Find out about this spectrum condition, how it affects people differently and the approaches and interventions available to help support people with autism.

What is Autism?

Autism is a lifelong developmental condition that affects the way a person’s brain works and the way they communicate and make sense of the world. As a result, they may need support in some areas.

What are the main types of Autism?

Autism is a spectrum condition, which means that people are affected in different ways. While many people with autism share common characteristics, everybody’s experience of autism is unique to them.

Autism can be referred to in different ways:

  • Autism spectrum disorder (ASD) – this is the term most commonly used as it is the medical name for autism.
  • Autism spectrum condition (ASC) – another term for autism that is widely used.
  • Asperger syndrome – also known as Asperger’s, this is no longer diagnosed by doctors, and many people are now diagnosed with autism instead. However, some people who were previously diagnosed with Asperger Syndrome still use the term. It is sometimes referred to as ‘high-functioning autism’ because people who fit the Asperger’s profile typically have average or above average intelligence.

How many people have Autism?

Autism was first given its name by psychiatrist Leo Kanner in 1943. Back then, the condition was thought to be rare, but improved understanding and awareness has led to a rapid increase in diagnoses around the world.

Numbers vary by country, but studies suggest that globally, one in every 132 people is on the autism spectrum.1 Research by Autism Spectrum Disorders in the European Union (ASDEU) found that on average across Europe, one in 89 children aged seven to nine years old has some form of ASD.2 In the US, the Centre for Disease Control and Prevention (CDC) reported that the ASD prevalence for eight-year-olds in 2016 was even higher, at one in 54.3

Research published in the Journal of the American Academy of Child & Adolescent Psychiatry also shows that males are affected more than females, with twice as many boys diagnosed with autism as girls4. Scientists are still investigating how autism may impact boys and girls differently, and the ways in which gender might influence its diagnosis.

Symptoms

It’s important to remember that everyone experiences autism differently. Just like anyone else, autistic people have their own strengths and weaknesses, likes and dislikes.

What are the symptoms of Autism?

There are some characteristics that are often shared by people with autism5, however,  these may be noticeable to different degrees depending on each individual.

People with autism often have difficulty with the following:

  • Communication – for some people, this may include limited or no speech; others may have good language skills but struggle to interpret verbal and non-verbal clues, such as tone of voice and body language.
  • Interaction – it’s common for people with autism to find it hard to express their emotions and to understand how others are feeling. This may come across as insensitive or rude and can cause problems when forming friendships with others.
  • Heightened senses – being over- or under-sensitive to light, sound, taste or touch is also very common. This can make everyday situations difficult, such as eating in a restaurant or going shopping, due to things like background music or bright lighting.
  • Unfamiliar situations – routine is often important to autistic people as it helps them to make sense of the world. This may be through eating the same foods, taking the same journeys or ordering their daily activities in the same way.
  • Repetitive movements – behaviours such as hand flapping, rocking or using an object in a repetitive way (such as clicking a pen on and off) are often used as ways to cope with stressful situations.
  • Anxiety – any upset to the situations described above – for example, difficult social interactions or a change to routine – can cause anxiety. Studies show that over one third of autistic people have serious mental health issues.
  • Meltdowns – this is a way of coping when everything becomes too much. It may be verbal, such as shouting and crying, or physical, such as kicking or throwing things – or both. Some autistic people do the opposite and shut down completely.
  • Sleep – children and adolescents with autism often experience disturbed sleeping patterns, including difficulties falling asleep, regular waking in the night and waking early in the morning.
  • Gastrointestinal (GI) problems – some people with autism may also experience gastrointestinal problems such as abdominal pain, constipation and diarrhoea.

What are the early signs of Autism?

Autism is something people are born with or that first appears at a young age, so the first signs are often noticed early in childhood.

In young children, early signs often include not responding to their name, avoiding eye contact, not returning smiles, being slow to start speaking or not speaking at all, making repetitive movements such as flapping hands or rocking, experiencing strong responses to taste, sound and smell and having meltdowns that can seem like temper tantrums.

Older children may also find it hard to express how they feel and to identify with others and they may start developing obsessive interests and find it hard to make friends.

Causes, risk factors and life expectancy

Research into the causes of autism is yet to provide any definitive conclusion, but it does suggest that both genetics and environment may play a role.

What causes Autism?

Nobody knows whether autism has a cause, but it is known that autism is not caused by vaccines, bad parenting, diet or lifestyle, and it is not a contagious condition that can be passed from one person to another. 

Is Autism hereditary?

Sometimes autism can affect people in the same family and there is persuasive research to show that it could be genetic.

Many studies into twins and autism have been carried out, such as the Twins Early Development Study6. This found that if one twin has autism, the likelihood of the other twin also being autistic ranges from 62% to 94% for identical twins and from 5% to 61% for fraternal (non-identical) twins.

