Book Review: ‘Odd Girl Out’

 

odd-girl-out-laura-james-book-review

‘Odd Girl Out’ is a book by the lovely Laura James. Laura is an author and a journalist (and the owner of a communications agency). She is a mum of four children and lives in North Norfolk, UK. Laura tracks the year of her life in this book after receiving a diagnosis of being autistic from her doctor.

Here is a little synopsis:

What do you do when you wake up in your mid-forties and realise you’ve been living a lie your whole life? Do you tell? Or do you keep it to yourself?

Laura James found out that she was autistic as an adult. Odd Girl Out tracks the year of Laura’s life after she receives a definitive diagnosis from her doctor, as she learns that ‘different’ doesn’t need to mean ‘less’ and how there is a place for all of us, and it’s never too late to find it.

Laura draws on her professional and personal experiences and reflects on her life in the light of her diagnosis, which for her explains some of her differences; why, as a child, she felt happier spinning in circles than standing still and why she has always found it difficult to work in places with a lot of ambient noise.

Although this is a personal story, the book has a wider focus too, exploring reasons for the lower rate of diagnosed autism in women and a wide range of topics including eating disorders and autism, marriage and motherhood.

This memoir gives a timely account from a woman negotiating the autistic spectrum, from a poignant and personal perspective.

Quote from amazon.co.uk

My review:

This book is phenomenal and these are the main reasons why:

  1. Whilst reading it I’ve never felt SO understood.
  2. Laura is very open and forthcoming about her struggles. This is so refreshing.

The book covers Laura’s autism assessment and diagnosis, childhood, teen years and adulthood so far. It’s fascinating to read how Laura was assessed/diagnosed aged 45 and how she has built up so many different coping mechanisms in order to function in a neurotypical world.

Laura’s book also goes into detail about things like relationship struggles and her special interests. This was particularly interesting to read about and it really emphasised how important special interests are to autistic people, and reinforces the point that they should never be denied or taken away from someone.

‘All my life I had tried so hard to be neurotypical, but in that one moment it became utterly clear that I was never going to fit that mould.’ Laura James, The Guardian.

Laura writes about all the daily and mundane things that for some can be such a struggle. Like working in an open plan office. Neurotypical people can deal with this environment okay and sometimes even enjoy being able to talk to people freely around them. For Laura (and me!) it’s nothing short of a bloody nightmare. The sound levels change so frequently that it can be quiet one moment and so loud the next that you can’t think or function properly. Bright strobe office lights can be distracting and too much to bear (and if you haven’t already why not read about my fluorescent jacket troubles in my own office here!). Not to mention the varying smells, people touching you from behind to grab your attention, etc. New experiences really are so overwhelming. This book really will open your eyes to the world around you and make you think twice when you are in these sorts of environments.

The depictions of autism that are mainstream tend to be from things such as: RainmanThe Curious Incident and the Netflix series Atypical. This is all well and good but these films and shows sum up autism to generally be a very male condition when really it’s not at all. Female autism is less documented and understood and I feel that Laura touches on this: a lot of female autistics mimic others around them in things like social situations and are able to get by copying and learning from others behaviours. I think this is why a lot of girls are going undiagnosed for so long. Because we are able to just about manage and put on an act/mimic others to get by okay in life.

A lot of girls are told they ‘don’t seem autistic’. I think this is because we are able to cope on the surface of things and learn behaviours such as keeping good eye contact in order to fit in. It’s all about being able ‘pass’ socially in order to stay under the radar and seem ‘normal’. That’s pretty awful don’t you think? I constantly have to push myself into new situations that I don’t want to do and can’t cope with just to seem like I am normal. Then I can have meltdowns before and after these because it requires so much of my energy and is so hard sensory-wise.

It’s obviously slightly tricky to write a book review as I don’t want to giveaway large sections of what happens because people might want to read it!

