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!

Creative Difference: Exploring Art And Autism

Recently I attended a webinar hosted by the Autism research charity, Autistica, about the relationship between Autism and art and it was really interesting. The panelists were Professor Jonathan Green (Autistica Trustee, Professor of Child/Adolescent Psychiatry at Manchester University, and artist), Sarah Jane Bellwood (artist and gallery owner), Lizzie Huxley-Jones (editor and author of Stim: An Autistic Anthology), and Jane Elizabeth Bennett (multi-disciplinary artist and researcher).

Each person introduced themselves and then the discussion began. I found the whole thing really fascinating so I thought I’d pull a few quotes from the video that I thought were particular highlights, but I thoroughly recommend watching the whole video to hear all of the points made.

So here are some quotes that I found really interesting…

JANE ELIZABETH BENNETT: “I think art is the first language that I really kind of learnt. So, for me, art is a way to speak, it’s a way to communicate, it’s a way to convey emotion, and they’re not always things that I’m fantastic at doing in a kind of neurotypical way. For me, art is a very atypical way of communicating. You do it through colour, you do it through gesture, you do it through sound.

I love this description of art and it’s something I really relate to as an artist. I definitely use my songwriting to tell stories and relay experiences and share emotions. I do that through the lyrics, through the melody, the vocal performance, the arrangement and instrumentation, as well as the production. While, for me, the song is the piece of art in its purest form, the performance, the arrangement, and the production are all a vital part of conveying and enhancing the emotional experience. I definitely experience Synaesthesia to some degree: sounds have colours (and some even have specific tastes) as do emotions and so a big part of my process is trying to bring those experiences together; I’m often only happy with a song when the emotions, sounds, and colours are completely in sync.

JONATHAN GREEN: “And I was totally absorbed in doing this drawing, like nothing else existed except what I was doing. And I came out of it an hour or two later or something and I think I felt, ‘That’s the most real thing that’s happened to me for a long time… is that connection, with that plant through drawing.’ And I think that’s, for me, why I held on to it… was that it felt… it gave me an access to something that was so real… It’s allowed me to feel really real.

Having just written and finished a song is when I feel most real, most alive. Sometimes I feel like I don’t really exist and when I finish a song I’m proud of, it’s like a realisation that I really do exist. It’s the only time I feel in sync with the universe. I never feel so connected to myself as when I finish a song, or to other people as when I perform a song I’ve written and they respond to it. We’re all in this single moment, experiencing this thing together and it’s magical.

LIZZIE HUXLEY-JONES: “We should have the space within an industry to create whatever we want.

JANE ELIZABETH BENNETT: “I think it’s very important that as an autistic artist… it’s very important to have that space to make work that isn’t about Autism. Just because I’m autistic doesn’t mean I have to be, like, the voice of Autism but I think my Autism – just as a personality or as a writing style – is gonna be inherent in the work I make.

LIZZIE HUXLEY-JONES: “The way I describe it is, ‘we experience everything autistically so why wouldn’t everything we create be a little bit autistic as well?‘”

I think these are really important points: just because we’re autistic, it doesn’t mean that we have to create art about being autistic. Many do because it’s an outlet for their individual experiences or because it’s a way to make sense of themselves but we should never be pigeon holed into just creating Autism related work. How much space Autism takes up in our lives is different for everyone and we obviously feel and experience unrelated things that we want to make art about so not all autistic artists will choose to make art about Autism. But as Jane points out, being autistic likely will influence the work we make because it influences the way we perceive the world. Day to day that can be incredibly frustrating but when it comes to art, it can be something that makes our work special and different.

JONATHAN GREEN: “I think, for me, making art or the process of making art does help me make sense of things or sort my mind out in some way. I always feel, kind of, more in harmony after I’ve been making art. Internally, you know? Kind of rebalanced, or something like that.

I can absolutely relate to this. I definitely feel most calm, in mind and body, when I’ve just finished a song. It’s not too far from the experience I described earlier, about feeling real and alive and in sync. I also feel this real sense of inner calm. It’s like everything within me has been shaking and it’s suddenly stopped. It’s like all these disconnected pieces have come together and everything makes sense. It’s not dissimilar to how I imagine getting high feels.

There were a couple of things that bothered me though. I felt like having three visual artists and one writer wasn’t the best representation of artistry; they could’ve had a musician or sound artist, an animator, a photographer, etc and that would’ve created a more varied discussion because the forms of art were more varied. The discussion was really interesting as it was but I think a wider variation of art forms would’ve only added to that.

