Blue's terrible, horrible, no good, very bad day (life viewed through the lens of depression)

[Clues_Of_Blue]

Some of you are aware of my existence by now, but for those who aren't, I'm fairly new to this forum. I've been stumbling my way along with depression for somewhere around seven years. It was triggered by a life event and exacerbated by circumstances since then, which I've done my best to eliminate where possible. About a year ago I changed track with that and made the huge decision to end the relationship I was in. Rough though that was, I finally started to see a bit of progress. I've still had a fight on my hands, to stay afloat and get control of my time and money and my peace of mind, all of which were tied up for a long time in untangling my finances from those of my ex (not his fault, the bank made it really damn hard, and my job and my own state of mind weren't helping).

Now I've started enjoying things again, and am not always instantly down when I'm on my own. I was once a (deliberately) solitary creature who enjoyed my own company and learning everything I could, so it's good to be more like that again. The depression's always there, lurking in the background, but I sometimes go a few weeks at a time without any prolonged episodes. Long enough to start feeling like I'm healing or that my emotions have some concept of cause and effect again. Then down I slam again, sometimes for a day or two, other times for weeks, and it feels like I've made no progress at all. In these periods my mind and my emotions are constantly at war, particularly when I'm alone and/or it's quiet. My mind is calm for the most part, and well aware I'm strong and capable and have strategies and I actively work on those in spite of the depression. My emotions, on the other hand, are running about with flags chock full of negative messages and even though I know it's not (or even close) I feel like everything is collapsing, that I can't deal with it and I just want everything to stop. That's where I'm at, today.

I do have an amazing partner now, who is extremely supportive, and has helped me immensely. My current problem is that I need my friends and family, too. I so rarely have time that isn't ruined by unsociable work hours and also the energy and will to socialise, but my friends are seldom available when I do. In those times I know it may be weeks or months before I can see them again, and I miss them, and that's mostly when I crash again these days. Dunno how to fix that yet, but I need to vent, and here I am. Getting better but having a really crap day.

[Eagle Ray]

Dear Blue,

Yes, I think there is that initial shock phase following a sudden death. There's a numbness. Then it does wear off and hit you. I have to say that even now in relation to my Mum there is still a part that doesn't quite believe it, so the numbness still hasn't fully gone even though it partially has. It hits me in waves, but I still weirdly think I can pick up the phone and ring her at times. I can only imagine it being even more shocking for your friend with his daughter being so young and fine the previous day.

I don't know if this will help, but someone suggested to me that talking to the person as if they are still there can help. I'm sure some people think that that's pathological at some level, but I found it really did help me. I understood she had actually died, but it helped to kind of keep talking to her in a familiar way. I would actually tell her about something that happened in my day or wish her good night. For me, anyway, it was kind of comforting and it did help. I know some others who've lost loved ones do it as well, some quite a long time after the person has died. It's like their spirit is still with you.

Yes, trauma stuff definitely overlaps with ASD. I've worked with kids with autism in the past. Some of them were unquestionably traumatised. I'll never forget the 11 year old boy, highly intelligent but non-verbal, being in a class of special needs kids with very different forms of disability. Most of the kids had high level intellectual disabilities while this boy with ASD most definitely did not. But so often a non-verbal child is assumed to be much less intelligent than they are. He would routinely cry at lunch time and I could see (and feel) the stress being in that class put him under.

Thanks so much for the resources. Did you need a referral to a psychiatrist to get the assessment done? I had very typically autistic stims as a child. I still do but mask them very well now. I'm sure if I was a child today I would have been identified and diagnosed because looking back it was quite obvious. I struggle with eye contact. I also seem to have mild prosopagnosia. A number of other traits too.

[Clues_Of_Blue]

Hey ER,

That all makes sense. The human mind does all sorts of weird and wonderful things to protect itself. We process things in chunks as we are able. I can only imagine what he is feeling and where he will be at as time goes on. All I can do is be there for him when he needs me.

Oh yeah, hubby and I still talk to Sir Pecks every day, even though he died last year. Our little bird is still such a huge part of our world. I'm glad you mentioned it though, it hadn't occurred to me to do the same with my neice, I don't know why. Probably because we didn't see each other that often, whereas Sir Pecks was with me every day. It definitely does help to talk to those who are no longer physically with us.

Sounds like that poor kid was having an awful time. I've mostly interacted with autistic adults, late-diagnosed people like me, almost all of them have horror stories of neglect and abuse behind them, and I'm no different. There are a range of things that make us more vulnerable to this type of treatment by others, along with a tendency toward perseveration and often a lack of appropriate support (if any at all) and frequent invalidation fo our experiences and how we communicate them, which makes us more likely to develop PTSD/C-PTSD - and that doesn't account for sensory trauma, with pretty much everything in the neurotypical world being too loud, too bright, too cluttered, too busy... In this society, autism and trauma go hand in hand.

