This week, from the 2nd to the 8th of April it’s World Autism Acceptance Week, seven days dedicated to raising awareness of the challenges and barriers that people on the autistic spectrum face, of educating others, sharing experiences, celebrating success, and fundraising to help provide better support for those dealing with autism.
Autistic people can often face discrimination and meet barriers across all sectors of society, from dealing with health and social care systems and support, to education, employment, public services, accessibility, and everywhere in-between. It’s crucial that autistic people, their families and their support network, can access tailored information, guidance and support to overcome those barriers, along with opportunities to explore their interests, develop skills and build friendships for fulfilled lives.
Statistics from the National Autistic Society reveal that:
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There are shockingly over 150,000 people on the waiting list for an autism assessment
A mere 26% of autistic young people feel happy in school
Only 29% of autistic people are in any form of employment
70% of autistic people experience mental health problems
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One of our very own Unloc Facilitators Jessi was diagnosed as being on the autistic spectrum, and we were keen to find out more about her personal experience. Jessi’s been kind enough to let us interview her and share her diagnosis and experience with you in order to celebrate World Autism Acceptance Week, and to raise awarness of what life is like dealing with neurodiversity.
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Jessi thanks so much for sharing your story with us, so that our followers can get an idea of who you are and what you do – tell us how long you’ve been working with us at Unloc, and s a bit about your role!
Certainly! Hi everyone, I’m Jessi and I’ve been with Unloc since November 2020. I originally joined the organisation as Maternity Cover for another Facilitator, and when she came back to work, I was asked to stay on as a permanent Programme Facilitator! So from July 2022, I’ve been a permanant employee focusing on Leadership Skills and Student Voice.
The biggest programmes in my portfolio are facilitating and running three Student Forums: Cambridgeshire Student Forum (CSF), Council of Portsmouth Students (CoPS) and Primary Council of Portsmouth Students (PCoPS), all of which I adore for different reasons and have had the pleasure of building and growing over the last few years!
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What’s your favourite part of being a Facilitator and working with young people?
I thrive on giving young people opportunities that I didn’t have as a young person myself – CoPS (The Council of Portsmouth Students) existed when I was at Secondary School (and would’ve been the perfect age and amount of keen-ness for it) but I grew up just outside of Portsmouth, and Student Voice wasn’t ‘big’ in my own school whatsoever, we didn’t have School Council or Reps at all! So to give these opportunities to young people in their schools now is amazing.
Another highlight is seeing young people meet new people and make friends, especially across institutions and areas – and this is often their favourite thing about sessions and programmes too!
As an ex-Drama teacher, working with young people as a Facilitator, supporting them as they learn and discover themselves, suits my style of delivery anyway – and I’m still able to draw upon all of those Drama and performance skills!
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When were you diagnosed as being on the autistic spectrum, and how did that diagnosis come about?
I’m what is called a ‘late-diagnosis’, which is common in females and those that are ‘high-functioning’ / ’low support’. I was formally diagnosed with Autism Spectrum Disorder (ASD) in July 2023 when I was 33, after beginning the process in July 2021, where I contacted my GP, was referred to a specialist, put on a (lengthy) waiting list, transferred to a private clinic, assessed in March 2023 and confirmed a few months later!
However, I first began to self-diagnose back January 2017 when I started my Masters degree – there was something about returning to the ‘other side’ of education as a student, having worked as a teacher for a number of years and had numerous students with neurodiversities, including autism, that put me in a vulnerable position enough for me to realise that perhaps I might be neurodivergent too. Being able to communicate this to my lecturers and facilitators, who hadn’t (knowingly) worked with an autistic individual before, somewhat helped everyone in accommodating as best as possible during my studies.
Recently, I was in a webinar about neurodiversity in women, with a lot of attendees being of similar age to me and having only recently been diagnosed as being on the spectrum – one of them said that they ‘mourned their childhood’ and wished they had got diagnosed earlier in life. No doubt, this is something echoed by a lot of people, but for me, I like to think:
“Don’t mourn the girl I used to be who didn’t know she was autistic; celebrate the woman who was strong enough to get diagnosed and can lead her life knowing a little bit more of who she really is.”
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Had you always realised something was different? How did that present itself?
To put it bluntly – yes. I always felt a bit odd and different, but was fortunate that a lot of times this was celebrated; a high reading age in Year 3 & 4, being in the ‘gifted and talented’ programme in Year 5 & 6, performing and ‘playing a character’ led to many a dance, drama and musical performances throughout my life. Even my clumsiness and falling over a lot was a running joke with the school nurse and my teachers. But it always came back to me feeling uncertain about my ‘place’ in relation to others, including within my own family – but I’d convinced myself that everyone felt like this at times and I just needed to ‘deal with it’.
