Autism spectrum disorder
- Dr Sammad Hashmi, Consultant Psychiatrist
Autism spectrum disorder (ASD) is a condition that makes your brain work differently from other people’s. It can affect how you behave and interact with others. Living with ASD can be difficult. But getting support can help you to manage any difficulties you have.
About autism spectrum disorder
Autism spectrum disorder (ASD) is something that you develop during childhood and then have for life. For most people with ASD, signs of autism are first noticed during childhood. But some people may not recognise that they have the condition until they are adults.
It’s thought that around one in every 100 people have ASD. Boys are four times more likely to be diagnosed with it than girls. This may be partly because the signs of ASD in girls can be less obvious. This means girls may be less likely to be diagnosed than boys.
Features of autism spectrum disorder
If you have ASD, you may see and respond to the world in ways that are different from other people. You may:
- have difficulties with social situations
- find it hard to understand and relate to other people
- find change difficult to manage and prefer daily routines
- have intense interests in certain things
- be under-sensitive or over-sensitive to certain stimuli – like sounds, smells, tastes or textures
ASD is a spectrum. This means that different people are affected in different ways and to different degrees. Some people may just have a few minor problems while others may need more support and care.
Conditions associated with autism spectrum disorder
Many people with ASD also have other health conditions and difficulties. These include:
- mental health conditions such as anxiety and depression
- attention deficit hyperactivity disorder (ADHD)
- learning difficulties
- epilepsy
- difficulties sleeping
- problems with digestion and eating
Asperger’s syndrome is a particular type of ASD. It’s now considered to be a form of ASD rather than a separate condition. But you may still hear some people use the term Asperger’s syndrome. People with Asperger’s syndrome are less likely to have the learning difficulties associated with ASD.
Causes of autistic spectrum disorder
No one knows exactly what causes autism spectrum disorder (ASD). It’s likely to be a mix of factors rather than one single thing.
ASD can run in families. That means you may be more likely to have it if a parent, a brother or a sister has it. But most people diagnosed with ASD don’t have a relative who has it.
Other factors that may be linked with an increased likelihood of ASD include:
- having older parents
- being born early and underweight
- being born with certain problems (birth defects) such as cerebral palsy
- developing certain infections soon after birth
- your mother taking a drug called sodium valproate during pregnancy
- your mother having health problems during pregnancy, including diabetes, an infection or a mental health condition
Vitamin D deficiency during pregnancy is being investigated as a possible factor in ASD development but further research is needed to confirm a link. Lots of research has proven that there is no link between ASD and the MMR (measles, mumps and rubella) vaccine.
Signs of autism spectrum disorder
The signs of autism spectrum disorder (ASD) can be very different in different people. And the way ASD affects you can change as you get older. Some of the main signs of ASD are listed below for children and for adults.
Signs of autism in children
Parents of children with ASD often notice unusual behaviour or delays with development before they are 18 months old. Childcare and health professionals in contact with children may pick up on signs too.
Some of the key signs in children can include:
- not making eye contact
- not responding to their name
- lacking facial expressions – or not responding to other people’s
- having delays with talking, not talking at all or having unusual speech (such as repeating words)
- talking ‘at’ other people rather than having a two-way conversation
- lacking awareness of personal space
- not having much interest in other children their age and preferring to spend time on their own
- finding creative or imaginative play difficult
- having an extreme negative response when asked to do something
- repetitive behaviour such as flapping their hands, spinning or rocking their body
- difficulty coping with change, having strict routines and rigid expectations about following rules
- having an overwhelming or unusual interest in something
- taking things literally, misunderstanding sarcasm and phrases such as ‘break a leg’
- being under-sensitive or over-sensitive to stimuli such as a noises, smells, tastes or textures
It’s important to be aware that girls can show fewer typical signs of ASD. They may:
- have more sensory issues than boys, rather than problems with communication and social interaction
- have intense interests, but ones that tend to be like those of other girls their age
- be more likely than boys to ‘mask’ symptoms of ASD by copying behaviours of other people their age
Signs of autism in adults
The difficulties and challenges people with ASD may experience during childhood can continue into adult life. Signs of ASD as an adult include:
- ongoing difficulties with social interaction
- ongoing difficulties with social communication
- rigid or repetitive behaviours
- resistance to change
- having very focused interests
These difficulties and behaviours can lead to problems getting a job or completing education. They can also lead to problems in maintaining friendships and relationships.
Diagnosis of autism spectrum disorder
To get a diagnosis of ASD, you usually need an assessment by a specialist team. This might include doctors, psychologists, speech and language therapists and other health professionals. For children, the team should include either a specialist in children’s health (paediatrician) or a specialist in children’s mental health (child and adolescent psychiatrist).
Seeing a GP about autism
If you think you or your child might be showing signs of ASD, see your GP (or health visitor for children). It’s worth keeping a record of any signs or behaviour you’re concerned about. Your GP will ask you about your concerns and how they affect your or your child’s daily life. If you’re seeing the GP about yourself, they may ask you to complete a questionnaire.
If your GP thinks you or your child has signs that suggest ASD, they will offer you a referral to the specialist ASD team. If your child doesn’t seem to be having too many difficulties, your GP may suggest a period of ‘watchful waiting’. They’ll review your child again after this period to see if their problems have continued or if they have developed any other signs.
