Autism spectrum disorders

What is autism spectrum disorder?

Autism spectrum disorder (ASD) is a group of disorders with varying degrees of severity. It is commonly known as autism. Autistic people share certain difficulties but there is a spectrum of severity from mild to severe. The term Asperger's syndrome is no longer used, but used to refer to a less severe form of autism, usually without a learning disability.

ASD is a type of neurodivergency; other neurodivergent conditions include attention deficit hyperactivity disorder (ADHD).

Is ASD a learning disability?

ASD is not a learning disability but many autistic people also have learning disabilities. People with autism may have specific learning difficulties (e.g. dyslexia). Autistic people may also have difficulties with understanding and processing language.

Autism spectrum disorders usually become apparent in the first three years of life. Whilst concerns about ASD are usually raised between the ages of one and two, parents of this cohort often become concerned about development in the first 12 months and seek early intervention. Some children are only diagnosed after they have started school, and there is increasing awareness about the cohort who are not diagnosed until adulthood.

The symptoms of ASD vary. Some autistic people have minimal symptoms whereas others may have severe difficulties.

Signs of ASD in children

For children, the signs that indicate the possibility of ASD include:

• Difficulties with spoken language, such as language delay or limited use of language. Autistic children may struggle to express themselves, may repeat or echo words that they hear back to you, time and time again (this is called echolalia), and may tend to always take words and phrases literally, even when words and phrases are not meant to be taken literally. The way they express themselves may be different from other children their own age.

• Difficulties responding to others, such as avoiding eye contact, not responding when their name is called, or not responding to other people's facial expressions or feelings.

• Difficulty interacting with others. Autistic children may seem to be aloof and have little or no interest in other people; they may prefer their own company to that of friends. They may speak in a flat tone of voice, which can be misinterpreted as showing a lack of interest.

• Reduced use of pointing and other gestures, such as pointing at or showing objects to share an interest.

• Reduced variety of play and difficulties with imaginative play, although people with ASD do not lack imagination. Games and activities tend to be repeated over and over again (repetitive behaviours).

• Becoming upset if routines are changed.

• Unusual or restricted interests and/or rigid and repetitive behaviours.

• Excessive reactions, such as to taste, smell, texture or the appearance of food. Autistic children may have extreme food fads.

• Girls with autism may present very differently from boys and, for this reason, are often diagnosed later. They are less likely to have repetitive behaviours, which parents and those in education may easily recognise as being associated with autism. Obsessive interests may be more accepted if they are felt to be appropriate for a girl, and they may be better at controlling their behaviour in public, due to social conditioning to do so. This can lead to a phenomenon known as the 'coke bottle effect', where a girl is exhausted by the effort of masking all day at school (i.e. their whole day at school is akin to shaking a bottle of fizzy drink), and has an explosion of difficult behaviour/a meltdown at home, akin to taking the lid off the shaken drink. This can cause problems with diagnosis, if reports from school do not fit with what is being experienced at home.

Parents often find these problems very confusing and may become frustrated as they can heavily affect their daily lives. See the separate article How to explain autism to a child for more information.

Seizures (epilepsy) occur in around 30% of those with ASD. Seizures are more common in children who are severely affected by autism spectrum disorders.

Signs of ASD in adults

For adults, the diagnosis of ASD can be difficult but should be considered when a person has:

• Persistent difficulties in social interaction, getting very anxious about social situations, avoiding eye contact, and talking over people. Getting too close to other people, or getting very upset if someone touches or gets too close to them.

• Persistent difficulties in social communication, such as finding it hard to say how they feel, finding it hard to understand what others are thinking or feeling, seeming to be blunt, rude or not interested in others.

• Always taking things very literally.

• Rigid and repetitive behaviours, resistance to change, or restricted interests. Having the same routine every day and feeling unable to cope with any change. Wanting to plan everything very carefully.

• Being very sensitive to patterns, smells or sounds.

• Finding it hard to make friends or preferring to be on their own.

• Persistent and recurrent problems in obtaining or sustaining employment or education.

• As with children, difficulties in women may be less obvious due to social conditioning and masking.

Around one in 100 children have ASD. ASD is more commonly diagnosed in boys but this may be mainly because, as already discussed, autism is often harder to spot in girls who are relatively underdiagnosed.

The cause of autism spectrum disorders is not really known. There is some evidence that they may be genetic conditions passed down in families. Twins and siblings of children with ASD have a higher chance of also being autistic.

There are also some developmental disability conditions in which ASD is more common. Risk factors include Down's syndrome, Tourette's syndrome and tuberous sclerosis.

