#she tried to talk with me about my autism diagnostic process and the things she said??????? GIRL

[teenagers-from-outer-space-1959]

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[lovepersevering13]

elaborate on tori springs autism

Ok I’m gonna start this by saying that the topic I’m most passionate about in the entire universe is Tori Spring (As well as Michael, Charlie and Oliver) being a very autistic coded character and so this post is a very long info dump about it because it consumes almost all of my waking thoughts.

Anyway, quick summary, I believe that Tori Spring has autism because of her social struggles, mannerisms and general outlook on life. Like how she always talks about not fitting in, she gets really obsessed with specific things (Star Wars and Solitaire) and she struggles to express her emotions, often leading up to an intense emotional outburst (Autistic meltdown).

Forewarning - I am obviously not a licensed psychiatrist (I’m literally just a mentally ill teenage girl) and so I don’t actually have the capability to diagnose anyone, I just have a lot of time to waste studying the DSM-5-TR (Diagnostic and Statistical Manual of Mental Health Disorders, Fifth Edition, Text Revision) and analysing Tori Spring. Also, Autism is different for everyone and this is just one perspective of it based on research and the DSM-5 which obviously doesn’t cover every autistic persons experience. OH, Also, I tried really hard to focus on using ‘person-first’ language when I was writing it but I may have messed up a few times so let me know if I did! Also let me know if there is anything else incorrect here so I can fix it :)

Ok now that’s out of the way I will start with what we know is true: Tori Spring likely struggles with Depression. It’s a generally accepted fact amoungst the fandom due to Tori’s negative outlook on life and suicidal ideation (at the end of Solitiare). Now, why is this relevant? Well Autism and Depression are often comorbid diagnosis, people with Autism being 4 times more likely than Neurotypical’s to experience a diagnosis of Depression.

So she’s already got that going for her, let’s take a look at Solitaire and some excerpts from that which highlight different aspects of the Autism diagnostic criteria in the DSM-5. This is based of what I annotated the first time I read Solitaire about a year ago there may be more that I missed.

A. Persistent deficits in social communication and social interaction

Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

- “No- Tori just held a conversation by herself” - Becky Allen, Solitaire, Page 28

- “I think you’re breaking down.” I cough loudly. “I’m not a car.” Solitaire, page 311.

In this quote Tori is taking things wayyy too literally which is common amoungst many people with Autism due to the way they process information.

- “I think… it’s unlikely that anyone would want to catch a grenade for anyone else. Or jump I doesn’t of a train for anyone else. That’s very counterproductive.” Solitaire, Page 45

Again the literal thinking (I also have this exact thought every time I hear this song).

- “I drift away and picture myself….” Solitaire, Page 33

Ok so I didn’t want to include this entire quote because it’s really long but essentially she’s thinking about what it would be like to be, for lack of better word, neurotypical. To be confident in social interactions and always say the right thing, say things that people are interested in and to not be awkward or shy.

- “I quite like cats, and I saw it for the first time at lunch in the cafeteria. I almost felt like I’d made a new friend,” Solitaire, Page 68

Often people with Autism prefer interaction with animals, this is theorised to be because social interaction with animals can compensate for a lack of social interaction with peers. Oh also a lot of people say that cats are kinda autistic coded animals because of their similar mannerisms to people with autism.

- “Emotions are humanities fatal disease.” Solitaire, Page 346

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

- “I think it’s important to make the effort. Social conventions and all,” Solitaire, page 43

- “I need to control my staring” Solitaire, page 45

3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

- “Then again, I don’t feel very similar to anyone at all” Solitaire, Page 20

Many people who have Autism (Especially Women) often report that they don’t “fit in” with their peers, there are a variety of reasons for this but it is often related to masking and just generally struggling to socialise the same way their Neurotypical peers do.

- “There’s a time and a place for being normal. For most people, normal is their default setting. But for some, like you and me, normal is something we have to bring out, like putting on a suit for a posh dinner.” - Michael Holden, Solitaire, Page 61

This quote from Michael is one of my favourites in Solitaire and I feel heavily related to the autistic experience. It pretty much perfectly describes the experience of autistic masking.

- “I thought it’d be nice to try and rekindle this friendship. But it’s too hard. I don’t want to talk to anyone.” Solitaire, Page 99

- “I’m no expert on social etiquette.” Solitaire, Page 140

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

- “I kick the floor and spin. The world hurricanes around me. I don’t know how long I do this,” Solitaire, Page 84

This quote is just Tori stimming, she stims quite a bit in the book but this was just one example I picked.

- “I watch that scene three times and then turn it off,” Solitaire, Page 102

- “Playing ‘Fix You’ by Coldplay over and over on repeat” Solitaire, (I forgot the page)

These are another two examples of stimming that I wanted to include because it shows different forms of stimming (repeatedly watching or listening to something) that aren’t talked about as much.

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).

- “It’s not a very funny programs but I still seem to watch at least on episode every single day.” Solitaire, Page 100

While this could just be because it’s on tv I figured if she really didn’t enjoy the show she could definitely watch something else. This is probably an example of “preservation” which is a coping mechanism that helps people with autism to find comfort in predictability and routine.

3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

- “The matter of the fact is that Star Wars was actually a major obsession of mine when I was a kid” Solitaire, Page 24

Apparently most children don’t have extreme, obsessions that consume all of their waking thoughts (I cannot attest to this, I’ve been hyper fixating on random stuff since I was like 2). Anyway, hyper fixation is a sign of Autism which is often overlooked in girls because it’s usually something related to pop culture and is ignored as just being “fangirling”.

- “I have already stuck all of Solitaires previous posts. My wall is completely covered.” Solitaire, Page 297

This is only one example but if you’ve read solitaire you’ll know that Tori gets very obsessed with solitaire and especially toward the end of the book I’d argue that it does start to become quite a hyper fixation.

4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

- “I started to feel all this hair on my forehead and my cheeks and how it plastered my shoulders and back and I felt it creeping around me like worms, choking me to death.” Solitaire, Page 15

So this is an example of sensory overload, while this can affect anyone, it is very common in people with Autism as they often have a hyper awareness of sensory stimuli, causing it to become very overwhelming. So this can happen with things like sound as well and I didn’t put it in here but there is another quote when she’s at Becky’s party talking about how loud it is.

- “At some point I fall asleep but I can here all these creaky noises coming from outside” Solitaire, page 65

So this quote isn’t exactly that special but it’s the way she brings it up every time she sleeps, like she’s so hyper aware of the sounds outside that it begins to prevent her from sleeping.

Here are some other miscellaneous quotes that I wanted to throw in because I think they are relevant:

- “Who would I be,” I ask at one point, “if I were any of the Big Bang theory characters?”

“Sheldon,” - Charlie Spring, Solitaire, Page 100

This quote is nothing really I just thought it was interesting that Charlie related Tori to Sheldon as he’s generally seen as another autistic coded character (No matter how problematic that may be, I haven’t actually seen the show I just know a lot of people with Autism think it’s poor representation)

- “I don’t want people to try and understand why I am the way I am, because I should be the first person to understand that and I don’t understand yet.” Solitaire, (I lost the page)

- “I’ve got to do something,” I keep saying,” Solitaire, Page 272

Ok so throughout Solitaire (and ‘This Winter’ and the ‘Heartstopper’ graphic novels) Tori displays a very high sense of empathy. Main examples of this are with her brother Charlie and in that scene where Ben Hope gets beat up at the Solitaire meet up. Stereotypically people with autism have a low sense of empathy but actually it’s a spectrum and many people with autism (more often girls) experience a heightened sense of empathy.

- “Before boys, before sex, before alcohol, before she started to move on while I stayed exactly where I was.” Solitaire, Page 353

In girls signs of Autism generally begin to manifest more during their tween/teenage years. Girls who appeared to be progressing at a similar rate to their peers may begin to fall behind due to the increased social and academic pressure. This quote could however be more related to Tori being asexual, which we will get into now.

Asexuality and Autism

As confirmed in volume 5 of Heartstopper, Tori Spring is asexual. People with Autism are 2-3 times more likely to identify as a part of the LGBTQ+ community. Especially, the aroace community. The studies I looked at said around 30% of people with Autism also identified as aro/ace, this is also more common in women with Autism than men.

Autistic Meltdowns

So in addition to those direct quotes a repeated occurrence throughout Solitaire is Tori’s emotions bubbling up and eventually bursting out… and what could these outburst actually be? Autistic Meltdown.

The main examples that come to mind for Tori are the fight with Michael, that scene where Charlie asks if she’s ok and she starts crying and the scene where she’s talking to Lucas about Charlie at the concert.

