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How and what to tell people

Posted by on Jan. 15, 2012 at 1:48 PM
  • 14 Replies
My 3 year old doesn't have an official diagnosis yet but he is on the spectrum for sure. I just don't know exactly where yet (I find out in 12 days). I only told a handful of people that he was being evaluated and got varied responses, from, "Yay, how exciting!" (because apparently having autism means he will have a special talent) to questioning that autism even exists. Because of this I am kind of scared to tell people his diagnosis!

How, when and what did you tell people, if anything? Any good ideas how to tell relatives?
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by on Jan. 15, 2012 at 1:48 PM
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by on Jan. 15, 2012 at 3:57 PM
I feel the same way. My 2 1/2 year old daughter, Anna, doesn't have an official dx yet. Most people I tell that she has an expressive and receptive speech delay, but it is obviously more than that. I don't want to start saying autism until I know for sure, but in my heart I'm pretty sure. It's a little hard to admitt. I guess after u tell enough people you will get used to it. My nephew is also autistic and is 4. My sister didn't really tell many people for a while but I think it is getting easier for her now. I don't think there's an easy answer you just have to do what feels comfortable for you and your child. The hardest part I think is people's ignorance, but maybe that's our job now to start letting people know the truth. It's so hard to explain sensory integration and all the other complicated aspects of the dx. It's going to be a long process for us.
by on Jan. 15, 2012 at 4:46 PM

I'm excited to get my son in for a full evaluation to find out what his strengths and challenges are, because then I can help him, and others can help him be better.  It's like finding a bridge to communication, opening up a whole world you don't understand yet.  Going from "there's just something wrong, and I don't know what it is" to "now we know what it is and now we can DO something about it" is really awesome.

I won't lie and say I think the journey is going to be wonderful.  Some of it's going to really stink.  But I'm trying to be positive and look at it as a new adventure, and learning more about a fascinating new world.  My son just got his diagnosis, but that's just the start.  Now we have to fill out bunches of paperwork, applications, referrals, etc., to get a full evaluation so we know about all his needs and to get services that will get him BETTER.  I'm not excited about the paperwork, but I am excited about what comes next.

When talking about it with other people, most of the time I just come out and say he's autistic.  I live in a small city, and one that has plenty of folks with special needs, so I don't run into too many people who are completely oblivious.  So far, coming out with it up front helps people be more understanding of his behavior when it's not good, and frankly at this point I'm not too worried about losing friends or face.  My life is pretty much centered around my children right now, and I don't have time or emotional energy to waste on folks who don't want to  understand!

by on Jan. 15, 2012 at 7:32 PM

For family members, I found THIS and printed a few copies off to take with me at the next family function. A ot of people are just misinformed. I also gave them statistics... like 1 in 70 are affected. I also gave my parents and close family members info found in the 100 day kit at . I told family members about what was going on. Not once did I hide from it. I still have some family members that choose to ignore it, or think I am crazy, but I learned that I am not trying to please them. I am trying to HELP my child. If they can't see beyond that, then I don't have the time or energy to deal with them.

People may be proud that you are seeking out help and getting a diagnosis becuase it shows that you are doing everything you can to help your child. People also may think you are looney tunes. Don't let their own ignorance bring you down. Either way, learn as much as you can and spread awareness for your child and other children on the spectrum.

by Bronze Member on Jan. 15, 2012 at 11:34 PM
I really let my mom tell a lot of our family I really have told a few good friends but not many infact many I communicate with on fb & by phone I have not told . I am actually finding it hard to tell people I know well weird right. It's easier to tell strangers sometimes. Many people do not see anything yet when they spend a short time with us & it's not always simple to bring it up or put it in an email.
by Bronze Member on Jan. 15, 2012 at 11:41 PM
I told all of my close family right away. They all knew what was going on so i just told them the diagnosis and then gradually they told the rest of the family.
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by on Jan. 16, 2012 at 7:45 AM

When my kids were first diagnosed, I had a hard time telling people - my mom told my family for me and they have all been supportive. On facebook and the like, for friends that I did not speak to on a regular basis, face to face - I simply posted this as a note:

A lot of people were shocked and wanted to know more about what we were going through and what Autism is - and so now I talk about it freely. Like I said, it was hard for me at first - but people surprised me and wanted to know more. 