I do just want to mention a couple of things. This book was a bit hard to read. I don’t mean this in a bad way at all – it was always going to be difficult to read a book on someone else’s life especially if they struggle with the same things as me (or you). I found that a lot of the autism and sensory parts of the book made me upset / triggered bad thoughts and feelings. This did not put me off and should not put you off either. I think I just resonated with a few of Laura’s struggles so much that I couldn’t help but feel upset but also relieved all at the same time. And yes, I cried through parts of this book. I’ve only admitted that to be honest, because so many things Laura mentioned echoed my own struggles.

The one other thing to mention is that the book can be slightly hard to follow at certain points as Laura jumps back and forth from her childhood memories/life to the present day but this might just be a dyslexic thing I struggle to keep track of!

I’m going to admit to something that you’ve probably already guessed by reading my blog. I have always been the Odd Girl Out. Throughout my life I have constantly struggled with the seemingly normal and mundane things through childhood to my current early adulthood. I hate all the things that neurotypical and young adults seem to love doing like: going to loud places, loud music, meeting up with friends, going to new places, parties in general, restaurants, going on holiday, buying new clothes, drinking alcohol, going to super bright or colourful environments, trying new food, travelling…look the list is actually never-ending. The point I’m getting at is…this book made me feel less alone. I know that sentence is a little bit sad, but it’s true. Because having these struggles all the time is very (very) tiring and nobody else truly seems to understand me (apart from my mum!) or what really goes on in my head. This book gives me just a bit of hope for the future.

I have passed this book onto my mum who is currently reading it. I really think the book gives such an insight into what goes in Laura’s mind and highlights what other autistic people struggle with everyday.

So how would I sum this book up?

Laura learns that ‘different’ doesn’t need to mean ‘less’ and how there is a place for all of us, and it’s never too late to find it.

Conclusion: If you can, you have to read this book (no matter who you are!)

Read an extract of the book here

Read an article Laura wrote for The Guardian (UK) here

Buy the book here: UK / US / Rest of the world

Advertisements

A little (but important) Q&A

question-marks-background-e1464013542588

Since my last post I have had a couple of questions in my blog comments which I thought I would answer in a blog post:

Are you autistic, I thought you had SPD?

Okay so here’s the thing. I was diagnosed with Sensory Processing Disorder (SPD) aged 8.

Over the years I think I have slowly come to the realisation that I might be autistic as I have a lot of little traits and sort of signs that point towards it. Many autistic people struggle with sensory issues but I’d never really thought about it the other way round – what if people (like me) with sensory issues actually sit somewhere on the autistic spectrum…?

Here are some traits that I or others have noticed in myself:

  • I have a very literal understanding of language and find jokes and sarcasm hard to understand.
  • The world can seem a very unpredictable and confusing place and I prefer to have a daily routine so I know what to expect each day. I hate change / new things and always react badly to them. I can cope better if I can prepare for changes in advance. For example: I would happily eat the same things everyday if I could and I always found it difficult to move from one school to another and onto university.
  • I find holidays or anytime off work very difficult and upsetting. I have to make routines and to-do lists to form a sort of schedule to live from.
  • I experience over sensitivity to sounds, touch, tastes, smells, light, colours, temperatures and pain. This is referred to as sensory sensitivity.
  • I am often unable to understand and express my own needs and become upset and overwhelmed very easily.
  • Autistic people often have repetitive and restricted interests. I find I am specifically drawn to (and love) police/crime/medical documentaries and TV shows (I even did my uni dissertation on UK policing!).
  • I seek out time alone when overloaded by other people. I find social situations an absolute nightmare. I try desperately to fit in and have a ‘fight or flight’ reaction to them.

(This list goes on and I have left off some more private/personal problems I struggle with that I am not comfortable listing on the internet!)

I have recently seen a psychologist who believes I am autistic and that I do have autistic traits. She feels I would sit somewhere on the autistic spectrum and encouraged me to go forward for a formal diagnosis. I have recently been contemplating whether it would be beneficial or not for me to be assessed but as the NHS waiting list is months long I would have to pay privately for this.

There are a lot of self-diagnosed autistic people out there. And I think for the time being I might be one of them. Autism really sums up my difficulties well into one easy to say ‘label’. I realise this may sound bad, but I don’t want it to come across that way.  Saying ‘I am autistic’ really helps me to explain my difficulties to other people quickly without explaining all my sensory and daily living problems.

