A Q&A with Aoife Dooley

A Q&A with Aoife Dooley, author of Frankie’s World, award winning Illustrator and comedian from Dublin, Ireland.

Aoife shares with us her experiences of being diagnosed as Autistic at the age of 27, and how a diagnosis helped her to truly understand herself.

Thank you Aoife for taking the time to answer our questions. 

1) We have many girls and women in our Facebook group (8.9k members) who have been recognised as autistic quite late in their lives, and it has been life-changing for them. What was your experience?

It was definitely life changing for me, too. It felt kind of bizarre in a way – I’d wondered all my life why I struggled with certain things, why I behaved differently to others, and why I found social situations hard. When I got my diagnosis at 27 I could finally begin to understand myself and in turn it helped others close to me to understand me better too. It was a relief to know I was not alone.

2) What gave you the idea for Frankie’s World and why did you decide to create it in this format?

Frankie’s World is loosely based on my own experiences growing up and finding it difficult understanding why I felt so different. I was a reluctant reader but enjoyed reading comic strips in the local paper when I was a kid so I wanted to create something visual for that reason.

3) You have called Frankie’s World ‘a love letter to being different’. How easy has it been for you to embrace being different and how would you help a young person to be able to accept and embrace their differences when it may make them stand out?

I liked being different, I just didn’t like how people treated me for being different so that made it hard. I loved metal music and dressing in all black and even though I stood out in that way, I still tried to blend in. I think when you’re young, it can be quite difficult to be yourself a lot of the time. There’s a part of you that really doesn’t want to care what others think but it is hard to internalise those feelings sometimes. For me, it was learning to love myself and accept who I am. I think one of the big things I learned was that you are not the things others say you are. The only thing that matters is what you think of yourself.

4) Do you wish you had been diagnosed earlier? What things might have been different for you if you had been diagnosed before secondary school, for example?

Yes, I think it would have been helpful to know. In school I was sleeping a lot, and when I wasn’t sleeping I was bored (and when I was bored I would act like the class clown) and that would get me in trouble often. I felt like I was really trying and everyone around me thought I was barely trying. I think I was overlooked and had to find my own ways to cope (and I think drawing was one of those things). It would have been great to be able to understand myself a little better at that age because I definitely blamed myself about things that weren’t my fault and now looking back as an adult I’m proud of those differences or things that I tried to hide that I didn’t understand at the time.

5) How did you decide what you wanted to do with your life and how easy has it been to carve out a career?

Drawing for me was therapeutic and I knew I wanted to do something creative when I was older. I didn’t have an interest in anything else. By the time I got to college I was studying graphic design and created zines and books based on where I grew up. After college, I worked as a freelance illustrator and it wasn’t easy getting started, but putting myself out there and creating work that I enjoyed definitely helped me to gain confidence and enter exhibitions where I would meet people and network.

6) What advice would you give young autistic girls reading Frankie’s World?

To know that you’re not alone and that it’s ok to be different. Also, that being kind can change someone’s life! It feels like a cliché thing to say but I can’t count the number of occasions that someone else’s kindness impacted me immensely and brightened my world. It’s a very simple thing that everyone can do.

7) Finally, is there any advice you would give to adults who are caring for or working with girls?

Speaking from my own experience I think to support special interests. Listen. If you see someone struggling do try to help. I would have really liked an adult to understand how I was feeling in school and reach out to me or my parents at the time. I have been hearing in recent years though this has been happening more which is great. I think that it can only help kids to understand themselves better and those around them too.

Find Frankie’s World alongside many other recommended books, links, Youtube channels and apps on our resources page. 

The publishers Scholastic have very kindly given us a copy of Frankie’s World to giveaway. In order to be in with a chance of winning, please enter your email address below. 

Giveaway closes March 7th 2022 at 23:59.

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Aoife Dooley, Author
Credit Ruth Medjber
Frankie's World

An Autistic Friendly Christmas

autistic friendly christmas

It’s a fact that Christmas can be difficult for autistic people. This is nothing to do with not wanting to celebrate, or not wanting to get presents, or not liking (stimmy!) Christmas lights. It’s because an autistic person’s idea of what constitutes fun may be different to yours if you aren’t autistic. And that’s difficult when your idea of fun is seen as ‘tradition’ and what ‘must’ happen at Christmas. I’m going to be asking you to open your mind to the possibility that Christmas can be different, and that’s perfectly OK.

