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 January 12, 2019
I first found myself unable to speak when I went to see the doctor for my anxiety and depression, although I didn’t know that that was what it was at the time. I’d been referred to the ‘Wellbeing Service’ by my GP (who I’d been seeing since childhood). I have always struggled with anxiety and so my Mum – my hero – came with me to provide support and any extra relevant information I might forget in the moment.
But the anxiety built and built. I walked into the room and sat down and in that moment, I stopped being able to function. I felt like I had this massive weight on my shoulders, so heavy that I physically couldn’t lift my head. I stared into my lap, unable to move. I couldn’t even move my eyes. And even if I could have, sustained eye contact felt impossible. That’s something I still struggle with (there’s a blog post about that here). The meeting of eyes feels so incredibly personal, like they’ll see all of me or I’ll see all of them.
And I couldn’t speak. I knew what I wanted to say – I could just about hear my own voice in my head above all the anxiety – but I couldn’t physically say them. My throat felt painfully tight and my tongue refused to cooperate. I was trying to speak, trying to function, but I just couldn’t.
I was told that, if I wouldn’t talk, they couldn’t help me. That still upsets me all these years later because, to me, it seems so obvious that I was struggling with real, difficult anxiety. We walked out and suddenly the words exploded out of me and I was standing in the street outside, screaming and swearing and sobbing. I felt so abandoned.
From there, I went to a series of doctors and therapists but was unable to speak. My Mum spoke for me: we would discuss it all in detail before the appointments so she knew what I would say if I could. It was difficult and traumatic and I felt like I was getting sucked further inside myself with every experience of being unable to talk.
Eventually I ended up seeing an EMDR therapist called Mark. We sat on chairs in the middle of a big empty room that had a glorious view of London at night. Sometimes we sat on the floor and played dominoes. I couldn’t speak and I couldn’t look at him but after a while, we started using a white board and pen. Writing has always come to me more naturally than speaking. So he asked questions and I replied, filling the board with scribbles.
But in the end it wasn’t to be. Maybe it wasn’t the right thing, maybe it wasn’t the right time. We’ll never know. I ended up taking a break from all types of therapy. I just needed some space. And then, in the summer of 2014, I went to see a psychiatrist and I knew things had to be different. I couldn’t do it again. I needed to talk.
I don’t want to give the impression that selective mutism is a choice. It’s not. I didn’t simply decide to start speaking again in these highly stressful situations; it’s so much bigger than that. There was a shift inside me, an unconscious realisation that talking was the only way to create change. One of my parents describes it as “a leap for survival” and she’s not wrong. It was about survival, although I wasn’t conscious of that at the time. At the time, it was just another step in a long line of steps.
What I’ve learned throughout all of this is that everything changes. It’s like shaking a box full of puzzle pieces, trying to get all the pieces to land in their respective places. With every shake, it lands in a different arrangement and life looks different. Different things are possible. Sometimes it’s even enough to see what the picture is.
Somehow I was able to talk. I couldn’t tell you how. My psychiatrist has told me since that he didn’t initially believe that I struggled with social anxiety, and anxiety in general, because that first impression of me was so confident and articulate. He understands now that it was a matter of survival, desperation making once impossible things possible.
It’s been several years since I found myself unable to speak. Even though I continue to struggle with anxiety, it’s never again manifested in that form. But even now, I hate the phrase ‘selective mutism.’ It implies that there’s some element of choice, like I was (and others still are) choosing not to speak. If I could rename it, I would call it Situation Specific Mutism. I think that fits better.
I wish I could offer some wise words or some quietly brilliant advice to those still unable to speak. But I think the most important thing is finding someone who gets it and not giving up until you find that person. If it doesn’t feel right, it isn’t right. The right person – the person that will get you and make it work for you – is out there.
Somebody once told me the story of a boy who was only able to participate in therapy when the lights were off but up until that point, all the medical professionals in his life had refused to do that because it wasn’t how things were done. Sometimes it’s ridiculously simple but for whatever reason, people don’t want to make those adjustments. But there are people out there who will, whether that’s having someone with you, whether you need to write rather than speak, or use another medium to communicate. In my experience at least, sometimes you have to treat the anxiety in order to make communicating easier.
The last thing I want to leave you with is an app that might be useful. It’s called Emergency Chat and it’s designed for communication when speaking is difficult. You hand it over to someone and it shows a message that you can personalise to what you’re going through so that the other person can understand it better and then you can type back and forth, or not. The message itself may be enough.
I hope this has been helpful. And if you’re going through something similar, know that I’m thinking of you and sending good thoughts.
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.