Hi. Do you think you could do a post on occupational therapy? 🙂

Of course! Sorry if it seems like I’m rambling:

I’ve tried lots of different therapies such as Cognitive Behavioural Therapy (CBT) and therapy sessions with CAMHS (child and adolescent mental health service, NHS, UK) however I found these unhelpful and these made me feel worse. I have found Occupational Therapy (OT) to be the most helpful form of therapy.

The main problem I find is that UK doctors are not very clued up when it comes to sensory problems. This is a real shame – although some doctors are fab. I was referred to an Occupational Therapist as a child which was when I was diagnosed as having SPD. OT referrals are only offered to babies and young children in the UK and the service seems to stop as soon as you get any older. Once you are a teen/young adult/adult you only seem to be offered talking therapies like CBT.

I have seen an OT privately before (although this can be expensive it was definitely beneficial). The main thing my Occupational Therapist taught me when I was a child were fine motor skills like being able to cut with scissors, grip a pen/pencil, etc.

However the main thing OT’s focus on is this: de-sensitisation. It’s all about slowly learning to de-sensitise yourself to sensations you find hard – like touch. I was taught about body brushing. I totally recommend looking up something called the Wilbarger Protocol (a form of Brushing Therapy) you can read about it here. It’s a brushing therapy that helps people desensitise their body (that you can do at home) – also the brush can be bought online through Amazon and isn’t expensive! You should ideally do this under the supervision of an OT to make sure you are using the right technique but these instructions are helpful if you want to try it out for yourself.

I used to find it incredibly difficult to brush my hair and teeth. Although I still absolutely hate brushing my teeth I am able to withstand the vibrating motion of an electric toothbrush in my hand which is great as I now my brush my teeth much better even if the sensation is still quite tricky. I am also able to brush my hair – I apply a firm/heavy amount of pressure which really helps me.

Also I totally recommend reading the book ‘Too Loud Too Bright Too Fast Too Tight’ by Sharon Heller

I recommend also looking up Sensory diets (and weighted blankets!) and reading my posts here about how these have helped me:

Do feel free to continue to ask questions in the comments of my blog and I will always try to answer them as best as I can. 

Autistic in the workplace

The super lovely Alaina Leary (A Boston-based “Swiss army knife” of publishing and digital media skills) tweeted a few weeks back asking her followers how could employers help support autistic employees in the workplace. I reached out and below are the questions I answered on the topic. Read the full article here.

Screen Shot 2018-03-30 at 18.05.46

What does inclusiveness and accessibility mean to you in the workplace?

  • It means being understood as a valued team member / employee but having my difficulties and accessibility needs taken into consideration so that I am on the same level playing field as everyone else. I want to be able to work as time-efficiently and effectively as everyone else but I just need a few accommodations in place to help me do this well.

What are some of the challenges facing autistic people who are in traditional workplaces, particularly due to a lack of accommodations or accessibility?

  • Less awareness or willingness to learn more about people with autism and their difficulties
  • Less likely to understand how the work environment affects us and how simple accommodations can really help

What can employers, coworkers, hiring managers, HR departments, etc. do to better support autistic employees?

  • Give autistic employees more time to process things for example: more time to read through and sign forms.
  • A quiet place/room/environment to work from. Open plan offices can be difficult as they can be quite noisy and distracting places to work in.
  • Maybe provide mentors for weekly or bi-weekly catch-ups as just having someone to chat to about work and what you need more help with can be very helpful.

What stereotypes or myths have you come across about autistic people that affect how autistic people are treated in the workplace?

  • Stereotypes of being very slow to understand and complete tasks sometimes.

Can you give me a specific example of different things that help you succeed in the workplace? Have you ever been in a situation where you’ve had to ask for your workplace to be made more accessible to you?

  • Wearing noise cancelling headphones or earphones.
  • Asking people to remove their fluorescent bike jackets from desk hooks around the office as sensory-wise these are super bright and distracting to me!
  • Everyone wears in-earphones and listens to their own music rather then have one loud office radio on which works well.

