'undiagnosed' + Christmas ( Autism + ADHD)
Louise
Epiphanies Host
Bear with me - this is a tricky one.
I was seeing discussions elsewhere this week by autistic folk about how places stuffed with autistic/ undiagnosed but highly likely autistic folk could sometimes be terrible for anti - autistic attitudes. I could immediately think of workplace examples myself and of my own behaviour when I was undiagnosed.
Someone on that other site posted something that made sense to me: they were talking about the damage ABA (applied behaviour analysis techniques - basically conversion therapy/abuse for autistic people) could cause and also mentioned how society and family can end up 'doing the same thing, training an autistic person to camouflage and mask and fly under the radar, burning out regularly and ultimately becoming hollowed out and sick'
That's when a penny dropped for me that I had been in many ways traumatised into conforming by school and family which helped me get through things like job interviews ( which are heavily weighted against autistic people) and helped me keep a job but at the cost of a lot of intense misery and burnout for which the bill finally came due last year and I was incredibly lucky to get very good and appropriate help (which without money and a very privileged job I doubt I could have got) which helped me enormously with recovery.
But I continue to have massive problems with a parent who aggressively denied it when I first was identified with ADHD ( I have both that and autism - it was identified first) and who has a very autistic-me unfriendly set of attitudes/ expectations.
In discussions in autistic spaces about the problems many autistic people had with older parents denying that they ( the adult kid) were autistic - it was frequently pointed out that autism/ ADHD are highly heritable and that our parents are normally who we are getting it from - but come from a time when it was highly stigmatized or blamed on parents so understandably may reject the idea or because they're undiagnosed themselves and have had to struggle may say ' everyone's like that! You just have to get on with it!' instead of making harmless changes that make things better.
Hilariously it used to to be the worst ultimate torture for me was Christmas: the time of enforced family togetherness with noise, upsets in routine, food I can't eat for sensory reasons where a refusal will offend, being forced into proximity with family members who give me massive anxiety attacks and meltdowns, horrible unexpected surprises from presents, expectations to read other people's minds and buy them acceptable presents, massive executive function demands for planning, travelling, packing and gift giving, sensory hell of crowded public transport because everyone is travelling and not having any safe space to retreat to to recover (expectations to socialise! Danger of making terrible gaffes while socialising- being drained by socialising till I get more and more exhausted and irritable - then the massive row!) and on top of all that being deprived of all my 'safe' things that help me cope because I'm in someone else's house. Just a massive nightmare.
Since becoming aware of why that is and my partner and their son also being neurodivergent, we've changed our Christmas to make it much more friendly for neurodivergent-us. But I have a parent who doesn't understand that and so for that parent we all force ourselves to dress up and visit and do our best to survive.
The heartbreaking thing is parent is almost certainly some flavour of neurodivergent themself - they are very like me in many ways but they've gone down the uber- socially conforming high- masking, 'everyone has to be respectable and do what society expects or get blamed and shamed' route which they used to traumatise me with and I still bear massive inner scars and am incredibly nervous around them as a result. This is the person I should have the most compassion for and at the same time it's so distressing visiting them, and at Christmas they redouble their demands for the kind of high- stress badly- coped with visits that upset me most.
So Christmas is still a source of distress for me and them.
So it brings up a lot of thoughts for me - has anyone else experienced the 'undiagnosed' effect in themself or with others?
Does this chime with you?
How do we reach older generations and others for whom it might be a thing?
Given that churches are er... the original cause of Christmas and often have a lot of older people in their congregations - should it maybe be something churches should talk about with an awareness that many people are undiagnosed, raising awareness so fewer people feel they have to inflict and suffer needless harm for 'Christmas' and so they don't inadvertently drive away family who love them?
I was seeing discussions elsewhere this week by autistic folk about how places stuffed with autistic/ undiagnosed but highly likely autistic folk could sometimes be terrible for anti - autistic attitudes. I could immediately think of workplace examples myself and of my own behaviour when I was undiagnosed.
