Autism

A guide to help businesses and public services provide better customer care to people with autism

“Understanding Me”

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ContentsIntroduction 4

SectionOne: 7For anyone who may come into contact with me. (This includes people working in shops, leisure facilities, libraries, cafes, buses, taxis etc.)

WhatisAutism? 7

AreaswhereImayhavedifficulty: 10• Communication• Social Interaction• Imaginative Understanding• Sensory Issues

KeepingSafe 25

SectionTwo: 29For anyone who might have longer or more regular/frequent contact with me, or be offering me an appointment. (This includes health professionals, council staff, the police and people working in shops, businesses, services and facilities I use a lot.) Please read section one first.

CommonProblemsFaced byPeoplewithAutism 30

SupportthatmayHelpMe 32

ChoicesandDecisions 47

FurtherInformation 50

The photos and images in this guide may not be used in any other format without permission.

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We know that lots of people working in businesses, services and facilities want to offer a good service to customers with Autism, but are unsure how to do this. This guide will help!

You may run or work in a library, shop, swimming pool, café, theatre, bank, bus company, a dentist, GP surgery or hospital, a police station or council office or all sorts of other services and facilities. If you do, this guide is for you.

IntroductionBeing able to live my life the way I want and as independently as possible, is important to me. I value being part of the community in which I live and being able to use the same services and facilities as everyone else.

People like me, with Autism, sometimes find that services are difficult to use. We don’t always get the help we need to be able to use services and facilities and to get the things we need from them.

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The Equalities Act 2010 gives people like me the right to have access to services and puts a duty on services to make reasonable adjustments for us. This guide will help you to do that. Some of the suggestions in this guide may be helpful to other customers too.

The first section of the guide will be useful for anyone who may briefly come into contact with me. The second section contains more detailed information and will be useful for people who might have longer or more frequent/regular contact with me or be offering me an appointment.

Each person is affected differently by their Autism so not all of the information in this guide may apply to me.

Section OneWhat is Autism?I have an Autistic Spectrum Condition, otherwise known as Autism.

This guide will use the term ‘Autism’ to describe people with the condition and this will include people who have Asperger Syndrome (one kind of Autistic Spectrum Condition).

Autism is a lifelong, developmental disability that affects how the brain processes information.

Having Autism means that I may need some extra support with day-to-day activities, communication, social situations and keeping safe, but with this support I can lead a full and active life.

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People with Autism often behave in ways that other people find odd. I may have unusual mannerisms and behaviours. These behaviours may be caused by a range of things. They may be my way of dealing or coping with a situation I find difficult, particularly if I am anxious, scared, upset or frustrated.

Bear in mind I may find situations that you find ok very difficult. It will help me if you can be understanding and tolerant.

Like every customer, whilst I have the right to use your service, I also have a responsibility do so respectfully. If you have any concerns about my behaviour, think about how you can communicate this to me, or my supporter, and help me to understand what I need to do differently.

Autism probably affects about 1 in 100 people. This means that it is likely that a number of your existing customers have Autism.

Autism is sometimes called an ‘invisible disability’. You can’t necessarily tell if someone has Autism by looking at them.

I may have an ‘Autism Alert’ card (or something similar) that I may show you that identifies me as having autism.

I may use your service by myself or with support from a family member, friend or paid worker.

If you haven’t met me before or don’t know me or whether I have Autism, offer me the same good customer care you would offer anyone else. If I seem unsure, particularly if I seem uncomfortable interacting with you, I may have autism. If it appears I may need some help, it is ok to ask me what help I may need.

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CommunicationHaving Autism means I may experience problems in using and understanding communication – both verbal (speech) and non-verbal (body language, facial expression, tone of voice etc.).

This can make it hard for me to communicate my feelings and needs or to ‘read’ other people (i.e. know what they are feeling, what they really mean and what their reaction to me means).

