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!

The End of an Era

I did it. I graduated.

The last three years have been a whirlwind. As I said in my Instagram post on Thursday, “my degree was an endless mix of inspiring, exhausting, frustrating, ridiculous, exciting, stressful, and joyful.” That’s the short version. The long version is very long. I dealt with a lot of grief and disappointment. I struggled with my mental health, discovered I was Autistic, and started to untangle all the threads that come from that. And that’s outside of university. At uni, I wrote hundreds of songs, met some amazing people, got the opportunity to go to Nashville, and ultimately, became a better songwriter. There were classes I loved and classes I hated. It was a constant battle to keep the lid on my anxiety and sometimes I failed. But I wouldn’t change it. My experience is coloured massively by how good my third and last year was. There were moments where I hated it, where it made me incredibly anxious, where I had meltdowns so bad I thought I’d never recover. There were moments I thought I’d never get through, that I couldn’t do what I was being asked to do. But somehow I did. Somehow I’m here, with a first and two graduation ceremonies under my belt.

The first graduation was for UEL, The University of East London. My school, The Institute of Contemporary Musical Performance, is a specialist music college and while it operates independently, it’s officially part of UEL. So we were invited to one of their graduation ceremonies. My Mum and my Granny came to this one. It was very formal – it was caps and gowns. That was something I was looking forward to and something I was very let down by. I’d thought it would be fun but it became a very stressful experience. Maybe it didn’t fit properly, maybe that’s just how it is but my cape kept sliding back and strangling me and my cap kept falling off my head. It took seven bobby pins to keep it on my head. As someone who struggles with sensory stuff, which includes the way clothes feel, that was really hard and really ratcheted up my anxiety. Fortunately, spending time with my friends, messing around and laughing, helped to keep it at a bearable level.

The ceremony itself was a bit strange. Because I only went to UEL once, it kind of felt like I was intruding, like I didn’t belong there. All the talk of the ‘UEL community’ made me feel a bit disconnected from the whole thing but the speakers were very good. I’d like to share something Geoff Thompson, the chair of the governors, said in his speech: “You are strong. Don’t ever, ever forget that you are strong… Never, never, never, never, never, NEVER give up on your dreams. It is not an option. It is not a choice.” You know, that was just what I needed to hear, just as I’m leaving university and heading out into an uncertain world. It was inspiring. It was empowering.

And all of a sudden, we were lining up to walk across the stage to shake the chancellor’s hand. It was weird: I had tunnel vision. No one could have applauded me as I walked across the stage and I wouldn’t have noticed. I was completely focussed on walking towards the chancellor, shaking his hand, and walking down the steps. It’s funny how something that you usually don’t have to think about – like walking – suddenly seems to take a lot of effort. But I did it, I got back to my seat, and I cheered for my friends. We threw our caps and then it was over. Graduation one was done. I’d thought I’d stay for a drink with my coursemates but after all the anxiety, I was completely exhausted. So I (eagerly) returned my gown and headed home.

The second graduation was a couple of days later and much more fun. This was just our school so it felt a lot more personal. Even though I don’t have many friends outside my course, I recognised a lot of faces from the other courses and we’d all shared the same space. We’re all connected by that. We didn’t have to wear gowns but it was still formal. Everybody looked gorgeous; it was really fun to see everyone dressed up. All four of my parents came to this one, which was amazing. I’ve never had all of them at a school thing before so that made me very happy. I was positively giddy.

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I really enjoyed the ceremony. The head of each course made a speech and then presented each of their students with the scroll. My favourite speech came from my programme leader, Jonathan. It was thoughtful and warm and inspiring. He even gave this blog a shout out, along with two other projects my friends have worked on. It was a very special moment. Another special moment was watching one of my best friends receive her scroll while her own song played. That was awesome.

And suddenly, it was my turn and I was walking across the stage, giving Jonathan a hug, and accepting my scroll. We posed for the photo and then I was moving again. I was a bit more aware of what was going on this time. The UEL one was a good rehearsal in that regard. There wasn’t an opportunity to thank my parents so I made the best of what I had. I located them in the crowd and did this:

It was important to me to do that.

Everyone received their scrolls and then we gathered for the reception. It was lovely to celebrate with everyone, to catch up, to introduce my parents to all these people who have played such an important part of my life in the last three years.

And that was graduation. The only other thing to add is that, to celebrate, we headed out for drinks. It was my first experience being in a club and my first experience drinking cocktails, neither of which I would say I enjoyed but it felt very empowering to try those new things and not feel trapped by my anxiety. Major thanks to my friends for looking after me and making it such a positive experience.

I will write more about my experience at university at some point but it’s a pretty big task. I need to go through my diaries and pull together some stuff before I can write an accurate account of that time but I will manage it at some point. It was a crucial time in my life. It’s a big part of who I am.

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