Posted on April 1, 2021
When my Mum was answering my questions in the previous post, she was inspired and suggested she interview me in return, with similar questions. I was up for that so here goes: this is the mother of a young adult with Autism Spectrum Disorder interviewing her daughter with said Autism Spectrum Disorder…
Briefly, what has it been like for you to get a late diagnosis?
In some ways, it was such a relief. I’d been struggling for such a long time and not having a name or label caused me a lot of anxiety and made it difficult to get any support. So in that sense, it was great. It obviously hasn’t changed the fact that I struggle but I have more confidence – it had been going on for so long and had become so complex that I did worry I was making it up and actually causing my problems – and the support allows me to work on the areas I struggle with, managing them, decreasing the intensity, and creating solutions.
But I don’t want to imply that it’s been a hundred percent straightforward because it hasn’t. For twenty years, I operated under the assumption and expectations (from myself and others) that I was neurotypical and would go on to have a neurotypical life, meeting the usual milestones. I’d always held myself to a high standard and that wasn’t really a problem until I was finishing school: learning was something I was comfortable with and excelled at and my social issues were just assumed to be shyness. But then life started to get harder, with bigger and more serious demands, and I struggled more and more but still held myself to the same high standard. I still do. It’s very deeply ingrained. So it’s really, really hard to accept that my life is never going to look like what I expected or like the lives of my peers.
Having discussed how I’ve been your advocate at various times and in various situations, where did that need come from? How has that made you feel both pre and post diagnosis? Are there particular times where it has felt more necessary than others?
I’ve definitely lost count of how many appointments we had with various people where I would explain what I was going through and how much I was struggling only to be told things like, “All teenagers struggle,” and “Well, you’re showered and dressed so you’re clearly coping.” There’s so much I could say about those experiences alone but after a while, those appointments made me so anxious that I just couldn’t talk. At all. I needed someone who could tell my story for me when I wasn’t able to and since we had (and do) talk about everything, you were always able to give all of the information and spare me at least some of the anxiety involved in those appointments. Pre-diagnosis, you were the only one a hundred percent behind me and I honestly don’t know what I would’ve done without that. Best case scenario, I don’t think I would’ve gotten my diagnoses and the worst case scenario doesn’t bear thinking about. If I hadn’t had you in my corner, researching and reaching out and pushing for answers, I certainly wouldn’t have gotten this far. Post-diagnosis and in the time since, I think I’ve grown in confidence and have needed it less but there are still times that I’ve, at the very least, needed back up. There are many situations that I do now feel able to manage myself but in times of great stress or anxiety, having someone on my side, someone ready to step up and take over when I get overwhelmed or it all becomes too much, is just so important in moving life forward. I like to think that I get a bit further every time before needing you to take over but I am also aware that I may never be able to completely handle these kinds of situations when under great stress.
Having answered this question from my perspective, what about you? What would you would consider to be the positives and negatives of having Autism Spectrum Disorder?
I think I’ll start with the negatives first. That’s not a particularly optimistic start but the negatives do, at this point in time, feel more overwhelming and painful. The high levels of anxiety and overwhelming intensity of my emotions can make it really difficult to function day-to-day, plus both are incredibly exhausting. All of that is really hard. I also often feel very different from – and behind – my peers, which can feel extremely distressing. Not really in a competitive sense but because I really want to experience all the things they get to experience and often take for granted, knowing that I may never get to have those experiences.
Onto the positive things… Admittedly this perspective is harder because I am in a period of feeling that my ASD takes more from me than it gives back. Hopefully one day I won’t feel this way. But for now, positives… Although the strength of my emotions can be overwhelming, I definitely prefer it to the idea of ambivalence or apathy. And while the negative emotions are awful, the positive ones are like nothing else in life. I imagine it’s like going from grainy black and white to high definition colour: when I’m happy or passionate or excited, I feel like I’m glowing brighter than the sun. I don’t know if that makes sense but it’s how it feels. I can also get completely immersed myself in something: it doesn’t even feel like I’m focussing because I don’t feel like I’m in control, but I think people would call it deep focus. I can work on something for hours and fours. For example, I once started working on a song at eight in the morning and when I next looked up, it was dark and my hands were shaking because I hadn’t eaten for over fourteen hours. I hadn’t even noticed the time passing. And I guess another positive is how seriously I take things – my relationships, my commitments, my words, and so on. Nothing is flippant to me. I mean, I can be funny and silly but I take life seriously. Everything that I invest myself in matters so deeply to me and I never want to give anything less than my best. All of these things do have negative side effects if they go too far – which they often do – but overall, I consider them to be positives.