There was one thing specifically that I really didn’t like and that was the repeated use of the word ‘obsession’ in place of ‘special interest,’ the term more commonly used in Autism. I know that some people don’t like the phrase ‘special interest’ (I must admit I don’t love it) but I don’t think that that’s a good reason to revert to the word ‘obsession,’ a word that has some very negative connotations. Various definitions of ‘obsession’ involve the terms ‘unhealthy’ and even ‘disturbing’ and while I can’t speak for anyone else, I find those associations with my special interests uncomfortable and actually upsetting. I’ve had a handful of special interests in my life and none of them have been unusual in subject (animals, writing, singing, songwriting, to name some), but the intensity of that interest and fascination is what stood out. Definitions of ‘obsession’ also include the idea that they dominate a person’s thoughts, that they have control over you (which links back to the idea that they’re unhealthy), which, again, I personally wouldn’t associate with my special interests. While I think about my special interest – songwriting – a lot and would prefer to spend all of my time doing it, I can think and do other things and I can recognise when I’m spending too much time doing it and neglecting the other areas of my life. And during my research into the difference between ‘obsession’ and ‘special interests,’ I found several articles about how helpful and positive engaging with special interests are for autistic people (here and here). In the former, the writer, Laina Eartharcher, makes many good points that I feel I should quote rather than attempt to paraphrase:

  • “They soothe and calm me.”
  • “My interests do not dominate my thoughts the way that is consistent with an obsession. It’s not like I can’t think about–or talk about–anything else. It’s not like I can’t set my other interests aside and focus on my daily work. It’s not like I can’t get anything else done. If my interests were indeed obsessions, none of that would be true; my life outside of the interest would have come to a full stop.”
  • “For me, it’s all about relaxation and curiosity. I want to learn, focus, explore. And I want to do so in depth, with a sense of completeness. I don’t want pieces of the picture, I want the whole picture. I want to connect dots. I want to reach understanding. I want to feel solid in my knowledge. Tidbits and soundbites just don’t do it for me. They’re pointless and unsatisfying. It’s like, what’s the point of spending time gathering a bunch of soundbites and headlines? Meh. Give me the whole story, or don’t bother me with it.”
  • “I would like to see the ‘obsession’ association fall out of favor. It’s not accurate. It’s not nice. It lacks understanding.”

I relate to all of these statements and fully agree with her. ‘Special interest’ may not be the perfect word but the use of ‘obsession’ can be damaging and create misunderstandings about Autism. So it did really bother me how many times this word came up and the fact that it was never addressed, even briefly. I want to talk about special interests more in the future – I think it definitely deserves its own blog post as a subject – but as it came up here, I felt like it was important to talk about.

But that issue aside, I found the webinar to be a really informative, enjoyable experience and I look forward to similar events that Autistica puts on. I’ve followed several of the speakers on social media and have enjoyed delving deeper into the work they’ve created. As an autistic person, I’m always intrigued by the work of other autistic people and to what degree they experience and interpret the world in the same way I do and then (if they do) how they translate that into art.

Mourning A Public Figure

Last week was the two year anniversary of Claire Wineland’s death. She was a twenty one year old activist, raising awareness around Cystic Fibrosis and founding Claire’s Place Foundation to support children with Cystic Fibrosis and their families. She spoke at many conferences (including TEDx and the International Respiratory Convention and Exhibition) and posted multiple videos on YouTube, talking about her illness but also her life and her thoughts on various subjects.

In 2018, she went into hospital for a double lung transplant. I remember watching the Instagram Live where she announced that she’d received the call as she dashed around her home, gathering everything she needed. It was so exciting and I was so happy for her. She had the surgery and everything seemed to be going well. But then she had a stroke and a week later, according to her advanced directive, was taken off life support. She died on the 2nd September 2018 at the age of twenty one. I wrote several posts about her, including one in remembrance.

I was deeply upset at the news of Claire’s death. When I discovered her YouTube videos in mid-2017, I instantly fell in love with her personality, her eloquence, her thoughtfulness. I really felt a lot of the ideas she expressed and despite the fact that we’d had very different life experiences, it felt like we had something in common, something in the way we thought and felt. And despite only having a few interactions on Twitter, I felt a connection to her – obviously not the same connection as the ones I have with my friends, for example, but a connection nonetheless. She had a big impact on my life and when she died, I felt like I could feel the edges of the space in which she’d previously existed, like there was a hole where she’d been. It was a very distressing feeling.

Two years later and I still feel her loss. She was so full of life. You know how some people just seem bigger than others, have minds somehow more infinite, have something extra special about them? That was always the way Claire felt to me. I’d felt so sure that I’d watch her go on to do even more great things. Her death felt so unfair and it still does. It still hurts. The documentary about her, CLAIRE, came out on the first anniversary of her death and as much as I want to watch it, I haven’t been able to. It’s just felt too hard. One day, I will but I just haven’t felt ready.

Over the last few years, I’ve had several similar experiences. The first, I believe, was Cory Monteith in 2013. I was still watching Glee at the time and he was so young; his death was so sudden. Then there was David Bowie, who has always been incredibly important to my brother, and Alan Rickman, who had been a consistent presence in my life through his role in the Harry Potter films. If you’ve read previous posts of mine, you’ll know how important Harry Potter has been throughout my life. And more recently, there have been the deaths of Cady Groves, a singer I’ve been a fan of for a decade, and Naya Rivera, another Glee alumni.

