Resources for Autism

april-is-autism-awareness-month-words-flat-lay-sty-L86LDUJ (1)

Quick links

 

Autism is a complex neurodevelopmental condition that is defined by three key features:

  • Communication difficulties
  • Social interaction/engagement difficulties
  • Repetitive and restrictive behaviours

It is a spectrum disorder therefore each autistic person will have their own mannerisms and ways in which they engage with the world around them.

There is a lot of information on autism online however real person contact is the only way to truly understand an individual.

1 in 4 of us experience mental health issues at some point in our lives but for autistic people, anxiety and depression are highly prevalent, in the context of wider social factors including parent carer/ family wellbeing mental health plays an important role. Children are totally dependent on their parents, parental mental health and wellbeing therefore have a direct impact on the child’s wellbeing, caring for an autistic child come with additional stressors including sleep deprivation, anxiety, stress and depression.

Caring for an adult autistic child brings with it the needs to understand what is available in terms of housing, benefits and legislation which will help their adult child to live more independently and to receive the best possible health and social care.  This in addition to maintaining a healthy mental state and physical wellbeing.

Like most parent carers I confess this is a challenge, I recall spending hours and at times months trying to understand what I could access and what was available for me and my daughter. What I needed was a list of resources… so I’ve put this together to help you.

 

Autism

What is Autism in Urdu

https://www2.le.ac.uk/departments/psychology/research/child-mental-health/res-projects/asd/asd-ur

 

Autism information translated in Portuguese

https://youtu.be/Bf6ZEXr9TRc

https://youtu.be/Lk4qs8jGN4U

What does severe autism look like  https://youtu.be/nwBLa8MD1OM

 

The National Council for Severe autism (US)

https://www.ncsautism.org/

 

The National Autistic Society (UK)

https://www.autism.org.uk/

 

Autism diagnosis NHS guidelines

https://www.nhs.uk/conditions/autism/getting-diagnosed/assessments/

 

What is Autism? My health passports

https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/autism/

 

Easy read information Autism

https://www.nhs.uk/conditions/autism/easy-read-and-videos/

 

Challenging behaviour foundation

https://www.challengingbehaviour.org.uk/

 

NHS guidance on challenging behaviour, ADULTS

https://www.nhs.uk/conditions/social-care-and-support-guide/practical-tips-if-you-care-for-someone/how-to-deal-with-challenging-behaviour-in-adults/

 

NHS guidance on Challenging behaviour, Children

https://www.nhs.uk/conditions/social-care-and-support-guide/caring-for-children-and-young-people/how-to-deal-with-challenging-behaviour-in-children/

 

The National Autistic Society Local branch

http://naspeterborough.webeden.co.uk/

 

 

Autism and Mental health resources

LOCAL NHS URGENT MENTAL HEALTH HELPLINE (ENGLAND ONLY)

NHS urgent mental health helplines are for people of all ages.

You can call for:

  • 24-hour advice and support
  • for you, your child, your parent or someone you care for help to speak to a mental health professional
  • an assessment to help decide on the best course of care

Website: https://www.nhs.uk/service-search/mental-health/find-an-urgent-mental-health-helpline

 

THE CAMPAIGN AGAINST LIVING MISERABLY (CALM)

One of the UK’s leading movements against suicide, CALM provide free and confidential phone lines and webchats from 5pm until midnight 365 days a year.

Telephone: 0800 58 58 58

Webchat: https://www.thecalmzone.net/help/webchat/

Radio X and CALM Mental Health Toolkit: https://www.thecalmzone.net/2020/12/radio-x/

Website: https://www.thecalmzone.net/help/get-help/

 

MIND

Telephone lines offering information and signposting:

Info Line

Open 9am-6pm Monday to Friday (closed on bank holidays). Providing general information and signposting for mental health conditions.

Telephone: 0300 123 3393

Email: info@mind.org.uk

Text: 86463

Post: Mind Infoline, PO Box 75225, London, E15 9FS

Website: mind.org.uk

 

Legal Line

Providing legal information and general advice on mental health related law including being detained under the Mental Health Act (sectioning), mental capacity, community care, and discrimination and equality.

Telephone: 0300 466 6463

Email: legal@mind.org.uk

Post: Mind Legal line, PO Box 75225, London, E15 9FS

 

NO PANIC

Helplines for those who experience panic attacks, phobias, obsessive compulsive disorders, and other anxiety related conditions.

Helplines are open 10am-10pm 365 days of the year.

