Caring for someone with autism
Providing care for someone with autism can be very demanding and it is important to ensure that you make time to look after your own health and emotional needs.
Coping with behaviour issues in the home can be very challenging. Carers may have to deal with anything from toileting issues to self-harm so it is helpful to understand what help is available in your local area. This can be from home care and support through to local clubs and community group. You can use the Carers Directory to look for support services in your area.
Speaking to people who are facing similar challenges to you can help you make sense of things. Having a network of people who you can turn to for advice and support can be very helpful.
Autism Information Service
Derbyshire County Council have commissioned a new free Autism information and advice service. The countywide service is provided by Citizen's Advice Mid Mercia and it aims to provide timely and accessible information about the support and services available to any person in Derbyshire living with Autism, as well as their friends, families and carers.
Derbyshire County Council have an officially recognised autism passport to support individuals living with autism when entering hospital or seeking healthcare treatment in Derbyshire.
People living with autism in Derbyshire can download the passport, complete it, and take it with them when they go into hospital or attend healthcare appointments. The passport will then be kept with their hospital notes so that it can be consulted by hospital staff before any medical interventions are performed. The passport will help to ensure that the sensory, physical, and communication needs of patients living with autism are met.
There is also guidance available to help you to complete the passport with the most relevant and important information.
Living Well with Autism
If you need to talk to a professional the Relate Counselling Service provide a Living Well with Autism service and have staff who are specially trained to understand autism and how to support families and carers.
They provide a telephone helpline on tel: 0808 1789363 (calls are free from a landline or mobile)
They also provide a 1 day course about living with Autistic Spectrum Conditions and how the person with the condition and their family, friends and carers can live a good life.
Local support groups for people with autism and their families
There are a variety of support groups for families and carers of people with autism:
Autism Alliance bring together a number of local autism groups including Autism East Midlands. Their website contains resources and latest autism news and research.
The challenges of caring for someone with autism
The National Autistic Society describe autism as 'a lifelong development disorder which affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them’.
Everyone on the autistic spectrum is different and unique, but all share three core social difficulties; these are often referred to as the ‘triad of difficulties’:
- difficulties with social interaction
- difficulties with social communication
- difficulties with social imagination
As a result of these difficulties, people on the autistic spectrum may struggle with the rules of social engagement; for example, they may find it hard to begin or carry on a conversation, they may not understand how far to stand from somebody else or they may find it difficult to make friends.
They may also display restricted, repetitive patterns of behaviour, interests, or activities. For example, they may develop an overwhelming interest in something, they may follow inflexible routines or rituals, they may make repetitive body movements or they may be hypersensitive to certain smells, tastes or sounds.
One of the most difficult aspects of being a carer for someone living with autism is understanding what life is really like for them and knowing how best to support them.
Autism is often explained as an ‘imbalanced set of senses’. Some senses are turned up too high and some are turned down too low, which results in the person receiving a distorted view of the environment around and within them.
Some of the everyday life things which can be difficult for people on the autistic spectrum include:
- Sound – For some people loud noises may be painful and overwhelming, for others they may seek out loud noise. Some people may find certain noises are intensely distracting, (for example the buzzing noise from a light bulb) and others may find it difficult to perceive subtle differences in sound or language.
- Touch – For some people physical sensations may be exaggerated and overwhelming, (for example the sensation of clothing against the body) and for others they may seek out the feeling on pressure on their skin to help them feel grounded (weighted blankets or certain textures).
- Smell - People with autism may be hyper- or hyposensitive to particular smells. Some odours may be overpowering and unpleasant to them, whilst others may be odours that they like and actively seek out.
- Taste - People with autism can often have restricted diets preferring to eat the same types of foods. A healthy well balanced diet is an important aspect of maintaining both health and wellbeing as such it is important to understand whether it is the taste, smell, sight, or sensation of certain foods which are off putting so as to support the person introducing new and varied food into their diet.
- Pain - Some people with autism do not have typical pain thresholds and pain can be a difficult sensation for many to identify or to describe. This can have potentially serious consequences if their pain is due to an acute condition, such as an infection, which may become life threatening if left untreated through lack of awareness. It is often helpful to use a scale rating system to compare current pain sensations with normal levels.
- Communication – Difficulty communicating is common for people living with autism which can make life lonely and isolating.
- Socialisation – People living with autism often find the rules of social behaviour difficult to understand which can lead to levels of anxiety.
Understanding these differences can enable the carer to make the environment more comfortable for the person living with autism.
Carers need to display a high level of empathy, trying to force the person with autism to behave differently won’t work they need to try to recognise what the person is trying to convey through the actions and behaviours they are displaying.
Resources and information
The Department of Health and the Estia Centre have developed ten top tips for communicating with someone with autism
Derbyshire County Council have developed tips for creating an autism friendly environment as well as a series of leaflets:
- Understanding Autism
- Understanding Autism - Ageing
- Understanding Autsim - Employment
- Understanging Autism - Training
- Parents of children on the Autism Spectrum - Overview (socialcaretalk.org)
More helpful websites and PDFs
- NHS website - caring for someone with autism
- National Autism Society
- Asperger's Syndrome Foundation
- ASD Friendly
- Care and Treatment Reviews - a family survival guide
- A Helpful Online Safety Guide for People With Autism Spectrum Disorders