How do you think things would’ve been different if your ASD had been recognised when you were younger?
I mean, who knows? I don’t think we can ever really know the answers to questions like these, although I’m fascinated by the ways life might’ve turned out had this happened or that not happened. I’m not sure, to be honest; there would obviously be so many differences. But the biggest one that sticks out for me is that I wouldn’t feel so stuck between a neurotypical world and an autistic world, especially identity wise. I often feel like I have two sides to myself constantly pushing against one another and like I’m trying to find a place in the world where I don’t just have to be one part of myself, where I can be all of myself. I mean, I know everyone’s trying to find their place in the world and that most people don’t often get to be their whole selves but I feel very conscious of the two worlds that I don’t quite fit into and end up feeling like I don’t fit anywhere. So I think the obvious thing for me would be that I think my identity wouldn’t feel so fractured because growing up knowing I was autistic would’ve meant that my personality and my identity evolved with that already present, rather than trying to fit everything together later on, if that makes sense.
How do you feel about taking various medications and going to different forms of therapy for years now? How do you think those have affected you?
It’s an ongoing, exhausting part of my life and I do sometimes wonder whether any of it has made any difference. But then I think about it properly and despite all the awful medication experiences, there have been some really great ones: I wouldn’t have made it through my BA without the Phenelzine, wouldn’t have made it this far through my MA without it. And sometimes it feels like therapy only uncovers more problems but then I remember how many empowering conversations I’ve had with my therapist, how many strategies I’ve learned to help me manage not only my struggles but my life in general. There have been more ups and downs than I can count but I honestly don’t know where I’d be without them.
What do you think the hardest part of living with ASD is?
This is a really difficult question to answer. Part of me wants to answer with ‘living with ASD’ but that’s not helpful. There are so many things I could say: the anxiety; the fatigue; feeling like I blend in enough to fit in casually but feel too different to fit in on a deeper level; my limited ability to be independent; sensory sensitivities… The list goes on. But I think, overall, the hardest part is feeling like the life I want to have is never going to be possible for me and I don’t mean in the being-a-musician-is-a-risky-career-path way; I mean that, as an autistic person, I will not be able to do the things required of me to do music. It’s a terrifying prospect because I cannot imagine my life without music at the forefront. There seems no point to living otherwise. I know that sounds overdramatic but given the intense emotions I experience as part of being autistic, that is just how I feel. To an overwhelming degree.
How do you feel your life as an autistic person is different to those of your neurotypical peers?
I can absolutely recognise that we do go through a lot of the same things, albeit often in different ways and according to different time frames. But then there are definitely significant differences between my life and the lives of most of the neurotypical people around me. I feel like my life is smaller, limited. I’m sensitive to food, loud noise, large groups of people, and I struggle with low energy levels, which all make it difficult to keep up socially, so I often feel like I’m on the outside. I also find myself constantly comparing my level of independence to that of my friends: so many of them – if not all of them – have moved out (even if they’ve moved home during the pandemic), lived with friends or alone, have jobs, operate as independent adults. And I’m just not able to do that. Every day, I have to ration my energy down to the smallest sliver and it’s just not physically possible for me to do any of those things with the amount of energy I have to allocate out to all the tasks required in a day. And that’s as things are now, living at home, let alone if I was living alone and taking care of myself without any help. These things are some really big issues for me and I do find that I isolate myself sometimes so that I’m not being constantly reminded of them.
Are your relationships with your neurotypical friends different to your relationships with your autistic friends?