Telephone: 0300 7729844

Crisis Message Guided Breathing Exercise: 01952 680835

Youth Helpline (for 13 to 20 year olds) Monday, Tuesday, Friday 3pm-6pm; Thursday 3pm-8pm; Saturday 6pm-8pm: 0330 606 1174

Website: https://nopanic.org.uk/

 

PAPYRUS

Providing confidential support and advice to young people (under 35) experiencing suicidal thoughts, and those worried about young people.

Lines are open 9am-midnight 365 days a year.

Telephone: 0800 068 4141

Text: 07860039967

Email: pat@papyrus-uk.org

Website: https://www.papyrus-uk.org/

 

RETHINK MENTAL ILLNESS

Information and advice services open Monday to Friday 9:30am-4pm.

Telephone: 0808 801 0525

Email: advice@rethink.org

Post: RAIS, PO Box 17106, Birmingham, B9 9LL

Website: https://www.rethink.org/

 

SAMARITANS

Providing 24/7 support to those in a mental health crisis.

Telephone: 116 123

Website: https://www.samaritans.org/

 

YOUNG MINDS

Supporting young people with mental health conditions and their parent/carers.

Young People

Lines are open 24/7

Text: YM to 85258

Parent/Carer

Lines are open Monday-Friday 9:30am-4pm

Telephone: 0808 802 5544

Webchat: https://youngminds.org.uk/find-help/for-parents/parents-helpline/#parents-webchat

Website: https://youngminds.org.uk/

 

HEAD ABOVE THE WAVES

A website containing a number of self-help resources for those with mental health conditions.

Website: https://hatw.co.uk/straight-up-advice/

 

NHS England

https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/

 

 

Carer support resources

Carer UK

020 7378 4999 E info@carersuk.org

https://www.carersuk.org/

 

Caregiver stress and burnout

https://www.helpguide.org/articles/stress/caregiver-stress-and-burnout.htm

 

Direct Payment information

https://www.nidirect.gov.uk/articles/direct-payments

 

Social care and support information

https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/personal-budgets/

 

Personal Budgets and direct payment

https://www.ageuk.org.uk/globalassets/…

 

Apply for direct payments

https://www.gov.uk/apply-direct-payments

 

Information on direct payments

https://www.brighton-hove.gov.uk/sites/default/files/adult%20social%20care/PeoplePlus%20direct%20payments%20leaflet%20-%2013%20Aug%202019.pdf

 

What are direct payments?

https://www.citizensadvice.org.uk/wales/family/looking-after-people/direct-payments-w/direct-payments-what-are-they-w/

 

SEND Resources

What is a ECHP?

https://www.gov.uk/children-with-special-educational-needs/extra-SEN-help

https://www.goodschoolsguide.co.uk/special-educational-needs/legal/getting-an-ehcp

https://educationadvocacy.co.uk/what-is-a-ehcp/

https://www.ipsea.org.uk/pages/category/education-health-and-care-plans

https://assets.publishing.service.gov.uk/government/uploads/….

 

HOW TO APPEAL ECHP

https://www.gov.uk/appeal-ehc-plan-decision

https://www.ipsea.org.uk/how-to-submit-an-appeal-general-advice

https://www.scope.org.uk/advice-and-support/challenging-ehcp-decision/

 

 https://www.autism.org.uk/directory/p/peterboroughsend-partnershipservice

 

Contacts

Marion Deeley – SEND Partnership Officer

Phone: 01733 863979

Email: pps@peterborough.gov.uk

 

Claire Nunn – Specialist teacher

Phone: 07920160298

Email: Claire.nunn@peterborough.gov.uk

 

Jill Groutage – Specialist teacher

Phone: 01733 864009 / 07920169218

Email: Jill.Groutage@peterborough.gov.uk

 

Peterborough City Council Learning disability Board

Ralph Middlebrook – Improvement and Development Manager

Phone: 01733 758432

Email: Ralph.Middlebrook@peterboroughpct.nhs.uk

 

The EarlyBird Parent Programme supports parents and carers of pre-school aged children (under five years) with a diagnosis of autism.

The programmes are held over approximately 3 months and aim to support families to:

*Understand autism and how children experience the world around them,

*Develop interactions and communication with their child,

*Understand their child’s behaviour.

Peterborough Early Bird Programme

Sarah Bernard

01733 864 720

sarah.bernard@peterborough.gov.uk

 

If you would like to help Peterborough City Council support individuals with autism and have a say about services that are provided, then you can join our group.

All the meetings are held in accessible venues in Peterborough and take place every three months. Come along and make your voice heard.

