Behind the Mask: Autism for Women and Girls (TEDx Talk)
Posted on March 29, 2022
While I have talked about my experience of being autistic (and will be doing more of this week), I also wanted to share this video because it’s a very good summary of Autism in women, covering multiple important topics.
In this TEDx talk, Kate Kahle talks a little about her experience as an autistic woman but she also talks about some of the history behind Autism and Asperger Syndrome, the evolution of the different labels used in relation to Autism, the differences experienced by women, masking, special interests, the mental health implications, and some of the ways to support autistic individuals.
The rest of my posts for this week are more substantial but I really wanted to share this video this week. I wanted to post a range of things: word, photos, and video. We all process information differently and I wanted to make sure there was something for everyone.
And So Begins World Autism Acceptance Week 2022…
Posted on March 28, 2022
The newly renamed World Autism Acceptance Week begins today! I’m not sure I agree with the name change – I’m not convinced that neurotypical society has progressed beyond awareness (something I wrote more about here) – but I am on board with a week that provides information about and celebrates being autistic. So, every day this week, I’ll be posting something Autism related. And to start, I thought I’d pull together everything I’ve written about Autism and my experience of being autistic so far…
- Eye Contact – My thoughts on eye contact as a person with Autism.
- One Woman With Autism – My experience of Autism Spectrum Disorder.
- Tired – My history of fatigue and how it relates to Autism.
- Christmas and Autism – Some thoughts on Christmas and how to make it an enjoyable experience as a person with Autism.
- A Study of Autism – Why I love doing Autism research studies.
- When I Said I Wanted Superpowers, This Isn’t What I Meant – Just me rambling about the use of superpower metaphors in mental health.
- World Autism Awareness Week 2018 – Introducing World Autism Awareness Week and Autism itself, as well as some useful links and the video for the awareness campaign.
- The Consequences of an Autism Diagnosis – My personal pros and cons of being diagnosed with Autism.
- Living With The Volume Up Loud – My experience of being highly sensitive to the world around me and what can cause me to go into sensory overload.
- Learn With Me – My experience of being diagnosed with Autism at 20.
- Introducing My Autistic Self – How I told people about my diagnosis.
- Introducing my Mum – My Mum is my hero and she needs her own post, plus she may be writing some of her own pieces in the future.
- When Anxiety Is The Only Thing On The Menu – My experience of food and eating as an Autistic person.
- Autism Awareness Day 2018 – A round up of my Autism Awareness Week posts and some encouraging words for anyone struggling.
- Moving House When You’re Autistic – Tips for moving house from a person with Autism.
- Autistic and Afraid of the Dentist – My experience with dentists as a person with Autism and how seeing a specialist dentist helped me.
- Travelling as an Autistic Person – Some of the things that help me when travelling.
- Getting A Diagnosis – The Autism Edition – My experience of getting an Autism diagnosis.
- ‘Is Autism a Gift?’ (At New Scientist Live) – Dr Anna Remington’s talk about some of the positives of Autism.
- My Experiences with Therapy – CBT, EMDR, DBT, and my experience of them.
- Meltdowns, Halsey, Halsey, and Meltdowns – A really intense weekend where I saw Halsey twice and had multiple meltdowns.
- What Women With Autism Want You To Know – A video about women with Autism.
- Metaphors For Autism – A handful of metaphors for Autism.
- My DSA Assessment – The traumatic experience of being assessed for Disabled Student Allowance.
- Living With Autism During A Pandemic – My experience of living through this pandemic so far and some tips for coping, both for those with Autism and those without.
- Seeing Yourself In The World Around You – The importance of the representation of mental health and neurodiversity.
- The DSA Process For My Masters Degree – How I got Disabled Student Allowance and tips for those going though the process.
- Going Back To University During A Pandemic – My feelings on the new academic year while we’re still in the middle of a pandemic and the choices I’ve made to make it as safe and anxiety-free as possible.
- Creative Difference: Exploring Art and Autism – A webinar held by Autistica where four autistic artists talk about the relationship between their Autism and their approach to art.
- An Assessment with a Difference – My hypermobility assessment.
- A Day In My Life (University with Autism Spectrum Disorder) – A day in my life as an autistic university student.
- Autistic Students: Coping With Change – Speaking at a Conference! – I got to speak about my experience as an autistic student at a conference.