Someone on that other site posted something that made sense to me: they were talking about the damage ABA (applied behaviour analysis techniques - basically conversion therapy/abuse for autistic people) could cause and also mentioned how society and family can end up 'doing the same thing, training an autistic person to camouflage and mask and fly under the radar, burning out regularly and ultimately becoming hollowed out and sick'
That's when a penny dropped for me that I had been in many ways traumatised into conforming by school and family which helped me get through things like job interviews ( which are heavily weighted against autistic people) and helped me keep a job but at the cost of a lot of intense misery and burnout for which the bill finally came due last year and I was incredibly lucky to get very good and appropriate help (which without money and a very privileged job I doubt I could have got) which helped me enormously with recovery.
But I continue to have massive problems with a parent who aggressively denied it when I first was identified with ADHD ( I have both that and autism - it was identified first) and who has a very autistic-me unfriendly set of attitudes/ expectations.
In discussions in autistic spaces about the problems many autistic people had with older parents denying that they ( the adult kid) were autistic - it was frequently pointed out that autism/ ADHD are highly heritable and that our parents are normally who we are getting it from - but come from a time when it was highly stigmatized or blamed on parents so understandably may reject the idea or because they're undiagnosed themselves and have had to struggle may say ' everyone's like that! You just have to get on with it!' instead of making harmless changes that make things better.
Hilariously it used to to be the worst ultimate torture for me was Christmas: the time of enforced family togetherness with noise, upsets in routine, food I can't eat for sensory reasons where a refusal will offend, being forced into proximity with family members who give me massive anxiety attacks and meltdowns, horrible unexpected surprises from presents, expectations to read other people's minds and buy them acceptable presents, massive executive function demands for planning, travelling, packing and gift giving, sensory hell of crowded public transport because everyone is travelling and not having any safe space to retreat to to recover (expectations to socialise! Danger of making terrible gaffes while socialising- being drained by socialising till I get more and more exhausted and irritable - then the massive row!) and on top of all that being deprived of all my 'safe' things that help me cope because I'm in someone else's house. Just a massive nightmare.
Since becoming aware of why that is and my partner and their son also being neurodivergent, we've changed our Christmas to make it much more friendly for neurodivergent-us. But I have a parent who doesn't understand that and so for that parent we all force ourselves to dress up and visit and do our best to survive.
The heartbreaking thing is parent is almost certainly some flavour of neurodivergent themself - they are very like me in many ways but they've gone down the uber- socially conforming high- masking, 'everyone has to be respectable and do what society expects or get blamed and shamed' route which they used to traumatise me with and I still bear massive inner scars and am incredibly nervous around them as a result. This is the person I should have the most compassion for and at the same time it's so distressing visiting them, and at Christmas they redouble their demands for the kind of high- stress badly- coped with visits that upset me most.
So Christmas is still a source of distress for me and them.
So it brings up a lot of thoughts for me - has anyone else experienced the 'undiagnosed' effect in themself or with others?
Does this chime with you?
How do we reach older generations and others for whom it might be a thing?
Given that churches are er... the original cause of Christmas and often have a lot of older people in their congregations - should it maybe be something churches should talk about with an awareness that many people are undiagnosed, raising awareness so fewer people feel they have to inflict and suffer needless harm for 'Christmas' and so they don't inadvertently drive away family who love them?
Comments
I'm not sure about how churches can help deal with all of this. Given that "family" is a cult for many churches, and the "holy family" is supposed to be some kind of type, I find it all rather close to the bone. So much of this seems to be core church culture, and the idea of the "church family" so dear to the hearts of both clergy and laity, that there are many layers to unpack if anything is going to change in a helpful way.
OTOH, how many clergy are neurodivergent, and undiagnosed? How much of clergy training consists of a form of ABA, with various additions?
It's fascinating when I think of how Jesus and the disciples were pretty much an archetype of 'found family'. 'Who is My mother and who are My brothers?' etc.
But yes, Christmas (since we only have the one celebration) has exhausted me for the last 20 years I did it in the family. Work now exhausts me to the point where I need to opt out of the fresh hell of families.
And yes a million times to your point about work. That's another bit people don't get - I need weekends to recover, and recovery is not compatible with doing loads of Things. Including visiting - or indeed a lot of church related activities.
