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Autism

Everything you need to know about living well with autism

  • Introduction
  • Types
  • Symptoms
  • Daily Living
  • Support
  • Glossary

Introduction

This guide may be useful to you if you have autism, or care for a child or an adult with autism.

If you are wondering, ‘what is autism?’, this guide may provide some answers for you. Here, we explore what causes autism, what autism symptoms may be experienced, and about living with autism. Remember, you are not alone, and there are many sources of support available to you, your child and your family. If you are concerned about any of the symptoms or information you read here, please consult your GP.

Introduction

What is autism?

Autism or ‘autism spectrum disorder’ (ASD) is a developmental condition that affects how a person interacts with the world around them.

If a person has autism, they are sometimes referred to as being ‘on the autistic spectrum’. This is because there are different levels and types of autism. Autism symptoms are therefore wide ranging, and greatly differ from person to person. Symptoms of autism usually involve difficulties with communication, awkward interactions with other people, repetitive behaviour, and difficulty understanding or processing information.

Autism is quite common, with around 1 in 100 people receiving an autism diagnosis. It is more common in males. Many people who have autism also have a learning disability. A diagnosis of autism is usually made when a child is a toddler or before they get to school age, but some people are not diagnosed until much later in their childhood, or even in adulthood. A child with autism will grow up to be an adult with autism – autism is not a childhood condition, it is lifelong.

To find out more, visit the National Autistic Society’s, What is Autism? section.

What causes autism?

We still do not know what causes autism. Research continues to investigate how and why autism develops in some people and not others. The general view is that lots of different factors work together to increase the likelihood of a child having autism, for example:

Genetic – twin studies have suggested that there is a genetic component to autism, but scientists have been unable to find genetic mutations common to everyone with the condition, and therefore think the genetics must be very complex

Environmental – there is evidence to suggest that some environmental factors whilst a child is in the womb may play a part in autism; for example, the mother having an infection, mineral deficiency or taking certain medications during pregnancy – but none of these are conclusive links

Biological – it is generally accepted now that the brain of a person with autism develops differently to someone without the condition, but research is still continuing in this area.

You may have heard about research from 1998, which incorrectly suggested that a child having the MMR (measles, mumps and rubella) vaccination is a high risk factor for what triggers autism in some people. This research is widely discredited, proven to be wrong, and official advice is that there is no possible link. For more information about this, read the NHS article MMR vaccine ‘does not cause autism’.

Autism is not caused by the way a person is raised, their parents’ behaviours or social circumstances.

Diagnosis of autism

Many parents and carers report that it took a long time for their child to be given an autism diagnosis, even if this was suspected for some time. This is because many different healthcare professionals are often involved in making a diagnosis, which is usually based on a variety of evaluations and reports from people who work in different fields. For example, your child may have to be seen and reviewed by your GP or health visitor in the first instance, who then decides whether or not they need to see a paediatrician, psychologist, psychiatrist, or speech and language therapist. In most areas of the UK, a team of people work together to make a diagnosis.

Receiving a diagnosis of autism can be an emotional time, even if you had suspected your child may have the condition already. Remember, you are not alone. There are many sources of autism support available to you and your child. The National Autistic Society provides many helpful booklets with information about what to do after diagnosis.

Did you know... "Autism is a lifelong, developmental disorder that affects around 1 in 100 people."

Types of Autism

Autism, or autistic spectrum disorder, comes in many forms, and each person with autism will present different behaviour and be affected differently.

Generally, there are considered to be three main autism types. It may take some time for you or your child to be diagnosed with a certain type, but the more that healthcare professionals can understand the behaviour being demonstrated, the more likely they will be able to determine the type of autism a person has. This is important for understanding ways to deal with certain behaviours, or help make plans for supporting the person and their family.

Introduction

These are the three main types of autism:

Autistic Disorder – a person with this type of autism will demonstrate several of the symptoms we discuss below, but all to varying degrees

Asperger Syndrome (AKA Asperger’s) – a person with this condition may have some autistic tendencies, but their behaviours are usually less intense than a person with autistic disorder, and they are less likely to have difficulty communicating

Pervasive Developmental Disorder – people with PDD have a less specifiable type of autism, and may have a mix of characteristic behaviours of autism and Asperger’s, which are usually issues with socialising and communication

Did you know... "A person with autism finds it difficult to understand and interact with the world around them, and may present challenging behaviour as a result of this."

Symptoms of Autism

Here we cover the variety of autism symptoms that may be experienced by a child or adult.