Are there any common workplace trends that you feel employers need to re-think in order to make the workplace/office more inclusive? (For example, Skype interviews or open office plans)

  • Open plan offices can be very distracting and noisy – quiet break-away rooms could be a great step forward – just to get away from the loud environment if you need to concentrate on work properly.
  • Skype interviews or over the phone interviews can be difficult as it’s hard to understand facial expressions, tone of voice, long questions (which I always need to hear repeated again). Although a face-to-face interview is very intimidating I feel more comfortable asking for questions to be repeated and being able to hear and see the interviewer properly.

Have you ever worked remotely, or do you have anything to say about the benefits of working remotely or flexible working hours for autistic employees? 

  • I have worked remotely / have flexible working hours which does help to split up my time / days between different environments. I do miss out on team discussions and meetings if I am not in which can be difficult to catch up on as I wasn’t in the room at the time!
  • Benefits however are: I can choose my hours so I can work earlier or later in the day to suit me / how I feel.

Thanks to Alaina Leary and do go check her out on Twitter!

Also check out my previous blog post on ’10 things I wish my employer understood about Sensory Processing Disorder (SPD)’

‘Some autistic feels’

This slideshow requires JavaScript.

So I received this super awesome ‘lil zine in the post from the super lovely Megan Rhiannon’s Etsy shop this week! It’s intricate illustrations are beautiful and give a little insight into ‘Some autistic feels’. Have a little click through the slideshow of images above which give a little sneak peek of some of the pages!

Follow Megan here: Twitter | Instagram | YouTube | Etsy UK Shop

Some of my own autistic feels:

  • Living in big comfy baggy jumpers and skinny jeans all day everyday. I would dress in grey and black 24/7 if I could!
  • Hot drinks: specifically tea which is my go to hot drink…(with plain digestive biscuits!)
  • My weighted blanket: I use it every night without fail and during the day if I feel stressed out or anxious (it’s from Sensory Direct)
  • My phone: I listen to lots of podcasts and audiobooks to keep me distracted and to learn on the go about new things. (I might do a little blog post listing all the podcasts I love) I also love taking photos and videos of quirky things.
  • My wave projector: I use this most nights, it replicates sea waves moving and it’s super calming to watch 😍
  • My Sensory DIY Box: my go-to when I need to fidget or calm down sensory-wise. Currently loving my little fidget cube and tangle!

So there are some of my own autistic feels – let me know what little things you use everyday to self-soothe or distract yourself in the comments below…

Cholinergic urticaria…and what on earth it is.

I now know (it was/has been a long winded process) that I suffer from something called Cholinergic Urticaria. ‘But what the hell is that Emily’ I hear you ask…

Things from the beginning (this post is roughly a 10min read):

I am a hella sweaty person. I wasn’t always though. Since I was around 16 years old my sweatiness just continued to ramp up and up every year. I just seemed to be always sweaty no matter the time of year, the temperature, my environment, etc. I get it worst under my arms and on the palm of my hands. This is referred to as having ‘Hyperhydrosis’ which is a very fancy medical term for a person who suffers with excessive sweating. I tried numerous treatments for my sweatiness like special deodorants, sprays, and even a treatment called Iontophoresis.

The Iontophoresis treatment consists of a medical device which is used to pass a mild electrical current through water – you pop your hands/feet in the water dish (or use pads under your arms). This method is apparently shown to dramatically decrease sweating. However this didn’t prove beneficial for me – and it is super expensive if you want to do it at home for yourself. I had scheduled appointment sessions for it at my local hospital and luckily had access to it via the NHS (UK).

I also began to realise steadily that I was now suffering from more and more night sweats (like soak the bed, change your PJ’s immediately, I-need-a-shower-right-now-oh-no-I-can’t-it’s-flipping-3am) and then the FLUSHING turned up. Yup I’d get random flushing attacks every few days . My flushing was bright red tomato-like all over my face and on my hands too. This past year the flushing just became steadily much worse and I was having flushing attacks 1-3 times a day.

