Are you wondering how to support an autistic person? If you’re new to caring, or this is your first time supporting an autistic person, you probably want to learn more about the autism spectrum and how to help.
In this article, we’ll explain what autism is and some of the related terminology, how to support an autistic person, conditions that often occur with autism, and how to support an autistic family member.
What is autism?
Autism is a lifelong disability. It can affect how people behave, communicate, and respond to certain sensations or situations.
Some people describe autism as causing an uneven or spiky profile. This means that an autistic person may have very different levels of ability in different areas. For example, they may be an excellent writer but struggle to talk to people in social situations.
Both men and women can be autistic, and it’s not clear what causes it. Autism is not caused by vaccines, diet, or poor parenting.
Common autistic traits
Every autistic person is different, but there are some common traits that many people experience.
- Not understanding social rules
- Finding it difficult to understand what others mean, especially if they are using non-literal language
- Experiencing anxiety in social situations
- Having sensory sensitivities
- Noticing things that others don’t, such as patterns, small noises, or slight changes
- Engaging in repetitive behaviour
- Relying on routines and becoming upset at changes
- Having highly-focused interests
Key autism terminology
In the past, some people preferred the phrasing “a person with autism”. Nowadays, most people prefer to be called autistic.
Other important terminology may include:
- masking: some autistic people may attempt to appear non-autistic in certain situations. They may do this to avoid discrimination, to make friends, to succeed in a job, or just because it’s become a habit over time. However, masking can be very tiring, and may lead to more meltdowns later on.
- meltdown: this is what may happen when an autistic person becomes overwhelmed. It may be caused by sensory overload, anxiety, or unexpected changes in routine. A meltdown may include crying, growling or shouting, as well as physical responses, such as hand flapping, banging their head against a wall, or aggression. Meltdowns are not tantrums, and they aren’t deliberate.
- neurodivergent: a term that describes someone whose brain works differently. This may include autistic people, as well as people with ADHD, Tourette’s syndrome, and other conditions.
- neurotypical: a term for someone who is not autistic.
- pathological demand avoidance (PDA): a strong resistance to any kind of demand, including direct requests, implied requests, and personal needs such as eating or toileting. Some autistic people experience PDA, although it is not usually clinically diagnosed.
- stimming: also known as self-stimulating behaviour, stimming is any kind of repetitive movement or sound that autistic people do or make. This may include hand flapping, rocking, spinning, or repeatedly feeling or moving an object. Some autistic people may stim to deal with anxiety, to avoid focusing on something unpleasant, or just because they enjoy it.
Some of the language used to describe autism and autistic people has changed over the years. There are some terms that are no longer preferred, but that you may come across in older literature:
- Asperger’s Syndrome: a diagnosis previously given to some autistic people. This diagnosis is no longer used, and people who would have been diagnosed with Asperger’s Syndrome in the past now usually receive an autism diagnosis.
- Functioning labels, such as high-functioning and low-functioning: these terms were used as a way to describe people’s support needs. However, they did not accurately describe how many autistic people’s needs are different in different scenarios. Nowadays, most people prefer to talk about high support needs, low support needs, or learning disabilities.
How to support an autistic person – the basics
Supporting an autistic person is, in many ways, the same as supporting any other client. You should work with them to support their needs and achieve their desired outcomes.
However, there are a few other things that should be considered when supporting an autistic individual.
- Explain changes to routine and transitions in advance. For example, if you’re preparing food for the person, they may need advance warning that they will have to stop their current activity to eat.
- Be patient, as the autistic person may prefer to work to their own schedule.
- Use literal, non-ambiguous language, so that the person understands what you mean. Many autistic people struggle with metaphors and figurative language.
- Avoid wearing strong-smelling perfume or aftershave, as the person you support may have sensory sensitivities.
- Learn about any interests or hobbies, as these could be a way to connect.
Before you begin supporting an autistic person, you could ask some questions to make the process easier. Depending on the situation, you may need to ask the person themselves, a family member, or another member of their care team. Questions could include:
- I know some autistic people don’t like being touched. When I provide personal care, how do you want me to handle tasks that involve touch?