It is important to remember that not everyone will have all of the symptoms we discuss below, and may experience them to different degrees. The behaviours and actions of a person with autism are also changeable throughout their lives, and symptoms they display in early childhood may be reduced as they grow up, or make way for new, different behaviours.

If you are concerned that your child is displaying symptoms of autism, please consult your GP. Some of the early signs of autism listed below are also symptoms of other conditions. All babies and children develop at different rates, and your child may just need extra support in certain areas.

Introduction

People with autism report feeling that there is too much going on around them and that they struggle to respond to all this information e.g. sound, sensation, and social expectation. A person with autism may therefore present types of behaviour that is considered different or ‘strange’ by other people around them. Some examples of behaviours or symptoms of autism are:

• Difficulty with speaking, either preferring not to speak, not developing the ability to speak, speaking only words and not full sentences, and repeating things over and over

• Not understanding or being able to participate in social norms and communication

• Taking things very literally, and being unable to understand jokes or facial expressions

• Finding ‘conversation’ difficult, or preferring to communicate without speech (e.g. with pictures, or writing/typing, sign language, etc)

• Not answering questions or responding to someone calling their name

• Few or no facial expressions and little or no eye contact

• Dislike of physical affection (hugs, kisses) from parents and close family

• Feeling unable to make friends, or being disinterested in making friends

• Issues with personal space

• Repetitive actions and movements, e.g. pressing the same button many times over

• Being really interested in certain things, to a point where other people may see this as ‘obsessive’ or excessive

• Preferring and needing each day to follow a set, and very exact, ritualistic routine, and finding even slight changes to this to be very distressing

• Feeling overloaded by sensory information or being overly interested in certain sensory stimulants (hyper-sensitive), e.g. strongly liking or disliking certain sounds, tastes, smells or lights

• Having little interest in food and eating, eating very few foods or having very specific tastes (e.g. eating only crunchy food or beige food)

• Being unable to sleep or having a disturbed sleep pattern

• Having intense emotions that are difficult to manage, and feelings of anxiety

Not everybody with autism will experience all of these symptoms or behaviours. Autism is a spectrum, so everybody experiences it to different levels and autism causes different behaviours, emotions and challenges for each person.

It is important to see a person with autism as an individual, and to try and understand them as a person, finding ways to meet their specific needs, rather than only seeing their condition. Many behaviours are responses to certain situations, and reflect that the person is finding something hard to deal with. Their autism triggers behaviour that they are unable to control.

As a parent or carer of someone with autism, it is important to focus on what they can do (as opposed to what they cannot or will not do), and possibly find ways to help them develop their abilities and behaviours. Read more about treatments for autism later.

People with autism are also more likely to have other healthcare conditions such as asthma, allergies, epilepsy, digestive problems, learning disabilities, mental health problems, lower immunity and viruses.

For more information about the symptoms of autism, The National Autistic Society provides an overview of symptoms and in-depth information about understanding behaviours.


Did you know... "Autism is usually first noticed and diagnosed during early childhood, between the ages of 18 months to 4 years old. "

Living with Autism

Read on to find out more about what daily life may be like for someone living with autism and also how it might affect their family.

If you have a child who has been given a diagnosis of autism, you may have lots of questions and concerns about the condition and your child’s future. In this section, we provide information about where to go for autism support, and advice on how to help your child, as well as yourself, perhaps your partner and other children, to live well with autism.

If you are an adult reading this and you have autism, whether your autism diagnosis was recent or some time ago, you may find the information we cover here to be useful, which includes details about autism treatment, autism diet, autism and employment, and aids for autism that may help with possible daily challenges.

Introduction

Impact on daily living

Learning that your child has autism can be difficult to take in. It is likely you will experience a range of emotions after diagnosis. There will be practical and emotional challenges for you to deal with and to help your child to deal with. It is important to remember that you are not alone – thousands of families are experiencing similar things to you. There will be difficult times, but there are lots of ways to help manage autistic behaviour so that you, your child and other family members can have many positive experiences and a happy family life. Learning to manage your child’s autism will be ongoing - finding out what works best at home, or in different situations, will be a learning process.

It may help to understand what your child experiences in their daily life, and how they feel. The BBC iWonder page provides an interactive case study example about a boy called Eddie.

It may also help to understand what it is like to live with autism as an adult. The BBC provides an online video ‘Living with autism: Sarah’s story’ and there are many real life stories from autistic adults here.

The YouTube channel ‘Invisible I’ provides regular videos about the life of Katy Gough, a young woman with Asperger’s syndrome.

