Promoting a better understanding of mental health has been the theme of my blog recently and this time I’m writing about Asperger’s. There is a character in LETHAL TIES, (my debut psychological thriller) who has the condition: AS often affects more males than females, so it seemed more natural for this person to be a boy. Connor is fostered, yet there is something unique about his character.
Handling various themes behind this book, I have concentrated on the human element. I’ve shared important facts about my two main characters, Joe and Maisie, their personalities, their back stories and the struggles that affect them in adulthood. Connor however, is still a teenager.
WHAT YOU NEED TO KNOW ABOUT CONNOR
- The truth about his parents is kept a secret, as both are considered to be psychopaths with no compassion for others.
- Connor’s birth mother (when released from prison) did not bond with him and cruelly rejected him.
- So Connor has been in and out of care homes since infancy.
- He has been in various foster placements, none of which were successful.
- He is later diagnosed as being on the autistic spectrum.
- But two people tirelessly campaign to foster him to give him a chance.
Connor is not central to this novel and features very little. He is none-the-less a significant character who plays a vital role in the climax. With much of the emphasis on childcare and fostering, it is the way people bond with Connor, as well as his developing personality (as he gradually lowers his guard) that adds an extra string to this story; how youngsters are perceived and treated, especially those raised in care.
A Real-life Story about Asperger’s
With this in mind, I would like to focus on a real person (as opposed to my fictitious character), someone who is close to me but who I had the pleasure of interviewing a few weeks ago, particularly about growing up with Asperger’s. Being on the spectrum is not exclusive to males. Females too have the condition and although the core characteristics of Asperger’s does not differentiate between the two, it can affect them in other ways.
Here is Rose’s story
Born in 1999, Rose began her early years a happy little girl at the March School in Lavant where she made lots of friends. Things changed, however, when she went to High School; an experience that sparked a journey of self-discovery.
I began by asking her what happened there, and it emerged she had endured a spate of bullying.
Starting secondary school
“Girls are generally catty, especially at that age, but quite often things passed over my head. I felt isolated because I didn’t really understand myself. It was a big period of adjustment and I didn’t know who my friends were. I didn’t understand the jokes they made, why they could be a bit cruel, or how to cope in a friendship with anyone. My primary school friends were in separate classes and making new friends, but I found it really difficult. I was constantly self-conscious which can make you feel insecure and the smallest comment will stand out to you.”
I too was bullied in lower school and remember how it felt. But I was curious to know how she dealt with the situation.
“I didn’t feel I fitted in, so I left school. This was my decision and it worked quite well for me because it was in that period I was diagnosed with ‘Asperger’s’, so it was just a year to get my head together a bit. Time to figure out coping strategies, understand myself and other people to get that confidence back. But by the time I returned to school, it wasn’t as scary any more.”
Research
Looking online, I found a list of symptoms on Medical News Today which almost echoes this:
- Jokes, sarcasm, and irony may cause distress and confusion.
- The person may have a highly literal interpretation of the world.
- Irony and humour may be difficult for them to understand, leading to frustration and anxiety.
Going back to Rose’s diagnosis, I asked her what insights she got from her assessment.
“I wondered if I might have Asperger’s. Then we watched this one short documentary as a family and everyone looked at me and said: “that sounds like you.” This was diagnosed in one sitting, which does not happen with girls. The majority are mis-diagnosed or not diagnosed, but because I was at that critical age (joining High School) it seemed to fit the framework and they thought, yep, you’re definitely Aspergic, high-functioning, but it’s not necessarily going to hinder your life.
I remember at that time I was very, very rigid. Like if anything changed, even for the better, I wouldn’t be able to compute it and it would trigger a weird panic! When I understood that I wasn’t just being a brat, I wanted to work on the side I thought was negative. With a year out, in my own little bubble, no interferences, I sort of got myself into the right headspace to make the most of my situation. To try and not lean on it and think well, I’ve got this diagnosis, which means I can be a twat and get away with it… more the opposite. I can work on myself and I will. Yeah, I was definitely in a better place to go back to high school when I did.”
