Posted on June 26, 2023
It’s been a long time since I did a Week In My Life post but I thought they’d be fun to revisit. I don’t really have typical weeks anymore – every single one looks different with all of the different things I’m doing and experiencing – but I thought that might add to what makes them interesting; the format remains the same but the contents will always be completely different. This was a super busy week because, on the Monday morning after it ended, I was flying out to Germany so I had to get a lot of stuff done; there could be no putting it off and my ADHD brain did not like that. So it was stressful and busy and chaotic but there were also some really cool, fun, joyful moments too. So it was an interesting one to record.
The week in this post started on Monday 22nd May and ended on Sunday 28th May.
MONDAY
I was up at eight thirty and pretty much straight out to the hairdressers to have my hair coloured in preparation for going to Germany (I’d had it cut the week before). I find it takes several days to settle, for the sharp lines to soften and the colours to blend together nicely. I get so used to seeing it faded (because it’s expensive to get redone – I often top it up out of a box but needed it to look particularly nice on this occasion so didn’t) that seeing it fresh and bold is shocking, in the best way. I love it; it looks amazing every time and I can’t believe that I ever considered doing something different with it (apart from wanting blue hair because who doesn’t). It makes me feel so much more confident; it makes me feel like me.
Back home, I got stuck into some admin work. It took a lot of effort because my brain really didn’t want to do it but I got the necessary emails sent, submitted my Amanda Tapping story for her livestream (which I wrote about in my last post in case you missed it), did some diary catch up, and worked on several upcoming blog posts. I feel like there is never any time to breathe anymore, like I’m always only just keeping up so there isn’t even a moment to stop and think before moving onto the next thing. It’s really stressing me out.
When I had a brief look at social media, Twitter specifically, because of it being Mental Health Awareness Week, all I saw were the usual vague platitudes, corporate statements that didn’t mean anything, and pictures of the royals going to various events. The whole thing infuriated me and I started ranting, tweet after tweet until the thread was barely coherent and I nearly posted it but then I stopped and thought about what I was doing. The thoughts were rushed and frustrated, it’s so easy be taken out of context when you have so few characters, and Twitter can be a pretty toxic place. So I saved the tweets and resolved to elaborate on the thoughts in a better medium, like this blog (which I did and it turned into this post.)
I spent the evening packing since I was going to London the next day and then went to bed relatively early for me, around midnight. But unfortunately, I couldn’t sleep, despite doing everything that usually helps (a routine I have long since refined); I couldn’t seem to relax, my whole body shaking. I was still awake at four, practically vibrating with tension even as I tried to relax enough to sleep. I’ve had sleep paralysis before and it wasn’t that so I don’t know what was going on; I just kept finding my jaw clenched, my hands in fists, and even my toes curled. It was hideous and exhausting.
TUESDAY
I struggled up at nine thirty, got myself showered and dressed, and settled on the sofa with my laptop. I had some more admin work to do, more emails to send, and so I worked through that list before taking a break and scrolling through social media for a little bit. Then I spent several hours working on blog posts and an academic paper about Taylor Swift’s songwriting that I had to submit before I left for Germany; the paper itself was already written but I had a list of edits to work on plus two re-recordings and a new album to integrate into the existing relevant parts of the paper. I don’t mean to be so cryptic but I don’t want to talk too much about the specifics of it until there’s more certainty surrounding the project; it still feels very up in the air, to me at least. But maybe that’s just because it’s the first time I’ve done anything like this.
Mid-afternoon, I had therapy. I don’t want to get too deeply into what we talked about; that is very personal after all. But we did talk about all of the things I had to do before leaving for Germany, as well as how I was going to handle the trip to Germany itself. Sometimes my therapist brings a friend’s dog with her, which is always a bonus. I love her and she loves me and we have some great cuddles, which are very good for balancing out some of the hard stuff we talk about. But no such luck that day (it’s fine though – it’s not like I go for the dog). We finished on time and I managed to get to the station in time to catch my train. It isn’t a long journey but I filled the time, working on blog stuff. I had to make every minute count with so much to do before the week ended and I headed off to Germany.
