Need advice on telling family about ASD

Page 1 of 1 [ 10 posts ] 

inachildsmind
Sea Gull
Sea Gull

User avatar

Joined: 13 Feb 2014
Gender: Female
Posts: 212

17 Nov 2014, 3:48 pm

I have soooo much to explain to my mom. We have not been talking much this year because she and my father are very difficult to speak with about things. Finally, I think she realized I was not going to back down and let her see me and the kids without addressing the "Elephant in the room". I am tired of them pretending like I am just sick or crazy and allowing things to happen and then blame me for them or refuse to accept what has happened. My mom is finally giving me a chance to speak my mind and explain to her my pains and things that have upset me this year. The first thing I wanted to start off with was my ASD diagnosis I got about a year ago. Because I know what to say and there is so much to talk about on the subject, I am having difficulties organizing my information as I keep trailing off when I write about it. I am sure many of you can relate and I am asking anyone who has been in the situation where they had to finally explain to their family, or remind, reexplain things or if there is anyone who knows a good way for me to organize the information. I need to script it out or all will be useless when the time comes. I also need to explain about my sons diagnosis too and the idea of my younger sister possibly having it as well (she has been seen as gifted growing up but is not showing a lot of me in the last year as life has changed for her , she is 20). I was thinking of going over the DSM-V to start off with as a guideline. What do you all think?



Meril
Raven
Raven

User avatar

Joined: 16 Jun 2014
Gender: Female
Posts: 114
Location: In my dreams

17 Nov 2014, 4:49 pm

I haven't really been where you are, but I hope I can still help. You could brainstorm with a tape recorder so that you can get all your thoughts out and recorded before you start working on your script. As far as your sister, you might want to wait and just tell your parents about yourself for now. You could explain autism to your family while your sister is in the room, she might come to you if she is concerned that way. Good luck.



progaspie
Veteran
Veteran

User avatar

Joined: 22 Jul 2011
Age: 66
Gender: Male
Posts: 673
Location: Australia

17 Nov 2014, 5:07 pm

I would start by telling your parents about your son's ASD diagnosis. They deserve to know this because he is their grandson. I definitely wouldn't be drawing your younger sister into the conversation.

They then might ask questions about ASD. Give them time to digest the information and then gradually bring up that you might have ASD. Let them draw their own conclusions.

You admit that your communication ties with your parents are very tenuous. I don't think your ASD diagnosis is a magic portal that explains everything about your past life to your parents, which makes up for all the misunderstandings which have occurred and now enables you to have a normal life with your parents. I hope I'm wrong and that it all works out with them.



KimD
Deinonychus
Deinonychus

User avatar

Joined: 21 May 2013
Gender: Female
Posts: 328

17 Nov 2014, 6:51 pm

Do you think you'll have more than one occasion to talk with your parents/mom about this? How much do you think they can handle in one session? If you think they might start to feel overwhelmed or frustrated if they think you're talking too much, you might want to be selective with what you tell them at first.

It might also help if you can give them a brief article or two that you feel summarizes things well, or even a pamphlet from your doctor or the net! I know that might seem impersonal, but on the other hand, it could help them to see at a glance that you're not making things up--and save you from having to organize everything that you want them to know. The third-party tone might also help them think more clearly by separating you and your son's diagnoses from your relationship problems, even if it's just for a moment. If you're the only one providing the clinical information, they might just think, "oh, here we go again" and find it hard to stay calm and focused even if they're trying.

I don't want to underestimate your parents' comprehension skills, but the DSM-V might be too complicated or intimidating.

If you get the chance to talk things over more than once, try to keep your patience and take their interest and efforts as a good sign. I hope this will be a fresh start for you.



inachildsmind
Sea Gull
Sea Gull

User avatar

Joined: 13 Feb 2014
Gender: Female
Posts: 212

17 Nov 2014, 7:09 pm

progaspie wrote:
I would start by telling your parents about your son's ASD diagnosis. They deserve to know this because he is their grandson. I definitely wouldn't be drawing your younger sister into the conversation.

They then might ask questions about ASD. Give them time to digest the information and then gradually bring up that you might have ASD. Let them draw their own conclusions.