- World Autism Awareness Week 2021 – An introduction to WAAW2021 with links to good organisations and all the posts I’ve written about being autistic.
- Quotes That Helped Me (Autism Edition) – A collection of quotes about Autism and from autistic individuals.
- Parenting A Young Adult With Autism Spectrum Disorder: I Interview My Mum – Asking my Mum about her perspective on my journey with Autism, which has obviously involved her to an enormous degree as we’ve really tackled this process and the management of my struggles as a team.
- Parenting A Young Adult With Autism Spectrum Disorder: My Mum Interviews Me – A follow up to the previous post, my Mum asked me a set of similar questions, about my experience with Autism, particularly in the context of the late diagnosis.
- Everything Changed For Me This Year (Autism Awareness Day) – Learning that all of my physical and mental health issues are connected.
- How I Improved My Social Skills – How I learned to manage my social struggles (to a degree) and the tips I still use to make socialising easier.
- Autism Awareness and/or Autism Acceptance – My two cents on the debate over whether Autism Awareness Month/Week/Day should be Autism Acceptance Month/Week/Day.
- The Pros and Cons of Winter – The good parts and the difficult parts of winter from my perspective as an autistic person.
These posts are ones specifically about being autistic or Autism-adjacent experiences but there are a lot of other posts where I do talk about how being autistic affects one thing or another. So if you’re not seeing what you’re looking for, check out my complete list of posts and if you can’t find it there, shoot me a message. I’m working on a lot of Autism related posts at the moment so what you’re looking for may well be in the pipeline.
Experimenting With Melatonin
Posted on March 22, 2022
After the Temazepam didn’t make a dent in my insomnia, my GP prescribed melatonin and finally – FINALLY – I started getting some sleep again. And in the nighttime hours. I started out at 2mg but almost straight away, I found it almost impossible to wake up in the morning so we reduced it to 1mg with the blessing of my GP.
As is always the case with posts about medication, supplements, etc, this is just my experience. Please don’t start, change, or stop taking anything without the advice and support of a medical professional.
WEEK 1
So it definitely helped me get to sleep more quickly. I went from lying awake for hours – for most of the night – to falling asleep in less than an hour. It wasn’t always quick but it was a lot quicker than it had been (part of that could have been due to a flare up of my chronic pain though).
Almost straight away, I was struggling to wake up in the mornings. I would wake up and fall asleep again over and over; I couldn’t seem to stay awake and that meant I wasn’t getting up until late morning or early afternoon. After a couple of days, I went from 2mg to 1mg but it didn’t seem to make any difference. I mean, I appreciated being able to sleep again but suddenly I was sleeping more than twelve hours, which was just problematic in a different way.
Again, almost right away, I was finding myself increasingly sleepy in the day. That was another reason to reduce the dosage but that didn’t seem to make any difference on this either. I was back to drinking Red Bull pretty much every day – not a habit that I want to return to but I was just too tired to come up with an alternate solution and just wanted to make it through the day. My eyes were always tired and I struggled through the day, trying to do things, trying not to fall asleep. And that was with the caffeine (I’m starting to wonder if caffeine has any effect on me at all at this point). It’s hard to know whether it’s the Moclobemide, melatonin, or just the accumulated lack of sleep but I really, really don’t want to spend my whole life feeling tired and sleepy because MAOIs are the only medications that work.
WEEK 2
It was taking me a while to get to sleep – I couldn’t get comfortable (yay, chronic pain); I couldn’t relax; I couldn’t unwind – but it was still so much better than before I started taking the melatonin. I was still getting to sleep a lot quicker than I had been. I do keep going to bed too late, which is a habit that frustrates me, but I’m trying to be better about that.
I was sleeping restlessly, waking up a lot, which wasn’t super restful. Waking up was a struggle: I’d fall asleep, wake up, fall asleep, wake up… I just couldn’t wake up. I couldn’t open my eyes or make my hands work for such a long time; it was horrible. I don’t know if that’s the melatonin or the Moclobemide but, whatever it is, I don’t like it. Getting up took a lot of effort and I usually didn’t manage it until into the afternoon.
