In our latest Let’s Talk health feature we decided to take a slightly different angle. For June, we’ve spoken to Tom Purser from the National Autistic Society to help raise awareness of this disability; hopefully helping to signpost some of you to helpful resources should you need it, or simply raise your understanding of the 1.1% (700,000 people) of the UK population who are autistic.
What is autism?
There are two perspectives when it comes to understanding what autism is. The definition is that it is a lifelong developmental disability that people are born with. It affects the way individuals develop, their language, skills and social interactions.
Then there is the personal perspective. Autistic people have reported that they can feel overwhelmed by what they’re seeing, hearing and the information they’re processing in these ways and more – this is the aspect that National Autistic Society are currently focusing on in a campaign called ‘Too Much Information.’
Autism also affects the way people interact with others and the world around them. And it’s different for each individual. Every autistic person will experience specific challenges and could also face a broad range of issues which include but are not limited to: struggling with social interactions, communication, facial expressions, tone of voice etc. Autistic people can also be highly sensitive to things like light, sound and or touch and this can make the world an overwhelming place.
This doesn’t begin to capture the whole picture. As mentioned, the National Autistic Society are currently working with autistic people and families in a campaign called ‘Too Much Information’ to help the population better understand what an individual, and those that care for them, experience. The charity says that what autistic people most want the public to understand is that they can experience anxiety in social situations and with unexpected changes, sensory differences, require more time to process all kinds of information (verbal, written, more general experiences). And importantly, when autistic people, particularly children, experience a particularly challenging time, they can become overloaded with information and feel so overwhelmed that they have what is commonly known as a ‘melt-down’.
According to the National Autistic Society’s research, autistic people feel the general public still don’t understand their autism and often react negatively to behaviour associated with their autism, by staring or tutting. 28% even reported that they’d been asked to leave a public place. What we would encourage you to do, is to learn 5 things about autism so that you can better understand and help to accommodate individuals going through a challenging experience. Most importantly, give them time and space and empathy and support without judgement.
Currently, in the UK, there are thought to be around 700,000 autistic people (1.1% of the population) ; 140,000 of those are school age children and over 70% of them are estimated to be in mainstream schools. While diagnosis and support have improved, the National Autistic Society says there is still have a long way to go and are campaigning for change.
We feel that it’s worth mentioning that autism is not to be confused with other disabilities or behavioural disorders such as ADHD. There are quite different categorisations of these conditions. However, some autistic people may have other conditions or behavioural issues and some individuals can be autistic and have an accompanying learning disability.
What is the process for diagnosis
Many autistic people and parents describe their own or their child’s diagnosis as life changing. It can explain why someone has always felt different, give a parent a better understanding of their child and help unlock barriers to vital support.
The only way to get a diagnosis is through an assessment, which takes place over several sessions, usually starting with a GP referral. During the diagnostic process the individual will partake in a series of appointments which will be a mixture of interviews, questions, observations and a review of medical and developmental history.
Of course, it isn’t always plain sailing. The National Autistic Society receive numerous reports that there can be difficulties in receiving a referral through a GP whether because of a lack of knowledge of the systems or an understanding of autism to make that referral – and unacceptably long waiting times between referral and a first diagnostic appointment in certain areas of the country.
There are also instances where a parent or child have several years of concerns before a recommendation to even see a GP is made – often it isn’t easy to recognise autism, which is sometimes referred to as a ‘hidden disability’, particularly in girls. In these instances, the National Autistic Society’s website has lots of information and guidance to help you achieve that referral or signpost you if you’ve already received a diagnosis.
Additionally, the charity recommends gathering as much information as possible, before going to a GP, about the experiences that you or your child have had to indicate whether a diagnosis or further support is required. This can help make initial GP meetings easier to help you get further referrals. The National Autistic Society can help guide you through the referral process if you feel you’re hitting a brick wall time after time – and how to go about trying to access support.
How to support autistic people and their families or carers
Once diagnosis has been achieved it’s about finding the right education and support available; this may be additional support in schools and assistance in other areas of your life, such as social care support or reasonable adjustments in the workplace. Unfortunately accessing this support can be a huge battle but there is information on the National Autistic Society’s website.
Additionally, there are tools available for you to access.
The National Autistic Society offers an EarlyBird course for parents with pre-school children who are on the autism spectrum. This course helps to teach parents ways to support their children at home and to help further educate parents around what autism is. There is also the opportunity meet other parents and build a support network.
It can be at times quite isolating if you think no-one else is going through the same experience, or you’re having challenges with your child that you’re only learning to understand. Then of course there is the stigma often still attached to autism and you may even witness your children not being invited to parties etc. The National Autistic Society have 116 volunteer led branches that hold coffee mornings, signpost, provide local advice and guidance and much more. So there is support available for you to help you cope with the day-to-day and to help navigate relationships with others, whether it’s your child, another family member or a friend.
The National Autistic Society also work with West-End theatres to create autism friendly shows so that autistic people and their families can still share those experiences that they may otherwise fear they’re not able to do.
For more information about autism or the National Autistic Society, please visit: autism.org.uk