I love Christmas. But I will be honest with you, the Christmas experience I have now is very different to the Christmas experience I had 10 or 20 or even 40 years ago. And that’s fine, because it’s the Christmas experience we have figured out works best for us as a neurodivergent family. We are lucky that we have a lovely and understanding extended family too, who don’t put pressure on us to conform to a stereotypical idea of what Christmas should look like.

When thinking about Christmas for your neurodivergent family, there’s no SHOULD involved. And your ideal day/week might very well look quite different to that of another neurodivergent family. And that’s OK.

You can donate here to help us in the work we do to support both autistic girls and women and their extended families at all times of year.

Why can Christmas be difficult for autistic people?

Christmas in Western society is considered to be a very special time, a national holiday with huge expectations round it, and definitely happy families spending time together. But the image of Christmas we have today, of bulging sacks and stockings and a huge roast dinner on the table, has only relatively recently become the default, and lots of countries have quite different traditions too. This social expectation can feel quite false and performative to neurodivergent people. Why is this the way it ‘should’ be? Who said so?

Christmas brings change, and for autistic people, uncertainty = anxiety. This is especially true of autistic children and young people who aren’t involved in the planning at home or at school. While there may be Christmas traditions that your children learn, life in general is all a huge change from December onwards – different activities in schools (including pressurising and demanding activities such as school concerts or nativity plays), Christmas music and completely different aisles of goods in shops, and people making demands about gift decisions.

Christmas presents themselves bring uncertainty. What is under that wrapping? Will you like it? Will you be expected to perform the social function of pretending you like it when you honestly don’t care about it at all? Magnify this for a whole sack or stocking of presents. Not all children will feel like this, but if your child wants to decide exactly what they want for Christmas, don’t insist on surprises. The surprises are for your benefit, not theirs. Don’t make, or allow someone else to make your child unwrap presents with a whole room of eyes on them – that’s a very uncomfortable experience. And some children (or adults come to that) do better with presents not wrapped at all or with a small hole in the wrapping so they can get an idea of what it is.

Christmas dinner is another big change, and there is often huge pressure to sit at the table for longer than usual (if it’s usual in your house) with extra people and different food to normal. Parents might also feel pressured to make it a special dinner, and for it to be perfect. There’s an expectation that Christmas dinner edibles can be chosen from a very limited checklist of roast dinner and puddings. But autistic people might hate Christmas dinner, or the pressure of it might be just too much on top of everything else that’s different on Christmas Day. Add crackers and hats and other sensory nightmares, and Christmas dinner might not be the special occasion for your child that you want it to be – it stands out for all the wrong reasons. Do everyone a favour – be open to the idea of pizza for Christmas Day if that’s what your child wants. You don’t have to eat it, but nobody is harmed by them eating it, without comment or judgement.

Which brings me to the elephant in the room – extended family. This is going to be different for everyone. We all have our family traditions, but at Christmas they often involve sitting down at a table with people you might not eat with very often. Those people may not be as understanding as you about your family’s neurodiverse needs. They may have expectations about behaviour and traditions which don’t fit so well with you anymore and which may cause your child to have a miserable day. If this is the case, try to educate and explain beforehand, but don’t be afraid to put your own little family first. 

How can you help?

Talk it over with your child. Try to find out whether they love or loathe Christmas, and why.

If you can discover triggers, you can change things so they don’t occur. These could be anything from opening presents or having dinner with distant relatives, sitting at the dinner table hearing people eat or long hours expected to socialise with extended family because it’s a ‘special’ day. They may wish fervently that it was a ‘normal’ day! But they may not, so personalisation is key here.  The same applies if you are an autistic adult; make sure your family are aware of your needs and how they can best help you enjoy the day.

Try not to go overboard with surprises. As with everything else, prepare your child for what’s going to be happening.

Don’t overstay a welcome and ask your guests not to do so either. Better to have a fun few hours rather than a miserable many hours.

Build in chill time either side of the big day. It’s going to be exhausting.