I got off the train at Victoria station to a very strange sight. I’d paused several feet beyond the barrier to rearrange some of the stuff in my hands and pockets and saw a man standing with a wheelchair and a dog. As I stood there, he encouraged the dog into the wheelchair and it jumped up, turning around and sitting down like it knew exactly what to do. And then, out of his pocket, this man pulled a lizard – a bearded dragon, maybe – and placed it on the dog’s back. Again, it was like both of these animals had done this a hundred times and knew exactly what they were supposed to do. And off they all went, the man pushing the two of them in the wheelchair. It was so surreal to witness. I got the rest of my stuff rearranged and headed for the tube station, fascinated that nobody else seemed to have found this a strange moment to be present for. But then it is London, I guess; everyone is very ‘stay in your lane.’ The whole situation was just so bizarre and I was very aware that I was probably watching something that I’d never see again.
Usually I stay with one of my parents when I do an overnight in London but she already had someone staying so there wasn’t room for me. I ended up staying with family friends – as did my Mum actually since she was was working in a school in London, starting early the next morning – which was really nice because I hadn’t seen them for ages. So it was really nice to catch up. We were all tired and had early starts so we didn’t last long (and had to create a schedule to get everyone in and out of the bathroom in order for everyone to leave on time, which I don’t think I’ve had to do since I was a teenager in secondary school). It took me a while to decompress and go to sleep but it was still quite early by my standards, thank goodness.
WEDNESDAY
I had to get up at half six to get ready, which is most definitely the earliest I’ve had to get up in years. I had a shower, got ready, had some breakfast, and headed for the underground. An organisation I’m a part of, The F List, which supports female and gender minority researchers in music research, particularly research that supports gender equality in music and music research was holding an event, The F List Gender in Music 2nd Annual Research Hub Conference, at my university and I was keen to learn as much as possible – my brain finds learning new things positively addictive, something that I don’t think is uncommon for people with ADHD – even if I was a bit nervous about how long I could stay focussed for. But fortunately that wasn’t too bad and they’d made accommodations for anyone who needed them, although they were very neurodivergent sounding accommodations (as it turned out, there were so many neurodivergent people there that I was starting to wonder if we were all members of the club). As they said on their website: “The F-List Research Hub aims to expand and better introduce the existing feminist and interdisciplinary collective of researchers, dedicated to evidence-led activism which aims to create an environment in which women and gender expansive people in the music industries will be able to more successfully start and sustain their music careers for longer.” And the theme was ‘identity’: “Identity is a central theme in feminist research, which sees ‘who we are’ intimately entangled with ‘what we research.’ The definition above is deliberately broad and (we hope) inclusive to all who seek to research gender issues in music.“
They ended up asking me to write the blog post for the event, which was really exciting. I would be taking notes all day anyway so I just added some extra notes about how the event worked, how everyone socialised, how things felt, in order to sum up the day accurately. We came up with a plan for what the blog would focus on and how long it would be and I played around with it in my head as I listened to the speeches and presentations.
Professor Sophie Daniels, one of the directors of The F List, the head of the songwriting program at ICMP, and my tutor for years, gave the keynote speech, which was really cool. This is what I wrote for the F-List blog because I’m not sure I could say it better: “After a bit of mingling, the day began with the Keynote speech from Professor Sophie Daniels, where she discussed, amongst other things, her career in the music industry, her founding of the songwriting program at ICMP, her artist project, Liberty’s Mother, and it’s associated advocacy work, as well as her research into why we write songs. I first met Sophie in 2014 and she was my teacher on and off for seven years while I studied at ICMP; so while I knew much of what she was sharing, it was really insightful to hear it presented this way, through the lens of feminism, particularly in the music industry and music education. Sophie has always inspired and supported me – as a songwriter, an artist, a researcher, a mental health and Autism advocate, and, ultimately, as a person – and so it was very special to watch her give the Keynote speech.” And it was: it was really special. I will never get tired of hearing ‘I Can Love You From Here.’ It makes my heart ache now just as it did when I first heard it eight years ago.
