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 January 16, 2021
There’s something about new year that always makes me feel hopeful.
I think that many of us move through life as if it’s a story but in reality, there aren’t many clear endings and beginnings and so we often have to create them for ourselves. They help us make sense of things; there’s something helpful and healing about being able to put a difficult chapter behind you and start fresh. 2020 was a lot so I think it’s been good for a lot of us to create some mental distance from all that happened even though 2021 has already had some previously unimaginable moments.
As the events in Washinton D.C. have shown, we have no way of knowing, of course, whether things will be better, of knowing what is to come, but I still have to have hope for the next twelve months, for the future. I think that’s probably one of the most powerful tools we have in general, but also specifically in this period of time: the ability to have hope, even when what we’re facing feels so big and so insurmountable. If nothing else, there is always hope, something that these quotes remind me of.
“Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come.” – Anne Lamott
“Hope is a choice of courage.” – Terri Guillemets
“The future is always beginning now.” – Mark Strand
“You can’t wring your hands and roll up your sleeves at the same time.” – Pat Schroeder
“People are made of flesh and blood and a miracle fibre called courage.” – Mignon McLaughlin
“But all I could think of was how when nothing made sense and hadn’t for ages, you just have to grab onto anything you feel sure of.” – Sarah Dessen
“Hope never abandons you, you abandon it.” – George Weinberg
“Tomorrow is fresh, with no mistakes in it.” – L.M. Montgomery
“Keep a little fire burning; however small, however hidden.” – Cormac McCarthy
“While the heart beats, hope lingers.” – Alison Croggon
“We have always held to the hope, the belief, the conviction that there is a better life, a better world, beyond the horizon.” – Franklin D. Roosevelt
“Hope rises like a phoenix from the ashes of shattered dreams.” – S.A. Sachs
“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.” – Albert Einstein
“The present is the laboratory of the future.” – James Lendall Basford
“When you’re at the end of your rope, tie a knot and hold on.” – Theodore Roosevelt
“They say a person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for.” – Tom Bodett
“Where there is no hope, it is incumbent on us to invent it.” – Albert Camus
“The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you. If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope.” – Barack Obama
“We need hope, or else we cannot endure.” – Sarah J. Maas
“There is a crack in everything. That’s how the light gets in.” – Leonard Cohen
“The birds of hope are everywhere – listen to them sing.” – Terri Guillemets
“And in today already walks tomorrow.” – Samuel Taylor Coleridge
“May your choices reflect your hopes, not your fears.” – Nelson Mandela
“Hope was tricky like water. Somehow it always found a way in.” – Leigh Bardugo
“Hope is a force of nature. Don’t let anyone tell you different.” – Jim Butcher
“There is hope, even when your brain tells you there isn’t.” – John Green
“Sometimes good things fall apart, so better things can fall together.” – Marylin Monroe
“Let your hopes, not your hurts, shape your future.” – Robert H. Schuller
“Hope is the silver lining of dreams.” – Terri Guillemets
“Once you choose hope, anything’s possible.” – Christopher Reeve
I hope that reading these has given you some hope, just like they’ve given me. As I said, none of us can say for sure whether this year will be better than the last but we have to have hope. And we have reason to hope: Trump is leaving and Biden will be inaugurated; the COVID-19 vaccine is being administered around the world; people have come together, both in the wider sense and in the smaller, more local sense, something that will hopefully continue; the new year is an opportunity for a fresh start… And those are the most obvious things. 2020 was a year unlike any other most of us have experienced and I have to hope that 2021 will be better. I don’t think I – we – have any other choice.
Posted on November 23, 2020
For a long time, I avoided all things superhero because they reminded me of my Dad who died suddenly in 2008, when I was thirteen years old. He loved superheroes and passed that love on to me: we’d spend Saturdays watching Justice League and Teen Titans, drawing the characters and designing our own heroes and villains. It was something really special that we shared but when he died, they just became a painful reminder of what I’d lost. So I avoided anything related to superheroes for a long time.
But then, at some point in 2015, I stumbled upon Agents of SHIELD and instead of the hollow ache that I’d come to associate with anything superhero related, something just pulled me in. I loved the characters, I loved the relationships, I loved the stories and the different aspects of sci-fi and drama and action that they explored. I also loved how they didn’t take themselves too seriously, but how they also let the heavier moments rest and breathe. I can’t really explain it but for the first time I felt comforted by the superhero world, rather than saddened by it.
