It was a real treat to be invited as a guest for BBC Newscast with Jane Garvey and Greg James . Our discussion was Anti Vaxxers and how for the Autistic community Anti Vaccine mindsets are something we have dealt and struggled with for decades . With a new Cornavirus vaccine in the pipeline what concerns to resistance does this bring ?05 August 2020
I am writing to you after taking a break from a dot-to-dot quiz type book on a Friday morning evening from the comfort of my sofa, 24 hours after having a LLETZ procedure. For those amongst you who have had this procedure before, or those following my now slightly regrettable choice to LIVE TWEET my smear journey, you’ll know it’s a loop procedure to remove abnormal cervical cells caught on a smear test.
In my case, that was an overdue smear test which I put off for almost a year with anything and everything coming before my own health.
I am a single parent of three, two of my daughters are autistic, I am self-employed, have a massive mortgage and I home educate my kids. All of this, plus my cat’s vet appointment to prevent him getting ticks came BEFORE ME on the list of priorities.
Parents and carers – we NEED TO PUT OURSELVES FIRST SOMETIMES!
Staying safe with screenings
This rather stark wake-up call of ‘High Grade, Severe Dyskaryosis’ got me thinking, not sleeping and doing better research than the FBI on cervical screening, abnormal cells and early cervical cancer data. What I learned from this, among many other things, was a higher risk of abnormal cervical cell treatment for:
A woman who had sexual intercourse at an early age
Women who had given birth before the age of 17
Women who had had multiple partners
Women who had HPV
Now, being autistic (as with many autistic adults), my brain is visual. As a child this made me particularly skilled at dot-to-dot books, where completion took seconds, regardless of the fact I also have dyscalculia and struggle to read numbers. As a young adult, this quality helped me recall events and discussions due to an almost photogenic precision with customers at work; as an older adult is a vital part of my work, meaning I can almost dig out what was then considered a useless fact or statistic and realise it was perhaps the missing number or dot to see the bigger picture. This is a skill that’s imperative when working with strategy, policies and loophole finding!
Now all this sounds rather grand, but as the wise autism consultant Sarah Hendrix says in her Autism and Girls talks ‘your intelligence won’t keep you safe.’
And sadly, she’s right. In 2016 I ran an informal survey online with 88 autistic adults. 91% reported experiencing abuse prior to diagnosis. Now I know for everyone, and most of all parents, reading this it is a worrying statistic, but the silver lining is that 73% said after diagnosis and/or subsequent support they either experienced no abuse or felt able to report the abuse.
Inclusive sex and relationships education
In that the same year, I attended the United Nations and pleaded for better Sex Education for home educated girls who often miss out on not only everyday learnings but also Sex Ed, safeguarding and immunisations, including HPV.
September 16th-20th is Sexual Health Awareness Week 16th. The theme of the awareness week this year is inclusivity; relationships, sex and disability.
It gives me great joy that disability is a core part of this year’s theme. And that My Family, Our Needs is giving it the attention it deserves with some must-read articles lined up for the awareness week. Make sure you don’t miss them.
The theme of the United Nations Sustainable Developmental Goals ‘No one left behind’ must be in the mindset of all policies. This doesn’t need to be disability focused or specific, it just needs to find the hardest to reach and work from that position outwards.
When we reach the hardest to reach, we reach everyone else along the way.
Have a look at these statistics:
19-31% of disabled women access smear tests as opposed to the 73% of general population.
Autistic adults have an average life expectancy of 37-53 years.
Disabled people are being left behind and things must be done to ensure they are included in every aspect of life. We must not assume that children with disabilities do not grow up to be adults with sex lives.
The bigger picture is how to make that a consenting, positive, safe and healthy experience for them?
14 June 2020
I’ve been talking to Government departments on why we need boards and panels in the UK that are representative of the people it serves. We need disabled professional board panels as standard.
It’s not only the right thing to do but the smart thing to do; it saves time, money and lives.
Advocacy is the only job I can think of where your actual role is hoping your role will never be needed again. If you do it right, eventually you’ll work your way out of a job.
