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!

Anxiety Around Social Media

Social media is a big part of all of our lives. For me personally, it’s a massive part of my job, of being an independent artist, of getting my music out into the world. It’s a big part of sharing these blog posts with people. And it’s a big part of keeping up with the lives of my family and friends. There’s some really good stuff there. But I also find it really hard; it causes me a lot of anxiety and when I’m in a fragile state of mind, it can contribute to my depression. And since this is the place where I talk about those things, I thought I’d write something about social media and some of the reasons I struggle with it. Maybe you guys will relate.


  • Seeing something upsetting – My anxiety, my depression, all of my emotions (which are powerful on a normal day)… they’re all very easily triggered and social media seems to be very good at that. One post, even if it’s not directed at me, can really upset me: scary political or society or world stuff that I can’t do anything about, harsh statements, unnecessary criticism of public figures I feel invested in (especially if it’s inaccurate, which it often is), and so on and so on. It’s so hard to climb out of the misery that one stupid post can cause that sometimes it feels safer just to avoid social media altogether.
  • Seeing something good happen for someone who hurt you – Chances are that, even if you’re not connected with the person who hurt you, people you are connected with are and so you’ll probably still find out about what’s happening in their lives. And honestly, sometimes I’ve found it easier to remain following them on social media so at least these moments don’t come out of nowhere and pull the carpet out from under you. Even if you think you’re over it, even if you are over it, seeing something good happen to someone who treated you badly when you’re in a fragile place can be really hard to manage emotionally, turning a good day or week into a bad one.
  • Seeing your ‘competition’ doing better than you – Even if you aren’t a competitive person, if you work in an industry that is, by it’s very nature, competitive, seeing someone do better than you (have success at something similar to a project of yours, get funding that you were hoping to get, etc) can trigger insecurity, even if you were in a really good, solid place before you saw it. Personally, I can only speak to the music industry. I want my friends and my peers to do well because I know how talented they are and how hard they work but, of course, I also want to do well. So while I’ll always feel pleased that they’re doing well, I can find it difficult as well, especially if I’m stuck in a rut, in a bad mental place, or having any other number of difficulties. It’s a complicated one. In fact, I think they all are.
  • The posts of others making you feel limited – There are various ways you could interpret this point but for me, as a disabled person with mental health issues, it can be really, really hard to see other people out in the world, doing the things that you want to do but can’t because you’re limited by whatever symptoms you live with. I struggle with this a lot and I think part of it comes from being diagnosed so late: I spent twenty years believing that I should be reaching (and exceeding, if I’m honest, because I’ve always been a perfectionist) the same standards as everyone around me. It started to become apparent that I couldn’t and since then we’ve been assembling the puzzle as to why but that hasn’t completely changed things in my head. I know and I understand why I can’t necessarily do the same things as my peers but I’m still really hard on myself when I can’t. I know it’s a process but it’s one that seems to be taking an inordinate amount of time, regardless of how I try to realign everything.

I’m pretty good at curating a mentally and emotionally safe social media bubble. It still allows healthy debate and differing views, of course, but I’m just really careful about where those views are coming from, i.e. not people who continuously rant and rage but people who share carefully considered thoughts and discuss them with equally considerate people. It’s obviously not that straightforward – it never is with social media – but it is possible to block out a lot of the negativity, the people who are being negative just to be negative. But even then, there are always posts that pop up out of nowhere and knock your feet out from under you.

It was a strange experience, researching for this blog post. While I’m usually writing about my own experiences on this blog (in this case with social media), I often read other blogs and articles to get a broader perspective, get more context, and making sure I’m not missing anything that would be important to include. During my reading for this post, something that came up a lot was the issue of presenting a persona online that isn’t quite the same as your own and to me, that was a surprise. I’ve honestly never felt the pressure to present as anything other than myself – although, I admit, snippets of myself rather than the whole experience (no one needs to know about this boring day or that book I never finished reading). I’ve always seen social media as a reflection of myself, the good and the bad. Maybe that’s an Autism thing – linked in with the commonly occurring need for and sense of honesty. So I can’t really speak to that; I’ll leave that to someone who has more experience with it (I wanted to add a link but I haven’t found one that I think is actually helpful beyond explaining the problem – I’ll add one as soon as I find one that offers something more helpful).

I don’t know what the answers are. But just because we don’t know what the solutions are, it doesn’t mean we stop talking about the problems. That is, afterall, how we eventually come up with the solutions. I need to use social media in order to work and I’m aware that I do get some real good out of it but the downsides can be really hard to handle. So, yeah, I don’t really know what to do. But writing out my thoughts has always helped me and maybe some of you out there will relate to this. Maybe you’ll have some thoughts about it; maybe you’ll just feel a little less alone. I hope so.

