Posted on April 4, 2021
And here we are. It’s the last day of Autism Awareness Week…
Recently – and not just this week – I’ve been seeing a lot of discussion about whether Autism Awareness Month/Week/Day should be Autism Acceptance Month/Week/Day instead. I’ve seen lots of people saying we’re past the point of awareness and that acceptance should be the primary focus. Of course – of course – I think acceptance is vitally important and the way forward but when it comes to the point about awareness, I’m not sure.
Are people ACTUALLY aware? Yes, many people are aware that Autism exists. But… Are they aware that it presents differently in different people? Are they aware that it presents very differently in females to males? Are they aware of how hard many autistic individuals work to mask their Autism and how damaging that can be in the long term? Are they aware of how much anxiety a change of plans can cause? Are they aware that autistic individuals may need more time to process information than their neurotypical peers? Are they aware of what sensory sensitivities are actually like to live with? Are they aware of what is going on for an autistic person when they’re having a meltdown? I’m not sure many people are.
Autism Awareness, in my opinion, isn’t just about being aware that Autism exists. It’s about having an actual awareness about the experience of it, the full picture – as much as you can when a condition can present so differently in each person. So many people – many of them good and decent people – still don’t have a real awareness of what the main areas of difficulty can be for autistic individuals, how they can support their neurodivergent peers, and how they can be allies in the fight against ableism. I think this is particularly important when it comes to institutions – medicine (both physical and mental), education, etc – because in my experience at least, many people in these institutions don’t know much about Autism at all. There has not been a single medical appointment in my memory that I’ve gone to where I haven’t had to explain at least one big relevant area of my Autism. And not just in specific, personal terms but in general this-actually-exists terms. With all of that in mind, have we outgrown the need for Autism Awareness and Autism Awareness Months/Weeks/Days? I don’t think we have.
I’ve seen other people talking about acceptance as more positive than awareness, that awareness comes from a past of seeing Autism as a problem to be solved, an obstacle to be negotiated whereas acceptance is about the future, about welcoming autistic individuals into society rather than sidelining them. I can completely understand this point of view and I don’t disagree, but I think that’s a big leap to make. Can you truly accept something without, at the very least, a basic understanding of it?
Maybe I’m being too literal. But I think it comes down to more than awareness OR acceptance. Maybe it’s both. Maybe it’s a different word altogether. Maybe we should take the lead from Twitter’s #actuallyautistic hashtag and have an Actually Autistic Month to put the focus on the actual individuals with Autism. I don’t know. I’m not going to pretend to be the font of all knowledge when it comes to this, when it comes to Autism. This is just my two cents. I think awareness is still necessary but acceptance is vital to the quality of life of autistic individuals. I don’t think it’s one or the other. I think it’s a topic that still needs conversation and development.
So… awareness or acceptance? I think it’s both. I think it’s awareness and acceptance.
I hope this week of posts has been helpful and interesting! Don’t forget that April is Autism Awareness Month so, where possible, let’s all keep reading and learning and raising the voices and experiences of autistic individuals.
Category: autism, event Tagged: #actuallyautistic, acceptance, actuallyautistic, actuallyautistic twitter, asc, asd, autism, autism acceptance, autism awareness, autism awareness day, autism awareness month, autism awareness week, autism awareness week 2021, autism resources, autism spectrum condition, autism spectrum disorder, autistic, autistic adult, awareness, awareness vs acceptance, world autism awareness week, world autism awareness week 2021
Posted on April 3, 2021
Since I wasn’t diagnosed with Autism Spectrum Disorder until I was 20, that meant two decades of struggling and struggling particularly when it came to social skills. But despite finding socialising awkward and stressful, no one ever thought much of it. At most, I was labelled extremely shy. The idea that I was autistic simply did not exist – I didn’t behave according to the stereotype so it was just never considered. But still I struggled. So I thought I’d share how I coped with that and what strategies I employed to make socialising easier. Hopefully they’ll be helpful to some of you. Having said this, these are very specific to my experience, the areas in which I function better, and the areas I find more difficult so they won’t necessarily apply to everyone. But I thought I’d share them just in case, just in case one person finds one example helpful.
As I said, I found social skills very difficult to make sense of as a child and teenager. I found it difficult to process and participate in conversations, for example, making friendships and school relationships potential minefields. So, to compensate, I paid great attention to how other people behaved and interacted, analysing and cataloguing it until I had somewhat of an internal database to draw from. Having said that, I don’t think it’s as simple as just copying other people, at least not for everybody; for me, I think the fact that I’ve always done a lot of writing has had a significant impact on my speaking abilities: it taught me a lot about language, about the flow of words, etc. In a sense, it was like practicing social interaction by myself.
There is definitely an element of ‘masking’ (artificially ‘performing’ social behaviour that is deemed to be more ‘neurotypical’ or hiding behaviour that might be viewed as socially unacceptable) when around people but that’s something I want to talk about in a separate, more in depth post. This is not a post that will teach you to mask (something that can be helpful in certain circumstances but become detrimental over extended periods of time); it’s a post containing some tips and tricks that, over the years, I’ve found to be helpful in make socialising less stressful.
Diagnosed as a teenager and older, it can be very difficult to find support and strategies as most of the information is dedicated to young autistic children and the parents of autistic children. So, for those of us diagnosed later, we’re forced to learn how to cope in social situations by ourselves. These are some of the things I personally did to improve my social skills…
I spent the majority of my life stumbling awkwardly through social interactions but once I discovered that it was due to being autistic, I felt a lot less self conscious about it because I understood where it was coming from. And while I can’t and don’t intend to speak for anyone but myself, I’ve had very few negative reactions to disclosing my ASD in social situations. The majority of people are, at most, curious and want to understand; many people barely react. But the fact that many of the people I talk to know that I struggle socially and may mess up (and sometimes fall spectacularly on my face) is comforting. I don’t have to worry about what they’ll think of me. I’m still me, whether I’m articulate or flat on my face.
Category: about me, anxiety, autism, tips Tagged: advice, asd, autism, autism diagnosis, autism resources, autism spectrum disorder, autistic, autistic adult, autistic student, conversation, eye contact, late diagnosis, masking, personal experience, social anxiety, social awkwardness, social skills, speaking, tips, unknown people
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
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…