Meet Oli Monks. His younger brother, Nicky, has autism and Chron's disease. As a social entrepreneur and autism advocate, Oli has lent his voice to a TEDxTalk and Huffington Post article about disability inclusion. And in this profile, he shares more about his experience as a sibling and founder of Place with Purpose.
Tell us about yourself.
My name is Oli Monks and I’m from Bedford, just north of London — to anyone who isn’t from the UK! I’m 24 years old and a graduate of Lancaster University, studying Management and Entrepreneurship. I have been involved with autism charities in the UK and have just founded Place with Purpose, an organisation set up to facilitate employers and the autism community in the workplace.
How did you become involved in disability advocacy?
From what I have experienced, my motivation in becoming involved in disability advocacy is similar to many others: a personal connection.
I have younger brother, Nicky, who is autistic and has had the extra complication/challenge of growing up with Crohn’s disease. Growing up and witnessing first hand not only the intense challenges Nicky has faced, but also his great strengths and traits, gave me real passion for advocating on his behalf, and advocating for the many autistic and disabled people I’ve had the privilege to meet and hope to meet in the future.
After setting up an autism employment project in Lancaster, I had the opportunity to give a TEDx Talk to share Nicky’s story. Since then, I have been able to contribute to different bits of disability advocacy — I’d like to do a lot more in the future, though!
Ultimately, the most powerful advocates will always be those with a disability themselves but any extra voices and perspectives that can be shared I think for the best — another reason why this autism articulated blog is such a good idea!
In your TED Talk, you explore the meaning of the word “normal” and your younger brother’s experience with autism and Crohn’s disease. What challenges did your family face with your brother’s diagnosis, and what support systems were most valuable along the way?
When I was growing up, my parents shielded me from autism to an extent, at least until I was around 13. We were at least lucky in that Nicky’s diagnosis came relatively early on his life.
I think from my family’s perspective, the toughest challenge was a lack of understanding of what autism is and as a result, in understanding who Nicky is and how he was experiencing the world. As a family, one of the first things you try to do is seek any stories or examples that show you aren’t alone and to learn how other people have coped and dealt with those challenges.
Like many families and especially Mum’s, my Mum took on the challenge of becoming an self-taught expert in the topic and read as many books as you could possibly read — we’ve still got them all in a big bookcase at home!
There is national support out there through the National Autistic Society which was very helpful to have, as well as many local branches and organisations which play just as valuable a role in support for families and the autistic community.
I’ve read that there is some connection between autism and issues of the gut but nothing really substantiated as of yet, so we haven’t had the benefit of knowing there are many similar situations for families here in the UK or elsewhere when it comes to being autistic and having Crohn’s disease. If there is anyone who happens to read this, please do reach out!
What is your relationship with Nicky like? Has it changed over the years and how do you imagine your relationship in the future?
Well the short answer to that is Nicky is the best guy that I know, so I couldn’t ask for any more from a brother.
Thinking about it, our relationship has changed a bit over the years. There’s a 7 year gap, which feels like a lot while you’re in the teenage years. I was almost a “3rd parent” at times if that’s not too bold a way of phrasing it. Nowadays though, as Nicky grows up — he’s 18 in April — our conversations and interests have changed. I want to help him as much as I can to lead the life that he wants to and be as independent as possible; it’s what he wants and I’ve got a lot of faith in him that we can get there.
One of my ambitions with Place with Purpose is to employ Nicky or help him find a great role, which would be amazing.
Given the many misconceptions about individuals with disabilities, how can our communities and workplaces become more inclusive?
There is definitely a two-way responsibility here; individuals with disabilities can certainly help demystify a lot of things and give friends and colleagues more insight into how we can be more inclusive.
One phrase used a lot, or at least here in the UK, is "reasonable adjustments." It’s important we break down this fear in communities and workplaces that somehow individuals with disabilities require big, awkward changes. Actually, it’s often the opposite. Many of the iterations required in the workplace or within a manager/staff relationship require little resources or time: I wrote more about it in a blog post for the Huffington Post late last year.
In short, I think we need to create as many opportunities for individuals with disabilities to engage with their communities and workplaces and help to facilitate those conversations. I have every faith that the more of those conversations that can take place, the more we’ll benefit from a more inclusive society.
As an advocate for disability employment, we’d love to know – what advice do you have for adults on the autism spectrum who are pursuing opportunities for employment and professional development?
Great question! First of all I’d start by saying that prospects for adults on the autism spectrum in pursuing employment are improving. If only in small ways at this stage, I really want to stress that to people.
I would encourage autistic adults to focus on what skills they do have, what are their strengths, and just as importantly, what do they really enjoy doing. When looking for jobs it can become very easy to fall into the situation where the focus is on what you can’t do, which can quickly make the process feel difficult and negative.
I would also say seek out the support that is out there, because it is out there! Whether it’s charities like the NAS or Ambitious about Autism who have great resources, local council support, or across different careers websites.
This is just as true if you are in employment already —seeking out support and developing a good set of communication rules with your manager and colleagues will mean you have people who understand you and what you would like to be achieving within your role and professional development.