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How did your family handle it when they found out you were on the spectrum?

music.forlife7

Well-Known Member
My family had a surprised reaction. When I was in preschool in 1998, my teacher noticed that I wanted to read books over playing physical games with my classmates. My parents had never even heard of any autism spectrum disorders back then, so they just concluded that I was going through some type of phase. Fast forward to 2008, and we finally discovered I had it. Both my family and my friends try to be patient with me through this, and even if I am starting to overcome different things a little late, it's better late than never. My best friend doesn't have autism but she has Schizophrenia and we immediately got along because we found out that we can offer each other helpful advice on most hard subjects in life and how to deal with them. While she's not exactly close she is great to be around when I see her.
 
For years my family always knew I was different. I am also legally blind and have been since birth. So I have always struggled in that aspect. But I was not formally diagnosed with AS until much much later in life as at the time I was in high school AS was still considered a boys disorder it was still very new to the world. I am now 30yrs old and was diagnosed few years back by my internship for my degree. My family handled it well because they had already been dealing with my behaviors for so long it just makes much more sense now. They have a name for what I was doing long ago. The only people in my life that don't really handle it well are new friends.
 
My parents don't really understand it that much, so they take it lightly. They know I have issues with stuff that a lot of people might not have. But then again; I've been seeing therapists and all for almost 25 years now (on and off), so they can guess there's something wrong with me to say the least.

I told my mom before I got an official that I suspect what might be my "problem", and I also explained that it's not something you can take meds for.

My parents don't treat me differently, to them I'm still the same person. Having a diagnosis doesn't change me.

I should perhaps add in that my mom had training in the childpsychology field (and has some kind of diploma thing for it), so that probably makes her somewhat more understanding about people with "mental issues" (to put it really bluntly).

As for friends; since you mentioned them Music.forlife7, my entire social group are aspies (or borderline on the spectrum), so none of them are "stop acting weird and just fit in".
 
My story is similar to Arashi's my family always knew I was different, particularly my mum but she always told me it was okay to be different that it was a good thing etc so for a very very long time I didn't realise there was anything more to it I was just me..weird old me.

When I first told my mum I suspected AS (around this time last year) she was upset, she blamed herself for not getting me help sooner, particularly because teachers had told her something was not right with me. After that she was very accepting and started seeing all the various traits I and my daughter display as well as my dad, we both agree he's probably on the spectrum too.

My dad had a very different reaction, initially he thought all my problems were down to him and my mum divorcing when I was 8 and he told me some really shocking things that went on that he thought my mum had possibly poisoned my mind with...i.e when he tried to strangle her (the way he explained this was so messed up I was speechless, "I just fell on her" "I don't know how my hands got around her throat" "restraining order" are some of the things that stick with me). He wanted to come and visit us to "talk" I politely declined the offer and stated it was not something I got from them getting divorced or anything my mum had/hadn't told me it was something I was born with. He got off the phone soon after and I sent him an email explaining it all with lots of links etc, he never spoke about it again and never brought any of the weird stuff up he confessed to.

I publicly announced my diagnosis on facebook a few months back, two of my aunts responded saying they always knew there was something different about me but they had no idea. Most people either didn't read it or didn't feel the need to respond so I'm not sure how any of the others feel about it.

I don't have any friends so no reaction from that front :bounce:
 
Growing up I was the "normal" one, my brother and sister were diagnosed as adhd and grew up in special ed, I was told that I had an active imagination. But other than me being smart, having more common sense than the other kids around me, I was thought to be "normal." But as I got older I felt more and more self consious. The first time I remember feeling real anxiety and may have indicated something was different about me was in the first grade, when I got in trouble for something at school, was told to stand in the corner, except I didn't realize that I was in trouble, I assumed I was told to stand in the corner because we were going to play hide and seek, I started counting, but then realized i didn't hear anyone moving. Thank goodness I didn't count out loud. But then I felt very embarrassed and couldn't figure out what i had done wrong, (I had commented on how good the air felt when the window had been opened and had forgotten that we were supposed to be quiet). And sometimes I would say or do something that turned out be rather embarrassing, like shoving my shoe in people's face to prove that I my feet were indeed larger than average, I think I was trying to make conversation or something. But school started to feel harder, making and keeping friends was harder, it got to where I really just wanted to be invisible. I remember my mother telling a woman that I wasn't interested in the boys because I was much more mature than they were. I liked that theory better, than what I really thought, or what other kids said, so I let her think that. I had a ton of crushes on boys but had no confidence. My parents were rather inconsistant in their parenting and the rules were confusing. My father would get really angry and I was always waiting for him to fly off the handle. I was always terrified. My parents weren't real affectionate, my dad was always telling us how much he hated kids, that he found us in a dumpster under a pizza box, that i sounded like a dying cat when i sang, and how much of an inconvenience we were to him.