My father though, whom I don't really speak to that often, doesn't really understand how to take it - he called me after he found out that there was "something wrong" with my kids (I don't think there is anything wrong with them, just that they are different and because of that life is harder for them). All he kept saying was "its a shame about those kids of yours.." and I wanted to scream. But that call also let me know that he "trolls" my facebook, so hopefully he'll learn something and be less negative about their diagnosis. If not, so be it - he's not a part of their lives on a regular basis anyhow!

by Wendy on Jan. 16, 2012 at 8:05 AM

At first I just told people he has delays, then when we got the diagnoses I just told everyone and put it as now we can get him more help, etc, and alot of people said oh he's a boy they just talk late etc... but everyone was supportive pretty much, sometimes people don't know what to say and they say oh he's fine etc.  I just have to let it go, because everyone deals with it differently.  

by on Jan. 17, 2012 at 1:41 PM

My son was diagnosed 9 months ago.  We immediately told the teachers in his daycare, because they needed to know his diagnosis.  I also told close family right away, and a few friends who understand special needs or have children with special needs (and I knew would be supportive). I told my supervisor since I needed to change my schedule temporarily and one of my coworkers.   Since then, I've told a few people here and there, but most don't really need to know.

Everyone is different, some people really like to tell everyone and raise awareness. In my case, I'm not always comfortable telling more casual acquaintances so I choose not to.  Some have questioned his diagnosis.  No one said how exciting, that's an interesting way to look at it.  My son is also HFA, so it really isn't necessary a lot of the time.

by on Jan. 17, 2012 at 5:57 PM

I don't think of my son's autism or my younger boy's ADD as a diagnosis so much as part of who they are and therefore part of who I am.  I am scatterbrained, often late and usually dishevelled because I invest 95% of my time and energy keeping them together.  So, when I forget my wallet at the counter in the quick stop I will tell the lady at the counter my kids are special needs and I think it might be contagious cause I wasn't like this before they showed up.  They usually laugh and say bless you or something to the effect.  When my youngest boy has a meltdown in wal-mart because he needs 10,000 things I can't and won't buy him but he desperately wants I will tell anyone who stops to gawk that he has ADD and SPD and he is working it out.  Let them think what they want.  I didn't think about how to tell my friends or family because I shared the entire diagnostic process with them for both of my boys.  I told them what I was struggling with before we even went to our first visit, what we discovered about them along the way and celebrated/mourned the diagnosis with them when we got it.  So I guess for me it isn't something I choose to tell or not tell, it's who they are.  If the subject comes up I'm fine to talk about it.  If not, I don't.  Their teachers and any coaches who will be in charge of them (swim coach, boyscout cub leader, sports coach) I tell before they meet the kids if possible.  Just so they know what to expect and I can answer questions about the boys if they have any.  I am also open with my boys about their diagnosis.  They know that their brains work differently than a lot of other peoples.  They each know what their "letters" are.  They know that their Daddy has ADD like Noah and that Mommy's brain works a lot like Deuce's (the autistic one although I don't have a dx for myself).  If someone asks they will tell them, usually it's a friend who is questioning why they or their brother is doing something unusual.  When they have an issue with someone else I am able to talk with them about how they think and how their friend is likely thinking.  How each is behaving in the way that makes sense to them.  

Anyway, I feel like I just rambled a lot.  The main thing I'm trying to say is don't feel like you need to whisper the dreaded words "my son has autism".   If you say it like it's terrible news then it will be.  

by on Jan. 17, 2012 at 6:16 PM

I was actually somewhat relieved to have a name for what my son was going thru. I was obviously worried and upset when I heard autism (he has aspergers) but at least I had a name for it which opened up doors and ways to help him. They school is where we first heard the possibility so we really didn't have to tell them much. People that are around him quite abit already knew that something was different so it wasn't too hard to tell them either. I think the hardest people to talk to were my bosses and coworkers. I had to tell my bosses when the school kept calling me when they were having problems with him in school. I get alot of suggestions of how to help him from people that have no idea whats its like to raise a child with special needs. I just nod and smile and say thank you even tho they have no idea what would possibly help my son

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