How do you help people undertstand?

Post Reply New Topic

I have not received an official aspergers diagnosis yet. My therapist (she is knowledgeable where autism is concerned) is certain that I have it though. Still, I am in the process of going through a formal diagnosis. I have decided to wait for the test and results before trying to explain any of this to my extended family (I have some aunts, uncles and cousins who might be hurt if I did not mention this to them). Assuming that my therapist and I are right, I will need to figure out how to talk to my family... figure out what to say... and hopefully manage to be informative without boring them to death or going off on a self centered tirade about the things that prompt me to shut down.

So... how do you do that? Should I just mention that this is what's going on with me and leave it there... figuring that if they have questions they'll ask, if they don't they won't. Should I make a list of key points and not go into further detail unless specifically asked? How do I know what is an important point and what is just an otherwise silly detail that I just happen to thing is worth noting? It all seems important to me... and I notice that I take for granted that people have a basic understanding of autism... it never occurred to me that you would need to tell people that autism cannot be cured with the right combination of pills until my mom told me how exiting it was that I was seeking a doc's diagnosis and could finally get the right cocktail of pills to fix my screwy brain chemistry. Also, when is the right time and place to have this talk with these people? Socializing is not my strong point, the phone freaks me out... would it be rude of me email people? I think that seems an acceptable route to take. It gives my family the ability to skim quickly or reread or whatever. No one is on the spot this way, right?

If anyone has any insight into this, I'd like to hear it... Any things that worked well or did not work at all... any pointers?

Don't put too much pressure on yourself to deliver what you think they want/need if it won't be appreciated, many people don't even notice the effort that goes into telling them things. Communication is easier for them and they don't feel like they're going out on a limb every time they string a sentence together.

If there is one person in your family you are comfortable talking to I would talk to them and let them tell the others. If not, I would write a letter and let people read it and then ask you any questions they might have.

I don't have a diagnosis yet but when I do I will tell my family - at the moment I am not talking to them at all. Fear and anger.

I think email is a fine way to to it, especially if you send the message shortly after your official diagnosis. Any questions might come back via email, too, which would be a plus I would think.

You might consider keeping your explanation short, and as positive as possible, eg. I would not use terms like "screwy brain chemistry" when describing my autism to my family.

I've disclosed my AS to a few friends via e-mail & it went pretty well. I point them to a series of YouTube videos -
http://www.youtube.com/watch?v=hKzY3u_cUhk
http://www.youtube.com/watch?v=M4PCKa3TNO8
http://www.youtube.com/watch?v=EwfDq1UEWv0
- because I think they are a good "non-scary" introduction to the subject.

I told my mother face-to-face ... and that didn't go so well. She's not exactly open to the idea.

I went for a walk with my sister & told her about my diagnosis - that went incredibly well. She already knew a lot about AS, because it turns out that she has a lot of the characteristics (but she doesn't think she actually has it) - and has apparently already done some research on the subject.

I recently went to a family reunion, but didn't tell anyone about my Dx. In the course of conversation, some of my "issues" came up - but I didn't go into any great detail as to *why* they were issues (it just didn't seem appropriate to make the conversation all about me.) For instance, one of my cousins said that she loves to swing on porch swings & rock in rocking chairs. I said that I also love both of those things - and rocking really calms me down when I'm stressed. I didn't think she really needed to know at that moment that, for me, rocking is called "stimming" and it is a characteristic of people on the autistic spectrum, of which I am one.

There is a really good book, Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum that goes into great detail on the subject of how to disclose your AS (and how to decide who to tell.) Also, Asperger's from the Inside Out has a pretty good section on disclosure.

Best of luck to you!

Thank you each for your insights. They are appreciated.

Irisrises, it had not occurred to me to speak with one family member and let them tell others. I have an aunt on my mother's side who comes to mind immediately. I think that is how I will be handling that side of my family. I really like this idea. Also, I hope things go well for you when you tell your family, and I hope that you and yours can reach some kind of resolution. I have had times where I did not speak with my family... I loved the silence of that, but hated it that it had to get there in the first place...

wildgrape, that is what I need to be mindful of... I have a tendency to focus on negatives, especially since the negatives are what landed me my unofficial diagnosis. I think that I will get to compiling a list of positives... I wanted to be able to give examples in my explanation... and I'll keep 'short and sweet' in mind. I think email is the way to go with my dad's side of the family.

zeichner, I'm going to have to buy those books... I'll likely get the first one this Friday. I have a nice sized list of books to buy now. I'm very pleased by this. Thank you for the links as well. I agree, they are good, non-scary introduction. I think I will have to recommend them for my husband. He seems to be having trouble wrapping his head around the possibility of my being on the spectrum, yet being able to look people in the eyes. I do not believe he understand that much of what I do me from years of practice. Also, I think he'll get a kick out of her humor. Heh... cabbage patch...