No problem, happy to help. No, I didn't need a referral, thankfully - I'm sure it would have been an unholy mess if I had to go through a GP to get the assessment. Medicare wasn't involved, so that wasn't relevant (it's worth noting that it costs a bit, $750 for me and I know I got one of the cheaper ones). I had a recommendation from an autistic friend - I was able to organise the assessment by e-mail and the appointment itself was a Zoom call. I considered it a good sign that her service was actually accessible to an autistic person.

I expect a lot of girls with the same stims and behaviours we had in childhood will still go undiagnosed for years to come, unfortunately. Especially the intelligent ones that can connect dots and work around some of the difficulties they have. The people who know enough about it are still few, and I've thus far found medical professionals to be clearly lagging far behind the community in their knowledge. My sister has had to push super hard to get assessments for her boys (aka the demographic most likely to be diagnosed), who have very obvious and outward signs of autism. I guess what I'm saying is that self-diagnosis is valid, recognition can be hard to gain, and if you believe you are autistic, you probably are.

Kind thoughts,

Blue.

[Eagle Ray]

Dear Blue,

Thank you regarding the info. It’s good to know you didn’t need a referral. For me it’s quite complex to unpick because there is intergenerational trauma and I’ve been through a range of traumas from childhood onwards. My birth was traumatic for both my mother and I. It was a breech birth by forceps which is identified in some research as being associated with a higher incidence of autism. Some things I have, such as likely prosopagnosia, could be the result of my mother not bonding with me and being unable to interact with me. I lacked human contact after I was born and she could not show love or be nurturing/comforting when I was growing up. Mum had deeply unresolved trauma from childhood abuse. She also had a hand flicking stim similar to my own. It’s like trauma stuff (on both sides of the family) is all blended up with autistic traits. My Mum became convinced that her Mum had ASD after listening to an interview with Tony Attwood about women on the spectrum. Mum’s older brother’s partner frequently told him he was autistic and he presented very much so, as does my brother. My Dad had a bunch of typically autistic traits too.

For me I don’t fit the profile of an empathy deficit, which I know now is true for many people with autism who can even be extra sensitive and empathetic. There is much variation and complexity. My brother is an ultra rational thinker and very separate from emotions. I am a super feeler first and foremost. A lot of the non-verbal autistic kids I worked with were like this and I had an immediate affinity with them and felt very comfortable working with them. We could sense/feel one another without having to talk. We rarely made eye contact because neither of us find it comfortable, yet we could read each other without those visual cues. Working with neurotypical kids, on the other hand, was like trying to speak a different language for me. It actually came less naturally.

I may look into diagnosis. Initially I’m working through trauma processing with a psych and on health issues. I did one of those quotient tests on masking and I pretty much matched the female presentation of autism based on the table at the end. It could be worth pursuing if I have the energy and I think it could help me.

Thanks so much for sharing your experience. I really hope you get some great support now. I’m sure that will help in terms of managing other things in your life, being a carer etc. I’m so glad you’ve got that support and validation.

Hope your week is going well and sending kind thoughts.

[Clues_Of_Blue]

Hey ER,

No problem. Yeah, I was releived not to need a referral. It's complex for me, too, for similar reasons. My birth was fine as far as I know, but I experienced a similar lack of parental bonding. I grew up with severe emotional (and some physical) neglect. I see autistic traits in both my parents and a lot of trauma in my mother that began in childhood. My siblings are autistic, and traumatised. I've had more than a little trauma of my own in adulthood as well. What I'm saying is this is a pattern I see a lot of, and I live in it. I have a good understanding of where you're at, and how it may feed into imposter syndrome when you're exploring neurodivergence.

Yeah, there are a lot of autistic people with high empathy. I'm not one of them, personally. My sister is, so I recognise what you're talking about. I'm a thinker first, and had to very consciously learn emotional intelligence - it wasn't on my radar at all until the joy of clinical depression caught up with me and I found myself lacking the understanding or control of my emotions that I needed. That said, reading emotions and empathising aren't the same thing - I may not feel much, if anything, but that emotional intelligence has taught me how to temper my coldness when dealing with the emotions of others. I hear you about neurotypicals, adult or child, there's definitely a cultural divide in communication for me.