Lots of people with Autism speak clearly and it may not be obvious that I have difficulties with communication. Although I may be speaking well, that doesn’t necessarily mean that I can understand what you say.

Like everyone, I am an individual with my own strengths, abilities, personality, needs and aspirations.

People with Autism are affected, to different degrees, in four broad areas:Communication: having problems with understanding and using speech and body language.

Social Interaction: having difficulties in social relationships and interacting with other people.

Imaginative Understanding: having trouble with thinking and behaving flexibly.

The Senses: experiencing sound, smell, taste, touch and sight in very different ways to other people.

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Using communication I may use communication differently from most people. For example, I may:• only use speech to ask for things I want • not appreciate the social role of

communication, e.g. value of chatting• speak very formally, or in repetitive/

inflexible ways• repeat back (echo) what others say or

have said • talk incessantly regardless of other

people’s responses • show little desire to communicate• talk about myself in the 3rd person – for

example, saying ‘Tom likes coffee’ rather than ‘I like coffee’.

Understanding your communicationI may have a very literal understanding of what you or someone else says, and believe words mean exactly what they say.

I may find it difficult to understand:• the meaning of some words/phrases• what someone’s tone of voice means• jokes and sarcasm or language

exaggerated for effect• everyday expressions, e.g. ‘I could eat a

horse’ – I may think you are really going to eat a horse

• other people’s gestures, body language or facial expressions.

Most people use gestures, tone of voice and facial expressions to communicate (as well as words). I may not understand these. Instead try to use clear, straightforward, verbal communication.

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• A lot of talking may be stressful for me, so use minimal, simple, clear language that is specific to the situation. Don’t talk too much! I probably don’t understand as much verbal communication as you think I do.

• Avoid metaphors, abstract language and every day expressions that I may find confusing, e.g. ‘raining cats and dogs’.

• Try to show me, or demonstrate where possible, rather than describing what I should do verbally.

• Use an ordinary intonation – don’t use a ‘sing-song’ voice as this sounds patronising and don’t talk to me as though I were a child.

Communicating with meIt is probably better not to engage me in too much conversation (unless I initiate it), as this may be stressful or distracting for me.

If you recognise that I am having difficulty with communication and you need to communicate with me you could try the following:• Get my attention before you start• Always speak to me first, not the person

who may be supporting me. If I have difficulties answering questions, then you can ask them

• Give me plenty of time to understand what’s been said and then respond (often a long time).

• I am less likely to understand non-verbal communication so your speech must be very clear.

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Social Interaction People with Autism may want, or be able to manage, very different levels of contact with other people.

I may find social situations difficult. I may struggle with interacting with other people or I may find it more difficult than you might expect.

I may seem abrupt and unsociable at times, but I am not being deliberately rude, this is part of my Autism. Please don’t respond in a cross or offended way, but try to be understanding.

Although we don’t necessarily have a social relationship, my social skills or social behaviour towards you may seem unusual so I might: • give little or no attention to the responses

or reactions of you or other people

• If you ask me a question that offers a choice of answers, be aware that I might just choose the last one. You can check this by asking the question again later in a different way. My Autism means that I may find it difficult to handle more than two choices.

• Check my understanding of what you have said. I may be able to tell what I have understood.

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Imaginative Understanding My Autism may make it difficult for me to understand social rules or to think in a flexible way.

I also prefer ‘sameness’ so if there are things in your setting that have changed since the last time I was there or if things are not how I expect them to be, I may find this difficult. It might be a good idea to point out any changes to me so I am less unsettled by them.

• find it difficult to have or maintain eye contact with you, particularly if I am anxious or feeling under pressure

• only be interested in the task/role you or someone performs, not the person as a whole

• be aloof, over-formal or stilted• try to be sociable, but do it in ‘odd’,

unusual, eccentric ways• find it difficult to be tactful – tell the literal

truth all the time• lack empathy and not understand that

other people may have a different point of view to me

• expect that other people have experienced what I have, e.g. expecting someone else to know what has happened to me without being told

• not be able to interpret what other people might be thinking or to predict what they might do from their behaviour.

