To celebrate Autistic Pride Day (18 June 2021), IP Ability has spoken to autistic IP professionals, allies working in IP, and a parent on the autism spectrum about their experiences.
Committee members Jonathan Andrews and Francesca Rivers write:
Autistic Pride Day is an annual celebration of the diversity that autistic people bring to all aspects of the world. This includes wider society and all forms of work – the IP sector being no exception.
As with many other industries, there is a growing number of openly autistic individuals joining the IP sector, as well as existing practitioners who now feel able to “come out” in greater numbers. Yet with various studies showing a low number of autistic people in employment (including 2021 data from the Office for National Statistics indicating that just 22% of autistic people are in any kind of employment), it is clear that there is still a long way to go to ensure full inclusion for autistic people becomes a reality.
One important way to ensure fair access – both as regards the IP profession, and employment more widely – for autistic people is by championing role models. “If you can see it, you can be it”, and autistic people being open about their successes is a key part of demonstrating what autistic people can achieve, tackling negative stereotypes, and ensuring other autistic people don’t feel “ruled out” of anything because of their identity.
With this in mind, this Autistic Pride Day (18 June 2021), IP Ability has spoken to autistic IP professionals, allies working in IP, and a parent on the autism spectrum – discussing their experiences as autistic professionals, parents and allies, and how colleagues and employers can best support, and create a level playing field for, autistic people.
Meet the interviewees
Jonathan Andrews, Solicitor, Reed Smith and IP Ability committee member
Jonathan is a solicitor in the Entertainment and Media team at global law firm Reed Smith and a trustee of Ambitious about Autism, the UK’s national charity for young autistic people. He serves on Reed Smith’s LEADRS disability inclusion network.
He has achieved national and international recognition for his work to ensure fair access to the workplace for autistic, neurodivergent and disabled people, including being named the Law Society’s Junior Lawyer of the Year 2019, and the UK’s fourth most influential disabled person by the Shaw Trust in 2020.
Carly Jones MBE FRSA, autistic advocate
Carly is autistic, and mother to three daughters, two of whom are also autistic. She lives in Berkshire with her youngest daughter and assistance dog, Hunter.
Carly been involved in autism advocacy since 2008. In 2014 she became the first British autistic woman to address the United Nations. Carly assists various Government departments, including the Home Office and NHS immunisation board, and co-chairs the executive steering group for the Oliver McGowan Mandatory NHS Training. Her book “Safeguarding autistic girls, Strategies for professionals” is due to be released December 2021 by JKP.
Rianis Dickson, Patent Examiner at the Intellectual Property Office
Rianis joined the Intellectual Property Office six years ago, straight after graduating from the University of South Wales with a degree in Mathematics.
Rianis is autistic and dyslexic, but wasn’t aware of this until she was diagnosed as an adult.
Marianne Privett, Patent Attorney at AA Thornton, IP Ability co-lead and autism ally
Marianne grew up with siblings who had been diagnosed with learning difficulties at a relatively young age, but it was only in adulthood that her sister was diagnosed as being on the autistic spectrum. As the diversity and inclusion partner at AA Thornton, she tries to ensure the firm provides an adaptable and supportive working environment that supports diversity in all forms.
Autistic Pride Day – what’s it all about?
So what exactly is this “Autistic Pride Day”, you might be asking, and why does it matter? Marianne sets the tone for us, explaining that Autistic Pride Day provides a chance to focus on the positives of autism, moving beyond awareness and understanding towards celebration.
To Jonathan, the central message of Autistic Pride Day is that autistic people are different, not less – and that autism is a naturally occurring neurological difference and should be seen as such as opposed to being viewed purely through a deficit lens. “On a personal level, certain things are no doubt difficult, my autistic traits (including intense interests, dedication and loyalty) have certainly brought advantage in many ways – and so this is a message I wholly agree with and firmly believe must be highlighted and championed. At its heart, Autistic Pride Day is an annual celebration of that difference and of the many positive qualities we bring to society, and I would like to see it take its place alongside World Autism Awareness Day as a key date in all of our calendars.”
Autistic Pride Day matters to Carly because she is phenomenally proud of her autistic community, be they officially diagnosed, on the diagnosis pathway or self-identifying. “I am proud of those who were fortunate enough to get a diagnosis later in life then “coming out” as autistic and using their voice to champion others without that voice or position. I’m proud of those who may never get an official diagnosis, be that due to gender/identity stereotypes, lack of updated clinical understanding, race, poverty (a late diagnosis can be costly) or professional and family circumstances that mean it’s not safe yet for them to come out or seek diagnosis officially.”