Don’t make a fuss if your child or family member wants to spend time on their own in their room. This may be necessary to avoid overwhelm.

Don’t put the weight of your – or anyone else’s – expectations about Christmas on your autistic family member’s shoulders. This should be fun – whatever someone’s idea of fun is.

And have a lovely Christmas – however you want it.

Cathy Wassell is CEO of Autistic Girls Network, author, Masters student and proud parent of a fully neurodivergent family.

You can donate here to help us in the work we do to support both autistic girls and women and their extended families.

For newly diagnosed Autistic young people

By Emily.

I spent nearly 17 years of my life with no idea that I had a completely different neurotype to the majority of people around me. I thought my brain was ‘typical’. After all, I seemed to blend in with my peers. But ‘blending in’ with your peers does not mean your brain is ‘typical’.

Growing up undiagnosed meant that I had to hide the fact I found a lot of things difficult, because I thought it was my fault that I found stuff hard. I thought I was the failure, not that the system around me was the one failing me.

The system stuck labels on me which were hurtful. Like being told I was ‘dramatic’, ‘sensitive’, ‘hysterical’, and had a personality disorder when I didn’t. It meant my difficulties were viewed through inappropriate lenses and I was given inappropriate support.

It meant that there was never any chance for me to have my needs met, not that having a diagnosis would have necessarily enabled this anyway. But it took that chance away and left me to blame myself for everything I couldn’t seem to do quite like everyone else.

When I opened up about certain things, people replied with “that’s normal”, “we’re all like that” and “you’re just being overdramatic”, leading me to come to the conclusion that everyone must experience things the way that I did, just I was useless in coping with those things.

I grew up believing that there was something fundamentally wrong about me. I knew that I didn’t seem to fit into the world, and because I couldn’t pinpoint why, I believed it was ME. I came to the conclusion that leaving this world was the best option.

It meant I was more vulnerable to mental health problems because of the exhaustion from masking and not understanding what was wrong with me. And so I attempted suicide numerous times, spent months in hospital and was sucked up into a system which didn’t recognise my needs.

Not being diagnosed meant I never had the chance to access support which could help. I wasn’t introduced to my SENCO at school until my final year of sixth form, when I was diagnosed. So within one year she helped me with things I should have had help with from the age of 11.

Of course, those diagnosed young face their own different barriers and difficulties due to being diagnosed. Early diagnosis is not always a privilege for everyone. Support and acceptance often is non-existent.

But in my case, I really do wonder whether 16-year-old me would have been sat in that hospital, terrified and away from everyone and everything she knew, if the reason for her feeling so out of place had been explained to her years before. If those years of developing my own maladaptive coping strategies and harming myself to try to cope with the world I felt so overwhelmed by hadn’t left me so utterly defeated. If instead those years had been spent by me learning the things I can now learn, setting boundaries for myself and realising that I don’t have to function the same way as people with a completely different neurotype do.

My learning began just after my diagnosis. Learning that I can’t hold myself to impossible standards for the rest of my life because I will burn out repeatedly and learning that I have autism-specific needs that I cannot ignore or rock bottom won’t be far away again.

I wish I could have grown up knowing who I was, or at least knowing years before I did. I know it may not have taken the pain away and I’m sure I’d have had a completely different journey with self-acceptance, but still, that bitterness that comes with late diagnosis remains.

To newly diagnosed autistic young people…I want you to know that you were never the failure, you were the one who was let down.

I want you to know that holding yourself to neurotypical standards when you are not neurotypical is impossible.

I want you to know that it’s okay to be angry, sad and upset with the world and at adults for not picking up on it. It is also okay to be upset with your diagnosis, or incredibly relieved. There is no wrong or right way to cope with finding out you are autistic.

You know now. It’s taken a long time, but now you know, and you have all the time in the world to learn what ‘autism’ means for you. You can ignore it for a while, if you like. You can jump straight in and read as much as you want to. You can claim your autistic identity and shout about it. Or you can keep it quiet. How you choose to cope is up to you. You will see lots of people telling you what is best, or what has worked for them, but only you know what is best for you. It might take you a while to get your head around the news that you are autistic, and seeing your whole life suddenly through a different lens can hit hard.