Now when it was suggest I might have it, my grandma said hmm as... what? hmm I have never heard of that. Except she has heard of it many times, because my brother has it, and when I call my grandma now and mention it she says the same thing again. My brother thinks my dad might have asperger's and I am starting to think he might as well. I think my sister has it too. I just bought aspergirls to be sent to her for her to see if it feels right. This family that we grew up with, while I think they support my brother with it, cause I think they always thought he was different anyway. And I am sure how they feel about me having it, but they don't think my sister has it, the youngest of the family says my sister doesn't have it because "she isn't selfish and people with asperger's are selfish" That really hurt because he was the one I had felt closest to when I moved away from there about 6 years ago. I am bothered by the ignorance, but also that he thinks that my brother is selfish (which he isn't) and I don't know if he thinks I have it or not, but if he thinks I do I guess he thinks that i must be selfish as well.) My grandma had been saying that I was selfish and not sentimental.
 
I've been reluctant to share my diagnosis with family members. One of my sons understands because he's probably on the spectrum, too. But I talked about it with one of my sisters (I come from a very large family), and she reacted with some skepticism, which, from what I've read, is fairly typical of people who have known you for a long time. They have a very limited understanding of how AS presents itself, and if you've been able to "act normal" for much of your life, they think you must be making it up (to gain attention?). I tell my sister that she doesn't have my brain, so she can't possibly know what it's like.
 
My mum always knew there was something, I have medical records that show this. I think for mum it was a relief when she found out because it gave a name to why my dad and brother are the way they are. I had known on one level for a long time and I had discussed this with family before.

I was hoping on some level the diagnosis would help, I guess, the world to understand me. Unfortunately I don't think that will happen ever. And I still struggle with the world.
 
I was hoping on some level the diagnosis would help, I guess, the world to understand me. Unfortunately I don't think that will happen ever. And I still struggle with the world.

Same here! Nothing really changed after I was diagnosed, I still struggle but now I don't have such an immense feeling of guilt/embarrassment after having a meltdown, I don't hide my stims publicly anymore. My husband understands more but he was great about my little quirks anyway, the only one he used to get annoyed about were the meltdowns, so when I was raging and screaming and hitting myself or other things he would be shouting at me to calm down and to stop it etc wheras now he knows to just let me ride it out, he also recognizes more now when I'm about to blow and gets me out of the situation. There would be the rare time when he would moan about me not going to school with him to pick our daughter up but after my diagnosis he read a bit about AS and totally understood why it freaked me out so much and he asks me if I want to go now and if I say no he leaves it at that.

My mother in law was very understanding and initially she was a bit annoying constantly asking me if I was okay, for example we always go to the supermarket on a Saturday afternoon, she suddenly started saying "do you want to go? because I'll understand if you don't" I'd say I was okay going and driving there she'd ask me again if I wanted to go because she didn't mind turning back. Then around the supermarket "are you sure you're okay? because we can just leave the shopping and walk out and go back home". It was sweet at first but then it got annoying and I had to get my husband to tell her to ease off a bit, that in general I'm fine but it's obvious when I'm having a bad day/not coping.

Support wise I was not offered anything it was just a case of yep you have AS, here's your report goodbye. There isn't anything in my area either, there are Aspie meetups but they are in the major cities and I can't get to them because I can't drive plus it's at night, I don't want to meetup with a load of strangers at 8pm that's not safe. There's autscape but again staying overnight with a load of strangers, don't think I could do that.
 
I have only told 2 family members; my brother, and he was all ok and we went on with life, and my aunt, who is a neuropsychologist, and she could not believe it. But I am perfect in her eyes, so she does not see anything wrong with me :)
I do not want to tell my mom, I am afraid it would hurt her....
My dad is dead and my other brother has his own problems to deal with (ADHD, PTSD, undiagnosed HFA, among other things).
I do not talk to most of the rest of my family
 
I know what you mean kelly!! People don't understand it so they still expect you to be normal.

My parents in law have held it against me that I'm a bit different and weird. They are getting better.

I still have a lot of guilt for past actions but I'm slowly learning to let go. I can explain things better to my family now and they can go and get information about the condition to help them help me. If they want too. But I find the general public is pretty ignorant and even if you tell them they will still judge you. They still want you to interact normally in social situations and when you can't even understand those situations it makes it harder.
 
