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Support groups / forums / information - National and Local information for parents/carers

 InforDue to the very high demand re telephone calls to the Community Paediatrics Service, unfortunately, we cannot always respond to all queries. Therefore please find a helpful link which will give you lots of helpful information and signposting to National and Local websites, groups, forums and information which we hope you will find really helpful:

Att 1 COVID Leaflet

Due to the coronavirus outbreak the Community Paediatric child development centres at Heartlands, Park House, Bacchus Rd and Allenscroft have closed until further notice for all face to face appointments, so please do not travel to sites. This is for your safety and for the safety of all our staff, following current National Guidance.

National Sources of Information for Families 

There are a number of National organisations that provide information and advice via their websites. These include:

ADHD

NHS treatment information

Click here for more information.

Living with ADHD

Whether you have been diagnosed with ADHD, or are the parent/carer or teacher of someone who has the condition, this website will help you face the challenges you may have and address any questions and concerns. Click here for more information

The ADHD Foundation

The ADHD Foundation works to improve emotional well being, education, behaviour and life changes through a better understanding of ADHD. Click here for more information.

Addiss

The National Attention Deficit Disorder Information and Support Service provide friendly information and resources about ADHD to parents, carers and those with the condition. Click here for more information.

Autism

Autism West Midlands

Autism West Midlands use passion and expertise to enrich the lives of people on the autistic spectrum and those who care for them. Click here for more information.

Resources for Autism

Resources for Autism provide practical services for children and adults on the autistic spectrum and for those who love and care for them. Click here for more information.

Autism

Provide local specialist services for autistic people, their families and carers. Click here for more information.

National Autistic Society (NAS)

The leading UK charity for those with autism and their families, providing information, support and other services. The NAS will often run short courses locally and it would be worth enquiring about their programmes. They have a helpline, and also offer services such as befriending.

Tel: Autism Helpline 0808 800 4104

Email: www.autism.org.uk/enquiry

Website : www.autism.org.uk/

Autism Education Trust

The AET is a not for profit programme led by two national autism charities – the National Autistic Society and Ambitious about Autism. Established and supported by the Department for Education, the AET promotes and supports partnerships throughout the education system to improve educational access, experience and outcomes for children and young people with autism.

Website: www.autismeducationtrust.org.uk/

www.autismeducationtrust.org.uk/resources/

Understanding an Autism Diagnosis

You may wish to explore some books which may help in considering how best to talk about this new diagnosis – examples include:

  • I am Utterly Unique: Celebrating the Strengths of Children with Asperger Syndrome and High-functioning Autism by Elaine Marie Larson
  • Different Like Me: My Book of Autism Heroes by Jennifer Elder .

An information sheet for the family regarding sharing an autism diagnosis is also available on the National Autistic Society website.

The website for Autism Education Trust has information in a range of formats, including film blogs of young peoples’ experiences of receiving their diagnosis.

Website: https://www.autismeducationtrust.org.uk/receiving-and-understanding-a-diagnosis/

Females on the Spectrum

  • Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-Teen and Teenage Years by Shana Nichols
  • Aspergirls: Empowering Females With Asperger Syndrome by Rudy Simone
  • I am Aspien girl: the unique characteristics, traits and gifts of females on the Autism Spectrum by Tania A. Marshall
  • Asperger's and Girls: World-Renowned Experts Join Those with Asperger's Syndrome to Resolve Issues That Girls and Women Face Every Day!  by Tony Attwood, Temple Grandin et al.
  • Life on the Autism Spectrum - A Guide for Girls and Women by Karen McKibbin
  • Parenting Girls on the Autism Spectrum: Overcoming the Challenges and Celebrating the Gifts by Eileen Riley-Hall
  • Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age by Sarah Hendricks

The Girl with The Curly Hair: https://thegirlwiththecurlyhair.co.uk/ The Curly hair Project was founded by autistic author and entrepreneur Alis Rowe to support people on the autistic spectrum and those around them. Alis has written a series of

which include:

  • Asperger's Syndrome in 13-16 Year Olds: by the girl with the curly hair: Volume 2 (The Visual Guides)
  • Asperger's Syndrome and Anxiety: by the girl with the curly hair: Volume 8 (The Visual Guides)
  • Asperger's Syndrome Meltdowns and Shutdowns: by the girl with the curly hair: Volume 3 (The Visual Guides)
  • Asperger's Syndrome: Social Energy: by the girl with the curly hair: Volume 5 (The Visual Guides)

 

Information from your local service

Birmingham Community Healthcare

Website: https://www.bhamcommunity.nhs.uk/patients-public/children-and-young-people/-people/

Autism West Midlands

Autism West Midlands provide downloadable information sheets about a variety of issues including resources around visual cues.

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

Link: https://www.autismwestmidlands.org.uk/online-resources/information-resources/

Link: https://www.autismwestmidlands.org.uk/online-resources/visual-resources/

There is also a link with details for a local support group:

Link: https://www.autismwestmidlands.org.uk/events/

Cerebral Palsy

Scope

Scope provides practical advice and emotional support while promoting a vision of equality. Click here for more information.