I think there probably are – to a certain degree, at least – but for the most part, I think it’s not that different to how we relate to each different social group we interact in. We connect with different people for different reasons so while the underlying connection to my university friends is music, the underlying connection to my autistic friends is based on our shared experiences as autistic women. But all of those connections are strengthened by other things, other commonalities and time spent together. So while I initially connected to my autistic friends because we are all autistic – and those similar emotions and experiences and struggles are an important part of our relationship because we can connect to and support each other in a very specific way – our friendship has grown a lot from there, just as every friendship grows.
How do you feel parents can be most supportive to a young adult with ASD?
I have a couple of things I’d like to include here, things that have been invaluable to me over the years:
So there we go. If you guys have any other questions for me or my Mum about living with and managing my ASD and mental health problems, please get in contact and we can always do another of these posts. I hope it was helpful!
Category: about me, anxiety, autism, chronic fatigue, diagnosis, emotions, food, medication, mental health, music, therapy, tips, treatment Tagged: advice, advocate, advocating, anxiety, asd, autism, autism diagnosis, autism spectrum disorder, autistic, autistic adult, cfs, chronic fatigue, chronic fatigue, diagnosis, emotion, fatigue, focus, friends, friendships, hope, hopeless, hopelessness, independence, late diagnosis, low energy, medication, mental health, mental illness, mother, mum, neuroatypical, neurotypical, parent, parenting, parenting autism, parents, support, therapy, treatment, what is
Posted on August 8, 2020
Trigger warning: This post contains details of an emotional breakdown and mentions of self harm.
So results day is coming up. The timeframe is much as it ever was: school grades will be released as planned: A Level results will be released on the 13th August and GCSE results will be released on the 20th August. Degree results tend to depend on the specific university. Despite all of the upheaval over the last several months and the changes made to the expected academic year, many people still took exams of some kind, worked hard on projects or coursework, and pushed themselves to attain the highest marks they could so, regardless of the unusual circumstances, the anxiety around these days is no doubt mounting.
As I’m in the middle of my course, I’m not currently awaiting any grades. I completed my second module back in April and received my marks not long after. But every August (and to an extent, January, when some modules are assessed), I think of all those anxiously anticipating those numbers or letters that they’ve been working towards for months, that their lives have revolved around for so long (not a healthy mindset, mind you, but one that society has entrenched in us and one that I’d like to talk about further at a later date). I think of those young people and hope that, whatever grades they have received, they are coping in a positive and healthy way.
What with my GCSEs, some in Year 9 and some in Year 11, my AS Levels, my A Levels, all the results during my degree, and now my Masters, I’ve had many, many a results day. And the majority of them have been absolutely fine, if not better than fine. Some of them have been downright amazing. But I do have one very negative experience that I think is important to share because chance are, at some point or another, we will all have a bad results day that comes as a shock. So I want to tell this story and then share some advice for dealing with a similar situation…
It was a chilly morning in March 2013 and I was anxiously awaiting the release of the Autumn module results with my friends. The only course I’d had an exam in was Physics and although I’d found it difficult, I finished it feeling like I’d done okay. Having been absent for a lot of secondary school due to ongoing illness, I’d missed out on a lot of foundation material so I’d found the course difficult but during the most recent parent-teacher evening, my teacher told us (me and my Mum) that she had absolute confidence in my abilities and that I was on track for a high grade. So when I opened my results and saw the little printed ‘u,’ I was initially confused. Surely it was a mistake. I’d always gotten good grades and my teacher had said such positive things. I waited restlessly for the mark to be confirmed and when it was, it felt simultaneously like everything went still and like everything was crashing down around me. I made my escape and headed for the more secluded of the two toilet blocks – I felt like every emotion I was feeling was visible on my face and I had no idea how to talk about it or how to pretend that I was fine. I needed to be alone.
I was crying before I even made it into the toilet stall and I sat on the lid, sobbing so hard that my chest hurt. I was gasping for air but it was like my lungs had pinprick holes in them, the air rushing straight out again. Even to this day, I’m not sure I can explain exactly what I was feeling. It’s not especially subtle and sounds very dramatic but it felt like the world was ending. I felt like a failure and I felt like the only thing people would see when they looked at me was a failure. All I was was this ‘u.’ All I was was ‘unsatisfactory.’ I couldn’t move past that thought. Everything else disappeared.
