Supporting churches to include people with Autism and Learning Disabilties

Posts tagged ‘#Aspergers’

ASC? What’s that?

This is the most common question I have been asked since setting up my own freelance specialist support service. At first I thought “Oh no! Maybe I should have called myself something else so people won’t be confused?”

But actually, that question has led me to have some great conversations with people.  I have been able to tell them about Autism Spectrum CONDITION, (ASC) and why I have chosen to use this definition over the word ‘disorder’ or even ‘disability’.  I was even blessed enough to then outline my service and my vision for supporting, training, advising and making resources for all kinds of organisations and individuals so that they can include and support someone on the autism spectrum in what they do.

So…here I am. Newbie business woman as from Jan 1st 2014! And here’s my logo!

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I had to think of a name to work under and choosing one is not as easy as you think.  However, I do go on the premise that simplicity is best (and the ‘Ronseal’ principle of it does what it says on the tin!) and chose REACHOUT ASC as my name.  That’s what I want to do…reach out and help people understand ASC.  And this will definitely include churches, so if you want training, help and support for your church do get in touch. There will be links, events and resources that I will post on my blog in the future so do look out for them.

Starting up on your own is a bit like stepping off a cliff and hoping someone might catch you…

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As a person who has faith in Jesus Christ, I am expecting Him to catch me and take me where he leads.  Now that is scary but gives me a real positive outlook on everything (including my car dying in the first week of business!) and tons of hope for the future. I know he will be there when things go wrong, work is slow to come in, I get lots of work and need wisdom to make decisions, say the right advice and support children and adults at very vulnerable and difficult times.  I day this because all through my Christian life (and even before this – when I didn’t realise at the time) Jesus has been faithful.  I have grown so much as a person through the most difficult times and will always trust him because he has proved so many times that he is who he says he is.

And for those of you who read A Bigger Vision wall http://wp.me/p2MVJu-a4 and Running away – God and Elijah  http://wp.me/p2MVJu-bY posts thank you for your prayers, they have helped me take this leap and realise I wasn’t running away from but to something. I really appreciate strangers who care enough to pray. God Bless you.

Good News Group News

For those who want to know – Good News Group starts back up again this Wednesday (15th January).  See main page for times and structure. https://includedbygrace.wordpress.com/the-good-news-group-2/

This term we are learning about Saul’s conversion and his life as Paul, preacher to the gentiles. We are learning how it wasn’t always easy, sometimes dangerous, often turned out very differently to what he expected and sometimes amazing.

Through all this Paul is a person we can look up to. He was humble, fiercely passionate about the gospel, always prayed for others and never gave up, no matter what happened.

I’m looking forward to learning about him too!

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Additional Needs Ministry – Local Needs

As I attempt to add my advice to the other good advice that is out there – I was thinking about how ministry for people with additional needs may be quite diverse. It is a good idea, even once you have collected lots of good ideas from other places to then stop and reflect on the needs in your locality.
If you have spent time praying and getting your leadership on board there is further research you can do.

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What are the needs in your local community?

Who comes to your church? If anyone comes with additional needs talk to them, get them on your team and ask them what works and what does not in your church.

Are there families with children with SEN? Do you have a special school near by? Are there support groups, or other services in your area?

Are there homes for adults with learning disabilities? Is there a day centre? Try contacting the local social services and ask them what services they provide.  If you can make contact with someone and meet them for coffee, outlining what you are doing, it can be a very useful contact indeed.  Our Good News Group has been advertised on social and other services websites.

Do the people who come to your church know anyone with additional needs?  Families? Neighbours? Friends?

Do you have anyone who works with or is knowledgeable about any kind of additional need? (Especially if the person has that need. They can be invloved in awareness training and equiping others to meet needs effectively).

This is a good time to get all your church involved.  You could do a talk (or get your pastor / vicar to do it!). I once did one to recruit new team members and used a great DVD clip from Prospects where adults with learning disabilities talked about their faith.  You could use a parable, for example the Good Samaritan. Be creative and be visual to help people see as well as hear what you are talking about.