The Third Semester of My Masters

So that’s it. The third semester of my Masters is officially completed. As I write this, I have just submitted my assessment work and have a week before the next semester starts (online, due to the current number of COVID cases). I have some reading to do for the next module but before I dive into that, I just want to reflect on the last semester, the ups and downs, and all that I’ve learned.


It began with a great deal of stress, and long before the semester was due to start. At the beginning of the pandemic, I’d said I absolutely didn’t want to do my course online and would defer if that was going to be the case. But as the new semester drew closer, I got more and more anxious. I didn’t want to defer but I also didn’t feel safe commuting to and then through London for two hours of classes a week so, after many hours of talking with my family (and many tears), I decided that the best option was to attend as an online student. It was a sad decision to make because I’ve always loved the group dynamic of my university classes but it just didn’t feel safe or responsible to attend in the way I’d have to.

And then, in the week or so before classes started, there was a great deal of stress around getting the right timetable as an online student: conflicting information, the classes not showing up on my online timetable, and so on. When things were already so stressful (the anxiety about the pandemic aside, I was really nervous about whether or not I was mentally up to doing the module with my mental health so fragile), this just triggered a series of really terrible meltdowns. It was a horrible and exhausting way to start the semester, especially the one I’d always been most anxious about: Musical Language in Songwriting. Music theory has never been a strong area of mine so the idea of experimenting with these concepts was very daunting.

While this was very distressing, I don’t want to point fingers or place blame. These are hugely difficult times and no university – no institution – is perfect, even when the world is running according to what we consider to be normal. So it’s not fair to expect everything to run smoothly. And now that I’m on the other side of the semester, I can only sing the praises of my tutors: over and over, I’ve seen just how dedicated, hardworking, passionate, and supportive they are. There have been bumps in the road, of course, but even with the sheer amount of stress they’re under – and that’s just the stress I’m aware of as a student – I’ve been consistently met with warmth, thoughtfulness, and understanding. And I’m just so beyond grateful for that. I couldn’t have completed this semester without their support.

I wrote about my first week back (here) but to summarise, it was a challenge. My uni were using a blended model of teaching so the lecture was online and the workshop was onsite (but as an online student, I was looped in through the online learning platform). The lectures were straightforward since we were all online, and productive once we got into a rhythm and stopped accidentally interrupting each other. The workshop, however, was more complicated: between not physically being there and only being able to communicate through the tutor’s laptop, plus not being able to see or really hear my course mates, it was very difficult. But I spoke to my tutor after the class and the next workshop was better.

I’d thought we were making progress but then suddenly, between week two and week three, I was moved to a new workshop group, an online group made up of just the online students. That really threw me; the constant uncertainty was doing a real number on my mental health. I was really struggling during this time: my anxiety over the pandemic, the expectations of the course, and being able to do well in the module was incredibly high; I was hugely frustrated with the whole situation; I was feeling overwhelmed by my depression, my low energy levels and side effects of medication… I was constantly in tears, constantly having meltdowns.

But slowly, as things started to settle, my mental state started to settle too. I had a really positive meeting with one of my tutors where he went through the learning outcomes and grading criteria and generally what makes a good assessment portfolio. I’ve found that having a meeting like this early on in the semester both helps me to work on the assignments more effectively and avoids unnecessary anxiety. As I said, I felt really supported throughout this module and I’m so grateful for that, both in terms of the module itself and in terms of the broader picture.

The assignments were challenging and definitely interesting, including a reimagination of a cover, a reimagination of an original song, and a brief that still makes me shudder: a song in an uncommon mode, using both 5/4 and 7/4 time signatures, with extended chords and an example of chromaticism (I struggled particularly with this one). We also had to consider the arrangement of each songs and to an extent, the production. The briefs definitely stretched me and prompted some very interesting songs, many of which I absolutely wouldn’t have written if I’d not done the module. I don’t know if I’ll ever do anything with them but I definitely learned a lot from writing them. Having said that, I did spend a lot of time feeling very unsure of myself and the quality of my work, both in terms of whether they were actually good songs and whether they were fulfilling the grading criteria.

About halfway through the semester, my course mates from the year before (those who’d done the Masters full time and completed it in one year rather than two) graduated and I joined them for the online ceremony to celebrate them and their achievements. We were all disappointed not to be able to get together to celebrate properly but hopefully that plan is simply postponed rather than cancelled. They all deserve it and it would be so  lovely to see them again.

Six (out of twelve) weeks in, I was exhausted all the time. I was also still struggling with the nerve pain in my hand – the pain that I’ve been experiencing since the middle of the first lockdown – which was only getting worse, making it even more difficult to play instruments. I was still waiting for my rheumatology referral – that didn’t come through until the last week of the semester and even now, they still don’t know what the problem is.

