Posted on April 2, 2022
Given that the theme for this day was only announced by the UN a week or so ago, this isn’t as prepared as I would’ve liked; I would’ve liked more time to work on it, to organise my thoughts on the topic. ‘Cause this week has just been chaos, both in reality and emotionally: I had to leave my cats at a cattery, pack for my trip to the US, fly to Boston, go to a concert there, and then fly to Nashville, where I’ve been super busy. And all of that has been very stressful. So it’s not ideal but I’ve done the best I could with the time and emotional energy I’ve had.
Given that the theme set by the UN this year is ‘inclusive quality education for all,’ I thought I’d write a bit about my experience in education as a young autistic woman. I wasn’t diagnosed until I was twenty so, while my years in school were obviously affected by my being autistic, we didn’t know that that was the cause.
During primary and secondary school, things were pretty okay. I loved learning so that was never the hard part for me. I was shy – painfully so (P.E. and drama classes were cause for weekly distress) – and I was exhausted by being in school but otherwise I think it was fairly normal. For the most part, I was a high achiever: I learned to read and write well very quickly; I was top of the class in most subjects (some of which I tried hard in but some of which I seemed naturally good at); I was in my school’s ‘gifted and talented’ stream for multiple subjects. I was left to myself a bit, I think; I guess there’s a logic to the idea that you don’t need to help a smart kid be smart but then, in the long run, said smart kid doesn’t learn how to learn, if that makes sense. I picked things up very quickly so no one ever really taught me how to study; once I got to the harder stuff, I started to struggle.
Things were fine until sixth form college, when that problem really kicked in. But still, I pushed through: I worked harder, I exhausted myself further. But I thought there was something wrong with me. I thought I was stupid, that I was missing something; it never occurred to me that something like ASD meant my brain processed information differently, that the combination of the undiagnosed ASD and my all-consuming attempts to keep up were having a detrimental affect on my physical and mental health, or that I wasn’t being supported as I should’ve been. I had individual teachers who were kind and understanding but the institution itself offered no support at all. By the time I was taking my A Levels, I was so burned out and worn down that I was right on the edge of a breakdown. I ended up taking a gap year between the end of sixth form and the beginning of the university as I tried to get a handle on my spiralling mental health.
I went to the same university for both my BA and my MA (although with a few years in between), mostly because it allowed me to pursue my greatest special interest (songwriting) and study it in depth. I was diagnosed with several mental health problems during my first year of the BA and then ASD between the first and second year, which was when my university became more open to supporting me (it is worth pointing out however that I had to fight for almost every step because they simply didn’t understand why I needed what I told them I needed). They had what was called a Student Support Agreement that was supposed to be sent to all of my tutors before classes started so that they knew the difficulties I struggled with and what sort of accommodations I might need but I’d often introduce myself to a tutor and they’d have no idea what I was talking about.
In general, most of my tutors tried to understand; they were as accommodating and supportive as the university would allow them to be. They wanted to know; they wanted to understand; they wanted to make things easier for me (obviously not easier than it was for everyone else but to put me on the same level as my peers so I wasn’t disadvantaged). And while, I don’t mind – and even at times enjoy – educating others on Autism, it took a lot of energy to have those conversations at the beginning of every semester, sometimes multiple times. (It’s also worth pointing out that having those conversations can be really enjoyable when the person wants to learn but it can be a totally different story when you’re having those conversation out of necessity and the person isn’t really engaged.) It wasn’t until the last semester of my Masters that I worked with a tutor who was neurodivergent herself and it was a completely new way of experiencing education; feeling so understood and accommodated was amazing and that was definitely reflected in my work.
But while the individuals were open, for the most part, I felt like the institution wasn’t particularly interested in my experience as a neurodivergent student. It’s a small school so there were never that many of us (or there weren’t when I last spoke to them about it) because there weren’t that many of us in general and I don’t think they saw us as worth investing in (as in, it wasn’t financially worthwhile to educate all of their tutors on Autism and other neurodevelopmental conditions for just a handful of students) despite the benefits it could have for all of the students and for the tutors themselves.