I instantly loved Daisy Johnson. Now, I could write a thesis on her (I’ll try not to, I promise). She’s smart and funny and tough; she also feels her emotions deeply and is incredibly driven, often by those deep emotions and her sense of what’s right and wrong. Over the seasons, we see her go from a foster kid turned hacktivist, trying to find information on her parents to a loyal, dedicated agent and superpowered hero. Of course, she grows up and goes through a lot in that time: she’s betrayed by people she trusts; she develops powers that allow her to manipulate vibrations, to the extent that she causes earthquakes while unable to control her abilities (or emotions); she discovers that she’s a descendant of an ancient race that call themselves Inhumans and finally meets her biological parents, only to be caught in a war between the Inhumans and SHIELD; she guides new Inhumans as more and more gain their abilities (a result of the war); she becomes a leader; she loses more loved ones than anyone should; she isolates herself after she’s brainwashed, unable to forgive herself for the harm she causes; she struggles with trust and guilt and how dangerous her powers make her; she finds herself in a virtual reality, in a dystopian future, far out in distant space, in an alternate timeline… But through all of that, she finds family in her team and a place to belong in SHIELD, two things she’s spent her whole life searching for.
She’s not perfect, of course – she makes her fair share of mistakes and bad decisions. Sometimes she hurts the people she loves. But while every blunder becomes a part of her, she doesn’t allow them to define her. She’s defined by the future, by what she does next. She inspires me to be the same. And above all else, her motivation is to help people and that’s something that’s never changed; it’s something that’s at the very core of her and I find that really inspiring too.
The show ended a few months ago and if I’m honest, I’m still trying to get my head around that. How can my favourite show be over? But if it had to end, they couldn’t have done a better job. The last two episodes of the season are some of the best they’ve ever done (although I’m not sure anything could surpass the legendary time-loop episode) and the final scenes are as heart-warming as they are heart breaking.
*Major spoiler alert* The season (and the show) end with the team meeting (bizarrely enough, through an ultra sci-fi version of Zoom) for the first time in a year. They catch up for a few minutes before leaving one by one, giving us the opportunity to see what adventures they’re in the midst of now. Eventually the only two left are Daisy and Phil Coulson (“It was so special to have that moment with Clark [Gregg].” Chloe Bennet says), without whom the show would never have existed. It’s kind of funny: the show would never have existed without Coulson and neither would Daisy, had he not pulled her out of her van and onto the SHIELD plane. From that moment on, there’s something really special about their relationship. Every relationship in the team is unique and special but there’s just something about Coulson and Daisy’s relationship that has always felt bigger than words. There’s definitely elements of student-teacher, best friends, partners in crime, and father-daughter (the last comes up throughout the show), but again, it seems to transcend all of those. The actors seem to agree, and both have spoken about how similar that relationship is to their relationship in real life.
“It’s such a dynamic friendship in a way that you don’t really see that often in life, let alone on TV. He is a coworker, and people say father figure, but he’s so much more than that. He’s a friend, a mentor, he’s hilarious. I just feel so special to have such a unique, dynamic relationship with this person. And obviously that shows up on camera and it’s nice. It’s really special.” (x)
“From the first interrogation scene with Skye, after we pulled her out of her van, there was just something different about Chloe Bennet. And the way she has a realness and a fire to her as a performer. There are a lot of great actors to work with on that show but the through line of that relationship, that friendship, that family-type relationship… people say father/daughter, and it definitely has that in it, but I think, like my relationship with Chloe, it has so many permutations and it isn’t that simple. Where she’s helping and teaching and rescuing me as much as I’m doing that for her. For me, it was that part of the show where I grew the most as an actor and as a human,” says Clark Gregg. (x)
This relationship has always been one of my favourites on the show and one that’s felt very close to my heart. Maybe that’s due to the loss of my own father and watching a character I love and relate to find that relationship, I don’t know. But I’m grateful that we got one last moment between the two of them. The atmosphere is warm and supportive, and they exchange a few meaningful words before parting. Daisy tells Coulson that he’s still needed out in the world, finding new recruits for SHIELD, commenting on one final thing that has come full circle in this final episode: Coulson was the first person to believe in her, which ultimately led to who she is today and now she is following in his footsteps, the first to believe in her sister (discovered in the alternate timeline) and guiding her on the road to becoming a SHIELD agent. It’s a very emotional moment, even as the actors carry it off effortlessly.
Coulson leaves and Daisy takes a moment to look around at all of the empty chairs. But it’s not the end. She evidently has ongoing secret communications with Simmons and they’ve promised to meet up as a team at the same time and place every year (although, in my head, they meet in various combinations between those full team gatherings). Then she removes her communications device and we discover that she’s on a spaceship – the commander of said spaceship – with Daniel Sousa (her new, taking-it-slow-but-utterly-head-over-heels-for boyfriend) and her sister, Kora. And the last we see of her is the three of them staring out at a stunning nebula.
