX-6Do
The Reason I Jump (Film) Based on the bestselling book by Naoki Higashida, The Reason I jump is an immersive cinematic exploration of neurodiversity through the experiences of nonspeaking autistic people from around the world.
Amazon Prime Video
What is autism A brief video looking at what autism is.
https://youtu.be/Lk4qs8jGN4U
The Video Library | PAGE 22
App catalogue….. Here are a few smartphone apps that have been recommended by families and professionals working with them. Some of these are suitable for adults whilst others may be OK for children. As always, we strongly recommend checking these before giving young people access. ActiVise What’s Next Communication App. Aqua Fresh App A fun app to encourage children to brush their teeth correctly. Autism Language and Cognitive Therapy with MITA Mental Imagery Therapy App. Brain in hand An app used to help remember activities, reduce anxiety and feel supported. Calm Harm Calm Harm is an app designed to help people resist or manage the urge to self-harm. Chill Panda This family friendly app helps children to gain an understanding of how their bodies respond to different feelings. It aims to develop self-regulation skills and introduces skills. Kids task timer – visual timer for kids An excellent app for giving children visual countdowns, timed activities and pre-warning to events. Mindshift An app designed to help teens and young adults cope with anxiety. Smiling Mind Mindfulness meditation app for young people aged 7+. SNappD SNappD® is a simple to use sleep and nap diary app that allows parents to record sleep statistics and the impact of poor sleep. The app also gives you the option to share results with other people such as your health visitor, school nurse or sleep practitioner. SwiftKey Symbols Communication App. TeenLimit Parental Control This app allows you to control how much screen time your child is allowed and prevents devices being used at certain times of the day/night. URApp URApp is an application designed to support bladder training.
App catalogue | PAGE 23
The Telephone Book….. Below is a list of useful contact numbers. We have left you some space to write down numbers you might feel are important to you. 0–19 Public Health Nursing Services (previously: Health visitors & 01226 774411 School Nursing) Autism Assessment Team
01226 644876
Barnsley Sleep Helpline
01226 704026
CAMHS
01226 644829
Community Paediatrics
01226 644876
Disabled Children’s Team (Social care)
01226 774050
New Street Health Centre, Reception
01226 644801
NHS Urgent Medical Concerns
111
Occupational Therapy Team
01226 644396
Paediatric Epilepsy Team
01226 645180
Physiotherapy
01226 644396
Speech and Language Therapy
01226 644331
The National Autistic Society Helpline
0808 800 4104
Numbers you may need to keep Name and Service
Telephone number
Telephone book | PAGE 24
Professionals involved….. In this section, you may find it helpful to keep a record of all the key professionals involved in your child’s care. This will make it easier when attending appointments or applying for future support. Name of professional
Organisation / service
Contact number / email
Professionals involved | PAGE 25
Acronyms….. We know there are lots of abbreviations used in meetings and reports, some which you may be familiar with, some less so. We have tried to list a few of the more common ones below. ASD or The Spectrum
Autism Spectrum Disorder (Also referred to as Autism Spectrum Conditions, ASC)
ASDAT
Autism Spectrum Disorder Assessment Team
Assessment and Review team.
These are a part of the local authority and deal with your child’s EHCPs.
BESST
Barnsley Educational Specialist Support Team (Formerly known as the ‘Inclusion Team’)
BHNFT
Barnsley Hospital
CAMHS
Child and Adolescent Mental Health Services
EHA
Early Help Assessment (Formerly knows as CAF)
EHCP
Education, Health and Care Plan (formerly known as ‘Statement of Special Educational Needs).
EP
Educational Phychologist
GP
General Practitioner - your family doctor.
GDD
Global developmental delay. The term 'developmental delay' or 'global development delay' is used when a child is delayed in 2 or more areas of their development.
LA
Local Authority (Barnsley Council)
LD
Learning Disability
NAS
National Autistic Society
OT
Occupational Therapist
SALT
Speech and Language Therapist
SCI Team
Social Communication and Interaction team – A part of the BESST team.
SEN
Special Educational Need
SENCo / SENDCo
Special Educational Needs Coordinator within school/nursery.
Acronyms | PAGE 26
Appointment diary….. We appreciate keeping a track of multiple appointments can be difficult. Therefore, we have created a space below for you to keep a track of future appointment for your child. These don’t have to be with us, you can use this as you feel best. Date 01/03/25
Time With Dr Hollings, Growth 2pm Clinic
At Woodhouse Centre
Reason
Attended
Routine followup
✓
Appointment diary | PAGE 27
Notepad….. Here you may want to jot down things you want to next ask in clinic, list things you need to follow up or even make notes about what’s happening next. This is your space, it’s up to you how you choose to use it.
Notepad | PAGE 28
Author: Matt Smith, Specialist Autism Practitioner Date First Published: January 2019
Last Reviewed/Update: 01.05.2026