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Carly is an Autism advocate, filmmaker and speaker. She wasn’t diagnosed with autism until she was 32, after two of her daughters were diagnosed. She found it a battle to get a diagnosis and started to notice a lack of understanding and resources when it came to autism and girls.
In this blog Carly shares her journey and talks about why we need to start recognising and supporting autistic women and girls.
Growing up feeling different
My earliest memory is being the kid that couldn’t go to preschool without my mum staying. My mum actually got a job at the preschool so I would go! I remember it seeming very noisy and busy. All the kids were playing but I wasn’t. Then when I started school that didn’t change. I remember feeling very different then and things got even harder in secondary school. I was really anxious. I started realising that I never got invited to birthday parties. I couldn’t cope with bright lights and they actually made my quite hyper. My teachers just thought I was naughty.
My parents took me to see a psychologist at 14. He said I was just lazy and his advice to my parents – which is the worst advice you give an autistic person – was she needs everything new, she needs a fresh start. So we moved house and I started a new school but life just took a downward spiral for the worst. I got into all sorts of trouble, bad boyfriends. Obviously I had no understanding of how vulnerable and naive I was, no idea of the consequences of my actions at all. I ended up pregnant at 15 and living in a homeless hostel. I had my daughter who’s wonderful and I worked hard to turn things around, but there are serious consequences to not being diagnosed and not being supported.
“You can’t be on the autistic spectrum because autistic people can’t act”
I have three daughters and two of them are autistic as well, which is how I found out that I was. My 14-year-old was diagnosed when she was six and my youngest was diagnosed when she was just two. In the process of trying to find out anything I could about autism and girls for them, I realised “oh this explains everything!”
I went to see an NHS psychologist who gave me a tick sheet with things like “Do you prefer parties or museums?” – you know, one of those. I scored quite highly on it but then he asked “What are your hobbies?” and I said “I love acting” and he said “Oh then you can’t be on the autistic spectrum because autistic people can’t act”.
I left it for a while, then I wrote to the lady who discovered Asperger’s. I wanted to film it so that no-one else would have to go through this alone. Because I felt so alone. She invited me to meet her and I finally got my diagnosis – on film! There was a mixture of emotions but overall it was complete elation. I had my answers and I could start rebuilding my life, understanding who I am. I always felt like a second class ‘normal’ person and now I know that I’m a top class autistic, so I’m fine!
Why is autism in girls overlooked?
I was told in 2008 by educational staff that it was impossible that I could have two autistic daughters because autism only happens to boys. Every book I picked up to try to understand and support my daughters all referred to “he” or “my son”. There was nothing for girls. I just thought why?
I think gender stereotypes are a big problem. Not only are there lots of women who are undiagnosed and unsupported, there are lots of men who present themselves in a more feminine way and they’re not diagnosed and supported either because they’re not the stereotypical view of what autism is – they’re not “train spotters” or like “Rain Man”. Also, female pain and female differences aren’t always taken as seriously. It’s always “Oh they’re probably hormonal”. Even my reaction to the sensory overload was seen as “Oh she’s in a bad mood” – and being autistic, I couldn’t explain my discomfort to them.
Then there’s what I call the ‘chameleon effect’ – masking your differences and trying to blend in. We do this just to survive in a scary, unpredictable world. Things are changing but there are still pockets in the UK where this is happening and girls aren’t being believed and supported.
I want to make sure the girls in our country are protected and supported
Globally there needs to be more recognition of autism and girls. In the UK it’s a really exciting time because I’m looking around and seeing so much more awareness. People finally believe we exist – yippee! That’s my first eight years done. Now my next eight years will be about making sure we have equality; making sure we have the same protection and opportunities as everyone else.
Some things that happened in my life were awful but in hindsight I’m grateful now because I know how important it is to make sure that the girls in our country are protected and given proper support. I spent 32 years of my life thinking I must be “stupid”, “crazy” or “unliked”. Being diagnosed gives you an understanding that this is how you see things and this is how other people see things differently to you. It gives you self-awareness. I’ve got a lot more confidence now. The hardest thing is knowing who you are after years of it being eroded away. I’m still discovering myself now but it’s quite exciting. I’m getting there!
