Finding HopeParenting A Young Adult With Autism Spectrum Disorder: My Mum Interviews Me
Posted on April 1, 2021
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!
Autistic Students: Coping With Change – Speaking at A Conference!
Posted on December 6, 2020
A couple of weeks ago, I got to speak on a panel at a conference run by UniversitiesUK about how COVID-19 is affecting the mental health of students in higher education and it was a really cool experience. So, now that the whole process and experience is over, I thought I’d write up what happened and why it felt like such a special experience.
A few months ago now, someone from UniversitiesUK contacted me after reading this blog, specifically the post I wrote about my first week back at university and doing it in the middle of a pandemic. She asked me if I would be interested in being part of the conference and speak on a panel about how to support autistic students in coping with all the changes to their education experience, drawing from both my experience of doing a BA pre-pandemic and doing an MA during the pandemic. I said yes straight away; I was excited by the idea that my experiences as an autistic person could help others, both autistic people and those in universities trying their best to support autistic students. So often – at this point in my life anyway – it feels like my Autism hinders my life, so it always feels like a big deal when it’s the cause of something good or provides me with an opportunity to have a positive impact.
Before the conference, there were a handful of online meetings where, first and foremost, I got to meet the other panelists: Jonathan Vincent (Senior Lecturer at York St John University and Autism Researcher), Eilidh Cage (Lecturer at University of Stirling and Autism Researcher), and Marc Fabri (Senior Lecturer at Leeds Beckett University, Autism Researcher, and Project Lead for IMAGE). They were all really lovely and working with them was a really positive experience for me. It was a bit of a challenge to figure out how we were going to deliver all of the information we felt was important to share without overwhelming the attendees. Between our meetings we collaborated on a powerpoint presentation and then met up again (online obviously) to refine things and make sure we weren’t missing anything.
On the morning of the panel, we met early for a quick technical rehearsal, since we were using a different platform than the one we’d been using for our meetings. All went smoothly but just as we were signing off, we got an email from Marc, letting us know that unfortunately he wouldn’t be able to be there. So there was a bit of a last minute scramble to figure out how best to share his contribution with the attendees, despite it being his field of expertise and not ours. I’m grateful that that didn’t fall to me, having no experience in the area of employability of autistic graduates.
I’ve never really done anything like this (the closest experience is probably being a guest at a conference where I briefly shared a project relevant to the talk that I’d worked on) so I admit I was pretty nervous when all the conference attendees started logging into our breakout room. But despite my anxiety, the whole thing went well, even though we did go over our allotted time. And that was with only the three of us!
It was really interactive so there were polls and questions for the attendees to respond to, plus the chat where they could ask questions, although we did have a Q&A set up for the end of the presentation. We went through the panels, taking turns to speak about what Autism is, the disclosure numbers in Higher Education, research into into how autistic people often struggle with uncertainty and change…
And then it was my turn (although I had spoken a bit during previous slides). My first slide was about my experience of how COVID-19 has affected me as an autistic student and the challenges I’ve been faced with. I’d put together what I felt were the most significant examples:
- Increased uncertainty and anxiety – These are common and sometimes very extreme difficulties for autistic people but they have been seriously exacerbated by both the pandemic and the changes within education, which make it much harder to function at their normal level.
- The stress of adapting to new methods of learning with no adjustment time – This, of course, will create more anxiety, potentially making it more difficult to adjust and engage.
- A new and unfamiliar approach to practical classes when online learning is the only option – Same as above.
- Communication challenges in online classes – Difficulty with eye contact may mean missing out on elements within the class and difficulty reading body language (as we are receiving a fraction of what we usually do when engaging with people) can make it difficult to interact in a learning environment or lead to misjudging situations, creating more anxiety, which will only make an autistic student withdraw more.
- Navigating communication in blended classes – Personally, I had difficulty interacting with the group onsite: the picture and sound quality made it difficult to follow what was happening; the position of the camera meant I couldn’t actually see anyone’s faces, which made it extra hard to communicate when you’re already struggling with communication difficulties, such as knowing when to speak in a discussion; I could only communicate through the chat, which only my tutor could see and she obviously couldn’t spend the lesson checking it just in case I’d said something. It can be a very tricky set up. Eventually all of the online students on my course were moved to one group to avoid those problems getting in the way of an already content heavy course.