I don’t know how long I sat in that cubicle, crying and self harming, before my friends tracked me down. I wanted to stay there and hide forever but somehow, I dragged myself up and walked out to face them. I still remember the shock on their faces; I still remember looking at myself in the mirror, my face a mess of thick, mascara stained tear tracks and my arms covered in scratches. I looked as bad as I felt.
One of my best friends – someone I still consider a good friend despite the fact that we don’t see each other as often as we used to – took control of the situation, taking me off campus to a coffee shop where she gently coaxed the story out of me over hot chocolate. We both had to go back for classes but she arranged for us to talk to a mutually beloved and admired teacher at the end of the day. I wasn’t convinced but I was operating on autopilot, drained of the will to protest. So after my lesson (a lesson in which I didn’t say a word), we went to see this teacher and in her typical fashion, kind but direct, she told me about some of her experiences and talked me through my options. Then I went home and didn’t return for over a week.
It’s worth noting that my mental health had been deteriorating exponentially over the previous year, so this happened at a time when I was completely unequipped to handle it and it was a catalyst for a lot of big decisions. I dropped out of the physics course, partly because I wasn’t mentally healthy enough to manage the number of courses I was taking and partly because I was so distressed by the experience that I felt completely incapable of going back into that classroom and continuing with the course. Just thinking about sitting in that room triggered anxiety too extreme to function. And I can admit now that there was some shame involved too: I couldn’t bear the thought of my teacher and my class looking at me and seeing a failure. So I dropped Physics, completed the rest of my courses, and started seeking professional help for what were now obvious mental health problems.
To this day, I still struggle to open exam results. I work extremely hard and then, when the results are released, I’m very careful to open them at a time when I feel emotionally equipped to handle whatever they’ll say and when I have the time to process the emotions that I’ll potentially experience. I’ve talked about this a lot with my therapist, in general terms, but then we talk about it every time new results loom. Not long ago, she referred to the experience as ‘a trauma’ and the relief of having it validated for the distress it caused and continues to cause was so overwhelming that I swear my heart stuttered in my chest. After having so many of my experiences (and the ongoing problems they caused) invalidated, it was a really emotional moment. That day had a massive effect on my mental health and my relationship with education and still triggers debilitating anxiety.
Not all results days are like this. In fact, most of them aren’t and I hope that you – you, reading this – never have to go through an experience like this one, but just in case you do, here are some of the things that I’ve learned about coping with difficult results…
IN THE MOMENT
ONCE YOUR EMOTIONS HAVE SETTLED
Despite the trauma of that day and the vivid images that come to mind whenever I recall it, there are three things that I actively choose to focus on:
This post turned out to be a lot longer than I’d intended but I hope it has been somewhat helpful. I hope you remember that whether your results are good or bad, whatever you feel is valid. You have spent years working towards this moment and it’s natural and totally okay to have strong feelings about them. It would be odd if you didn’t. You’ve worked hard for this. So feel what you feel and do what you need to do to make sense of this big, messy experience that you’ve gone through. It will be okay – maybe not in the way you expect but it will be okay. I can promise you that.
Category: covid-19 pandemic, emotions, event, meltdowns, mental health, self harm, therapy, tips, treatment, university Tagged: a levels, advice, anxiety, as levels, asd, autism, autism spectrum disorder, autistic meltdown, coping skills, coronavirus, covid-19, exams, fail, failing, failure, feedback, friend, friends, future, gcses, grades, kindness, meltdown, mental illness, pandemic, panic attack, processing emotions, resit, resits, results, results day, safe place, school, secondary school, self injury, sixth form, sixth form college, talking, teacher, trauma, traumatised, trigger, trigger warning, tutor, tutoring, tw, undiagnosed autism, validation
Posted on August 1, 2020
Since the pandemic began, many people seem to have been having trouble sleeping, from not getting enough to getting too much to having vivid and often scary dreams. It’s been well documented – scientifically and anecdotally via social media. I’ve had problems with fatigue for years but over the last several months, my struggles in the sleep department have dramatically increased and so I thought I’d do a bit of research into the subject and see how my experiences compare to those of others.
