Should I...do anything different? Good resources to learn more about it maybe?
Do I have to tell people? Is it weird that I want to?
I noticed that Attention to Detail was where I scored lowest on the autism quotient assessment I was given compared to all other scoring areas, Does anyone know if there's anything significant about that?
Also Hello
Welcome to the neurodivergent club - we're glad you could finally make it!
Some sketches of advice that I can try and fill out once I have more time:
- You haven't changed, you just happen to be armed with a better understanding of yourself now. If you're ever overwhelmed or feeling down about the diagnosis, try to remember this because in a quantitative sense essentially you are still exactly who you were the day before your diagnosis.
- You don't have to tell people. I'd recommend taking this one slowly because sometimes people's reactions can be weird - they can be condescending or patronising, they can reject you, they can deny your diagnosis etc. so imo it's important to be calculated about it and to have a few responses at the ready if you happen to encounter less positive responses. Unfortunately some people might treat you differently if they know you're autistic too so it's worth taking that into consideration.
- I think it's very positive that you want to tell people - that makes me think that you accept yourself and that you aren't feeling stigma or shame about being autistic. I would make an effort to cultivate and protect this attitude towards yourself because it's very important.
- It's hard to say what the attention to detail score means specifically because "lowest" doesn't therefore necessarily mean "low". At a wild guess, given that the incidence of ADHD for autistic people runs between 20-40% approximately and given that you're late diagnosed, this would be an indication that, in your own time, you should consider the possibility that you may have ADHD (although keep in mind that co-occurring ADHD and autism doesn't really look like either condition independent of one another and that's a whole post that I feel like I should draft for this sub one of these days...)
- Off the top of my head, it's worth looking into autistic burnout, unmasking, and your sensory profile. It's possible that it's worth looking into autistic catatonia (another post I need to draft...) depending on whether you experience episodic depressive periods, especially if they seem to be unresponsive to the typical treatments and therapies for depression, because there are a number of novel treatments and preventative measures for this, some of which I have been exploring in partnership with my psychiatrist.
- I'd recommend Unmasking Autism by Devon Price (there's rumors of a book club happening on this someday soon), We're Not Broken by Eric Garcia, Taking Off The Mask by Hannah Belcher, Autism and Masking by Felicity Sedgewick et al. - take a look at any of those books and see if they resonate with you. They should all be available on Anna's Archive.
- There's a debate in the autistic community over terminology but generally speaking the consensus is that we opt against person-first language (I have autism, they are a person with autism etc.) and for language that centres autism (I'm autistic, autistic people etc.) Terms like "on the spectrum" tend to be frowned upon. Asperger's is a term that is mostly deprecated in medicine and psychology although there are at least a few countries which are holdouts on this matter. Asperger was not the first professional to describe and study autism - it was actually Grunya Sukhareva but she was a woman and—worse yet—a soviet! 😱 so Lorna Wing (debatably) named Asperger's after an active eugenicist who collaborated closely with the Nazis, of course. Describing autism in terms of "severity" is frowned upon because it divides the community and it's basically assessed on how much your being autistic inconveniences neurotypical people and how well you mask rather than a genuine appraisal of how severe your experience of autism is. Framing it in terms of "higher/lower support needs" and, at times, "higher/lower masking autistic people" is preferred. Also try to remember that neurodivergent means a broad array of atypical psychologies and developmental conditions and so there's neurodivergent/neurotypical (with neurodiversity referring to the entire span across these two points). To be precise, the terms autistic and allistic refer to austistic and non-autistic respectively and so it's worth practising saying "allistic" when you mean "non-autistic" but avoiding saying "neurotypical" in this case because it excludes people who have ADHD or experience mental illness etc.
That's all that comes to mind immediately.
I try to keep a reasonably close eye on this community but my health and my commitments fluctuate so feel free to ping me if you ever want to get my take on anything. I guess it's pretty obvious already but my interests include late-diagnosed autism, ADHD, co-occurring ADHD & autism, unmasking, psychopharmacology, catatonia, and mental health & trauma. If you ever have questions about these topics in particular and you ping me then you're probably going to goad me into writing an effortpost.
Good luck and remember to be gentle with yourself!
Would you perhaps happen to know anything about autism co-occurring with OCD at all?
BE
Also thank you immensely your response was helpful beyond description
I don't have much about autism co-occurring with OCD and if you have identified this in yourself or you've been diagnosed with it then please don't take this as me invalidating either - I'm no expert and I'm certainly not an expert when it comes to you.
My advice for an autistic person who thinks they might have OCD would be to withhold judgment on that front until you have a good grasp of what autism is and how it presents in you in particular.
The reason being that there are a lot of autistic traits that can closely resemble OCD and so I reckon that it's best to do some thorough investigation into your experience before you arrive at a conclusion.