It was a lot of information but the presentations were short, about fifteen minutes each, which was the perfect length for my ADHD brain and each one was really interesting; I don’t know if it’s the neurodivergent brain but learning new things is always fun for me. The topics ranged from Trans and Non-binary inclusion in the music industry to support for those with ADHD in the music industry to exploring black feminism in the music industry to investigating the interwar generation of women composers at the Royal College of Music, as well as a conversation with the CEO of the Independent Society of Musicians. At one point, she talked about how badly the arts are treated and how they’re so important because they give life meaning: “They lie at the heart of what it means to be a human being.”
Oh, and I greatly enjoyed being introduced to this song…
I found all of it interesting – I really did – (although I did need some time in the quiet space because it was a lot of information and a lot of noise) but I think I was most engaged by the presentations on support for neurodivergent individuals in the music industry, by the one on the emerging trends in the careers of women in the music industry, and the one investigating the interwar generation of women composers at the Royal College of Music. I did wonder whether my Granny would actually be part of that group but when I worked it out, I realised that she wouldn’t have enrolled until after the end of the period of study. It would’ve been so bizarre if her name had appeared in that research.
When the presentations finished, we congregated in the attached cafe to socialise and network, which turned into a commemoration Tina Turner dance party, which was a fun if bizarre way to end the day. It was hard to leave: it was such a nice group of people plus I was dreading the long journey home. But it was a good day; I learned a lot, I fell into some really cool opportunities, and spent time with friends, old and new.
I did eventually make my way to the station and catch a train home. My Mum very kindly picked me up – I was beyond exhausted from so much standing and socialising and focussing all day – and when I got home, I went straight to bed. I had a look at social media for a while, decompressing from the outside world, before going to sleep around one, which isn’t bad for me at the moment.
One of the opportunities that came out of the day was the chance to do the write up – a blog post – of the day. You can find that here.
THURSDAY
I spent most of Thursday at my laptop, working on my Taylor Swift paper. I was really on a roll; I felt like the Kermit the Frog at a typewriter meme. I had already been writing and making progress with it but I hadn’t really managed to get on a roll until that morning and having finally hit my stride, I was having a blast. I was expanding on ideas already present in the paper and building in new ones; the only problem was that I was just increasing the word count and the task of cutting it down was looming. But I was enjoying the fun parts while they lasted and I vaguely resented being interrupted when I had to go out.
It’s been a really long time since I had my last appointment with my psychiatrist, although we’ve stayed in touch. He was in a new office – with a gorgeous view of both the Downs and the sea – and it was much nicer than the last one, which had felt incredibly medical and sterile. I like this one a lot more. And, in the waiting room, there was a painting that I instantly fell in love with: a seascape by a local artist called Sara Hill. I would love to own something like this, to get to look at it everyday. It was completely gorgeous and I found it very soothing to look at, which I suppose is fitting for a psychiatric office.

The appointment went well. My psychiatrist and I talked through my experience with the Phenelzine and what has improved and what’s still a struggle. I’d wanted to discuss increasing the dosage, which we did. It had been too much last time – I felt very overstimulated all of the time – but I thought that, given that I’ve been trying to climb out of a deeper, darker place, a higher dose might be what I needed to make it that extra distance. We talked through that idea – and how much I want to write more again, which I just haven’t been able to – and he agreed. And, proving how well he knows me after all of this time, he suggested we judge the effectiveness by how much I’m writing. Sounds good to me.