- General lack of awareness around Autism and related difficulties heightened during this time – Autistic students are struggling much more than pre-pandemic and need more support, which often isn’t available due to a lack of understanding, while they may have been able to navigate around that pre-pandemic.
All of our strategies that have been built over time no longer apply and there has been no time to develop new ones.
My second slide was about what I’ve found to be helpful or what I would find helpful during this time, considering all of the uncertainty and anxiety. They’re actually all ideas that would be helpful generally but since many autistic students are struggling even more than usual, these things are all the more important.
- A designated point of contact – Consistency is not only important because consistency is helpful in general for autistic people but it also means an autistic student doesn’t have to keep explaining their situation. Having a specific person to reach out to for help or support (whether academic or wellbeing) can help an autistic student to feel safer in what can be a very stressful environment. (Note: it’s definitely more beneficial if the person is generally available and accessible – not just on certain days at certain times.)
- Sharing of information and change of plans with time to adjust – Processing information and change and the emotions those trigger can be time consuming and exhausting and so having advance warning allows you to prepare yourself according to your own strategies and also potentially getting in contact with anyone involved, i.e. tutors for the sake of awareness or support.
- Clearly stated expectations – This reduces anxiety and the potential for miscommunications that can cost autistic students time, energy, and grades.
- Flexibility around assessments – Where possible, the autistic student and those responsible for the assessments need to communicate and determine the student’s areas of difficulty and how to accommodate them, making sure that it really is the student’s ability that is being assessed. For example, my high anxiety results in high levels of fatigue so long exams or presentations are a struggle for me, meaning that I need breaks or the assessment is split into sections. This does, of course, depend on the type of examination.
- Regular contact with tutors – Having a good relationship with teachers or lecturers both reduces general anxiety but also means that an autistic student will feel safe to ask for help if they need it and having semi-regular check-ins pre-empts any potential problems.
- Understanding from staff – Having staff be open and willing to support you, even if neither of you know quite what that might look like, is a very powerful and reassuring thing.
(This wasn’t all on the slide, by the way. The headers were on the slide and the rest were my notes for expanding on those headers in order to provide as much clarity and insight as I could.)
I shared this slide with Eilidh and she described what she’d found to be helpful with autistic students, going on to share some of the research she’d done into some of the causes of autistic students dropping out of higher education (obviously done pre-COVID but still very relevant – many of those issues, such as lack of understanding, still exist regardless of the pandemic). But it was really interesting to see how much our experiences of what has been helping overlapped.
The Q&A section was a bit scary, given that I didn’t know what the questions might be and so couldn’t prepare for them. I didn’t want to say something and then realise later that it was bad advice. But it actually went okay. I got a couple of questions but there was one that really stuck out to me. One of the attendees asked me about the situation of many autistic students wanting to remain online – in environments where they were comfortable, without the anxiety of potentially confusing social interactions, not have to deal with the exhaustion that days at university can cause, and so on – even once it’s safe to return to university as normal. She wanted to know, from my experience, whether that’s a good idea. I can certainly understand that. But in the long run, personally, I don’t think it’s a good approach. Every autistic student is different, of course, and will have different needs but I think that the experience of university is a really important one. It definitely was for me. So I think it comes down to supporting these students through the process of either joining or rejoining university. Depending on the student, this could involve visits when there are as few people around as possible, one-to-one meetings with lecturers or tutors as a first step to going to classes, doing certain classes (perhaps the smaller ones) in person and doing others online in a blended set up, encouraging them to do as much as they feel able to (and depending on the student, pushing just past the point of comfort if that feels possible) but allowing them to leave if they feel it’s too much, and just slowly building up to the full experience, as the specific student feels able to. It reminds me of the Māori word, ‘Takiwātanga,’ which translates into ‘his or her own time and space’ (devised by Keri Opai). So hopefully that was a helpful answer.
It was a really, really great experience. The feedback I’ve had has been really positive and I learned a lot too; the whole experience was really rewarding. I’m so grateful to UniversitiesUK for inviting me to be a part of it. I would love to do more events like this in the future. I felt like I was actually helping people, something that’s always been important to me regardless of my Autism. And on a more personal note, having spent a lot of time feeling helpless (as well as being a person who often needs a lot of help), it was so empowering to turn something that can be so debilitating into something positive and useful.
Again, I want to extend my thanks to UniversitiesUK, Jonathan, Eilidh, and Marc (although he couldn’t be there on the day) for making my first conference such a positive experience.
Finding Hope 