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If I am having difficulty ‘waiting my turn’ in your service, it may be easier to serve/deal with me quickly, to enable me to leave your service, rather than staying and getting distressed. You may then need to apologise to other customers on my behalf afterwards.

If you know me well, you may know that you can ask me to wait and be reassuring. If I have people with me supporting me, they should know how best to respond to me.

I may also:• have inflexible routines • become anxious, agitated, distressed

and/or angry if things are not as I expect• have quite obsessional interests• behave in unusual or repetitive ways • not be good at being able to read or get

the general picture or gist of a situation• have difficulty in predicting the

consequences of my actions• have difficulty understanding social rules

and behaviour; I may have difficulty with things like waiting, co-operating, queuing, sharing and taking turns.

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The noise or smell might not be something you consider to be particularly significant (you may not even have noticed it) but it may be very significant to me.

I may also have difficulty with bright or fluorescent lighting, a noisy or busy environment, background smells or high-pitched beeps/sounds.

I probably experience touch quite differently to you.

I may be very sensitive to touch (whether this is from another person or through being touched with an object).

Generally speaking you shouldn’t touch me at all unless you have to (for example if you are a health care professional or a hairdresser) and only then if you are sure it’s in a way that I’m comfortable with.

Sensory IssuesMy Autism means that I may respond to noises, smells, tastes, touch or sight in a different way from other people.

I may be more sensitive or less sensitive than most people. Something that has no effect on you may be a very unpleasant or very satisfying sensory experience for me.

I may have quite extreme or unusual reactions to sudden or unexpected sounds, e.g. mobile phone text alerts or a fire alarm or smells, e.g. food or chemicals. These things might distract me, making it harder for me to focus on what you are saying for a while, or may actually be distressing for me.

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Keeping safeI have the right to live my life free from abuse (this includes bullying). Many people with Autism experience harassment and bullying when out and about.

Please don’t ignore bullying. If you see me being bullied, please intervene if it is safe to do so. Tell the bully to stop, and check that I am ok. Try to ensure I will be safe as I leave your service, e.g. that the bully is not waiting for me outside.

For more serious bullying, if possible, ask me if there is anything I want you to do, e.g. help me call the police, call the police on my behalf, call someone else, get me a drink of water or cup of tea etc.

Ask me or my supporters about this so that if you need to touch me it’s in a way that I can cope with.

I may avoid things I am oversensitive to, and/or seek stimulation from things I am less sensitive to (to get a reaction). I may:• be unable to filter out background noise• find it difficult to have eye contact • jump, rock or flap my hands and arms • have an unusual way of walking or odd

posture; be ‘clumsy’.

If I do any of these things try not to comment or to worry. Try to be understanding and tolerant.

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In general please follow this guidance;

Donot:• press me for details• assume someone else will

report it• contact the alleged abuser• promise to keep what I have

told you a secret.

Do: • make a note of what you

have seen or I have told you• help me to preserve any

physical evidence – or do so yourself

• report it – and tell me you have done so.

Please make it clear to me that what is happening is not ok and is not my fault.

If it does not feel safe for you to intervene, call the police.

If I tell you something or you see something that you think may mean I am being harmed, seriously neglecting myself or I am at risk of this, you have a responsibility to report your concerns.

If you think I am in any immediate danger, e.g. I am at risk of being assaulted or I have been hurt, then contact the emergency services (999) and support me the best you can until they arrive.

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Section 2This section contains additional information for people who might have longer or more frequent/regular contact with me or be offering me an appointment with them.

It provides more detail about how to provide me with an effective service. This section should be read in conjunction with section one.

Remember, I have always had Autism and always will.