HemiHelp

HemiHelp supports children, young people and their families with events, support services and raising awareness. Click here for more information.

Challenging behaviour

Family Lives

This website provides support and advice to parents of children who have challenging behaviour. Click here for more information.

Downs syndrome

Downs syndrome

Resources, support and facts on downs syndrome to help both those who have the condition and their families. Click here for more information.

Gender identity 

Gender Identity Development Service

The Gender Identity Development Service is a specialised clinic for young people presenting with difficulties with their gender identity. Click here for more information.

Hearing 

National Deaf Children’s Society

The National Deaf Children’s Society is the leading charity dedicated to creating a world without barriers for deaf children. Click here for more information.

Information and Resources for Schools

It will be important for your child’s school to have a good understanding of the difficulties associated with autism in order to offer targeted support and ongoing skills teaching. This should include adapting staff communication, using visual supports, providing structure, routine and consistency with particular consideration of planning, preparation and support that might be needed around less structured parts of the day, change and transitions. For example, she may need particular support at the beginning and end of the day and may benefit from the opportunity to go to a small relaxing room with a familiar adult or group of children at these times to engage in an activity she enjoys in a calming environment before the busy school day begins.

It may be helpful for you and your child to complete a ‘passport’ which will act as a brief summary of your child’s needs and preferences. If your child is transitioning to or already in a secondary setting you may request that it is copied to all staff involved with their care and education.

Call Scotland have a range of examples and templates on their website:

website: www.communicationpassports.org.uk

The National Autistic Society produces a Passport to individual autism support, which may be useful for young adults transitioning to college settings or training and a Hospital Passport for those who may need hospital treatment of some form.

The use of autism specific resources such as visual timetables, social stories and comic strip conversations are likely to be particularly helpful. It is also important to recognise the potential impact of sensory processing difficulties in coping with the school environment and information and guidance is available on the National Autistic Society

website http://www.autism.org.uk/sensory

National Autistic Society

There are many excellent documents for schools outlining good practice for support for pupils with autism in mainstream schools and details of these can be found on the National Autistic Society

Link: www.autism.org.uk/professionals/teachers.aspx

Girls on the Spectrum

National Association of Special Educational Needs (NASEN) has produced a free useful guide which identifies key issues for girls on the spectrum and provides practical school-based support strategies

http://www.nasen.org.uk/resources/resources.girls-and-autism-flying-under-the-rada.html 

School Transitions

Many autistic children find transitions difficult, especially the transition from primary to secondary school. Careful consideration should be given to what support they may need before, during and after the transition. This can be discussed with the SENCO at your current school and the SENCO at the new secondary school, once this has been identified. Transition support may include extra visits, visual supports, any summer school activities offered etc In relation to secondary transition, there is a very useful document entitled Children with autism accessing the curriculum at key stage 3 and 4, which can be downloaded free and contains subject-specific guidance (this can also be found by a Google search for the document title)

Links: http://webarchive.nationalarchives.gov.uk/20110218194057/teachernet.gov.uk/wholeschool/sen/teacherlearningassistant/ASDKS34/

Resources for Autism

A Charity providing practical service for children and adults with a diagnosis of autism and for those who love and care for them.

Website: https://resourcesforautism.org.uk/

Children’s Information and Advice Service (CIAS)

A free, confidential and impartial advice, support and guidance on all aspects of child care and a wide range of services that support children, young people and families.

Website: https://www.birmingham.gov.uk/cias

Multi-sensory impairment 

Sense

Sense provide support in helping people communicating and expressing themselves no matter how complex their disability. Click here for more information.

Multi-sensory resource pack

An information resource for parents and carers of children who have a multi-sensory impairment. Click here for more information.

Sensory Differences

There are a range of sources of information for parents and young people on how autism and sensory issues overlap. The National Autistic Society has information on its web site

website: www.autism.org.uk/about/behaviour/sensory-world

And the Autism Education Trust has produced this more detailed explanation in conjunction with East Essex County Council

Links : http://www.aettraininghubs.org.uk/wp-content/uploads/2014/05/sensory-issues-in-autism.pdf

There are also many books available that talk about the sensory systems, how sensory differences can impact on behaviour and what techniques can be used to help manage sensory issues.

  • The Out-Of-Sync Child: Recognizing and Coping with Sensory Processing Disorder. By Carol Stock Kranowitz, M.A.
  • The Out-Of-Sync Child Has Fun: Activities for kids with Sensory Processing Disorder. By Carol Stock Kranowitz, M.A.
  • Too loud too bright too fast too tight: What to do if you are sensory defensive in an overstimulating world. By Sharon Heller, PH.D.

 

Advice on understanding and managing sensory processing difficulties is also available on the CYPF toolkit

https://www.berkshirehealthcare.nhs.uk/our-services/childrens-healthcare/cypit-toolkit-the-school-years/

Social Understanding

Your child may need ongoing support with developing social understanding. There are a number of useful resources which you and school may wish to explore.