Autistic people leading the conversation
Rianis confesses that she didn’t know about Autistic Pride Day until IP Ability asked to interview her for this article. “Having now learnt more about it, I think Autistic Pride Day is particularly important because it was created by autistic people. A lot of the conversation around autism is led by non-autistic people, so the great thing about Autistic Pride Day is that actual autistic people are leading the conversation.” Rianis doesn’t necessarily feel proud that she is autistic, as it feels a bit odd to be proud of something she has no control over, but makes the point: “I am proud of what I have achieved so far in life, particularly my degree and my job, and because I am autistic, I faced barriers that others didn’t in order to achieve these. For example, moving away to university and starting a new job both involve a lot of social interaction and communication, which as an autistic person I find very difficult and tiring.”
She adds: “I think that on Autistic Pride Day it is important that no autistic person feels ashamed that they are autistic, and no autistic person should have to hide that they are autistic, for example by not stimming in public or being forced to ‘mask’.”
Autism in the workplace – what it really means
Jonathan was completely open about being autistic when applying for a training contract at Reed Smith. “It’s certainly never held me back from being selected, from qualifying into my (fiercely competitive) department of choice (Entertainment and Media), or in my day-to-day work as a solicitor over the past coming-up-to-two years”, he says. “My experience is that the different skills this brings me are recognised and valued and I’ve always felt like I’ve been judged on merit, as opposed to autism being considered a deficit, something which might ‘hold me back’, or a reason not to be given a chance.”
Carly reflects that being open about autism has its advantages, but can come with its anxieties. “Disclosing I am autistic means I can access the reasonable adjustments needed in a role, but it also comes with a top-layered imposter syndrome of ‘was I picked because of my talents and abilities or was I picked as a box-ticking exercise for diversity stats?’,” she explains.
“The most important and kindest thing anyone has ever said to me at the start of an interview was ‘Carly, you’re here because you are talented, not because you are disabled’ I think every disabled/autistic candidate needs to hear those words at the start of every interview.”
Adjustments and advantages
When Rianis joined the IPO in 2015, she did not know that she was autistic or dyslexic. She recalls that she struggled with the office environment, and this meant she was not able to keep up with her work targets. “With advice from the staff counsellors and support from HR I was able to be diagnosed as dyslexic – which then led to an autism diagnosis. Having my autism diagnosis has helped me at work because we have been able to put in place adjustments to ensure I can work to the best of my ability. These have included: home-working, reduced output requirements, and preferred methods of communication. I use a Workplace Adjustment Passport so that I can easily share what I need with new managers.”
Rianis finds the office environment difficult to work in, with the multiple overhead lights and constant noise and movement of people overwhelming. “Working from home, I have been able to create a suitable environment,” she says. “I also find aspects of social interaction difficult at work. Phone calls are not a suitable method of communication for me – this is because I do not have enough time to process what is being said and work out how I am supposed to respond. My team makes adjustments such as giving me feedback in written format and sending me a message before they call so I know what to expect.”
Outside of work, being autistic means that Rianis struggles with social interaction and change of routine. “I can’t go to crowded places and I sometimes have a meltdown/shutdown if my plans change unexpectedly. When I go out, for example to the supermarket, I wear a sunflower lanyard , since starting to use this I have noticed that people are kinder and more patient with me.”
Although being autistic means that she struggles with things that others may take for granted, the differences in the way her brain works do have some advantages, she says. “I can think very logically and have good attention to detail. I use these skills every day in my job as a Patent Examiner.”
Jonathan also considers that being autistic has been an advantage in his life in several ways. “To give one example, it’s allowed me to hyper-focus on topics of interest, driving me to discover everything I possibly can about those areas and not rest until I’ve learnt all I can,” he says. This has proved very useful when it’s come to setting his mind to something and ensuring he achieves it, even where he needs to power through adversity in order to do so.
From awareness to understanding and acceptance
Because many people without first-hand experience of autism don’t necessarily have an in-depth understanding of what autism is, finding out that someone is autistic, or seeing “autism” on an application form, can cause them to panic, Jonathan observes. In some cases, this can lead them to shy away from getting to know the person or giving them a fair chance – not due to an anti-autism attitude, but simply due to fear of the unknown.
“This is where greater awareness is necessary in order to achieve greater understanding and autism acceptance,” he says. There still remains a great deal to be achieved in terms of greater understanding of the diversity of the autistic spectrum, and the different ways in which autistic people can contribute to society, says Jonathan, as well as understanding of the variety of challenges autism can pose, and the steps that can be made to alleviate many of the barriers that exist. The aim is for inclusion and acceptance, and not just awareness, to be made a reality, he says.
Marianne has seen her sister face misunderstandings from people ranging from colleagues to family members, including herself. “I’ve read up about autism to better understand how I should adapt my behaviour, such that the meaning of my actions is clear, and to find ways to prevent misunderstandings occurring or to address them once they have occurred,” she says. “I’m aware that my sister has to live within a world that isn’t designed to suit her, which can be exhausting. Hence I believe that allistic (non-autistic) people ought to do more to better accommodate autistic people, especially since some of the changes that might be made as a result could better suit everyone (the same goes for neurotypical people accommodating neurodivergent people).”