If you are interested in joining the Autism Strategic Group, please contact:

adultsocialcarecommissioning@peterborough.gov.uk

Alternatively, if you would like any further information you can call the Direct Payment Support Service and ask to speak to Chris De Wilde on 01733 342683 or chris.dewilde@pcvs.co.uk

Peterborough City Council Autism information

https://fis.peterborough.gov.uk/kb5/peterborough/directory/site.page?id=cB6Wg9TqIMA

 

 

 

Join the fastest growing digital autism community and receive immediate help wherever you are on your autism journey.

Download the App to receive DAILY autism support , advice, tips, strategies and more from autism professionals, consultants and parents.

HELPING you wherever you are on your autism journey.

Join the fastest growing online autism community TODAY:

APP Store: https://apps.apple.com/app/id1472577729

GooglePlay: https://bit.ly/2JVc8PN

 

 

Resources to aid communication

NHS Peterborough and Cambridgeshire Speech and Language therapy

https://www.cambscommunityservices.nhs.uk/what-we-do/children-young-people-health-services-cambridgeshire/specialist-services/childrens-speech-and-language-therapy

The Peacock Centre

Brookfields Campus

Mill Road

Cambridge CB1 3DF

0300 029 50 50

01223 218061

 

Makaton Charity

https://makaton.org/TMC/Learn_Makaton/Other_workshops/Safeguarding

 

Picture exchange communication system

https://nationalautismresources.com/the-picture-exchange-communication-system-pecs/

 

Easy read COVID information

https://www.mencap.org.uk/advice-and-support/coronavirus-covid-19

 

My health passport

https://media.gosh.nhs.uk/documents/My_Hospital_Passport.pdf

https://media.gosh.nhs.uk/documents/My_Hospital_Passport_guidance_notes.pdf

Easy read information to take to GP appointments

https://www.mencap.org.uk/sites/default/files/2017-03/Mencap%20Don%2527t%20Miss%20Out%2015.03.17.pdf

 

Peterborough Local support

 

Peterborough City Council

https://fis.peterborough.gov.uk/kb5/peterborough/directory/service.page?id=iTrxP_tXww4

Little Miracles

Little Miracles is a charity that supports families that have children with additional needs, disabilities and life limiting conditions. Just like everyone else these children need a place to play, laugh and create friendships – Little Miracles provides this whilst the families are able to access the advice, support and care that they deserve.

In the UK, there are 800,000 disabled children under the age of 16 – this is approximately one child in every twenty yet the majority of families that we work with report feeling like they are alone in their journey.

Little Miracles exists to reduce this isolation and to ensure that families get the support that they need in order to support their families fully.  Our activities and Family Support Workers provide a lifeline to the families and their children with the varied support that we are able to offer.

We support the whole family including parents, carers, the child with additional needs as well as the siblings and any family can receive support even before they receive the formal diagnosis.

Never be afraid to ask for help

If you have a child with additional needs it can be hard and it is okay to recognise that.

People often genuinely want to help but often do not know what to do or what to say what the families we work with have told us is that it is important to accept offers of help but also to let people know what they can do to help you.

From a practical point of view there may be benefits that you are entitled to and you can visit www.gov.uk to find out more about these or speak to one of our Family Support Workers who will be able to help you in finding out what you are entitled to both financially and also about other charities and organisations that can help as well as making the relevant applications with you.

 

Contact Name

Little Miracles

Telephone

01733 262226E-mail

michelle@littlemiraclescharity.org.uk

Website

www.littlemiraclescharity.org.uk

 

Family voice is a local registered charity who are actively seeking to improve services in all areas of the lives of children and young people with disabilities or additional needs. We are here for Parents and Carers of children and young people aged 0—25 years with a disability or additional needs.

They aim to work together with professionals and parents so that the services for our children and young people meet their needs. Putting parent carers and their children at the centre and helping them to be heard.

They are currently involved and participating in the SEND reforms. FVP parent reps and trustees attend Strategic meetings in relation to various strands of the reforms. This is ongoing and parent carers can directly participate by contacting the council via the feedback page on the Local Offer. Click here to visit Peterborough City Councils Local Offer

 

Their services include

Help parents engage with professionals across Health, Education and Social Care.

Facilitate participation in service delivery.

Provide a voice for parents at strategic level meetings.

Hold informative events.

Help parents and carers have access to the information about what services are available to them.

Signpost parents and carers to other agencies/ organisations who provide specifc services that we do not.

Provide family based trips and activities.

Run a community centre.

Provide short breaks.

