GENERAL ELECTION CAMPAIGN 2017
Telling your story
Organising your coffee morning
Discussion topics
Until everyone understands
CONTENTS
Foreword from Mark Lever
03
What can my MP do anyway?
04
How to hold a candidate coffee morning
06
Guides:
02
08
10
15
Guide 1:
Telling your
story
Guide 2:
Discussion
topics
Guide 3:
Organising your
coffee morning
Support: social story template
17
What you can ask your candidate to do
19
I’ve met my candidate. Now what?
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www.autism.org.uk/ImOne
I’m One General Election Campaign 2017
FOREWORD by
Mark Lever
GENERAL ELECTION CAMPAIGN 2017
When The National Autistic Society has
successfully campaigned for changes to
benefit people on the autism spectrum1
both locally and nationally, we’ve usually
needed the support of politicians.
In 2015, we asked our campaigners to speak
to their local General Election candidates faceto-face. Today, the candidates who meet us
tell me they support our campaigns because of
the stories they’ve heard from people like you.
20 minutes or so. You can talk about whatever
you like: your experiences of accessing support
in school or when looking for work, attitudes
towards autism in the community or simply how
autism affects you and your family.
Candidates care about issues because they know
they’re important to the people they represent. In
the weeks before the election on 8 June, all sorts
of people will contact candidates to ask them
to support their causes. In order to make sure
autism is one of their priorities, we need to cut
through the noise once more and take the time
to sit down with local candidates face to face, for
a conversation that they will remember after the
election has ended.
Oh, and you don’t have to meet in the morning
or drink coffee! You decide what works best for
you. Thank you for taking the time to be part of
our campaign and good luck with your candidate
coffee morning.
That’s why we’re again asking you to hold a
candidate coffee morning. This pack will tell you
exactly how to do this, and staff at The National
Autistic Society will also support you. The premise
is simple. Arrange to meet your candidate
alongside a small group of family or friends for
Mark Lever, Chief Executive
The National Autistic Society
In this pack we use the term ‘autism’ to refer to all conditions on the autism spectrum, including Asperger syndrome.
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Candidate coffee morning toolkit
www.autism.org.uk/ImOne
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WHAT CAN MY
MP DO ANYWAY?
Your Member of Parliament (MP), whatever
their political party, should take forward their
constituents’ issues.
They may not be able to solve all of your problems, and from
time to time there will be disagreement over what the right
solutions are.
Nevertheless as these examples show, an MP can be an excellent
campaign ally, and if they are on your side they can be instrumental
in helping us to achieve positive change for people affected by
autism.
Case Study: EDUCATION
Victoria tells us about the first time she met
her MP.
How did you feel about it?
I’d never met an MP before and I was nervous.
As he was a Minister it took a while to get his
attention, but persistence proved to be the key.
Did you have to prepare?
I wrote a short note with details on the issues I
wanted to raise and the points I wanted my MP
to act on after we had met. I took this note with
me so I could refer back to it in order to keep the
meeting on track and focused.
How did you get over your nerves?
For moral support but also to add impact, I
brought a very good friend of mine with me to
the meeting. Her family life is very similar to mine
and together we were able to emphasise both
the significance of what we were saying and how
common our experiences are for many families.
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www.autism.org.uk/ImOne
Was your MP less intimidating than you
imagined?
It turns out that my MP has had lots of other
constituents asking for his help and has become
very sympathetic. I was amazed by his interest
and knowledge, we had a good chat about the
problems we face and he listened well.
And the outcome?
My MP agreed to coordinate a meeting of
parents and families, health care and education
professionals. It became an “autism summit” with
representatives from the West Sussex County
Council and the NHS. I wouldn’t have been able
to bring all of those key individuals together
without my MP’s influence.
I’m One General Election Campaign 2017
I was amazed by
his interest and
knowledge...
he listened well
Case study:
EMPLOYMENT
Case study:
IN PARLIAMENT
Ray worked alongside his MP to host an
event for local businesses.
The Children and Families Act was passed last
year, reforming the way children with autism
are supported through the Special Educational
Needs system in England.
As an adult with autism, Ray had experienced
difficulties within employment due to the lack
of understanding of autism among employers.
As part of our charity’s Undiscovered Workforce
campaign, Ray wanted to raise awareness
among employers and local politicians.
Ray met with his MP and as a result of hearing
his story, the MP was keen to support him.
They decided to host an employment event
with The National Autistic Society and invited
local employers and other organisations such as
JobCentre Plus.
