Telling friends and family

bliss611 · February 2014

I'm just curious how some of you have handled telling family and friends about your LO's dx.

DH's instinct is to never talk to anyone about anything. I tend to be a lot more sharing about my life, in general. In this case, I also want and need the support of friends and family. So far I've told my best friend because I talk to her about everything. I'm not sure when is the right time to tell people.

Still getting my head around it myself. DH seems to be in denial - barely asked me about any details when I told him the dx and talks about the proposed therapy as "almost like tutoring when you fall behind in school" and doesn't seem to acknowledge that even if DS manages to catch up and joins mainstream kindergarten, the ASD still isn't gone. And I feel like I need others to talk to because of his lack of mental presence in dealing with it.

mommy0411 · February 2014

I would tell people as your comfortable. We told our support system about DS1's autism almost immediately. We needed their support and given they were family they needed time to process the diagnosis as well. Now a year out, I tell people as needed. I don't keep it a secret but I only tell people if it will help DS or them. If your DH is in denial, give him the time to process. Coming to terms with an autism diagnosis is definitely a grieving process and everyone handles it differently. I don't think I have completely accepted the diagnosis yet but I am getting close and it's been a year since my son was diagnosed. My husband on the other hand accepted it almost immediately and needed much less processing time!

kcisthebombdotcom · February 2014

I've told people as its come up. the only people we've consciously shared the dx with is my parents and her therapists. I'm not hiding but not letting everyone know just because either.

bliss611 · February 2014

I agree - I don't want to tell everyone we know. Obviously family. I'm thinking of our friends who know of his issues with separation and his adjustment issues at school and the fact that I was looking to go back to work once he did adjust to some childcare arrangement. So we get friendly, casual questions about his progress quite often.

I think I like the "as it comes up" approach. (Thanks KC13)
Because honestly, no one except his care providers NEED to know. But I also feel weird consciously hiding the dx from close friends who ask about his progress at school (or lack thereof).

lite-bright · February 2014

My dad arrived from OOT for a visit like a day after we got DD1's dx. We gave ourselves a couple of days to process and then told him, and made phone calls to immediate family (the rest of our parents and most of our siblings). No one even knew we were getting her evaluated, so I'm sure it was a shock, but we also didn't have to deal with people brushing us off with "oh, she's fine, you just worry too much" because pretty much the first time they heard anything was backed by a medical professional's dx.

I've told other parents as it comes up. Usually if we have a playdate, it comes up; I'm fairly open about it with parents of kids that she considers friends. DH has discussed it with co-workers. We've also talked about it with DD1; I'm not sure how much she has absorbed at this point, but the word "autism", at least, is no surprise to her.

Certain people will likely never know because they just don't need to. My grandparents don't; they live far away, we see them every couple of years, and there's really no reason to tell them. Our aunts/uncles/extended family don't know, and I don't think my parents are, say, discussing it with their friends or siblings (my mom has told me specifically that she feels it's our news to share). Extended family may be told at some point, but again, they're 1,000+ miles away with interaction being mostly limited to Christmas cards and FB.

The one thing I do find tricky is FB. I occasionally re-post or share ASD or SN related stuff, but it's rare. I have not explicitly posted that DD1 has a dx or anything that directly links her to ASD. That's pretty much where I've currently drawn my line in order to limit the spread of information among casual acquaintances and keep in mind that I want her to have control of that info eventually.

MirandaHobbes · February 2014

I've had to deal with the "oh there's nothing wrong with him", even though we had both an educational and medical diagnosis. People thought, like your DH, that the therapies would help him "catch up" by kindy. It was easier when he was so little and cute. Now that he's in kindy I've really struggled with telling people. I want to tell people as a way to explain away his behaviors, because basically he presents like a typical child who is really picky, demanding, and disrespectful. It's keeping me up at nights, and it's just going to get worse as he gets older and less cute. The bottom line is that I have to seperate my feelings of inadequacy and anxiety and people's needing to know. I, too, have not been one to overshare on facebook or "like" too many ASD-related things on facebook. Other parents are the complete opposite, completely decked out in autism awareness everything, sharing memes and affirmations daily.

Princess_Lily · February 2014

YellowLilies said:
We take a need to know approached. It is his medical information and I want him to ultimately have control over who knows so in the mean time I try to tell as minimally few people as possible- basically my immediate family (parents, siblings), medical providers, and school. We have not told any extended family or my husbands family (they would misuse the information).

I told my family in person and mailed the school his eval with a cover letter for his file. I also email and speak to his teachers/therapists.

This. To us, this is DS's medical history. Its private information...if/when he wants to share his story, he can.

Assembly_Reqd · February 2014

The people we have been totally upfront with DH's parents and the people we have designated in our will to be his potential guardians. One of my sisters, who is a nurse at the hospital he was born at (and honestly my rock), knows everything too. She's local and babysits. I assume if any other of my siblings have questions they will ask her. We have really supportive families, but are just not big "sharers".

I wanted them to be familiar with his healthcare binder so that they know my filing system. If something happens they can find all his doctors, important diagnosis papers and copies of his most recent MRI, etc

I want them to be fully aware of the responsibility they will be taking on so we can name alternatives.

lemen99 · February 2014

I think it depends on where you are and what your family is like. We always knew, and so for us it was comforting to know and to share that with our family. Everyone is different, Do what feels best for you!

typeset · February 2014

We invited my in-laws to attend the first Dx meeting and shared the reports with them. I told them to share as they saw fit and entrusted my FIL (MD) to field questions from that side of the family. I openly like and discuss related issues on Facebook, so it's not a secret from our friends and extended families. Has lead to some very good discussions. I've also been able to help people go through the process who otherwise wouldn't have reached out. Teachers, caregivers, and some coaches know. Strangers can piss right off. We tend to get incidentally outed. Neighbors figure something is up when they hear where he goes to school and his classmates' parents have been slowly finding out as we chat and they ask about things like our class selection for next year.

Want a personalized experience?

Telling friends and family

Re: Telling friends and family

Choose Another Board

Search Boards