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!

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.