Having said that, when I started the Masters I was introduced to the person brought in to support students with Autism and ADHD. I was feeling really optimistic about going back to uni – that progress was being made – but I hadn’t even known her a month when her actions triggered the biggest meltdown I’d had to date in the middle of a busy London train station, which was a traumatic experience. After that, I never heard from her again and found out from someone else that she’d transferred me back to Student Services without her ever saying anything to me. And all of that was with her training and experience. So I didn’t have a lot of faith in their efforts after that. I’m still talking to them though and I hope that I can still help them make the university experience better for neurodivergent students. They could – and they should – be doing more. With so many neurodivergent students dropping out of university, more needs to be done and I think the starting point is teaching the teachers.
I think it’s worth pointing out that I am in a fairly privileged position: I’m from a white, middle class family with a good support system and I went to good schools throughout my time in education. I was also able to go to university and had support from home that allowed me to do that in the way that was best for me. I was (and am) very lucky. But despite all of that, education has been an incredibly distressing experience.
Ultimately, everyone in education needs to know more about Autism and other neurodevelopmental conditions; knowledge and understanding is the only way that the education experience is going to get better for neurodivergent students. All of these institutions have been built on ableist foundations and I don’t have the answers on how to fix that but I do know that, without the knowledge, nothing will ever change.
Category: about me, anxiety, autism, chronic fatigue, depression, diagnosis, mental health, response, school, university Tagged: accessibility, anxiety, asd, autism, autism acceptance, autism awareness, autism awareness day, autism spectrum disorder, autistic, autistic adult, autistic student, depression, education, inclusive education, inclusivity, mental health, mental illness, primary school, school, secondary school, sixth form, sixth form college, united nations, university, waaw, waaw 2022, world autism acceptance week, world autism acceptance week 2022, world autism awareness day, world autism awareness week
Posted on April 4, 2021
And here we are. It’s the last day of Autism Awareness Week…
Recently – and not just this week – I’ve been seeing a lot of discussion about whether Autism Awareness Month/Week/Day should be Autism Acceptance Month/Week/Day instead. I’ve seen lots of people saying we’re past the point of awareness and that acceptance should be the primary focus. Of course – of course – I think acceptance is vitally important and the way forward but when it comes to the point about awareness, I’m not sure.
Are people ACTUALLY aware? Yes, many people are aware that Autism exists. But… Are they aware that it presents differently in different people? Are they aware that it presents very differently in females to males? Are they aware of how hard many autistic individuals work to mask their Autism and how damaging that can be in the long term? Are they aware of how much anxiety a change of plans can cause? Are they aware that autistic individuals may need more time to process information than their neurotypical peers? Are they aware of what sensory sensitivities are actually like to live with? Are they aware of what is going on for an autistic person when they’re having a meltdown? I’m not sure many people are.
Autism Awareness, in my opinion, isn’t just about being aware that Autism exists. It’s about having an actual awareness about the experience of it, the full picture – as much as you can when a condition can present so differently in each person. So many people – many of them good and decent people – still don’t have a real awareness of what the main areas of difficulty can be for autistic individuals, how they can support their neurodivergent peers, and how they can be allies in the fight against ableism. I think this is particularly important when it comes to institutions – medicine (both physical and mental), education, etc – because in my experience at least, many people in these institutions don’t know much about Autism at all. There has not been a single medical appointment in my memory that I’ve gone to where I haven’t had to explain at least one big relevant area of my Autism. And not just in specific, personal terms but in general this-actually-exists terms. With all of that in mind, have we outgrown the need for Autism Awareness and Autism Awareness Months/Weeks/Days? I don’t think we have.
I’ve seen other people talking about acceptance as more positive than awareness, that awareness comes from a past of seeing Autism as a problem to be solved, an obstacle to be negotiated whereas acceptance is about the future, about welcoming autistic individuals into society rather than sidelining them. I can completely understand this point of view and I don’t disagree, but I think that’s a big leap to make. Can you truly accept something without, at the very least, a basic understanding of it?