Safe Foods

Ok Tori’s obsession with diet lemonade is kind of iconic. People with Autism often tend to have ‘safe foods’ that don’t trigger sensory issues, usually these are specific things with consistent, safe, tastes. For Tori, this is diet lemonade. Another thing to point out about this is the fact that she always uses straws which is possibly either a sensory thing or a routine :)

Ok, that’s about it… I don’t believe anyone would actually read all that but if you did… damn, thanks :))

Some of the resources I used:

https://www.allohealth.care/healthfeed/sexuality/asexuality-and-autism

https://neurodivergentinsights.com/autism-infographics/autism-and-sexual-diversity?format=amp

https://www.theatlantic.com/health/archive/2016/08/the-bond-between-animals-and-the-autistic/623372/

https://socialcaretalk.org/experiences/life-autism-spectrum/autism-feeling-different-wanting-to-fit-in/

https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

https://jackiesilvernutrition.com/articles/autism-safe-food/

[lifeisbooksandcats]

Recently my mom and I were talking and she was saying that she was decorating terracotta flower pots with my niece and nephew. I cringed and said I hate the way terracotta pots feel, how just the thought of touching them makes my stomach churn, sends a shiver down my spine, and physically HURTS the insides of my ears. She said “that’s weird.” then paused a second and said “no, that’s autism.”

I said “yeah.”

She said “you know if you went to a psychiatrist, you’d get that as a diagnosis.”

I said “yeah you’re probably right, but there’s often years long waitlists, it’s a lengthy diagnostic process, and it’s expensive and not typically covered by insurance as an adult.”

She said “what would a diagnosis do for you? Would it make a difference in your day to day life?”

And honestly, no. It probably wouldn’t. But it would give me the validation that I crave for myself. To know I’m not faking who I’ve been my entire life. The validation my brain needs to be able to look back at my childhood self with kinder thoughts and know that she wasn’t just a weird little kid (I mean she was, but still), to know that there was a reason that she never fit in, that she always felt like she was on the outside of her friend groups, that the world didn’t make any sense to her. My younger self deserves my current self to be able to look back and say she was ok, there was nothing wrong with her, her brain was literally just wired differently and that that was okay.

And I tried explaining that to my mom, but the words wouldn’t come out right. I probably only said about half of that above paragraph to her and in a way that made less sense. But I think she understood. Because she apologized.

Sometimes I get so frustrated and I just want to know why my parents didn’t see anything different with me, but at the same time…I was their first kid. It’s not like I had older siblings they could compare me to. I was what they knew. And they did their best. Logically I know that. But sometimes I wish things were different.

[gloriousmonsters]

it's fascinating to see people running the exact same scripts as trensmeds/exclusionists but for mental illness.

I just crossed paths with a post that was a screenshot of a tiktok where someone was clearly frustrated because 'I thought I might have autism but when I tried to bring it up with my therapist she said she literally wouldn't discuss it with me because 'everyone thinks they have it because of tiktok', and the original poster/about 90% of the notes were... celebrating this. Either variations on 'lol based psych' and 'she was right' or people explicitly saying shit like:

'Well, I was trans diagnosed with autism/adhd before it was cool and trendy! I can't believe that the diagnostic criteria is getting made stricter, it's the fault of those transtrenders tiktok kids who pretend to have mental illnesses. I get to gatekeep because I really suffered!'

(Shoutout to the confusing outlier who sagely was like 'and usually they just have bpd' in the tags. just???? just, my fair sir? also source???)

And like. It makes sense and is also so incredibly frustrating for the same reasons as transmed/exclus stuff. When you're a hurt person stuck interacting with a system that makes a lot of decisions about your personal autonomy/function, it messes with your head. It taps into that particular reaction to trauma that there was that one great post about--the mindset you get in when you see people get help when you didn't, and get furious and often default to 'it shouldn't be so easy' or 'why should they get help when I didn't?' And if you're struggling with a system that is, lbr, way more about luck in what specific people you got to talk to than any kind of well-built system, which is historically very flawed and still very flawed... well, a lot of people don't want to admit the system is a crapshoot and the people in it can be wrong so, so often, because then what about my diagnosis? my confirmation that I am what I am? fuck kids with stargenders and self-dxed teenagers with autism, I suffered for this, you can't take it away from me.

Which they aren't. If diagonistic criteria for anything is being made stricter, that's not on tiktok teens, it's on the people who write the criteria and decided that this was how they were going to handle an uptick in people thinking they are/might be autistic. If people are passing anti-trans legislation, that's because they're transphobes, not because of demigirls and non-op trans people. And are all of these kids queer, or mentally ill/ND, in the way they think they are? Probably not. Being a teenager is fucking confusing and often traumatic, and it's also a time when most of them are investigating and trying to build their identities. But I'm willing to bet that almost all are genuinely struggling with something/deviate from 'the norm'; if you want to stop kids from 'believing they're something wrongly' maybe focus your energy on putting the message out that it's ok to be wrong about things, that self-discovery is a process-- in this specifically, how to interact with mental health diagnoses and manage your symptoms, no matter where they stem from, in helpful ways, etc etc.

But please do the bare minimum and don't let personal pain turn you into a bitter, smug asshole who celebrates when they see kids experiencing gatekeeping that could really, really fuck them over, OK? Like physical disability and queer identity, the few 'fakers' you'll 'catch' by being cruel and suspicious will in no way be worth the people dead because only people who REALLY need help should be able to get it.

[soloh]

Right, so here's an elaboration of what I was feeling last night re: Neurodivergency. Long story short, I used to be a right prick about things like self diagnosis, to the point where as a teenager I made an incredibly ableist anti-self dx post on here using an awful slur (and instead of just saying, omg I didn't know it was a slur I just thought it was a run of the mill insult akin to calling someone a walnut brain when they're being ignorant, I doubled down and tried to argue it wasn't a slur 🤦‍♀️ It is. I'm not even going to hint at what it was, just know it was bad) and it's been years and I still feel horribly guilty about it, and the people who called me out on it, unfollowed and/or blocked me were 100% correct in doing so, because while I was a teenager, I was still old enough to know better.

But anyway, as I've gotten older and realised the diagnoses I was given as a teen don't quite explain everything, and accepted that I most likely am autistic (possibly AuDHD, but I'm not quite as confident about the adhd part), and tried to seek official assessment and diagnosis, obviously I've discovered that as an adult in Aotearoa, that's a shit show. Every qualified professional in my region is booked out to a point they're not even accepting waitlist additions, and assessment costs range from about $1000-$2000. I've pretty much given up on getting a dx at this point, at least for the interim.

But after talking to my friend last night and his diagnostic process and what he and his other ND friends have found regarding getting that little official report... it doesn't necessarily mean shit beyond not having people accuse you of lying. There is no real "treatment" for being autistic (I don't count ABA, that's gross and doesn't actually "fix" shit), so unless you're really just seeking to have your life validated with a label, it's not inherently necessary. You know your lived experiences and feelings (and consistently high RAADS-R score 👀😂).

This is a friend who I've always gotten along with, and shared some interests with, but never really had an "omg here's a thing we both really click on" moment, but boy howdy when this conversation started and we started talking about it, that was the click moment.

And my best friend, who was sitting across from me, did that thing where people go, "you're not autistic are you?" then paused and clearly had a moment of "oh wait holy shit", because her face changed so quick when she thought about it for like 10 seconds 😂 And both her brothers are autistic but have very different levels of masking, stimming etc., so she's not totally ignorant to the various ways autism can present either 😅

But yeah idk, I'm still mad at my younger self for being a c-word, and I do wish I had access to an official diagnosis, but fuck it, my partner and my ex think I'm autistic, autistic people around me think I'm autistic, I'm probably autistic, and I'm going to treat myself with the kindness and patience and understanding that I deserve. (And also probably do even more research on autism than I already have hahahaha)

[rosemow-ch]

A part of my autism diagnosis journey

I was 12 years old. My uncle had invited the family to eat at a Chinese restaurant, and I remember it very well since it was the only time I’ve been there. Before even sitting down, he started to make conversation with my mom and mentioned that he watched a film on autism and that he believed I had it. I didn’t understand it back then, I didn’t know anything about autism. My mom’s reaction was a “bad one”(or more like, scared), saying no it’s not possible. And returning home was when I started searching about it.

The information back then wasn’t very clear, but I did feel I related. At this age I already knew I was different. But the more I read about it, I started having my doubts, since I didn’t exactly have all the signs, and doing tests online the results were all the time in a middle or saying I was on the spectrum, but not fully. So I just internalized that I had it but it wasn’t serious enough, and I would see stuff about it once in a while, just to learn more.

When I was in my first year of high school, I noticed my maths teacher treated me kind of different. It wasn’t until two years later that she said her son was autistic that it made sense to me. One time she even told me directly I could tell her if I had “Something”. She noticed it. And I’m sure it was because of her that one time I got sent to the school’s psychologist but when she asked me if I thought I had problems with my communication I said no, so I never got called back and nothing happened. At this age I used to think the problem wasn’t mine, it was my classmates and teachers for not understanding me. I still think that’s right, but maybe it wasn’t in that context.

That year I met my also late-identified autistic best friend. Their mom, without even meeting me, somehow already knew it, just from the stories she’d hear about me and my friend. So one day, my friend asked me if I’m autistic and I just tried to laugh it off, I didn’t know how to answer since I wasn’t diagnosed so they tell me, their mom works with kindergartners so she knows about that. I said I didn’t know.

It was in quarantine, at 16, that I found the online autistic community, and now I couldn’t escape it anymore. I started accepting it, but still not enough to talk about it, and I still didn’t know enough. It was this time I got my first “You can’t be autistic” and me feeling bad about that because I knew that was wrong.