A first concern about communication difficulties, speech delay, apparent hearing difficulty or behavioural concerns might come from a parent or an educational setting such as a school or nursery. If you have a concern about your child then talk to your GP - pathways vary by area, so a referral might come from the GP or be expected to come from nursery or school.

Issues may also be spotted if the child has a health check to ensure they are developing normally. At these checks you will be asked if you have any concerns. If you have noticed, for instance, that your child doesn't always look at you, or doesn't point to show you things, or doesn't wave or clap, you should mention it.

Your health visitor or doctor may then ask you a few questions and watch your child. They may want your child to have a hearing test. Sometimes hearing problems can make it difficult for a child to be sociable.

If they are concerned about ASD they may ask a specialist team to observe your child. This team will normally be made up of several different types of health professional. They will observe your child over a period of time before making a decision about the diagnosis. Their observations decide whether your child has an ASD.

Blood tests may be taken. These do not test for an ASD but help to look for and rule out other conditions that are associated with autism, including the genetic condition fragile X syndrome.

Treatment for children with ASD

Specialist education and support aim to help with language, social skills and communication skills. Most children with ASD are under the care of a community paediatrician (specialist in children). Other people will also offer support. They might be speech and language therapists, occupational therapists and educational psychologists. The types of treatments offered will depend on the needs of each individual autistic person.

The help and support that may be offered includes:

• Psychosocial interventions, including play-based strategies with parents, carers and teachers, with strategies to expand communication, interactive play and social routines.

• Parent-mediated interventional programmes to help families interact with their child, to support the child's development and increase parental satisfaction, empowerment and mental health.

• Behavioural and developmental programmes to improve overall functioning, address specific behavioural difficulties, such as sleep disturbance, and improve behaviours such as adaptive skills and initiating social contact with peers.

• Early intensive behavioural intervention (EIBI) programmes with a structured learning programme that takes into account the specific needs of each child.

• Speech and language therapy is most effective when speech and language therapists also train and work with teachers, families and peers to improve communication in normal environments.

• Interventions to support social skills (attention, interactive play, responding to social overtures and initiating and maintaining social behaviours).

• Occupational therapy, including sensory integration therapy to help sensory perception issues such as oversensitivity to touch and sounds, helping the development and maintenance of fine motor and adaptive skills, and providing advice and support in adapting environments, activities and routines in daily life.

• Music therapy may help improve skills such as social interaction and verbal communication.

• Advice on diet and food intake from a dietician may be needed if there are significant food selectivity and dysfunctional feeding behaviours, or restricted diets that may cause nutritional deficiencies.

• Interventions for life skills, such as coping strategies and accessing community services, including developing skills to access public transport, employment and leisure facilities.

• Interventions for sleep problems, including identifying the nature of the sleep problem and any underlying factors, such as day and night sleep patterns, and any change to those patterns, whether bedtime is regular, and what the sleep environment is like. A sleep plan may be used to help address the identified sleep problems and to establish a regular night-time sleep pattern. Ask the parents or carers to record the child or young person's sleep and wakefulness throughout the day and night over a two-week period. Use this information to modify the sleep plan if necessary and review the plan regularly until a regular sleep pattern is established.

See also the separate article called How can dogs help support families with autistic children?

Treatment for adults with ASD

The help and support for adults with autism will depend on the individual needs of each individual but may include:

• Psychosocial interventions for adaptive behaviours, communication, social skills, employment, quality of life and any mental health difficulties.

• Social programmes to help improve any communication or behavioural difficulties.

• Interventions to improve emotional literacy, distress tolerance, relaxation skills or general adjustment.

For children and adults with autism, medication does not have a role in treating the core symptoms of autism but may be considered to help with specific ASD-related problems.

Medication may also be considered to help treat associated mental health problems such as anxiety, depression, obsessive-compulsive disorder, challenging behaviour or sleep problems. Medications are only used alongside non-medication treatments and never as the only treatment.

There is no cure for ASD, but that does not stop the internet being full of advertisements for stem cell therapy and other treatments that will apparently provide a cure. These should be avoided.

ASD is affected with a variety of poor outcomes. These may include the following, although not everyone with ASD will experience all of these:

• Failed relationships and social isolation.

• Unemployment.

• Poor general health and a shorter life expectancy than the general population.

• Increased likelihood of being diagnosed with a mental health problem such as anxiety or depression.

• Inability to live independently (for those with severe ASD).

Autism spectrum disorder is a lifelong condition. As the severity can vary, it is difficult to predict the outcome (prognosis) for each child.

Some adults with autism spectrum disorder manage to work and get by with just a little support. However, some autistic people need substantial support.