I hope by the time your children are adults, this article will feel 100 years out of date because the educational system, GCSEs and the like will have evolved beyond recognition.
The role of being an advocate means wearing many hats. In the morning you could be writing an article for the Financial Times about the legislative loopholes in Fintech and DVLA policy which leaves the UKs most vulnerable exposed to financial abuse. In the afternoon, you may have an appointment at the office giving Safeguarding training with the parents and preteen girl who’s been victim to an assault. Sunday morning you could be cleaning up the mess of the autism youth club and first thing Monday you could be in a suit addressing the United Nations.
A bizarre self-inflicted life choice for an autistic woman whose very condition itself yearns for routine.
However, I have found a haven in Government public appointments. The Commissioner for Public Appointments’ Annual Report was published last week, and it is a must-read for all public bodies committed to diversity and inclusion. With 6% of new appointments being made to individuals declaring a disability, the report highlights that there is still a long way to go when it comes to under-representation in public appointments.
However, the process to apply is very autism friendly and the roles tend to be more routine driven. I’ll be honest, I was surprised I was given the roles, although my work has reached the United Nations, Washington DC and Cambridge University. I left school at 15, pregnant, homeless with no GCSEs and therefore I lack a sparkling education history on my CV. The government public appointments website for such panels, however, invite applicants to send a cover letter and personal statement to support their CV. Without this, people like me would be left behind and it is a shame for other departments and organisations that don’t follow this model as appointing an autistic professional may be one of the smartest moves a manager can make.
The Nolan principals
It was during this work that I was forwarded the 7 principles of public life, also known as the Nolan principals. These form the basis of the ethical standards expected of public office holders:
All talents not academically tested, all fundamental qualities of public appointments and all a predisposition naturally hardwired into the autistic mindset. I thought of my daughters and the young autistic people I support and struggled to think of one who didn’t have these 7 principles, without even trying.
So, what if our UK schools tested our children on these Public Service traits? What if there was a GCSE in kindness? What if you could obtain A levels in integrity, honesty and leadership? More importantly what if ALL employers sought to employ those who naturally live by the Nolan principals? What if ALL employees looked past the academic history and were more interested in what the university of life had taught you? What would the prospects be for our children that naturally possess these traits that cannot be taught or bought?
What a disservice to effectiveness, our boards and our budgets to not understand the importance of embracing them?
I’ve said before that I believe autistic perspectives are the UKs untapped oil. I don’t think that anymore – I KNOW IT.
If you could create a new GCSE for your child what would it be?
What accessibility measure would your child need to be able to learn effectively? I home educate my secondary school age daughter as school just didn’t work for her. She, like myself, seems to be able to write and read more constructively at 5am rather than 2pm. There are also days when the sensory issues of school would build up to such a degree that a day off was required. What struck me was that the day off would never be to laze around but, in fact, she would want to learn on the laptop or in the library and the like. Is the educational system missing a trick? What if, just like many jobs, we could have nationally supported and universally funded flexitime at school? Or remote schooling?
Or simply, mental health days off for our young people to restock, recharge or redirect their hours of learning into a subject matter they adore and will one day make a career of? A career they gained not because of their GCSEs but because of their success at the university of life?14 June 2020
(quote from NICE article March 25th 2020)
”Patient groups and representatives were concerned that applying the score to people with learning disabilities, autism and other stable long-term disabilities, would put them at a disadvantage when decisions were made about admission to critical care in this time of intense pressure.
The NHS Specialist Clinical Frailty Network has since updated their advice on using the CFS, stating that it should not be used in isolation to direct clinical decision making and that clinicians should take any decisions about care in conjunction with patients and their carers where possible.
The new advice also includes a clarification that the tool should not be used in certain groups, including those with learning disabilities or with stable long-term disabilities such as cerebral palsy.