At 19 I was in my first year of uni. I was struggling so much I got to the point of being mentally ill, what I had doesn’t matter to this, just that I was having a very hard time. Once the year was over, what saved me was reading about unmasking. Everything was so clear after that. All this time I was thinking as if autism was just another weird part of me, separate, and not seeing how it affects me on everything. After all, it’s how my brain works, and how other people perceive me shows stuff about them, it’s not my job to make myself look “friendly” so they’re not uncomfortable. I started to become more comfortable saying on the Internet I’m autistic. Self-diagnosed.

At 20, second year, I started unmasking and getting fidget toys with the excuse that it was for all the stress. It was my first step. After some months I got noise-cancelling headphones. And then, one week, my cousin, the one person at uni who would spend time with me, dropped out. I knew this change was big for me, knowing now I’d be a lot more time alone, so I decided to focus that time in printing tests, articles, everything that could help show my parents all the information I’ve learned in 8 years.

It turns out my parents were already suspecting it, and were watching all the popular shows/movies with autistic characters (y’know, Good Doctor, that kind of thing) and I finally began the diagnostic process. It wasn’t as fast as I wanted it. It took months. My doctor wasn’t as updated as he seemed either: “autism is rare in girls”, but he got me the diagnosis. At this point for me it was a big thing how my family was going to react and if they’d refuse to help me, but the first reaction was nice, they reassured me it wasn’t something bad and that “autistic people are very smart”, I shouldn’t be scared.

Now I am officially diagnosed, and while I wish I could’ve had it sooner, I believe my years of researching and learning about it has made the late diagnosed experience better, since I have now a very positive view on it and I’m not scared anymore to talk about it to anyway who knows me.

[longtallciara]

Thinking is my fighting - Virginia Woolf

Originally published on my website during Neurodiversity Celebration Week (13-19th March)

I began writing this as a therapeutic essay, but also with an intention of sharing it.

As I have gotten older I have tried to ask myself, 'Do I really need to share this on social media?' so that I avoid, in my own judgmental mind, having what I would consider an annoying social media presence. Oversharing, attention-seeking, humblebragging, are things that everyone, myself included, is so prone to doing now and my distaste for it can feel borderline curmudgeonly, but I know that innocent people's sharing can just strike right into my own insecurities. Jealousy, rejection, and loneliness. It's an emotional own goal. In light of the past few years, and especially the past several months, I have decided to go back and remember what had brought me pleasure when I was younger, when, although I was struggling, I think I felt more connected to myself. Whilst reading Samantha Irby's book Meaty recently, she had me recall a truly meaningful relationship that I had with my tumblr account in my early twenties. Followed by people who I didn't know personally, I felt an ease in expressing myself. It was an extension of my personal diary, but I was also practising my writing craft, and publishing whatever I wrote. I clicked 'Post' to the void. It felt better to express myself in writing because I had always limped my way through talking to people verbally. The less people I have to tell the following verbally, the better.

Just after my 35th birthday in January of this year, I received my autism diagnosis. On 1st February, St Brigid's Day, I received the report from my psychologist who identified my autism. Reading through it felt like I was not reading about me. I couldn't believe it was me, that this was all reporting back on everything I had told her that ended up aligning with diagnostic criteria. The feeling of 'this is a joke ... a joke that has gone too far' came back, along with paranoia that I had lied to her - and myself - throughout the entire process. Yesterday I got off a zoom call with an autistic mentor for what was my post-diagnostic support session. It was tough - I pulled myself open whilst clutching my stuffed seal toy. I related so much to my mentor, and felt so validated. My head felt so full afterwards, I changed into my new fluffy dressing gown, hopped around on my tiptoes and put my headphones on and listened to 'U&ME' by Alt-J to try and calm down. I had unwittingly booked my post-diagnostic support session for a day during Neurodiversity Celebration Week, and my experience with the mentor was so buzzingly wonderful, that it felt fitting to finish and publish this piece now.

I am still going through a tremendous amount of imposter syndrome and that is because I still hold on to the learned stereotypes of autism that I have seen or read or experienced through other people. I compare myself to these stereotypes as well as other autistic people online - my stims are far more subtle than others, I don't know as much as others do about my special interests, and I have no idea whether I notice patterns or connections more than other people. Although, by the same token, I have been extraordinarily validated by reading posts tagged #actuallyautistic.

The thing I have been most worried about is telling people. I find being around people so hard even at the best of times. So far it has been okay, but there have been a few disappointing conversations so far which have refuelled the idea that I am an imposter. I have been met with age-old assumptions, 'but you're an empath', 'but you're very warm', or an actual eye-roll. I ain't nothing like Rain Man, nothing like Greta Thunberg. I am not a non-speaking super-genius. There are autistic stereotypes which I do not live up to, so it's like I have a lot of explaining to do. Because I have lived and worked in communal settings, I have never said anything about my discomfort because there was some forbearance on my part in accepting that most people need to talk or have the radio on all the time, or this is the normal level of lights people need to be able to see. I sidelined my feelings because I like people, and I thought that I was just being an over-sensitive and annoying killjoy. I didn't know the full story, and neither did they, so I acknowledge that all this will be coming as a surprise to people.

I feel terribly selfish that I only have better knowledge about autism at hand now because I am autistic. My awareness was next to non-existent before I began digging. It's not that I didn't care for it - one male friend and one ex-boyfriend told me of their autism, and I read The Reason I Jump by Naoki Higashida when it came out because I was curious. But in the films and books I had seen/read in various depictions over the years, and even the 'training' I received when I worked in the public sector, they all painted a very narrow and similar picture of what autism 'looked' like. I never suspected that I might be, until the day my therapist, very bravely, asked me, 'Have you ever wondered if you might be...?'

Life is hard enough (and comes with inevitable suffering, that is something that I think we have philosophically accepted), yet on a daily basis we continue to flagellate ourselves for not living up to some spectral expectation. These expectations are entirely made-up (mostly by the media and then perpetuated by us always comparing ourselves to other people, or, the perceptions we have of them). They're imaginary, yet we persistently fail at living up to them. I have always known that most people can relate to this. And yet. The world of work has been a problem for me since day one of my first job. The number of my sick days has always been high, all throughout school and in any job I've had. I have never been able to get through a sizable period of time without calling in sick. Everything has always felt incredibly difficult. The poet Morgan Harper Nichols wrote about being a neurodivergent adult, that you are always 'trying to navigate life's socially accepted checkpoints when everything else is just as hard.' I was always having suggestions thrown at me to try and turn my life around, and I always felt that I must be so useless and lazy. At age 33 I got a full-time job in a bookshop. On paper it is the perfect job - being surrounded by books and it being my job to talk about my number one interest with colleagues and customers all day. Still, I willed myself to get through an entire working week, every week. I endeavoured to be a devoted and dependable colleague, someone who the manager would not regret hiring. I really wanted to make it work, but I felt constantly under threat. I always seemed to get stuck, reverting back to what I meanly called 'being a teenager' - feeling impossibly miserable, ungrateful, lazy. In the year that I worked there I didn't write anything, I had no mental or emotional space to. I went home every night completely depleted.

No matter what convictions I held inside about how to live, there has always been something. A weight, or a block. A block that stops me even though I imagine doing the thing I want to do so much that I am almost convinced I am doing it, or that I will do it; and yet, I can't, don't, and won't do it. I cannot move. A block that in social situations I depend entirely on alcohol to soothe, dissolve. It is a block that can momentarily shift, for example when I decide to embark on a new interest. Last year it was a lino cutting course to give me some nourishment outside of work. I went for three weeks, and then I could no longer do it. Burnout. The most upsetting block is the one I am currently in, being unable to face my book which I started writing in 2020. The block is understandable, the past six months have been objectively challenging. I am burnt out, and have felt swampy for a long time.

The time I felt most myself was in lockdown in 2020, which is awful but true. Whilst retail and healthcare workers were out there every day putting their lives on the line, I was so relieved to be at home. Firstly, so that I was no longer working in an unpredictable public space where I wasn't constantly feeling endangered by people who were not social distancing. Also, it was because I did not have to talk to anybody except my partner, who is always kind to me. I carved out my own routine in which I genuinely thrived. Mostly, it was because I was finally calm enough to be aware that an idea had arrived. I started writing my book, and it was the most precious period of my life so far. The joy of the idea itself, having the time to run with it, and having the space to dive so deeply into research and follow my various trains of thought uninterrupted. It was bliss.

I love and I hate going places. A place is anywhere outside where I live. By where I live, I mean the brick and mortar dwelling. I visualise myself walking out the door and walking into a shop or grabbing a coffee or even just simply going for a walk, just like anyone else. I do these things, I have to sometimes - I need to buy food, and I do need to see friends from time to time. But I cannot explain how difficult it is to leave my home. The hours I have spent dreaming about taking myself out, and getting myself ready, before I wind up talking myself out of it. Sometimes the sun is too much and I worry about how the skin on my face will feel and that people will see me. Even if I dress appropriately for the weather, everything feels too abrasive and cumbersome to balance, carry, or wear, to proceed comfortably. Preparing to dress appropriately still leaves me feeling desperately inadequate. I am always over or underprepared, never at the sweet-spot of being just fine. Even if I bring all my creature comforts away with me to facilitate my habits and routines, just by being in another place that isn't my home throws my entire being out of whack. I don't know how to operate anywhere else. I love my family and friends, of course. I love being around them, and I love when they come to stay. Even though I love them, and I have had an amazing weekend with them, and everyone might be in their own room (no sharing or sofa-surfing anymore), my brain will not calm down until they are gone and I am finally alone again.