Back home, I tried to re-harness my previous focus on my paper and while it wasn’t quite as effective, I did manage to get another good chunk of work done. I even had some time to do a bit of blog writing since I doubted I’d have much time to write while in Germany, I needed to have something prepared for the Saturday at the end of the trip. By the time I went to bed, I was completely exhausted and my brain felt vaguely like I’d put it in the microwave for too long.
FRIDAY
Despite going to bed so late, I was able to drag myself up early for a very important Zoom call. I don’t want to talk about who it was with and what it was about yet, not until things are more certain. But it was a very exciting call and, all being well, some awesome life things will come out of it. That’s all I’ll say for now.
I didn’t have long until my next Zoom call so I spent about ninety minutes or so working on blog stuff. I just needed some decompression time and I find blog post writing very soothing for some reason; I think it just allows my brain to turn over an idea, over and over and over until it makes sense, and getting the words into a satisfying rhythm.
I had a really nice Zoom call with one of my best friends and we ended up talking for about two hours. We can talk about anything, from movies to the really big stuff in our lives, and we can talk for days without needing a break; we can just go off on these tangents that go on for hours and then we eventually backtrack to our original conversation topic, only to go off on another tangent. We have a lot in common and we have so much fun together. At one point, we tried to figure out how we became friends – having met on the MA – but we couldn’t: it seems that we both thought we were already friends and just skipped the whole ‘becoming friends’ part of the friendship, which is actually pretty on brand for us now that we are really good friends. I have no idea if that makes any sense but that’s how it is.
We hung up so that I could get ready and go to therapy. Again, I don’t really want to talk in detail about what we discussed but, in general, we talked about going to Germany, the things I was anxious about, and how I might manage them. I wasn’t feeling too stressed (which turned out to be ridiculous because I found the whole trip incredibly stressful) so it wasn’t too bad.
When I came out of therapy and checked my phone, I saw that Taylor Swift had made an announcement, the release of Midnights (The Late Night Edition) and the new song, ‘You’re Losing Me.’ Someone had already shared it online. Had the song been released somewhere where I could listen to it legally where Taylor would get paid for my purchase or stream, I absolutely would’ve done so – I’ve always felt very passionate about that – but since it’s only available on a CD one can buy at tour dates, I don’t feel bad listening to it online. And what a song it is; it immediately joined my 2023 in Songs post because I love it so much, especially the lyrics. I’ve talked about it more there (I’ll add the link when that post goes up in December) but the ongoing medical imagery is heartbreaking, the way the bridge just keeps building is one of my favourite Taylor techniques, and the imagery in the lyrics all had me absolutely hooked (I particularly love “Remember lookin’ at this room, we loved it ’cause of the light / Now, I just sit in the dark and wonder if it’s time,” “And I wouldn’t marry me either / A pathological people pleaser / Who only wanted you to see her,” and “Do something, babe, say something / Lose something, babe, risk something / Choose something, babe, I got nothing / To believe / Unless you’re choosin’ me / You’re losin’ me”). It’s a gorgeous, gorgeous song and weeks later, I’m still listening to it over and over. So that was a moment to have missed because of therapy.
Back home, I went back to working on my paper. One of my parents stopped in for dinner and we had a good catch up before I got back to work. Then I had some decompression time, writing more of my Mental Health Awareness Week blog post before going to bed.
SATURDAY
I spent the morning working on my paper before catching a train to London. I used the trip to keep writing and then navigated the tube system to get to the Thin Air exhibition at The Beams near London City Airport. And it was absolutely stunning…
The exhibition was made up of several different rooms, designed by different artists or artistic collaborations. I didn’t like all of them but of the ones I liked, I absolutely loved:
It was really cool and I’m really glad we got to see it before it closed (while we were in Germany). I would’ve stayed longer if I could’ve but I still had so much to do and they do encourage you to keep moving through the rooms.