Ray kept in contact with his MP during the
planning stages of the event. His MP put out
a press release and helped to publicise the
event to her own local contacts. She also raised
awareness of issues for people with autism
in Parliament and spoke alongside Ray at the
event.
The local paper then featured the event
and included a picture of Ray and his MP
speaking. The MP also spoke about the event
in Parliament, which helped to raise awareness
amongst other MPs.
Candidate coffee morning toolkit
Working with other charities, The National Autistic
Society campaigned to make several changes to
the Government’s proposals, which we felt didn’t
go far enough for families. In order to do that, we
needed MPs who would be willing to speak up for
those families.
One MP contacted us because he wanted to help
our campaign. Why did he want to help? Because
parents in his constituency had explained to him
the many difficulties they had experienced with
trying to get health and care support for their
children. Driven by his constituents’ concerns, he
worked with us to challenge the Government’s
plans, specifically to make it easier for parents
to complain if they didn’t get the support they
needed.
As a result of this MP’s interventions in
Parliament, the Government agreed to review
the complaints process. This would not have
happened if those parents hadn’t told their stories
to their MP and inspired him to take action.
www.autism.org.uk/ImOne
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HOW TO HOLD A
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Your step-by-step guide to meeting your candidates.
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SEND AN INVITATION
TIME AND LOCATION
Go to www.autism.org.uk/ImOne to send a
request to your candidates. We recommend
that you try to meet all the candidates who are
standing for election in your area, but it’s up to
you to decide who you’d like to contact.
Agree a time and location. It’s important that
attendees feel comfortable, so pick a location
that everyone is familiar with and won’t be too
busy or noisy so you can hear the discussion.
It could be at a coffee shop, in your living
room, at a school or other community facility
which you have access to.
You also need to tell your friends and family if
you would like them to be involved. It’s important
that candidates see that autism affects others in
the community. We recommend you bring along
at least two other people to contribute to the
discussion. If you’d like to make it a bigger event
or open to the public then get in touch with the
NAS campaigns team at [email protected].
If you don’t know anyone in your constituency
who would be interested in taking part then
we can help to link you up with other local
supporters.
It’s up to you and the candidate to agree how
long you have to talk. We recommend 20-30
minutes. Often our meetings with politicians in
Parliament last no more than 20 minutes and it’s
surprising how much you can cover in this time.
Our discussion guide gives you an idea of how to
structure a 20-30 minute meeting.
Most candidates won’t have any office support so
don’t be surprised if it takes a while to hear back
from them. If you still haven’t heard anything after
two weeks then contact us and we can help you
follow up.
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I’m One General Election Campaign 2017
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4
PREPARE
TELL US HOW IT WENT!
Do a tiny bit of preparation, but you don’t need
to swot up on policy or the latest party political
announcement. The candidate coffee morning
is about you, what it’s like to live with autism in
your constituency and how your MP can help.
Tell us how it goes. We want to know what
your candidate agreed to do if elected.
To manage your time and ensure everyone has a
chance to participate, it is important to decide in
advance what your group wants to talk about.
In this document you’ll find a series of guides to
help you do this. Firstly, complete our story guide
on page 8. You can then use our issues guide on
page 10 and the structure guide on page 15 to
decide what you want to focus the discussion on.
GUIDE 1: Telling your story
P08
GUIDE 2: Issues guide
P10
GUIDE 3: Structuring your meeting
P15
And remember… there’s nothing to fear!
The coffee morning is a relaxed chat with
someone who is interested in knowing what you
think about your area. It’s not important if you’ve
never met politicians, don’t know policy or what
the solutions should be. It’s about your story and
what you think is good and bad in the area.
We’re here for you if you have questions before or
after the coffee morning.
Get in touch at [email protected] or call
020 7923 5799.
You will also find a candidate sign-up sheet
on page 19 which includes suggestions for
requests you can make to your candidate at the
meeting. It’s important to have at least one thing
to ask them to do, so discuss with your group
beforehand what you’d like that to be.
Candidate coffee morning toolkit
www.autism.org.uk/ImOne
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GUIDE 1
TELLING YOUR STORY
This guide will help you think about how you
tell your story. Ahead of your candidate coffee
morning, ask each person in the group to give
brief answers to some of the questions.
You don’t need to answer every question or
say everything you write down in the meeting
itself. You should use it as a prompt for your
key points. You can also give your completed
guide to the candidate if you run out of time and
haven’t mentioned everything you wanted to or
if there are members of your group who prefer to
communicate through writing.
Describe one positive aspect of living with autism.