I have a birthday in the festive season which the rest of my family want to celebrate in ways I don't want and cant turn down without causing them enormous hurt so that really resonates with me. I also get the 'return to work from the holidays exhausted rather than refreshed' thing so I totally sympathise.
I'm taking leave this year both before and after where it's just me doing my own thing but my employer has a very generous leave policy and I know that's not possible for many people and that parents with children can't just drop out when they need alone time.
I almost wish there was some kind of public health campaign to inform people how not to make Christmas/big holidays a torment for neurodivergent family members and to advise them that so many people are undiagnosed as well, so they should assume by default that there are neurodivergent people in their orbit and should also consider that maybe it might also be them...
I'm OK with Christmas as we always have a completely quiet boxing day. (My husband is, I believe, undiagnosed Aut/ADHD)
It's holidays I struggle with. I love going to Germany to visit my son and family but also long to get back into my treasured routines. We are off to Majorca in January - it will be great fun - but, same issue, no routine.
I do my level best to make visits home as non-stressful as possible for my son, but
a) I don't always get it right and
b) the timekeeping issue causes stress all round. (Getting up late - not an issue. Making himself a late breakfast - not an issue. Not wanting to eat the lunch I've prepared because he's only just had breakfast and isn't hungry - is a bit of an issue. Wanting to stop mid-afternoon to make himself a late lunch - not much of an issue. Not wanting to eat the family dinner because he's only just had lunch and isn't hungry -FFS!!!!)
Last visit he complained that I put a lot of effort into cooking for my daughter, but minimal effort into cooking for him, (fair point) so I pulled out the stops to make him a nice meal, which he didn't eat, because he had stayed awake till 3am reading, and wanted a very early night the following night, and didn't want a big meal ahead of a 8pm bedtime.
I do have a question. I think my son is amazing. He has so many good points. I think he's one of the best people I know and I am proud of myself for having produced him. But it seems to take very little (FFS, you said you wanted me to cook you a nice dinner and I have!!) for that to be the message that he hears, rather than "I think you are amazing!" And I don't know what I can do about that.
I don't know if it would work NEQ but I know of a very fancy shop that does what I 'd call 'cheat' cooking for dinner parties - so you can get really fancy healthy or otherwise home cooked type stuff pre-prepared but it lives in the freezer and goes in the microwave!
Now I don't know anything about cooking but there must be ways of doing this as they do, or stuff that works well with this - so maybe cooking/ eating could be done asynchronously? You do the fancy cooking at a time that suits you and when son wants the fancy cooking it comes out the freezer and it's ten- twenty minutes in a microwave and you/ he just have to pop it in and press the buttons?
I used to use this (shop bought mode) for Christmas dinner but it doesn't work for more than two, so this year we are going full goblin mode and filling the freezer with stuff everybody can graze from or easily make for each other.
Yes that brings us back to RSD.
I learned about that here and now recognise it in myself. ( Thanks @Boogie !)
I can do a difficult, draining but successful days interpersonal work with people (you know what I do for a living) and then because I thought I saw eg. a momentary expression of disapproval on someone's face I can fall to bits about it and ruminate about it for days afterwards about how terrible I am and how much I must have offended that person and I ignore all the good stuff!
One thing I've learned to do since I realised I'm AuDHD is to challenge that and to interrupt those kind of ruminations with different self-accepting and affirming ways to think about the situation.*
It's not a complete cure but it has started to radically shorten the rumination period and to get me back on a happy even keel more quickly.
Obviously I can't fix that for your son I can only say that in my case the more I've learned, the more support I've found to affirm myself as a neurodivergent person the better it has gotten.
It sounds like you are doing lots to support your son and it's hard that it doesn't fix RSD. The only thing I can suggest is to keep being supportive the way you do - it may help eventually. I would have loved to have had such a kind and accomodating parent, if it's any consolation!