Jonathan Roberts has written a story book about his daughter, Kya, who was diagnosed with autism. After a great reaction to his book from Kya’s family and the professionals who work with her, Jon is hoping to publish it as a paperback.
Getting a diagnosis
We adopted Kya at 17 months old. We realised fairly soon that there were differences between Kya and other children of her age and we initially put this down to post adoption attachment issues. Kya’s Health Visitor raised her concerns and referred her for an assessment with regards to her development delays which resulted in a diagnosis of severe autism.
As Kya’s parents we’re blessed – she is a lovely, placid happy child and I wanted to capture her lovely little quirks before we forgot them so I started to record them. I started writing things down and showed my wife Sarah. She liked them and we thought it might make a little book.
When Kya started mainstream school, the children in her class asked the teacher questions about her, like:
“Why is Kya allowed to run around?”
Kya has lot of energy and finds it difficult to sit still. It’s hard for us to keep up with her sometimes, particularly when we are out shopping and we forget her rucksack with reins. Luckily, we live near some long, sandy beaches and open spaces where Kya can run around in a relatively safe environment but we still have to keep our eye on her all the time! She doesn’t understand danger so she’s always climbing stairs, railings and on top of kitchen work tops. It can be very tiring!
“Why won’t Kya talk?”
She has difficulty concentrating and finds it hard to communicate. She has delays with her speech and often babbles but she is learning a few words now. When we read the book to her, she points and says, “Kya!” and looks at me for approval. She loves looking at the book but she has a tendency to rip things up, it is like her sign of approval, as if she is multiplying things as opposed to destroying them.
Picturing a book
I wanted to create a nice, pretty looking and simple to read book explaining her differences and beautiful quirks. I wanted the book to be illustrated simply yet beautifully. We got in touch with Hannah Rounding, who was spot on with her pictures even though she had never met us!
We hope Through the Eyes of Me will help siblings, classmates and anyone who knows of someone on the autism spectrum.
Throughout Disability History Month we have been celebrating the lives of disabled people from the past such as Franklin Delano Roosevelt, Alfred Nobel and Frida Kahlo and explored the changing lives and experiences of older disabled people living in the UK.
In the final week of Disability History Month, Jack Welch, who campaigns to raise awareness of the challenges people with autism face, looks at the importance of language, the theme of UK Disability History Month 2016.
In the UK, we’ve made good progress in recent decades to provide legislation on the rights of disabled people. Despite these changes there are deeper challenges and barriers people with visible or invisible conditions still encounter.
For someone like myself on the autistic spectrum, the obstacles to get the right level of support in a mainstream school and identifying what reasonable adjustments are needed in employment are just a couple of examples that many, like myself, have to confront.
Disability hate crime
From recent research by the Equality and Human Rights Commission, figures on disability related hate crime are worrying and attitudes towards disabled people are still of great concern. Disabled people aged 10-15 were almost twice as likely to have experienced a crime compared to non-disabled people (22% contrasted with 12.4%).
If levels of hate crime are still happening at this rate, despite recent developments and more positive portrayals of disabled people as we’ve seen with Rio 2012, we need to redouble our efforts to make people more aware of using language that is respectful of disabled people.
I experienced a disability related incident on London underground recently. I was left shaken and frustrated at other people’s ambivalence and that they choose to look away. Those who verbally attacked me were younger than me. Scope’s End the Awkward research, shows younger people often have difficulty in approaching a disabled person. What role can schools and education play to improve this attitude towards disabled people?
So what can we do? Newspapers and other media outlets still use phrases like ‘suffering with autism’. I have autism, I don’t feel I ‘suffer’ from it.
Language plays a central role in how we perceive individuals with certain conditions and that in turn reflects our behaviour when we meet a disabled person.
