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SpatzieLover's avatar

How would you handle telling family and friends about your diagnosis or your child's diagnosis?

Asked by SpatzieLover (24554points) April 4th, 2011

I have shared with the collection that my husband and my son have Asperger’s syndrome.

We are going to discuss this with our psychologist in detail at our next appt…unil then, I thought the collection might help shed some light :)

My son was officially diagnosed in autumn, my husband just about a month ago. We have shared our son’s diagnosis info with many family members. We have yet to go into specific details, but they have the gist of what our daily life with him and his therapy entails.

We have not shared my husband’s diagnosis with anyone. other than my mother

We are concerned with how his family will handle it. They are rather rigid thinkers. They do not share medical information, and are the type of family that thinks kids “outgrow” neurological conditions.

I’ve have tried to prepare my husband. I feel that his parents first reaction will be negative and reactionary. We plan to have a sit down meeting with them (maybe food will be involved…our son will not be present) to discuss this.

He has two brothers. We feel his eldest brother will handle the info fine. We again feel the youngest will be negative and reactionary, as this brother made fun of his differences (unique hobbies/nerdy-ness/geeky-ness-etc) the most.

If you’ve dealt with something similar, maybe you have ideas? Maybe you haven’t personally dealt with anything similar but could enlighten us with how you’d handle or go into this with a difficult individual.

:)Thank you in advance!

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10 Answers

12Oaks's avatar

My nephew has that same condition. I heard about through my mom in a “matter of fact” type of way. I know that all family dynamics are different, but in the case of mine there really was neuteral reaction. It is what it is, and it really never comes up during general conversation. Actually, besides for my mom telling me that once it never came up again. They were just in town this past week. We all know, are aware, but really, and not in a mean way, nobody really cares.

Personal reactions vary. Consult your families history before attempting something this so nonchalant.

SpatzieLover's avatar

@12Oaks We are quite positive his dad’s reaction will be disproportional when we tell him his own son has the same diagnosis. My husband is 35, BTW in case that matters to anyone.

cak's avatar

First, I can say that you have been a huge help to me, and my family.

Our son has recently been diagnosed as high-functioning Asperger’s. We’ve known something was going on, for some time, but getting to the diagnosis was a huge hurdle.

During the time he was being diagnosed for Asperger’s, there were medical issues going on, as well. In a moment of enough is enough, I confided in my Mother. Her first answer, ” Oh, Doctors are always trying to label children as something just to medicate them….blah, blah, blah. I zoned out at some point. Really, I was furious. I just had to mentally leave the conversation.

Since the time of telling her what was going on, she has been my typical mom. Overcompensating for a less than stellar reaction. She has finally admitted that it makes sense, if you know my son. The pieces to the puzzle are coming together and finally my son is getting the extra help he needs to navigate this world.

We’ve told a few friends, people that have direct contact with him. They have been wonderful.

I think there is a level of fear or misunderstanding, as to what it means.

For now on, with family (read, my mother) there is a direct way in dealing with her. If she asks a question, then starts the anti-anything rant, we just tell her that she’s entitled to those feelings; however, when she is around our son, neutral is the way to go.

JilltheTooth's avatar

When I was diagnosed with cancer, I first told my sister the nurse, because she goes into “med mode” at the drop of a hat, and I knew she’d be cool. Then I had to tell my mom who (unfortunately, predictably) blamed it on my Dad. I made the nursey sister tell the mean sister, because I just didn’t want to deal with her. My friends I just told in a matter of fact way, then had to ask some of them to save the freak out for other people, I had too much on my plate.

In my case, it was helpful to tell them when I had lots of information, and could describe how I was coping with it and what I was planning. I treated it as something that was different and difficult, but not insurmountable. If you have some coping strategies in place, and can describe them, that might help, too. The important thing for them to know is that he is the EXACT SAME CHILD that they already know, he hasn’t changed, the only thing that is different is the fact that you now have information that will make his (and your) life more manageable.
And what @cak said, she knows lots more than all of us about most of this stuff.
Good luck with all of that, sometimes it’s harder in the beginning to deal with this than with the actual issue.

BarnacleBill's avatar

You really need to think through what you ideally want for them to do with the information that you are sharing before you share. If there’s nothing constructive they can add to the situation, why do you really want to get into a discussion about it? Your husband’s made it into adulthood, is married and has children of his own. Does your son stay with his grandparents for prolonged periods of time? Then their “need to know” is centered around routine changes. Are they overly critical of your son? Do they still nag your husband as if were a child?

Perhaps telling them by e-mail is the best way to go. Let them know that you are relieved that you have a diagnosis, that your son will be receiving therapy, and that there is a hereditary component to Aspbergers. Then tell them explicity what you expect of them. They can google the term and reach their own conclusion.

cak's avatar

@JilltheTooth Your mother blamed your cancer on your father? Wow. My mother blamed mine on my biological father and now blames Asperger’s on my biological father, too!