I've been officialy diagnosed with Asperger's twice and both times my parents initially denied it as "doctors babble and touchy-feely pansy talk".

After a few years of my talking to them they eventually realized that most psychological conditions are fact and that I really have Asperger's, my mother is now very supportive and my father was extremely supportive until he died a year ago.
 
They didn't handle it. They still don't know anything about it, just that I've got a big fat diagnosis that I occasionally use as an excuse.
 
Fortunately I didn't find out until I was an adult, so I've had the choice of who I want to share that little bit of information with.My family doesn't know. My extended family seems content to think of me as the strange black sheep. My dad has many of the same spectrum traits I do, but he's too old and established to even entertain the idea of something being "wrong". To him, he is who he is and no one's gonna tell him differently. I don't know how my mom would react. Either brush me off as being silly or think she's a terrible mom. She's quite dramatic.

So far it's only my husband, the leadership team at my office, and my local Aspies group that know about it. I haven't decided whether to tell anyone else, ever.
 
I don't have an official diagnosis, I only suspect I may have AS. I've talked to my husband about it a little, but no one else. I'm not quite sure what he thinks about it. I think the fact that I've learned how to fake my way through quite a few social interactions makes it more difficult for him to believe. He's mentioned that maybe I only want to have something wrong with me to explain why I'm different. But couldn't that be the case if I actually do have it? I don't think it's really obvious with me, I don't really do any stims that would attract attention, and I rarely have meltdowns, but I do have panic attacks occasionally. I don't know if I should tell anyone else or not. I'm afraid everyone will think I'm making it up.
 
Katherine, I think what you're experiencing is not uncommon, especially among women on the spectrum, who, in general, possess a greater ability to pass themselves off as neurotypical. In reply to anyone who doubts or challenges my own diagnosis, I simply say, "You don't have my brain." Only I know what goes on inside my own head. Don't feel like you owe it to anyone to fit their perception of what Asperger's is "supposed" to look like. Continue to learn about it and decide for yourself to what extent that knowledge and understanding can help you.
I don't have an official diagnosis, I only suspect I may have AS. I've talked to my husband about it a little, but no one else. I'm not quite sure what he thinks about it. I think the fact that I've learned how to fake my way through quite a few social interactions makes it more difficult for him to believe. He's mentioned that maybe I only want to have something wrong with me to explain why I'm different. But couldn't that be the case if I actually do have it? I don't think it's really obvious with me, I don't really do any stims that would attract attention, and I rarely have meltdowns, but I do have panic attacks occasionally. I don't know if I should tell anyone else or not. I'm afraid everyone will think I'm making it up.
 
I'm not sure if my family really believes me.

My brother thought it was interesting, but beyond that he didn't really say much. After bringing it up with my mother, she immediately jumped to explaining about a man who lives in her rehab facility who has AS who was nothing like me.

I actually just worked up the nerve to tell my dad yesterday. He's the family member I'm closest to, so it was the hardest to tell him. He kind of just laughed it off like I was joking, but I suspect that I get it from him and he might know that. I am like him in so many ways and we both tend to avoid serious/emotional conversations too.
 
My mother has always known there is something "different" about me. Ever since I was a young child she has brought me to various doctors, speech therapists, neurologists, pychologists... and I've been diagnosed and misdiagnosed with various things. In the end, for me at least, a diagnosis would make no difference. I am this way, and the people who love me deal with me the best they can. Sometimes they want me to do or "be" more than I am able, and I simply remind them of my limitations. If they get upset... so be it. I have to take care of myself so I can be there for my daughter. I don't talk to my family or friends about any of my health issues. I think it very personal. They can make up the theory of their choice if they want. It makes no difference to me what they think or speculate. I would answer questions if they asked, but they don't ask. So I let that go... I just focus on taking care of myself and my family.
 
I was suspected of having AS since the age of 4, but it wasn't until I was 9 that I actually got diagnosed. Even when I was a toddler, my mum always thought there was something "up" with me, but my dad and his parents wouldn't hear anything of it. By the time I got diagnosed though my dad had done his homework, and a while ago he told me that it wouldn't surprise him if he was on the spectrum himself. As for his parents (his mum especially), I don't think they ever accepted it, but I've always found them quite closed-minded. My parents have always been very supportive of me though.
 
They're still digesting it, but not making a big deal of it, because we're not a clan of big-deal-makers. Well, except me.

They've known something is wrong for four full decades, so it's just been a matter of definition.
 
My mom was not at all surprised by the diagnosis, but I think my dad's still trying to process it all in order to understand what Asperger's is. They're both supportive, though, which is a relief to me.
 

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