We all must consider the language we use and how it can affect disabled people, and we need to begin from a young age. It’s more difficult to confront and combat prejudice at a later stage.
We need to prevent negative attitudes from developing and leading to the incident I experienced.
Disabled women are twice as likely to experience domestic abuse than non-disabled women, yet support services aren’t always accessible. Disabled people can also face unique challenges in recognising and reporting abuse. It’s an issue that isn’t often spoken about. This needs to change.
With this in mind, domestic abuse charity Safe Lives is doing a ‘spotlight’ throughout October and November, focusing on how professionals can better support disabled people experiencing abuse. They have been posting resources, webinars, blogs and podcasts and they are doing a live Twitter Q&A on Friday 2 December.
We spoke to Carly, an advocate for autism and girls, about why this is so important.
I was diagnosed with Asperger’s at 32 which is a late diagnosis, but autism in girls wasn’t really understood. I have three daughters; two of them are autistic as well, which is how I found out that I was. I was looking up everything I could about autism and girls and thought “I’m autistic too” – I ended up being diagnosed on film! The consequences of not being diagnosed can be severe, including being in unhealthy relationships.
Recognising and reporting abuse can be harder for disabled people
For us all in society, disabled or not, the very nature of what abuse is can be murky. All too often we see adverts of women with bruises as an image of domestic abuse. Abuse, however, takes many forms. It’s difficult enough to recognise and report abuse for anyone experiencing it, but for disabled people it can be even harder.
The choice for a disabled person to leave their abuser is not an equal choice to those who do not rely on their abuser for their daily care as well. And how can a person with a social and communication condition have the equality of access to leave, when they may not even realise that what they are experiencing is abuse?
A lot of autistic people are vulnerable because of our lack of social imagination which is about understanding “If I do this, what happens next?” – consequences. We’re very often so consumed in our own thoughts that we think other people have the same wants, needs and agendas as we do, which can lead to us being very vulnerable. Another thing is our theory of mind – we imagine that other people have similar thoughts to us. So if you knew you were experiencing abuse, you may not report it because you think that other people already know. Because you know, they must do too. It can lead to an autistic person being very angry and resentful because they think “Why aren’t you helping me?” – it’s because that person doesn’t know. You need to ask us direct questions, basically.
A “one size fits all” approach to domestic abuse doesn’t work
It’s only in recent times that coercive control has become a legal offence. For someone on the autistic spectrum who requires support with their routine, the control of their lifestyle, the control of their access to social events and family and control of their money, this could easily disguise an abusive relationship to an onlooker. Mix this with an autistic person’s fear of dramatic change, delay in emotional processing and the theory of mind differences described above, and you can see how someone may not seek help.
We need our safeguarding explained in a different way and support services need to be more accessible. The stuff that’s out there is really good but some little add ons would help. I’ve had a meeting with the NSPCC about their schools workshops and I’ve created a short online course on safeguarding for people with autism, which is free to do. Hopefully it will help people think differently.
Including disabled people in these important conversations
Safe Lives’ spotlight on this issue is vital. The protection of disabled people from abuse is a multi-layered complex matter that simply is not covered by standard safeguarding projects. The media also all too often leave our unique needs and experiences to one side in the vital adverts and workshops on abuse – how to recognise it and how to seek help.
I think for many people, disabled adults are either viewed as not having relationships or sex and therefore void from these conversations, or seen as just being able to access the same sexual health and abuse information as everyone else. Of course, in reality, this is not the case. The most vulnerable in society are often the last to be supported. Disabled people aren’t asking for special treatment but we are asking for a fitting reflection of our experiences in society and to be part of the conversation, a seamless inclusion and not an afterthought.
Felix took part in First Impressions, First Experiences, a pre-employment course for young disabled jobseekers. Since then he’s been working hard to reach his goals and he’s passionate about changing employers’ attitudes towards disability.
For End the Awkward, Felix talks about how he learned to see disability in a positive light and why employers need to do the same.