* PS @North East Quine One thing I've learned is that historical research is my key special interest which is good and restorative for me and quickly distracts me from feeling bad as I get into it - so if encountering RSD not rewarding all your good parental efforts - and they are good - then maybe treat yourself to a good research session with lots of rabbit holes to go down? Or something juicy and tricky to transcribe. Now so many Scottish records are available digitally, instant gratification from the archives is possible even on just a mobile phone. As we both love historical research I'll throw that out there!
(As a family, we tend to do lists and then coordinate so we don’t buy duplicates - though typically do some additional presents too - but afaik no one in the family has the surprise issue.)
Confession - today's plan was to do some writing before getting showered and dressed and I'm still in my PJs.....
Actually, today would be a perfect example of why my son thinks he inherited his ADHD from me. I've been all over the place; books, British News Archive, Scotlandspeople, google maps, just to nail something down. En route I spotted a couple of really interesting newspaper articles on the same page as the newspaper articles I was actually meaning to read. It's what makes me a good researcher, but poor at actually producing finished published work.
I just wish my son realised how much I admire his good qualities, I hate that he frequently thinks I'm having a go at him when I'm really not.
Pardon me for sticking my nose in...
When I've had a relative who seems to be down on him/herself, or who I suspect might think I'm judging them negatively, I've occasionally written them a letter. One that is filled with very specific traits, acts, habits, behaviors, and attitudes that I really appreciate in them, find admirable, am impressed by, think lovely, etc. etc. etc. And not a "but" in the whole letter. Not a single negative. (They tend to run about four or five pages typed). And end up with "I love you, x".
Examples would be Mr Lamb--admiring him for his energy, the way he can stay up all night with a family at the hospital and never complain about it in the morning; how I appreciate the way he unloads the dishwasher each a.m. so I can work in the kitchen; the fact that he is a favorite with little children at church; his voice, which is a nice deep bass and I love to listen to it; his sense of humor, which is reprehensible but exactly what I like; the time he took off after some young vandals who nearly killed a busload of children through their farting around on the road, and he put the fear of God into them (not physically, I hasten to add, but it was impressive); the fact that he's patiently put up with a hierarchy that routinely overlooks him when it comes to needs like offices, etc. because if he didn't put up with them, the community we serve would go unserved; the fact that he has great skin
It's fun to watch the recipient read it. They keep looking for the "but..." they're sure is coming. And when they don't find one, they generally end up in tears.
It's more coming from the AuDHD side but I found this a useful explainer
https://embrace-autism.com/rejection-sensitive-dysphoria-in-adhd-and-autism
Thanks
After sister went to bed the chaos evaporated and grandson carried on a very intelligent conversation with his grandmother.
Question: how to handle a tormenter that happens to be the sister?
There are times I have seen them interact very well with each other. Two weeks before they had come to our place for a few days. They got out some minibox cars and played with each other for hours.
I've always - even pre diagnosis - advocated for the children to be given space when they need it, and now they're older I support them in speaking up for what they need.
My father-in-law insists on washing up after big family meals. He claims the dishwasher wastes electricity but I suspect he is Autistic and likes the time to himself. That’s an easy win for everyone!
@NEQ I wonder if it might help to ask your son to write down what the ideal family celebration would look like for him - then you could see where your expectations overlap and diverge. Likewise, what would feel ok as way to tell him if he needs to do something differently and what would feel ok if he needed to ask you to do something differently.
Yes, I'm very wary of CBT, it's OK for some people, but not others, whereas it's talked about as a panacea. I suppose for the NHS, it's cheap.
On the run up to Christmas, I'm going to several carol concerts, which is always fun, but for Christmas Day itself, I'd really rather be on my own.
My sister has invited me to share her Christmas in the past, but it's always a full-on family thing, with lots of guests that I don't really know.
Similar with my boyfriend's family.
So I'm quite happy, now that I can do what I like, to get up slowly, open presents, have Christmas music playing, get phone calls from family, and watch DVDs or listen to the radio or whatever I feel like.
I also like to go on a long walk on Christmas Day, alone.
(I've never been diagnosed with anything, but I'm pretty sure I'm on the spectrum somewhere).