You admit that your communication ties with your parents are very tenuous. I don't think your ASD diagnosis is a magic portal that explains everything about your past life to your parents, which makes up for all the misunderstandings which have occurred and now enables you to have a normal life with your parents. I hope I'm wrong and that it all works out with them.


No, my parents already know I have it. They do not understand it and because they dont they have dismissed it without researching and without asking me anything about it or how I am with the diagnosis. And you are wrong. It does explain my life. I should have been diagnosed as a child but my family refused to listen to the teachers on multiple parent conferences that told them I was not socially mature like the other students. My parents said I was just shy and I will get over it. My life has been a roller coaster till puberty when I started melting down much more than years before. Then they started taking me to a psychiatrist and doctor because they said I was crazy and mental. The doctors said multiple things and my parents wanted a quick fix and they just doped me up with medications to make their problem go away. I was suicidal as a child, being female had doctors, police and my family convinced I was doing everything for attention. I recently stopped allowing my family to try and control me or belittle me which led to us not speaking this past year. They thought I would need them and I would give in and I didnt. My dad is a stubborn ass who thinks everything is a conspiracy and my mom has a mind of her own that is ONLY shown when she is NOT with my dad. So I am excited about explaining things to her because maybe she will understand me now as a person instead of what my dad wants everyone else to see. As far as my little sister goes.She is heading down the same path and I know she is autistic. She is more so than me and it is starting to effect her life very heavily. She is having meltdowns more and more and she has become a hermit minus her job. She cant seem to push herself past where she is and she has SO much to offer with parents that keep telling her she CANT do anything. Which with autism , its very easy to manipulate and convince us that we are not capable at doing things. I need to be her voice, maybe not at this get together, but maybe in the future. She also has terrible gender issues and has been depressed lately. She needs to see someone but my family refuses to see she is in trouble. My older sister AND I both agree my parents need to see what others see on the other side. Even if they still dont listen, I feel its worth a try for my sisters future and her self esteem.



inachildsmind
Sea Gull
Sea Gull

User avatar

Joined: 13 Feb 2014
Gender: Female
Posts: 212

17 Nov 2014, 7:13 pm

KimD wrote:
Do you think you'll have more than one occasion to talk with your parents/mom about this? How much do you think they can handle in one session? If you think they might start to feel overwhelmed or frustrated if they think you're talking too much, you might want to be selective with what you tell them at first.

It might also help if you can give them a brief article or two that you feel summarizes things well, or even a pamphlet from your doctor or the net! I know that might seem impersonal, but on the other hand, it could help them to see at a glance that you're not making things up--and save you from having to organize everything that you want them to know. The third-party tone might also help them think more clearly by separating you and your son's diagnoses from your relationship problems, even if it's just for a moment. If you're the only one providing the clinical information, they might just think, "oh, here we go again" and find it hard to stay calm and focused even if they're trying.

I don't want to underestimate your parents' comprehension skills, but the DSM-V might be too complicated or intimidating.

If you get the chance to talk things over more than once, try to keep your patience and take their interest and efforts as a good sign. I hope this will be a fresh start for you.


Depending on how this one goes with her, I wont really know if there will be more opportunities. We have other things to discuss too, not just the ASD which may be a bit more conflicting.
Being in a brain "fog" would you know any good articles that I could show? I have so much to write, but it would be helpful if I had a direction. If you cant think of any that is fine, I appreciate your help and advice. It is helpful.



KimD
Deinonychus
Deinonychus

User avatar

Joined: 21 May 2013
Gender: Female
Posts: 328

17 Nov 2014, 9:10 pm

As you might already know, the most common sources of info usually focus on children, but I've found a couple of pages/sites that talk more about adults:

aspergerstest.net is a blog that includes some checklist descriptions that might be relevant to you, your sister, and/or your son.

wisegeek.com describes itself as "clear answers for common questions." It's kind of like Wikipedia but more succinct and maybe more accurate, because they don't try to document every tiny detail about a given topic. For better or worse, it has a search engine that leads you to many wisegeek articles that explain ASD issues well.