For example: “I see the world differently.”
What are your hopes or fears for the future?
For example: “I hope people will start to understand what autism is about and not be frightened
by it or worried being around someone with autism.”
For example: “Once my child outlives us, what will happen to him? Who will look out for him, as
he will always be vulnerable? Who will have him at Christmas, and check he isn’t being ripped off
or hurt or intimidated or worse? This is my biggest fear and worry and keeps me awake at night –
and he’s only ten.”
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I’m One General Election Campaign 2017
GUIDE 1
TELLING YOUR STORY
How would you describe autism to someone who doesn’t know what it is?
How does it affect you?
For example: “Autism can feel like arriving in a foreign country where you don’t understand the
language or know what the local customs are.”
Describe the first time you realised that living with autism meant you would
have to fight harder than other people to get the same things they do?
For example: “I would like to have friends but I don’t know how.”
For example: “I was contacted at least every single week to go and collect my child from school.”
Describe one of the challenges of not getting the right support locally,
or the positive difference the right support can make.
For example: “My support worker taught me the bus route from home to college. I learnt how to
do the route on my own. Without it, I wouldn’t be as independent as I am now or feel confident to
go around town.”
For example: “I can’t get my son into respite services or outreach. He becomes very aggressive,
very violent, because he has been let down so much.”
Candidate coffee morning toolkit
www.autism.org.uk/ImOne
09
GUIDE 2
DISCUSSION TOPICS
After using our story guide to discuss your
experiences, use the information on this sheet
to make your case about some of the key
issues people with autism face.
Using the evidence below will show your candidates that your
experiences are part of a broader picture across the UK.
Remember that you and your experiences are at the centre of this
campaign, so you can feel comfortable relating the issues below to
things you’ve faced in your life.
Issue: EMPLOYMENT
Even though unemployment is falling, it is still
much higher among people with autism than
for the rest of the population.
Many issues contribute to the employment
barriers that people with autism face, such
as stigma from employers and inaccessible
workplaces. Currently the UK Government’s backto-work schemes do not address the specific
and long-term needs that people with autism
often require in order to enter and remain in the
workplace.
Across the UK:
• Only 16% of people on the autism spectrum
are in full-time work.
• 77% of autistic people on out-of-work benefits
want to work.
• 80% of non-disabled people are in work
compared to 46% of disabled people and 32%
of people on the autism spectrum.
Suggested Questions
What would your party do to
make sure people with autism
who find it hard to get a job
are supported to find a job
that’s right for them?
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www.autism.org.uk/ImOne
If you were elected, how could
we work together to persuade
local employers to be more
autism-friendly?
I’m One General Election Campaign 2017
GUIDE 2
DISCUSSION TOPICS
Issue: EDUCATION
With the right support, children with autism can achieve great
things at school and gain skills that allow them to thrive.
Yet far too many children with autism are not getting the support
they need to get the education that they deserve, and too many
parents face a daily battle to get help for their child.
In England:
• 74% of parents who responded to a National
Autistic Society survey say it has not been
easy to get the educational support their child
needs.
• 69% of parents said that their child had waited
more than a year for support after concerns
were first raised and 16% had waited more
than three years.
• Autistic pupils are three times more likely
to be excluded than those children without
special educational needs.
In Wales:
• Only two in five parents responding to a
National Autistic Society survey told us that
their child was receiving all the help specified
in their statement.
• Of parents who thought that their child needed
speech and language therapy, only 36% felt
they received enough support in this area.
• 44% of parents told us that services or support
in education on children’s social care said that
support had got worse over the last five years.
In Scotland:
• About half of parents (46%) responding to an
NAS survey said their child is not in the kind of
school that would best support them.
• Over half of parents in an NAS survey said
that a lack of appropriate placements limited
choice, especially at secondary level.
• Two-thirds of parents responding said that a
delay in getting support had a negative effect
on their child’s behaviour.
In Northern Ireland:
• More than half of parents told us in a survey
that they had waited more than a year for their
child to get support in school.
• Almost two thirds of those who were
dissatisfied with their child’s education would
like their child educated in an autism specific
unit attached to a mainstream, or an autism
specific, school.
• There are only a small number of autism units
and no autism specific schools in Northern
Ireland.
Suggested Questions
How would you help to make sure all
children with autism in our constituency
receive the right educational
opportunities for them, for example
access to the right type of school?
