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A branch of the National Autistic Society

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NAS Avon Branch

A branch of the National Autistic Society

Research: Consultations and Surveys

As part of our ongoing public understanding campaign, Too Much Information, we’re gathering real stories from autistic people, their families and friends. Sharing these stories (in the media, on social media and in newsletters) helps us to show people the reality of life on the autism spectrum and improve public understanding of autism.

 

This year, we want to share examples of how family, friends, colleagues – or even strangers – can help to make life a little easier for autistic people by making small changes to the way they behave.  For instance, a cashier at a shop recognising that a customer is feeling overwhelmed and giving them time and space.

 

If you, or someone you know, can tell us about your experiences of people being understanding or offering support in everyday situations, we’d love to hear from you.

  • Perhaps someone in a shop showed kindness and consideration when things were getting overwhelming in the queue?

  • Maybe a friend helped prepare for a day out by sending you the information you needed in advance, and keeping to plan?

  • Or, could it be that a colleague changed their way of communicating with you to make it easier for you to process what they were saying?

 

If you’d like to tell us about your experiences, please email tmi@nas.org.uk.

 

Please include:

  • Your full name

  • The way you’d like to be contacted (email or phone), and phone number if the latter

  • Your age

  • Where you live (i.e. your town or city)

  • Whether you’re autistic and how you describe your autism

  • Whether you’d be happy to be filmed or photographed, if required

  • Whether you’re happy to be in the media (a newspaper, TV or radio)

  • A short summary of your story of public understanding or support (100-200 words)

 

We look forward to hearing from you. Best wishes, The NAS Campaigns Team

Children living in mental hospitals should get help to get home. Always.

 

More than half of parents with children in mental health hospitals do not feel their child’s mental health has improved while in care. Twenty four percent of parents of children (including autistic children) who are sent to mental health hospitals think their child’s mental health has deteriorated a lot while in care.

 

We uncovered these shocking results through research carried out in partnership with mental health charity YoungMinds. This situation needs to change, urgently. That’s why this week, together with YoungMinds, we’ve launched the Always campaign. We are calling on the Government to set out strong, enforceable rights to protect children in mental health hospitals, and their families, when they need it most. The campaign calls for the NHS in England to adopt our new Always Charter (PDF download), which sets out twelve rights that young people in inpatient units and their families should always have.

 

Please sign the petition to make sure the voices of young people and their families are heard. Always.

 

Sign the petition >

Please tell the CQC about your experiences of health and care - new online feedback facility.

 

The National Autistic Society is taking part in a national project with the CQC (Care Quality Commission, an independent regulator) called ‘Tell us about your care’. This will help the CQC to improve how services across the country support people with autism, including: Hospitals, GP practices, including walk-in centres and out-of-hours services, Dentists, Community care and support services, such as district nurses and health visitors, Clinics providing services such as family planning and slimming, Community mental health services, Ambulance services…etc.

 

How to feedback: If you or someone you care for have recently accessed a service that is subject to the CQC (e.g. the dentist or GPs) please feedback on this experience using this link: Click here

More information about this project can be found here click here

There are easy read materials about this project here. Click here

About the CQC - download here Click here  

About CQC – Click here

 

What to feedback: The CQC want to hear good and bad feedback. However, this is not a way to make a formal complaint or for whistleblowing. There are other ways to contact the CQC to do this, detailed on their website.

 

Further details are available on the ‘Tell us about your care’ guidance page but if you are not sure of anything you can also contact Tracey.Sellers@nas.org.uk

Help us share the stories of disabled children, young people and their families.

 

The National Autistic Society is part of the Disabled Children’s Partnership, which is launching an exciting new campaign this summer. We want you to be a part of it! The campaign will fight for better health and social care for disabled children, young people and their families in England. We are looking for individuals, families and carers to help tell the stories of living with a disability.

 

You can help us by participating in one or more of the following ways:

 

  • Sharing your email address and social media profiles so we can get in touch to ask you to support the campaign

  • Telling us your story and providing a picture that we can use for our blog or social media channels

  • Agreeing to appear in a short video to be used on our social media channels

  • Telling your story to a newspaper journalists and agreeing to have your photo used in the article

  • Telling your story to a TV or radio journalist

  • Sharing your story with a member of Parliament

  • Volunteering your time to help with the campaign

 

Please contact disabledchildrenspartnership@portland-communications.com if you would like to be involved.

