What I Did In Lockdown – Part 3

So, on the 4th January, England went into another national lockdown and this list was once again revived. This one felt much more like the first lockdown than the second, where many schools, businesses, etc were still open. When schools and universities started to open, my course remained online (it was one of the courses that could function solely online and meant less people going back to the uni) so lockdown continued for me. My life has only just started to involve going out again – swimming, getting a haircut, (safely) seeing a few people – and that’s why I’ve kept this list going as long as I have…


  • Uploaded all of my assessment work for the Musical Language module.
  • Suggested a topic for Kalie Shorr’s podcast, which she used, and then mentioned me and my music during it, which meant a lot to me.
  • Followed the news about the riots at the Capitol building in Washington D.C.
  • Started building my family tree on AncestryDNA and learning about who my relatives are, especially on my father’s side. This included messaging with distant relatives (cousins multiple times removed, for example), which was a pretty surreal experience.
  • Listened to and fell in love with the bonus tracks from Taylor Swift’s evermore.
  • Started a new (very beautiful) subscription of Vitamin D supplement.
  • Had a socially distanced chat and exchange of Christmas presents with one of my best friends.
  • Had a bit of a reset therapy session: we caught up and then set some goals to work on.
  • Had multiple writing sessions with Richard.
  • Wrote and posted a blog post about the third semester of my Masters.
  • Tested out a new method of overcoming my Trichotillomania: using a strip of elastic to tie my hand to my portable desk, preventing my pulling hand from reaching my hair.
  • Finished my ADHD assessment and was diagnosed with ADHD, although it’s a complicated one as there is much overlap between Autism and ADHD.
  • Had a Netflix party with some friends where we watched How To Train Your Dragon.
  • Started my new university module, The Writer’s Voice (online, of course).
  • Binge-watched The Wilds.
  • Had a productive meeting with one of the careers team at my university.
  • Had multiple writing sessions with my friend and coursemate, Luce.
  • Watched and critiqued the first draft of the acoustic session videos.
  • Watched the film, How It Ends.
  • Watched the film, Ava.
  • Due to technical issues, my friend, Aislin, and I wrote a song using basically texts and a google doc; and not only that, it was a song we loved and felt really proud of, regardless of the circumstances.
  • Watched Joe Biden’s inauguration; I found it very inspiring and emotional.
  • Had a consultation with an Occupational Therapist (via phone) for the pain in my hands.
  • Continued with my therapy sessions.
  • Worked on a couple of songs with my friend and coursemate, Dan.
  • Got my AncestryDNA results back, which was really interesting in some ways and frustrating in others.
  • Had a long catch up call with one of my best friends.
  • Had my first session for a new mentoring programme.
  • Had a meltdown after an unexpected change with a university class and ended up missing the class entirely.
  • Watched the series, Tiny Pretty Things.
  • Had a COVID test.
  • Had my COVID test come back negative.
  • Had multiple sessions with my friend and coursemate, Anna.
  • Watched one of my best friends, Luce, do her second online show.
  • Finished the acoustic session videos.
  • Began Occupational Therapy for the pain in my hands.
  • Wrote a blog post about the first year without our dog, Lucky.
  • Wrote multiple songs by myself.
  • Started FAWM – February Album Writing Month, a challenge to write fourteen songs in twenty eight days.
  • Had a phone call with the Chronic Fatigue Service that proved to be not only unhelpful, but deeply troubling: we discovered that I’d never received the results of blood-work from two years ago that showed multiple (potentially dangerous) abnormalities that should’ve been investigated and he told me my case was too complicated for them, that they didn’t feel they could help me.
  • Ran into a friend that I haven’t seen for ages and we planned a call and (online) movie night.
  • Had an ECG: hypermobility can result in heart problems (in a small percentage of people) so I’ll have to have regular heart check ups.
  • Had a writing session with my friend and coursemate, Amy.
  • Continued to spread awareness of how ableist, offensive, and dangerous Sia’s film, Music, is.
  • Posted my blog post about the first year with our lovely dog, Lucky.
  • Watched the film, Peppermint.
  • Celebrated the beginning of Taylor Swift releasing her rerecorded albums, starting with ‘Love Story (Taylor’s Version).’
  • Wrote with my friend and coursemate, Harrison.
  • Watched the film, The Dig.
  • Had a long overdue movie night (in the middle of the day) and catch up with two of my best friends.
  • Posted two blog posts on the same day about Trichotillomania. (x) (x)
  • My Mum had her first COVID vaccination.
  • Had a difficult video call with one of my tutors about one of the Masters modules, in which I got very upset.
  • Watched Series 1 and 2 of The Bay.
  • My Mum trimmed my fringe for me.
  • Received the about-face makeup (by Halsey) I’d bought and tested it out; I particularly liked the matte lip product.
  • Rewatched Criminal Minds from start to finish.
  • Had several writing sessions with my new friend and coursemate, Phill.
  • Received the Chronic Fatigue Service’s post-session report before they sent it to my GP and corrected all of the errors in it (such as when I was diagnosed with ASD).
  • Watched the film, Taking Lives.
  • Rewatched all three seasons of Absentia.
  • Had another mentoring session, which was really thought-provoking and productive.
  • My university had a reading week so I didn’t have any classes.
  • Had a planning session with Richard after one of our writing sessions.
  • Found the new COVID-19 plan announced on the 22nd February thoroughly unclear and confusing.
  • Watched New Amsterdam Season 1.
  • Wrote several songs based on fictional stories and characters, which isn’t my writing comfort zone but was really fun.
  • Started watching Unforgotten Series 4; I’m ecstatic to have Nicola Walker on my screen again, especially playing such a great character, but given the end of the last series, I can’t help but worry that this will be the last.
  • Had multiple sessions with my friend and coursemate, Simon.
  • Watched the film, Escape From Pretoria.
  • Completed FAWM (February Album Writing Month), actually writing 14 songs in less than 28 days.
  • Had a socially distanced catch up with one of my oldest and best friends.
  • Had a second COVID test.
  • Did several Autism research studies (from home, of course).
  • Dyed my hair.
  • Had a writing session with my friend and coursemate, Joy.
  • One of my best friends, Richard Marc, released his debut single, ‘Put It In A Postcard,’ which I helped write.
  • Had my COVID test come back negative.
  • Learned that my ECG had come back clear.
  • Had official confirmation that I’ve been diagnosed with Hypermobile Ehlers-Danlos Syndrome.
  • Had a meeting with uni staff to discuss the options around the process of changing my antidepressants in order to take medication for my ADHD.
  • Watched New Amsterdam Season 2.
  • Met a potential DSA mentor (it didn’t work out).
  • Was unexpectedly triggered during a seminar and got extremely upset, although I was somehow able to pull myself together enough to manage the class.
  • Bought tickets for me and my family to see Tim Minchin when he (hopefully) tours the UK at the end of the year.
  • Announced the Honest EP (Sunburst Sessions).
  • Fell down the stairs but fortunately wasn’t too badly banged up.
  • Sweep had to go to the vet because she seemed to be having trouble moving around comfortably but the vet wasn’t worried and thought she’d probably been knocked around in all the wind we’ve been having and has given her some painkillers. We also asked if she had any guesses as to what breed Sweep is since we have no idea and her guess is Long Haired Domestic Cat with potentially some Norwegian Forest Cat, so that’s what we’re going with unless we decide to do one of those pet DNA tests.
  • Had a good catch up call with one of my oldest friends.
  • Caught up with The Grammys, celebrated Taylor Swift’s folklore winning Album of the Year, and cried over all of the acceptance speeches.
  • Watched The One (Season 1).
  • Had a particularly good response in class to one of my songs, which is one of my favourite songs I’ve written recently.
  • Had a really productive meeting with my course leader about my Masters final project.
  • Had an upsetting and thoroughly unhelpful appointment with a specialist I’d been referred to.
  • Had another set of blood tests – I’ve completely forgotten what they’re for or who requested them with so many people involved right now but they might give us more insight into my fatigue.
  • Posted the first of the Honest EP acoustic sessions, ‘Bad Night (Sunburst Sessions)’.