Waiting for an autism diagnosis
It can take a long time to get an autism assessment on the NHS after your GP has referred you – often at least several months. This will be different in different areas, so ask your GP how long it’s likely to be for you. There are also private services that offer ASD assessments but you will need to pay for this. If this is an option for you, you could ask your GP for a recommendation.
If you’re waiting for an autism assessment, talk to your GP, health visitor or school about any support they can offer in the meantime. Schools and nurseries should have a member of staff to help children who need support with special educational needs. This is known as a special educational needs co-ordinator (SEN co-ordinator or SENCO).
Autism assessment
If your child is having an autism assessment, you should be given the name of a case co-ordinator. This person is your main point of contact. They should update you on what will happen and the likely timings. You’re likely to see several different health professionals for your child’s assessment. As part of the assessment, the ASD team may:
- ask about your child’s development and how they act and behave at home and at nursery or school
- watch and interact with your child to see what their social and communication skills are like
- ask about any family history of ASD and any other relevant medical history
- do a physical examination
- test for other health conditions
- look at reports from your child’s school or nursery or visit them there
If you’re having an assessment as an adult, your doctor will ask about the difficulties you’re having and how these affect you. They may watch how you behave and interact with people. They will also assess whether you have any other conditions.
Getting an autism diagnosis
After the assessment, your case co-ordinator will discuss the findings of the team with you. You’ll also get a written report. If you or your child has a condition that overlaps ASD – for example, attention deficit hyperactivity disorder (ADHD) – that may also be in the report. The ASD team will share the report with your GP. If you agree, the information will be shared with your child’s nursery or school and any relevant social care organisations.
You may be worried or distressed at the thought of getting an ASD diagnosis for your child. But many parents find it a relief because the diagnosis helps to explain some of the difficulties their child has been having. Having a diagnosis also helps to get the right support at home and at school. If your child has had an assessment and you disagree with the diagnosis, you can ask for a second opinion from a different team.
Support for autism spectrum disorder
There isn’t a cure for autism spectrum disorder (ASD) – it’s something that you have for life. But there are ways to manage the challenges that come with it. People with ASD have their individual strengths, difficulties and needs – just like anyone else. What works best for you or your child will depend on how you or they are affected by ASD.
You or your child should receive support and care from a team of ASD specialists in your local area. They should create a management plan based on your or your child’s particular needs. They should also organise care or treatments for any related health problems. These may include learning difficulties, mental health problems or problems with sleep or speech.
Support for children with autism
Children should have a key worker or case manager who co-ordinates their care. This support should extend to the whole family, including any brothers and sisters.
Your child’s team will give you advice on ways to manage your child’s behaviour and any social and communication challenges.
You should also be given contact details for local or national organisations specialising in ASD. These organisations may offer:
- information on courses about ASD
- support for families with ASD, including the opportunity to meet other people with similar experiences
- advice on benefits, rights and entitlements
Support for adults with autism
As an adult with ASD, you may be offered:
- a course to help with social skills – either alone or in a group with other people with ASD
- training programmes to help with life skills – these might be based around activities and interests you enjoy
- advice and strategies for you and your family, partner or carer on how to prevent and manage challenging behaviour
- help to manage anger if this is an issue – this might include relaxation activities and developing problem-solving or coping skills
- a supported employment programme to help you get a job, if you have difficulty finding or staying in a job
If you’re a partner, relative or carer of an adult with ASD, you should be offered support too. This may include information, advice, and training if needed, as well as putting you in touch with support groups who can help.
Living with autism spectrum disorder
Having ASD can make home, school and work life difficult. But putting strategies in place can help you or your child to deal with these challenges and live a fulfilling life.
Routines and coping with change
People with ASD feel safer with routines, so any change can be very stressful. Many people with ASD also have sensory difficulties – for example, being over-sensitive to loud noises or bright lights. This can make day-to-day activities such as shopping, travelling on public transport and going to the doctor or dentist really challenging. At times, these stressful situations can lead someone with ASD to completely lose control of their behaviour (sometimes known as a ‘meltdown’).
There are things you can do to help prevent this.
- Try to keep your days to a familiar structure and routine at home. For example, this might include eating meals and going out at certain times.
- For children with ASD, introduce changes in routines slowly and gradually, and try to actively involve them. You can help prepare for uncertainty by explaining different options or scenarios that may happen.
- If you are doing something or going somewhere new, take time to prepare your child beforehand. Describe what’s going to happen clearly and carefully. Using visual aids such as photos, websites and videos can be very helpful for people with ASD.
- Think about how you can manage your child’s sensory needs, both at home and when out and about. At home, it could mean changing lighting, noise levels and colours of walls or furnishings. If noise is an issue, it might mean taking headphones when going out to block out noise around you.
- Explore ways to deal with stress and anxiety. This might include having a stress ball, fidget toy or comfort object or toy with you, or listening to some calm music. This can help to keep anxiety levels down even in stressful situations.
Autism and education
If your child has ASD, letting their nursery, school or college know can help the institution to provide any extra help and support needed. Your child’s school or nursery should have a special educational needs co-ordinator (SENCO) to manage this.
Many children with ASD go to a mainstream school. But if your child is severely affected by ASD and needs a lot of support, a special school may be better able to provide this.
If you or your child needs more support than SENCO services can provide, you will need to apply for an Education, health and care (EHC) plan. You do this through your local authority. You can apply yourself if you’re between 16 and 25. An EHC plan identifies what support is required and the funding needed to provide these services.
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- Pippa Coulter, Freelance Health Editor