I can say that I had no idea how to deal with Asperger’s until @SpatzieLover. She is a wealth of information. She also realizes the instant fear that hit me, with my son. Throw anything at me, I just want my children to be okay.

Because of @SpatzieLover, I was able to calm down, a bit. I know that life might be a little different than pictured, but this is still my son that I love to pieces.

wundayatta's avatar

I think this instinct to blame the other biological parent has to do with guilt. They feel awful that you have what you have, and they act out by trying to place the blame elsewhere. I don’t know if it would help to say the following, but it really isn’t anyone’s fault. You’re not telling your family in order to spread around blame. It’s so they can understand and perhaps even help. It is so they might enjoy their relative a little more. It’s not about blame.

Ok, having gotten that out of the way, I wanted to ask whether there was any possibility of not telling them? I’ve opted not to tell my parents about my disorder because I know they don’t believe in mental illness. Most of the rest of my family doesn’t know, either, but I did tell my faraway relatives last week when visiting them. I’m not sure what they made of it, because they did have some idea that my aunt (my uncle’s half sister) had what I have. She passed away of adrenal cancer almost a year ago, and she was the only one who knew about me. I assume she took the knowledge to her grave.

I’ve told some of my friends, and it is clear that they don’t understand, but they seem to be reluctant to ask questions. So I don’t know what to do.

I think these things cannot be understood without education. I think that if you tell people, in a way you are committing to educate them, should they need it. I don’t feel like it’s a job I want to take on. There’s too much involved. Too many symptoms. Too many things that people could say I am ducking responsibility for. So I don’t tell many people. It’s an option you might consider, together with the other options.

SpatzieLover's avatar

@BarnacleBill Are they overly critical of your son? Do they still nag your husband as if were a child? Yes. They don’t nag my husband, per se. It’s more that they don’t understand him. This includes the younger brother. They’ve treated him as if he’s a 12yr old in a man’s body. Most likely this is due to his differences.

We would email, however that has caused immense issues in the past. Besides, unlike most other families, my husband’s all live very near. Near enough for us to drive and see them. We have not been visiting regularly because of my husband & son’s issues. Both of them have difficulty with transitions and both are in therapy to learn how to transition easier.

You really need to think through what you ideally want for them to do with the information that you are sharing before you share. I agree. I believe my husband wants them to know our son is not “retarded” or “weird”.

@wundayatta If we didn’t have a son with the same diagnosis, we would not bother. My husband refuses to have our son grow up feeling ashamed about being different. That is why he insists on telling his family.

He would rather just go over there and tell them. Mind you he has AS, and is unaware of how they might handle that situation. I was the one to put the brakes on that. His father is unusual. I’d prefer we have a good idea of what we will say. We will certainly do that without laying blame.

We have told them that what our son has is genetic and that he will not outgrow it. They still say things back to us as if our son will change.

Telling them about my husband/their son will most likely open their eyes to the world of adult autism. He has daily troubles, including issues with parenting, trouble transitioning, and the need for routines. All of which he handles. He prefers to seek therapy to simplify his life. I happen to know that will be a point of contention.

@cak Thank you for your kind words. “we just tell her that she’s entitled to those feelings; however, when she is around our son, neutral is the way to go.” Yep, that may be what we need to do here.

@JilltheTooth Good luck with all of that, sometimes it’s harder in the beginning to deal with this than with the actual issue. Thank you! In the case of his family…you described this perfectly. The actual issue of AS, we as a family unit, are good with. So far his family has challenged us, and challenged are parenting skills and the way we handle our marriage…Oh my! I was unprepared for that. After reading your scenario, I’m wondering if just sitting down with his mom, might go over better. Then she could “break it” to his dad.

@12Oaks That’s how my family does things ;) My mom told my sister rather matter-of-factly. Since then, everyone in my family sends us the latest Asperger related news stories, emails of videos they know our son will enjoy, books/DVDs they know he’ll enjoy…it’s a night and day scenario.

SpatzieLover's avatar

@wundayatta I forgot to mention that we also feel it’s necessary to inform his family, as we have many nieces and nephews and it may be necessary for the parents to know.

12Oaks's avatar

@SpatzieLover I’m not sure really how my sister handle this at home with him and his 4 siblings, as they live like 150 miles south. However, I could say that our family, when together and stuff, not that we ‘ignore’ the situation, it never comes up. I never would even consider sending the information as your family does. Not saying one way is right and the other wrong, just kind of musing over how different family dynamics work, to each their own as no way is right and no way is wrong for every family.

I got the kid a couple books for his birthday. One on construction and one that explains stuff like why zebras have stripes. He seemed to like it.

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