Don’t support it; report it! Police – emergency 999Non-emergency 0845 6070 999Email contact.centre@sussexpolice.pnn.police.uk

If you witness abuse or think someone may be abusing me you need to alert Social Services and report your concerns. Do this by calling:EastSussex:0345 60 80 191 (Out of hours: after 5pm, at weekends, on bank holidays, call: 07699 391462)

To report hate crime/incidents (like bullying), in addition to contacting the police, you can complete a hate incident reporting form (type ‘hate crimes’ into www.eastsussex.gov.uk – includes easy read version) or contact Sussex Victim Support on 0845 3899 528. You can do this even if the person does not want to contact the police, and you can do this anonymously.

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Remember that behaviour you find odd or challenging may be my way of dealing or coping with a difficult situation. If you don’t understand this, you may try to stop the behaviour or mannerism, which means you will be stopping a coping strategy. This usually makes things worse. If there are people who support me, they will probably know what may prompt such behaviour and things to do that will reduce the likelihood of this happening. Please talk to me and/or them to find out the things you can do to help me to have stress free time when using your service.

Some people with Autism don’t understand the condition itself but do have a sense that they are ‘different’. I may want to change but find it very difficult to do so.

Common Problems Faced by People with AutismPeople with Autism are living in a world that isn’t Autism friendly. Getting help and support from people who understand the condition can be difficult.

Autism is not a mental illness but having Autism makes me more vulnerable to mental health issues – especially depression, obsessive-compulsive disorder and anxiety.

I may experience high levels of anxiety, fear, confusion, frustration or phobias. If you can, try to recognise when I am becoming anxious and do all you can to help reduce my anxiety by following the suggestions on the next few pages.

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Helping me to use your serviceThere are some practical things that you can do to help make it easier for me to use your service.

If there’s been a change in your setting, e.g. how things look or are done, this may be difficult for me and make me feel anxious. Try to anticipate this and point out the change; this may help me to adapt to it better.

Having to wait may make me particularly anxious, or I may not be able to cope with it. Try to avoid me having to do this. For example, this might mean offering me the first appointment of the session. Talk to me or my family/support worker about what time of the day would be best for me.

Support that may help me

Try to understand the challenges I face and the stress these may cause me.

Don’t rush me or put me under added pressure. Anxiety may make me angry at times – please don’t take this personally.

You need to accept my differences and eccentricities. Don’t expect me to behave in ways that are alien to me.

Try to adapt your approach to meet my needs.

OverallIpreferorneed:• structure, planning and a routine • consistency, predictability and stability• choices I understand• explanations and demonstrations• effective communication • time to think about and do things.

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To help with communicationSee Section One. Some additional ideas:

Adapt how you communicate with me. Ask me (or if appropriate ask my family or support worker) what is best for me.

Many people with Autism prefer visual communication techniques such as writing or pictures rather than verbal communication.

Easy Read guides may help (for example, Easy Read Health Guides – see page 50).

I may find it particularly difficult to cope when your service is busy and noisy. It may be helpful to arrange a time for me to use the service when it is less busy and noisy.

Try to be prepared if you know you are going to see me. Think about what you want to say and the best way to communicate with me. If possible ask me or my supporters.

I may need more time to explain things and to understand what you are saying, so I may need longer than other people.

I may get very anxious if I don’t know what is happening. Try to make things as predictable as possible. For example, you could give me information to look at beforehand or organise a visit so I can become more familiar with the surroundings in preparation for making an appointment.

Try to check with me that I’m ok and try to find out what works for me.

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To help with written communicationI may find reading written information difficult. There are some things that you can do in the way you write and present information to make it easier for me to understand.

• Write as you would speak.• Use clear and simple text and short

sentences and words.• Avoid jargon and abbreviations – provide

a glossary if you have to use them.• Use photos, drawings or symbols to

support the text.• Use symbols for numbers (9) not words

(nine).• Refer to the person as ‘you’ and the

service as ‘we’, e.g. ‘You need to come to the dentist on’. ‘We will check your teeth’.