NICE has now (25 March) updated the rapid COVID-19 critical care guideline to reflect these clarifications and to emphasise the need to consider additional patient factors when interpreting the CFS score.”
https://www.nice.org.uk/news/article/nice-updates-rapid-covid-19-guideline-on-critical-care?utm_medium=social&utm_source=facebook&utm_campaign=covid19criticalcareupdate&fbclid=IwAR0EBIwez_yPpng9IyWBewb90T7SWO3QoCU6EVEggSbbDFdLPrs86C71NOk26 March 2020
An urgent open letter to U.K. mortgage providers during the Coronavirus Pandemic .
Coronavirus has hit us all hard here in the U.K. ,physically ,mental and for the majority of us financially.
As a a self employed advocate who works to safeguard the most vulnerable in society it’s a frustrating time ,the dread of self isolation meaning I cannot safety provide the volunteer work I do to safeguard the Autistic adults and youths I have a duty of care to
I am pleading with you to step in and help me help others throughout the U.K.
It’s times like these where the UKs most vulnerable become the clear canaries in the coal mine . Everyone is affected ,But they are affected harder and faster .
Many of the Autistic adults and indeed non autistic adults I support have experienced ongoing financial abuse
Many parents I see on either a low to no paid capacity simply because they have their savings ,home or mortgage tied up by an ex spouse who no longer pays towards these financial ties , but in exactly the way coercion works , ex spouse also refuses consent to cut such ties and free the other of their financial connections to them.
When our prime minister announced a 3 month mortgage holiday for home owners my leap of happiness and relief and was quickly met with sober knowledge this would not be easily achieved for single parent’s paying a full mortgage that was historically taken out as a joint application.
This would hard hit single parents ,Carers of disabled children , Autistic adults who’ve escaped a controlling relationship ,those who struggle at interviews so have burned the candle at both ends to become successfully self employed and now workless in a Pandemic, despite being driven to work hard to pay their way , are now trapped .
Trapped because even if you’ve been the sole payee of your mortgage for 1,5,10,15 years whilst your ex spouse hasn’t ....you have to ask consent from the joint mortgage name who isn’t contributing to obtain a mortgage holiday .
Even a government imposed one .
I plea with all U.K. mortgage providers to help by doing the following .
1) Explaining Economic abuse is both painful and triggering . Should a customer explain they are a victim of such activity TAKE EXTENSIVE NOTES and discuss these notes with whoever you need to pass the customer onto whilst they are on hold ,to save them retelling the story .
2) Make your “triage “ number for exceptional cases public during the Pandemic ,saving the customer having to explain the situation only to be tiered up to supervision and manager level .
3) If a customer has a court order to show in relation to the claim ,or the land registry is in their sole name , this is an exceptional case that requires exceptional circumstances and no joint name consent should be sought .
4) Historic mortgage payments are clearly stored on Mortgage statements, if a payment hasn’t been made by the ex spouse ,but has been paid in full by the applicant asking for a mortgage holiday you will have evidence that this is an authentic request .If the non paying party of joint application would have lost their home due to non payment I the time frame they refused to contribute ?,why ask their consent ?
5) Refer to the Financial Abuse code of practice that many U.K. banks and buildings society’s have signed up to ,and abide by its phenomenal guidelines . https://www.ukfinance.org.uk/financial-abuse-code-practice
A home never becomes more important than in times of being housebound ,a home never becomes more vulnerable in these times too .
Carly Jones MBE FRSA25 March 2020
Over the moon to be invited by Flying Disabled to join the Heathrow Accessibility Advisory Group to lend an Autistic perspective to flying and Airport Accessibility.
I am delighted to accept this kind invitation and hope to prove myself a hardworking and worthy advisor with strategies and ideas that really take off! *
*Pun absolutely intended01 October 2019
It was a privilege to be invited to add testimony of the unique challenges faced by Autistic women and girls and safeguarding by the Population Reference Bureau.
The Population Reference Bureau Washington DC Is developing a multimedia “road map” presenting on How to better recognise the sexual health rights and needs of disabled women and youths and how to better respond to Sexual violence against disabled women and youths .28 August 2019
Casting a wider net from just Autism specific advocacy is always a great challenge however I feel that by using the Autistic perspective and experiences ,I hope I can then find loopholes to help many people in the UK lead happier and safer lives .It was due to my advocacy work with online safety and economic abuse that it has come to my attention that there may be a loophole in protecting vulnerable men and women from financial abuse .