While studies like these are helping scientists build a better understanding of the role of DNA (genetic material) in autism, it remains a complicated subject and nothing is conclusive.

Who gets Autism?

Studies suggest that certain factors can play a part, although these aren’t related to everyone with autism so should not be treated as a definitive cause.

For example, children with too many or too few copies of certain genes are more likely to have autism, as well as babies whose mothers battled a severe infection during pregnancy. Research7 suggests that autism symptoms can be more acute when these two factors combine.

How long can you live with Autism?

Autism is a lifelong condition, but while there is no cure, the effects of autism can often be well managed with the right support in place. The section below on treatment and medication explains more about the range of approaches that can help people with autism.

Autism in itself does not lower life expectancy. However, people with autism do tend to die younger than the general population. A study by Karolinska Institutet in Sweden published in The British Journal of Psychiatry8 showed that the leading causes of early death include epilepsy, which people with autism may be vulnerable to, and suicide, which is linked to higher rates of mental health problems among autistic people.

Diagnosis

While autism is often diagnosed in children and young people, some people are not diagnosed until they reach adulthood. This may be because they have learnt ‘mimicking behaviour’ to cover the outward signs or because another related diagnosis was made in childhood, while autism went undetected. 

Depending on your age, your route to diagnosis will be slightly different.

How is Autism diagnosed?

The first stage is to talk to a health professional. This may be:
  • A health visitor for pre-school children
  • A special educational needs coordinator for school children
  • A GP or primary care doctor
  • Other health professionals such as a therapist or specialist doctor
  • A social worker
If one of these professionals thinks you or your child may have autism, they can refer you for an autism assessment, which will be done by autism clinicians. The process of diagnosis can take time. It’s a good idea to find out what additional support is available from your doctor or local autism charities during the pre-diagnosis phase.

Test to diagnose Autism

Autism is usually diagnosed after an assessment which involves a range of tests. These may take place in one long assessment or over a number of appointments. The tests vary between children and adults.

The tests for children include a range of observations to see how a child plays and interacts, and the assessment team may visit schools or nurseries to see how they behave there. They will also read through reports from the child’s doctor, school or nursery and talk to parents or carers in depth about their child’s development.

Assessments for adults involve looking at doctors’ reports and questionnaires that the adult being assessed will be asked to complete. Assessors may also want to get a better picture of how the adult behaved as a child, by talking to people they were close to in childhood.

Treatment and medication

Autism is a lifelong disability and there is no cure or set treatment. It’s better to think of treatment in terms of support – there are a range of approaches that can be used to help people with autism manage their difficulties and live life to the full.

How is Autism trated?

Because autism is a complex condition that affects people differently, the approaches will depend on the individual’s needs and may well change over the course of their life.

Many autistic people also have co-existing conditions, such as a learning disability, mental health problems, epilepsy, sleep problems and digestive issues. Certain treatments or support methods may be helpful for these and should always be monitored carefully.

Medication

At the moment there are no medications that can cure autism but different interventions may be helpful and can improve behaviour, skills and language development. Moreover, pharmacological approaches can help in dealing with neurological, psychiatric and other co-occurring conditions. These include antiepileptics, antipsychotics, stimulants and hypnotics.

Therapy

Therapy can play a significant role in supporting people with autism. It can help people come to terms with their condition and develop coping strategies and relaxation techniques.

Therapists use different approaches depending on their training and what the individual needs help with. These may include:

Cognitive behavioural therapy (CBT) – a useful therapy to help deal with negative thinking patterns and to help connect thoughts to emotions and actions.

Play therapy – often used with children by encouraging them to engage in play activities of their choice alongside a play therapist to improve their social and emotional skills, help them think in different ways, and improve language and communication skills9.

Other specialist therapies – such as speech and language therapy, physiotherapy and occupational therapy.

You may be referred to these services via your doctor or another health professional, it may be offered by your employer or your child’s school or you may seek it out privately.

If you choose to find a private counsellor, check that they are a member of an appropriate professional organisation.

Intervention

Research shows10,11 that interventions that combine psychological and social factors play an important part in helping people with autism. For children and young people, these include play-based strategies with parents, carers and teachers. For adults, employment support programmes, structured leisure activities and social skills training can be helpful.

Many children with autism will receive extra support through the education system. Some may remain in mainstream education and receive teaching support through special needs support, and others will be offered a place in a school that specialises in educating children with autism and other disabilities.

These kinds of interventions can be critical in helping people with autism to develop life skills and manage stress-related behaviours like harming themselves or damaging things around them.

Diet

Some people find that specific dietary approaches – can be beneficial. Some studies12 have looked at different dietary interventions and found that they could be potentially helpful, but wider research is needed to provide stronger evidence.

