Differing ideas than partner around divulging diagnosis

[Neri]

So, I'm writing this for advice and suggestions.

I am, kind of, over the moon (very happy-for those who find idioms confusing) about receiving my late diagnosis.

I want to tell everybody I meet that I'm autistic, but my partner thinks it should be kept on the down low and this feels like prevarication to me (I just leant this word this morning, it means to mislead or omit the truth, kind of like obfuscation but more avoidant). He's already told me NOT to tell our next door neighbors and I hadn't the heart to admit that I already told them, and they were fine about it.

I'm the kind of autistic person that wants to educate, advocate and show a face of autism that might challenge some misconceptions about it. I've always been passionate about "social justice" and those of us with the 'tisms, and all of the ignorant and intolerant and misinformed attitudes and misconceptions people hold about us, is something I want to take to task and shine a light on, by being honest and upfront about my autism.

I'm not sure how to tell my man friend in a way that he will respect and understand.

He got very insistent and intense when he was telling me (and I'm not one who likes to be told what to do) but I like to "keep the peace" and respect what people request of me, as well, and he is my significant other, so I owe him considerable consideration.

So I'm at a loss for how to deal with this. My first thought is to avoid everyone in my village (which I already do) but when I do see people, I can't seem to be able to omit this information, if it seems at all relevant to divulge.

I am already too disabled to work, from my co-occuring conditions and will be receiving a sizable disability funding package (thank you Australian government!) and I plan to get back into music with help from this NDIS support. I was a vocalist who performed for close to 30 years and I want to learn guitar now all my kids are old enough for me to re-focus on my music, and my target audience will be "neurospicy" people and those who appreciate "autistic culture" and to write songs about being a spectrumite and all the joys and sorrows associated.

My guy friend doesn't know this about me yet, although he does know I used to be "high profile" as a vocal performance artist. He is a shy autist himself and I think he's a bit scared it will blow back on him and us in a negative way, which I'm prepared to risk, but, he is not, evidently

 

[Fino]

Sorry if I missed it, but why does he care?

 

[Neri]

Sorry if I missed it, but why does he care?

He thinks people will judge us badly, I think. He is quite traumatized from a lot of abuse from childhood on, and I think this colours his perception more than he realizes.

 

[Thinx]

Saying the words to people is different from them understanding what the words mean, unfortunately, that is/would be my concern. I don't often think people understand autism enough to get whatever I would like them to hear when I say that word. I don't say it much now, therefore. Mostly people just jump to popular stereotypes and link you to those.

But I'm not a character in a TV soap. Usually. I am myself, same as a neurotypical person is themselves. I do say that I am gay and nonbinary though. Rather than tell others you are autistic, try asking them what they understand by the word and do they know anyone who is?

 

[Neri]

Saying the words to people is different from them understanding what the words mean, unfortunately, that is/would be my concern. I don't often think people understand autism enough to get whatever I would like them to hear when I say that word. I don't say it much now, therefore. Mostly people just jump to popular stereotypes and link you to those.

But I'm not a character in a TV soap. Usually. I am myself, same as a neurotypical person is themselves. I do say that I am gay and nonbinary though. Rather than tell others you are autistic, try asking them what they understand by the word and do they know anyone who is?

And yet, how will this change if some of us don't give an everyday face to the label?

Although I do understand what you, and my guy friend, are concerned about. It just seems to me that I get judged, regardless of whether the word "autism" is used or not. This has been my lifetime experience. Being shunned. Being ignored for my expertise or exploited for it. Being judged negatively when people don't even know me (I think it must be that "uncanny valley" type of thing), so I'm wondering about the pay-off of staying quiet.

But the truth is, I feel very alienated by the judgey people, here (in my place of residence), already, who already shunned and look down at me and so I don't really care what they think, and the sweet people here don't think, or wouldn't, I believe, if they knew, think worse of me because of my 'tism, so it's frustrating to be told who I should and shouldn't tell.

I'm a bright, articulate person AND I'm autistic, and the ideas a lot of people have about autism are uneducated, for the most part, and it frustrates me. I don't want to be someone who hides who I am, and my autism is a core part of who I am. I want people to see our positives; our humanness, our enriching sources of knowledge and unique ways of experiencing the world, even though I am only one autistic person being myself, I don't represent all autistic people.