Candidate coffee morning toolkit
What would your party do to improve
understanding of autism throughout the
education system, for example among
teachers?
www.autism.org.uk/ImOne
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GUIDE 2
DISCUSSION TOPICS
Issue: SOCIAL CARE AND HEALTH
Too many people with autism struggle to get a diagnosis. And even
when they get one, they are often overlooked when it comes to
getting the support they need.
Adults who had a diagnosis in childhood report that there is a real
difficulty in transferring from children’s services to support in adulthood.
A squeeze on social care budgets combined with a lack of appropriate
support for adults on the autism spectrum means that accessing the
right help at the right time is a challenge.
In England:
In Scotland:
The Autism Act has started the process of
improving support for adults with autism – but its
implementation has been slow and patchy across
the country. NAS surveys show:
The Scottish Strategy for Autism was launched in
2011 by the Scottish Government. Alongside this,
£12 million was invested into supporting delivery.
• Autistic adults tell us they have to wait two
years on average for a diagnosis after raising
concerns, despite The National Institute
for Health and Care Excellence (NICE)
recommending a maximum three-month wait.
• 70% of respondents told us they were not
getting all of the help they needed from social
services.
The strategy is important in tackling the following
key challenges identified by our charity’s surveys
in Scotland:
• 33% said it had taken three years or more to
get a diagnosis after first raising concerns.
• 27% said they had been misdiagnosed.
• Two thirds felt they weren’t getting enough
support to meet their needs.
• 65% of autistic adults need prompting to
wash, dress or prepare a meal.
In Wales:
In Northern Ireland:
Despite leading the way in being the first of
the four nations to develop an autism strategy,
people in Wales tell us that they feel autism is no
longer a priority for the Welsh Government and
that new duties on local authorities and health
boards should be introduced to meet the needs
of children and adults with autism in Wales. NAS
surveys show:
The autism strategy covers the period from 2013
– 2020 and was a key requirement of the Autism
Act (Northern Ireland) 2011. It is the first crossdepartmental strategy of its kind in Northern
Ireland. Yet our research for our Broken Promises
report found:
• Half of adults on the spectrum said they didn’t
get enough support to meet their needs.
• Half said that there was a lack of
understanding of autism among professionals.
• With more support, 60% said their mental
health would improve.
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• Only 22% of respondents were satisfied with
the support they received after diagnosis.
• Nearly half of adults told us they wanted
help to live more independently but only 4%
received this support.
• 73% of parents/carers told us they felt
isolated.
I’m One General Election Campaign 2017
GUIDE 2
DISCUSSION TOPICS
Suggested Questions
How will your party work to tackle
waiting times for diagnosis?
What will your party do
to ensure that the care
system is properly funded?
If you live in England:
If you live in Scotland:
How would you work to ensure the
Autism Act is implemented locally
so that people with autism can get
the help they need?
How will your party make
sure that people with autism
get the support they need?
If you live in Wales:
Would you support an
autism act for Wales?
If you live in Northern Ireland:
How would you ensure that the Autism Strategy
and Action Plan in Northern Ireland are properly
implemented to ensure that children and adults with
autism get the support that they desperately need?
Issue: BENEFITS
Benefits are a lifeline for many people with
autism. Autism makes life more expensive and
poor employment support means that many
people with autism are forced to rely on outof-work benefits. 65% of adults with autism
rely on their families for financial support.
Autism is a complex and often ‘hidden’ disability.
The tick-box nature of benefits assessments,
coupled with a poor understanding of autism
among assessors, leads to the needs of people
with autism often being overlooked.
Candidate coffee morning toolkit
Suggested Question
How would your
party make sure that
benefits reach those
whose needs are less
visible and harder to
understand?
www.autism.org.uk/ImOne
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GUIDE 2
DISCUSSION TOPICS
Issue: AUTISM AWARENESS
Although more than 1 in 100 people have
autism, false and often negative perceptions
about the condition are commonplace.
Awareness of the condition to a person with
autism can act in the same way as a ramp would
to a person in a wheelchair – and a lack of
understanding can make the community a very
inaccessible place.
Across the UK, responding to an NAS survey:
• 99.5% of people in the UK have heard of
autism, but only 16% of autistic people and
their families think the public understand
autism in a meaningful way.
• 79% of autistic people and 70% of families feel
socially isolated.
• 28% of autistic people have been asked to
leave a public space because of behaviour
associated with their autism.
Suggested Question
How could we work together to improve access
and awareness of autism across our community?
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www.autism.org.uk/ImOne
I’m One General Election Campaign 2017
GUIDE 3
G
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ORGANISING
In your group, you will probably have a lot
to say. As time will be limited, it’s important
to agree in advance with the other coffee
morning participants what the key issues are
and what requests you want to focus on. This
will ensure none of you will leave the meeting
disappointed.