This made life BORING. I felt like I was constantly washing because I always felt sweaty.

And then… I slowly started to realise that foods were affecting my flushing. Hot food, hot drinks and tomatoes seemed to make me flush very violently and made me so blotchy like a rash. I used to love tomato soup – but I actually looked AWFUL after having some because it was a hot food full of tomato (this was my guess!).

I use to go to the gym near where I live but I stopped going because after 5-10 minutes of running/exercising I would look horrific. I had a horrible blotchy bright red face that was so hot and itchy and my arms and hands were bright red and would feel like they were burning. The redness wouldn’t settle down for up to 2 hours after going to the gym. I also suffered from this whenever having a shower or bath which was frustrating to deal with.

Social situations were becoming an absolute nightmare and still are to this day! As if I didn’t have enough to worry about sensory-wise and anxiety in general about social situations I now would go bright red and blotchy all over my face whenever I ate out or was going from indoors to outdoors or the other way round. My face just burned and felt red hot. People continued to point out:

  • ‘Emily’s gone all red!’
  • ‘Aww you’ve come over all embarrassed!’
  • ‘Why don’t you just take your jumper off if you’re hot?!’ (it’s my face that’s hot – I can be absolutely freezing and have cold hands but a flushed face!)
  • Also one of my favourites (not) ‘Do you know you’ve gone bright red?’

YUP. It’s my face – I’m quite good at knowing when it’s red BECAUSE IT BURNS and is NOT COMFORTABLE (rant over!).

So: I went to my GP and explained I was getting these weird flushing attacks and that I really wasn’t quite sure what was happening. Was I allergic to certain foods? Did my sweating have anything to do with my flushing? I was prescribed antihistamines to see if they made any difference.

I then waited 6 months for an Immunology / Allergy clinic appointment at my local hospital. A super lovely doctor started righttttt from the beginning of all the symptoms I had been experiencing over the years and at the end of the appointment explained that I had:

Cholinergic Urticaria…

Cholinergic Urticaria is a medical term used to describe ‘physical urticaria’ also known as hives. It is recognised by a hypersensitive response the skin has as a result of the body increasing in temperature and the release of sweat. “Why do I itch when I get hot or exercise?” is also the most common symptom experienced by other sufferers.

Individuals may experience a cholinergic urticaria reaction in response to any activity that increases overall body temperature (or causes a sweat release).  Some examples include the following:

  • Taking a hot shower or bath
  • ShowerSweat-MemeEating spicy foods
  • Exercising or doing physical activities that increase body temperature
  • Stress or anxiety
  • Emotional responses (sadness, anxiety, anger, laughing)
  • Transitioning from a cool environment to a hotter environment without allowing the body time to slowly acclimate to the temperature difference (such as walking from a cold room to a hot room)

THIS LIST EXPLAINED ALL MY SYMPTOMS. I cannot take a bath or shower without going red and blotchy. I can’t exercise without looking like I’ve been severely sunburnt, I get awful flare-ups when I am anxious, stressed, emotional and when I change environments! (However I luckily don’t like spicy foods!).

So to put it simply… I am pretty much allergic to my own sweat. When I thought I was having flushing attacks I was actually breaking out in blotchy hives. The doctor explained that being allergic to my own sweat (when I am the sweatiest person on earth) is a pretty vicious and never ending cycle. This was not the greatest thing to hear but it was reassuring to hear a doctor understanding my predicament.

When Googling about the condition I came across a lot of news / health articles that simply said ‘Woman is allergic to exercise’ like some sort of gripping news headline meant to attract readers. This was slightly disconcerting but also exactly what I felt like.

Anyways! Currently scientists and researchers don’t actually know why cholinergic urticaria (or heat hives) develops, or what causes it. Some research indicates it could be down to an autoimmune condition to one’s own sweat or ‘sweat serum’. Other studies, however, have suggested it could be a result of an allergic component or even a blood disorder.