I guess the answer is to be discerning and to use discretion and wisdom when I feel the urge to "overshare" which is something I struggle with.

One of the reasons I avoid leaving my house and I avoid socialising or trying to work, anymore, in the village I live in, is because I'm not good at "playing the game" and I can't be bothered trying to go incognito as an under the radar autist slash trying to pass as a NT. I just don't see the benefit of it, but, my guy friend wants to start his own business here, as a removalist, maybe he thinks people knowing I'm autistic will impact negativity, for his aspirations, but I don't see it, I really don't. I want to "come out" but, I'm being told I shouldn't do that.

I think people either like me or they don't and the label is a word, that people have no real clue about, because I'm me and I am an everyday person who just happens to be autistic. I have to live fairly quietly because my life has taught me that people aren't safe for me, a lot of the time. I wish it weren't so, but my brain is a very socially scared mixture of Autistic and complex traumatized.

I've suffered for it plenty (my autism) and I enjoy the positives of it plenty, and I can't, I don't want to, spend my life hiding in shame and fear. I've done too much of that already.

So, I will keep quiet if it's not necessary to mention it, but, I'm not going to let anyone tell me how I have to be, to keep them from confronting their own judgement and uncomfortability.

I want positive change for us neuro tismy peeps. I really do. It's something I feel very passionate about.

 

[Outdated]

So, I will keep quiet if it's not necessary to mention it, but, I'm not going to let anyone tell me how I have to be, to keep them from confronting their own judgement and uncomfortability.

This is very much my attitude too. I don't go out of my way to tell people but I certainly don't try to hide anything either. I've been like this since before I knew the word Autism. Most people respect me for who I am. For those that don't and want to make an issue of it I'll go out of my way to make sure they're aware of their own shortcomings.

And some people just have antagonistic natures and like to be domineering, I take great pleasure in pulling them up short.

 

[Hypnalis]

I wrote something (too detailed as usual /lol) about this, but it's fairly close to Outdated's reply, so here's a concise version.:

It's very difficult to help NTs understand ASD. Don't impose that on people. But don't hide it either.

FWIW I have a simple, effective, and time efficient system for this, but it's not teachable.
Knowing it's possible may help you find something that works for you.

 

[Neri]

I wrote something (too detailed as usual /lol) about this, but it's fairly close to Outdated's reply, so here's a concise version.:

It's very difficult to help NTs understand ASD. Don't impose that on people. But don't hide it either.

FWIW I have a simple, effective, and time efficient system for this, but it's not teachable.
Knowing it's possible may help you find something that works for you.

I am seeing the difficulty in explaining anything to people who don't get it.
I keep getting, from well meaning support workers "Everyone is on the spectrum" to which I say "Everyone is on the human spectrum" and some follow up, depending on what seems appropriate.

 

[Mr. Stevens]

So, I'm writing this for advice and suggestions.

I am, kind of, over the moon (very happy-for those who find idioms confusing) about receiving my late diagnosis.

I want to tell everybody I meet that I'm autistic, but my partner thinks it should be kept on the down low and this feels like prevarication to me (I just leant this word this morning, it means to mislead or omit the truth, kind of like obfuscation but more avoidant). He's already told me NOT to tell our next door neighbors and I hadn't the heart to admit that I already told them, and they were fine about it.

I'm the kind of autistic person that wants to educate, advocate and show a face of autism that might challenge some misconceptions about it. I've always been passionate about "social justice" and those of us with the 'tisms, and all of the ignorant and intolerant and misinformed attitudes and misconceptions people hold about us, is something I want to take to task and shine a light on, by being honest and upfront about my autism.

I'm not sure how to tell my man friend in a way that he will respect and understand.

He got very insistent and intense when he was telling me (and I'm not one who likes to be told what to do) but I like to "keep the peace" and respect what people request of me, as well, and he is my significant other, so I owe him considerable consideration.

So I'm at a loss for how to deal with this. My first thought is to avoid everyone in my village (which I already do) but when I do see people, I can't seem to be able to omit this information, if it seems at all relevant to divulge.

I am already too disabled to work, from my co-occuring conditions and will be receiving a sizable disability funding package (thank you Australian government!) and I plan to get back into music with help from this NDIS support. I was a vocalist who performed for close to 30 years and I want to learn guitar now all my kids are old enough for me to re-focus on my music, and my target audience will be "neurospicy" people and those who appreciate "autistic culture" and to write songs about being a spectrumite and all the joys and sorrows associated.