For autistic people, "perseveration" is a phenomenon that is extremely common. This takes on a lot of different forms but on the outside it often looks like ritualistic repetition of behaviours or patterns of speech. (This is going to get a bit normative and a bit pathologising so you're going to have to excuse me for that and you'll have to take this as laying the foundations of understanding perseveration but it's far from the final word on the matter.) These repetitive behaviours are deemed to be problematic or without purpose, e.g. repeating the same "script" each time you meet a particular person where the first time it was purposeful but the repetition of it becomes "useless" or repeating an action beyond its "usefulness" to the task, such as continuing to clean over an already cleaned surface.
Internally perseveration often presents as looping thoughts and thought spirals, which can feel very compulsive too.
The other side of this is that the world is pretty damn chaotic and overwhelming for most autistic people, plus allistic people are operating on an implicit set of rules that we autistic people didn't seem to be provided with, and so we tend to get a great sense of comfort and relief from things which are certain and from repeating patterns of behaviour in a particular way. Breaking from these patterns which provide a sense of security, especially without a good reason, can be distressing because those behaviours are like our own little islands of certainty in an ocean of unpredictability and being without that can be enough to cause a meltdown or a shutdown for an autistic person.
Autistic people tend to be pretty black-and-white thinkers. Some of it is just part of the deal with being autistic and I'd argue that a significant part of it is because an autistic person has probably spent a long time figuring out the best way to perform a procedure to achieve an optimal outcome for themselves, so to them it's the "right" way to do things. (Which is kinda funny when you get two autistic people working together on something but they each have their own different "right" procedure for the task they are doing together - it can lead to a lot of friction.) Breaking from your "right" way of doing something can be frustrating and distressing, which is another thing that can resemble OCD symptoms.
I suppose stimming/stereotypies can look like OCD in some respects as well.
I think that OCD and autistic traits that resemble OCD are generally qualitatively different. I don't experience OCD so I can't speak authoritatively about it but if you are engaging in a behaviour or thought pattern which feels compulsive to you then developing an understanding of how the experience feels for you is really important in distinguishing one from the other.
With perseveration, behaviours might be hard to pull yourself away from but it shouldn't feel particularly emotionally distressing to cease the activity. Sorta like if you're swimming laps in a pool and you achieve your desired number of laps but you decide to keep going for whatever reason (or reps with weights or making something with handicraft... that sort of thing.) If you opt to keep going longer than is "necessary" but you aren't doing this behaviour to keep an impending wave of anxiety at bay then it's probably perseveration not OCD.
On the other hand, if you don't want to perform the behaviour but the thought of stopping it gives you feelings of impending doom and your behaviour is driven by a way to manage or avoid anxiety which is directly connected to the activity in your mind (e.g. "Every time I wash my hands, I must wash them 12 times from start to finish or otherwise I'm going to get sick and die") then that is pretty much squarely OCD. The distinction here is that something like knitting can help alleviate anxiety about other things - work stress, relationship stuff, generalised anxiety - and so it can feel soothing to the point where you want to just sit in your room and spend hours knitting but you aren't going to bring on a panic attack if you put the knitting needles down because you feel like you must do a certain amount of knitting or else.
In a similar way, for autistic people breaking from your "right" way of doing things is going to feel maybe awkward and uncomfortable, and potentially even distressing to a certain degree, but it's really just about having your preferred procedure and/or preferred outcomes. Some people might put socks on before they put on their pants because it provides their ideal outcome - one where your socks sit nicely without having to mess around with them like you would doing it the other way.
For me, one example of this is that I need to put my socks on straight - if I put them on skewed and then twist them to adjust them into place, the tension on my feet is uneven and it's just uncomfortable for me until I take them off, so my strong preference is to put my socks on straight and to take them off and redo the whole process if a sock is misaligned. I don't feel the overwhelming and irresistible compulsion to take my socks off and put them back on a particular number of times. If I straighten a skewed sock on my foot, I can live with it - it's annoying and I don't like it but I don't experience waves of terror or panic associated with it and it doesn't cause intrusive thoughts or anything like that.
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Thought loops and spirals are more difficult to distinguish though and having no experience of OCD, it's kinda above my pay grade but an autistic person is going to have positive, negative, and neutral thought loops whereas with OCD thought loops we could take harm OCD as an example - a person with harm OCD might experience a battleground in their own mind whenever they pick up a knife and someone else is around. They don't want to hurt the other person. They have no intention of hurting the other person. The idea of hurting them is distressing to them. Yet despite all of that they might deal with really intense, persistent, and distressing thoughts about harming that other person every time they touch a knife and they can't just "move on" from thoughts and visualisations of them doing it.