These include:

Understanding the unwritten rules of friendship by E Kennedy-Moore & N Madorsky Elman

Friends Forever: How Parents Can Help Their Kids Make and Keep Good Friends by Fred Frankel

Social Skills Success for Students with Autism/ Aspergers: Helping Adolescents on the Spectrum Fit In by F Frankel, F & JJ Wood

Friendships: The Aspie Way by Wendy Lawson

Using Visual Cues

Autistic children often benefit from the use of visual cues. These can be used to support planning, manage changes or support communication. A range of visual cues can be accessed here:

Website: www.asdinfowales.co.uk/picture-cards

Website: www.autism.org.uk/about/strategies/visual-supports.aspx

Emotional Regulation

Some children may benefit from ongoing support in developing problem-solving skills, including perspective taking. You may find the following books useful:

  • The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross W. Greene
  • Interactions and Controlling Their Emotional Responses by Kari Dunn Buron & Mitzi Curtis

 

Children who experience anger or anxiety may benefit from learning the warning signs of when the anger or anxiety is beginning to build; as well as a clear plan of what works to calm herself down at each stage.

This is a useful resource:

  • The Incredible 5-point Scale: Assisting Children with ASDs in Understanding Social Interactions and Controlling Their Emotional Responses by Kari Dunn Buron & Mitzi Curtis

 

Eating

Parents of autistic children often have concerns about their restricted eating patterns.

You may find the resources on Zoe Connor’s website (paediatric dietitian with an interest in autism) useful to manage concerns around eating.

Link : http://www.zoeconnor.co.uk/downloads/

The National Autistic Society also has some specific information regarding why autistic young people may have difficulties with eating.

website: http://www.autism.org.uk/about/health/dietary-management/restricted-diet.aspx

The charity SEED is and Eating Disorder Support Service and can offer a range of support and guidance

website : https://seedeatingdisorders.org.uk/services

Neurological disabilities

Neural

The Neural organisation are the collective voice for the 80 organisations campaigning together to transform outcomes for those with neurological conditions. Click here for more information.

Sensory impairment

BID Services

BID Services are a charity who work in partnership with children, young people, adults and their families/carers who are deaf, hard of hearing, visually impaired or have a dual sensory loss. Click here for more information.

Sleep

Cerebra

This website provides advice on how to get a better night’s sleep. Click here for more information.

Sleep

There is a strong link between sleep difficulties and autism and over time these may have an impact upon behaviour and learning and, in some cases, emotional and physical well-being; difficulties can include, falling asleep, staying asleep, sleepwalking and talking, enuresis (bed-wetting) and dreaming.

The National Sleep Foundation has a wide range of advice and guidance:

Website: https://www.sleepfoundation.org/

The National Health Service produces a sleep diary and sleep hygiene advice:

website: www.nhs.uk/Livewell/insomnia/Documents/sleepdiary.pdf

The Children’s Sleep Charity offers training and workshops specifically focussed on the sleep needs of families of autistic children.

Website : www.thechildrenssleepcharity.org.uk

Cerebra can also offer support and advice on sleep

Website: www.cerebra.org.uk

Support for families with disabled children

Birmingham's Local Offer

The Birmingham Local Offer will provide you with support and information on special educational needs. Click here for more information.

Contact

Contact support families with information and guidance, as well as bringing them together. Click here for more information.

Medical information:

For more treatment and medical advice, please click here.

Special Educational Needs and Disability (SEND)

Every child and young person aged 0-25 with a special educational need and/or disability(SEND) in Birmingham will have the opportunity to be happy, healthy and achieve their fullest potential, enabling them to participate in, and contribute to all aspects of life, click here for more information.

Click here to go back to the community paediatrics page. 

Financial and Mobility Assistance

Disability Living Allowance (DLA)

If your child is under 16 you may be eligible to apply for Disability Living Allowance (DLA) on behalf of your child.

Website: www.gov.uk/disability-living-allowance-children/overview

Personal Independence Payment

Those over the age of 16 may be eligible for Personal Independence Payment

Website: https://www.gov.uk/pip

From 30 August 2019, the Blue Badge Scheme to support mobility was extended to individuals with a non-visible difficulty such as autism. Eligibility criteria for the scheme can be found at:

Website: www.gov.uk/government/publications/blue-badge-can-i-get-one

Siblings and peers

There are also resources to help your child’s peers or siblings begin to understand autistic differences. Teifi and Friends is a cartoon which shows some of the difficulties an autistic person may have and promotes acceptance:

Website: www.asdinfowales.co.uk/teifi-and-friends-2

Autism Superheroes is a comic strip book which aims to increase awareness of autism in children.

Website: www.asdinfowales.co.uk/autism-superhero

Sibs is a charity supporting siblings of children with a range of difficulties including SEN, autism or other serious long term condition. They offer information and advice to parents and professionals on who to support siblings.

Website : www.sibs.org.uk

Birmingham Carers Centre provides support, information and advice to people who care for friends and family with disabilities.

Website: https://forwardcarers.org.uk/local-services/birmingham/

Occupational Therapy

Website: https://www.bhamcommunity.nhs.uk/patients-public/children-and-youngpeople/services-parent-portal/paediatric-occupational-therapy-service/

If you are waiting for a new or a follow up appointment and you are concerned about your child’s health please contact your GP, call 111 or 999 if an emergency.