Posted on March 31, 2021
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!
Category: about me, anxiety, autism, diagnosis, medication, mental health, quotes, response, therapy, treatment Tagged: advocate, anxiety, asd, autism, autism awareness, autism diagnosis, autism in girls, autism in women, autism resources, autism spectrum, autism spectrum disorder, autistic, autistic adult, diagnosis, disability, disabled, empathy, fatigue, focus, independence, interview, invisible disability, keri opai, late diagnosis, maori, medication, mental health, mental illness, mother, mum, negatives of autism, neurodiverse, neurodiversity, parenting, parenting autism, positives of autism, selective mutism, therapy, treatment, university
Posted on May 13, 2020
On the 12th of May every year, the Mass Observation Archive asks people to keep a diary for a day in order to capture the everyday lives of people all over the UK. This year, 2020, is the 10th anniversary but we are also living in the midst of a global pandemic, making this year a unique one, to say the least.
I’m a dedicated diary writer and have been for years so this is the ideal project for me. I love the idea of so many people’s experiences in one place, the idea of collecting as many versions of one day as possible and trying to build the fullest picture of it. So I was very excited to take part in this day, even if I’ve recently been floored by one of the most awful periods of depression I’ve ever experienced.
Some important things to know before reading this: I am autistic, struggle with depression, anxiety, OCD, and Borderline Personality Disorder. All of the symptoms get worse under stress. I’m halfway through a Masters Degree in Songwriting. I’m really struggling with the Covid-19 pandemic (particularly when it comes to my anxiety, with the fear that my loved ones will get sick), self isolating with my Mum, separated from my three other parents, my brother and my friends.
I slept badly, waking up at eight with my alarm. I’ve been trying to keep to my pre-lockdown routines and on a normal day, I would’ve gotten up and got to work on something but I had a throbbing headache, probably due to the restless night. So I buried my head under my duvet and tried to hide from the light coming in through my curtains.
Being a part time Masters student means I have an empty semester from yesterday until the end of September and I had all of these plans: practice the songwriting skills I’ve learned this year, establish a recording space at home, and get back to swimming, to name a few. But then the pandemic happened and we went into lockdown and all of my plans went out the window. I’m terrified all the time. Everything feels pointless. I can’t focus on anything. And my creativity – my ability to write songs – feels completely blocked. I’m stuck in this frozen state and I just feel like I can’t breathe. I feel like screaming and crying and hyperventilating but I feel like if I start, I’ll never stop. But even distracting myself is hard. I just can’t make myself care about a TV show or whatever. It all feels too big, like there isn’t enough space in my brain for anything other than this howling fear. And this has only been made worse by the government’s most recent, incredibly unclear statement about easing the lockdown. The idea that the government think this is acceptable when hundreds of people are still dying every day makes me sick with fear. I didn’t vote for them but I at least thought they cared about the people they were governing.
The only thing that I’ve found actually helpful in distracting myself is reading fanfiction. It’s something I’ve found effective as a relaxation technique over the last year, dealing with my wildly fluctuating mental health, starting my Masters, and this pandemic. It’s easier than reading a book because I’m already familiar with the worlds and the characters, which is a relief when I’m constantly exhausted by all this fear. Escaping into a comforting world is just that… comforting. So I spent several hours doing that, reading through old favourites from my teenage years when I first discovered fanfiction. It just gave me a break from everything. As much as possible, anyway.
Eventually though I got up and went downstairs. I thought that maybe working on one of my anxieties would help my overall level of anxiety so me and Mum went out into the garden to do some filming for a music video. My original idea is now impossible with the lockdown, which has been very upsetting because I was really looking forward to it, so I’m having to come up with something new, something that’s been difficult and frustrating because the original idea felt so perfect. I’m not super happy with the current back up plan but I need something. So me and Mum spent several hours filming [I’m omitting some bits here because I don’t want to give away the video if this is what we end up using]. I have absolutely no energy at the moment so I was completely exhausted by the end of it, even though I don’t feel like I actually did that much. I ended up falling asleep in the comfy chair in the kitchen, sleeping for a couple of hours.
I woke up, stiff and uncomfortable and just as anxious. Apparently trying to work through an anxiety didn’t help. Maybe I didn’t solve that anxiety, maybe all of this is just too big.
I had a shower and then settled on the sofa in the living room. There are so many things that I could be doing with my time but I just don’t have the motivation, the emotional energy. I just can’t see the point – what does any of it matter when hundreds of people are dying everyday, when people are losing loved ones, drowning in unbearable grief? It’s in moments of quiet that these thoughts overwhelm me and I feel my throat start to close up.
I dived back into fanfiction until dinner snuck up on me. Me and Mum ate in front of a Lucifer rewatch – for some reason, it was the only show that didn’t make me want to scream. We watched until we were both falling asleep, until the cats were crawling all over us for their pre-bedtime snack (otherwise they do their level best to wake us up at five in the morning). So we fed them and headed for bed.
It’s hard to admit – maybe because I’m twenty five and feel I should be stronger than this – but I haven’t been able to sleep without my Mum with me for weeks now, possibly longer. All of my mental health stuff is worse at night, particularly my anxiety. It just builds and builds until I’m in a panic attack or worse, a full autistic meltdown. Having my Mum with me, feeling her heartbeat and hearing her breathe, makes things just okay enough to fall asleep, although sometimes it takes a sleeping pill too.
If you’ve been keeping a diary or still want to jot down some thoughts about yesterday, I really encourage you to do so and send it to the archive. The page is here, in case you’d like to submit or learn more about this and their other projects.
Category: covid-19 pandemic, death, emotions, mental health, response, writing Tagged: anxiety, asd, autism, autism spectrum, autism spectrum disorder, autistic meltdown, autistic meltdowns, cat, cats, coronavirus, covid-19, day in the life, depression, diary, diary writing, fanfiction, fear, filming, hopeless, hopelessness, journal, journaling, lockdown, lucifer, mass observation, mass observation archive, mass observation day, mass observations day 2020, masters, masters degree, meltdown, meltdowns, mental illness, motivation, music video, music video shoot, pandemic, quarantine, singersongwriter, sleep, writers block
Posted on December 8, 2018
The other day, I was just browsing through YouTube (probably procrastinating something) when I came across this video.
“Autism is not a disease, it is a developmental disability. It’s about living our best possible lives with this condition.”
I am ridiculously excited that this video exists. Even a few years ago, when I was looking into Autism as an explanation for my struggles, I was still being told that women don’t have Autism or being dismissed because I didn’t fit into the stereotype for Autism (which has come from autistic boys and men). So the fact that this video even exists shows that some progress has been made. At this moment in time, it has just short of a million views. A million! That means that potentially a million people now have a better understanding of Autism in women. That’s completely amazing!
There’s so much good stuff in this video – you really should watch the whole thing. But here are some of main points and some quotes that stuck out to me:
1. Autism covers a wide spectrum.
2. We have emotions.
3. Social interactions can be challenging.
4. Diagnoses can happen at any age.
5. The nuances of dating can be challenging… but we do have sex lives.
6. We have lots of different interests.
7. Bullying sucks.
8. It’s getting better.
As I said, it’s amazing that this video exists and that autistic women are being seen and that people are finally understanding that autism in women looks different than it does in men, and that it can look different from woman to woman. I agree with all of these points but there’s still so much to it, to living with this everyday. So, in addition to these points, this is what I, as an autistic woman, want you to know:
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.