SLEEP
We all know that sleep is massively important to our wellbeing. It’s vital to the functioning of our immune systems, the health of our organs (especially our brains), and the maintenance of our mental health to name a few. The ideal amount of sleep ranges from person to person but most adults need seven to nine hours in order to perform at their best, with children and teenagers requiring even more. But during the pandemic, most people are getting far less than the amount they need, making it even more difficult to handle the stress and uncertainty that have become the norm over the last several months. Personally, I’ve spent much of the pandemic and lockdown either getting less than five hours sleep or getting nine hours but waking continuously and struggling to get back to sleep.
It’s not surprising that the pandemic has had this effect. The loss of time anchors like scheduled work hours, anxiety over you or your loved ones getting sick, economic instability, isolation, and increased screen time are all factors that are contributing to this surge in disturbed sleep and continuing lack of sleep can cause real problems. In the short term, it can become difficult to concentrate and make decisions and can contribute to mental health issues such as anxiety and depression. I’ve definitely experienced these effects (despite already struggling with anxiety and depression, they’ve both become much more significant and life altering since the pandemic began). In the long term, it can put you at risk for dramatic and dangerous health problems.
Fortunately, there has been a lot of research into sleep and the factors that affect it…
ADVICE ON IMPROVING YOUR SLEEP
STRANGE DREAMS AND NIGHTMARES
Along with difficulty sleeping, a significant number of people have reported struggling with nightmares, or more nightmares than usual, and I’ve definitely experienced this phenomena. Here’s a few examples of the dreams I’ve been having:
I also often wake up feeling unsettled and anxious, sweating from dreams that are already fading, disappearing before I can figure out what had happened in them.
There are multiple theories for why we dream but the most common seems to be that, while we’re sleeping and our consciousness is resting, our subconsciousness is processing the events of our day, the big events in our lives, our emotions, our stresses and anxieties, and so on. We’re all obviously dealing with elevated levels of stress and intense emotions during this time so it’s not surprising that our brains are working overtime trying to make sense of it all, producing vivid and often weird or disturbing dreams. Our brains are trying to process something that it has no context for.
While the exact cause and content of these dreams is still being debated, there’s a lot more research into why we feel like we’re dreaming more in the last several months. On average, we dream four to six times a night but most of the time, we simply don’t remember them; but due to the disturbed sleep that many of us are experiencing (caused by stress, massive changes to lifestyle, and social isolation to name a few), we’re waking up during our dreams and that’s why we’re remembering them. Therefore, it seems as though we’re having more dreams when really, we’re just remembering more of them.
If you’re interested in sharing your experiences of these types of dreams or learning about the dreams of others, a website, I Dream of Covid, has been set up to do just that. You can submit your own dreams and read through the dreams of others. It’s really fascinating.
Here is a fascinating interview with Dr. Deirdre Barrett, the assistant professor of psychology in the Department of Psychiatry at Harvard Medical School, about pandemic dreams. She obviously has a much greater understanding of dreaming and of these dreams and offers some valuable thoughts and advice. She’s also running a research study into these dreams that involves an open survey where you can share your experience of pandemic dreams, adding to her data if you feel comfortable doing so and want to help.
TIPS FOR MANAGING QUARANTINE DREAMS
Considering the fact that these dreams are most likely helping our brains (and therefore our entire beings) cope with this incredibly stressful, uncertain period of time, it’s not necessarily in our best interests to try and prevent or reduce these dreams. But, having said that, I’m pretty sure we’d all rather not have to experience them, remember them, or have them hang over us. So that leaves us with the option of attempting to avoid remembering them. Here are some tips that will hopefully help in that endeavour:
So here is what I’ve experienced and learned about sleeping and dreaming during the pandemic and subsequent lockdown. It’s been a really interesting blog post to put together. I hope it’s helpful and/or interesting and I wish you all sweet sleep and sweet dreams.

SOURCES
Category: about me, covid-19 pandemic, emotions, self harm, tips Tagged: advice, anxiety, anxiety dreams, coronavirus, covid-19, disturbed sleep, dream, dreaming, dreams, insomnia, lockdown, nightmares, pandemic, quarantine, sleep, sleeping

Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.
Finding Hope