Do you tell friends and family about your child's special needs?

[mikeys_mom]

We met with DS's dev ped today and she confirmed that she feels he meets the criteria for an Aspergers diagnosis. It wasn't really a surprise as we've met with her a few times and as things have been getting worse at school and at home, it became pretty clear what was going on.

DS has always been a quirky kid and everyone in the family and our close friends are well aware of that. Some family members know that we have been doing some diagnostic testing but we haven't really publicized the details, just that he's had some behaviour issues in school and socially and isn't performing to his potential academically. It's not so much that we want to hide anything but more that some family members tend to ask a million zillion questions and I just didn't have the energy to deal with it before we had any definitive answers.

The question is - now that we do have an answer, do we call/email everyone to let them know or just mention casually if it comes up. I honestly don't have the energy to have the same conversation with my mom and my sisters over and over again but I don't want to not tell them. Email just seems so impersonal considering we are generally a close-knit family.

With or without the label, he's still the same kid with the same issues he had before. Most of his really extreme behaviours tend to manifest in school. In most other settings he tends to come off as a quirky kid who can get upset pretty easily over small things.

What about friends? We have 2 families we are close with whom we have shared details of the diagnostic process. They also have kids with issues and it has been helpful to share information. But as for everyone else, I'm just not sure what to do. We need to make some significant changes at school (I need to start a new thread about that) and in our close-knit community, word tends to spread fast. I don't really care what people say about me but I would hate for DS to be stigmatized. I would rather give out correct information than have everyone speculating. I think there is the potential to make this a really positive learning experience for everyone, I'm just not sure how.

I would love to hear how others have handled similar situations.

[elliput]

I disclosed DD's diagnoses as the need arose in casual conversation. While important, it's not really life-changing, KWIM?

[mikeys_mom]

I disclosed DD's diagnoses as the need arose in casual conversation. While important, it's not really life-changing, KWIM?

Yes, that is exactly how I feel about it not being life-changing. It opens up resources and tools for us to help him but doesn't change anything.
Thanks!

[sariana]

I disclosed DD's diagnoses as the need arose in casual conversation. While important, it's not really life-changing, KWIM?

:yeahthat: I didn't feel the need to announce it, but I don't hide it either.

[annex]

In our case, we did contact some family and friends because getting the ASD diagnosis was so vital to improving our school services, that we wanted to share the info with those who understood that this would open a lot of doors to DS. Others where we didn't know their reactions as well, we waited more until it could come up casually in conversation.

After a while, though, I'll warn you that you'll forget who you told and who you didn't. You start to assume everyone knows, because it does become such a part of your life, even though it's just a label for your kid that doesn't supersede their individual identity.
And you'll start running into awkward situations... Like the one set of grandparents who seem to think you ought to be ashamed (or thinks all medical info should be private, but probably the former.) And you'll find your family in their house at a party where none of their friends know about your DS's diagnosis. Even ones with ASD grandkids of their own, that they could be sharing experiences with. Even though over a year has past since the diagnosis. And you'll be ready to flip out with frustration about whether you need to tiptoe around the topic to protect the grandparents' ego. Or if you should just start really loudly educating everyone in the room about just why your kid is out of sorts and can't respond to their questions about what his name is just right then.

Maybe you'll be fortunate enough that such things won't happen, but it's something to keep in mind. And it may help to be clearer up front about your level of privacy. I was never interested having to be the only person controlling the info about DS's diagnosis, but I think the older generation does see it as much more stigmatizing then I do. So be prepared that no matter how open you are, others will not be, and try not to let it bother you too much.

HTH,
Anne

[gatorsmom]

:yeahthat: I didn't feel the need to announce it, but I don't hide it either.