I would ask the congregation to do the detective work with me.  All of them could look something up on the internet, speak to their family and neighbours or investigate where they live. Do a survey of your local needs and provision together and collate this so that you can see more clearly what there is and who there is.

When you have all this information collated you are then ready for the next step…

…deciding what your church should do first.  Brainstorm and prioritse…

Then pray.   And see what the Lord will guide you to do.

Hope this helps someone out there. Do let me know how you’re getting on or if you have done this kind of activity before – how useful was it?

Building a Team

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Pentecost by Chinese artist He Qi

Before anything is begun we pray.  Then, guided by God we act.

I love the way Jesus showed himself as the risen Lord, gave his disciples a commission and then told them to wait until the Holy Spirit came to give them power to do what he had asked them to.

Our Good News Group was started by people who prayed, waited and then acted.  I wan’t part of that but I am eternally greatful to those who set up our group.  (If you are reading this – thank you x)  I joined it as a helper about a year later and two years ago joined the leadership team.  I am the one who writes this blog but I need to stress that very few ministries work with people acting alone.  It is easy to become overwhelmed and burnt out unless we work as God said…The body of Christ…each part doing its bit.

Each church has leaders, usually a leadership team. It is the vicar, minister, pastor and the PCC, Elders (or whatever they are called in your church) who need to support any drive towards a more inclusive church.

However, before you go to speak to your leaders it is a good idea to do some homework.  don’t just go with a long list of complaints and problems stating why church is impossible for your child with additional needs, or that people with additional needs generally don’t come to your church.  Church leaders are often bombarded with problems, complaints and criticism and everyone looks to them for all the answers.   You are much more likely to get support by setting out a general overview of the situation nationally or locally (for example how many people with additional needs live in your area. Try local council website for statistics.  The government website will have national statisitcs.) This will identify the need in context rather than being specifically critical of your church.  Many Church of England Diocese (and other church organisations that you may belong to)  have papers and reports on their website such as  the ‘Opening the Doors Report’ on

http://www.blackburn.anglican.org/more_info.asp?current_id=293

If you can then set out what other churches are doing and bring articles and examples to their attention, it will help church leaders see that it can be done and where they can ask for support. I have mentioned www.prospects.org.uk and www.liveability.org.uk before.  I will also recommend  www.throughtheroof.org and www.careforthefamily.org.uk/additonalneeds/   –  if you have anything going on nearby, go and visit them if you can.   Come with testimonies, reports and examples of how people and families with addtional needs CAN be included in any church and are an important part of the body of Christ.

Draw up a list of what you have seen and what you think could be done at your church.  Be reasonable and realistic at first, but be open to a God who can do much more than we can ask or imagine!

Keep praying. I will make no apology for repeating this a lot…nothing worthwhile or eternal will happen without our complete reliance on God.

It may be that you are not the person who will take on and move the ministry forward.  The Lord may be using you as the catalyst and others will come on board with their gifts.  Pray for a team of godly and willing people who can work together to do this work.

Preparing something before you talk to your leaders, (it will be very difficult to do anything without their support) will help them see the bigger picture and grasp your vision.  Don’t give up and know that the Holy Spirit will work, speak and act thorugh all who are willing to wait and listen.

Let me know how you get on – or if you have done this already, what advice have you got to share?

Autism Awareness Month – Two Aspects of Autism?

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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….

Show not Tell – visual Communication Part 1

If you were driving - what would your response to this be?

Many of the advice and strategies for people with autism and Asperger’s Syndrome seem to advocate using visual pictures or symbols to support communication.  This can range from PECS (a picture communication system for non-verbal or emerging verbal people) to using visual pictures and symbols in social stories, schedules and daily living for even very high functioning people.

But why?  It began with Temple Grandin (Thinking in Pictures and other Reports from my life with Autism 1995) and recent research studies show that the brain in many people with ASD can recognise and process visual information easier and more successfully than verbal information.  It can be easier to retain the information in the memory if it is visual and enable the person to then process what they are going to do about the information more successfully. If you want to know more about this http://www.cec.sped.org/AM/Template.cfm?Section=Autism_Asperger_s_Syndrome&template=/CM/ContentDisplay.cfm&ContentID=7764 is a great article. There are many other sources of research but this is not the place to get into such heavy debate!