Maybe I’m being too literal. But I think it comes down to more than awareness OR acceptance. Maybe it’s both. Maybe it’s a different word altogether. Maybe we should take the lead from Twitter’s #actuallyautistic hashtag and have an Actually Autistic Month to put the focus on the actual individuals with Autism. I don’t know. I’m not going to pretend to be the font of all knowledge when it comes to this, when it comes to Autism. This is just my two cents. I think awareness is still necessary but acceptance is vital to the quality of life of autistic individuals. I don’t think it’s one or the other. I think it’s a topic that still needs conversation and development.
So… awareness or acceptance? I think it’s both. I think it’s awareness and acceptance.
I hope this week of posts has been helpful and interesting! Don’t forget that April is Autism Awareness Month so, where possible, let’s all keep reading and learning and raising the voices and experiences of autistic individuals.
Category: autism, event Tagged: #actuallyautistic, acceptance, actuallyautistic, actuallyautistic twitter, asc, asd, autism, autism acceptance, autism awareness, autism awareness day, autism awareness month, autism awareness week, autism awareness week 2021, autism resources, autism spectrum condition, autism spectrum disorder, autistic, autistic adult, awareness, awareness vs acceptance, world autism awareness week, world autism awareness week 2021
Posted on April 2, 2021
Autism Awareness Day always has a theme. Officially, the UN sets the theme but different organisations also choose their own themes; for example, I know that autistica has chosen the theme of anxiety. The official theme (the one set by the UN) is ‘Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World.’ I don’t feel that there’s really anything useful I can add to that conversation, given that I’ve never been well enough to have what society would consider a proper job and that the career path I’m following doesn’t really involve traditional workplaces. So, instead, I thought I’d write about something different, something that has been a really big deal for me this year.
For so long, I just felt like I was broken. And I felt like I was broken in so many places. I couldn’t understand it. Getting the Autism Spectrum Disorder diagnosis helped but there were still all these cracks, all of these problems that no one could make sense of. I had mental health problems, I had chronic fatigue, I had chronic pain, and so on. Nobody could figure out the whole picture and at worst, I was just abandoned by medical professionals, told that my case was just too complicated. That was the most painful part, I think; these people, many of whom it was their job to help with situations like this, were willing to let me continue to struggle rather than put in the effort and help me. It made me feel like I wasn’t worth helping, the toxic best friend of feeling like I was broken.
But in the last few months, with the help of several new medical professionals and some more diagnostic work, the pieces have all slotted into place and, I think, we might finally have the whole picture. So this is the timeline, beginning in 2016 (I might add dates later but I don’t have them all to hand right now).
(I’ve covered some of this before but I think it’s necessary if we’re talking about said whole picture.)
And suddenly all of the pieces started to click together:
THE MENTAL HEALTH ISSUES (TRD, GAD, OCD, AND BPD) AND ADHD ARE, AT LEAST IN PART, CONNECTED TO MY ASD.
MY ASD AND HYPERMOBILITY ARE LINKED.
THE HYPERMOBILITY LED TO A DIAGNOSIS OF hEDS, WHICH EXPLAINS MY CHRONIC FATIGUE, CHRONIC PAIN, AND OTHER PHYSICAL SYMPTOMS.
Discovering that it’s all connected has been a really helpful and comforting revelation. I’m starting to see each condition as a star in one big constellation and that’s a hell of a lot better than feeling inexplicably broken in multiple places. I still have to deal with everything that comes with each of these conditions, of course, but knowing that they’re all part of the same picture does make my health less draining to think about and manage. It all makes more sense. And I am a person that needs things to make sense. So this is all a really big deal.
Category: about me, adhd, anxiety, autism, bpd, chronic fatigue, depression, diagnosis, heds, mental health, ocd Tagged: actuallyautistic, adhd, anxiety, asd, attention deficit hyperactivity disorder, autism, autism awareness, autism awareness day, autism awareness week, autism spectrum disorder, autistic, autistic adult, borderline personality disorder, bpd, chronic fatigue, chronic fatigue, chronic pain, depression, diagnosis, diagnostic process, ehlers danlos syndrome, generalised anxiety disorder, heds, hypermobile ehlers danlos syndrome, hypermobility, multiple diagnoses, myalgic encephalomyelitis, obsessive compulsive disorder, ocd, social anxiety, treatment resistant depression

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