- Do you have any safe foods that you like to eat?
- When you’re having a meltdown, is there something that helps you feel safe?
- Do you use any equipment like ear defenders, white noise, or sensory toys?
Read also: support for autism carers.
How to support an autistic person – the challenges
As a care worker, you know that there can be challenges supporting any client. However, when considering how to support someone with autism, there may be some additional concerns.
Autism and challenging behaviour
Sometimes, autistic people display challenging behaviour, such as self-harming, biting, hitting, or other forms of aggression.
This behaviour is usually caused by distress, even if you can’t immediately see what the trigger is. You may find it helpful to keep a behaviour diary to find patterns in triggers or causes.
If possible, when an autistic person displays this behaviour, redirect them to another activity. Remove any discomforts – for example, if loud noises are causing issues, provide ear defenders.
The person’s GP may be able to arrange a referral to a behavioural specialist.
Autism and communication
Some autistic people have limited speech. This may be due to learning disabilities or other conditions. Alternatively, it may be intermittent, and they may struggle to speak when they are overwhelmed.
Be aware that speaking is not the only way to communicate. There are a variety of alternative communication methods that may help autistic people.
Autism and depression
Autistic people are more likely to develop depression than the general population.
You should be aware of the signs of depression, which may include:
- Feeling sad or low for an extended time
- No longer enjoying favourite activities
- Appetite changes
- Sleep changes
- Becoming withdrawn
- Self-harming
- Talking about suicidal feelings
If someone you support may be depressed, encourage or help them talk to a trusted healthcare professional.
How to support autistic people and other conditions
Some autistic people also have other conditions, which may affect how you support them.
Autism and learning disabilities
Autism is not a learning disability, and many autistic people excel academically. However, some autistic people also have a learning disability.
Learning disabilities can impact people’s communication, understanding and coordination.
Some people with learning disabilities require a high level of support, whereas others may just need a few reminders each day. Depending on the person’s individual needs, you may need to support them with a variety of tasks. This may include personal care, preparing meals, transportation, reading and general admin.
Autism and ADHD
Autistic people may also have ADHD (attention deficit hyperactivity disorder). This is a condition that can cause problems with focus, concentration and impulsivity. Like autism, it’s also a lifelong condition.
For some people, ADHD can be managed with medication and therapy. Lots of people with ADHD also find that physical activity can help.
If you’re caring for someone with autism and ADHD, you may need to help them manage medication, ensure that they are safe if they’re acting impulsively, and support them with routines.
Some autistic people with ADHD may be described as AuDHD.
Autism and epilepsy
Epilepsy is a condition that causes seizures.
Autistic people are more likely to have epilepsy than people who are neurotypical. If the autistic person has a learning disability, they are even more likely to develop epilepsy. However, epilepsy and seizures do not cause autism.
Epilepsy can often be treated with medication, or, in some cases, diet or surgery.
If you’re caring for an autistic person with epilepsy, you may need to:
- Support them with medication
- Keep them safe during seizures
- Take note of any patterns or triggers around seizures
- Give first aid or call for medical help during or after a seizure
How to support an autistic person as a family carer
Maybe you’re not a professional carer, but you support an autistic family member. Your experience will be different depending on your family member’s age – caring for an autistic child is not the same as supporting an autistic adult, for example.
If you’re wondering how to support an autistic person in your family, it can be easy to fall into the trap of hoping for a “cure”. However, autism is a lifelong condition, and you should be careful if anyone suggests that they can cure your family member. The NHS has a list of treatments that are not recommended for autistic people.
Instead, therapies and treatments for autistic people should focus on helping them to develop skills to support them in daily life and manage harmful or dangerous behaviours.
Finally, as a family carer, it’s important to plan for the future. If you were unable to support your family member, what would happen to them? Are there other family members who could help, or could you look into respite care? Alternatively, would the autistic person benefit from support from a professional carer, visiting a day centre, or moving to residential care in the future?
Make sure you’ve also checked whether you may be eligible for carer’s allowance for additional financial support.