Some people with Autism do better with verbal communication than others. Some people with Autism may appear to understand and say they do but may not. Using visual aids is often helpful.

If I seem to cope better with visual information, then use this and if I seem to cope better with verbal communication, then use this.

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To help with verbal communication• Keep verbal communication to the

minimum, unless I initiate more.• Try to explain situations, events and

concepts in language I can understand. • Give me one piece of information at a

time and give me time to process it.• If possible use a calm and quiet

environment.• You may need to repeat things several

times (perhaps on different occasions) if it helps me.

• Don’t be afraid to remain silent if no words are needed.

• Use a minimum font of 12 and the most important information in a minimum font of 14.

• Use a clear type face, e.g. Arial• Avoid block capitals, italics or

underlining. They make text harder to read.

• Use bullet points and fact boxes to make the main points clear.

• Do not write/print text over images.• Use matt paper rather than glossy paper.

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To help with difficulties around Social Interaction and Imaginative UnderstandingI may have difficulty being flexible or changing routines and plans, especially at short notice, so try not to change appointments unless absolutely essential and prepare me for any unavoidable changes.

I might not be able to imagine how to do something or to imagine how a situation might be if I haven’t actually experienced or done it myself. If you need to talk about future events, I may find it difficult to understand. If you can show me (by using something visual) what will be happening in the future, I may find it easier to understand.

• To help reduce any anxiety I may be experiencing and to build my confidence, try to start by asking me about things I am likely to be able to talk about.

• If I can respond to them, ask open questions – ones that need more than a short factual or yes/no answer. You can use closed questions later to clarify understanding.

• If I can use a computer, communicating by email may be helpful as this may reduce the stress that social interaction can cause me. Communicating in this way is also more under my control and can happen at my pace. Check if this is something I want and am able to do.

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I may learn in a rigid, inflexible way (doing things by rote) but not understand why or be able to grasp the bigger picture. Having a structured, repetitive way to help me understand things may help.

I may find things like planning, organising, problem solving and choice making difficult. I may need plenty of time to think about any choices or decisions. I may need help with this from you or other people. I may need visual information to help with this and I’m unlikely to be able to make choices or decisions if I’m put under any pressure.

I may not be able to take my previous learning or experience and apply it to new or slightly different situations. You may need to explain each new situation to me, rather than assuming I’ll understand. I probably have difficulty with adapting and transferring skills and knowledge.

At times I might not be able to do something that I was previously able to do. We all have ‘bad days’ but this may be even more so for me. Don’t assume I know what to do; you may need to go over some things again.

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I may find some environments particularly stressful; noise may be very distracting, e.g. tannoy, television or radio, so it may help to find a quiet place for us to meet. I may be distracted by clutter which may make it difficult for me to concentrate and focus on you. It will help if you are aware of anything that I might find difficult in the environment. Ask me, or my supporter, what will help me.

If you are providing a service/treatment that involves• physical contact, e.g. medical

practitioner, dentist, hairdresser• using lights, e.g. optician• substances that might smell, e.g.

chiropodistyou will need to check with me and/or my supporters whether this will be difficult for me, and plan how to go about doing things. It may help me if you show me what you are going to do before you actually do it.

Because of my different sensory experiences I may:• feel tired and stressed because I am

over-stimulated• need ‘recovery’ or rest times, or to follow

a routine or ritual regularly in order to cope with sensory stimulation

• need to do things that provide me with firm physical pressure or touch that I am in control of so I might need to wear very tight or heavy clothing or jewellery

• have erratic eating, drinking and sleeping patterns and/or need to drink a lot.

Autism means that I may respond to noises, smells, tastes, touch or sight in a different way from other people.

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Choices and Decisions I have the right to make choices and decisions and to have control over my life and what happens to me. This right is backed by a law – the Mental Capacity Act 2005.

If I am able to make decisions for myself, respect my right to do so, even if you don’t agree with the decision I then make, or think the decision is unwise.

