This week (1st-7thApril 2019) is World Autism Awareness Week.
Autism can mean so many things to so many people. It is not a one size fits all and it is important not to generalise and to educate ourselves fully about the condition so as a society we can have a better understanding and appreciation of autism.
Autism is a life long learning disability that can affect how people perceive the world and how they interact with others. There are currently around 700,000 people in the UK with autism and the condition can manifest itself in different ways and to varying degrees. People with autism can struggle to communicate and understand people. This can make it hard for them to read social cues and interpret both verbal and non-verbal signs as they may have a very literal understanding and struggle to manage the expectations of conversation. This can make it tough for people with autism to build a rapport with new people and to develop relationships.
People with autism may be more sensitive to sound and other senses and this can cause them anxiety in certain situations. It may be that they have repetitive patterns of behaviour and find it hard to adapt to change. Some people with autism have very focused interests and the pursuit of these interests can be fundamental to their happiness. As the National Autistic Society states, everyone can learn and develop and autism is not an illness. Autism is a fundamental aspect of people’s identity and with the right kind of support people with autism can lead fulfilling lives. The National Autistic Society offer a lot of guidance and they have been instrumental in the creation and development of The Autism Act ; the only act that is dedicated to improving support and services for one disability.
This year marks the ten year anniversary of the Autism Act and The National Autistic Society are working with the All Parliamentary Group on Autism to review the implementation of the act. A crucial part of this is for the National Autistic Society to find out what has worked well so far, what has not worked and what needs to change. If you have an experience or an opinion that you would like to voice then you have until this Sunday 7thApril to take part in their survey: https://www.smartsurvey.co.uk/s/OB5OB/
At Suffolk Carers Matter we support several people who have children with autism.
Here are some of their experiences….
L: Eight years ago my son was diagnosed with Autism Spectrum Disorder. I had no prior knowledge or experience of this condition…..As his Mum I felt useless. For a long time I just wanted someone to say it wasn’t true….eventually feelings did subside, became more manageable and I came to terms and learnt to accept them. My son is now ten years old and still completely non-verbal…He is amazing! An absolute joy and pleasure to be around and over the years has taught me so many skills and to be a better person. Everyday life can be a real challenge with long days and even longer nights due to lack of sleep, another issue which can go alongside his condition. There are endless phonecalls to make, paperwork, appointments, assessments and care plans to be made…. The small steps and progress in his development, knowing the obstacles and understanding the work and effort it has taken him to achieve these are massive and make everything worthwhile. There is no cure but support and understanding can really improve quality of life.’
F’s son was diagnosed with autism in 2017 at the age of 3 and a half. She said ‘The most helpful responses I had to the diagnosis acknowledged that I was upset without commenting on him, ‘sorry to hear you’re feeling sad,’ ‘you’re going to need time to find a new normal’ etc. Practically, I was also always happy to hear about other children with a similar diagnosis, as it made me feel less isolated. Offers of expert contacts is really welcome too.’
F says she always tells people ahead of meeting that her son has autism ‘and I really appreciate it when they act un-phased.’ F goes on to say ‘If the Parent Carer tells you about their child’s diagnosis and you know someone with the same condition do mention it, as it will immediately make the Parent Carer feel more comfortable to know you are familiar with their child’s issues.’
F went on to share the following:
‘One thing I find really hard about my 4 year old son’s autism is the emotional volatility. He feels every frustration, or everything that isn’t precisely to his liking, so keenly that it’s almost impossible for him to go anywhere or do anything without dissolving into tears or rage at some point. It puts a strain on our family life, partly because that short fuse is horribly contagious, and partly because it feels like we aren’t able to just enjoy an outing – or even dinner – together without these flares of misery, and that makes me sad. He is getting better, though, and we are getting better too. I really want to end on a positive because I feel so strongly that we parents of these special children owe it to them to believe they can make progress. I think that’s the least we can do.’
Here at Suffolk Carers Matter we also receive several referrals for people whose adult children or spouses/partners have recently been diagnosed with autism. Whilst this can be a relief in some ways to explain and understand certain behaviours, it can lead to a lot of change and upheaval of emotions later in life. This is something that our counselling service has helped a lot with in several cases.
If you can relate to any of the above, are caring for someone with autism and would like some help and support please don’t hesitate to call us on 01284 333035 or talk to us via our LiveChat facility.