Then it was back on the train home and even though I was exhausted, I continued working on the paper and on the upcoming blog posts. I also managed to reply to some of the messages I’d been unintentionally procrastinating over, accidentally pushing them back in favour of getting more work done. So that felt like an achievement too. I was pretty much getting things done out of sheer willpower – something that absolutely does not always work but did this time for some reason – which I was very relieved by. Of course, so pleased to be on a successful streak and unwilling to break it, I ended up going to bed much too late.
SUNDAY
It was a very goal focussed day. I managed to get my blog post of the week – So That Was #MentalHealthAwarenessWeek… – done and published relatively early in the day and then I moved on to the piece about The F List conference. I had all of my notes from the actual day and I’d been making notes since then: thoughts that felt important to include, anecdotes that would make it more personal, and so on. I got that done mid afternoon, I think, and sent it off (they really liked it and it was published and shared a few days later).
Afternoon and evening, I packed for Germany. I was going to be there for a week but I am a terrible packer – I just find it really hard. I wonder if that’s an ADHD thing, given that it’s an organisation and planning based skill. Interesting; I’d never thought of that. I don’t know but possibly. I’ll have to do some research. Anyway, as I said, I’m a really bad packer (I once packed for five weeks in Australia two hours before I left for the airport – the dread and procrastination were so bad) so I struggled through that as a task. Eventually I got that done, with probably much more than I’d need.
I spent the rest of the evening trying to finish my Taylor paper. This edit was essentially finished – apart from one section, which I couldn’t work on until I got some of the literature they’d promised to send me (and now have sent me) – but it was way over the word limit and, as hard as I tried, I couldn’t get it down without cutting out significant parts of whatever point I was making or the evidence for it. But I kept trying and trying and trying, as well as tidying the whole thing up. In the end, around two in the morning, I decided that I would send it as it was and ask the organisers – all of them accomplished academics – for their advice on the word count. I’ve never done this before but they have; hopefully they can help me get it down to the required length without compromising the content on the next edit. So I stopped at two and went to bed, my laptop on the bedside table so that I could send it first thing in the morning.
It was a very anxious week: there was the pressure of trying to get everything done, the unknowns of the conference, and the anxieties around going to Germany. It was hard. But it’s also really nice to be productive again, to be working and producing, even if my mental health and neurodivergence do make that a struggle sometimes; over the last couple of years, I’ve been so paralysed by my mental health problems – by my depression and anxiety specifically – that I’ve barely been able to do anything. So just to do things at all, let alone the amount of things I’ve been doing, is kind of amazing to me.
Category: adhd, anxiety, autism, body image, book, depression, emotions, family, medication, mental health, music, research, sleep, special interests, therapy, treatment, university, writing Tagged: a week in my life, academia, academic, academic research, adhd, amanda tapping, art, art exhibition, art installation, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, blog, blog writing, body image, conference, dosage, dose increase, exhibition, friend, friends, friendship, gender in music, germany, hair, hair colour, hair dye, hairdressers, immersive art, insomnia, installation, liberty's mother, light art, light installation, livestream, london, medication, medication increase, mental health, mental health awareness, mental health awareness campaign, mental health awareness week, mental health awareness week 2023, mhaw, mhaw 2023, midnights, midnights 3am version, midnights album, midnights album late night album, neurodivergence, neurodivergent, neurodiverse, neurodiversity, packing, pain, phenelzine, psychiatrist, psychiatry, rerecording, rerecordings, research, research conference, research paper, sleep, social media, songwriting, sophie alagna, sophie daniels, sound art, taylor swift, tension, the beams, the f list, therapy, thin air, travel, travelling, week in my life, wiml, writing, you're losing me, zoom
Posted on June 12, 2021
It’s been a while since I last talked about my ADHD so I thought it was time for a little update. A lot has happened since I was diagnosed, some of which I thought might be worth sharing…
It was a lot to process that I did my BA and have been doing my MA with undiagnosed and unmanaged ADHD but the diagnosis had me looking back over the last few years and a lot of things started to make sense: why I’d excelled in certain areas and struggled desperately in others. Part of me was impressed with how I’d done, factoring in this new obstacle that I’d been unknowingly battling against, but on the other hand, it makes me sad that I’ve had to, you know? It makes me sad that I’ve had to work against my own mind all this time without anyone noticing or supporting me – in this sense, at least. Life could’ve been so much easier.