You have my support, whether or not you decide to seek diagnosis. I will say that neurodivergence can definitely influence how we experience and process trauma, and what kinds of things count as trauma to us. That will probably be quite relevant to your recovery and what kind of treatment works for you. I hope your therapist is taking your intuitions about what does and doesn't help you into account.

No problem. It's a journey now, I'm still waiting on the report for NDIS, then there will be more waiting for them to process the application, then assign a case worker or whatever to do anything with it if support is approved, etc. I expect I'm on my own with it for a couple of months at least. Fingers crossed something useful comes of it.

Kind thoughts,

Blue.

[Eagle Ray]

Thank you kindly Blue.

Yes, I understand what you mean about the difference between reading emotions and empathising. I definitely strongly empathise, almost to my detriment at times as I care and feel so much. I remember once being at a weekend market. A woman was sitting in her car crying desperately. Multiple people were walking past her and either not seeing her or ignoring her. I couldn’t bare to see her suffering alone and so I had to go and ask her if she was ok. I suspect I have mirror touch synaesthesia as I strongly feel others’ emotions, pain etc. My brother describes himself as emotionally avoidant. He is a highly rationalistic thinker and analyser. His rational mind and feeling, emotional self are profoundly separate. The emotions are not recognised let alone processed most of the time. It’s a very clear presentation of what gets called alexithymia. He can never answer if someone asks him what he’s feeling. He will go into a blank stare or change the subject. My mother’s older brother was exactly the same.

If I did get a diagnosis I’m guessing I would be Level 1. It’s very confusing to me though as there are times I feel like a Level 3. When I worked with autistic kids it was the non-verbal and minimally verbal kids I resonated with the most and their world made so much sense to me. Back then Asperger’s was still a diagnostic category and I would sometimes work with those kids as well, but I actually found that harder. They were often highly verbal but quite different from me. Ido Kedar, who has non-verbal autism and communicates with an iPad and wrote a book about it aged 15 (Ido in Autismland), describes meeting a guy diagnosed with Asperger’s. He said they were both surprised just how completely different they were from one another, including their experiences of emotions. I know I am more like Ido.

So I find it confusing to figure out where I fit and whether I do fit into any category. So far the adult autism diagnosis clinics I’ve looked at all cost between $2000 and $3000. It’s a bit beyond me at the moment and I’m continuing to try and solve health issues and process trauma. I have mentioned feeling I’m on the autism spectrum to my psych but it hasn’t become a topic we’ve dealt with, though I think she’s sensitive to it. It’s like I’m so exhausted I don’t have the strength to keep trying to follow through on it.

Anyway, thank you for your support. I get what you mean about the cultural divide. I know Temple Grandin described herself feeling like an anthropologist on mars (which Oliver Sacks went on to use as a title of one of his books). I meant to say too I’m so glad you still talk to Sir Pecks. Their spirits are always with us aren’t they.

Kind thoughts, ER

[Eagle Ray]

Hi again Blue,

 I was just reading about the Reframing Autism conference that was held here in Australia in February this year. Ido Kedar who I mentioned above was a presenter at it and I just saw it on his Facebook page. What is great is that a number of speakers were autistic. Things have fortunately changed from when only non-autistic people provided the narratives about people with autism. I just thought I’d mention it as the conference webpage shows a number of interesting conference presenters. I don’t think I can post a link here but you can find it by googling Reframing Autism Conference 2023.

[Clues_Of_Blue]

Hey ER,

You do sound like my sister. Me, more like your brother, though alexithymia is something you can work past, and I'm a lot better with it than I used to be. Still low empathy and my logic and emotions are separately compartmentalised for the most part, but way better with recognising/managing my emotions and understanding those of others. You don't feel what you don't feel, but you can learn skills around what you do feel and how you treat others.

I thought that too about being diagnosed level 1. Maybe I would have been some years ago, but there was a time I'd been better able to live according to my needs. Now the demands in my life far exceed my capacity, so I was diagnosed level 2. Thing is, how much support we need can and does vary. I guess I'm not too surprised at the situation you described in that book. Autistic people can be so different to one another. It's that spiky profile thing, our skills and passions, sensory experiences and sensitivities can be at opposite extremes. In that way, there can be a mismatch in communication between some of us because we can be polar opposites.

The categories are largely for determining how much support we need, I wouldn't worry too much about how well you fit in one or another. I sure don't fit neatly anywhere, but the psych determined I need a decent amount of help to get by at this point, and that's where the diagnosis fell. Ugh, that's madly expensive. I do know diagnosis is pretty inaccessible to many people. If you do't need it right now, don't stress about it, you can make accommodations for yourself regardless. I guess if your psych is at least hearing you about anything that doesn't work in therapy, that serves the same purpose. You guide her as much as she guides you, it's your healing.