Look after yourself. You can begin to start deconstructing those incorrect labels and the hate you’ve built up towards yourself. You can begin to learn who YOU are, and YOU are an incredible human being.

Emily is a Trustee of Autistic Girls Network and, as a young autistic woman is a passionate mental health activist and autism advocate. You can find her blog here or join her 29k strong Twitter following.

Alexithymia and Autism

alexithymia

By Emily.

Most people know when they are feeling a certain way. They can identify that certain feelings in their bodies indicate certain emotions. They would recognise if they had butterflies in their stomach and would understand that this meant they were feeling nervous. But what if you didn’t know what you were feeling and why? Imagine the confusion you would feel.

The concept of alexithymia was introduced by Sifneos in 1973. The term itself literally translates to “no words for emotion” in Greek. In today’s language, this means that someone has difficulty identifying and describing the emotions that they are experiencing. Although some non-autistic people have alexithymia, it is much more common amongst autistic people. In-fact, recent research by Kinnaird, Stewart and Tchanturia (2019) found that only 4.89% of the non-autistic people in their sample had alexithymia, compared to 49.93% of autistic people. This makes sense when we consider the difficulties many autistic people have with understanding emotions, processing what is going on in their bodies and identifying different bodily needs.

Alexithymia is closely linked with interoception, the ability to identify, understand and respond to the state of the inside of our body. For whatever reason, many autistic people struggle with this. It’s this interoceptive awareness which allows us to feel things like hunger and thirst, and identify whether we are hot or cold, if we need the toilet and if we are in pain. Difficulty recognising these needs can make our daily lives much harder to navigate.

Everyone who experiences alexithymia will have varied experiences. Some can feel specific emotions, but struggle with certain ones. For example, they may find anger or sadness very easy to identify, but may be unable to feel or recognise what happiness feels like. Some understand that they are feeling something, and may even be able to tell whether it is a positive or negative emotion, but are unable to pinpoint the emotion itself. Additionally, emotions can get confused with each other. For example, in the past I have felt anxious, and only later realised it wasn’t anxiety I was feeling, but excitement. As you can imagine, struggling to identify these emotions can be really frustrating.

If you think about it, an emotion often produces a need. If I am sad, what I need to feel better is to curl up under my duvet and have a bit of a cry, then move on. If I am happy, what I need is to stay in that situation and enjoy whatever it is that is making me feel happy. But, if I did this when I was angry, without me realising it, the emotions could build up and I could have an outburst. What I need when I’m angry is to leave the situation temporarily. As you can see, not recognising or understanding the emotion being experienced, means we can’t deal with it effectively, and over time this can cause problems with emotional regulation, interpersonal effectiveness skills and relationships.

Alexithymia isn’t only about recognising emotions though. It can also be about how we experience the emotion. It can be hard for us to match our body language or facial expressions with the emotion in the way we are expected to. We may have to intentionally act out our response, remembering that if we are happy, we have to show it through our face. You know the myth that autistic people don’t have emotions? That’s why it exists. Because some of us don’t portray emotions the way we are expected to. But, this doesn’t mean we aren’t feeling anything. Many of us often get asked why we look angry or sad, when in-fact we are happy. Or we may be asked why we look happy when we are observing something sad. Ensuring that our outward self reflects our internal emotions, even when we struggle to know what these are, takes a lot of work, and it can leave us exhausted.

It can also be hard to interpret other people’s emotions, which can cause difficulties in our relationships. I have a tendency to look at someone’s face and think they are angry, even if they’re just concentrating. I look at a facial expression and I just see a face. The emotion doesn’t come with it. A study by Geoff Bird found that usually people with alexithymia can tell that there is a difference between photos of someone smiling and someone frowning, but they can’t tell which photo is of them smiling and which one is of them frowning.

Whilst alexithymia can cause a lot of difficulties, I have also found it to make me less judgemental. Because I struggle recognising facial expressions, I always ask how someone is feeling, rather than assuming. This tends to open up a more honest conversation. However, alexithymia also means I struggle knowing what my needs are, which makes it much harder for me to get my needs met. This is where I may need some support!

Emily is a Trustee of Autistic Girls Network and, as a young autistic woman is a passionate mental health activist and autism advocate. You can find her blog here or join her 29k strong Twitter following.