Discussing my diagnosis with autistic relation

[tazz]

During the holidays I will attend some family gatherings. I have a relative who is autistic and they will be there. They were diagnosed in childhood. The diagnosis at the time was high functioning, but actually they do have some developmental delay. They're about 20 but I would estimate in social skills they're about 14. They have the usual spikey profile - on some topics they can talk quite sensibly and sometimes even insightfully.

This is the first time I'll be spending any significant time with this person since my own diagnosis earlier this year. I don't feel the need to specifically tell them that I've been diagnosed. But this is exactly the sort of situation in which I will spend some time having conversations with this person - because very often I find that they're the only member of the family who talks any sense! So I'm sure the topic of autism will come up, and I'd be deliberately hiding my diagnosis if I didn't mention it to them.

So I just think there's a good chance the opportunity will arise and I will tell this relative that I've been diagnosed. I'm a bit apprehensive about their reaction mainly because of the way other people have reacted. I told some friends and they responded variously with i) no you're not; ii) I don't think so, prove it; iii) everyone seems to be getting diagnosed with ADHD or something these days.

My hope is that this relative will be relieved that finally someone else in the family has been diagnosed and understands something about what they're going through. I don't think they have any other autistic friends.

My fear is that they will see me as an imposter because I don't have an obvious developmental delay and therefore don't have the same difficulties to cope with. Or for some other unexpected reason they will react negatively. This doesn't feel like a reason to hide it, I'm just apprehensive.

I'll update this thread after the holidays and write about how it went.

 

[Mr_F_]

My hope is that this relative will be relieved that finally someone else in the family has been diagnosed and understands something about what they're going through. I don't think they have any other autistic friends.

My fear is that they will see me as an imposter because I don't have an obvious developmental delay and therefore don't have the same difficulties to cope with. Or for some other unexpected reason they will react negatively. This doesn't feel like a reason to hide it, I'm just apprehensive.

When I started reading your post my first thought was "I bet the family member welcomes the news and responds positively". I can however appreciate why you fear the negative response, but isn't that a natural reaction related to this autism malarky anyway?

You have nothing to lose, and all to gain so I say go for it! Good luck and look forward to hearing how it goes on this thread.

 

[Neonatal RRT]

So I just think there's a good chance the opportunity will arise and I will tell this relative that I've been diagnosed. I'm a bit apprehensive about their reaction mainly because of the way other people have reacted. I told some friends and they responded variously with i) no you're not; ii) I don't think so, prove it; iii) everyone seems to be getting diagnosed with ADHD or something these days.

My hope is that this relative will be relieved that finally someone else in the family has been diagnosed and understands something about what they're going through. I don't think they have any other autistic friends.

My fear is that they will see me as an imposter because I don't have an obvious developmental delay and therefore don't have the same difficulties to cope with. Or for some other unexpected reason they will react negatively. This doesn't feel like a reason to hide it, I'm just apprehensive.

I'll update this thread after the holidays and write about how it went.

Do you have your paperwork from your doctor with the diagnosis? I would think a quiet, one-on-one conversation in the corner of a room, you could discretely show them.

 

[tazz]

Do you have your paperwork from your doctor with the diagnosis? I would think a quiet, one-on-one conversation in the corner of a room, you could discretely show them.

Yeah I have a detailed report from the psychiatrist. I did wonder about whether to take that with me - they might find it interesting and it makes the whole thing more concrete. Historically I've masked a lot more than they do so it might seem quite alien to them that I look so "normal" by comparison. But the report sets out quite well the ways in which autism affects me and all the things I do to work around and hide my differences.

I don't have a problem with the rest of the family knowing I've been diagnosed. So far I've only told immediate family who I see on a daily basis but that's only because I don't care what the rest of the family thinks about it and I don't mix with them so they didn't need to know. So it wouldn't bother me at all to have a chat with this person in a corner like you say, and for others to overhear. If they ask "what was that about" I can just say "secret autism stuff, you don't have clearance" - joking - I can just say I've been diagnosed and they'll probably shrug their shoulders and not know what to do with that information anyway.

 

[Jumpinbare]

I wondered how my mother would react (she's 88 now). She couldn't imagine how I could be autistic, but when I pointed out my major symptoms, she acknowledged them. She just didn't know they were autistic. She only knew about Kanner's autism, and we actually have an institutionalized ASD3 cousin. She was totally unaware of high functioning autism or Asperger's. When I was growing up, Asperger's was unheard of in the US, so neither she or my school teachers would have known what to look for even though my childhood was pretty much textbook AS.
The take away was that she was surprised, but not alarmed or upset. After all, I had come out ok in her eyes.

 

[vergil96]

You can take a picture with your phone in order not to carry a file of important documents with you

 

[Tom]

I would probably share the info if I already had some sort of relationship with them. Then it would be natural 'Hey guess what?' sort of thing. But if it was a relative I never really spoke to or knew I would probably not.

 

[Judge]

An interesting scenario. Looking forward to a post explaining how it went.

Perhaps one of the few in which we don't keep our autism on a "need-to-know" basis. Good luck.

 

[tazz]

I had to laugh, at myself. I was a bit concerned how the conversation would go, as I mentioned. But I went ahead and did it this evening. They just said "Oh, cool".

So I attempted to elicit some further response. I explained about the group sessions I'd been attending. They said they might have benefited from that sort of thing when they were younger and that maybe autism is becoming more accepted these days.

I explained that further sessions were planned for the new year and showed a list. They weren't really interested, and didn't respond when I said they could probably attend.

And then they went back to fiddling about on their phone.

I figured no point pushing it any further. Now they know, maybe it'll come up in conversation another time. But for now... it was kinda a non-event in the end.

 

[tazz]

Umm... well that took a surprising turn... for the worse...

Yesterday I spent more time with my autistic relation and extended family.

I think my relation is quite traumatised by their experiences during school years. And they have massive problems with self-esteem. They frequently referred to themselves as "retarded" and during a discussion about another family member who was leaving education and getting a job, the autistic person mentioned that there was no way they could work because they are not capable - there didn't seem to be any understanding that they might have strengths as well as difficulties. During this discussion they mentioned a few times how there's no point to their life and they feel suicidal. It was mentioned in a very casual way and no-one in the room seemed to have any idea how to respond so some feeble comments were made about not being so hard on yourself and then the discussion moved on.

Also, this person's immediate family don't seem to be very accepting of autism at all. At one point, someone who is not autistic was openly mocked for wearing "autism headphones". I believe the person doing it thought it was just humorous banter, but there was myself and this other autistic relation in the room at the time. At another time both myself and my autistic relation were told that we were "cowards" because we didn't want to take part in a game that involved standing up in front of everyone to do some silly performances. I'm sure the game is good fun but just not for us.

Overall, I was quite surprised and upset by the whole experience. Somewhat angry too. I didn't know how best to handle it at the time so I didn't react - honestly it felt so bad that I went immediately to thinking "what's the use in saying anything, these people are a lost cause already".

 

[VictorR]

I'm sorry to hear.

Some we can connect with right away, some it takes time, and there are some where a connection might not be possible.

It's best to recognize the latter, as you have, and to spend more time trying to connect with the former.