  • Learned about Travis Meadows’ surgery, donated to the gofundme, and shared the link.
  • Watched one of my best friends, Luce, do an awesome online show.
  • Posted my blog post about being diagnosed with ADHD.
  • Watched Creating The Queen’s Gambit, which just made me want to watch the show again.
  • Joined the judging panel for a songwriting competition.
  • Screeched at the penultimate episode of Unforgotten Series 4.
  • After a really fascinating seminar on Jungian archetypes, I spent hours reading more about them.
  • Suddenly found out quite a lot about my Dad’s side of the family, which was amazing but pretty overwhelming.
  • Had another meeting with one of the tutors to fine tune the approach to my Masters final project.
  • Did an interview with an Autism publication.
  • Attended Betsy Lane’s Zoom party to celebrate her (awesome) new single, ‘Plan For Paris.’
  • Rewrote my professional bio, or attempted to at least.
  • Had a long phone call with one of my best friends, which I think I really needed (plus she said something to me that may be the most special and important thing anyone has ever said to me).
  • Worked on multiple blog posts for World Autism Awareness Week 2021.
  • Had an excited little freak out about Lexie Grey (played by Chyler Leigh) appearing in Grey’s Anatomy again, even though I’m not watching the show at the moment (I just can’t manage living the pandemic and watching entertainment about it – but I loved Lexie so I look forward to watching it one day).
  • Worked with Richard on my next release.
  • I posted the second video in my acoustic session series, ‘Clarity (Sunburst Sessions).’