My name is Priya Parmar and I am a postgraduate student at the Department of Psychology in Anglia Ruskin University. I am investigating gender differences and the motivation for circumscribed interests (special interests) which can therefore further contribute to research in Autism and the diagnosis. If you wish to take part in my study or for further information, please click this link: https://aruspsych.eu.qualtrics.com/jfe/form/SV_6rsmweTnvGVOvgF

 

It is a short 20- 30 minute questionnaire with a specific focus on gender differences in autism.  My research is aimed at diagnosing Autism or individuals with an Autism Spectrum Disorder earlier in life, based on research of circumscribed interests (special interests) in the autistic and normal population.

 

I am very passionate about this area of research, as there are many females left undiagnosed and with some individuals only receiving a diagnosis at a later age in life. Many females with autism mention how it is a relief to be diagnosed as they had always felt they were different to everyone else, as they struggle socialise etc. No one should ever be made to feel this way just because autism is stereotypically associated with males or individuals are misdiagnosed. I believe my research would contribute to research dedicated to diagnosing females with autism.

 

Any queries or for further information, contact Priya direct on Priya.Parmar1@student.anglia.ac.uk

Disabled Children’s Partnership launches the Secret Life of Us campaign

 

We are proud to be part of the Disabled Children’s Partnership – a coalition of more than 40 organisations who have joined together to fight for better health and social care for disabled children, young people and their families in England.

 

Our Too Much Information campaign is highlighting the negative impact the lack of public understanding of autism can have on families. Research by the Disabled Children’s Partnership shows that 97% of parents with disabled children, including children on the autism spectrum, say that people do not understand the challenges they face. To make matters worse, 69% of families with disabled children receive no support in caring for their child.

 

The Disabled Children’s Partnership, supported by The National Autistic Society, is today launching the Secret Life of Us campaign to change this and bring to life the challenges disabled children, young people and their families face. We need public support, understanding and empathy to effect change and make a lasting difference to the way disabled children, young people and their families are treated in society. In order to achieve the change we need, we will bring the realities of their lives closer to people across England. We will reveal the part of their lives that the public do not see.

 

We will reveal the Secret Life of Us. Help us fight to make this change.

 

Sign up to join the campaign >

 

Thank you for sharing your experience and views to help campaign for change for children on the autism spectrum in England.

Are you a parent of an adults (18+) with High Functioning Autism or Asperger Syndrome?

 

My name is Cirlei Loris and I am a MSc student in Public Health at University of West of England (UWE).

 

I am undertaking a research study that aims to explore parents’ views about the mental health needs of adults with High Functioning Autism (HFA) and Asperger Syndrome (AS). This study aims to give parents a voice about their views on the needs of people with autism and mental health. Your experiences and views may contribute to a better understanding of what type of support is needed to be in place for adults with High Functioning Autism and Asperger Syndrome.

 

I aim to interview parents of adults (18+) with High Functioning Autism or Asperger Syndrome who also present at least one mental health problem. Your participation is confidential and voluntary, and you can withdraw any time if you change your mind. Please see the Participant Information Sheet if you want to know more about this research and what it will involve.

 

If you would like to participate, please contact me on my email: Cirlei2.Ioris@live.uwe.ac.uk or you can text me on 07767 671633. Please let me know if you prefer to be contacted by phone or by email. I will then answer any question you may have about this study, and if you would like to proceed we will arrange a convenient time and place for the interview.

My name is Jules and I am a trainee clinical psychologist studying at the University of Bath. I've chosen to do my research exploring social confidence and self-image in people with autism and aspergers, and I'm looking for anyone aged 18 or over to take part in a survey and optional follow-up interview.

 

I'm really hoping that this is something you might be willing to share with your members? The survey is online, however, I'm also willing to attend groups or provide flyers, whatever seems best for your members.

 

Here is a link the study for more information: https://bathpsychology.eu.qualtrics.com/jfe/form/SV_73ZfgSFZqnercK9

 

Hope to hear from you soon! Jules Attwood, Trainee Clinical Psychologist, University of Bath, T:07598808670