Before I joined Scope’s pre-employment programme, I was working for a firm in East London. Unfortunately it didn’t go according to plan and I realised that, while my autism can’t be ignored, it isn’t something that I should be ashamed of.
Now I talk about disability in a positive light
In the past, I wouldn’t have disclosed my autism to potential employers, but Scope’s pre-employment programme taught me how to talk about it in a positive way. Now I do talk about autism and those who I’ve worked with have seen it in a positive light. Instead of just seeing autism as a negative, I’ve shown that there are many positives as well.
I think there are two ways to improve inclusiveness in the workplace. The first thing is for employers to be educated about disability, but another way is for potential candidates, who are disabled, to strike up the confidence to say “This is my condition, this is why I need support”. I’ve also learned to highlight the positives that I can bring to the workplace so that potential employers don’t feel the need to question my abilities.
Employers shouldn’t hide from disability
I read an article about how 49 per cent of companies don’t want to hire someone who has learning difficulties and that affected me because I’m part of that demographic. And unfortunately, it said further on in the article that only 7% of people with learning difficulties are in employment which means that 93% have been forgotten about.
Workplaces can be more autism friendly by being patient when it comes to communication, reinforcing boundaries regarding employee relations, and if there is an incident where the individual is anxious then it would be best to find to out why. They should acknowledge that autistic people have skills and see how those skills could be best utilised by the organisation.
Education is key
I discovered that two thirds of the public are still uncomfortable with people with disabilities, and that’s very clear in terms of employment and in terms of social life. There’s a long way to go to improve attitudes and awareness.
I feel like there’s a lack of diversity regarding the public image of disabled people. When people think of a disabled person they usually think of somebody who’s using a wheelchair. But it’s so much more.
People need to be educated about what cerebral palsy is, about what autism is, how they can make adaptations, and so on. Education is key so that employers know how to support that person’s needs. You could have a positive mindset but if the work environment isn’t supportive, it can go downhill from there.
Everybody brings something new to the table
I think that awareness campaigns like End the Awkwardcan have an impact on employers and on the wider public. Disability is a broad spectrum. Just because someone is disabled, doesn’t automatically mean they can’t do something.
You can’t compare yourself to everybody else. Can you imagine how bland and boring the world would be if everybody was the same? Everybody brings something new to the table. My achievements are a testament to how disability doesn’t have to be a barrier to having a good life. It’s time other people realised that.
Jules is an actor and a regular on Holby City. He also happens to have Asperger syndrome, which is a form of autism.
As part of 30 Under 30, we chatted to him about acting, attitudes and how Access All Areas helped him break into the industry.
My love of acting came from watching a lot of Steve Martin movies which made me feel really good. I also loved going to the theatre and the cinema. I watched lots of films and always thought I’d like to do something like that. Acting made me feel good about myself. I think that really inspired me.
I did a course through Access All Areas, who also now act as my agent. I made some good friends during that time and it was a really good experience because it helped my acting. I improved so much. It meant I could get to the next level.
Landing a role on Holby City
I got an audition thanks to Access All Areas who also now act as my agent. I was fabulous (as always!) and I passed the audition with flying colours. It was very challenging at the beginning because I was walking into something completely new. As the months went on I became comfortable and settled in well and I actually really like it now. I think I’ve come a long way in the last year. I always jump out of bed with enthusiasm, even though I’m leaving at half 6 in the morning.
I play Jason Haynes. He has a different type of Asperger’s to myself. I think he’s a lot geekier than I am. He’s a very nice man but he lacks confidence. I feel like I’m playing a completely different person. That’s why it’s interesting. It’s really fun on set with the cast and crew. It’s a long day but it’s good. I always feel very proud of myself at the end of the day. I feel like I’ve tried my best and done a good job. I like that lots of parents with autistic children have enjoyed it. It’s a great thing that I’ve been able to do.
I hope attitudes in the industry get better
There was a point where I was very frustrated with the industry because I was seeing all these films that had a character with autism and it was so often played by a neuro-typical person. In Rain Man and Black Balloon, for example, the actors in those two films don’t have the condition. It’s frustrating that directors and producers don’t do enough research because there are people out there with the conditions that can play these parts.
