With around 700,000 people on the autism spectrum in the UK – more than 1 in 100 – autism is far more common than many people think. If you include the family members and carers dealing with autism as part of daily life, the number of people affected rises to 2.8 million.
Experts now believe that the true number is much higher, with a “lost generation” of thousands missed due to low awareness and understanding of the condition. 5 times as many men than women are diagnosed, indicating an under-diagnosed female population. If you believe someone you care about may have autism, the wellbeing experts at CABA have provided this guide on the signs to look out for, following the charity’s partnership with the National Autistic Society.
What is autism?
Autism is a lifelong neurodevelopmental disability that affects how someone interacts and relates to other people, as well as how they experience the world around them. Social scenarios, including family events, school and work, can be difficult, leaving them feeling overwhelmed and anxious.
How is autism diagnosed?
Autism is a spectrum condition, meaning that, while all autistic people share certain difficulties, they will all be affected in different ways. In order for an autism diagnosis to be made, an individual will be assessed for persistent difficulties with social communication. Signs to look out for include:
· A very literal understanding of language. They may find it difficult to use, or understand, facial expressions, tone-of-voice or jokes
· Difficulty making eye contact
· Avoiding or resisting physical contact, they often want to be alone
· Not responding to their name
· Getting upset over minor changes
· Displaying extreme anxiety and phobias
· Have unusual reactions (over or under-sensitivity) to the way things sound, smell, taste, look, or feel
· Having obsessive interests
While there is no cure for autism, having the right support at the right time can make a huge difference to the lives and wellbeing of those affected. Yet, according to The National Autistic Society, 70% of autistic individuals aren’t getting the help they need from social services, with the same number saying they would feel less isolated if they had more support. But, help is available. Here’s where:
Pre-diagnosis? Help is at hand
If you have any concerns about booking an assessment for a friend or family member, pre-diagnosis support is available. Charities such as CABA provide practical and reassuring advice over the phone.
Experienced volunteers are a phone call away
There are trained volunteers out there, who are all parents themselves of a child, or adult, with autism. They know the impact autism has had on their own families, and can offer emotional support whenever you need to talk about your situation or feelings – or just when you need someone to listen without judging. Volunteers are available to speak over the phone, or using online services. The National Autistic Society has a specialist parent-to-parent service.
Join support groups
Joining a support centre can help you, and the person you care about, feel less isolated. Click here to find a network of local support groups and branches run by volunteers, most of whom have a personal connection to autism.
Schools entitle you to education rights
If you’re a parent or a carer of a pre-school or school-age child on the autistic spectrum, you are entitled to impartial, confidential information, advice and support on education rights. The National Autistic Society, for example, aims to explain education law and can help you explore your options and make informed decisions about your child’s school education. It also offers advice on specific subjects such as getting extra help in school, assessments, education plans, reviews and school transport.
Care for carers
Autistic individuals require a lot of care, love and attention, which can be exhausting. If you’re looking after someone with autism, and need help managing finances, cooking, shopping or other aspects of life, you can receive support by having a carer’s assessment. This assessment is for adult carers of individuals aged 18+ who are disabled, ill or elderly. It’s an opportunity to discuss with the local council what support or services you need. The assessment looks at how caring affects your life including, for example, physical, mental and emotional needs.
You may need a carers break, so you can look after your health and wellbeing. Regular overnight care might help you catch up on sleep.
Support groups and social clubs
Socialising is important for those living with autism, to improve their communication skills so they can build strong relationships in the future. Day centres, support groups and social clubs are a great way for autistic individuals to partake in fun activities, meet new people and make friends.
Outreach workers make life simple
Some people with autism may struggle with day-to-day activities. So, outreach workers are available to help them do the things they love, or need to do, so they can lead a normal life. This could be hobbies, going to college or visiting a doctor.
Acceptance in employment
Work gives autistic individuals a sense of routine, as well as the opportunity to develop and utilise their skills, build relationships and feel part of a team. So, it’s important they feel valued by their employer and fellow employees. Supported employment services can help those on the autistic spectrum with work.
Counselling is available
If you feel uncomfortable opening up to friends and families about things on your mind, speaking to a trained, impartial professional can be a cleansing experience. They’re experienced in talking about, and dealing with, a range of subjects, so there’s no need to feel embarrassed or ashamed. Counsellors, medical professionals and therapists are available across the UK to offer a listening ear and bespoke advice.
Having autism doesn’t mean you can’t enjoy a normal life. For inspiration that it can be done, check outMarion’s story. A single, working parent with a young, autistic child, Marion shares how the support on offer has made life easier for her whole family. To find out more, visit caba.org.uk.
Mary Jane Gunn, support manager at CABA