When I read Kurt Cobain's journals as a teenager, I was struck by something he wrote: 'I use bits and pieces of others personalities to form my own.'   I don't really know who I am when I am around other people. All I know from feedback is that I can sometimes come across as boisterous or stand-offish. My social anxiety can get the better of me (one ex-boyfriend's uncle said to the group I was sitting in, 'What is she, a mute?').  I laugh at things that I don't think are even appropriate, and steal other people's turns of phrase to use for next time. Thankfully I have met a few people on the way whose souls sing alongside mine, but I still want to be more like them. There is only one person who I do not feel scared around, and that is my partner. I am fortunate to have this single person who understands me, and who can reassure me as my witness that this isn't all in my head. It would be nice if other people could understand as well, but most importantly, accept. To not turn around to me and say, 'Aren't we all...' or 'You don't seem...' or 'But you're very...'; or 'so you're on the spectrum but you're high-functioning' - this came from a person close to me who knew that when I left my job at the bookshop it was because I was neither coping or functioning. I was speaking to my therapist yesterday about my continued imposter syndrome, how 'I seemed to get along fine for the past 35 years, I thought all this was normal,' but then in the next beat explaining the cycle I've been stuck in since I started school of having one sick day, then another, and another, then getting signed off, going back to school or work, then getting sick, sick, and sick again. She asked me, 'How is that 'fine'?' Autism is not about how you perceive a person, but how they experience the world. I need people to find a balance between expectation and acceptance. My ways of being are not preferences, they are my needs. I am 35 now and I am tired. This is not a joke.

In another recent therapy session I said that books are my language. I told my therapist about an idea I had about reading books in which the protagonist is autistic, and that I would highlight passages that I relate to and then give the people in my life copies of that book. I haven't done this with books yet, but I have done this with articles I have read.

Some books and articles I have read so far that have most-closely captured my own experiences: Convenience Store Woman by Sayaka Murata Untypical: How the World Isn't Built for Autistic People and What We Should All Do About It by Pete Wharmby Diary of a Young Naturalist by Dara McAnulty The Electricity of Every Living Thing by Katherine May

This article by Hannah Gadsby: Hannah Gadsby on her autism diagnosis

This article by Naoise Dolan: I'm struggling to talk to friends in lockdown. Being alone has been a relief.

I have always wanted to be a writer. Since I left my job in November, I had hoped that suddenly my creative tap would run freely again like it had before I started. Sometimes I forget about the state I was in when I left and wonder why it has taken me so long to write anything. I am still recovering, and in the meantime I have written out a daily routine for myself to ease myself back into life. I have restarted a yoga routine (since I got covid in July last year, my body all but rejected any extra exertion on top of working in retail. I LOVE yoga, and it has been a slow return to being able to get through a 15-minute video without feeling like I've run cross-country afterwards) and I try, fail, and try again to practise mindfulness before going to bed. Instead of trying to penetrate and navigate the multitudinous caverns of my novel, I am scheduled at 2pm every day to 'WRITE ANYTHING' for an hour. Other hours are devoted to reading and watching films or a show. Those activities are laced with guilt, but I try to remember that they are part of creative nourishment, and go into what one of my favourite writers David Mitchell calls 'the creative compost heap'. When all this stuff does become routine, I'm hoping that the fog will clear and I will climb out of the swampiness. I hope that this gives a helpful glimpse, especially to people who know me, into what is really going on inside me, a seemingly high-functioning person. I am still learning so much about myself that I'm sure more will come to the fore eventually, and maybe I will write about it then. Thank you.

[rhinco]

hey! i see that you rb a lot of posts about having adhd. my ND friends have said that i probably have it and after looking at a bunch of stuff it makes a lot of sense.

can you talk a little bit about what your experience with adhd is like? i don’t have AuDHD afaik, so i don’t know how different that is

💜💜💜

okay hi hi! sorry that this has been sitting in my inbox for so long, i wanted to make sure i gave it a proper answer so i waited until i was less busy

so the first time i went to get diagnosed for adhd i was actually told i didn't have it, but something about the diagnosis process felt weird to me. it was all very practical, i had to do lots of tests and puzzles and stuff, and one of the main reasons she said i didn't have adhd was because i could remember long strings of numbers? which, sure, a lot of adhd people struggle with short-term memory, but because it was under test conditions and i was focusing hard i remembered them. and surely not everyone with adhd struggles with the exact same things, right?

anyways, i went to a different clinic and got diagnosed with autism, and then spoke to my psychiatrist and described the diagnostic process i went through for adhd, and he said that that method was actually outdated for diagnosis. i described my symptoms and he said i could try medication, so i first tried concerta which didn't work and now im on ritalin which is incredibly helpful. so im not officially diagnosed, but im on meds and in therapy and occupational therapy which help with adhd too.

the main things i struggle with are: attention span, focusing, executive dysfunction, and impulse control, but these are by no means the only symptoms (or the only symptoms i experience). also the symptoms you struggle with will probably change over time and depending on your circumstances. if you haven't already looked, the DSM-V gives a good overview of the most common symptoms

in terms of being autistic, it definitely means my experience with adhd is different, but im hoping this is still helpful. and i'm not trying to like.. force anything on you, but since autism and adhd are often comorbid its worth keeping an open mind about being autistic as well, especially since adhd and autism have some overlapping symptoms. this venn diagram lays them out really well imo

the other thing i'll note is that my adhd symptoms are mostly inattentive, im not very physically hyperactive, which is another reason it took so long for me to get medicated. my teachers always thought i was paying attention in class because i was quiet and got good grades, but in reality i was zoned out 90% of the time in class and working myself to death to get good grades

lmk if you have any more specific questions, i wasn't exactly sure what you wanted :3 hope this was helpful though ^-^

[runessystem]

It took me four days to process and actually remember how horrible and traumatic my last ever appointment with my therapist was. (Like literally the last four days I had been feeling hyper vigilant and was unable to go to sleep and I literally didn't even realise why).

Anyway here's a list of fucked up shit my (ex) therapist of three years did, during our last appointment:

It turned out she hadn't even put my recent (of three months ago) treatment plan in the system yet, we literally had to do that together during out last appointment

I asked to see my diagnoses, there were only two old ones (I got three years ago at the start of treatment to get the gov money), and none of them described my symptoms accurately

She told me I didn't have PTSD when I asked her why it wasn't in my files. I've literally been diagnosed with PTSD since I was 15, even before getting therapy at the institute she works for. This woman literally tried to gaslit me into thinking all of my symptoms are from autism, the one and only diagnosis she initiated.

She tried to gaslit me into thinking we had discussed topics of getting treatment at a different institute, or the topic of her leaving (both never happened), to try to cover her ass, because she had announced her leave and her planning to stop all treatment (even the treatment I get from other therapists) in an email, a fucking reply to me canceling the session two weeks earlier.

Did I mention that she replied to my 5(!) Reply emails, asking for a replacement therapist, very distraught, with basically the same very cold and professional email of her telling me she's going to stop all treatment with vague reasons. But when I actually saw her in person for the last time she acted as if it was already clear that she was getting me a replacement therapist.

During the session she acted very cold and distant and interpretted my frustration as agression

She literally told me that she "already does too much for me, she already gives too much" (triggering) when she literally didn't even put my stuff in my files

I tried to tell her that I felt misunderstood, I felt like she didn't really listen and that she misinterprets my symptoms. Like I felt like there was a communication problem. She interpreted this as an attack. Told me so much about her "expertise as a therapist". She said she did so much for me outside out appointments, like discussing me with her colleagues. ALL THE WHILE she continued to discredit my experiences and blatantly belittle and misunderstand my symptoms. she made me re-tell all of the dissociative and traumatic symptoms I experience. When I got desperate and told her I "literally hear voices and they take over and do things on their own with my body" she said "that's a little much, but I guess that's just part of life, and you're the only one that can make it better, have you tried ignoring them?" HELLO???

She triggered two really scary, bad, flashbacks.

She kept telling me things about psychology that I thought were wrong, to discredit my knowledge and paint herself as the only smart one. She said that dissociative disorders are personality disorders (I'm not sure if this is true or not) and she also kept saying I'm not crazy enough to have a personality disorder.

She kept interpreting me setting boundaries within the conversation as attacks and pushed right through them.

At the end of the conversation when I was already tired from crying and having flashbacks I asked her to please stop. I asked her to stop the conversation, I didn't feel like we would get any further with it. She saw this as an attack (which made me reengage because I'm stupid) and then two sentences later she angrily stated that she didn't want to talk anymore and went to her desk to do the rest of the paper work. This triggered me even more because she said it quite loud and angrily and made me completely disengage even though she JUST made me reengage. I tried to explain this to her, in the most kind quiet way I could muster, and then she told me: that she got called during our appointment by her colleague, who asked if she needed assistance. Saying I was the loud one, implying that I was crazy, dangerous, that I was the bad guy and she was the one being attacked by me. And honestly that was really the cherry on top. I hope the reason she left the institute is because she got fired.

