What to Expect After Telling Parents about Diagnosis?

[InPrincipio]

Being diagnosed at age 49 (although self-diagnosed about 4 years ago) has been difficult without any familial support. Basically, they don't know. They weren't able to recognize my differences when I was younger, except that I was just different, but they were different themselves too (I can see that from my vantage point as a teen and now).

Before my brother told us that his youngest son was diagnosed, none of us knew anything about it. I remembered some of his infant behaviours and the difficulties to settle him, but I had seen that before with some other kids. I didn't realize there was more to it and that he had taken to wandering at school. Later on, there was more reference to him having Asperger's - maybe an update to his diagnosis.

Anyway, my family is very fragmented and no one really knows much about the other, but I've been the most observant for some reason. I asked my dad last year about whether they ever say much about their son and the Asperger's. He said they told him he grew out of it! (And I'm sitting there silently thinking "what??!!") Then, my dad said he had wondered at one time if he had Asperger's but then he said that it didn't seem right, so he didn't think he did. He blames his difficulties on the few instances when he fell on his head as a kid. I think that if my mom were still alive, she would be most accepting without judging.

Perhaps the greatest difficulty is that they don't know much about it, and probably won't believe they need to learn anything or about the updates in research on the subject. If I had asked my mom anything in particular, she may have been more in tune with my differences to answer (since my dad was absent emotionally), but my grandmother looked after me in my pre-school years while Mom was at work, and my grandma didn't know anything about Asperger's.

So, I don't know how to talk to any of them about this. I don't know if any of them need to know anyway, but when they find out I am off work for anxiety/depression, they might ask questions. I hate being an overly honest person sometimes, and having to prepare myself to lie to avoid discomfort (mostly mine but also theirs). My dad ALWAYS asks me about work. People talk.

In addition, I'm not sure what to do in this regard with the in-laws either. I love my parents-in-law, but they also don't know anything about ASD, and my mother in-law likes to talk, so it will come out. She can't help it. [I'm an incredibly private person, obviously!]

Did any of you have a good experience when informing your parents, etc.? Would you be willing to offer some wisdom, either from your approach, or even just from hindsight? I would really appreciate it!

 

[OkRad]

That is a hard situation. For me, they know something is the matter. I get eye rolls at times. Extended family is hard. I have a good family, very kind. But you know, once you are labeled, it sticks.

 

[Mia]

I would never tell my biological family, and both my parents are essentially gone now. Most people don't understand autism or high functioning asperger's except those with it, and those in the medical profession who specialize. Most ordinary people would conjure up images of rain man and serial killers, if they are influenced by the media at all.

Very few people I know would do the research in order to comprehend the difficulties or the advantages of a spectrum disorder. Only those it seems who actually are looking for answers to the problems they have would spend the time, in research and understanding.

I originally came to the site after my husband was diagnosed, although I had known he was on the spectrum for years. And I know that one of my younger sibling's is as well. My husband is still in denial, although I think he suspects more than he says. I've found that I'm also on the spectrum as well.

The reasoning behind not telling is that it would likely further their terrible opinion of me in the first place, there would be lots of tongue-wagging and shunning and gossip. I don't give them much information about myself, as they have been of the opinion that I'm odd since I was a child so I would rather not fuel the fire. Yet many of my siblings have autistic traits. And the knowledge that I have of autism would be helpful for them to know. They are not people who view difference as anything but something that needs to be overcome.

Personally, my view is that a diagnosis, of this sort is on a 'need to know' basis only. For medical professionals and people in the immediate family. As most simply do not understand the complexities of this, in my province it's still listed as a 'mental illness.'

Unfortunately, Dad's like to ask 'How's the job?' and it would be tough to tell him as he likely wouldn't understand. I know my own Father wouldn't have, he would be worried, and would in some way try to fix it. Perhaps you could simply say that you are on stress leave, which has lately become something of a catch word in the media. That work was becoming too stressful, and you took some time off. People will be concerned, but there's little you can do to remedy what they might think.

 

[Rasendra]

My dad is pretty accepting but often too busy with other things or younger brothers to have much to say on it or whatever. My mom read over the asperger list with me early on when I was researching and said she wished she had known about that growing up however it seems within a day she had forgotten about it. She hasn't been super supportive about mental health stuff in the past either so I didn't want to push it again. She just thinks I am being difficult or whatever instead of understanding that I have autism. It makes interactions a bit stressful so I don't visit much. Beyond that I haven't told anyone other than husband who is supportive so at least I have that as I know some don't.