Exercices

Exercise is crucial in maintaining good health and wellbeing for autistic children and adults. Not only can it offer excellent opportunities for interaction and practising social skills in a relaxed setting, it also helps to improve fitness and muscle strength. This is especially important because studies13 show that children with autism typically have lower muscular strength and endurance than other children in their age group.

Finding the most appropriate activity for the individual is key. Many autistic people prefer to go to quieter places or join smaller groups, and usually prefer to be with the same people and activity leader every time, so they know what to expect.

Exercise with animals – such as horse riding – can provide a positive way to interact nonverbally. It is also a good idea to consider which activities help to develop certain skills, such as balance, flexibility and coordination, as well as those that incorporate running, catching and throwing.

Scientific studies

Our understanding and awareness of autism has developed rapidly in the past few decades, and research plays a key part in this. In 2019 the National Institute of Health in America awarded more than four million dollars to a number of research projects aimed at developing screening tools to detect signs of autism spectrum disorder in the first year of life.

However, when it comes to looking at broad figures – such as the number of people who are autistic – different study methods are often used in different countries. This can make it hard to make meaningful comparisons about how autism affects people.

For example, some studies include Asperger Syndrome when researching autism and others don’t. This can greatly affect statistics on gender, as a much higher proportion of males are diagnosed with Asperger’s. Similarly, statistics only tell part of the story, as it is believed that many adults and many females remain undiagnosed.

Studies into co-existing conditions can be helpful in building a better understanding of the needs of autistic people. For example, research14 shows that around 50% of people with autism also suffer from anxiety or depression. This compares to roughly 15% of the neurotypical (individuals of typical developmental, intellectual, and cognitive abilities) population and helps to develop a strong case for mental health support for people with autism.

Referenced sources

  1. Medscape. What is the global prevalence of autism spectrum disorder (ASD)?. Updated September 2019. Accessed December 2020. https://www.medscape.com/answers/912781-193662/what-is-the-global-prevalence-of-autism-spectrum-disorder-asd
  2. Autism Spectrum Disorders in the European Union (ASDEU). Autism Spectrum Disorders in the European Union Executive summary 12/09/2018. Accessed December 2020. http://asdeu.eu/wp-content/uploads/2016/12/ASDEUExecSummary27September2018.pdf 
  3. Maenner MJ, Shaw KA, Baio J, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR Surveill Summ. 2020; 69(4): 1-4. Updated March 26, 2020. doi: 10.15585/mmwr.ss6904a1
  4. Loomes R, Hull L and Polmear Locke Mandy W. What Is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis. American Academy of Child & Adolescent Psychiatry. 2017; 56(6): 466-474. doi: 10.1016/j.jaac.2017.03.013
  5. NHS. Signs of autism. Accessed January 2021. https://www.nhs.uk/conditions/autism/signs/ 
  6. Spectrum News. Genes dwarf environment in autisms origins study says. April 2015. Accessed December 2020. https://www.spectrumnews.org/news/genes-dwarf-environment-in-autisms-origins-study-says/
  7. Sprectrum News. Maternal infection exacerbates genes’ effect on autism.February 2015.  Accessed December 2020. https://www.spectrumnews.org/news/maternal-infection-exacerbates-genes-effect-on-autism/ 
  8. Hirvikoski T, Mittendorfer-Rutz E et al. Premature mortality in autism spectrum disorder. The British Journal of Psychiatry. 2016; 208(3): 232-238. doi:10.1192/bjp.bp.114.160192
  9. WebMD. Play therapy for autism: What to know. Accessed January 2021. https://www.webmd.com/brain/autism/play-therapy-for-autism 
  10. National Institute for Health and Care Excellence (NICE). Autism spectrum disorder in adults: diagnosis and management. June 2012. Updated August 2016. Accessed December 2020. https://www.nice.org.uk/guidance/cg142
  11. National Institute for Health and Care Excellence (NICE). Autism spectrum disorder in under 19s: support and management. August 28, 2013. Accessed December 2020. https://www.nice.org.uk/guidance/cg170 
  12. Lee R, Corley M et al. A modified ketogenic gluten-free diet with MCT improves behavior in children with autism spectrum disorder. Physiology & Behavior. 2018; 188: 205-211. doi: 10.1016/j.physbeh.2018.02.006
  13. Chien Yu P. Motor proficiency and physical fitness in adolescent males with and without autism spectrum disorders. Autism: the international journal of research and practice. 2014; 18(2): 156-65. doi: 10.1177/1362361312458597
  14. Autism Alliance. Autism Frequently asked questions. Accessed December 2020. https://www.autism-alliance.org.uk/autism-f-a-qs/
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