Resist, Reframe, Redo the Bullying, the Lying, the Harassment”: A Qualitative Investigation of Social Anxiety and Therapy as an Autistic Person | Autism in Adulthood
https://www.liebertpub.com/doi/10.1089/aut.2024.0009
Speaking from personal experience having done CBT and learned CBT techniques before I was diagnosed I see a definite problem in how it's practised from my point of view - it simply didn't take into account that my reality as an ND person was different. We know from the research on thin slice judgements of autistic people and the way neurotypical people dislike many of the ways autistic people interact with them that there are real problems which go beyond RSD and probably play a role in causing it.
So making assumptions that what you fear or reckon you experience isn't there and just needs to be evidenced away when it bloody well is there is the kind of thing I think Thunderbunk is describing as 'gaslighting' and I would recognise as a problem too. Also if a problem comes from sensory differences then exposure or reasoning it away doesn't work.
I personally found I could adapt some self- help tools I'd picked up from CBT to suit me in a way that has been helpful and I know there are qualified professionals doing similar things.
Someone I was following online recently mentioned as an autistic person with ADHD how just about all the concepts and theories he'd found genuinely useful had originated in the community and only afterwards been picked up by researchers and backed by formal research. As more autistic/ ADHD people enter research or 'come out' within the research community there's less of a time lag but it still needs to be borne in mind that when it comes to stigmatized groups and other people thinking they can study us from outside that that can go badly wrong or just lag miles behind.
Neither of course do you want wellness bullshit and pseudoscience but there is a big and growing academic/medical professional 'lived experience' community who it's possible to plug into and follow the new research as they bring it out and discuss it from within the context of shared lived experience which (as I've experienced it), has been a positive and beneficial thing
His suspected Autism manifests in a fastidiousness, that ensures the washing up is done very well indeed!
Replying separately to @Gramps49 -
I have such fond memories of my grandparents as a kid growing up undiagnosed. They were an oasis of acceptance for me - they seemed to be able to sort of 'take a step back' from things in a way that I think was harder for my parents and they were marvellous allies in many ways.
It sounds like you're really being a great ally for your grandson.
I don't know about what age things work at for young people but something that works for me is my Loop ear plugs. You can keep them on a special holding cord round your neck and they have different strengths - some of them cut noise down but still allow for conversation, some cut out a lot of noise.
They might be an option for someone too young to have expensive noise cancelling airpods/ headphones linked to a mobile phone. I wear mine ready for deployment round my neck to buy me a bit of calm and time and distance if an annoying noise starts up
I’d certainly agree re unadapted CBT - a big problem is that few people are actually trained and supported to do adaptations.
So would I - I’d also suggest that if that is primarily what’s happening in the CBT, it is being done poorly.
A problem is that a lot of manualised CBT is offered on the hear hooves look for horses principle in primary care - and what people with more complex needs require is individually formulated approaches developed in collaboration with them.
(I’d also add I am sick and tired of being referred people with autism to be treated for [insert name of random anxiety disorder here] when, whilst it obviously possible to have both ASD and an anxiety disorder, it vastly more often the case that the person’s needs in terms of their autism are not being met and that is the issue that should be addressed.)
But the advantage of looking at self-help literature is that you can take what works for you and dump the rest.
Thank you for your suggestion.
No real suggestions except I was a quiet introverted kid and my sister was an attention seeker. Until someone gives a diagnostic to someone who constantly needs to have attention, I am not going to say I am on the spectrum. Yes the attention seeking is genetic, my Mum, my sister and my neice have it. It is not the same as self centred they just struggle unless they have someone elses attention. To this day my sister sees me primarily as her childhood built in playmate and can not understand how I might prefer to sit in a chair and read a book rather than have her attention.
My parents dealt with this by making bolt holes for me. One was my Father's study. My sister's attention seeking meant it was out of bounds for her, but I was allowed in provided I was quiet. That meant I went in curled up in a chair and read. Indeed looking back I suspect one chair was deliberately moved out of the centre of the room so I could use it though it was also my father's prayer station (but a normal armchair as far as any outsider could tell).
Not sure that bolt holes are possible but a space to escape to when he could get away for a break from younger sister for a while might help things.