Reactions to stressful situations
When she was in her own little bubble, with her own routine, without anyone coming along and changing anything, it made her feel safe and in control. But I wondered if she could remember a scenario that triggered a panic response.
“When I was very young, we were going for lunch next day at Gun Wharf and I can’t remember where I wanted to go but had it in my head we were going there. But when lunchtime came, they wanted to go for tapas and I absolutely lost it! Like it was so unjust and so unorganised. I had already planned what I was going to have and it felt almost robbed from me. But I soon learned this was only going to upset me in the long run and those I was with. It was somewhat difficult when you had someone kicking off like I was in that situation a few years ago.”
At home or with family, she was more likely to release bottled up emotions through meltdowns, another symptom mentioned in the article on Medical News Today. But how did she feel once she returned to the school environment?
Friendships
“I’d be grateful for any friendships really. Friends were a good influence in many ways and helped me build my confidence. I am quite trusting. There was a period of time through secondary school and college, when everyone would constantly describe me as being ‘too nice’ and ‘a pushover.’ I didn’t like people saying that. Being called ‘kind’ is a positive thing but everyone took me as a proper ‘people-pleaser’ and constantly singing the praises of me doing anything for anyone to fit in… Yet if I was ever anything but amenable, I’d be made to feel like I was being unreasonable.”
In other words, whenever she felt like being assertive?
“These people were tactical bullies. Bullying is not the sort of thing that gets to me, it goes over my head because you don’t necessarily care about that person or their opinion. It’s people who are close to you who tactically and emotionally abuse you. Its also camouflaged, like it will go on for years before you realise that person is not a good influence. With this one particular friendship, I felt it for a long time but every time she complimented me it was a back handed compliment – even things that sounded caring, there was an underlying threat. Tactile, manipulative stuff – it was clever and it was bitchy – proper narcissistic behaviour. Eventually there was a turning point when I didn’t like her any more. I felt on edge and she demanded so much time. Genuinely nasty people latch on to you, play the whole best friend card but its not what a friendship should be, i.e. someone you can talk to, have a laugh with.”
I was sad to hear this, it seems to reflect the classic social isolation suffered by those with Asperger’s; difficulty in developing social skills, making and keeping friends. Like males, females on the spectrum are likely to experience bullying, which may manifest itself differently based on gender. No matter how subtle or overt, exclusion and bullying can be profoundly traumatising and affect the self-confidence and sense of security of the target individuals.
I asked her what strategies she had devised to avoid stressful situations.
“One thing with Asperger’s is you’re also likely to suffer from anxiety and depression. I developed a ritual, (which I’ve managed to shift now). When I tried to get help for it, they said, ‘if you didn’t have a diagnosis of Asperger’s you’d now be getting a diagnosis for OCD and this is just another symptom,’ but put so much stress onto one tiny thing. This one tiny ritual, it was ridiculous really. I remember once, I was talking to a professional (I think she was meant to be an OCD therapist) but with these rituals, you attach to something to them; like if I don’t follow this ritual, something bad will happen, like my family is going to die… So I would touch wood. I would touch it in a certain way. If I tried to stop myself from doing it, I’d think well, what if I don’t do it and something bad DOES happen? It’s easier to just do it! Yet this therapist looked at me in the most condescending way and said ‘how long have you been keeping your family safe then?’ I thought fuck off, you should understand, and I know it’s not fashionable, but that pissed me off so much.”
Stopping a ritual would have been a big deal for her, since it is reported: ‘People with AS may have rules and rituals that they methodically maintain to reduce confusion. A surprise change in routine can sometimes cause upset or anxiety.’
Still on the subject of anxiety, I was curious to know what other interests/obsessions she had i.e. what brings her comfort or makes her feel happy.