:yeahthat: Greenbean stands out when we are with friends or family. He just doesn't do well in social situations. He can do what appears to be some very naughty things and I feel the need to defend him by explaining that he has some special needs we are testing for. He's had some less-than-patient adults give him dirty looks or make comments and then I explain to them that he really cant control himself and is likely uncomfortable to some degree. The thing that is difficult is that Greenbean has Sensory Processing Disorder. His psychologist agrees as do both his Occupational Therapists that this is an accurate diagnosis except that (as of the last time I researched it) it was not yet an official diagnosis. And most people have never heard of it.

As we make progress in understanding Greenbean, I tell family and friends that I see. Our understanding of him and this condition is ever-changing so I give updates as I see friends and family and they ask how he is. But other than that, I don't keep them up-to-date on the latest.

[snowbunnies300]

I just told people as the situation arose. This was with DS1. Then with DS2 and DS3 people were starting to ask how they were doing and it was no big deal in saying that they too were autistic.

I do find that when you share the information with new people that you find out quickly who does and does not have an autistic member in their family.

[mikeys_mom]

Thanks everyone for sharing your experiences. It is good to hear that I'm not out of my mind to be very casual about it.

Yes, we have had issues at large family events. He either explodes and I need to take him away to calm him down or he will withdraw into reading a book in the corner. My go-to response to well-meaning relatives trying to "help" him join playing with the other kids has always been - M needs his space now. He doesn't like playing with big groups. He is very happy to just read on his own now. Please let him be. Smile.Repeat.Smile.Repeat.Smile.

MIL is very much the "hush-hush" type on these types of things. I expect my mother to question the diagnosis and ask lots of questions.

[egoldber]

The only person I have really shared extensively with is my MIL. Mainly because 1) she is nosy and asks lots of questions and 2) she used to be a school teacher and a school psychologist so she has a lot of insight into the system for me. :)

Other than that, I honestly don't really share. Mainly because I have found that unless the other person also has a child with issues they tend to think I am "that" mom and trying to explain away my precious snowflake's bad behavior or they just don't get it and it isn't worth my time. Maybe I am just cynical in my old age. :o

I do run interference of the "she just needs her space now" variety, but I don't feel a need to share why.

[Gena]

We share DS's autism diagnosis pretty freely. (We share information about some of his different diagnoses a little differently, so I'll just focus on autism here.)

DS's developmental and behavioral differences were very apparent well before his diagnosis with autism. My IL's generally blamed our parenting for these things. So it was a good for us to be able to tell them that there was a real, medical reason for DS's difficulties and that we had a plan of action in place. It hasn't always helped, because 5 years later most of my IL's still have very little understanding of autism beyond the basic public awareness blurbs. In contrast, after we told my parents, they sought out information about autism and tried to get a better understanding of it. They asked a lot of questions about DS's therapy and school programs. Understanding autism gave them greater insight into why DS does things the way he does.

I really can't see how we would not tell friends and other people we have a lot of contact with. Even at age 8 his differences are still fairly obvious and they always will be. So it doesn't take long for people interacting with DS to realize that there is something not typical about him. Even the wait staff at the near-by restaurant we frequent know that DS has autism. (They asked one day - very nicely.)

But there's another issue you need to think about before you start sharing the diagnosis with friends and family. What does your DS know about his diagnosis and how does he feel about it? How does he feel about other people knowing it?

It's important to always remember that how you talk to family and friends about your son's ASD is going to affect how your DS sees himself and what he thinks about himself.

[mikeys_mom]

But there's another issue you need to think about before you start sharing the diagnosis with friends and family. What does your DS know about his diagnosis and how does he feel about it? How does he feel about other people knowing it?

It's important to always remember that how you talk to family and friends about your son's ASD is going to affect how your DS sees himself and what he thinks about himself.

Well, we haven't told him anything new. He has been telling us for the past while that he knows his brain works differently than other people. He says that he thinks about things differently and understands things in a different way from everyone around him. He is amazingly self-aware about these things. We validate what he says and tell him that's why we are trying to find ways in school and at home that work specifically for him because what works for other kids doesn't work for him. We are still on the fence as to whether we tell him the name of the diagnosis.