And now I have to finish my Masters unmedicated.
Because I take Phenelzine for my depression, there’s the risk of interactions with stimulant-based ADHD medication so I can’t take those; both medications have the potential to raise a person’s blood pressure and together, that could be very dangerous. However, given the extreme drowsiness I experience as a side effect of the Phenelzine, I can’t take a non-stimulant medication either due to the high chance that they’ll add to the drowsiness. It’s hard enough staying awake and (somewhat) focussed during the day. I can’t afford to make it worse, especially in this final module of my Masters, the one I’ve been looking forward to since I started the Masters. So it looked like a dead end. But I wasn’t giving up at the first hurdle so I did what I always do: I started researching.
After a bit of searching, I found a research paper about a series of studies done, combining medications when traditional routes failed to work. One of those cases detailed a man who only responded to an MAOI (which is what Phenelzine is) and a stimulant-based ADHD medication. He had to continuously monitor his blood pressure but had no problems and continued on the two medications indefinitely, which allowed him to live a normal, productive life. That seemed very promising, as a starting point for discussion at the very least, so I sent it to both my psychiatrist (who’s been managing my medication for years now) and the ADHD specialist.
My psychiatrist was willing to try, provided I was diligent about checking my blood pressure. Despite our initial ups and downs, we have a really good relationship – and we have had for a long time now – and he always takes my thoughts, opinions, and research into consideration, which I really appreciate even if he ultimately opts for a different approach. So that felt good, like a step in what felt like a positive direction.
We didn’t get a response from the ADHD specialist for weeks. To begin with it was just frustrating but as time went on, I started to swing between despair and anger. I felt like I’d just been abandoned, dropped without a word (something that’s unfortunately happened enough times that it’s become a big trigger for anxiety attacks, episodes of depression, and even autistic meltdowns, depending on the situation); sometimes it feels so upsetting that these medical professionals can just go home at the end of the day and leave all of the struggles of their patients/clients behind while we all have to keep living (and suffering) from them. I know it’s not that simple – that they don’t just stop caring, that they can’t and shouldn’t have to work ridiculous hours – but in my desperate moments, in situations like this, it feels hard to feel supported, to believe that they do care, that you’re not just another file rather than a person struggling through each hour.
After some extra complications due to communication problems, we finally heard back and she was saying a categorical no, having had previous patients respond badly to the combination. While I can understand that, I found it frustrating that she wasn’t even open to trying it. I’ve always responded unusually to medications (proven again and again by my experiences with more than fifteen medications/combinations for my depression – the only one that’s worked is one that’s rarely used) so I was frustrated by the brick wall approach she was taking. My psychiatrist was still open to trying and said he’d talked to her about transferring the medication aspect of managing my ADHD to him since he’s been treating me for so long and has a detailed understanding of my history. But she said no.
So that’s it as far as I can tell. Unless I change my antidepressant, (I have to point out again) the only one that’s helped me, I can’t take medication for my ADHD. It’s essentially come down to choosing which of the conditions to treat, my depression or my ADHD, which just makes me feel so upset and frustrated. Treating my ADHD could make a huge difference in finishing my Masters but I’m getting blocked at every turn. It’s almost worst now than before I knew about the ADHD. Before, I was struggling; now, I’m struggling and I know why but I can’t do anything about it. The whole situation makes me so angry, so angry that I couldn’t do the most recent online appointment. I wasn’t in the right headspace and I doubted my ability to be receptive when my emotions were so all over the place.