I struggled with each of these deaths, all of these people having had an impact on my life. But I think the only death that has had as dramatic an effect on me as Claire Wineland’s was that of Christina Grimmie. I’d been following Christina on YouTube for years; I just fell in love with her voice and her piano playing, how unapologetically herself she was. She was about my age and pursuing music so it’s not surprising that I related to her. But with managing both my mental health and university, I’d fallen behind on a lot of people in my social media bubble, Christina included. Then I woke up one day and she was gone; I still remember the moment I found out. I was stuck in a state of paralysed shock for days and I had nightmares that went on for months. Much like with Claire, I felt like there was a hole in the fabric of the universe where Christina had been, should still be. Even now, I still think of her often.

Grieving for a celebrity or public figure can feel like a bit of a minefield, I think. There’s the internal conflict: you didn’t know them personally but the feelings are still very powerful. Plus there are always people ready to tell you that you don’t have the right to mourn someone you never actually knew and because you didn’t know them, whatever you’re feeling can’t be grief. But personally, I don’t agree.

Grief is an incredibly complex emotion. I don’t think anyone truly understands it. Personally, I wouldn’t classify it as a single emotion; I see it more as an umbrella term, a checklist of things you may experience although you won’t necessarily experience all of them. I don’t think there’s a big enough word to describe what we go through when we’re grieving. It’s a natural disaster, an emotional natural disaster. It’s so complicated and having lived through both the losses of people in my life and public figures I cared (and still care) about, it’s my experience that the two are definitely different (having said that, we could have a whole other conversation about how the grief for each person is completely different) but that they’re both real and they’re both profound.

I definitely want to write more posts about grief but I want to keep this one to the grieving of a public figure. As I said, it is, of course, different to losing a person who is physically in your life but if you feel a connection to someone, it is inevitable that their death will be painful. As far as I’m concerned, that connection is the key. Whether they’re an actor, singer, writer, activist… they’re all reaching out, with their stories, their songs, their words. They’re reaching out with the intention of creating a connection with another person, a person who finds meaning in what they have to say. And I think it’s fair to say that – often – the deepest connections are the ones that are built from the most personal places (for example, their presence or their work has gotten you through a difficult time, you relate strongly to something they’ve said or created, etc). So of course we would feel the loss that connection. Of course it would be painful and distressing and maybe even traumatic.

And then there’s the moving forward to consider. There will always be things that remind you of them, such as events they would go to or public appearances they’d make. And in the case of creatives, yes, we will always have their past work but that may be difficult to consume again: the emotions and memories associated with them may be overwhelming; it may be painful because it reminds you that they’re no longer here; if they helped you through difficult times, it may be difficult knowing that they won’t be there to help you through any future hard times; knowing that they’ll never create or release anything new may be distressing, especially when the release of new work was a big occasion in your life.

I think that the only way to truly move through an event like this is to talk about it or, at the very least, express your emotions:

  • Hopefully your loved ones will understand what you’re going through, especially if you’ve mentioned this person before or they’ve seen or heard you consuming their content, whether that’s listening to their music, watching their videos, or reading their works. If you can talk to someone close to you and at least get your emotions out of your body; sometimes I think that keeping the emotions stored inside your body only makes them harder to shift further down the road. (If someone you don’t feel comfortable telling the whole truth asks you why you’re upset, you can always tell them that a friend or someone you know has died – that will explain your mood and they’re unlikely to ask too many questions.)
  • You can express your feelings on social media, if you feel comfortable sharing with an unknown audience. Sometimes that can be too scary but sometimes it can be cathartic to put your thoughts out into the world, not knowing where they’ll go or who they’ll reach.
  • You can write a letter to the person who has died. I’ve always found writing to be a good way of getting my emotions out. If you want to, you could post it online if you keep a blog or something similar, or you could simply keep it for yourself as a reminder of what they meant to you and everything you felt at that particular moment in time. When it comes to such an emotionally charged moment, in the future you may want to remember everything about the experience. You may not, of course, but you can’t know that in the present moment.
  • I’ve always found journaling to be very helpful in coping with and managing the ebb and flow of my emotions. Since it’s just for me, I can feel and say whatever I like without fear of judgement, which I think allows me to move through each emotion with less friction. Putting words to what I’m feeling somehow makes it all easier to process and work through. It doesn’t necessarily mean those feelings go away, but the strength of them does become easier to cope with. And then at some point, they simply become a part of you, a piece in your mosaic.

I’m sure there’s more to say. When it comes to grief, there always is. But I think I’ll leave it there. I hope you leave this post knowing that whoever or whatever you grieve for, your grief is valid and I hope that, if you’re going through any kind of grief, that you’ve found some way to manage it and/or that you have people to support you. I’m not sure if it ever goes away but it does change. Life goes on, even if it feels unbearably unfair. So carry with you the gifts they gave you and try to do some of the good that they would be doing were they still here.