But, you are right that it is something we really need to think about. Thanks for mentioning it.

[Gena]

Well, we haven't told him anything new. He has been telling us for the past while that he knows his brain works differently than other people. He says that he thinks about things differently and understands things in a different way from everyone around him. He is amazingly self-aware about these things. We validate what he says and tell him that's why we are trying to find ways in school and at home that work specifically for him because what works for other kids doesn't work for him. We are still on the fence as to whether we tell him the name of the diagnosis.

But, you are right that it is something we really need to think about. Thanks for mentioning it.

I know that it's hard to discuss the diagnosis with a child, especially one so young. But once you start telling family, friends, school personnel, it's out there and you don't always have control about what your child will overhear or who will say something to him. You want his first information to come from you, his parents, and not some well-meaning relative or some friend who says something like "My Mom says you have a*s burgers."

It's great that your son realizes that his brain works differently from other people. Telling him about his diagnosis might help him know that there are other people who have brains that work like his.

My DS knows that he has autism. He knows it like he knows that he is Polish-Italian or that he is Catholic or that he is from Michigan. It's a part of who he is and a part our "family culture". He knows that autism means his senses work differently, he thinks differently, and some things are easier or harder for him than for other people. DH and I are big on teaching DS to advocate for himself, and making sure that he has a (developmentally appropriate) understanding of his diagnoses is a big part of that.

Just some things to consider. Anyway, if you don't think it's the right time to discuss his diagnosis with him, you might want to wait on telling family and friends.

[pastrygirl]

I do only if I feel like I'm being judged as a parent for his "bad" behavior...

[MichelleRC]

I am pretty open about things.

It has made it a lot easier to explain why he is doing something (or why he is not ).

My parents are not "sharers" however, and just refer to DS's Aspergers as "his issues".

[Sweetum]

I am actually on the other side. I prefer not to share. I/We feel that the spectrum being as wide as it is, it can open up speculations for issues that don't exist. We find that in our community there is a lot of hush-hushness about these sorts, and coming out with something like this is only going to make people assume that we are "hiding" more than there is. I know that a lot of people in our community don't know about Autism and those who seemingly do, equate it with mental retardation. While I understand it is something that occur in someone with Autism, it is not the case with DS. And like I said, just becuase of how everyone rolls, coming out with something like this is only going to make people speculate about things that don't exist (sorry, repeating myself). Besides, we have always felt that even the people who mean well cannot look past the label. In fact I find this a bit frustrating with professionals and therapists as well. Some of them won't challenge him to the typical level. "Oh, he did this at level B+ when typical is A and he needs some motivation to get him to A". Different story...We have decided that when we are comfortable and when it is too apparent (he is not yet 4), we will just say that yes he has some social and communication challenges that we are addressing, and leave it at that without using the label. For us, the label has been very useful in getting the right support, beyond that others don't get it and it is useless to provide them that information. And honestly, I don't care if people think I am a bad mother who cannot control her child's behavior, and I don't explain and I don't feel too apologetic unless he does something really disruptive in which case I would apologize Autism or not. IMHO lables are for parents and professionals. Anyone outside need not know, and I am going to be unapologetic for his stimming or repetitive interests.

[inmypjs]

What a timely post. I am struggling with this right now. We have just casually shared about DS's dyslexia and homeschooling with DH's family. Some of the family are teachers and one thinks she knows everything about dyslexia. Her information is completely inaccurate. I would love to share with them everything we have learned and how far DS has come, but they are so closed. Part of me wants to have a family meeting and just give a little talk about what dyslexia is, that it really isn't just seeing things backwards, and that many talents go along with it. But I'm probably better off keeping my mouth shut.

My family, friends and DS's former teachers know everything and have been beyond supportive, so I should really just count my blessings.

I actually have no problem sharing his diagnosis with people, but my problem comes from that I have yet to meet anybody who has an accurate perception of what it is. So for me, sharing feels like setting DS up for everyone having these false notions about him. Sigh.