Treatments for autism

There is no cure for autism and a person will live with the condition throughout their life. There are no ‘quick fix’ autism treatments. However, there are approaches that may help a person to develop their social and communication skills and which may possibly change some of their behaviours. These may include finding the right ways to talk to your child, providing them with sensory stimulation (or reducing their sensory stimulation), providing them with alternative ways to communicate (e.g. signs and visual supports) and counselling. Each person with autism will experience their condition differently though, so it may take time to find the right solutions to suit a particular person’s needs.

The National Autistic Society provide a framework referred to as SPELL. This is not exactly a treatment for autism, but instead it is a recommended way for parents and carers to meet the needs of a person with autism. SPELL stands for, and recommends:

• Structure – many people with autism respond well to routine, process and predictability in their daily life and environment

• Positive approaches and expectations – many people with autism experience low self-esteem and anxiety, and it is sometimes easy for parents, carers, teachers and peers to assume a negative attitude towards what a child (or adult) with autism can do. A positive approach can help the person grow, develop and reach their potential

• Empathy – seeing life, daily tasks, and situations from the point of view of a person with autism can help the people around them understand how they feel and why they behave or react in certain ways

• Low arousal – many people with autism benefit from calm and controlled settings, where they are not bombarded with too much information or sensory overload

• Links – many families find that working closely and communicating openly with their child, other family members and other people or professionals involved in their child’s life, leads to a more effective, holistic approach to their welfare and wellbeing

For more information on SPELL and other possible autism treatment programmes and approaches, visit The National Autistic Society website. The society also provides a parent support programme called EarlyBird to help parents of pre-school children with autism to learn new ways of supporting their child.

Child Autism UK provides services for families, such as programmes and training courses.

You may come across or hear about other expensive interventions that claim to have proven results, which quote scientific data or endorsements from medical professionals or parents. The general advice from official charities and organisations working for autism, is that these treatments for autism are often bogus, with unreliable ‘evidence’. Whilst some people may claim these have been successful for them, this is not necessarily the case for the majority of people. The NHS website provides a list of treatments that are not recommended and we recommend you discuss any potential autism treatments with your child’s healthcare team before embarking on them.

Autism medications

Some children or adults with autism will be prescribed medication to help treat symptoms for conditions related to their autism, for example, anxiety, depression, epilepsy or sleep disorders. A small number of people with autism may present behaviours that are aggressive or may cause harm to themselves or others. In these cases, it may be recommended that the person takes antipsychotic drugs to help calm these symptoms.

Research Autism provides a breakdown of all types of autism interventions, treatments and therapies, which you may find useful.

Family life and autism

Having a child, or children, with autism, is likely to mean you have a different family life to the one you had imagined, or different to the lives of other families you know.

You may need to adapt your home environment to suit your child, and consider any changes to the usual routine very carefully (for example, holidays, house moves, redecorating). The National Autistic Society provides lots of advice about this.

If you would like to talk to other families who have children with autism, you may wish to get in touch with Contact a Family or The National Autistic Society who both offer support groups.

Autism products

There are many products for autism available that help people with the condition to cope with everyday life, develop new skills, interact with others, relax or sleep, and understand the world around them.

NRS Healthcare are experts in providing daily living aids and autism aids, including many resources that people with autism may find helpful. Here are some examples of products that may help with a selection of common autistic behaviours:

• Help for someone who chews non-food items – Chew Toys

• Create a calming environment and avoid overstimulation – Dark Den, Dark Den Lighting Accessory Kit

• Responds to visual sensory stimulation: Visual Effects Sensory Bag, Optical Effects Sensory Bag

• Responds to sense of touch or find tactile items comforting: Tactile Sensory Bag, Body Massage Bag, Undo-Me Mini Cube, Vibrating Cushions

• Responds to sound: Nature Sound Pyramid

• Responds to smell or requires relaxation: Aromatherapy Diffuser, Aromatherapy Starter Set, Aroma Dough

NRS Healthcare also provides a range of assistive technology or "telecare". These electronic devices can help if you are providing care for someone with a variety of needs, and includes equipment for safety and monitoring. Some parents and carers of children with autism may find these useful.

We also provide a range of other products that may help with all areas of daily living. If you need further advice, our team of in-house occupational therapists are on hand to recommend products to suit your needs. Contact them on 0345 121 8111 or email: productadvice@nrshealthcare.co.uk

Diet for autism

People with autism sometimes have difficulty with food and eating. This may begin during their very early years, even during the phase of weaning from milk to solid food when they are a baby. It is very common for people with autism to eat only a few foods, or have very specific tastes and requirements, for example, eating only soft food, crunchy food, etc. These autism eating habits sometimes lead to having problems with digestion, tooth decay, weight loss or weight gain.