During the day, I was physically exhausted but also really sleepy; I couldn’t keep my eyes open (and they were just so tired). I was ready to go back to bed within a couple of hours of getting up. I started consistently drinking Red Bull again, something I haven’t done since I stopped taking the Phenelzine last September. It’s not a habit that I want to start again but I don’t really know what to do: I’m so tired that I can’t figure out what the right thing to do is so I’ve just been going with it to get through the day. But even with the Red Bull, I’m very drowsy and tired.
WEEK 3
While I’m certainly drifting off faster than I was before I started the melatonin, it hasn’t been straightforward. It often took me quite a while to get to sleep, like I had to concentrate in order to sleep (which seems somewhat counterintuitive) but then I was restless and woke up over and over. However, there were also nights when I fell asleep quickly and slept well. So I’m not sure what conclusions to draw from that.
Generally, waking up was unpleasant. I’d wake up, fall asleep, wake up, fall asleep – over and over again. It was very frustrating. I found that eating something straight away did help me stay awake but I hate it: food is absolutely not what I want when I first wake up but it’s the only thing that seems to make waking easier. Over the week, I have noticed that I’m naturally waking up earlier and earlier, which I am grateful for.
I struggled during the day though, physically exhausted and just so sleepy; it was so hard to keep my eyes open. I don’t know if the Red Bull helped at all. Socialising, even when it was enjoyable, was exhausting and I fell asleep on the sofa multiple times. That, of course, just made it harder to get to sleep when evening rolled around.
WEEK 4
Given how much I struggled to wake up and how sleepy I was during the day, I stopped taking the melatonin, an experiment to see if it was the cause of my drowsiness, if I could sleep without it.
My sleep was better than it had been before this experiment with melatonin but it still wasn’t great. It was still taking me a couple of hours to get to sleep but I wasn’t lying awake all night, which was an improvement. Most nights, I slept restlessly and kept finding myself stuck between asleep and awake or with busy, vivid dreams.
I consistently struggled to wake up, although I discovered that eating something straight away did help. Otherwise I just kept drifting back into sleep. Waking and then getting up was just a battle, every single day. I was managing to get up earlier than I have been able to over the last few months but then I was generally sleepy within an hour of settling to whatever I was working on.
I was incredibly sleepy during the day, every day without fail. I was easily fatigued and it didn’t take much to leave me passed out on the sofa for a couple of hours. Everything just seems to take so much energy. The urge to nap was constant and my eyes kept closing; it took all of my energy just to stay awake. Even with a Redbull or two in my system, I was always drowsy. I wish I knew why the sleepiness kicks in during the day only to completely disappear at night; it’s really wearing me down. It seems clear that the MAOIs are at least the main cause of this sleepiness but if they’re the only way forward, then we need to find some way to counteract it. It just isn’t sustainable. I can’t do what I need to do like this.
WEEK 5
Having come to the conclusion that the melatonin wasn’t the cause of my daytime sleepiness, I decided to try another experiment. Given that I still wasn’t sleeping particularly well, I thought I’d try the melatonin again, just to be sure. I started with the 1mg but that didn’t seem to be enough: I’d feel my body, particularly my legs, start going to sleep but then they’d twitch awake, horribly and painfully. That only made it harder to get to sleep, both the physical pain and the fear of it. So, thinking that that dose might not be enough, I returned to the originally prescribed dose of 2mg. It had mixed results. Some nights I slept quickly and well but some nights, I slept terribly, waking over and over and experiencing busy, stressful dreams. It’s better, I guess, than sleeping badly all of the time but it’s not as straightforward as I’d hoped it would be.
The drowsiness – and fatigue – is still a problem. I’ve got some ideas to pursue on that front but there isn’t the time to test any of them out before my trip to Nashville so, until I get back, I’m just going to have to muscle through and hope the adrenaline can plug the gaps. I’m anxious – I don’t want to miss out on anything – but I’ve also been living with this, to some extent, for years now. I’m well practiced at managing my energy, even though I don’t always listen to my experience and instincts.
So I’m not really sure how I feel about the melatonin. After five weeks, I’d hoped I’d know one way or the other whether it was helpful but I’m not sure that I do. It might have broken the sleepless loop I was in but it hasn’t proved to be reliably helpful and on the nights it isn’t helpful, it feels like it makes things worse. So I don’t know. I really don’t.
Finding Hope