(Apparently the nebula was never officially named but Jed Whedon, writer of the episode, left it as: “The three look out at the Nebula, an otherworldly multicolored cloud of space dust. A new family.” (x) That made me super emotional: the show began with Daisy searching for her family, finding a completely unexpected family in SHIELD, and the show ends with her building a family, or an extension of her existing family. So that quote felt very special.)
In these final scenes, there’s something different about Daisy. Yes, she’s still Daisy – there’s always been something incredibly consistent about her as a character, right from the beginning – but there’s also something we haven’t really seen before. There’s a sense of calm, a sense of peace. She knows who she is, she has complete faith in herself and her abilities, and she’s surrounded (physically and emotionally) by people who love her and support her. As Chloe Bennet says, “There’s a lot more groundedness within her.” She’s grown into someone her season one self could never have imagined and it’s incredible. I found it more inspiring than I can put into words, considering how much of myself I see in her as a character. Her ‘ending’ gives me hope.
I got caught up with season seven a few days before the finale. It was clear the finale was going to be incredible and I just felt that I wanted to do something to commemorate how much the show and how much Daisy meant to me, how much of an effect they’ve had on my life. I thought about it and decided that I wanted to get a daisy tattoo: to remind me how much this show and this character have meant to me and helped me through hard times; to remind me of Daisy and all of the things about her that inspire me, like her determination, her strength, her resolve to help people, and so on; to honour the love of superheroes I share with my Dad and that connection we will always have.
At some point between that moment and the finale, Chloe Bennet posted on Instagram, asking for suggestions as to what she should do with all the stuff she’s collected from her time on the show. I replied with some ideas but I also thanked her for all the show and Daisy have done for me, as well as my plan to get a daisy tattoo. And then – on the day of the finale, a plan she’d apparently had for a while – she posted a couple of photos on Instagram… of herself getting a daisy tattoo.
I couldn’t believe my eyes. It put the biggest grin on my face. I loved the idea that we’d both had the same thought process over commemorating Daisy, although obviously Chloe Bennet’s relationship to Daisy is on an entirely different level to mine. In one interview, she said: “I definitely would [play her again]. I mean, I have such a soft spot for her. I started shooting the show when I was 20, and then I finished when I was 27. To get this time right now, in isolation, to kind of contemplate the past seven years and how much it’s meant to me – it hasn’t really hit me yet that the show is over, so it doesn’t really feel like I’m done playing her yet.” And in another, she said something similar: “I don’t feel like I’m done playing her. I feel like there’s room in the Marvel Universe for more Quake. So hopefully you’ll see that happen!”
When this fan-made trailer appeared, at least half the internet fell for it, believing that a Daisy centric show was in the works. You’ll see why when you watch it.
It’s stunning, a perfect summation of Daisy’s story so far and an exciting look at how her story could continue. As much as I’d love a show about Daisy, or really just any extra Daisy content, the idea does make me a little nervous. She’s been so beautifully developed as a character that I’m not sure I’d trust her with anyone but Jed Whedon and Maurissa Tancharoen (the main showrunners of the series from the start). But knowing how much Chloe loves Daisy, I doubt there’s any reason to worry; Daisy couldn’t be in safer hands. I love Chloe Bennet and find her hugely inspiring too but I think I’ll save that for another post, otherwise we could be here forever…
And as I said, I probably wouldn’t have had any of this without Dad. And while the loss of him – that scar, that hole – will always be there, having this thing that he loved so much – this love that he passed on to me – back in my life has been a healing experience. The characters, the stories, and the lessons they teach us are his legacy to me and I’m grateful for whatever it was about Agents of Shield that made me feel able to engage with these worlds again.
Today would’ve been his birthday and while I have no way of knowing what life with him in it would have looked like, I like to imagine that we would’ve spent the day together: swimming in the morning (another thing we often did together) and then spending the afternoon and evening curled up on the sofa, taking turns choosing episodes of our favourite superhero shows. And I have no doubt that a great deal of them would’ve been from Agents of Shield.
Category: about me, death, emotions, favourites, video Tagged: agents of shield, agents of shield finale, agents of shield season 7, alternate timeline, bereavement, birthday, canon, chloe bennet, clark gregg, coulsonlives, dad, daisy johnson, daisy tattoo, death, family, fan made, fan made trailer, fantasy, father, favourite, favourite tv show, finale, finale episode, friendship, grief, guilt, headcanon, hope, inhuman, inhumans, inspiration, inspired, inspiring, instagram, jed whedon, legacy, loss, marvel, marvel universe, maurissa tancharoen, memories, phil coulson, powers, quake, quote, relationship, skye, space, superhero, superheroes, superpower, superpowers, tattoo, timeline, trailer, trust, tv show, video
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…