Who do you share your child's ASD diagnosis with? And when/how do you tell your child? - Mothering Forums

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#1 of 8 Old 10-16-2012, 03:39 PM - Thread Starter
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I'm curious how other parents of kids with ASDs handle sharing their child's diagnosis. My 4 year old was just finally diagnosed today, which was totally expected, yet still very hard. Part of why I wanted him evaluated again (last full eval at 25 months) was so I could better explain his behavior to teachers, etc. So, sharing with them is pretty much a given. Part of me feels like I should keep his personal info private from others but I am not sure. By nature, I am not a private person at all and it would be my inclination to share with all of our family and friends, but somehow that feels sort of not right. I don't know. I'm just looking for input on how others thought this through.

Which brings me to my second question which is how and when do you talk to your child about their diagnosis? TIA
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#2 of 8 Old 10-16-2012, 05:51 PM
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My DS is not on the spectrum but has many developmental delays.  When he got that "diagnosis", even though we knew for years that he had delays, it was still hard to hear from an expert.


When a close friend's son was diagnosed with Asperger's, she messaged me to let me know because we're part of their local family.  But I know she didn't tell everyone.

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#3 of 8 Old 10-17-2012, 05:58 PM
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When I first learned the news about my child it felt like I was punched in the stomach.  I cried in the car on the way home until I said to myself that I would use this energy I was feeling to get down to business.  My child needs me and I need me.  I wouldn't let myself get lost in grief.  But, the grief I felt then I carry.  Part of "telling people" for me, was wrapped up in that grief.  I wanted people to see my child for who he is, his personality, his strengths, his potential and the vision I had of how he could grow and develop.  I didn't want the parents of my child's friends to see him as a disorder or "typical" spectrum kind of kid.  Honestly, that kind of outlook is rampant.   


I was afraid, and still am, of that kind of outlook that limits a child and gives others a limited perspective on who they are.  And, then, that outlook gets transmitted to your child.


So, I'm careful.  Because I do think that false perceptions of our children are real and I don't always want to take the energy I need to advocate or raise consciousness with the "whole world"... just with the people who matter the most to my child's development and to those who love him and care about him.  I also tell a few select parents who I know will get it and get him.  Because, honestly, most people haven't guessed he's on the spectrum.  They know he has learning support but they don't know why.


Then, beyond me and my need to protect my energy, I like you, want to respect his privacy especially since he is old enough to feel self conscious.  But, it's a fine line....there is also nothing to be ashamed of and embarrassed about either.  I told my child when he was 9 years old what his diagnosis was in a very matter of fact way.  That was when we learned of it.  But I also think that that is a good age in general to share that kind of information.  We had known for a long time that he was learning in a different way, at a different pace, and needed social "coaching".  We'd talk about his "way of thinking" all the time and how they way that he thinks means he needs different kind of teaching and explanation.


Telling him he had PDD-NOS for him told him things about himself that will probably always be true and that was helpful to him.  It made him feel like then there must be other kids who have the same "problem" and he's not alone.


So, he liked knowing he has PDD-NOS.  It also made it easier for him to accept his dietary restrictions because I told him that some doctors believe it helps children like him to be healthier and think more clearly. 


It's a process.  Your son is very young.  I didn't get the diagnosis until my son was a lot older.  For what it's worth, I wouldn't have told my son at 4 or 5 or even 6 and 7 about a diagnosis.  I would have described what I saw....which is what I did...


I know, it's a lot to take in Mama, not unexpected, but still jarring.  Be protective, I think it's wise, but don't be ashamed.  Be sad, but don't get lost in sadness.  Help him understand himself and who he is but don't give it a name until he's ready for that.  And, just know that like all your other instincts about him you are right.  Keep doing what you're doing.  You are going about the business of being his mom and doing a wonderful job.