Sorry to be inquisitive, and ignore me if you like. It just sounds rather familiar from somewhere in my life, and I'm trying to track down why.
I know the Loop earplugs work well for my 18 year-old niece, as she's got 2 or 3 sets and has been using them for a few years now. She's even recommended them to her 11 year-old cousin (the only one of us with an official diagnosis...). I haven't tried them myself because I get nervous/tense when I can't hear what's about me - very short-sighted and I tend to listen to things as well as look.
When it comes to family parties, my family is used to folk vanishing to a quieter bit of the house, or into a book, then reappearing when we want to see people again. Trying to do that around Sandemaniac's family can be more difficult...
I simply like a quiet Christmas. Always have done. Unfortunately, many see this as a kind of insult. Life is much simpler now I am retired and can almost always spend Christmas alone with my dear wife.
One very kind relative let me retire to a quiet room to escape her noisy party. I was almost dumbfounded to be in the presence of someone who understood. It was a unique experience.
Unfortunately our Christmas is shaping up to be terrible. The relative we were all going out of our way to please has pulled off a perfectly timed masterstroke of hurtfulness and I've been very badly distressed by it. Expectations are high for Christmas and it will make things worse that I can't make expected calls and visits because I've lost my ability to mask/put a face on/ fake being OK with this person. And I will be cast as the callous uncaring villain who 'ruins' Christmas because I can't manage this!
Looks like I have to come to terms with the fact that I can't meet this person's expectations and play happy families to the degree that they want without losing my ability to cope and that I'm going to get rejected even further for it if I protect myself and it will hurt.
Sending hugs and prayers 🕯🕯🕯🕯🕯❤️❤️❤️❤️❤️
Last year both of us actually did catch Covid and it was such a relief not to have to go. I've never been so glad to be unwell, it was totally worth it.
My other half is very bravely going to try to talk tactfully and politely to said relative tomorrow about the mayhem they have caused. It's completely beyond me at the moment. I'm burned out with them.
Sitting thinking about family history and stuff I've heard from other family members, I think it's not impossible that three generations of women, possibly four, in my family were all some flavour of neurodivergent and masked a lot, because in former times if you didn't mask successfully you could face being unmarriageable or ending up in the asylum or poor house, so it was taught to me like a matter of life and death, with raging at me if I slipped up and consequent trauma and crippling anxiety on my part, which has all flared up.
It's been an enormous liberation to me to know who I am and why I react to some things the way I do. It doesn't solve everything but it makes it so much easier to cope and to avoid situations which overwhelm and distress me but Christmas means being expected to go back into those situations and right now it is too much. I don't think I can do it and maybe this time I do need to be honest about it as I think I'm past faking.
My recollection is yes they do have some trouble with silence to a certain extent. Slightly difficult to disentangle, as we have a different pattern of hearing sensitivity which might be Mum, me and my nephew. So all our homes are quiet. They need to be aware of attention but my sister could soothe my neice by running her fingers up and down her arm during a church service while quietly getting on with other things with the other hand. We never had dogs, Mum felt it was unfair on the dogs to have them in the places we lived. Our cats preferred those without this trait absolutely, and usually hung around with my Dad, until my Grandma came to stay though I was tolerated. However, who gave attention was not particularly of concern, they did not seem to fixate, just as long as someone did and a dog might have worked. Oh when an infant waking in the middle of the night and sneaking into parents bed so quietly that they were unnoticed was also a trick they pulled.
I'm now wondering who this stranger is and what happened to them! It really hurts. There had been the occasional delusional or very odd thing from them from time to time over the years but I had no idea of the extent of this and I talk to them at length every week! I'm completely blind sided by it.
I'm so happy to have my own small neurodivergent family about me where everyone is caring of each other's needs and relaxed about them. It's kind of an experiment as it's the first Christmas together where we've all known what flavour of neurodivergent we are and what might need accommodating for each person.
14 days of people with various conflicting sensory needs who usually need an entire flat apiece but now in one flat is going to be quite something but we all know about each other and love each other and know that it's OK to take time out and retreat to a bedroom and nobody will be miffed about it.
As can false accusations, as people try to make sense of confused short term memories.