It’s important for disabled actors to play disabled characters, and I think they can play characters who don’t have a condition too. I want the industry to be a little bit more understanding and to not ignore autistic talent like it has done for far too long. I would say it’s improving now but it could get a lot better.
I think it’s really good that shows like Holby City are starting to look into diversity more. When I first started I saw one negative comment on Facebook, someone who followed the show who didn’t understand Asperger’s. But everyone else has been really supportive.
It’s great to have role models
Steve Martin, John Travolta and Morgan Freeman are some of my favourite actors, and Kevin Spacey, Tim Robbins, Jeff Bridges – I’ve got lots. Jim Carrey as well. All these people make me so excited to be an actor and it’s really great to have these role models because I happen to think that actors and comedians are the best people in the world.
I hope that I’m seen as a role model. I hope that I’m encouraging people with other conditions or people who are on the spectrum and have autism or mild learning difficulties. If they watch me on Holby City I hope I’m showing them that it can happen for them and they shouldn’t lose faith and hope. I’m sure they can do it if they put their mind to it.
I think that I’ve done a good job at making people more aware of autism and making it relevant in the acting world. I’m showing that if people with autism want to do this kind of work they can, and it’s not impossible.
My advice for other young disabled actors
Keep a positive frame of mind and try your best. Of course there will be hard times but you’ll get through it. Try your very best to get where you want to go. Sometimes it doesn’t work out the way you want but maybe it just takes time.
Holby City has been the highlight of my career. It’s a very rewarding job and I’m hoping that it will lead to other work in the future. It’s been my first big break really. I’d love to do movies here and in America, more TV and theatre. I’d like to do a whole variety of things.
Callum Brazzo is a 24 year old autistic performance poet and social entrepreneur from Lincolnshire. Performing his poetry at live events and on YouTube, he is getting a strong following.
As part of 30 Under 30, Callum talks about using poetry as an outlet and his new social venture, Spergy, which he has just set up.
My love for poetry was organic. It evolved out of my personal struggle. It was an escape for me because I was being bullied at the time. I was bullied for various things including my shyness, my lack of eye contact and my ticks. As they were physical ticks, people used to make fun of me because of those. I tended to push people away.
I became very depressed, I was on antidepressants and was juggled between psychologists. My emotions were very raw and I needed a platform to release that anger. My poetry was a way for me to communicate all of that in a positive way.
Giving something back
Poetry was and still is a positive outlet for me. I think everyone should try and find their own positive outlet.
‘Spergy’ is my social venture. It’s an arts based platform for people on or interested in the autistic spectrum.
It’s expressive, fun and free. I wanted to go give back to the community and offer an arts based outlet to them. Like I had whilst growing up. My personal journey has become a collective journey. That’s my way of giving back.
There was no defined starting point, it just happened. We’ve really had to operate on a shoestring but I’m really proud of what we’ve achieved so far. It was so organic and it’s continuing in that fashion. The website is being built by the community. For example, there are certain groups already like poetry and food but people can add their own if they want. They can post whatever they like, it could be a painting or some photography.
It’s in its infancy at the moment but I’d like to make it compatible with EyeGaze technology and make it possible for people to use the site in different ways.
I want people to make what they want to make and to feel appreciated and valued for their work. I’d really like people to benefit in meaningful ways.
Some people don’t think autistic people can be creative. They think we have a rigid mindset. ‘Spergy’ and I can help to dispel that myth.
This Volunteers’ Week, we spoke to one of our volunteering and Scope for Change stars, Jack Welch, who gives much of his time to a number of different charities.
As part of 30 Under 30, he talks about how volunteering has benefited him. Several of the organisations he has volunteered for have also sent in some glowing testimonials.
Volunteering is a way to explore new opportunities and different ways of working. You can also meet new people and develop your networks. It’s the variety that’s always the most exciting!