You're welcome. I haven't actually read any Temple Grandin yet, probably should have by now, she's an important educator. Also cheers for the tip about the Reframing Autism conference, could be interesting.

Yeah, his spirit is around. I can almost hear him sing sometimes.

Kind thoughts,

Blue.

[Eagle Ray]

Hi Blue,

The autism conference is specifically on school education I discovered, but I just found it interesting seeing the range of speakers and several being autistic.

Everything you say there about the range of autism presentations in different people makes total sense. I think understanding ourselves is key, and then we can make better sense of ourselves in relation to others and the world around us. And that’s helpful advice - not to try and fit myself in a box, especially as all boxes are very generalised things that no one really exactly fits into.

I’ve got a couple of Temple’s books but read them a long time ago now. Knowledge about autism is a rapidly changing landscape. I know she’s written about having to revise her ideas as she keeps gaining new knowledge, and no doubt would be revising again if she wrote a book today.

All the best and kind thoughts to you too.

[Eagle Ray]

Dear Blue,

 I replied to you a few days ago but it seems to have disappeared into the ether. Basically I was agreeing with all you said above, including not worrying about which category to fit into. All categories are approximations and we are complex beings.

Yes, you do sound similar my brother. His logic and emotions are strictly compartmentalised. It’s good you can see it and talk about it as I imagine it helps to understand it and process it. My brother mostly doesn’t seem able to do so in conversation but very occasionally acknowledges it. However, he writes songs and it comes out in that as a kind of self-recognition. But even then it’s like a logical analysis of himself. He said that when he plays his songs he doesn’t feel anything, and you can tell in a way that he’s going through the motions but not feeling at the time, even with songs that seem like they’re about an emotional topic.

It’s just all difference isn’t it. We are all different, and self-acceptance is very important. Each of us has specific challenges based on who we are. It’s good now that conversations about neurodivergence are emerging as opposed to having “a norm” by which everything else is measured.

 I read a couple of Temple Grandin books several years ago. She revised her own views over time, initially thinking that all autistic people think in pictures because she did, but then subsequently met autistic people who didn’t see the world that way. I really like her honesty and openness. She can grow and adapt her understandings, whereas some people will defend an original theory no matter what (academics sometimes do this). There is often an honesty in autism that I really appreciate. I know I cannot lie to save my own life and I can also adjust my views as I grow and learn. My honesty means I’ve sometimes been taken advantage of by exploitive others as it can take me a while to register manipulative behaviour in others, but I’m slowly getting better at it. This can apparently be an issue for women on the spectrum in terms of unsafe relationships, and I’ve certainly fallen into that trap and ended up in at-risk situations that I’ve then had to extricate myself from.

The autism conference I mentioned above is specifically on school education and autism. I just thought it’s so good there are a number of autistic speakers so it’s not just the narratives of educators, researchers etc looking at autism from the outside in, but hearing voices from those living with autism.

 I hope all is well for you and that you’re having a good weekend. Sending kind thoughts and best wishes.

[Clues_Of_Blue]

Hey ER,

I hate when messages get eaten. I'm a fan of categories, but only insofar as they give me a starting place for research. People get hung up on them, thinking they have to fit perfectly or that they are defined by them. Doesn't have to be like that.

I find the division between my emotions and logic to be a very useful tool, it allows me to analyse and work around what I'm feeling when things are bad, which frankly they often are. I value this ability greatly. That said, I think I know how it may work for your brother with his songs. When I write about emotional topics, I'm not really feeling it. I'm in the space of language use and analysis, detatched curiosity and evaluation. It may be a form of dissociation. He may be in a space of technical proficiency with the writing/music and detached from the emotion. I'm leaning toward a belief that these things come from trauma. I grew up knowing that showing emotions or vulnerability were not a good idea - so I didn't. You don't show them if you don't let yourself feel or engage with them, reasoned Little Blue. It stuck.

That's it, we're all different in both strengths and challenges. The world is a long way off accepting that, the least we can do is accept ourselves.

Revising her views with new evidence is encouraging. I'm certainly not an autistic that thinks in pictures, far from it. I agree about honesty in autistic people. We can lie, I won't say I never do (typically for self-protection, i.e. calling in sick when I'm not mentally up to working and know I'll get picked to bits for that), but there is a strong preference for truth. There are some scary statistics about autistic women being manipulated or victimised, yes. We don't spot the BS fast enough.

Ah, okay. Definitely good to have more autistic voices in education.

Difficult week behind me, but I'm still in one piece. Kind thoughts.