TOP TIPS

For working with Children and Young People with Autism

Matthew is a valued and enthusiastic member of the FJYPB as well as being a part of other youth groups in his local area. He has experience of private law proceedings and has Asperger Syndrome.

From his experience of working with various professionals Matthew has produced a series of TOP TIPS that help him feel at ease and able to effectively engage in services. Matthew would like to share these with all professionals who work with him and other children and young people who have Autism.

•I like professionals to talk to me calmly. 1

•Don’t talk over me, let me finish talking first and wait for me to answer your questions. 2

•Don’t treat me or speak to me like a baby. 3

•Give me simple questions so I don’t get confused. 4

•Always use eye contact and ask me if I understand. 5

•Never try to force me to do things I don’t want to do. 6

•Never make false promises. If you’re doing something I will always think it is a promise. 7

•I like it when I am given good feedback. 8

•I don’t tend to show much emotion if any at all. 9

•I am a creature of habit and I like routine. 10

•When I get upset I like to be left alone in a safe environment. 11

•Make sure you always listen to me as sometimes I get frustrated and I can lose my temper 12

Useful Contacts and Links:

TRFT Learning Disability and Autism Team

Email: rgh-tr.learningdisabilityandautismteam@nhs.net

Phone: 01709 42 8371 (answerphone service available)

Available Monday to Friday 8am – 4pm.

Outside of these hours please consult the patient, their Hospital Passport and family / carers.

Rotherham Adult Neurodiversity Support Service (RANSS)

Support service for neurodiverse adults (18+) with a Rotherham GP. Offer person centred post-diagnostic support from Peer Support Workers with lived experience of autism or ADHD alongside group workshops. Meet ups and activities for all neurodiverse adults – autistic and/or ADHD (diagnosed, awaiting assessment, or self-identifying).

Email: admin@rpcf.co.uk

Phone: 01709 296292

Website: www.ranss.co.uk

The National Autistic Society

Website: www.autism.org.uk

Please visit the website to get the correct phone number for whatever you require.

SpeakUp

Speakup is run by and for people with learning disabilities and /or autism, offering advocacy, information, training, social opportunities.

Phone: 01709 720462

Email: team@speakup.org.uk

Galax Business Centre, Fitzwilliam Rd, Eastwood Trading Estate, Rotherham S65 1SL

Rotherham Parent and Carers Forum

Rotherham Parent Carers Forum supports parents of children with disabilities. They provide peer support and advice on navigating the world of Special Educational Needs.

Email: admin@rpcf.co.uk

Phone: 01709 296262

Patient Information

Easy Health

Website: www.easyhealth.org.uk

Over 390 easy read health resources that include pictures and simple text, Easy Health’s information is accessible to anyone who finds written information hard to understand, including people with learning disabilities.

Plain English Campaign

Website: www.plainenglish.co.uk

Resources on the Hub

• TRFT Learning Disability Policy

• Best Interest Form

• Hospital assessment for people with learning disabilities. (Traffic Light Assessment)

• DisDat Tool – Disability Distress Assessment Tool

• The Rotherham NHS Foundation Trust Strategy for People with a Learning Disability/and or Autism

• Accessible Writing for People with Learning Disabilities

• Autism (NICE Guideline)

• Equal Access for People with Learning Disabilities

• Getting it Right for People with Learning Disabilities

• Joint Safeguarding Children and Adult Services Governance Structure

• Meeting the health needs of people with learning disabilities: RCN Guidance for Nursing Staff

16. Hidden Disabilities Scheme

The sunflower is a globally recognised symbol for non-visible disabilities, also known as ‘Hidden Disabilities Sunflower’ or ‘invisible disabilities’.

Not all disabilities are visible – some are not immediately obvious. They include autism, chronic pain, and learning difficulties as well as mental health conditions, mobility, speech impairments, and sensory loss such as speech, sight loss, hearing loss, or deafness. They also include respiratory conditions as well as chronic conditions such as diabetes, chronic pain, and sleep disorders when these significantly impact day-to-day life. Although you may not be able to see these invisible impairments and conditions, they’re still there.

People living with these often face barriers in their daily lives including a lack of understanding and negative attitudes. So some choose to wear the Sunflower to discreetly identify that they may need support, help, or just a little more time.

Offer a sunflower lanyard/badge to your patients with hidden disabilities if available, appropriate and safe.

17. Accessibility Guides

The Trust have worked with AccessAble to produce access and navigation guides for the hospital. These can be accessed from the Trust or AccessAble websites www.therotherhamft.nhs.uk www.accessable.co.uk/the-rotherham-nhs-foundation-trust or by downloading the AccessAble app

These guides contain information about accessibility and facilities, such as toilet facilities and parking. They clearly show areas of the Trust, which can help people who are unfamiliar with the hospital to navigate around, and can help to reduce any anxiety caused by an unfamiliar environment.

The AccessAble guides also include instructions for common routes people may take around the hospital, complete with photographs of each area, detailed directions to where you need to be and accessibility information.

This information comes in an easy read format too, to assist anyone who may struggle to read a lot of information.

These could be helpful to show patients the way around, to help patients visualise their visit to the hospital or to find the nearest accessible facilities.

18. Picture Cards

Picture cards are a method of assisting communication between staff and patients. Always check the Hospital Passport to see if a patient likes to use picture cards.

Some people with a learning disability may prefer to communicate using only picture cards. Some people may use a combination of verbal speech and picture cards.

To indicate a picture, the patient may point to it, some people may move their head to help the staff member move their finger to the topic the patient would like to raise, some people may use another gesture e.g. making a sound when the staff member points to the correct picture. Picture cards included in these resources:

• Impairments and Conditions

Physical / Visual / Hearing

• Communication

Language translation

British Sign Language

Electronic aid

Makaton

Lip reading

• Things I may need

Hearing aid / False teeth

Glasses

• Dietary needs

Kosher / Gluten free / Vegetarian

Halal / Dairy free / Vegan

• The body - site of pain

• Tests and observations

Pulse / Oxygen level / Temperature

Hearing test / Urine test / Blood pressure

Eye test / Ultra sound probe

• Test and treatment

Finger blood test (capilliary)

Naso-gastric / Canula

PEG Feeding / Blood test

Injection / Stitches / Catheter

Heart monitor / Suppository

Drip / EEG / Enema

CT Scan / Ultrasound / X Ray

Lying down / MRI Scan

Surgery / Sitting down

Standing up

• Personal Hygiene

Hand gel / Bath / Deodorant

Wash / Shower / Brush teeth

• Personal Care

Toiletries / Nail care / Hair care

Shave / Mouth care

Periods

• Going home

Home / Car / Patient transport

Taxi / Discharge lounge

Do you have an impairment?

The body - site of pain