My Mum took the meeting but it hasn’t changed anything. I’m still not getting any treatment, any support. I feel like I’ve been given this great weight to carry but abandoned to carry it without help or advice. I don’t know what to do. I don’t know how to move forward. I feel like I’ve been let down by someone who’s job it was to help me. Again. It’s upsetting and exhausting and stressful.
I don’t say these things to encourage a mistrust of doctors or because I regret the ADHD diagnosis. I just need to be honest – for the sake of my own mental health – and while I generally try to see the positive, sometimes the situation just sucks. It’s just bad and hard and makes a mess of you.
Category: adhd, anxiety, autism, depression, diagnosis, medication, mental health, music, research, treatment, university Tagged: adhd medication, adhd support, anti-depressant, antidepressants, anxiety, attention deficit hyperactivity disorder, depression, inattentive type, masters degree, medication, mental illness, neurodivergent, neurodiverse, neurodiversity, phenelzine, stress, stressful, treatment, university
Posted on March 31, 2021
Since this is my blog, the experiences are predominately from my point of view but I thought it would be really useful, as well as interesting, to get a different perspective on the same scenario. So, with that in mind plus the fact that most resources are aimed at the parents of young autistic children, I asked my Mum if I could interview her about what it’s like to be the parent and often advocate for a young adult with Autism Spectrum Disorder. I came up with a list of questions and she answered them. I had almost no input on her answers, only to ask for more information or detail if I thought she hadn’t fully answered the question or finished a thought. We’re hopeful that this could be of some help to parents with adult children managing a form of Autism.
I’ve talked about what it was like for me to get a late diagnosis but what was that experience like for you?
The process of getting a diagnosis for you was frustrating at best and distressing at worst. You were very clear about your need to know the causes of your difficulties and so refusal from medical professionals to engage with that need was hard to witness. I needed to do the research, follow up possible assessments and/or therapies and talk about your challenges against a backdrop of suspicion of being overprotective and a distrust of my motives. Even when it became clear that your inability to talk for yourself at the outset was a result of Selective Mutism and your experience with those professionals, I was still met with a resistance to engage with me on your behalf.
Although I’m more able to speak for myself now, what has it been like having to do so much advocating for me?
It always felt like it was my role to do this until you were able to do it for yourself. I wasn’t trying to fix things, just get your voice heard, your experience understood so that the problems you were facing could be addressed and the right support provided.
I knew all the answers to questions you were being asked because we’d talked about it all beforehand. Both before and after your diagnosis, it has just felt like I can be the means to you being heard and hopefully understood as and when you are not able to do it yourself.
As in your first question, this doesn’t always work! And I do often feel frustrated by a refusal to accept my intentions, confusing it with a reluctance to ‘allow’ you to speak for yourself/become independent.
Knowing me but having an outside perspective, what would you consider to be the positives and negatives of having Autism Spectrum Disorder?
This is really difficult for me as all I see is YOU, with all your qualities and all your challenges. Combine this with the fact that each person with ASD presents so differently and I do find it difficult to generalise. Understanding more about women on the spectrum now, I see your very singular focus on anything you set out to do as a positive. I think your intense empathy is a double bind, giving you a compassion that can then often be overwhelming. The biggest negative I see is your level of anxiety. This is often debilitating and always massively exhausting and affects most aspects of your life.
How do you think things would’ve been different if my ASD had been recognised when I was younger?
This is a little easier to answer as I think, from all I see now, knowing about it earlier may have enabled us to access support for you and given you access to specialist resources. Having said that, I wonder if a diagnosis earlier might have ended up giving you a label that meant expectations, both your own and society’s, may have been different for you. Increased awareness of and understanding surrounding neurodiversity is relatively recent.
What do you think is the most important skill or trait when it comes to parenting a young adult with ASD?
This question makes me want to ask you what you feel has been most important but my sense is that being there for you, trying to put aside any preconceptions and opinions of my own so that I am able to really listen and hear what you are telling me, leave aside any of my own anxieties or fears, to support and encourage you to do what you want to do; a combination of protection when things are tough and support to push forward when you feel able.