Some researchers have suggested that autistic behaviours can be improved through diet, for example, eating a gluten free diet. Some people with autism or parents of autistic children report that dietary changes have led to improvement in some behaviour. However, there are no conclusive results from studies and little evidence to support these.

Some people with severe autism have low levels of key vitamins and minerals such as B vitamins and zinc. There are a host of autism supplements available online, for example, turmeric, but there is no scientific evidence to prove that these work.

Network Autism provides professional information about eating issues in people with autism as does the Association of UK Dietitians.

If you are concerned about the eating habits or diet of someone who has autism, or if you are considering supplements for autism, please speak to your GP or dietician first.

Exercise for autism

Exercise is important for children and adults of all ages. Many people with autism benefit from regular exercise. Some people will be willing and able to partake in sports and fitness, whereas other people may be less likely to do this. Exercise does not have to take this form though and many children and adults with autism enjoy running, jumping, walking and generally keeping their bodies active. Exercise may help with sleep, appetite, thinking, mood and give the opportunity to interact with others. Generally, if a child or adult is able to partake in physical activity in a safe manner, this is likely to be of great benefit to their wellbeing.

Autism and financial support

For information on how to access the benefits and financial support you are entitled to as a person with autism, or their parent or carer, please visit the GOV.UK website or the Money Advice Service.

Autism and employment

Many people with autism would like to work and are capable of working, but for various reasons are unable to find work. This may be due to communication difficulties that stop them applying or interviewing for jobs, lack of understanding from employers about autism and, potentially, a lack of certain required skills.

People with autism often have lots of skills that make them very employable, for example, they may have a good eye for detail, be very good at remembering information, be very good at following processes, be very creative in their thought and ability, and stay very focussed on specific tasks or ideas.

Fit for Work provides information for employees and employers about autism and employment.

Did you know... "Autism causes difficulty with communication and sensitivity to sensory input. "

Support for Autism

Remember – you are not alone!

We hope you have found this guide to autism informative. Autism affects thousands of people and families across the UK. Whilst there are no definitive medical explanations, cures or treatments for the condition, there is help for autism in terms of health and social care services and professionals.

There are also many charities and organisations that provide information, advice and support for autism. Below, we indicate what support is available for autism through helplines, online communities, and informative websites.

Introduction

Resources

Ambitious about Autism – a national charity for children with autism, campaigning for change and providing support and education

Autism Alliance – a network of autism charities that work in regions across the UK

Autism Network Scotland – an information hub that signposts people to professionals and information sources in Scotland

Autism Support UK – a charitable organisation providing training courses for parents of children with autism in the Greater Manchester area

Autistica – a charity for autism research

Asperger’s Syndrome Foundation – a small charity that promotes awareness of Asperger’s syndrome

Beyond Autism – a charity that helps people with autism through training, support and education

Child Autism UK – a charity that supports families coping with autism and provides training, advice and help to find funding

NHS – source of medical and healthcare information about Autism and related disorders

Scope – a national charity supporting people with disabilities

The National Autistic Society – the leading UK charity for people with autism and their families, providing lots of information on all aspects of living with autism, from diagnosis to independent living, as well as support services and an advice helpline

Did you know... "There is no cure for autism, but there are ways to help and support a child or adult with the condition, to develop their skills and live well. "

Glossary

Unsure what something means? Checkout our Glossary section below.

Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology. Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of autism as straightforward as possible.


Introduction

Antipsychotic drugs

- these are available on prescription, and are licensed to treat people with mental health problems whose symptoms include psychotic experiences

Developmental condition

- related to the development of abilities and skills that most people have e.g. language, social, motor skills

Digestive problems

- problems within the stomach that may include bloating, cramps, heartburn, indigestion, constipation or diarrhoea

Genetic

- the material that every living thing has, containing DNA, which is inherited from parents

Immunity

- a biological state in the body that means the body can fight off infection or disease

Learning disability

- a reduced ability for thinking, solving, communicating, or learning tasks and skills

Mental health problems

- otherwise known as ‘mental illness’, and refers to problems related to the mind, thought process, behaviour and reactions; may include problems such as anxiety, depression, schizophrenia or bipolar disorder

Sensory stimulation

- the arousal or invoking of the senses (hearing, smell, taste, sight, touch) with external stimuli


Last updated on 19/09/2018

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