TL; DR

Didn't put my stuff in the system nor my files

Didn't put my diagnoses in the system not my files, now I need to do another diagnostic assessment

Gaslit the absolute hell out of me

Triggered me to have two violent flashbacks during the session

Told me wrong facts about my diagnoses in order to sound like the professional and make me question myself

Ignored and pushed away my boundaries

Set up boundaries in order to jab back at my recently ignored boundary.

Told me I was loud, voilent, crazy (but not crazy enough apparently), and that she was the one being attacked by me. I was literally just crying in a chair and having flashbacks while just sitting in a chair.

[creativity-is-rebellion]

Some Things are Not Dialectic

So much has happened to me since I last wrote on this blog. To sum it up in a nutshell: I changed therapists (something I have been meaning to do for a while now), I was hospitalised yet again for just a little over a week this time, voluntarily, for recurrent suicidal thoughts, where I was tentatively diagnosed (yet again) with BPD, and the new therapist I started seeing after coming out of the hospital diagnosed me with Asperger’s. I also started a DBT program, which I am now six weeks into. Previous therapists, if you have read any of my other posts, have diagnosed me with Bipolar I, but after only two sessions with the psychiatrist at the hospital, and in the wake of him talking, at length, with my husband about my history, I was informed that I probably have Bipolar II and BPD. My regular psychiatrist disagrees with this and stated that it is probably complex trauma (or C-PTSD) and Bipolar I. I am inclined to trust the diagnosis of the latter more, as I have been seeing her for two years now. And now I also have an Asperger’s diagnosis from my new psychologist. What a mess. After all these upheavals, I feel emotionally at sea.

I also decided to swap medications at the hospital (the Seroquel was not helping my insomnia and was making me gain a bit of weight) and finally gave Lithium, the supposed “gold standard” of Bipolar medication, a chance. And it made me terribly ill. I was so nauseous all the time that after 4 weeks of struggling along, I had to give it up. I even broke out in a rash, but no professionals, not even my GP, wanted to listen to my misgivings, so I just informed them all that I was coming off it. My psychiatrist respected my decision, but wants to put me on something else. I am reluctant, because I have tried all sorts of medication for extended periods of time, and there are always negative side-effects, or they don’t do what is intended. I was told in the hospital by the psychiatrist that Lithium would be ideal for someone like me who has ambitions, wants a career, and doesn’t want to sleep for 20 hours a day, so when I experienced intolerance, I felt so disappointed. I even spent some time blaming myself. I have found my overall experience with taking medications really draining and time-consuming. I feel as if I am trying, and even doing everything I should, but it’s just not paying off. One method that I have tried in the past on my hospital visit before this one was ECT, and I did find that somewhat effective, but the results were not long-lasting enough. And, after reading about the experiences of those who get regular sessions of ECT, I worry about the possible effects it would have on my long-term memory if I was to go down that route. If there were any negative side-effects within this vein, it would be incompatible with the way in which I want to live my life, including my career goals.

While I was in the hospital, I was referred to a centre that specialised in Dialectical Behaviour Therapy (DBT). I have read about DBT previously, and wanted to try it out when I received a previous diagnosis of Borderline “tendencies” in Norway, however, as I lived in a small town, there were no DBT groups available nearby, and so my therapist gave me a booklet to read up on it on my own. I had also previously stumbled upon the therapist that founded DBT (Marsha Linehan) when I was studying my Bachelor of Psychology. She later admitted that she actually had been diagnosed with BPD herself, and so DBT was a hodge-podge of different therapies and western and eastern practices that had worked for her. I thought the refterral would take longer to process than it did, but it was processed more-or-less straight away after I came out of hospital. I attended the three commitment meetings and was successfully offered a place, and, after all that I had heard and read, was excited to begin. But six weeks in, I feel let down. 

Let me preface what I am about to say by stating that I think there is a lot of good methods to help tackle negative feelings that DBT offers, but a lot of the skills surrounding self-care are competencies I already possess (and so nothing new). There are also some aspects of DBT that are just not really relevant to me specifically, but that’s alright. If I look at it as more tools I can fill my emotional toolbox with, not everything is going to fit. I enjoy and aim for self-improvement, and this is what attracted me to DBT in the first place. On the other hand, I am an analytical person who enjoys testing concepts and seeing if there are any potential flaws in what I am learning, and the method of delivery of the current program I am in doesn’t seem to leave room or space for that. I am finding aspects of DBT condescending, basic, and invalidating. I don’t feel that my prior knowledge or skills are being acknowledged as strengths I am bringing to the table that I can build upon. It is almost as I, along with the rest of the group, am being treated as if I am clueless, and that the therapists and coaches involved in the DBT group sessions are the autocratic, absolute experts on everything we should be doing and what we are doing “wrong,” something that I feel is quite harsh given that most who suffer from BPD also have C-PTSD, or, conversely, that those with C-PTSD can often be misdiagnosed with BPD. After researching some more, I have found that I am not alone in these misgivings. 

I decided to share some of my criticisms just this morning with my individual coach. We met at a cafe near where I live, after I dropped the kids off at school. Towards the end of the session, she asked me directly if I ever felt she had invalidated me in our individual sessions. I decided to be honest and tell her that I had felt that. I have only just started acknowledging past trauma, some of which occurred years ago, to both myself and my therapists. It’s mostly because I feel that it is time to do so, because the thoughts and feelings were coming up more and more regularly, intrusively and involuntarily, to the point where I feel like I can’t ignore them anymore. Three weeks ago, I disclosed to my coach in an individual session about the trauma and sexual abuse I had experienced via school bullying. I told her that she had laughed briefly after I had told her about a boy who had pinched my bottom in front of the whole grade on a dare when I was was 13, and said I didn’t blame her, maybe she laughed out of surprise, but when I also told her that she had, in the same conversation, told me not to worry about “stupid school” (her exact words), she denied having said that to me at all, and got quite defensive. 

She even said that perhaps I had just “experienced it that way,” and just refused to acknowledge that she had said that at all. I felt so gaslighted,so triggered (my mother tried to gaslight me all the time) and am now unsure whether I will continue with DBT. I left really shaken up, which was tough as I had had a really rough week and had actually woken up in a good mood, and had to then work really hard to turn my thoughts back around again. Upon reflection, I think the coaches are badly trained and unprofessional. This might be what is making the delivery sub-par. Maybe it’s just yet another case of “you get what you pay for.” Now, the question is, do I continue, and just try to focus on implementing the skills, instead of worrying about my obvious personality clash with the therapists and coaches involved? Sigh.

Now, to address the Asperger’s diagnosis: I actually feel it is a good fit. She got in an expert who took me through the diagnostic criteria before giving me the diagnosis, and, for the first time in a long time, I felt validated. I have been doing a lot of reading since receiving my diagnosis, and have found a number of interesting facts about females with Asperger’s, such as they are more likely to be overlooked for diagnosis compared to that of boys, as they do not present with the same symptoms, and are often misdiagnosed with (interestingly) Bipolar, BPD, or even OCD, because it was (until recently) considered a diagnosis exclusively reserved for boys. They are overlooked because they tend to be great social mimics (as females generally are more socialised than men), which masks the symptoms and difficulties females with ASD face. I believe that one of the reasons for my life-long fascination with human behaviour (to the point that I decided to study it), is due to my desire to fit in, when I have always felt different. I have, as my husband has also observed, a number of special interests that I enjoy talking about at length in social settings, and often fail to pick up on the social cues of boredom in the individuals I am talking to. But, that’s alright. It is part of the diagnosis. I am working on it. I might not ever get there, but that is alright too. In my research on the subject, I found a delightful blog from Tania Marshall, as well as her book, entitled “I am Aspien Woman,” which discusses the unique struggles of females with Asperger’s. The blurb to the book states: “Have you ever wondered about a friend, a partner, a mother, sister or daughter? Wondered why she says she feels 'different'? Out of step with her peers, she may struggle keeping friends and a job, yet she has multiple degrees. Bright from early on, she may have singleminded focus, sprinkles of anxiety, sensory and social issues, be gifted in art, writing, science, research or singing. Maybe she is a woman on the Autism spectrum, with a unique constellation of super-abilities, strengths and challenges?” I relate to all of this. I was a precocious reader with an eidetic memory from an early age. I have multiple degrees, and am creative, but struggle in social situations. It’s who I am, and I accept it. When I told my GP, who also closely follows my mental health progress, that my current psychologist has diagnosed me with Asperger’s, she dismissively stated that “everybody is different - we are all on the spectrum” - to which I have to say - what a load of crap. There is different, and there is different. I have always been a person that marches to the beat of her own drum, sometimes to my detriment. But it’s just how I am.

So, what if I don’t have BPD, or Bipolar, but rather “just” Asperger’s? I am high-functioning, so I can understand that it took a long time to identify it, but, on the other hand, it feels as if going through all of the struggles I have been through could have been prevented if only I had had a therapist that was skilled enough to really listen to me, to pick up the signs, and to validate me. I am hoping I have that now with my current psychologist, and am looking forward to working together with her toward a brighter future where I can accept myself and also work on my issues in a safe space.

