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 2, 2021
Autism Awareness Day always has a theme. Officially, the UN sets the theme but different organisations also choose their own themes; for example, I know that autistica has chosen the theme of anxiety. The official theme (the one set by the UN) is ‘Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World.’ I don’t feel that there’s really anything useful I can add to that conversation, given that I’ve never been well enough to have what society would consider a proper job and that the career path I’m following doesn’t really involve traditional workplaces. So, instead, I thought I’d write about something different, something that has been a really big deal for me this year.
For so long, I just felt like I was broken. And I felt like I was broken in so many places. I couldn’t understand it. Getting the Autism Spectrum Disorder diagnosis helped but there were still all these cracks, all of these problems that no one could make sense of. I had mental health problems, I had chronic fatigue, I had chronic pain, and so on. Nobody could figure out the whole picture and at worst, I was just abandoned by medical professionals, told that my case was just too complicated. That was the most painful part, I think; these people, many of whom it was their job to help with situations like this, were willing to let me continue to struggle rather than put in the effort and help me. It made me feel like I wasn’t worth helping, the toxic best friend of feeling like I was broken.
But in the last few months, with the help of several new medical professionals and some more diagnostic work, the pieces have all slotted into place and, I think, we might finally have the whole picture. So this is the timeline, beginning in 2016 (I might add dates later but I don’t have them all to hand right now).
(I’ve covered some of this before but I think it’s necessary if we’re talking about said whole picture.)
And suddenly all of the pieces started to click together:
THE MENTAL HEALTH ISSUES (TRD, GAD, OCD, AND BPD) AND ADHD ARE, AT LEAST IN PART, CONNECTED TO MY ASD.
MY ASD AND HYPERMOBILITY ARE LINKED.
THE HYPERMOBILITY LED TO A DIAGNOSIS OF hEDS, WHICH EXPLAINS MY CHRONIC FATIGUE, CHRONIC PAIN, AND OTHER PHYSICAL SYMPTOMS.
Discovering that it’s all connected has been a really helpful and comforting revelation. I’m starting to see each condition as a star in one big constellation and that’s a hell of a lot better than feeling inexplicably broken in multiple places. I still have to deal with everything that comes with each of these conditions, of course, but knowing that they’re all part of the same picture does make my health less draining to think about and manage. It all makes more sense. And I am a person that needs things to make sense. So this is all a really big deal.
Category: about me, adhd, anxiety, autism, bpd, chronic fatigue syndrome, depression, diagnosis, heds, mental health, ocd Tagged: actuallyautistic, adhd, anxiety, asd, attention deficit hyperactivity disorder, autism, autism awareness, autism awareness day, autism awareness week, autism spectrum disorder, autistic, autistic adult, borderline personality disorder, bpd, chronic fatigue, chronic fatigue syndrome, chronic pain, depression, diagnosis, diagnostic process, ehlers danlos syndrome, generalised anxiety disorder, heds, hypermobile ehlers danlos syndrome, hypermobility, multiple diagnoses, myalgic encephalomyelitis, obsessive compulsive disorder, ocd, social anxiety, treatment resistant depression
Posted on April 3, 2018
Happy Autism Awareness Day!
Having been posting all week, I’m not sure I have anything new or exciting to say today. Plus I’m really jet lagged and struggling after an allergic-like reaction that I had on the flight to Nashville yesterday. I’m not sure how many words I have in me until I’ve had at least another night’s sleep. But I wanted to post with all the links to those posts and throw in my two cents (I’m in America, geddit…) to the discussions going on all over social media today.
Remember that, regardless of the things you find difficult or are unable to do, you are important and what you do matters. We may not always live up to the standards imposed on us and we may not always be as good as we want to be but that does not mean that what we can manage doesn’t matter, whether that’s exam results, exercising, or writing songs. How you do something, with your unique emotions, thoughts, and experiences, will be entirely different to how any other person would do it. That’s special. You’re special.
I’ll see you all soon. And here are all the posts from this week, all aimed at greater understanding around Autism:
Category: autism Tagged: actuallyautistic, autism, autism awareness, autism awareness day, autism awareness day 2018, autism awareness week, autism resources, autism spectrum disorder, autistic, autistic adult, encouragement, self acceptance, world autism awareness week, world autism awareness week 2018
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.