When my 5 year old autistic son had a breakdown due to mistreatment at school, I wrote a book called 'He's Not Naughty! A Children's Guide to Autism.' Following it's publication, I was inundated with desperate pleas for help from overwhelmed, stressed and exhausted parents who were struggling to cope. I have dedicated the last 13 years supporting tens of thousands of autism parents, for which I received an MBE. I now need your support so together we can draw on my lifetime's work, so that we can embrace technology and revolutionise the way autism support is delivered. We have an opportunity to change lives overnight!
The Idea Summary...
We have developed an autism support app to support autistic people, their carers and the professionals who work with them. With the right support from the moment autism enters your life, autistic people and their families can thrive. We have developed an instant, fully accessible and scaleable solution that will change lives. As parents of three amazing autistic people, we also intend to change the global perception of autism, so that autistic people are proud of their difference and so the world embraces autism for the colour and diversity it brings.
Deborah Brownson MBE
Mother of two autistic sons, Deborah represents families living with autism on the All-Party Parliamentary Group for Autism. She is Virgin Atlantic's Autism Ambassador and founder of global online support group, author of 'He's Not Naughty! A Children's Guide to Autism,' Lead NHS Governor for Autism at UHMBT and was awarded an MBE for her autism work.
Anna is a qualified speech and language therapist who has years of experience supporting autistic people and their families. Her frontline experience managing The National Autistic Society helpline provides a unique insight into the needs of parents and autistic people and the failings of current support services.
Nicola is the proud mother of Ellie, who is autistic. She is also a qualified solicitor who worked in two London Legal 500 firms before setting up and co-running RG Solicitors as Senior Partner. Over 10 years she grew the firm from a garden office to a three office national firm employing over 100 people. She is also regional director of The Athena Network, Kent, the leading national networking organisation for female entrepreneurs.
Josh is 16 and autistic. Josh is our Technical Assistant and our go to person for anything technical. He creates helpful visual aids, uploads content to the app, researches and advises on content. In his spare time Josh is an up and coming DJ and Music Producer.
Ellie is 12 and autistic. She creates insightful video blogs for us. In her spare time she plays football, hockey and is an expert slime maker! She also advises us on Instagram.
Jake is 13 and is autistic and has many other conditions including sensory processing disorder, sleep cycle disorder and delayed processing. Even though he finds it difficult, he creates videos for us where he tells us how it feels to be autistic. In his spare time he loves army cadets and jui jitsui.
Jake is extremely honest and advises on our content!
Emma is autistic and also an autism parent. She is our freelance communications adviser. She creates wonderfully insightful videos on a range of topics for us and is also the voiceover for our flagship video. In her spare time Emma writes blogs and enjoys relaxing outdoors with her beautiful family.
It's estimated around 700,000 people in UK have diagnosed autism. If you include their families that's 2.8 million people whose daily lives are affected by autism in the UK alone. This figure doesn't take into account those undiagnosed or waiting for a diagnosis.
Around the world it is estimated that 1% of the global population is autistic that's around 70 million people. If you include their families that 280 million people world wide whose daily lives are affected by autism.
This app appeals to autistic people, their carers, and all of the professionals that work with them. So the target audience is huge and growing daily.
We have Government support and support of many leading key autism stakeholders who all want to collaborate with us and make this work. We now need the funding to meet our ambition.
Key Design Features:
The app will eventually provide support to five groups:
- Autistic Teenagers
- Autistic Adults
- Professionals who work with the autistic community ( Teachers, Health & Social Care staff)
- Foster and adoptive carers
This round of funding will allow us to provide free support for parents and carers.
Why do we need to help autism parents and carers? The short answer is many are in crisis.
NHS Digital recently surveyed 50,800 autism parents and carers of autistic adults aged 18 or over. It's highly likely if the same survey is carried out with carers of autistic people under 18, the results would be much worse. These are the findings:
60.6% of carers reported feeling stressed in 2018-19 - an increase 57.8% from the year before.
45.1% felt depressed - an increase of 43.4% from the year before.
77.8% reported feeling tired.
66% experienced disturbed sleep.
10.6% were in severe financial difficulties
A further survey carried out by The National Autistic Society confirms that:
11% of autism carers in full-time paid employment.