My guy friend doesn't know this about me yet, although he does know I used to be "high profile" as a vocal performance artist. He is a shy autist himself and I think he's a bit scared it will blow back on him and us in a negative way, which I'm prepared to risk, but, he is not, evidently

I can get his concerns, though I understand your frustration too. Sadly, most people probably won't have a clue what Autism means. You might make a greater impact through your music. But, only you two can reconcile this issue for yourselves.

 

[Hypnalis]

I am seeing the difficulty in explaining anything to people who don't get it.

This is a very useful insight, which can be applied in many different contexts.

For me it was the first step to finding a good way to explain the appropriate part(s) of my ASD nature where it's necessary (or just useful to me).

For context: it's usually for small things like managing expectations with colleagues and customers, where I need to explain my functional weaknesses. For example I'm terrible at admin tasks, which nobody expects because my technical skills suggest otherwise.

So it's important to achieve clarity, but it's much more practical to take a couple of minutes to present it as a foible than it is to try (and OFC fail) to teach them about ASD & its common "comorbidities", and make them figure it out for themselves

 

[tazz]

I am in two minds about it.

If autistic people are so diverse then what use is it to label it anyway. Like if someone asks where are you from and I say planet Earth, it's true but doesn't say anything useful about me. I kinda feel the same with "autistic". I don't share the same values or lifestyle as everyone who is autistic. I share some experiences and I find it useful and supportive to discuss them on forums like this. But is autism is an identity? I'm not sure I feel that way.

If we're trying to bust the myths and stereotypes, I can sorta see the benefit in announcing that you're autistic. I think there's good precedent for this... Homosexuality for example. The more people who come out, the more difficult it is for everyone else to cling to stereotypes and exploit or sideline us. But let's not kid ourselves that this doesn't come with risk. No one should be forced to go to the front line of this particular battle. Which is where you run into your personal dilemma with your man friend. You seem up for action in the trenches (and I'd happily stand shoulder to shoulder with you) but he's not.

In the end, both in terms of my sexuality and neurodiversity, at the moment I'm using the approach that the labels are useless for the general public and day to day interactions. If I'm having a deeper conversation with someone, no problem, I'll use terms like autistic or bisexual and we have the opportunity to explore what that means as the conversation moves on. But otherwise the problem is that YOU say the word, and THEY apply the definition. I'm feckin sick of all the assumptions people make about each other. So I think screw 'em. I'm not playing that game. I'm not using the label because it'll be interpreted using THEIR definition.

Full disclosure... I'm a jaded old fart.

 

[Neonatal RRT]

So, I'm writing this for advice and suggestions.

I am, kind of, over the moon (very happy-for those who find idioms confusing) about receiving my late diagnosis.

I want to tell everybody I meet that I'm autistic, but my partner thinks it should be kept on the down low and this feels like prevarication to me (I just leant this word this morning, it means to mislead or omit the truth, kind of like obfuscation but more avoidant). He's already told me NOT to tell our next door neighbors and I hadn't the heart to admit that I already told them, and they were fine about it.

I'm the kind of autistic person that wants to educate, advocate and show a face of autism that might challenge some misconceptions about it. I've always been passionate about "social justice" and those of us with the 'tisms, and all of the ignorant and intolerant and misinformed attitudes and misconceptions people hold about us, is something I want to take to task and shine a light on, by being honest and upfront about my autism.

I'm not sure how to tell my man friend in a way that he will respect and understand.

He got very insistent and intense when he was telling me (and I'm not one who likes to be told what to do) but I like to "keep the peace" and respect what people request of me, as well, and he is my significant other, so I owe him considerable consideration.

So I'm at a loss for how to deal with this. My first thought is to avoid everyone in my village (which I already do) but when I do see people, I can't seem to be able to omit this information, if it seems at all relevant to divulge.

I am already too disabled to work, from my co-occuring conditions and will be receiving a sizable disability funding package (thank you Australian government!) and I plan to get back into music with help from this NDIS support. I was a vocalist who performed for close to 30 years and I want to learn guitar now all my kids are old enough for me to re-focus on my music, and my target audience will be "neurospicy" people and those who appreciate "autistic culture" and to write songs about being a spectrumite and all the joys and sorrows associated.