An example in everyday life is road signs.  They are pictures and once we learn what they mean we can receive the information, process it and respond as we need to even when travelling at 70 miles an hour.  It would be very annoying to have a passenger who constantly yelled instructions at you during every journey you took (maybe some of you have someone that does that anyway?!) I can’t even stand a SATNAV for this reason! I can find my way around by looking at a map and having a mental picture on which to base my actions when driving.  It helps me know what to look out for and what the road names are that I need to follow.  I am a visual learner along with many of the people with ASD that I meet.  (caution: you do need to remember that everyone with ASD is different and some may not be visual learners and will therefore need a different approach, finding what works for individuals is really important.)  However, in saying this it seems that there is much evidence in practice that using visual strategies helps those who need it and does not do any harm for those who don’t. (My son loved the visual timetable set up in his class at school for another child. He said it really helped him too!)

Widgit did a great study supporting the use of visual symbols in schools in Warwickshire. The symbols Inclusion Project; you can read it here: http://www.symbolsinclusionproject.org/evidence/index.htm  and you can follow them on twitter @Widgit_Software .  Other sources of symbols are available too…some people use photographs they take on a digital camera, clipart some find free resources online.  (www.do2learn.com have some too).

Interestingly I was speaking with a speech and language therapist who says they use visual communication strategies including PECS with stroke victims who lose the ability to speak. It helps them relearn to communicate by stimulating their brain visually to process language again.

This is just an introduction and part 1 – I will spend the next few post exploring this further and I will look at how visual communication can help in the home, community, schools and churches.

Effective communication is efficient communication.

Thought this was worth another look!

To communicate effectively with an autistic person – don’t use too many words.

I am a great waffler! In fact, I could get a medal waffling for my country.   I love words, explaining things and even (now don’t be shocked) talking about the weather. I have been known to be a bit nosey, occasionally gossip (sorry) and even nag. But guess what? Effective communication is efficient communication.

1. Say what you mean.  Mean what you say.

2. Keep it short and simple.

3. Say what you want, not what you don’t want

4. Don’t repeat things too quickly.

5. Use the person’s name first.

6. Leave clear pauses for the person to reply.

7. Be relaxed and stop rushing, we always seem to be in a rush don’t we?

I tried this out on my own kids when they were younger. You might recognise the scenario… It’s 7.55am. Everyone needs to be out of the house by 8.00am. Oldest child has yet to emerge from their room, youngest is still eating their toast. Mum goes into full nagging and panic mode,
“Have you made your lunch? Where’s your shoes? Have you got everything in your bag? Don’t forget to brush your teeth! And you’ll need your coat, it’s raining. Come on, you’ve only got 5 minutes. I said COME ON, GET A MOVE ON.”
Mum then runs to the bottom of the stairs,
“Oi, you’d better be out of bed, you’ve got 5 minutes………” (and repeats the entire tirade!

I hated getting to work stressed and minus something really important (usually my lunch) because I’d been nagging the kids so much, we’d barely got out of the house in one piece and in time.

The above points needed to be put in practice. They worked for the children I worked with so I tried them out on my own.

Now the morning went like this:
It’s 7.55am. Everyone needs to be out of the house by 8.00am. Oldest child has yet to emerge from their room, youngest is still eating their toast. Mum goes into calm and effective communication mode.

“Right, child eating toast. Finish your toast, then shoes, bag, teeth. Go!”

Mum goes to top of stairs, knocks on door of older child and says,

“Morning older child. In 5 minutes I’ll see you downstairs with your bag, shoes on and teeth clean.”

Mum retires to kitchen, picks up her lunch and finishes off her coffee.
At 8am the whole family is ready and out!

And believe it or not, with a bit of practice, this really worked.

What does effective communication look like in your house?

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