Interview by Maura Campbell, Spectrum Women Senior Editor and Features Writer
Finn Monaghan is a Northern Ireland based specific learning difficulties teacher working as a freelance Autism and Dyslexia Tutor and Disability Needs Assessor at Queen’s University Belfast and Ulster University. She received a late diagnosis of Asperger’s Syndrome, aged 38, and the impact of growing up without a diagnosis inspired her to write a book to help autistic teenagers recognise their own individual spectrum of autism.
Maura: Why did you think a book like this was needed?
Finn: I found it difficult to grow up with undiagnosed autism and the relief that came with a diagnosis was immense. There were so many of my negative experiences that could have been different had I known that I was autistic and how to perceive things rather than let all the confusion build up into eventual depression.
My own diagnosis led me to research as much as possible about autism and then I had to figure out how autism presented within me. It took me a long time to find out everything I needed to know about autism and piece it all together until I truly understood myself in a way I had never had the opportunity to do so before. It was life-changing for me and through my own experiences I appreciate how essential it is for young people to understand their autism.
I find it helpful to break things down to get a deeper understanding which led me to develop the format of this book. I hoped to make the process of self-discovery more manageable and enjoyable too. I also wanted the book to act as a way of giving a voice to those who may not have the ability to express their needs as expected. I find it hard to let other people know what I am feeling or tell them about my experiences which I now understand to be aspects of my autistic traits. At many times in my life I have been left quite isolated through not being able to make friends or ask for help or not actually realising that I needed help. While on the surface I may have appeared to be fine and able to technically speak quite often I have had significant difficulties and been unable to communicate them. That kind of hidden barrier is reflective of many people’s autism and it can have serious consequences. I really hope that the book will help to bring out those stories that may otherwise not get told and ensure support is given when needed.
Maura: Who is the target audience for your book and how should it be used?
Finn: ‘Know Your Spectrum!’ is aimed at teenagers approximately age 12-18 though it depends on the individual as we all develop at different rates. The book offers a template for the teenagers to figure out what their spectrum of autism is. I outline my own autistic traits and experiences using a series of questions and responses which are further explored through poems, mini-stories and narratives or a few simple thoughts. The intention is that a range of writing styles can be used to ensure everyone can find a way to express themselves in the way that suits them best. The teenage reader can then complete their own worksheet to write about their autism and life experiences so far. Throughout the book the teenagers have the opportunity to work out strategies to either enhance their strengths or overcome their challenges.
The book can be completed by the teenagers on their own or with help from parents or teachers. It can also be run as a seven week course by teachers, counsellors or anyone working with autistic teenagers. There are additional activities on the website knowyourspectrum.com to support anyone leading or taking part in the course. By providing a safe space for the teenagers to come together I hope they get the chance to make friends and develop a support network of other teenagers who are just like them.
Maura: I loved that you tackled the issue of executive functioning early on in the book, since this is an area that I feel is often neglected. Why did you decide to lead with this topic?
Finn: Executive functioning is the basis of everything that is stressful in my life!! It causes me a huge amount of stress and frustration through trying to be organised, remember things or, even worse, start and stop doing things! It is such a crucial skill to develop and often a key aspect of autism and I agree, it does not get as much attention as some other topics. It felt like a natural starting point as it explains our rigid/focused cognitive thinking style which can influence a lot of other autistic characteristics. I am on a lifetime mission of mastering executive functioning skills and creating a sense of calmness that I continue to, very slowly, work towards!
Maura: You talk about how one of your social strategies is having a ‘social anchor’. Can you explain a bit more about what that means?
Finn: I think it is similar to the mirroring that autistic people can do. When we know someone we tend to pick up their traits and, to an extent, form an identity around that person. I have always watched and copied people and I am often reluctant to attend anything without having someone there that I know well who I can speak with and don’t have to worry about what to say next. I guess it is just a way of leaning on a friend for support socially as I struggle with speaking quite a lot and it is a major source of anxiety in any social setting.
Maura: You used a term I’d never heard of before – ‘sensory agnosia’. What is this and what strategies have helped you personally in dealing with it?
Finn: Sensory agnosia describes the process whereby we have a complete shutdown in our ability to process the meaning of words or anything that is happening. At the same time, we would still be able to continue seeing or hearing and moving our bodies but without any real understanding of what we are doing or what is going on around us.
I have found that this affects me when I am really exhausted and I reach a point where I am still functioning on the surface and operating on auto-pilot but underneath my thoughts and feelings are numb. Though I would simply appear to be quite distant, irritable or cold. Friends have commented that the ‘shutters’ come down and I am effectively gone. I completely switch off as it is the only way I can cope when I get to that stage.
This has been something that I have really struggled with and it has caused a lot of problems with family who, like myself, did not understand what was going on. I am quite good at controlling this kind of thing now and it does not have as strong an influence as it once did when I was younger which I think is due to learning how to take care of myself and recognising when I need to stop and withdraw.
Maura: You talk about needing to strike the right balance when enjoying routines and intense interests. How can a young person tell when the cons are outweighing the pros?
Finn: I know from my experiences that I have a tendency to do things with an ‘all or nothing’ approach. Once I have a routine or interest I am quite happy to follow it without ever stopping or changing and I think that is fine! But I also know that I have had a lot of trouble with this tendency to overdo things and I feel it is something that we all need to take care with whether we are autistic or not. For a teenager who is just starting out in life it is essential to develop that awareness early on to help ensure that activities or interests remain a positive force. Identifying when things are beginning to take over to potentially become a negative can be difficult.
I would feel that the biggest warning sign for a young person to understand when things are getting out of control would be that they are turning down invites to do other things or planning their life around certain activities to the exclusion of everything else. Once a routine or interest becomes a constant priority then it is likely a bit of balance is needed.
Maura: You’re very honest in the book about the types of things you find challenging. Did you find it hard to write about these or was it a cathartic experience?
Finn: I found it quite easy to write about them and in some ways it was cathartic. It gave a sense of acknowledgement to write about seemingly minor incidents that have had an impact that I can still feel today. As an autistic person there are endless minor interactions or experiences that all pile up into an overwhelming sense of failure or perhaps guilt at not getting things right or always being the odd one out…. It felt good to put some of those memories onto paper and share them. Hopefully my stories will help the teenage readers to feel a sense of connection and begin to process and deal with anything that is bothering them or recognise their strengths and learn how to build on them.
Maura: What is the most important point you’d like autistic young people to take away from this book?
Finn: That their autism is unique to them and however they define themselves is what matters. No one else knows us as well as we know ourselves. No one can understand what is means to be us. The only way we can live a life that is free and feel comfortable in ourselves is by discovering who we are and learning to accept everything that is part of us while continuing to grow through our experiences. Being the person we truly are is the most important thing we can do.
‘Know Your Spectrum!’ is an innovative, insightful and extremely practical guide for young autistic people which will empower them to embrace their neurology, develop their own strategies and learn how to self-advocate based on their personal spectrum of autism. It is a much-needed resource.