My guy friend doesn't know this about me yet, although he does know I used to be "high profile" as a vocal performance artist. He is a shy autist himself and I think he's a bit scared it will blow back on him and us in a negative way, which I'm prepared to risk, but, he is not, evidently

I like to say that I am "openly autistic", the caveat though is that the people who know I am autistic, need to know. This would include my close co-workers, my students, and my close family members. Other than that, it's not going to be relevant when interacting with me. Personally, it is important to me to not have false "moral diagnosis" of me, that there be no false misinterpretations nor judgements made of me, that whatever they are sensing is within the proper context and perspective. When the people closest to me interact with me, they need to know they are dealing with an autistic person and not something else.

Now having said that, I don't expect them to have any understanding of what autism is, but when the topic is brought up, I will quickly and concisely run down a few things that need to be known when we are communicating and socializing. Most people don't know about autism, don't know what to say, or how to respond, so just get to the highlights and move on with whatever you were doing with them. Don't make it uncomfortable for them. Furthermore, most people don't care. My co-workers only care that I can do my job well. People can be a bit selfish and get upset if you are expecting some sort of special treatment or accommodations that involve them picking up your slack. Can you do your job well? Fine. Autism or not, they don't care.

 

[wards]

I have only told a few online acquaintances who have autistic people in their family so can relate and also my immediate family.

My neighbours have autistic kids but I haven’t had told them I am autistic yet, I don’t really like socialising so don’t think I will ever get the chance to tell others.

 

[Thinx]

I think there is gradual improvement in understanding of autism, for sure, as there is for dyslexia for example, and ADHD. But still, with autism in particular there is a history of associations that is slow to untangle and dissipate. The stereotype of autism is more similar to narcissistic behaviour I think, for example, Sheldon Cooper. But narcissism is more an effect of certain crucial lacks in the early parenting of the child, as is attachment insecurity, whether the child is autie or NT.

Autism and other types of neuro diversity just makes one somewhat different, and not neurotypical.

I experience a slight processing delay, I tend to be simple and direct, value driven, hardworking, I have tended to get promoted at work, and to have some talents, like original thinking and problem solving. I am socially inept, no amount of work on my defects in that area has changed that, I just can't do unstructured social interaction. We are differently wired. And we are all different.

 

[Neri]

Yeah, I feel less like telling people just talking about it here. I don't generally talk to my neighbors or people in my village much. I have spent years in my house and elsewhere (last year I went to Tasmania because my mother and sis were there) and this year I attempted, or rather, I did go, to a festival with my oldest son (which burnt me out real bad, but I loved it, nonetheless, for the most part!).
Thank you to everyone that gave me feedback, it's helping me process. I'm just like a little kid with news I want to tell anyone and everyone about but that's half the problem isn't it? Being a grown up child is pretty weird for most people.
But seriously, I am changing my life pretty dramatically post diagnosis because here in Australia I can actually get good help so I don't have to hide in my house. A few years ago I went through very severe burn out after studying, trying various day jobs, raising a very large family, doing various volunteer things and it all just got to be too much. When lockdown started it was already a "welcome to MY world situation" but I still tried to study online, and got COVID instead and could do very little.

So my outside life now consists of support workers helping me do things and a brand new (new for me) peer group (full of ND people with various comorbs, some of which run the group and they are called "Peer Support Workers" . We are doing various artistic or craft projects in the group. I am finishing off a hoodie, I knitted, and am now embroidering, for my 2 yr old grand daughter.
I still have various care commitments to my now adult children, the youngest being just 18 and he's "neuro spicy" too with a bunch of debilitating comorbs that he needs support around. Thank God I am autistic! Because I'm a much better mother to my son than if I wasn't!

I have told most, but not all, of my children, about my recent diagnosis.

 

[Neri]

I am in two minds about it.

If autistic people are so diverse then what use is it to label it anyway. Like if someone asks where are you from and I say planet Earth, it's true but doesn't say anything useful about me. I kinda feel the same with "autistic". I don't share the same values or lifestyle as everyone who is autistic. I share some experiences and I find it useful and supportive to discuss them on forums like this. But is autism is an identity? I'm not sure I feel that way.

