I am not autistic. I am not a parent of an autistic person. I am only a person who has a job and ministry in autism. It has been difficult to write this blog because I am not on the ‘inside’ but on the outside looking in.
All of us are made in God’s image. As human’s we try to contain our image of God in a mental ‘box’ so that we can say we understand him. We don’t and he is far too big and wonderful for our puny human minds to even grasp the basics of him being the creator and sustainer of the world.
He made each of us unique. That’s what I love about human beings. I am unique. Everyone else is unique….so why is our society so hell-bent on trying to make everyone the same?
People with autism, or autistic people are each unique too. There are some general principles that allow us to define them as being autistic and these are generally assumed to be a difficulty with social communication and understanding, a brain that processes information and experiences in a non-typical and sometimes rigid way and often a difficulty in processing sensory stimuli which can impact on the person’s ability to cope with people, places and experiences.
There are some great websites and blogs that give information about autism – www.nas.org.uk for example. Many parents of children and many adults blog about what it is like to have autism. There are many you can follow. I found some I like via twitter.
Two Aspects of Autism?
There seems to be a distinction between high-functioning people with autism and those with additional learning disabilities. Some high functioning people find their niche in society, get married, have partners, have children, have jobs (or not), friends and develop their own strategies and coping mechanisms for adapting to social and other demands that they may find difficult. There may still be many difficulties every single day that others do not see or know about which can cause high levels of stress. And for that there needs to be support and understanding. I have learned much from people who can explain what having autism is like for them.
Some of the people I work with in church are autistic with additional learning disabilities. Some are non-verbal, some have severe learning disabilities. This is the disability that makes them be identified as ‘vulnerable’ in terms of being unable to live independently and needing 24 hour care.
Do we make a distinction between high functioning and learning disabled autistic people?
Certainly not in terms of their value and worth as people…and in the fact that they each have a genuine condition that causes many ‘hidden’ difficulties.
FIRSTLY – With the right support and environment people who are high functioning can tell us what we need to know. They can be included in leadership and training others. A great person to listen to is the lovely Ann Memmott. http://annmemmott.org.uk She is doing fantastic work with the Church of England to develop churches that are autism aware. However, even high functioning people need advocates and help in daily living too, according to the National Autistic Society. This can cause a real difficulty in that we can assume that high functioning people are coping when they are not.
SECONDLY – Listening to non-verbal and severe learning disabled people with autism can be more tricky. They need others to speak up for them. As I read and listen to parents, carers, families….one of the main things I hear is that they want their charge to be recognised, understood and given opportunity to thrive. They want services and resources to enable this to happen. It is a struggle and fight on so many levels and the person they care for cannot speak up for themselves. The difficulties associated with coping with communicating, everyday life, change in routine, demands and sensory overload can cause meltdowns, challenging behaviours and great distress…on a daily basis. And yet, there are also moments of hope, joy and laughter. It is exhausting, stressful and can tear families apart. It lasts a life time. People with this level of need will require care from others all their lives and may have very little independence.
It’s a big task but we can work together
There are many people trying to explain, educate, enable and resource whoever will listen about autism. No one person can take on this task alone. It is wonderful that people join together in campaigns like Autism Awareness Week to work together. Let’s keep on going every day, not just for one month. Let each person be who they are. God has made them that way. Let’s work together to make God’s family the most inclusive family on earth (and in heaven!!)
My next post will be a call to churches to see how they can welcome and include people with autism and other additional needs … and a giveaway resource to help them get started….