What is autism?
As autism is considered a ‘hidden’ disability (i.e. no one can tell by looking) it can often be misunderstood. According to the National Autistic Society, 99.5% of people in the UK have heard of autism. Yet, only 16% of autistic people and their families feel the public understands how autism affects behaviour.
Autism is a lifelong condition. This means that someone on the autistic spectrum will be autistic for life - it is not an illness or something to be ‘cured’. Autistic people often say being autistic is a key part of their identity.
Autism also sits under the neurodiversity umbrella. The term neurodiversity helps to describe the different ways of thinking we all have. This can help people recognise that neurodivergent brains work in a different way, rather than focusing on perceived ‘deficits’. It can also help people understand why they face certain challenges, and get the support they need.
Characteristics of autism
As mentioned, autism can affect people in different ways. There are however certain traits that may be shared, including the following.
Communication differences
Some autistic people can find communicating with others challenging at times. Interpreting and processing verbal communication can be difficult or induce feelings of anxiety. Sometimes understanding non-verbal communication and tone is also a challenge.
Sensory differences
Some autistic people can experience sensory differences. This may mean they are under or over-sensitive to light, sound, smell, touch or taste. These differences can make some parts of everyday life difficult, leading to overwhelm. Other areas sensory differences can affect include balance and internal self-monitoring.
A preference for routine and consistency
Having a consistent and predictable routine can be comforting to some autistic people. Dealing with communication and sensory differences can cause anxiety. This may lead to a desire to make an unpredictable world a little more predictable through routine.
This preference can make it difficult to cope with change. Autistic people may feel better able to cope when preparations for change are made in advance.
Special interests
Some autistic people have specific and focused interests. These are sometimes referred to as ‘special interests’. They usually begin in childhood and can change as they grow older, or stay the same. Many people channel their interests into meaningful hobbies, paid work or even volunteering.
Having the freedom to pursue their interests is often fundamental for an autistic person’s sense of happiness and well-being.
Autism: where the 'randomness of life' collides and clashes with an individual's need for the sameness.
- Eileen Miller.
Are there ‘treatments’ for autism?
Many people in the neurodivergent community want to shift the focus away from ‘cures’ and ‘treatment’. Instead, they look to celebrate diversity. We are all different and learning about these differences is a small, but significant way to eradicate stigma.
There are therapies that can help autistic people cope better with daily life. As autism affects people in different ways, there are various approaches you may wish to explore.
Is an autism diagnosis beneficial?
Getting formally diagnosed with autism tends to happen in childhood but can also happen later in life. Some people don’t feel it necessary to put a label on themselves, while others find it helpful. Here are some benefits people note on getting diagnosed:
- It can help the person understand why they find some things more difficult than others.
- It can help parents, friends, carers etc. understand an autistic person better and learn how best to help.
- It opens up the opportunity to access support.
What is Asperger’s syndrome?
Asperger’s syndrome was a diagnostic profile used up until 2013. It then became part of the umbrella diagnosis of autism spectrum disorder. The diagnosis is no longer used and is considered controversial by many. However, some people who were previously diagnosed may continue to use this term.
How can autism affect mental health?
Autistic people are more likely to be affected by mental health problems than those not on the spectrum. Mental health concerns can get overshadowed by behavioural traits of autism and therefore overlooked. Below we look at some of the concerns autistic people can face.
Anxiety
It is thought that around 40% of autistic people have an anxiety disorder, compared to 15% of the general population (statistics from the National Autistic Society). This is thought to be down to a combination of reasons including:
- biological differences in the brain
- social difficulties
- struggling with flexible approaches/responses to perceived threats
Autistic burnout
The build-up of anxiety and the stress that can come with social masking can lead to autistic burnout for some. This can be described as intense physical and mental exhaustion and can lead to heightened difficulties with repetition or sensory perception.
Depression
We can all feel sad sometimes, but when it lasts for a long time and gets in the way of everyday life it could be depression. Again, compared to the general population, depression is more common in autistic people.
Dealing with ongoing challenges and anxiety can be instrumental in the development of depression here. It can be difficult to seek help, as communicating feelings can be a challenge. Seeking professional support from a counsellor who has worked in the field of autism may help.
Obsessive-compulsive disorder (OCD)
Obsessive-compulsive disorder (OCD) is a type of anxiety disorder that involves repetitive thoughts and behaviours. Because some autistic people favour routine and repetition, OCD can be overlooked. There is a difference, however, with OCD causing distress in day-to-day life. Getting an assessment from a professional who has experience in both autism and OCD is recommended.
Pathological demand avoidance (PDA)
Pathological demand avoidance, or PDA, is a behaviour profile that is considered (by some) to be seen in some people on the autistic spectrum. Those with PDA share the same challenges as autistic people. On top of this, they are driven to avoid everyday demands to an extreme extent.
This behaviour is rooted in an anxiety-based need for control over a situation. This profile is considered relatively uncommon, however, it is important to note it is a distinct profile that often requires different forms of support.
To find out more, please see The National Autistic Society’s page on PDA.
Lola has missed out on so many opportunities over the years because of the lack of understanding and the use of incorrect strategies.
- Read Jodie's story of autism and pathological demand avoidance.
Getting support as an autistic person
There are times in our life when we all need some support. Autistic people and those who care for them may benefit from seeking additional support on their journey. Below we look at some simple ways to do this.
Connect with other autistic people
Talking to (or reading about) other autistic people can be helpful. There are online and offline support groups and many books about personal accounts available. Connecting with a community that can relate to your experiences is often supportive.
Look into financial benefits and community care
If you are autistic, or you care for someone autistic, you may be eligible for financial and social support. We would recommend reading the benefits section on the National Autistic Society’s website for more information.
Seek professional support
Sometimes, the challenges you have to face (whether you are autistic or you are caring for someone autistic) can get on top of you. This can affect your mental health. Talking to a professional, like a counsellor, can help with this.
A counsellor with experience in autism can encourage you to talk about the way you’re feeling and help you cope better with any challenges you face. They can also offer talking therapies to help with any associated mental health concerns.
What should I be looking for in a counsellor?
There are currently no laws in place around the training a counsellor needs to help autistic people. However, NICE has developed a set of guidelines with advice about the recommended support.
NICE recommends cognitive and/or behavioural therapy, adapted for autistic individuals. To help manage symptoms such as anxiety and/or repetitive thoughts, medication may also be offered. The guidelines also list various therapies that should not be offered, including chelation therapy.
Counsellors supporting autistic people may have to adjust the way they work. For example, including more visual information. Therefore, it is advised that you seek a professional who has specific training and experience in working with autistic people.
Read the full NICE guidelines:
- Autism spectrum disorder in under 19s: support and management
- Autism spectrum disorder in adults: diagnosis and management