Due to the photographic driving licence being an acceptable form of identification and proof of residence for many paperless online loan companies and banks there is a grey area .
It is possible for a perpetrator of financial abuse to fraudulently use a drivers licence in ex partners address for up to 10 years after leaving a shared property due to the DVLA not being able to remove an address ; only able to block an address at time of next renewal date (up to 10 years )
What can we do to close this gap ?
Can we warn paperless loan providers of this loophole ?
Can we advertise to ex spouses to contact DVLA as soon as partner leaves shared home just as they would for council tax and tax credit purposes?
Can we “freeze “ the ability to use photo licence when DVLA informed its being used incorrectly?
Should there be higher penalties for those who use addresses fraudulently ?
Can we make a photograph drivers licence renewal more regular?
Could addresses be removed completely?
I have attached a link to my article in the Financial Times in this subject here ,10 July 2019
In early June ,Include me too representatives and ambassadors attended the United Nations NYC state parties event for Disability where we launched the Commonwealth Children’s Youth Disability Network .10 July 2019
It is with incredible pride that after a accessible interview process I have been appointed to the UK Honours committee in the capacity of Community and Voluntary services (CVS) member.
I am to serve a minimum of 3 years ,with a possible extension of 6 years .
I would like to thank the Cabinet Office for being so inclusive and forward thinking in selecting an Autistic adult to become a committee member. I will do my upmost to serve well .
Here's to reading all about what's great about the UK and making sure more and more diverse people doing selfless things for others in the UK are recognised.15 January 2019
29/12/2017 22:30pm MBE Statement.
To receive an MBE from our Majesty the Queen in the 2018 New year's Honours is a feeling which I am yet to be able to put into words , I am not sure I can explain with justice how exciting this recognition is to not only on a personal level but far more importantly to others that I endeavour to support as this sets firmly and publically the knowledge that as British Autistics we are valued , we are recognised and we are able . I hope , that as not only a parent of Autistic young women but also be an Autistic woman myself ,my MBE sends out a clear message that regardless of our challenges and differences , have something to offer our country of tremendous value .
We are just as able to achieve and just as likely to be recognised for our talents ,long term hard work , and hands on efforts Collectively, we have come so far in the last decade with not only our awareness of Autism as a whole but in particular the subject close to my heart of women and girls .
I hope my MBE stands as an example to professionals working with Autistic mother's that we have empathy ,make selfless acts and valuable contributions to their communities and own families .
I hope more adult women feel less afraid to disclose their Autism to friends , colleagues and families so they can find other Autistic women and feel less isolation .
I hope any young girl recently diagnosed or on the diagnosis pathway will read about this MBE and feel empowered by their diagnosis, not ashamed, as they grow to enjoy all the knowledge, safeguarding and understanding that being Autistic in the UK in 2018 and beyond has to offer. You are limitless.
Thank you my daughter's Chloe ,Honey and Cherish for the quiet sacrifices they have made either in our family time , our family finances ,or our family confidentiality, in order to support the cause of Autism and girls, for most, if not all of their own childhoods , with full understanding ,yet without question nor resentment. You're spectacular, selfless, young women.
Heartfelt thanks to my parents Adrian and Cathy Jones for their ,daily , unconditional support, patience and understanding .
Thank you for the charities and organisations that I support and who have supported me in recent years, Scope ,SWAN, Autism Berkshire,Parenting Special Children, ,Include me too ,South Hill Park , RISC , BBC Three , Channel 4 ,Network Autism ,BBC Class Act ,Thames Valley Police , Ann Memmott Independent Autism consultant ,Bracknell Forest Council and course the National Autistic society , in particular Dr Judith Gould of the Lorna Wing Centre for seeing my Autistic challenges and strengths ,in the way only she can and officially diagnosing me at 32, which put my life back on course.
I'd like to be so bold as to extend my sincere gratitude to our Majesty the Queen and Prime minister for such a humbling honour. Which I will learn to make good use of ,in order to benefit many others in the UK.