I also feel it has been important to be prepared to read and research for myself and learn all about the condition so I can share this whenever it feels necessary to inform the argument for support. And to be prepared to persist when first attempts are met with a negative response.
I’ve often talked about feeling like a burden for not moving out or contributing more as a young adult. What are your thoughts on this?
In answering this, I would like to reference a quote here, which I think explains how I feel about this. I found this during one of my searches and thought it was a positive recognition of the difference I see and how it affects your life in the sense of the ‘what’ and ‘how’ you contribute and participate. Keri Opai, a Mental Health Service Award Winner in New Zealand, consulted the Maori disabled community in order to develop variants in language that differ from what he called the “sometimes condescending English terms,” and instead emphasised the ‘gaining [of] strength and ability.’ So the word for ‘disabled’ itself is ‘whaikaha,’ which means to “have strength or to be differently able.” He also spoke of people with autism having ‘their own timing, spacing, pacing and life-rhythm’ and so interpreted autism as ‘takiwatanga,’ meaning ‘in his or her own time and space.’ (Te Reo Hapai, the Language of Enrichment by Keri Opai)
I do understand that you feel this way though but I know that you do what you can when you can, and that this inevitably fluctuates according to what you have going on at any particular time. With the anxiety and fatigue you experience on a daily basis, and your focus being studying at the moment, it just doesn’t make sense that you do more than you are able to, nor that you would move out to live independently, with all the extra demands that would make on you, yet. There is plenty of time ahead for that. Until then, I get to enjoy your company and give you the support you need.
I’ve been taking various medications and going to different forms of therapy for years now. What do you think have been the effects of those, positive and negative?
I have always felt that it would be a combination of therapy and medication that would be likely to be the best way forward, and I think we both agree now that this has been the case. It was challenging to find a therapist that you felt able to work with but once we did, we knew instantly that you could start moving forward, in your own time and in whatever way felt possible, something your therapist has always supported.
Regarding medications, I do have concerns about their effects on you physically as well as mentally and appreciate that living together does mean I can help monitor these effects and see patterns and changes that maybe you can’t.
What do you think the hardest part of living with ASD is?
Again, looking at you, I would say that the hardest part for you, of living with ASD, is the sense of feeling different and feeling left behind your peers; and watching you being so exhausted by managing the mental health issues that have troubled you as a result of the late diagnosis.
Do you feel your life is different because I’m autistic?
Yes, my life is different to what I had expected it would be at this point, but then so is yours. But we deal with that, and make it the best we can, for both of us.
What has been or is the hardest part of parenting a young adult with ASD?
I have often felt very isolated, and criticised for continuing to be your voice when you are not able to speak. And I do worry about the barriers you may face in a world that does not always recognise the assets and abilities of neurodiverse people, expecting autistic people to change rather than have society change the many inhospitable or incompatible environments and expectations that may hinder them.
What help/advice would have been helpful to you at any point?
All the way through… someone willing to believe in my intentions and acknowledge that, I, as a parent, only have your best interests at the core of everything I do.
So hopefully her responses to these questions have been helpful or reassuring to the parents among you guys. During this process, she actually realised that she had questions for me so we decided to do the same thing in reverse and that post will be up tomorrow!
Category: about me, anxiety, autism, diagnosis, medication, mental health, quotes, response, therapy, treatment Tagged: advocate, anxiety, asd, autism, autism awareness, autism diagnosis, autism in girls, autism in women, autism resources, autism spectrum, autism spectrum disorder, autistic, autistic adult, diagnosis, disability, disabled, empathy, fatigue, focus, independence, interview, invisible disability, keri opai, late diagnosis, maori, medication, mental health, mental illness, mother, mum, negatives of autism, neurodiverse, neurodiversity, parenting, parenting autism, positives of autism, selective mutism, therapy, treatment, university

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