But it got to the point quite a few times in my life where I wasn’t ‘dealing with it’ very well and it really affected my mental health with spells of depression and anxiety. These spells do and can still occur, but now I know they are comorbid (the existence of more than one condition at the same time) with my ASD, and so to consider things from that angle, as well as continually finding ways to share and celebrate my differences, really helps me to accept who I am.
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How does your autism present in your life Jessi, and what issues or challenges do you face because of it?
How long is a piece of string…?! The list is endless, honestly, and I think to share a few of these would be surprising to those that know me – whether that’s colleagues, young people I work with, friends and even family members, because I do something called ‘masking’ (a strategy to appear non-autistic in order to to blend in and be more accepted in society). Masking occurs consciously, for example, when I’m facilitating: I always say about how outwardly I need to express confidence and assurance, regardless of how I am feeling inside, and making eye contact with participants to make connections and ensure ‘engagement’ (although I’m the first one to say that someone doesn’t need to physically be looking at someone to be listening and engaging, and I actually have to ‘force’ eye contact because it doesn’t come naturally to me).
Alternatively, I sometimes mask unconsciously too (in fact everyone masks unconsciously to some extent because this behaviour stems from early social learning) and so when that mask ‘slips’, people tend to think something is wrong or that I’m not my ‘bright, bubbly, usual self’. And so by keeping the mask on, especially at work or in social situations, when I’m at home or on my own and don’t need to mask, I often ‘slump’ and am drained, needing a lot of time to recharge and do a whole lot of nothing (which is incredibly frustrating when I want to be doing things, like reading or cleaning).
I’m still working on finding a balance between my work and home life, and there’s never going to be an easy fix, but this is probably the biggest challenge I face because of my autism.
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What coping mechanisms or workarounds have you developed to help you?
I have a few things that I’ve developed to help, and am still finding coping mechanisms for others, but the ones I find that work for me:
Coping mechanisms will be different for everyone, but if something that I do can help someone else out (autistic or not), I’ll always encourage others to ‘borrow’ and ‘steal’ them to make them work for themselves – because I’ve probably stolen all of these from someone else down the line!
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Have you received much support from the NHS/your doctor? What support (if so) and how has that helped/or hindered you? Did you have to wait long for it?
The very first doctor I spoke to on the phone, who happened to be female, was very supportive and understanding when I asked to be referred and assessed – I know this is not always the case for some people (especially if their GP is an older, male doctor) and their first attempt can be ‘pushed back’ or ‘put off’ which can be disheartening – I would’ve done similarly had I worked up the courage to ‘finally’ talk to someone about it and then was dismissed.
I think the transfer of my referral from the NHS to a private company, Solutions 4 Diagnostics, was fantastic as had it been the original wait time that was predicted, I wouldn’t have likely been assessed until now (ie April 2024) – so I got seen to over a year early! In my assessment, a plan of six points was drawn, one being for my GP to refer me for psychological therapy and support – this has not come about yet and I’m not even sure my diagnosis was passed on to my GP, so I need to chase that! But I’m sure when I do, the support will be there which I am already grateful for!
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How have you found working at Unloc with autism? Have we as a company been supportive and understanding? Be completely honest!
When I started at Unloc, the UK was in Lockdown number two, so my first day was at my dining room table – which was very odd and weird but actually probably a wonder for my autism; had I started in-person, I would’ve no doubt been overwhelmed by a new office environment with practical strangers, the ‘rules’ regarding breaks and lunches (which I still struggle with now), and it would’ve been (more) exhausting to be ‘on’ during my working hours, even between meetings and induction sessions.
Unloc has a ‘flexible approach to working life’, where we try to spend 50% of our time in the office (or facilitating) and 50% working from home – this is incredible for me, especially if I am having a ‘bad day’ and would struggle in the office and around other people, I can still efficiently work in the comfort of my own workspace at home (and probably be more focussed without the usual office distractions!).
I’ve had two line managers over the years of working at Unloc, and I can honestly say both have been fantastic, always going above and beyond to support me and my ways. As has the whole team in general – everyone is so lovely and accommodating to everyone else. Don’t get me wrong, it’s not always plain sailing but it’s definitely the best environment and team I’ve worked in and with, and for that I am eternally grateful.
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What would your advice be to someone else who thinks they may be on the spectrum themselves? Do they need to worry? Can they lead a perfectly normal/happy life? Should they get help?