92% are worried about their child's future.
76% of carers of autistic adults are receiving no support from their Local Authority.
Only 15% had ever received help from Social Services.
89% claim a break from their carer role as their biggest unmet need.
Only 16% feel the public understand autism.
79% of autistic people and their families felt socially isolated.
We need funds urgently so we can offer this app for free to any carer who needs it.
The app will provide instant support that can accessed any time, anywhere.
There will be:
- Fully interactive community where you can connect with people living the same life as you. This is often missing in the lives of autistic people and their carers. It will provide them with a safe space, to ask questions, to learn, make friendships and make mistakes in a closed, supported, safe space, without the need to ask parents or teachers questions on topics that cause embarrassment but upon which they need to know like enhanced sex education, advice around building relationships, dating, consent, building resilience etc. We truly believe with this enhanced support that less autistic adults will find themselves in the criminal justice system and more will develop social skills enabling meaningful friendships, relationships and obtaining meaningful employment all of which are essential for good mental health.
- Pre-diagnosis support, support during the diagnostic process, post diagnostic support and a lifetime support package.
- A ‘lifetime approach’ series of video support delivered and created by autistic people that they can dip in and out of when needed, via their phone. Instant, discreet, in the format that young people and busy carers need. Autistic people will be consulted as to what support they want, will create and present the content and be paid for their time.
- ‘Calm Zone’ an area to develop self emotional regulation, anger management and independence when overwhelmed.
- Autism book suggestions via JKP with author live streams and Q&A’s.
- Visual aids so you can always communicate when outside of the house
- Timers to aid transitions.
- Live streams with Q&A's with experts and autistic influencers.
- A vehicle to obtain feedback for future improvements.
- A way to share useful articles, blogs, sayings and resources.
- Complete flexibility as we can add anything as we progress.
- It will give autistic people the autonomy, independence and control to gain support when they need and want it. This will particularly help ‘looked after children’ who may not have an adult fighting for support for them.
- A place to guide parents through their autism journey and through the education system.
- A safe space away from the noise and distraction of social media where everything you need is easily accessible.
Benefits of the app format:
- Free support exactly when you need it.
- Instantly accessible, as soon as autism enters your life and supports you on a ‘lifetime approach’ basis.
- Instantly accesible via mobile phones/ipads. The Autism Plan: Autism Support on TAP. (ie..tap of your phone)
- Embracing technology makes support scaleable and instant. Overnight we could support anyone who needed it.
- It can continuously update content and react to current affairs.
- Many autistic people are more comfortable accepting support via the technology format than face to face.
- Most people have a phone with them at all times. Information can therefore be accessed at the point of need. No need to carry course notes or remember info. Support can be accessed in seconds.
- People can access the support they need, when they need it, no waiting lists, no travel time, no referrals needed.
- Environmentally friendly model.
- The data analytics of an app are excellent making it easier to analyse effectiveness and develop informed strategy to reach specific groups.
- It allows for collaboration with all the key autism stakeholders to produce the first ever truly co-produced support package that will revolutionise the way autism support is delivered throughout the UK.
- It will save the Government, the NHS and all agencies that work in this arena millions of pounds each year.
- It will be a key progress marker and once embedded will facilitate progress across all of the other desired strategic objectives such as employment, mental health and access to Health Care.
- We would consult with autistic people, their carers and professionals to create and present content and pay them for their time.
How would we use the money?
This round of money would be used to create content for the parent/carer section and enable us to offer it for free to anyone who needs support.
We would spend the money in the following ways:
- Paying autistic people to create content
- Consulting with autistic parents/ carers to ensure we deliver the content they need
- Employing a videographer
- Employing a video editor
- Employing a technical assistant to help create and upload content
- Employing a communications consultant.
- To pay for sales and marketing so we can start to create revenue through targeting autism business
- Running costs of the platform/website
- Advertising costs
- Social media campaign
- Website costs
- Funding Bid Writer
- Accountant's fees
- Content Creation
- Repaying loans we have taken out to get this far, so we don’t have to charge the end user and we can offer this for free to anyone who needs it
- To enable the creation of a not for profit organisation
Once we have successfully launched the parent/carer section, and secured further funding we will start to provide content for autistic teenagers and adults.