  • Had a lovely, long call with one of my best friends.
  • Received a late Christmas gift from one of my parents: a vinyl of the Honest EP!
  • Got a very sweet comment from Natalie Hemby (one of my favourite songwriters) on Instagram.
  • Wrote and submitted a research proposal for a conference.
  • Got my first COVID vaccine!
  • *SPOILER ALERT* Was deeply, deeply upset when Cassie died in the Unforgotten finale – I’m not sure I’ll ever feel the same way about the show and I don’t think I’ll be able to watch the next series.
  • Wrote a song about grief called ‘Incomplete,’ inspired by Unforgotten but informed by my own experience.
  • Had the initial meeting about the next and final module of the Masters, called The Major Repertoire Project.
  • Worked on a really special song with my friend and coursemate, Anna.
  • Went to a drop-in session (online) with my tutor to get some advice on my assessment work.
  • Posted the third video in my acoustic session series, ‘Sounds Like Hope (Sunburst Sessions).’

  • Had several video calls with my friend, Luce, where we worked on our songs for our assessment portfolios.
  • My Mum cut my fringe again. It was alarmingly short this time.
  • Put up a blog post for every day of Autism Awareness Week.
  • Had my last workshop of the semester, which felt quite emotional.
  • The research proposal that I submitted for the conference was accepted!
  • Celebrated Taylor Swift re-releasing her album Fearless as Fearless (Taylor’s Version).
  • Posted the fourth video in my acoustic session series, ‘Back To Life (Sunburst Sessions).’

  • Rewatched The Wilds while I worked on various things.
  • Started watching The Shires’ online concert but couldn’t finish it because of family commitments.
  • Got some really exciting news about a creative project I’ve been involved with (I can’t talk about it yet since it isn’t my project to announce).
  • Got a new fidget toy that also seems to be complimentary to my Occupational Therapy exercises.
  • Finished my marking for the songwriting competition.
  • Rewatched Dare Me while I was working on various tasks.
  • Met and had my first discussion with my Major Repertoire Project (the final module and project of the Masters) supervisor.
  • Posted the fifth and final video in my acoustic session series, ‘Honest (Sunburst Sessions).’

  • Ended up spending the day in A&E after three days with a migraine had my doctor concerned that I might be experiencing side effects from my COVID vaccine.
  • Dyed my hair again.
  • Finished my coursework for The Writer’s Voice module.
  • Worked on a song with my friend and coursemate, Alessandro, which incidentally meant that I’d written with every person in the group.
  • Submitted my coursework for The Writer’s Voice module.
  • Celebrated one of my parents’ birthdays.
  • Attended several (online) networking meetings organised by my university.
  • Rewatched Blood & Water (Series 1).
  • Upped my Occupational Therapy regimen.
  • Got a haircut for the first time in MONTHS. 
  • Had another migraine that lasted for several days.
  • Released the Honest EP (The Sunburst Sessions).
  • Had a very distressing and unhelpful follow up appointment (by phone) with a rheumatologist (different from the original one).
  • Hit a stumbling block in getting treatment for my ADHD.

As I said in the last part of this list, hopefully there won’t be reason to continue this post; hopefully there won’t be any more lockdowns. But I guess only time will tell. I’ve found it strangely comforting to keep this list; it’s kind of like a time capsule for these strange periods of time, if that makes sense.

I hope you’re all keeping safe and well and I’ll see you in the next post.

Parenting A Young Adult With Autism Spectrum Disorder: My Mum Interviews Me

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:

  • Really listen to what your child, teenager, or young adult is saying and I mean really listen and take seriously what they’re saying.
  • Support them in the areas they struggle with as best you can without judgement or criticism. Chances are they don’t understand why they find it so hard either. You can do this by encouraging them to be honest about what they’re feeling, researching the particular issue (noise sensitivity, for example), and speaking to specialists. There are also therapies you can then pursue if you both/all feel it’s necessary or would be helpful.
  • It’s good to have someone to push you to help you work through your struggles, particularly someone who loves you and only wants to see you succeed, but it’s also important as the parent to recognise when the child, teenager, or young adult is reaching their limits and that they need to take a break. Respect those limits and celebrate each victory.
  • Advocate for them when necessary, with no judgement as to why they need you to in that moment.

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!

Parenting a Young Adult With Autism Spectrum Disorder: I Interview My Mum

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!