Please don’t assume that just because I have Autism I don’t have the ability to make decisions, but remember that I will probably need extra time and information to do so. This might include:• giving me extra time to think about the

decision

You may need to break down any treatment or service into smaller parts that I am better able to cope with.

I may find it helpful to have a ‘dry-run’ beforehand or to experience some aspects like visiting the setting, sitting in a chair, looking at the equipment to be used.

Planning with me and my supporters how best to do things will be key to things going well.

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Different people will need to assess my capacity to make different decisions. For example, for medical decisions, e.g. whether or not to have a particular treatment, procedure or medication, a medical practitioner must assess my capacity to make that decision. My family and/or support staff cannot do this, although they may have useful information to help the medical practitioner with their assessment.

If I am not able to make a decision, then you might need to make the decision or act on my behalf. Anything you do must be in my best interests and be the option that is least restrictive of my human rights. The Mental Capacity Act has a ‘Code of Practice’ that you are legally required to follow if you are making a decision on my behalf. Again, different people will need to assess what is in my best interests for different decisions, and, for example, this must be a medical practitioner for medical decisions.

• presenting the information I need in a clear and simple way, probably visually

• explaining the options available to me and the consequences of different decisions several times, again probably visually

• checking my understanding by asking me to communicate to you what I have understood.

There is a risk that you may assume that I have capacity to make a decision because I appear to understand when I don’t. Remember that decision and choice making can be a real problem for people with Autism, regardless of my level of intelligence, so I will need, and am entitled to, extra support to make decisions.

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Further informationSome useful websites: • National Autistic Society (see also their ‘think

differently’ website)www.nas.org.uk

• British Institute of Learning Disabilities (BILD)www.bild.org.uk

• Mental Capacity Act 2005: Code of Practicewww.publicguardian.gov.uk/mca/code-of-practice.htm

• ‘Better services for people with an autistic spectrum disorder: A note clarifying Government policy and describing good practice’ Dept of Health Nov 2006 (Easy read version is good)www.dh.gov.uk/en/publicationsandstatisticspublications/publicationsPolicyAndGuidanceDH_065242

• Guidance on producing easy read informationhttp://www.mencap.org.uk/document.asp?id=1579

• Easy Read health issues informationwww.easyhealth.org.uk/

• Autism Act 2009 & Adult Autism strategy (Fulfilling and rewarding lives) & statutory guidancewww.dh.gov.uk/en/PublicationsandstatisticsPublications/PublicationsPolicyAndGuidanceDH_113369

Photos and images:Most photos are from Southdown. Photos where indicated from www.careimages.com (tel 02072541500) and www.photofusion.org (tel 02077385774). Photosymbols courtesy of Photosymbols Limited (tel 0117 959 4424; http://www.photosymbols.com/). Drawings courtesy of Change (tel 01133 880011; www.changepeople.co.uk)

This ‘Understanding Me’ guide was developed in 2011 by Southdown

Housing Association on behalf of East Sussex County Council Learning Disability

Partnership Board, with funding from the Learning Disability Development Fund.

Feedback and advice was given by parents of people with Asperger syndrome and members of the East Sussex Learning Disability Workforce Development Group.This guide is also available on the East Sussex County Council website: http://www.eastsussex.gov.uk/socialcare/developments/A series of ‘Supporting Me’ guides for Personal Assistants are also available from the above website, from the local Independent Living Advice Service A4e tel 01323 414674 email ilss@a4e.co.uk and from Skills for Care Southeast Website www.southeastskillsforcare.org.uk

Southdown Housing Association2 Bell Lane, Lewes, East

Sussex, BN7 1JU 01273 405800

www.southdownhousing.orgSouthdown Housing Association is an exempt charity Registered with the Tenant Services Authority/TSA, the Regulator of Social

Housing (L1829) and The Industrial and Provident Society (20755R)