Rianis thinks that society’s understanding of autism is improving, however, there is still a stigma attached. “This means that many people do not feel comfortable disclosing their diagnosis or seeking an assessment for themselves or their child. Additionally, many people still don’t realise that autism affects adults (it is a lifelong condition) and the stereotype that autism is something that only affects white boys means that many people don’t receive support or a diagnosis.”
For Carly, understanding of autism is an ever-moving goal post. While great strides have been made since she first became involved in autism advocacy in 2008, autism is and remains the enigma of all enigmas. “We still have much further to go”, she says – particularly with aspects like user-led collaboration policy, and the safeguarding of autistic people. And as these milestones draw near, doubtless new questions will arise and areas of unmet need become apparent, she says: “highlighted, likely, by our ever hard-working autistic academics and progressive and open-minded autistic youth advocates, and that’s thoroughly exciting, for me and for our community as a whole.”
Becoming an ally is easier than you think!
Partly as a consequence of autism being poorly understood by the general population, many workplaces cause unnecessary stress for autistic people, says Marianne. This prevents them from performing as effectively at work as they would be capable of doing in a more adaptable work environment.
She recommends that colleagues and bosses read up about autism and/or attend training courses (preferably given by autistic people themselves), and consider how they can adjust their own behaviour to better accommodate and support autistic people in the workplace. “Thinking carefully about how an autistic person in the workplace might experience stress as a consequence of your actions, or as a consequence of established policies and procedures, then acting differently or making minor changes such that the stress can be avoided can make a big difference,” she emphasises.
Listen and learn, don’t assume
Jonathan thinks that being an effective ally is, crucially, about recognising that while you don’t personally know what it’s like to be autistic (or any other identity), you are happy to help based on what people tell you they need. “Taking careful notes of the adjustments (eg clear instructions), language etc that autistic people make clear would assist them or put them at ease is crucial. Just as crucial is not assuming that autistic people need help with absolutely everything”, he says. “The key question is not ‘what do I want to do to help’ but ‘what does this person need me to do?”.
Rianis says that some of the ways you can be an ally for autistic colleagues are the same things you can do to be an ally for other minority and underrepresented groups. “This includes educating yourself about autism for example by reading books, learning about autism from autistic individuals via social media, attending training and awareness sessions about autism, and listening to your autistic colleagues about their experiences.”
“If you feel comfortable doing so, you can also help to educate others by talking about harmful comments and behaviours, some examples of behaviours that aren’t okay are making fun of an autistic person’s stimming or special interests, or making comments such as ‘everyone’s a little bit autistic’,” she says.
While every autistic person will require different support, says Rianis, some examples of everyday support you can provide for autistic people in the workplace are:
- Be specific and avoid ambiguous language like metaphors and analogy
- Initiate conversations
- Do not be offended, or think they are not interested, if an autistic person does not look at you when talking
- Break down big tasks into small steps
- Ask closed questions instead of open ones (eg “Did you see your parents this weekend?” instead of “What did you do this weekend?”)
Carly advises letting the autistic person show you how they need and want to be treated – and when they do so, not undermining their reasonable needs or their personal self-advocacy. “Please don’t assume that someone who doesn’t say much hasn’t got much to offer on the subject”, she says. “Autistic people’s knowledge often outweighs their confidence. In the competitive working world, it’s often that a person’s confidence to talk about a subject outweighs their knowledge!”
Take emails and text communication with as much weight as verbal communication, she adds. “It’s so easy for us to not say anything when the other party is talking constantly. We may prefer to write down our feedback as a conversation.”
Give and take
Let’s not forget that there is a host of benefits that working with and being an ally for autistic colleagues brings. One in particular may appeal to many, in a commercial world often full of puff and bluster, or awkward indirectness. “You get honesty from us,”, says Carly, “you get a critical friend who values transparency and project success over agendas and personal gain. Recognise and treasure that wisely”.
A note about:
Parenting and autism
Carly is autistic herself, and also a parent of autistic children, which she says brings many waves of emotions.
“For the sake of my now grown-up children, who deserve to have their own experiences respected and private, I’ll categorise those many waves into two broad pools”, says Carly:
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- The gift of hindsight. Hindsight, if it could be bottled and sold, would be the most expensive gift you could offer, Carly reflects. “Hindsight gives us insider knowledge of how and when to act to get a different outcome. I feel as if sometimes the 32 years I lived autistic but undiagnosed were a rehearsal to ensure that my autistic daughters had someone to help them have a thoroughly different and more advantageous life experience. As a mother, that’s a huge gift.”
- The curse of knowing too much. “You look back on the sad, negative and at times traumatic incidents that growing up autistic without that understanding can bring and you look then at your child and fear history repeating itself”, explains Carly. “I think that’s really why I went into advocacy when they were tiny – the fear of not breaking the cycle for them and for many other autistic girls. I wanted and still want to plant dock leaves amongst the ever-growing stinging nettles out there.”