The latter half of the semester was much more focussed on the assessment, at least it was for me. I worked on the songs I’d already written during the module before taking them into class again for more feedback so that I could get them as good as possible for submission (although I did impulsively write a rap that ended up being part of my portfolio). I also worked on the other part of the assessment: a short essay, analysing one of the songs I’d written and how I’d employed different aspects of musical language. I worked as hard as I could, determined to have at least most of the work done by Christmas so that I could have a break of some kind before the next semester started, unlike last year when I had to work straight through the Christmas break.

Despite the meeting early in the semester, I found it very difficult to judge whether I was doing ‘well enough.’ The learning outcomes and grading criteria felt incredibly vague and therefore not at all Autism-friendly, causing me a lot of anxiety. I mean, it’s Masters level and they have to cover all of the different styles of songwriting on the course so I do understand it but as an autistic person, it’s been one of the hardest parts of the course (uncertainty being a common area of difficulty for autistic individuals). I had multiple conversations with my tutors about it and although they noted it, it’s not like they could change them in the middle of the semester. I guess we’ll see if anything changes over time. I did get useful feedback on my songs and essay during those conversations but I still have no idea what to expect grade-wise.

By the end of the semester, I was almost done: I was making final edits to the songs and trying to cut down the word count of my essay. But the last week was hectic to say the least. I had a really lovely last day of classes – both groups I was a part of were so positive and fun to be a part of – and then a final one-on-one session with my tutor for any last feedback before the deadline (the first day after the Christmas break). That was really useful, especially as I was so close to finishing everything. I also had a meeting with my tutor for the next semester, so that I could prepare for it or, at the very least, get my head around what the expectations of the module were. Again, another attempt at reducing unnecessary anxiety, plus it was really nice to see him again; he’s taught me on and off since my first day on the BA (he actually auditioned me for the BA!) and he’s such a great teacher. I feel like he gets me and my approach to songwriting and I’m really excited to have him as a tutor again. And the semester itself ended for me with a meeting on behalf of ICMP where a group of us (students from different courses) spoke about our experience with the university. That felt good; I only ever want to leave things better than I found them and that meeting felt like an opportunity to do that. It’s re-inspired me to keep trying, even if I didn’t really need to be re-inspired.

I had one last session with Richard, sorted out a couple of technical issues with the tracks, and then I spent every day working non-stop. On Christmas Eve, I managed to finish everything. I was done – or had done as much as I could do without endlessly obsessing over every tiny detail – and could have an actual break between semesters. I really needed that and I had a good Christmas, despite everything going on. I wish I could’ve been with more of my family but we all recognised how risky that was. So we had a truly bizarre and hilarious Christmas Quiz and Zoom call and then dinner within our bubbles; it wasn’t perfect but I think we truly made the most of it and I really enjoyed it, even if there were difficult moments.

After a pretty restful break, I logged onto the student gateway to upload all of my work on New Year’s Day, several days before the deadline. But, for some unknown reason, the pages weren’t set up in a way that allowed us to upload the work required for the assessment. I had multiple meltdowns over it and after a handful of emails to various tutors, I was given an alternate way to submit. I shouldn’t really be surprised: this has happened multiple times and with the deadlines always on the first day back, there’s usually no one to contact for help. I was lucky to have had a tutor respond. Fortunately, it did get fixed on the morning of the deadline and we were all able (and asked) to submit. They usually fix it in time but it’s very stressful every time.


As I’ve already said, I’d been dreading this module but I ended up enjoying it a lot than I’d expected. It was still stressful but the tutors were incredibly supportive and my course mates were engaged and encouraging. It felt safe to bring in whatever I’d written, even if I really wasn’t sure about it (the rap, for example). It is hard being part time though, just as much this year as it was last year: for me at least, I’ve always felt ‘other’ to a certain degree, excluded (unintentionally) from the main group, the full-timers. Rather than being part of two years worth of Masters students, I’ve just felt not quite a part of either. It’s hard to explain but I’ve just never felt truly part of the course, like I’m always missing out on something because I’m only there (or ‘there’) half of the time. Does that make sense? I’m not even sure. Being part time has definitely been better for my mental health but it has made things more complex socially.

But ultimately, the module has been a good experience (although I’m sure my perspective on it will be affected to a certain degree by the grade I get). I think the biggest thing I’ve learned, or the skill that has developed the most, is how my decisions serve the song I’m writing; it’s made me much more conscious of my choices and it made me realise how much I already knew about the techniques we were using but just using them instinctively rather than deliberately. So that was surprising but it has opened up doors in my songwriting.

It was also exciting to start looking ahead to the next two modules: we had extracurricular sessions where students from last year presented their final projects to give us an idea of what that last module would be like. It was reassuring because it made the whole thing feel much more clear and less like a huge, intangible, overwhelming pile of work. Now it feels like an exciting challenge and I can’t wait to get started, regardless of the stress and anxiety involved.

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