There are an estimated 700,000 people in the UK on the autistic spectrum, which equates to one in 100 people. So, what exactly is autism?
Autism is a developmental disability that affects certain aspects of behaviour, including interacting with others. It works on a spectrum. This means that while all autistic people share similar traits, they will be affected in different ways and at differing severity.
As autism is considered a ‘hidden’ disability (i.e. no one can tell by looking) it is often misunderstood. According to the National Autistic Society, while 99.5% of people in the UK have heard of autism, only 16% of autistic people and their families feel the public understands how autism affects behaviour.
On this page, we will look at the way autism affects people’s view of the world and the challenges autistic people may face. We will also explore how getting support along the way can help improve quality of life.
In the video below we reached out on social media to ask autistic people and their families, 'what is one thing you wish people knew about autism?' here are their responses:
What is autism?
Autism is a lifelong developmental disability. This means that someone on the autistic spectrum will have it for life - it is not an illness or something that can be ‘cured’. Autistic people often say being autistic is a key part of who they are.
Because autism is a spectrum condition, people are affected differently. There are certain qualities that those on the spectrum will share, however the severity and nature of these will differ from person to person. Some autistic people will therefore need more support than others.
Below we look at some of the key characteristics of autism.
Autistic people can find communicating and interacting with others difficult. Interpreting what others say and the way they say it can be challenging. Autistic people tend to take things very literally and can struggle to understand non-verbal communication, tone of voice and sarcasm.
Sometimes the language itself isn’t a problem, but knowing what is expected from someone in a conversation is. This can lead an autistic person to miss social cues in a conversation.
Those on the spectrum may be under or over-sensitive to light, colour, sound, touch or taste. Being over-sensitive to these things can make some parts of everyday life difficult, causing the person to feel overwhelmed. If they are under-sensitive to something, they may become fascinated by things like lights or spinning objects.
Routines and repetitive behaviours
Having a set routine can be very comforting to autistic people. Dealing with communication difficulties and sensory sensitivity can cause anxiety, so making an unpredictable world a little more predictable feels safe.
This desire for routine, rules and repetition can make it difficult to embrace change and take a different approach to something. Autistic people may therefore feel better able to cope when preparations for change are made in advance.
Autistic people often have specific and highly focused interests. These usually begin in childhood and can change as they grow older, or stay the same. Many autistic 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.
What causes autism?
The cause of autism continues to be researched. So far, existing research suggests there are a combination of factors, including genetic and environmental. Statistics also show that more men are diagnosed with autism than women.
Are there ‘treatments’ for autism?
Currently, there are no ‘treatments’ or ‘cures’ for autism. There are however approaches and therapies that can help someone on the spectrum cope better with daily life. As autism affects people in different ways, there are various approaches you may wish to explore.
Many autistic people are keen to shift the focus away from ‘cures’ and ‘treatment’ and instead celebrate diversity. We are all different and learning about these differences is a small, but significant way to eradicate stigma.
Why diagnosis can be beneficial
Getting formally diagnosed with autism tends to happen in childhood but can 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 to getting diagnosed:
- It can help the autistic 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 techniques/approaches that may improve day-to-day life.
- It opens up the opportunity to access support.
Autism: where the 'randomness of life' collides and clashes with an individual's need for the sameness.
- Eileen Miller.
There are times in our life when we all need some support. Autistic people and those who care for them often 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. While autism affects people differently, the challenges can be similar and seeing how others cope with these can be comforting.
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 the challenges you face. They can also offer talking therapies to help with any associated mental health concerns.
Autism and mental health
Autistic people are more likely to be affected by mental health problems than those not on the spectrum. Unfortunately however, mental health can get overshadowed by behaviour traits of autism and therefore overlooked. Below we look at some of the common concerns autistic people can face.
In autistic people, it is estimated that around 40% have an anxiety disorder, compared to 15% of the general population (statistic from the National Autistic Society). This is thought to be down to a combination of reasons including biological differences in the brain, social difficulties and struggling with flexible approaches/responses to perceived threats.
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 those on the spectrum.
Dealing with ongoing challenges and anxiety can be instrumental in the development of depression in autistic people. It can be very difficult to seek help, as autistic people might find change daunting. Communicating feelings can also be difficult. Seeking professional support from a counsellor who has worked in the field of autism may help.
Obsessive compulsive disorder (OCD)
Obsessive compulsive disorder, or OCD as it is commonly known, is a type of anxiety disorder that involves repetitive thoughts and behaviours. Because autistic people often 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.
Asperger’s syndrome and pathological demand avoidance (PDA)
Asperger’s syndrome is a form of autism. While the traits are similar, there are some differences. To find out more, we encourage you to read our Asperger’s syndrome fact-sheet.
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.
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.
To find out more, please see The National Autistic Society’s page on PDA.
What should I be looking for in a counsellor or psychotherapist?
There are currently no laws in place stipulating what training and qualifications a counsellor must have to help autistic people. However, NICE has developed a set of guidelines that provide advice about the recommended approaches.
In terms of psychological support, NICE recommend cognitive behavioural therapy and/or behavioural therapy. To help manage symptoms such as anxiety and/or repetitive thoughts, medication may also be offered. The guidelines also list various therapies and treatments that should not be offered, including chelation therapy.
Counsellors supporting autistic people or those with Asperger's syndrome 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 people within the autistic spectrum.
Read the full NICE guidelines:
Find a therapist dealing with autism
All therapists are verified professionals.