I think there is a lot out there for people to get stuck into. Volunteering for charities doesn’t just mean volunteering in a charity shop – there are loads of different things you can do.
For me, volunteering has helped me to build on social skills, communicate with others and be a bit more independent. You really develop that over time. Although it’s volunteering, there’s an expectation of having a skillset that you need to commit yourself to.
It gave me the opportunity to move away from some of the troubles I had at secondary school. I’m not as anxious as I used to be. It’s been great to have a bit more independence away from home and the family. I’ve really expanded and broadened my networks beyond the safety of my closest relatives.
It’s really changed me. Five or six years ago, the thought of using public transport would have terrified me but now it’s just second nature. I travel quite a lot for my volunteering.
For someone thinking about volunteering, I would say go for it. If you spot something that might develop your skill set, help you move into employment or meet new people, get involved!
Be a bit brave, take part and go for it.
Testimonials for Jack
Jack has left a lasting impression at all of the charities and organisations he has worked for. Below are just a handful of the glowing testimonials given to us by some of these organisations.
Jessica Benham, Outreach Officer for Holocaust Memorial Day Trust
“Jack has been working with the Holocaust Memorial Day Trust for four years. He has attended workshops, engaged with Holocaust survivors and raised awareness about the Holocaust and subsequent genocides amongst his peers. Jack has been an exceptional member of the Youth Champion Board, contributing to the development of the Youth Champion programme to ensure that people aged 14-24 are empowered to hold their own activities for Holocaust Memorial Day.”
Dave Thompson, the Director of Dorset Youth Association
“We first met Jack many years ago as a quiet and shy young man.
Through the years we have seen him develop and grow as he has become involved in more and more community projects. Jack was heavily involved in our Young Remembers project which looked at the History of Dorset Youth Association (DYA) over 70 years. Jack and his peers were so passionate about their heritage and wished to continue to meet as a group to volunteer. Therefore staff at DYA attracted new monies to support the group in a major fundraising initiative. This investment attracted almost £40,000 and led to a new youth led project Walking in their Shoes.
Jack is always polite and pleased to volunteer his time to help others.”
Amber DeRosa, Participation Officer at the National Children’s Bureau
“Jack has been an active member of Young National Children’s Bureau (YNCB) since 2015. During this time, he has been actively engaged in a range of activities and events including speaking at conferences, debates and meetings, campaigning work and taking part in various discussion groups and consultations.
Jack is a delightful young person to work with. He continually makes valued and thoughtful contributions to NCB’s various programmes of work and through this he genuinely makes a big difference to the lives of other children and young people. He is hugely reliable and very dedicated to the activities which he volunteers to be a part of and is extremely popular across all of NCB!”
Harris Lorie, Programme Manager for Spirit of 2012
“Jack has been a highly committed and valued member of Spirit of 2012’s Youth Advisory Panel (YAP). His contributions in our meetings are measured and thoughtful, drawing on a wide range of experience. He has assessed grant applications sensitively, impressing both other YAP members and the Spirit staff team. Jack volunteers enthusiastically for opportunities that come up, be that visits to our projects or attending a national gathering of youth panels. He always represents Spirit professionally, and creates great communications material for us as well. Thank you Jack!”
It’s National Siblings Day on Sunday so we chatted to Joe, who has autism, and his sisters Charlie and Lauren. In this blog they talk about growing up together, their achievements and how their lives have been shaped by autism.
I live in Much Hadham with my parents and my sister Lauren. My hobbies are computers and reading. I also like hiking and indoor climbing. At the moment I’m working for East Herts District Council as a BSU Officer for Environmental Health. It’s basically filing, scanning, taking messages. I like that I get on with everybody, it boosts my confidence and I like keeping busy. People don’t treat me differently. My colleagues just treat me like anyone else, as a friend.
Autism doesn’t stop me from enjoying life
I found out about my autism diagnosis from my doctor and my mum when we arranged for me to have a personal tutor at college. Until then I just thought that’s how being a teenager was. But it doesn’t stop me from enjoying life at all.
