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 syndrome, 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 syndrome, 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 May 13, 2020
On the 12th of May every year, the Mass Observation Archive asks people to keep a diary for a day in order to capture the everyday lives of people all over the UK. This year, 2020, is the 10th anniversary but we are also living in the midst of a global pandemic, making this year a unique one, to say the least.
I’m a dedicated diary writer and have been for years so this is the ideal project for me. I love the idea of so many people’s experiences in one place, the idea of collecting as many versions of one day as possible and trying to build the fullest picture of it. So I was very excited to take part in this day, even if I’ve recently been floored by one of the most awful periods of depression I’ve ever experienced.
Some important things to know before reading this: I am autistic, struggle with depression, anxiety, OCD, and Borderline Personality Disorder. All of the symptoms get worse under stress. I’m halfway through a Masters Degree in Songwriting. I’m really struggling with the Covid-19 pandemic (particularly when it comes to my anxiety, with the fear that my loved ones will get sick), self isolating with my Mum, separated from my three other parents, my brother and my friends.
I slept badly, waking up at eight with my alarm. I’ve been trying to keep to my pre-lockdown routines and on a normal day, I would’ve gotten up and got to work on something but I had a throbbing headache, probably due to the restless night. So I buried my head under my duvet and tried to hide from the light coming in through my curtains.
Being a part time Masters student means I have an empty semester from yesterday until the end of September and I had all of these plans: practice the songwriting skills I’ve learned this year, establish a recording space at home, and get back to swimming, to name a few. But then the pandemic happened and we went into lockdown and all of my plans went out the window. I’m terrified all the time. Everything feels pointless. I can’t focus on anything. And my creativity – my ability to write songs – feels completely blocked. I’m stuck in this frozen state and I just feel like I can’t breathe. I feel like screaming and crying and hyperventilating but I feel like if I start, I’ll never stop. But even distracting myself is hard. I just can’t make myself care about a TV show or whatever. It all feels too big, like there isn’t enough space in my brain for anything other than this howling fear. And this has only been made worse by the government’s most recent, incredibly unclear statement about easing the lockdown. The idea that the government think this is acceptable when hundreds of people are still dying every day makes me sick with fear. I didn’t vote for them but I at least thought they cared about the people they were governing.
The only thing that I’ve found actually helpful in distracting myself is reading fanfiction. It’s something I’ve found effective as a relaxation technique over the last year, dealing with my wildly fluctuating mental health, starting my Masters, and this pandemic. It’s easier than reading a book because I’m already familiar with the worlds and the characters, which is a relief when I’m constantly exhausted by all this fear. Escaping into a comforting world is just that… comforting. So I spent several hours doing that, reading through old favourites from my teenage years when I first discovered fanfiction. It just gave me a break from everything. As much as possible, anyway.
Eventually though I got up and went downstairs. I thought that maybe working on one of my anxieties would help my overall level of anxiety so me and Mum went out into the garden to do some filming for a music video. My original idea is now impossible with the lockdown, which has been very upsetting because I was really looking forward to it, so I’m having to come up with something new, something that’s been difficult and frustrating because the original idea felt so perfect. I’m not super happy with the current back up plan but I need something. So me and Mum spent several hours filming [I’m omitting some bits here because I don’t want to give away the video if this is what we end up using]. I have absolutely no energy at the moment so I was completely exhausted by the end of it, even though I don’t feel like I actually did that much. I ended up falling asleep in the comfy chair in the kitchen, sleeping for a couple of hours.
I woke up, stiff and uncomfortable and just as anxious. Apparently trying to work through an anxiety didn’t help. Maybe I didn’t solve that anxiety, maybe all of this is just too big.
I had a shower and then settled on the sofa in the living room. There are so many things that I could be doing with my time but I just don’t have the motivation, the emotional energy. I just can’t see the point – what does any of it matter when hundreds of people are dying everyday, when people are losing loved ones, drowning in unbearable grief? It’s in moments of quiet that these thoughts overwhelm me and I feel my throat start to close up.
I dived back into fanfiction until dinner snuck up on me. Me and Mum ate in front of a Lucifer rewatch – for some reason, it was the only show that didn’t make me want to scream. We watched until we were both falling asleep, until the cats were crawling all over us for their pre-bedtime snack (otherwise they do their level best to wake us up at five in the morning). So we fed them and headed for bed.
It’s hard to admit – maybe because I’m twenty five and feel I should be stronger than this – but I haven’t been able to sleep without my Mum with me for weeks now, possibly longer. All of my mental health stuff is worse at night, particularly my anxiety. It just builds and builds until I’m in a panic attack or worse, a full autistic meltdown. Having my Mum with me, feeling her heartbeat and hearing her breathe, makes things just okay enough to fall asleep, although sometimes it takes a sleeping pill too.
If you’ve been keeping a diary or still want to jot down some thoughts about yesterday, I really encourage you to do so and send it to the archive. The page is here, in case you’d like to submit or learn more about this and their other projects.
Category: covid-19 pandemic, death, emotions, mental health, response, writing Tagged: anxiety, asd, autism, autism spectrum, autism spectrum disorder, autistic meltdown, autistic meltdowns, cat, cats, coronavirus, covid-19, day in the life, depression, diary, diary writing, fanfiction, fear, filming, hopeless, hopelessness, journal, journaling, lockdown, lucifer, mass observation, mass observation archive, mass observation day, mass observations day 2020, masters, masters degree, meltdown, meltdowns, mental illness, motivation, music video, music video shoot, pandemic, quarantine, singersongwriter, sleep, writers block
Posted on January 26, 2019
In a recent therapy session, my therapist and I were talking about this latest depressive episode and what I’ve learned from it. Because I’ve learned A LOT. I’m not ‘un-depressed’ yet but coming out of it a bit has given me a new perspective on it, on my depression and how it affects me. Hopefully that perspective will be helpful to me in the future. Because depression can creep in very slowly, you don’t always notice the signs but in hindsight, there are a handful of things that should be red flags in my mind. Maybe being aware of these things can help me prevent the depression getting as bad as it did this time.
There are symptoms common in everyone – like low mood, fatigue, low self-esteem, and so on – but these are my personal warning signs. Do you know what yours are? Are they similar or different?
Category: about me, emotions, life lessons, mental health, music, suicide, writing Tagged: anxiety, creative block, creativity, depressed, depression, hopeless, hopelessness, mental health blog, mental health blogger, mental health blogging, mental illness, songwriting, suicidal thoughts, suicidal urges, suicide mention, treating depression, warning signs, warning signs of 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.