After years of not sharing my thoughts or being as assertive as I want to be, I have found that recently I have been coming out of my shell in this respect, and those around me aren’t liking it. Apart from the example above, on the day I was leaving the hospital, there were a series of delays concerning my release, that, when they all added up, frustrated me so much, I had to say something. I sometimes think that those in the so-called “caring” professions abuse their power. Whether it’s bad training, an authoritative personality, or other traits that are, in my opinion, not suited to these professions that are the cause, it is a dilemma which is vital to address. Of course, #notalltherapists. But, in my long-standing experience with mental health services, and as a psychology graduate myself, it is enough to cause concern. Too often, patients are discounted because of what’s wrong with them, dismissed because the health professional believes themselves to know better, or put into the “too hard” basket for so-called “difficult” behaviour. But what needs to be acknowledged is that the person that is standing in front of them is there because they are seeking help, and should be looked at as an individual, and not necessarily by the box the therapist wants to fit them into. More duty of care, more empathy, and more acknowledgement, is needed.

[alexafaie-asd]

Just some me rambling stuff.

Did some colouring for the first time in ages. Was kinda inspired by seeing some artists on youtube who I follow doing stuff for Inktober and drawing isn’t something I’m good at (and practising it isn’t something I enjoy so...) so I thought to colour in with stuff that could be classed as “ink” at least loosely. Nothing fancy, just some of the pages from a daily colouring calender I got in 2016 which I had planned to do each day, but just like everything I try I managed to keep to the “schedule” for like a week or two at the most before it collapsed and then I felt bad about not finishing it. So of course I got a more complicated colouring calender the next year because I never fucking learn.

Anyway... had a bit of sort of fun maybe colouring in a couple of pictures.

I’ve been feeling a little bit bleugh the past few days since however long ago Thursday was (I don’t know what day it is right now). I got the response from the PIP people about my Mandatory Reconsideration. I spent absolutely ages writing up the letter to explain just how the assessor had misrepresented what I said or just outright ignored my difficulties, pointed out the inaccuracies with the factual stuff (as opposed to anything that could be considered to be that word that means “different people might see it different ways”) and also explained how their failure to treat my difficulties as real was discrimination against my particular disabilities (they’re so called hidden/invisible ones like mental health issues) especially with how they used “high functioning” to claim that I can’t struggle with the things which they agreed I struggled with last time I got assessed and nothing has changed since then except that I have an extra diagnosis now.

Their response was rude, blamed the length of time it took on me even though most of the time was taken up by me waiting on them responding, giving me the face to face appointment date etc. And in response to me telling them how stressful the frequent reassessment periods are and how much anxiety they provoke & how they worsen my conditions, they said “Although the health Professional has recommended a 2 year review period, as you are no longer entitled to PIP then there is no review period required.”  Previously I was awarded PIP at the appeals stage because they found my doctors note that they claimed didn’t arrive in the post until then, even though we sent it recorded delivery and we knew for a fact that it was signed for less than a week after it was sent out. Without the doctor’s note they had tried to say that I didn’t qualify, but with the doctor’s evidence I suddenly did. In this letter they are saying that as the findings of the current assessment are “so different” than that of what was decided at appeals before, they’re using the more recent assessment as they believe its a more “accurate” reflection of my condition and so “supersedes” the previous findings. Except the assessor this time made HUGE mistakes and that’s what I wrote in to explain. But they are treating the assessor’s report as medical evidence even though she was a nurse with no training other than the 10 day course they send them on (and I’ve seen the information for autism - the PDF they are given as recommended reading but not required, is outdated from the early 90s and still uses terms which are no longer in use diagnostically). They are placing more weight on her interpretation of what my difficulties are than the actual medical specialists who have dealt with me personally.

My boyfriend phoned up to complain and ask to start the appeals process (they didn’t include the information on how to appeal in with my letter and the whole letter was written as if I wouldn’t even try and should be glad I no longer qualify as if I’m suddenly not disabled because they say I’m fine). He asked how even with the information and corrections we sent in, they still came to the same conclusion, most of which was a direct copy and paste from the original assessment report. It turns out that because we had complaints about the assessor’s report, they went back to ATOS to get a new person there to look over my case. “So why did they find the same thing with the new/corrected info given to them?” my boyfriend asked. They had even repeated the bit on how I apparently “was not offered alternative treatments or therapy, suggesting you don’t need them” even though we pointed out that in the letter we had originally sent in to them, the people I saw at the multidisciplinary assessment after my autism diagnoses had written that there were two other meds I could try for my bipolar disorder and that they had put in a recommendation, sent to my GP, that I be referred to one on one talking therapy. He said that surely they must have seen us point that out in the letter I sent in asking for the mandatory reconsideration. And it turns out that none of that information was sent to ATOS. So the new person at ATOS only saw what the first person at ATOS wrote about me and came to the same conclusion. When we pointed out that it is the PIP team who are meant to balance things out, they just deflected all the blame to ATOS and said the matter was “out of their hands” as ATOS is a third party organisation so they don’t have any control over what they do. BUT THEY CHOSE TO EMPLOY THEM TO DO THE ASSESSMENTS!! So yeah, they do have control over what ATOS do and are entirely responsible for any outcome if they choose to base the entire thing on what one person who met the claimant for less than 2hrs has to say about what the claimant struggles with.

Its ridiculous! How the hell did they think it was ok to totally ignore what I sent in other than to belittle me when I expressed how stressed and anxious the whole process made me and how demeaning it felt. Their response was just to demean me some more. When asked what provisions there were at the appeals stage (which involves standing up in court in front of three judges who are total strangers) for people who are autistic and struggle in social situations, especially with speaking in public, and they said that they had no idea whatsoever, but as far as they knew there wasn’t anything special. And that we’d have to contact the courts directly. Not that we have any of those details because nothing was included in with the letter they sent. They couldn’t even get the page numbers correct at the bottom of the pages. The last page was numbered Page 7 of 4. Yes that’s right, there were seven pages out of four. How did they manage to break an autofiling section of a document like that? They take that little care with these assessments they can’t even get the documents to be constructed correctly.

When I got the letter I just totally dissociated from everything I would have been feeling. And so its been a rough few days as bits and pieces of emotion have been popping through and washing over me in waves of feeling really shitty. I’m trying hard not to think about the whole appeals process because I know it scares me shitless and I can’t do anything about it now anyway. But its just so hard to cope with people just dismissing my difficulties. Its ridiculous because the criteria have not changed. In fact they got in trouble with the courts for being biased against people with mental health issues as their disability (focussing only on whether a person could physically do a thing and ignoring their criteria of “requires prompting”) and so were made to make changes to discriminate less. Obviously the major fines and telling off did fuck all. Its just so frustrating because my difficulties haven’t changed (unless they’ve got worse) and previously I was deemed to be entitled, so why should that have changed just because I now have an extra diagnosis that even better explains the problems I have? Like previously they tried to claim that bipolar disorder didn’t cause the particular difficulties I have, so I missed out on points in one area. However now I also have the autism diagnosis, that category I was denied points in before is now the only category that scored any points. So its like they are totally ignoring that I have more than one thing going on, and that previously I was still autistic so if I was entitled then, I should be now!

When we pointed out how they were being discriminatory in my letter, they responded not by apologising for what I felt was discrimination, but by telling me that the “Gray Report” concluded that the “Health Professionals” (from ATOS who do the assessments) are trained to a sufficient degree to do the assessments without bias. So I’m there pointing out bias and being told “no, that can’t have happened, this report we had done says there’s no problem.” Except I have looked it up and Paul Gray, responsible for the reports actually wanted changes like making the assessment report results sent out immediately to claimants, but the government is refusing to do so. So how exactly are they meeting what his report asks of them? They aren’t! The Gray Report says that they need to do more to gain the trust of claimants because they are currently so inconsistent that is confusing at best and detrimental at worst. Like his entire report is basically “some of these changes are positive, but there is so much more that needs to be done such as x, y, and z” and the government has said “ah that means we are perfect and doing no wrong.” Like his report didn’t even look at the assessors in great detail. It just says that they should be trained to an adequate level, not that they are. And that they should be unbiased, again not that they are. So why quote that report at me?

Just.... urgghhh. I’m so sick and tired of having to fight past what I’m sensibly able to do just to get what feels like nowhere. Like they even wrote in response to me saying that my executive dysfunction is so bad that if the washing up needs to be done, and I can’t cope with all the steps required to do that, then I don’t have anything clean with which to prepare and cook food and therefore won’t eat. They wrote that those things are “outside the scope of the assessment criteria” and so won’t be considered as evidence. So because I can’t clean the house and can’t then cook the food, that’s ignored as a reason why I don’t eat the food. I must therefore be able to cope with preparing and eating food unaided all the time. How stupid is that? I also wrote how my sensory sensitivities affect my ability to wash and to brush my teeth, so I’ll go days without brushing my teeth when I can’t cope with those feels (or am too depressed) and they said “brushing teeth isn’t covered under bathing, so we won’t consider that”. Like they are both forms of personal hygiene. Arguably keeping your teeth clean is a MAJORLY IMPORTANT thing which can impact your health in so many ways (like you can die from an infected tooth, or from a gum infection). But it can’t be used to build up a bigger picture about how far reaching my disabilities are?

