Autism is a lifelong condition but the quality of life for each person can be greatly improved with the right care and support. The earlier that appropriate support can be given, the better the lifelong outcomes for each person and consequently, their families. autistic people can develop their skills, explore interests, improve physical health and improve social interaction and, in many cases, can find employment. All autistic people can, and do, learn and develop with the right sort of support.
National figures indicate that autism affects at least 1 person in every 100. The 2011 Census figures for Bedfordshire indicated that there were 615,100 people in the county. Based on these figures, it means that there are likely to be well over 6,000 autistic people in Bedfordshire alone.
It is more commonly diagnosed in males than females, although recent research has indicated that females are under-diagnosed as they tend to mask their difficulties.
The exact cause of autism is unknown although ongoing research strongly suggests a genetic cause and the condition tends to run in families. It’s probable that several factors contribute, but essentially it is a neurological developmental condition – or, put simply, the brains of people with autism are differently wired.
It is described as a hidden disability because most autistic people are no different in appearance than anyone else yet can be severely impacted by their autism. Autism is a ‘spectrum’ condition – affecting different people in different ways and to different, often fluctuating, extents.
Autism chiefly affects social communication and interaction, social imagination and sensory processing. Some autistic individuals may never develop any speech whilst others may speak fluently, using full sentences.
Individuals may experience difficulties in any of the following areas of social communication:
In terms of social interaction, an autistic person may appear withdrawn, aloof or uninterested in the people they meet and have difficulties around social relationships. Their ability to develop friendships is generally very limited. People diagnosed with Asperger’s syndrome may also have these difficulties, but are often more aware that they have challenges. They may want to make friends and be a part of society but feel awkward or clumsy in social situations.
Some of the things you might notice are:
These behaviours are often taken as a sign of rudeness, even though there is no intention to be rude, which further affects their ability to socialise effectively, should they want to.
Autism also means that the person will experience varying degrees of difficulty with social imagination. Social imagination allows us to understand and predict other people’s behaviour, make sense of abstract ideas, and to imagine situations outside our immediate daily routine or experience. Difficulties with social imagination mean that autistic people find it hard to:
Autistic people usually have a degree of sensory processing difference which means they can be extremely sensitive to sounds, tastes, smells, light or touch. They can be hypersensitive (over-sensitive) or hyposensitive (under-sensitive) or both. This can cause them distress or even physical pain; e.g. wearing a woollen jumper, or the flickering of a fluorescent light may physically cause extreme pain or, indeed, extreme fascination and pleasure. Visually, they might see detail but not the whole picture, or everything in a scene may appear the same size or distance. Aurally, they might hear all the sounds in the environment at the same volume. Even ordinary noises might hurt their ears.
On top of all this, many have problems with balance and the awareness of their body in space. They may:
While some autistic people and their families cope well with the additional challenges that autism brings, for many others the impact can be described as devastating. Autistic people face many issues, from the persistent challenge of trying to ‘fit in’, to frustration at not being able to express how they feel, to daily crippling anxiety because they cannot make sense of what is happening around them.
Some people develop stress-reducing behaviours that can make them appear strange or unruly and they are judged by others for behaving ‘oddly’. Parents may avoid taking their children out to public places rather than face the reactions from people who do not understand the situation. This causes not only the autistic child but also their family to become housebound and isolated, which has a profound effect on the social and emotional wellbeing of them all.
Many autistic children may miss out on valuable social, educational, leisure and life experiences that others their age take for granted. Their confidence and self-esteem may deteriorate as a result and a reported 70% of autistic people go on to develop depression and other mental health problems. Teenagers are especially vulnerable, often being bullied by so-called ‘friends’ or excluded from mainstream school. Transition into adulthood is challenging, as many may not have the social and communication skills needed to live independently or get a job. Some stay at home through most of their adult lives. Many find that they are misunderstood and some tragically break the law and commit crimes, often related to their lack of social understanding.
Siblings of autistic people may also be affected by being in a stressful environment, unable to socialise because of the difficulties at home, or unable to go out as a family. Some become carers for their autistic brother or sister in an effort to help their parents; in some cases the strain of this is well documented to have long term psychological effects.
Some parents report feeling isolated, depressed, and emotionally and physically exhausted from looking after their autistic children and fighting for support. They feel judged by society, guilty that their child is missing out and frustrated at not knowing how best to help them. For many families, at least one parent cannot work due to their caring responsibilities and this puts an additional financial burden on them. Often, autistic people have disturbed sleep patterns and they need constant supervision which is physically exhausting. As they grow up, the children become too strong to handle if they throw a tantrum. Many parents with autistic children assume that they will be the primary carer for life and are often very worried about what will happen to their child when they are too old to care for them or when they die. Frequently, without the right understanding and support, the stresses of living with someone with autism cause families to break up, which adds to the feeling of isolation and despair of the parent left to care for the individual.
Autistic people usually have difficulties with organisation which makes doing the tasks we encounter on a daily basis extremely difficult. They often prefer to be given just one instruction at a time and even then, may not know when the task is finished. They may find it hard to remember what they might need for an activity or an outing. They will usually have trouble paying attention to two things at once and doing things in the right order. They might be able to do something in one place but not another. They might not acknowledge a person if they are not in their usual place. All of these things can have a great impact on their performance in school and adult life.
Many autistic people have intense special interests, often from a fairly young age. These can change over time or be life-long, and may be anything from art or music, to trains or computers. Some autistic people may eventually be able to work or study in related areas. For others, it will remain a hobby.
Some autistic people may also have learning disabilities which can affect all aspects of their life, from studying in school to learning how to wash themselves or make a meal. As with autism, people can have different ‘degrees’ of learning disability, so some will be able to live fairly independently – although they may need some support to achieve this – while others may require lifelong, specialist support.