Firstly, if anyone feels like they may be on the spectrum, or any kind of neurodivergent, please do share these thoughts and feelings with your friends and/or family – speaking it out loud can help bring this into reality, rather than thinking it over in your head and keeping it to yourself. Conducting further exploration including personal research will help you to find you are not alone and there is wealth of information out there (sometimes overwhelming so, so try to be specific with your questions or search terms) – this can then help you if you choose to look to get a formal diagnosis.
However, a self-diagnosis is just as valid and some people choose to not formalise it – I decided I wanted to so as to open some doors in the future, for example if I choose to get medicine to assist with my anxiety and/or depression, this will now be treated with the knowledge of my autism diagnosis and so should be better suited. Reaching out to your GP, regardless of wanting a formal diagnosis or not, is ideal to speak to a professional, although remember they unlikely have much knowledge or specialism in autism, and so you may wish for them to refer you on to someone else.
Secondly, do not worry (I know, easier said than done). I’m sure at times I myself have felt worried, but this has often been overruled by relief – the realisation that this is not all made-up or in my head, but a real life condition that does affect me day to day, but I’m still here, leading a somewhat ‘normal’ life, and able to share my story.
The joy of autism, for me, is the lack of normality because everyday is exciting and different – yes it can be challenging and difficult, but we are so fortunate to live in a world that has knowledge and understanding of autism, and this is continuing to grow and get better, making it easier for people like me.
Jessi thank you so much for sharing your journey and experience with us, as you know there are so many people out there who are undiagnosed, and sharing success stories and testimonies like yours can be so helpful to other people, thank you for being such a great part of the Unloc team!
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For more information about autism and how to get a diagnosis click here
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To get details on how to get an autism assessment from the NHS click here
The energy in our Changemaker Studios: Portsmouth space was electric recently as students from schools across Portsmouth gathered together for our second Council of Portsmouth Students Summit 2021/2022.
This in-person event is a great chance for the participating students to mix and get to know their peers from other schools in the area, as well as developing their skills and working within their Action Groups to bring about change in their school and community.
This year the Summit included representatives from 11 institutions including Admiral Lord Nelson School, Castle View Academy, Charter Academy, Mayville High School, Miltoncross Academy, Park Community School, Portsmouth Grammar School, Priory School, St John’s College, Trafalgar School, and The Portsmouth Academy.
The day included icebreakers, energisers and activities led by the students themselves, with the rest of the day tailored to the students’ thoughts, opinions, input and feedback.
Our Unloc Programme Facilitator Jessi, and the facilitator of this year’s CoPS, delivered a ‘masterclass’ on Confidence and Public Speaking. We considered what ‘confidence’ means to us, why confidence is necessary, and introduced the ‘Three-Legged Stool of Self-Confidence’, discussing how each leg representing Skillful, Responsible and Appreciation needs to be balanced.
We focused a little more on the Appreciation topic, and why, as British people, we tend to find it hard to accept appreciation and to say ‘thank you’. Whether we’re embarassed, don’t believe the compliment, or don’t know how to respond, Jessi encouraged everyone to share compliments with the members of their group, and asked the received to show their gratitude with a “thanks!”.
We dived into Public Speaking, considering the different styles, famous public speakers, and the positives (and negatives) of their style of communicating. Jessi challenged everyone to give public speaking a go in the form of ‘Just A Minute’ – speaking continuously for one minute without hesitation, deviation, or repetition on a subject of their choice!
Our first Guest Speaker of the day was Fungayi Zinyemba, the Manager of the Mental Health Support Team in Portsmouth, who discussed how MHST are working with their schools to provide help and support with the mental health and wellbeing of themselves and their peers.
It was great to see the students asking questions and starting conversations about mental health, whether that be their own, their friends, or general concern for how mental health is treated in schools and their communities.
Fellow Unloc Facilitator Larissa led an Activity on Debating, where the fundamentals of debate were covered before the students participated in a ‘moving debate’, using the space to show their opinion on hot topics. The students got stuck in, sharing their thoughts on the matter, with many of them utilising the public speaking skills we had covered earlier in the day, confidently sharing with everyone in the room.
Our second Guest Speaker of the day was Lauren, a former CoPS Student from Portsmouth High School who was involved in the forum last academic year. Lauren was invited to speak to this year’s cohort about her personal experience whilst in CoPS and the actions and changes her group were able to bring about in her school and community.