And they said that the section on being able to communicate only counts if you can physically speak and physically hear what is being said to you. So my sensory processing disorder which affects how my brain perceives auditory information and how it therefore responds to said auditory information? Doesn’t count. So the times when I can’t tell what is being said because there is a fan making noise in the background? Doesn’t count. The times when there are multiple people talking and I can’t pick out the one important conversation and everything blurs into one droning sound that is overwhelming and causes me to avoid social gatherings that involve many people? Doesn’t count. My inability to tell what tone of voice I’m speaking with and inability to correctly modulate my tone of voice appropriately so I fail to communicate effectively due to it? Doesn’t count. My sensory overload causing me to shut down and go nonverbal for long periods of time so I can’t verbally communicate? Doesn’t count. Apparently. Even though in the criteria available online on the government website for how they are meant to assess disabilities for the different categories, it really should count. But all they mean is “are you deaf and dumb”? (Sorry for the old derogatory terms, but that is literally all they seem to think counts and the way they seem to be approaching this).

And just I have all these feels and they are not nice feels. And I’m trying to remain strong and positive, and trying to remember that I’m trying to want to exist. But its so so hard. And just reminds me how much I hate my life and how I hate how noone (in the “noone” kind of way, obviously some people) seems to care how I feel and how I struggle. And it really doesn’t keep me away from feeling suicidal. :(

[scriptautistic]

OK so I might be wrong but I recall one of the admins here saying they're French (or that they got diagnosed in France ???)...if I'm not mistaken, could they say more about the diagnosis process & how autistic people are treated in France (do you have accomodations, is there a lot of ableism, etc) ? I'm writing a French autistic character and I'm lacking a lot of information because most of the info about autism in France is in French, and I haven't learned the language.

Hi! You’re remembering correctly, I am indeed French, and I can answer that question.

Autism Diagnosis in France

French healthcare is set up with a primary care system with general healthcare providers(such as general practitioners or family doctors), and then you’ve got specialists, and you’ve got to go through primary care to be able to access the specialists and be reimbursed properly. It works like this for all kind of healthcare specialists, and it’s also the case for autism.

I don’t know the age of your character when they’re getting diagnosed, so I’ll cover different situations. Basically, there are three different times in your life where you can get adressed to a specialized team for diagnosis:

As a young child: It is possible the parents noticed that there was something “wrong” with their child and brought it up with the pediatrician. It is also possible that the pediatrician noticed some developmental delays or tell-tale signs of autism during one of the developmental checkups that are (theoretically) scheduled regularly during the child’s first years.

As a school-age child or as a teenager: difficulties (of an academic or social nature) at school can trigger questions from teachers or parents. Typically, the child would then meet the school psychologist who would do a first screening/evaluation. If the school psychologist thought there was ground for a diagnosis, they’d refer the child to a child psychiatrist.

As a teenager or an adult: Self-diagnosis can lead the character to seek an official diagnosis, they’d then go to a psychiatrist (people younger than 26 can go see a psychiatrist directly, people 26 and older need to be refered by their G.P. if they want to be reimbursed) to talk about it. Another possibility is the character seeing a psychologist or psychiatrist for mental health problems, and the professionnal bringing up the possibility of an autism diagnosis. If it was a psychologist who brought it up, the character would need to go and see a psychiatrist anyway, because only doctors can make official referals to specialists.

In any case, the character would end up seeing a general healthcare provider, who would ask them (or their parents) a lot of question about autistic traits, their impact on daily life and on professional/academic life, etc. If what the doctor hears lets them think that there is ground for a diagnosis, they’d then write a letter to a specialized team, with all the information to justify their demand.

Specialized teams can be composed of psychiatrists, psychologists, nurses, speech therapists, occupational therapists, psycho-motor therapists… There is at least one “official” team per admisitrative region in France (so that means 8 total), in what is called a Centre Ressource Autisme or C.R.A. (which means Autism Resource Center). There can also be teams in other places such as in CAMSPs (Center for Early Medico-Social Action, for children younger than 6), CMPPs (Medico-Psycho-Pedagogical Center, for children up to 18 yo), child psychiatry or pediatry services in hospitals, special evaluation units, or coordinated independant practices.

Your character can probably count a couple of months before being refered to one of these teams. It’s going to be quicker for a young child than for an adult, because it’s considered as more of a priority. For me it took 6 months but that’s because they lost my contact info, I think one-two months is more representative.

As for what the actual autism evaluation would look like, I am going to describe mine, but it’s slightly different from place to place and from team to team. It probably would also be slightly different with a child, i went through the evaluation process as an adult.

First I had a preliminary interview with a psychiatrist, it was a general discussion of my autistic traits and of the things that made me suspect being autistic. I also showed him my health report and my school report. After that he said he’d recommand me for a full evaluation and he told me to wait for them to contact me. I had the full evaluation two months later. It consisted in:

A full cognitive assessment, they used the WAIS-IV

 A language (and more) assessment, which included a spelling test, a reading speed test, a thing where I had to come up with as many words as I could in two minutes, a theory of mind test, a test in which I had to identify and then imitate intonation, a test in which I had to identify emotions on faces, give definitions or synonyms for words, and maybe more stuff that I can’t remember.

What they called a “functional assessment” which consisted in them asking questions about my daily life, about how I manage activities of daily living, how studying and working is going for me, and so on. I think they had a booklet they took questions from. They also made me do some things like telling the story from a picture and from a picture book, telling a story with objects, playing a kind of pretend game… I was filmed during all of this. They also left the room for a few minutes while leaving me with distractions (a big basket of books and stimmy things), they said they needed to talk but I think they wanted to film how I’d react while alone.

An interview with my girlfriend about my daily life, how I manage activities of daily living and whether I put myself in danger and whether I know how to manage money and stuff. Basically assessing my level of independence I guess.

There was supposed to be an interview with my mom to ask about my early development but she couldn’t come, so they gave her a paper form with questions to answer.

 After that, there is one more appointment with the psychiatrist to give me the results.

That’s about all I can say about diagnosis. The whole process took about a year for me but it’s supposed to be shorter, it would have been if they hadn’t lost my contact information. It didn’t cost me anything. It all took place in my local hospital, in a special evaluation unit for adult autism diagnosis. If you have any more questions I’d be happy to answer them.

Attitudes towards autism in France

First I’d say autism is not as well-known in France as it can be in English-speaking countries. If you ask the general population what autism is, chances are you’ll be met with faint memories of Rain Man and not much else. There’s also a certain awareness of rocking with one’s hands over one’s ears as an autistic thing, and it sometimes is used for ableist jokes and mockery. Mostly, if your character were to try and explain they are autistic to people, they’d probably have to explain everything from the beginning because people don’t really have a working definition of autism.

There’s a lot of ableism towards autism among professionnals, even though most specialists I’ve encountered were well-meaning. Asperger’s is still a very commonly-used diagnostic term here, and chances are your character would have to talk about Asperger’s rather than autism to be understood and taken seriously by professionals. If they don’t have contact with an international community, that’s also probably how they’d identify. All French communities of autistic people I’ve found centered around this word. There are not a lot of these communities, and I’m not aware of any big organization run by and for autistic people. Your character may feel isolated and have trouble finding people like them. Some hospitals or autism centers run discussion groups and meetings for autistic teens, I think.

Regarding autism, things that are well-established in the U.S. are often seen as the Brand Great New thing in France. Basically I think you can say we are about 10 years late in that regard. For instance, I’ve met a lot of professionnals who were excited to work with me because they were very interested in how autism presents in girls, they’ve read there are some differences, and so on. This is not a new researc subject in the U.S., but it is here. Another, less pleasant example of this phenomenon is that here, ABA is seen as the Great New Thing, a new efficient treatment that’s commonly used overseas but barely even known here! We’ve got to train specialists and to develop it! That’s one aspect for which I wish we wouldn’t be making progress.

Most non-specialist mental health and medical professionnals know very little about autism. Once I tried to talk about it to a psychiatrist, and he confused it with schizophrenia and schooled me on why I wasn’t psychotic. I had to teach more than one therapist about it. There are still very backwards “treatments” of autism that are sometimes in use, such as psychoanalysis (on nonverbal 5 year olds...). But as a psychology student I can say we’re mostly getting up-to-date information about autism, so hopefully this should get better in coming years.

As to accomodations, I’ve never had to ask for any so I’m not best placed to answer this question. It is law that people with disabilities (I’m pretty sure you have to have an official diagnosis for this) have to get the accomodations they need in the workplace, in school and in higher education, but I’m not sure how easy it is to get them or how well the laws are respected. I’ve seen a few disabled fellow students who got accomodations, one of whom was autistic (he had someone else take his notes for him and was allowed to record lectures). I can tell you a bit more about how to get accomodations in university; if that’s relevant for you to know you can shoot us another ask once the askbox is open again.

That’s all I can think of off the top of my head, if you have follow-up questions I’d be happy to answer them.

-Mod Cat   

If this post was useful to you and you want to support me, please consider buying me a coffee!

[spectrummum-blog]

Monster Mum Unleashed

So this has been my week...