“Listening to music, walking the dogs. I really like walking the dogs on my own. I put music on (those little earbuds) and because I like writing, I start imagining one of my screenplays and let the music inspire me. I am quite a creative person and use this as my creative time. It gives me ideas.”
I’d like to mention at this point that after sixth form, Rose studied for a degree in English Literature and Creative Writing. She graduated in 2020.
“Music is really important in writing. I used to always like writing short stories but screen plays are my favourite format now. In everything I’ve written, characters have been central. I’ve written a comedy, a thriller, and a sort of teen drama/ghost story. So they do also have a lot of plot. This was what I wanted to do for my dissertation but it was also very serious and I wasn’t in a very serious headspace. I didn’t actually want to write anything ‘head wanky’ or dark. So I thought, I’m just going to write a comedy and I don’t know if it was particularly ‘funny,’ but it was in the style of the Royal Family/Gavin and Stacey. Good characters.
My screenplay, set in a Welsh village, was about a local pub burning down. The pub was the hub of their community, a real tragedy for the locals, and became a bit of a witch hunt to find out who was responsible. I chose to do a creative dissertation, as there was no way I was going to write a 10,000 word essay, because quite frankly, I didn’t think I would stick at it… so I thought I’d write a screen play and then, after I’d submitted my idea, my lecturer told me that no one has ever gotten a 1st on a creative dissertation. I thought, okay so I’m not going to get a 1st on my dissertation but I’ll do my best… and I did get a first!”
I told her I would love to read her screen play and asked what her ambitions were? If there was anything in the world you could have, what would it be?
“A detached cottage in the countryside, dogs, a partner… my family close by and screenwriting. It’s completely down to luck and some stuff is so subjective, you don’t know who’s going to be reading it. You send it to a publisher and you don’t know what they’re looking for.”
On UK Lockdown
The coronavirus pandemic hit the nation pretty hard and has exacerbated mental health problems especially among young people. How did she cope with this?
“I loved it, I was absolutely buzzing… No really! Lockdown was fine, we get on well as a family, we have a garden, the sun was shining and there was a lot we could take advantage of. I didn’t like my job at the time. This was at Nando’s and it was a good job – I mean, if you’re going to work for a restaurant I couldn’t imagine working for a nicer company, but I was never going to do well because of the hours and lack of routine. My shifts were changing every week. It could be any day and at any point of the day. Office hours suit me so well, because it’s routine and I know what’s what.”
Her words yet again reflect how important routine is.
“But it was also very scary and I was particularly worried about Mum. What would happen if Mum or Grandma got it? I mean some people get just like, a flu and some people get this long COVID and they’re buggered for life! Potentially even someone my age could end up dead! What I’m finding the most anxiety inducing thing is – like in the summer when I could go to the pub and mix with my friends, I was loving it… but I’ve also been scared I might become a hermit. The thought of going into the supermarket is like, there are other people and other people are dirty and might have the virus. I’m worried that could escalate into not wanting to mix with people!”
Did she miss going out and socialising with other people, though?
“Yes. If you’d asked me a year ago I would probably have said the opposite; because I didn’t like my mates. I think it’s about the friends you have. The friends I had this time, last year, would have been pressurising me to go out and break rules and it’s like – I’m just going to follow lockdown, thank you. I don’t want to go out. Just want to watch telly, do some internet shopping, have a beer…
One thing that has always been a pickle for me socially is the distance from town. I haven’t really got any friends in the village. So, if I’m going out with my friends, I’ve got to drive, which means I can’t drink (not that it’s all about drinking) but if you’re meeting in a pub it can be a bit bloody annoying. If I do drink I have to walk back and I have done this, but it took bloody hours!”
Vulnerability and Threat
I wanted to say this was dangerous; going into town, drinking and walking back home in the dark. I asked her if she was aware of the perils in life.