Then for stimming, it's pretty simple - it should feel soothing and comforting or as a way of expending nervous energy. That sort of thing. It's repetitive behaviours that are generally non-harmful (behaviours like drawing on a cigarette or picking your skin would beg to differ here) which you have a strong preference for doing. They should be associated with feeling better and they help you regulate your nervous system. You should generally be able to opt for when you engage in stimming behaviours and typically you should be able to cease the behaviour without it intruding on your day-to-day life.
For example if you touch something with a gross texture, you're probably going to shake your hands. This is actually a really common form of stimming seen across all people and it even extends to animals too. Behaviours like this can look like OCD because it's this pattern of stimulus and response that plays out every time but the difference is that you don't feel bad for shaking your hands, you want to shake your hands, there isn't any particular psychological investment in the behaviour, and you could suppress shaking your hands and it you won't feel like the world is going to end or get intrusive thoughts about how the next time you hop in a car you're going to have a car crash because because you didn't shake your hands this time, that sort of thing.
There's a caveat here in that if you are already overwhelmed or overstimulated and you're at your limit then you might feel a compulsion to stim to help regulate yourself and attempting to suppress the stimming causes a meltdown or shutdown. The difference here is that the things aren't directly connected in your mind, the urge is different, and you can redirect stims whereas I think that OCD behaviours can't really be redirected; if I'm really emotionally distressed, I will engage in self-soothing behaviours to help me cope with the distress and if I don't stim/if I stop stimming then I will become a mess but I can probably choose from a range of stimming behaviours that soothe me so I'll pick whichever is the most effective and appropriate one for the situation. For an OCD person, if one of your behaviours is switching lights on and off a certain amount of times then as far as I'm aware you can't reason with yourself and settle for turning the screen on your phone on and off or doing the same with your TV - it has to be the light switch and there's no compromising on that. Doing otherwise will be the cause of emotional distress whereas an autistic person might find it really soothing to flick a light switch so they'll do that to relieve distress which comes from elsewhere in their life.
Usually if it's a repetitive behaviour as a response to feeling bad, that's probably stimming. If it's a repetitive behaviour that must be done or otherwise not doing so will directly cause you feel bad, that's probably OCD. It can be a fine distinction to make sometimes but that's probably the easiest rule to use here.
I'm not a doctor, not a lawyer, not an expert, and not a person who experiences OCD so take it all of this with a pinch of salt.
Sorry for the long ramble. I hope this has helped make sense of the distinctions between the two.
Much higher occurrence of ASD in OCD people than in the general population to the point that there's evidence for having similar genetic markers
although keep in mind that co-occurring ADHD and autism doesn't really look like either condition independent of one another and that's a whole post that I feel like I should draft for this sub one of these days...
Pleeeeeeeease ping me when you do, I would love to read this.
❤️ Thanks again for more awesome comments, I love reading your words.
I'm planning on doing a book club on Unmasking Autism next month, and I'd definitely recommend reading it along with us. Or ahead of time, if you got the reading autism that makes you tear through books like a ravenous beast like I do. Downloads here: https://hexbear.net/comment/4392441
Is there any humour to be found that I see these two books advertised next to eachother when googling the one?
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Just the bitter laughter of someone who knows how bad things actually are tbh
Others have written good stuff I just wanna say that after I got diagnosed I got very focused on not being a "bother" to "normal" people. While I think we should strive to create a space for all, I also think that strive goes both ways. I am also a person who is welcome in the group, and so it should not be all up to me to make space for others. I've talked to friends and colleagues about this, I point out what I do to make others feel welcome and I point out what I would appreciate for others to do. The talk is not always easy, and sometimes people get mad.
Almost all the time though, people come back and concede that I am correct and that they were initially predisposed to thinking a "group problem" was an "egon problem" but after talking it thru they realise that they too have to do something to solve the issue.Also I wanna say that the reason I call this a "diagnosis" and not a "disease" or "disability" is because I belive there is nothing wrong with me. Society is just not organized/furnished/structured in such a way as to fit me, which means I spend a lot of energy on fitting into society, which means I am spending more energy/effort/work than my peers on just existing.
Due to that way of thought I always encourage all ND people to fight for their right to exist in the world. We shouldn't just fit in, we shouldn't just change ourselves to fit others. We should instead as a society work towards making a space wherein we can all exist, not just the "normies".
Hi
I don't have many ressources, but be careful who you tell about this diagnosis. The worst part about the diagnosis was the way people treated me after they had learned I got it. Best case scenario they deny that you are autistic. Worst case scenario they actively harass you. Most will think less of you for it. It may sound doomerish, but you are living in a eugenicist and ableist society most likely. Be yourself, listen to your needs and don't try to please others all the time is the one advice I wish I was given.
If you want to be a real™ communist™ who organizes™ the next revolution™ by being normal™ , people smell fakeness and like confident weirdos more than anxious doormats.