Monday Pokemon Go "episode" (our term for one of our daughter's meltdowns) School refusal Full day at work Son sick

Tuesday Stay at home with Son - hope work understands (feeling pressure mount)

Wednesday Son fine but 48hr school rule so still at home, 7am work conference call with Far East - hope work understands (pressure rising)

Thursday 7am work Conference call 7:45am - Another Pokemon Go "episode" 8am - Drop kids at school Full day at work (with all the usual stresses and frustrations this brings) Parents evening (great feedback - really proud) Evening spent fighting with daughter to do homework...another "episode" and neither of us win.

I'm spent, I'm tired and I feel like the worst Mum in the world because I fought with her.  I treated her as a 'typical' 10 year old.  I got frustrated, I tried to force her to do something she COULD NOT do (the whole “not won't, can't” cycle), I reacted badly...all over bloody exam homework!

My Daughter was diagnosed with Autism Spectrum Disorder about a year ago after 18 months of diagnostic process (AKA moving from waiting list to waiting list).  We knew for a while beforehand (most of her life if I'm honest) that she was not a typical child but the diagnosis helps to reaffirm that you are not crazy (and neither is your daughter).  All the failed behaviour charts, the school exclusions, the unreasonable meltdowns, the sensory aversions finally made sense.

Before I go any further, my daughter is frickin' awesome! She's funny, smart, loving and she's going to change the world someday.

Whilst it is a relief to finally be told after years of uncertainty and doubt, that your beautiful, precious, unique daughter actually has ASD, it doesn't automatically change who you are. You may understand you need to change your approach to parenting (even if just for one of your kids, not both) but it certainly doesn't mean a magic switch gets turned on for you.  I'm a normal person and a normal parent. I'm pretty typical actually (even though I like to think of myself as a pretty cool Mum as these things go!).  I have a house, a car, a full time job, a full time husband, 2 kids, a reasonable social life and I have to say I like a glass (bottle) of wine at the weekends (and ocassionally in the week!). But like most other parents, I get cross, I place demands on people, I change plans, I break down sometimes and blimey, when my hormones kick in...well ask my husband!  The thing is, I know I'm wrong, just like when you argue with your husband or friend and know you should just let it go but can't for some reason.  I have read all the research on how to help children like my daughter, heck, I know my daughter and most of the time I know what makes her tick, what makes her anxious and how to bring down that anxiety.  But tonight I'm spent.  Tonight I did everything wrong...I pushed too hard, I...[daughter's bed time]

So now I feel even worse.  Just got this note from my daughter:

"Dear Mummy, I am so so sorry about all of that and I know it was rong.  I didn't mean to hurt your feelings. I know what I did; I was mean and I hurt your feelings. Albert Einstein didn't lurn to talk until he was 3 but he could talk properly at the age of 9. He was thrown out of school (not literaly) because he knew nothing and he was hopeless. This was all because of his autism. From H xxx"

My heart is breaking, as it often does when I've been a typical parent to by amazing, insightful, smart little girl in the midst of an episode that she cannot control.

To be honest, this is what I wanted to write this blog for.  Not to give advice or guidance on how to raise a child with ASD (sorry but there are better people out there with more to offer than me) but to let everyone know that I'm just a typical parent with an untypical child and hope that someone relates.  I'm fundamentally flawed.  I make bad decisions.  I will always try and do my best but sometimes, after a crappy day or week, I can be pretty rubbish, and I'm certainly not proud of myself.  

But, like many a parent that has a bad day, I am going to have a small glass of red and remember, as my husband and I tell our kids, tomorrow is a fresh start.

[scriptautistic]

Hi! I'd like to know if it would be possible for a character/their surrounding family/friends to not notice/suspect that they might be autistic until adulthood? (I start writing when she is around 20 and I want her to start questioning this about herself as part of her journey) Is this feasible? Is it actually possible someone could be autistic without picking up on it/others picking up on it until this age? And what sort of things could she pick up on/question now to give her the idea? Thanks!

Absolutely. No one suspected I was autistic until I was 24, even though I showed many very obvious autistic traits throughout my life. I did well in school and was obviously very intelligent, so no one considered something that they thought of as a disability for me. I was bullied for being weird, had no friends, and constantly punished for being rude and not having “common sense”. The assumption was, since I was intelligent, that I understood very well what I was doing wrong and it was therefore intentional. I was also always very androgynous and preferred boys’ clothes because they were looser - girls’ clothes were painful for me to wear. Instead of noting the sensory issue, I was just labeled a “tomboy” and told I needed to learn to be “more ladylike”. It is especially common for girls to not be diagnosed until adulthood, since we tend to have an easier time mimicking others and blending in, and may hide meltdowns, etc. 

One thing that is very common for girls is that another girl will take them under their wing during childhood or adolescence. Sometimes an allistic girl will see, for example, a socially awkward girl with no “fashion sense” and take it upon herself to teach her how to put on makeup, dress, talk to others, etc. This is far from universal (certainly didn’t happen to me), but common enough to mention. When this happens, it is often much less obvious to others that the girl is autistic.

Boys (and genderfluid and nonbinary people as well) can also “fly under the radar” until adulthood. It is very common. Many autistic people don’t realize they’re autistic until they learn about it later in life and realize it describes them. The public perception is that autistic people are very disabled, can’t communicate properly, or are extremely rude, and that makes them easy to identify, but that is far from always the case. It is also common for someone to be obviously autistic, but for others to try to excuse away the traits, because they see autism as such a tragic thing they want to avoid the word as much as possible. Such an example exists in my own family: my 6-year-old niece is obviously autistic and has shown EVERY obvious trait from the time she was 6 months old, but because at one point she got burned by a cup of tea that got knocked over, the doctors immediately said that she was simply traumatized and would return to “normal” eventually. She can speak now and goes to a normal school, so my sister insists that she is not autistic, even though she very obviously is.

As for what could bring up the idea of your character being autistic, I can only offer my own experience. At age 24 I moved to a different country and my boss/mentor where I was working noticed immediately that I had difficulty with social skills and odd body language. She had previous experience with autistic people. She started probing me with questions about having friends as a child, how I felt when people laughed at me, etc. She was the first person to see my social problems as something unintentional, even something I was unaware of, rather than something intentional, and decided to gently help me. She was the first person in my life to say the words “you talk too much”. When I thought I was being maliciously made fun of, she took the time to explain to me that they weren’t trying to hurt me, they were trying to bond with me playfully, and that it wasn’t intended to be taken literally. I told her I didn’t see any difference, and she offered to point out whenever she saw me taking things the wrong way, so I could slowly learn the difference. (I still have trouble with this but it’s better than it was). Then she started lending me books written by autistic people. I was astounded - they were describing ME. Finally, the idea entered my head that I could be autistic. It was upsetting at first, since I thought at the time that autism was a terrible disability. It meant that no matter how hard I tried, I would never be normal. I started doing research on my own, and the more I read, the more certain it was that this was me. I was autistic. I asked my mentor about it and she confirmed that she was certain I was autistic. Eventually I talked to a psychologist about it (one who specialized in autism) and it was officially confirmed. After that, it was a slow process of becoming an expert on it, learning how I was different and why, and discovering that it’s not a horrible disability at all. I now consider it simply a different but perfectly healthy type of brain which has always been a part of the human race, and without which we would not have the society we have today. 

I hope this is helpful. Your proposed character sounds very realistic to me. Good luck!

-Mod Aira

I agree with Aira, it is absolutely possible. In addition to what she said about reasons someone might not get diagnosed, I would like to add that even in the official diagnostic criteria of the DSM (which one may or may not agree with, but which is still a good point of reference), it is written “The onset of the symptoms is in the early developmental period (but deficits may not become fully manifest until social communication demands exceed limited capacities).” This means that while someone is born autistic, their neurodivergence may not be noticed as a child because their environment is “easy enough” that they don’t show obvious “"deficits”“ in social skills and communications and such, which is what people tend to look for when they’re wondering if someone may be autistic.

I would moreover like to add my own experience of someone who realized they were autistic in adulthood (well, more late adolescence) because I’ve been told it was a typical one.

While I’ve shown autistic traits for as long as I can remember, no one noticed because I did very well in school, had a few friends (all of which had been found for me by a handy adult) and was just considered “quirky”.

When I was about 13 social rules changed from that of childhood to that of adolescence. Friendships were formed more by affinity and design than by whoever was around at the time, and rules to maintain these friendships became more and more complex.

I started being very isolated, until when i was 15 my only friends were online friends who lived hundreds of miles away. That plus bullying and some family problems (also caused by miscommunication due to my being autistic and no one being aware of it) led me to a depression of which I’m just now beginning to get out of.

While I hid my mental health issue to my parents as long as I could, they finally caught on, and I began seeing a whole series of mental health professionals.

Now, this is the stage at which some people get diagnosed. The professionals I saw were not well educated about autism and failed to notice anything. They also failed to do anything useful for me, but that’s another story.

I ended up by pure chance making an online friend who was autistic and very open about it. After a while of getting to know each other, he told me he saw a lot of autistic traits in me. That’s the point when I started learning about it obsessively, eventually self-diagnosing.

I talked about it with the therapist I was seeing at the time, she agreed with me, told me to go see a specialist psychologist, who also said I was probably autistic. I’ve not yet undertaken an official, medical diagnosis, though it is a project of mine.

I’m sorry this got so lengthy, and I hope you can find anything useful buried in there.

-Mod Cat