WebMD.com has a few pages that list and describe ASD traits in brief and non-technical language, and they include information about adults on the spectrum, but they use the word "symptoms" :p

Sorry I don't have more, but I'm sure lots of other people on the forum can offer suggestions, too.



inachildsmind
Sea Gull
Sea Gull

User avatar

Joined: 13 Feb 2014
Gender: Female
Posts: 212

17 Nov 2014, 9:17 pm

KimD wrote:
As you might already know, the most common sources of info usually focus on children, but I've found a couple of pages/sites that talk more about adults:

aspergerstest.net is a blog that includes some checklist descriptions that might be relevant to you, your sister, and/or your son.

wisegeek.com describes itself as "clear answers for common questions." It's kind of like Wikipedia but more succinct and maybe more accurate, because they don't try to document every tiny detail about a given topic. For better or worse, it has a search engine that leads you to many wisegeek articles that explain ASD issues well.

WebMD.com has a few pages that list and describe ASD traits in brief and non-technical language, and they include information about adults on the spectrum, but they use the word "symptoms" :p

Sorry I don't have more, but I'm sure lots of other people on the forum can offer suggestions, too.


thanks this is great place to start!



em_tsuj
Veteran
Veteran

User avatar

Joined: 25 Mar 2011
Age: 35
Gender: Male
Posts: 1,786

17 Nov 2014, 9:18 pm

I hate to be a Debbie Downer, but I don't think it matters how you present the information. You are not going to convince your parents to change their minds about AS. If they didn't listen the others times, why would they listen now? They didn't listen to multiple professionals from various backgrounds, so why would they listen to you? It sounds like they don't believe in AS and aren't going to. At best, they might humor you by pretending to listen, then go back to blaming you for everything.

I came out my parents regarding AS multiple times. They didn't care what I had to say about AS. The same thing is true for 99% of the other people I have told. Most people don't know very much about AS and don't care to do the research. Those who do accept the diagnosis don't need a big long presentation about AS to respect you and your diagnosis. They just do it. They are open-minded about it because it is an attitude they possess. It has nothing to do with any effort on your part.

My advice would be to leave it alone. Stop trying to get your parents to understand your AS. Focus on helping your sister...but if she doesn't want to get diagnosed, don't press the issue.



inachildsmind
Sea Gull
Sea Gull

User avatar

Joined: 13 Feb 2014
Gender: Female
Posts: 212

17 Nov 2014, 9:25 pm

em_tsuj wrote:
I hate to be a Debbie Downer, but I don't think it matters how you present the information. You are not going to convince your parents to change their minds about AS. If they didn't listen the others times, why would they listen now? They didn't listen to multiple professionals from various backgrounds, so why would they listen to you? It sounds like they don't believe in AS and aren't going to. At best, they might humor you by pretending to listen, then go back to blaming you for everything.

I came out my parents regarding AS multiple times. They didn't care what I had to say about AS. The same thing is true for 99% of the other people I have told. Most people don't know very much about AS and don't care to do the research. Those who do accept the diagnosis don't need a big long presentation about AS to respect you and your diagnosis. They just do it. They are open-minded about it because it is an attitude they possess. It has nothing to do with any effort on your part.

My advice would be to leave it alone. Stop trying to get your parents to understand your AS. Focus on helping your sister...but if she doesn't want to get diagnosed, don't press the issue.


I get what you are saying but I never got the chance to tell my parents anything about it. This will be the first time I tell my mom about when, why, how, what etc. I sent her a text once a year ago that said "I got a diagnosis and I want to tell you in person about it and how the process happened" Then it went months without hearing from them and my mom called out of the blue and said "Does this illness you have prevent you from moving on with the past?" and then I pretty much told her through text that I had aspergers (i hung up on her) and told her if she cared about it she would have asked me about it when I got the diagnosis and wanted to meet up months ago. Since then my older sister told me my mom has looked up Autism and said I am nothing like that. No, I am not classic autism. That is what I am going to explain to them. Why the many many doctors told me they finally came up with diagnosis of HFASD or Level 1 now aka Aspergers. My mom wants to know why I am upset with her. She really doesnt understand and when my dad is around she acts like he is always right and she has no voice. Now that I get her to myself, I am hoping she will be more open minded like back when I was a kid.