If we're trying to bust the myths and stereotypes, I can sorta see the benefit in announcing that you're autistic. I think there's good precedent for this... Homosexuality for example. The more people who come out, the more difficult it is for everyone else to cling to stereotypes and exploit or sideline us. But let's not kid ourselves that this doesn't come with risk. No one should be forced to go to the front line of this particular battle. Which is where you run into your personal dilemma with your man friend. You seem up for action in the trenches (and I'd happily stand shoulder to shoulder with you) but he's not.

In the end, both in terms of my sexuality and neurodiversity, at the moment I'm using the approach that the labels are useless for the general public and day to day interactions. If I'm having a deeper conversation with someone, no problem, I'll use terms like autistic or bisexual and we have the opportunity to explore what that means as the conversation moves on. But otherwise the problem is that YOU say the word, and THEY apply the definition. I'm feckin sick of all the assumptions people make about each other. So I think screw 'em. I'm not playing that game. I'm not using the label because it'll be interpreted using THEIR definition.

Full disclosure... I'm a jaded old fart.

This sounds to me like a really balanced, well thought out argument. It's probably along these that my guy friend sees things. Really helpful. Thanks

 

[Aspychata]

You have given this a lot of thought. I guess it gets down to really how open-minded your community truly is. Some places, l would never discuss it, other places, it would be more accepted. If your partner is starting a business, so maybe it would be thoughtful to wait until he has been in business for at least a year? Then you have a comprise and keep the peace with him.

 

[Neri]

You have given this a lot of thought. I guess it gets down to really how open-minded your community truly is. Some places, l would never discuss it, other places, it would be more accepted. If your partner is starting a business, so maybe it would be thoughtful to wait until he has been in business for at least a year? Then you have a comprise and keep the peace with him.

My community is full of "alt" type people, most of them with a drug (mostly weed) focus, many of them likely undiagnosed ND peeps themselves. We are so "Cannabis Conscious" that we have a festival called "Mardi Grass" that celebrates, advocates and highlights all things Cannabis. I haven't participated in many years, but I used to perform at these events. A caveat; I never intended to live in this community, I never desired to live in this community, it just turned out that way. I used to be "high profile" here, as a frequent singer on stage, but that was before a major breakdown/burn out caused by having 7 children with a narcissistic illegal drug focused person (namely Cannnabis) and having many neurodivergent children.
I don't find my community particularly inclusive or of the give a damn variety for the most part, but there are exceptions to that rule.
I'd say we fall under the "high crime" communities, for the most part, but thankfully not huge amounts of violence, mainly just illegal substance trade, which attracts certain kinds of people. Having the publicity of how "medicinal" cannabis is a thing has changed, to a certain degree the sorts of people that move here, but not much. In general, it is "hippies" and other non conformist low socio economic people.
I was raised by a "hippy" and can't help a certain degree of that, but seeing as I had a pretty awful time growing up, I'm not the type of person to glorify the sub culture in any other than the ways that make sense to being a decent and reasonably intelligent human.

I don't know if I can wait for him to start his business. The main thing that I have going for me in this regard is that I tend to spend most of my out-of-the-house time in the next "city" (country town that calls itself a city, but, this is Australia), so I'm usually either at home or elsewhere. I will be having support workers supporting me from around here, though, when my funding kicks in, early in the new year, I expect.

 

[Fino]

Considering his previous trauma, I think it would be best to work closely with him on continuing in a way that takes into account both of your perspectives. I'm thinking that basically he understands your desires and needs and allows you to be more open about it, but you also understand his desires and needs and do so at a pace and quality that is comfortable for him.

 

[Ken]

I think he's a bit scared it will blow back on him and us in a negative way, which I'm prepared to risk, but, he is not, evidently

Revealing my autism sometimes goes well, but typically it doesn't. That is because almost no one has any clue what autism is and telling them is almost always negative. Most people think autism is mental illness; that autism means "crazy" or "not right in the mind" or "retarded", for some it makes them fearful etc.

I think it is great to educate people and I applaud you in that quest. But during casual visits, there is usually not enough time and the education gets cut off, leaving them with their original misperceptions. The problem with that is that now their misperceptions include you.

I guess I would say that I have experienced both sides. When I was diagnosed, I wanted to tell everyone, but I since learned that time and place is very important in that quest. There have been a small percentage of people that I revealed to that went very positive. So, it goes both ways. The key is to recognize when the condition is right for it to go positive.