Autism might affect me at first when it comes to social situations but I’ve found that it helps me too. I’ll admit, when I started taking phone calls at work it was daunting but I thought I should overcome that problem just by practicing using the phone. Holding back from situations like this wouldn’t do me any good.
My family have supported me and made me feel positive about my life. Like most families we have our ups and downs but most of the time we get on great. We go on trips to the cinema or somewhere to eat, to the theatre or just shopping. Mind you, when it comes to clothes shopping, I do like my sisters but I find the way they shop a bit boring. But I suppose other guys who have sisters are the same.
Joe’s advice for other people
I’m settled at the moment and grateful for everything that has happened to me so far. Where I’m working is the best employment as far as I know. I love living here and I’m not planning to move anywhere else, not for a long time anyway.
From my experience, my advice is to be positive about autism; don’t think of it as a negative thing. If I feel positive about autism and I’m not letting it affect my life too much, other people can do the same too.
Lauren and Charlie
Joe is just Joe
Charlie: Joe can be a very sweet, thoughtful, nice guy. He loves computer games and pop music, and he has quite a silly sense of humour.
Lauren: One of the things I like is that he gets my sense of humour. I’m quite sarcastic and they say you’re never meant to be sarcastic to someone with autism because they will take you literally, but he gets me.
Charlie: He once told someone to ‘eat his shorts’ when she told him off, because we used to all watch The Simpsons together when we were little. That always tickles me.
Lauren: Everybody loves him, from his colleagues to his tutors at college. I remember at his student of the year event, people turning round to us and saying ‘Oh you’re Joe’s family! You’re so lucky; he’s such a lovely boy.’
Charlie: He’s painfully honest though. He’d say things like ‘no offense Charlie but shouldn’t you have moved out by now?’
Lauren: One my favourite stories was when he went for his DLA assessment. He’s never really been a drinker, but we’ll have a glass of champagne at New Year’s. At his DLA interview they asked him ‘What do you drink?’ and he said ‘Coke, but occasionally champagne.’ And obviously DLA is a benefit so we had to back track and be like ‘very very very very rarely!’
The flip side
Lauren: You can get jealous of the amount of attention that is paid to them and when they’re allowed to do certain things. When you’re younger you don’t understand why, it’s just “why is he allowed to do that if I’m not?” but as you get older you realise it’s ‘anything for an easy life’ – they’re just simple things that will make him happy.
Charlie: We sometimes felt protective, like any sister would. If anyone said anything about Joe I wanted to rip their head off. Kids can be horrible but they don’t mean anything by it. They just see someone doing something that’s not ‘the norm’ and they comment on it. Lauren has always been better at dealing with it than I have.
Lauren: When I found out that he had autism I think I was about 7. I remember mum explaining it to me and being like ‘oh yeah, of course’. It just all made sense. I used to spend a lot of time researching autism. I didn’t really know how to talk about it, I didn’t want to talk about it and there wasn’t like a school guidance counsellor or anything. So I just used to read about it a lot.
At school I found out there was a boy who had an autistic sister and I remember being excited to talk to him. But then he told me that she has really high support needs and I was a bit taken aback, because that’s not something I could relate to.
Charlie: I’m the only person I know who’s got an autistic brother, other than Lauren obviously. Some people act like they know about autism in a very patronising way. They don’t mean to be.
Lauren: It’s that innocent ignorance that Scope talks about in End the Awkward.
Charlie: When Joe was in college he won ‘Student of the Year’ two years running. I was head girl at my sixth form and so was Lauren. I love that we’ve all shared the same sort of accolades. That was really nice.
Lauren: I credit a lot of who I am to Joe. I think I’m a nice person and I have empathy for people. For my dissertation at university I did a political research report for an MP. Joe was looking for jobs and I was getting incredibly frustrated because he had all these skills, he was diligent and hard-working – so why wasn’t he getting a job? That’s what I chose to look into. It’s always shaped what I’ve done, including my job today.