Goldhay community centre

105 Paynels

Orton Goldhay

Peterborough

PE2 5QP

http://www.familyvoice.org/

 

 

Autism and Medication

Information

There is no cure for autism spectrum disorder, and there’s currently no medication to treat it. But some medicines can help with related symptoms like depression, seizures, insomnia, and trouble focusing. Studies have shown that medication is most effective when it’s combined with behavioral therapies

Some people with learning disabilities are given psychotropic drugs for the treatment of the range of mental illnesses that occur in the population more widely. Research evidence has shown that most of these conditions are more common in people with learning disabilities

https://www.gov.uk/government/publications/psychotropic-drugs-and-people-with-learning-disabilities-or-autism/psychotropic-drugs-and-people-with-learning-disabilities-or-autism

https://www.psychologytoday.com/gb/blog/caring-autism/201808/autism-when-consider-medications

https://www.nice.org.uk/guidance/qs51/chapter/quality-statement-6-treating-the-core-features-of-autism-medication

https://www.nice.org.uk/guidance/cg142/documents/autism-in-adults-nice-guideline2

 

Melatonin – Sleep

https://www.nhs.uk/medicines/melatonin/

 

Risperidone- Distress, anxiety

https://bnfc.nice.org.uk/drug/risperidone.html

 

Epilepsy and Autism

Between 3 and 6 out of every 10 people with a learning disability will have a sleep disorder. This is often undiagnosed. It’s important to get this treated as it may well be making the person have more seizures.

Epilepsy Action

freephone helpline

0808 800 5050

 

Peterborough City Hospital

This Department is managed by North West Anglia NHS Foundation Trust

Neurology Department

01733 673549

 

 

Information

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5739118/

Treatment

https://www.nhs.uk/medicines/carbamazepine/

https://www.autistica.org.uk/downloads/files/Epilepsy-autism-E-LEAFLET.pdf

https://www.epilepsy.org.uk/info/carers/learning-disabilities/easy-read-and-audio

 

Incontinence Help/ Pads

The Continence Adviser has information leaflets and also samples of products which may help you. Arrangements can be made to see you at home if necessary.  Continence Clinics are held at Peterborough City Hospital , they offer advice and support to professionals and the general public. Incontinence aids cannot be prescribed by your GP or dispensed by a pharmacist under the NHS. They can be provided free of charge by the continence team but usually only after a three month assessment and treatment plan. If you wish to discuss bladder or bowel problems you can contact the team direct on Tel: 01733 466664.Telephone advice is available 9:00am to 10:00am weekdays, at other times there is an answer phone.

Incontinence aids for children Where appropriate following an assessment they will be provided for children from the age of 4 years. The Peterborough Health Authority does not supply incontinence aids for children with uncomplicated night time bed wetting.

 

The Bladder and Bowel Foundation, operates a confidential national helpline          Tel: 0845 3450165 Monday-Friday office hours, answerphone at other times

How to get NHS help for incontinence

https://fis.peterborough.gov.uk/kb5/peterborough/directory/advice.page?id=inSft8e0kME

 

Disability Peterborough

https://www.disabilitypeterborough.org/health-services/

John Mansfield Campus

Western Avenue

Dogsthorpe

Peterborough PE1 4HX

Tel: 01733 265551

Email: info@disabilitypeterborough.org

https://www.cambscommunityservices.nhs.uk/docs/default-source/leaflets—special-needs-school-nursing—april-2015/0397—continence-and-austism—oct-2015.pdf

 

Pinpoint

https://www.pinpoint-cambs.org.uk/useful-information/health-hospitals-cambridgeshire/continence-service-cambridgeshire/

01480 877333

Email: information@pinpoint-cambs.org.uk

 

Day services in Peterborough

Zest Day Centre for Adults with Learning Disabilities

Unit 4

Prospect Place

Peterborough

PE1 6QP

01733 560010

ERUM@ZEST-RTL.COM

 

City College Peterborough Supported Employment

441 Lincoln Road

Peterborough

PE1 2PE

01733 797700

01733 797710

 

Friendly Faces

07514043455

 

City college Peterborough Day Opportunities

Fis.peterborough.gov.uk

 

Peterborough and District REMAP

01223 872227

About Nazreen Bibi
About Nazreen Bibi

As a CEO, a parent carer, activist/campaigner and a registered mental health nurse with many years of experience working with autistic children and adults, I am passionate and committed to developing a service which is evidence based and reflects the needs of our local population in Peterborough

Leave a Reply

Your email address will not be published. Required fields are marked *