After Lauren’s inspiring talk, we split off into our Action Groups! These represented key themes or current issues, these were:
The students were given time to share their priorities going forward, led by the Action Group Leaders. Each group then presented to everyone else.
It’s amazing to know the actions these young people have already been able to implement, as well as their plans for the near-future to continue to bring about change in their school and community!
It was a truly inspiring event, and wonderful to see so many young changemakers from across Portsmouth gathered together and sharing their ideas in our new Changemaker Studios: Portsmouth space!
We can’t wait to see our CoPS members at the next Summit!
Young people aged 12-25 years old across Buckinghamshire are being asked to share their views in a confidential survey in order to help develop and strengthen mental health services in the county.
Following the launch of our previous successful project with Oxford health NHS Foundation Trust to engage with young people in neighbouring Oxfordshire about their mental health, Oxford Health NHS Foundation Trust is now expanding the scope of its consultation work to include Buckinghamshire.
The mission is to give Buckinghamshire’s youth a powerful voice and be listened to; ultimately empowering them to help make ground-breaking changes, develop their own skills and potential, as well as give them a unique platform via a planned Youth Board.
Nearly 1,500 Oxfordshire young people shared their views on mental health through the previous work Unloc carried out with the Trust. Working together we now hope to repeat this success and gain a similar response in Buckinghamshire.
All response and insights shared by children and young people will enable the Trust as an NHS organisation to shape services in effectively to best support young people in the region.
In Buckinghamshire, Oxford Health NHS Foundation Trust already provide mental health services (CAMHS) and have mental health support teams embedded in schools.
The survey
The anonymous five minute survey asks young people for their views on mental health – to get a ‘temperature check’ on mental health issues. The survey has been sent to organisations, including schools, colleges and youth groups.
What happens next?
Once the survey is closed, there are plans for a series of mental health roadshows specifically for young people.
Oxford Health’s goal is to develop a Youth Board for the Trust – where engaged young people can share insights, ideas and experiences to enhance services. This is underway in Oxfordshire, with the hope to extend to Buckinghamshire.
Unloc’s extensive experience of working with young people, and of the creation and engagement of Youth Boards with organisations such as local government, universities, colleges, schools and health trusts make this the perfect partnership to engage with young people and really understand their needs and requirements.
Kerry Rogers, Director of Corporate Affairs & Company Secretary, commented:
“The Trust is pleased to continue our work with Unloc in Buckinghamshire, to support young people in as many communities as we can.“
“It is another chance for us to valuable the voices of young people, to act on their views shared and adapt our services to their needs – ultimately, working towards our vision of outstanding care.”
Sue Hadwin, Head of Service for CAMHS Community Services Buckinghamshire, added:
“Young people across counties have faced challenges throughout the pandemic – this is a chance for us to further support them in our services.
“Please fill in the survey, if you are struggling with your mental or know a young person who is your contributions will be invaluable. Please remember, if you feel anxious, upset or a struggling with something talk to someone – whether it is a loved one, some at school or us. We are here for you.”
Unloc’s Managing Director, Hayden Taylor said:
“We’re delighted to continue working with Oxford Health NHS Foundation Trust across the wider area to really understand and meet the needs of young people when it comes to mental health. Too often young people are so anxious or afraid to seek help and support, or don’t even know where to turn to in order to find it.”
“Our extensive experience within the realm of young people and the creation of Youth Boards, combined with our unique way of engaging them allow us to truly get to the heart of the matter, and best equip NHS and mental health services in the area to meet their bespoke needs.”
Are you 16-25 and living in the Buckinghamshire area?
Complete our 5 minute survey. It’s completely confidential and you won’t be asked to provide your name.
Click here to complete the survey.
You can find more information about CAMHS, including mental health support by clicking here.
Our latest impact report for the 2023-24 academic year is now available! Inside you’ll find a whole wealth of information of the work we’ve been carrying out over the past academic year!
. Unloc and Verizon Business have launched The Young Entrepreneurs Challenge for 2025, an annual event that seeks to identify the best young talent across
Help us celebrate the launch of a new rap track and music video created by young people as a united stand against knife crime, drugs, gang culture & youth violence.
The General Election is over, after an intense period, what did we learn from young people in the run-up to the election?
Our latest impact report for the 2023-24 academic year is now available! Inside you’ll find a whole wealth of information of the work we’ve been carrying out over the past academic year!
. Unloc and Verizon Business have launched The Young Entrepreneurs Challenge for 2025, an annual event that seeks to identify the best young talent across
Help us celebrate the launch of a new rap track and music video created by young people as a united stand against knife crime, drugs, gang culture & youth violence.
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