This guide will help you bring together the information from
your story and issue guides into a simple agenda.
You can also mark down who is going to say what, so you each
have a chance to input.
What is autism?
Agree how you are going to describe autism to your candidates. Use the prompts in the story
guide to think about how your own experiences could help them to understand.
Candidate coffee morning toolkit
www.autism.org.uk/ImOne
15
GUIDE 3
ORGANISING YOUR COFFEE MORNING
What are the main issues that are affecting or worrying you?
Between all of you, choose no more than one or two concerns that you want to talk to your
candidates about, based on the prompt questions in the story guide. You could use the issues
guide to illustrate your points with relevant statistics.
What do you want them to do as a result of the meeting?
It is important to agree to some actions at the end of the meeting. There are suggested questions
to ask in the issues guide. Our candidate sign-up sheet on page 19 also provides you with some
key asks.
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I’m One General Election Campaign 2017
SUPPORT
E
SOCIAL STORY TEMPLAT
If you are supporting an autistic person, you
may find this template helpful in preparing them
for the candidate coffee morning.
How to use this information sheet: This sheet will tell you what to
expect when you meet your political candidate.
When and where the meeting will happen
The meeting will take place at:
Insert a photo of
the meeting venue
It will start at approximately:
It will finish at approximately:
Who will be at the meeting
The following people will also be part of the
group meeting your candidate:
Insert photos of people who
will be at the meeting
Candidate coffee morning toolkit
www.autism.org.uk/ImOne
17
SUPPORT
SOCIAL STORY TEMPLATE
Your candidate
The candidate you are meeting is called:
Insert photos of the
political candidate
You can contact [email protected]
if you would like help finding a photo.
Their political party is:
Your Questions
What will happen on the day?
•
You will sit with the other members of your group and the political candidate.
•
You will take it in turns to talk about your experiences.
•
Your candidate will listen, and may ask you questions.
•
You can also ask your MP/candidate questions.
•
They may not be able to answer your questions straight away.
•
They might send you an email or a letter after the meeting answering these questions.
What I will talk about?
My experience:
My questions:
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WHAT YOU CAN ASK
YOUR CANDIDATE TO DO
Before your meeting ends, it’s important to ask your candidate
how they plan to support autism if elected to Parliament.
Once you’ve asked your candidate what they’ll do, send us their answers so we
can contact them after the election.
Use this space to write down some specific actions your candidate could take to
support autistic people and their families better, if they are elected. Ask them to tick
the ones which they are happy to do. This will help both you and us follow up with
them after the election.
Get your
candidate
to tick the
box(es) if
they are
happy to
do this
action
ASK
Would they be happy to join the All Party Parliamentary Group for Autism (APPGA)?
The APPGA is an informal cross-party group which is run by and for Members of Parliament.
Would they be happy to meet The National Autistic Society supporters if elected?
Candidate coffee morning toolkit
www.autism.org.uk/ImOne
19
.
I’VE MET MY CANDIDATE
NOW WHAT?
1
Email us at [email protected] or call 020 7923 5799 to tell us what
your candidate agreed to do if elected.
This will be what they ticked on the candidate sign-up sheet or could be
other things that came out of your discussion.
2
If you’re on Twitter, then tell us and others about your candidate coffee
morning. You can tweet at your candidate if you know their twitter
handle and include us by using @autism and #ImOne.
3
After the election, we’ll be in touch about whether you’d like to work
with us to further build your relationship with your MP.
We are the UK’s leading autism charity. Since we began over 50
years ago, we have been pioneering new ways to support people
and understand autism. We continue to learn every day from the
children and adults we support in our schools and care services.
Based on our experience, and with support from our members,
donors and volunteers, we provide life-changing information and
advice to millions of autistic people, their families and friends. And
we support professionals, politicians and the public to understand
autism better so that more autistic people of all ages can be
understood, supported and appreciated for who they are.
Until everyone understands.
The National Autistic Society
393 City Road
London EC1V 1NG
Switchboard: 020 7833 2299
Autism Helpline: 0808 800 4104
Minicom: 0845 070 4003
Email: [email protected]
Website: www.autism.org.uk
Follow us @autism #ImOne and
www.autism.org.uk/ImOne
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THAN
The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a
company limited by guarantee registered in England (No.1205298), registered office 393 City Road, London EC1V 1NG
© The National Autistic Society 2017 | 3483