There is no cure for Cholinergic urticaria, and treatment options are often limited. Some common treatments include taking antihistamines (such a Allegra, Zyrtec, or stronger ones), avoiding known triggers (such as hot weather, physical activity, and spicy foods), corticosteroids (only for extreme cases), anabolic steroids, UVB therapy, sweat/exercise therapy, diet changes (such as avoiding known trigger foods), and more.

Cholinergic urticaria often changes, much like season allergies or other allergic conditions. Individuals may experience periods of heightened sensitivity, as well as periods of almost no reactions or very low sensitivity. This can sometimes be affected by seasonal weather, as well as other unknown factors. This condition may last for months, years, or may even go away and come back sporadically throughout one’s live.

In one study, the average duration was approximately 7 years, although some people had this condition (on and off) for up to 30 years. Even though this condition may be long-lasting and highly variable, individuals suffering with this can often find treatment regimens that enable them to live a relatively high quality of life and go on to work, go to school, and engage in other activities.

So I am now on 4 antihistamines (2 taken in the morning and in the evening) and trying to avoid – but sometimes giving in to – trigger foods. Here is a list of the foods high in histamine for anyone interested:

Histamine Rich-Food:

  • Fermented alcoholic beverages, especially wine, champagne and beer
  • Fermented foods: sauerkraut, vinegar, soy sauce, yogurt,etc
  • Vinegar-containing foods: pickles, mayonnaise, olives
  • Cured meats: bacon, salami, pepperoni, luncheon meats and hot dogs
  • Soured foods: sour cream, sour milk, buttermilk, soured bread, etc
  • Dried fruit: apricots, prunes, dates, figs, raisins
  • Most citrus fruits
  • Aged cheese including goat cheese
  • Nuts: walnuts, cashews, and peanuts
  • Vegetables: avocados, eggplant, spinach, and tomatoes (this explains a lot!)
  • Smoked fish and certain species of fish: mackerel, tuna, anchovies, sardines

Histamine-Releasing Foods:

  • tomatoes1Alcohol
  • Bananas
  • Chocolate
  • Cow’s Milk
  • Nuts
  • Papaya
  • Pineapple
  • Shellfish
  • Strawberries
  • Tomatoes (this explains a lot!)
  • Wheat Germ
  • Many artificial preservatives and dyes

The antihistamines have helped a bit although I still suffer with 1 or 2 flare ups everyday and the night sweats don’t seem to want to give up. Maybe I’ll do an update to this post at some point in the future…

So apologises for the ridiculously long post but that was my weird old journey to finding out that alongside my SPD I also have Cholinergic Urticaria!

Cure/treatment options quote: www.cholinergicurticaria.net

Foods list: www.mindbodygreen.com ‘Everything you need to know about histamine intolerance’.

Hello to you 👋

This slideshow requires JavaScript.

Hello to you – I’ve recently had an influx of lovely new followers here on my blog and on my Instagram page! So I thought why not give everyone a little intro (or refresh!) on who I am and why I blog about sensory stuff. To me there is no better way then a good old-fashioned drawing to explain a bit about myself!

Summary of my drawings in text:

  1. I’m Emily, I am 23 years old and I work as a Creative Designer.
  2. I have Sensory Processing Disorder: a neurological disorder that (put simply) makes it hard to receive information to my brain. SPD is a neurological traffic jam and info I receive through my 5 senses doesn’t get organised or detected properly. This means my 5 senses are constantly overwhelmed and overworked so the world is a sensory place for me. SPD creates challenges in my everyday living and performing tasks. I was assessed / diagnosed with SPD aged 8 by an Occupational Therapist (OT).
  3. SPD described in a sentence: It’s like receiving every sense all at once: touch, taste, sight, smell and sound!
  4. I was 21 when I began blogging – hence the name ’21andsensory’. I decided to start documenting my sensory life right here on this very blog. I share tips, tricks, experiences, reviews and much more!
  5. I also experience/have/suffer from: anxiety, dyslexia, mild OCD and hyperhydrosis (excessive sweating and flushing)
  6. I even have my own sensory podcast…! You can have a listen here if you like. Also available through Apple Podcasts and Google Play.

So yup that’s me in a nutshell.

Blogging as a sensory-being in a super-sensory world!

Menu