Although this truly marks how far we have come in last ten years of Autism and girls awareness work ,we still have further to go and also signals quite timely, a starting point of ambitious nationwide, "pocket free" Autism equality , equality of diagnosis regardless of ones financial situation or gender identity, equality in education , employment and more ,so British Autistics can be open without fear of stigma, about their Autism and have no barriers to sharing our often vastly underestimated skills ,talents ,knowledge and experiences to the greater benefit our not only our own quality of life but also the whole country, which we are an essential part of.
I am grateful to be raising my daughter's ,2 of 3 whom are also Autistic ,here in the UK ,and I wouldn't change being born British and being born Autistic for the entire world, in fact , I don't think I'd be an MBE if it wasn't for my Autism, as being Autistic has helped me be vastly passionate and committed to one cause for a very long time , which is from today, now cemented as my lifelong commitment and duty.
I dedicate my MBE to the Autistic community old and young ,who, despite having experienced misunderstanding and unkindness remain understanding and kind . I so wish my granddad Stan could have seen this .
Happy 2018 and "Autistic Girl Power "always ,
Carly Jones MBE15 February 2018
“BBC Class Act is a nationwide development programme which aims to support and raise the profile of disabled actors.
Last August, the BBC launched a nationwide search for talented disabled actors. From over 350 audition tapes, 32 people were were selected to attend an intensive three day skills workshop led by BBC directors. The actors were given lessons in everything from audition and camera techniques to help with their show reels, with the aim of improving their chances of being cast in more roles. At the launch, Piers Wenger from the BBC said:
“I hope the talent you see encourages you to consider disabled talent for a manner of roles. It’s crucial that all of us in the industry work collectively to nurture and include disabled actors so that we can see increased representation on our screens.”
Carly Jones, one of the talented actors who took part, tells us why this is so important to her..
Before this, I’d accepted that acting wasn’t my destiny
Before I became an Autism advocate, I was an actor. Autistic people, like me, have what many professionals call “obsessions” and what the kindest professionals call “special interests”. Mine was definitely acting.
Aged four, I would be gently placed behind the sofa every time I stood in front of my parents’ TV, wanting to be the performer. As soon as I could read, Teletext became my very first auto cue!
This led to being Mary in the school nativity, attending Ravenscourt Theatre school as a teen and eventually, becoming a frustrated actress in my 20s, snatching occasional talking parts in a sea of supporting roles.
Chasing this dream wasn’t compatible with a busy life as a divorced mother of three daughters, two of whom are also Autistic. So I decided to put my “special interest” into a box.
It was hard. I always felt more comfortable on stage than I did in everyday situations because I knew what I was meant to say and was prepared for the reply. But I accepted that acting wasn’t my destiny and moved on.
When I saw the BBC Class Act advert, my instant thought was “Ah I wish this had been around when I was younger” and I got on with my routine, but kind friends kept nudging me and eventually I thought “Blow it, I’ll audition!”
When I had a quiet hour at home alone, I taped my audition and nervously posted it “unlisted” on my YouTube channel. I planned to remove it later and never think about it again, but by some twist of fate, I was chosen!
On the first day, I was pleasantly surprised by how different we all were. There were actors with all sorts of different impairments. Also a large percentage of BBC staff and organisers were disabled – something which I naively didn’t expect.
We had three action packed days. We auditioned, did camera work, filmed our scenes and showcased our work to our directors. Surprisingly it was not half as terrifying as I expected! The subconscious worry that this was just a box ticking exercise was quashed – this event really showcased a genuine desire for change and a celebration of diversity.
Truly it was easy to forget that we were a group of ‘disabled actors’. The actors there were extremely talented and it was clear that this initiative was set up to support talented actors, who also happen to be disabled.
Rather than “let’s get some disabled people and help them act”.
I am so grateful for the three days of total support, encouragement and confidence the BBC gave me. I’m excited to see where this progresses, not only for my own personal goals, but for disability representation in the media as a whole! And maybe, just maybe, my Autistic “special interest” happens to also be a talent.03 November 2017