Loneliness, lack of friends, few social activities, and little support are among the most common problems that people with autism and their families face.
While some people with autism and their families cope well with the additional challenges that autism brings, for many others the impact can be devastating. People on the autistic spectrum 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. They commonly develop stress-reducing behaviours that can make them appear strange or unruly and they are judged by others for behaving ‘oddly’. Parents 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 child with autism but also their family to become housebound and isolated, which has a profound effect on their social and emotional wellbeing.
The children miss out on valuable social, educational, leisure and life experiences that others their age take for granted. Their confidence and self-esteem deteriorate as a result and many 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 just as bleak as the majority do not have the social and communication skills needed to live independently or get a job. Often they stay at home or walk the streets 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 suffer from being in a stressful environment, unable to socialise because of the difficulties at home, and unable to go out as a family. Some become carers for their autistic brother or sister in an effort to help their parents, and the strain and neglect is well documented to have long term psychological effects.
Parents can become 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 a massive 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 believe that they will be the primary carer for life and are often very worried about what will happen to their child when they die. All too often, the stresses of living with someone with autism cause families to break up which adds to the feeling of isolation and despair.