“God yes, I mean we were walking up to the Trundle the other day and saying this is hazardous underfoot. And then I remembered that’s where we used to do our long-distance running, when I was at the March School and thought, that’s a health and safety nightmare, running on the Trundle but we used to do it. That was only what, 10 years ago? And things changed so quickly.”
The paths around the Trundle are very uneven with chalky dips and hollows.
“And that was another thing about the Trundle. There were people there bombing down on bikes and I was thinking, oh that’s so scary! But I remember when I was a kid – and Mum and Dad as well – cycling full pelt, then somersaulting in the air because I got caught on a stone, crashing down… and I just got up again and got back on my bike. I didn’t make a fuss, none of this ‘health and safety.’ Whereas now I’m thinking God, they’re so reckless! I used to be tough with injuries and now… I get a paper cut and I start crying.”
Something else she told me that I found alarming was:
“Women with Asperger’s have an 80% chance of committing suicide and 90% chance of becoming addicted to drugs and I thought ‘fucking hell, those are awful statistics.’ That’s not a great position to be in but they’re just statistics.”
This begs the question, what help is available on the NHS for anxiety?
“In regard to getting help for mental health (Time to Talk), you’re either not mentally ill enough or ‘too far gone’ and if you are somewhere in between the two, you are added to a two year waiting list by which point your problems have gotten out of hand.”
It is reassuring to know mental health problems are better understood but from this statement, it strikes me there is still a lack of provision. I know Rose has Asperger’s but one of the last things she confessed is how much she really wants to rise above it and turn it into something positive. That symptoms like depression, anxiety needn’t be a problem. (NB. names were changed to protect some people’s identity and the stats quoted might not be exact as quoted by Rose on the date of her interview).
INSIGHTS
A most enlightening conversation, this got me thinking about my own character again, Connor, and whether I could see any clear comparisons.
Historically, women have been less likely than men to be interested in transportation, computers, or astronomy. Connor is fascinated by science and nature, has a powerful need to understand the world around him, loves to hide and be the silent observer.
Girls are more likely to be passionate about literature, the arts, animals, environmental activism (you only have to think of Greta Thurnberg), and other topics with relational themes. There are no limits to the variety and depth of interests or expertise for both females and males with Asperger profiles.
Signs of AS include obsessive interests, formal speech, rituals, social isolation, clumsiness or awkwardness, a lack of empathy and sensory difficulties. Rose revealed a couple of these signs but not all. Other conditions related with AS are anxiety disorders, and obsessive-compulsive disorder (OCD). Young children with AS are often unusually active. By young adulthood, they may develop anxiety or depression.
For more information on Asperger’s visit: https://www.autism.org.uk/advice-and-guidance/what-is-autism/asperger-syndrome
Connor like Rose, has suffered bullying, feels isolated from his peers who consider him ‘weird’ and towards the end of my book, he is even accused of being ‘a psycho’ amongst the less educated.
ANOTHER INTERESTING STORY
Dan Jones, my author friend who I’ve mentioned in previous articles, has written a book on the subject; ‘Look Into My Eyes: Asperger’s, Hypnosis and Me.’
Dan too has a diagnosis of Asperger’s. His book is an absorbing and fascinating autobiography that offers rare insights into the workings of the autistic mind from babyhood to adulthood, the impact it had on his family and how he learned to cope with the condition.
Look Into My Eyes: Asperger’s, Hypnosis and Me by Dan Jones
Dan gave me a lot of help in shaping my new book, offered priceless advice about his work in children’s homes, introduced me to the late Graham Lovell, (whose life story provided some powerful insights) and his book comes highly recommended. On Dan’s YouTube channel, he publishes guided meditations to help people relax, manage stress and sleep easier, essential resources for this strange new world we live in.
What’s next? In the run up to publication, I’ve exposed some of the complex psychological issues embedded in my characters, while at the same time trying to raise awareness into mental health issues. Next time I’m taking readers on a tour around the story’s West Sussex setting, some specific places mentioned and their context in the plot of LETHAL TIES.