Blessings to you and your family

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#4 of 8 Old 10-17-2012, 06:30 PM
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I am very open about DS1's ASD dx. He is 3.5 though, has some struggles obviously. I've never once had someone say, ah, ok, kind of like well that explains it then. I always, always get, "wow! I never would of guessed." with genuine surprise. DS1 is delayed, he functions like a younger child, but he is smiley, happy, does make eye contact, and in general a very charming little person to adults.  Of course we have hitting and biting problems and all sorts of other behaviors that come along with the ASD but it isn't so glaring obvious to others. There are a multiple of reasons why I decided to be very open about it. We live in a small town, attend a school with less then 100 kids for PK-8th grade, I have 3 kids there including DS1 who receives special ed services there and is frankly the first child like him that they have accepted, it is a private school. There is no secrets here, parents will find out, everyone spends a lot of time in the school and classrooms and they talk in the parking lot. My older kids are heavily involved in sports and I haunt the same places over and over again daily, same thing there. Close tight knit community. I see the same parents every where I go. And partly because I want to educate people. Autism isn't always the child rocking in the corner who is non-verbal. It is also my smiling, happy little bouncing blond haired boy who loves trains and dance class and the frozen yogurt store downtown that I have to take him to almost daily. Maybe people are talking about us and about his ASD in a bad way, maybe it will come to bite me in the butt later, but for now, I really am hoping that I am opening up some eyes to what ASD can look like and that it isn't always so scary. And other families have proven to be more accepting and supportive then I ever originally thought. 

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#5 of 8 Old 10-19-2012, 12:28 AM
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This issue has gotten easier for me over the years because now my DD is 16 and now I get to follow her lead! I'm not making some big decision for her, I'm respecting her choices. She's pretty open. She's very comfortable with her diagnosis. I waited WAY to long to tell her, and by the time I did, she felt bad about herself because she knew she wasn't like other people. After she knew and understood her diagnosis, she was able to start accepting herself. One day she came to me and said, "So, I am completely normal for someone with Asperger's?"  And when I told her yes, her whole body relaxed and she gave me a huge hug. (And she's not usually a very huggy person!)


I'm of two minds about who to tell. On one had, this isn't a bad thing, and I think we do our kids a huge disservice when we treat it like it needs to a secret. Why would it need to be a secret unless it were something shameful? Would we keep it a big secret if our kid had diabetes? Cancer? A broken arm? It's not the first thing I tell someone when I meet them, the guy who sits next to my husband at work doesn't know, but our true friends know. 


The expectations for most children/teens are completely inappropriate for my DD, so if we were in the business of keeping this a secret, we could never have people over or go any where. I've also found that being open with certain people in her life, such a swim coaches who might or might not pick up on it, usually helps them meet her needs better and communicate more openly with me. Not telling would build a wall -- how could they talk to me about what they see if they don't know that I know that she isn't a typical kid?


On the other hand, some people in my life, including my mother and my sister, are completely incapable of being kind or empathetic (not because they have autism, but just because they are bitchy). Rather than receiving support and acceptance from them when I told them, I just got stuck dealing with their sh*t, and I really wasn't up for it at the time. So for practical advice, I recommend using common sense about the people you know and their ability to be there for YOU and for YOUR KID.


I really can't be bothered to be friends with anyone who can't handle this information with grace.


My extended family I'm kinda stuck with -- except that I moved far away and seldom visit. winky.gif

but everything has pros and cons  shrug.gif

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#6 of 8 Old 10-19-2012, 06:56 AM
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We don't have a diagnosis for DS (yet... suspect Asperger's but he's only 3.5, plus there is likely something else going on with him too) but I will say that in my circle of closest friends, keeping our struggles a secret ended up doing more harm than good. It led to lots of misunderstandings about DS, about my parenting & my personal beliefs, etc. and I think could have ultimately destroyed our friendship if I hadn't eventually opened up about what's been going on with him. He is clearly a little different (though not blatantly so, strangers & casual acquaintances wouldn't likely pick up on it) and not being open about that ended up making everyone feel like they were tiptoeing around us, I think. Our friends wanted to help, to just be supportive, to understand how to best support DS, but there was no path open for any kind of conversation or acknowledgement of it. I don't think this is the kind of thing strangers need to know about DS. It's not something I would tell people when they first meet him. But I've come to believe our closest friends (our chosen family) should know.

I also talk to DS pretty openly about what's going on with him, and yes, I would share a diagnosis with him too, even at this age. He is a very concrete thinker, he has a high drive to understand things, and talking to him frankly seems to really decrease his anxiety and discomfort. I might feel differently if I had a child with a different personality, but with him, the more information & understanding, the better.

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#7 of 8 Old 10-19-2012, 07:26 AM
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I would add a few more thoughts to the conversation, that being protective and private is different from being secretive.  It is important I agree to share information when not doing so leads to misunderstanding and I have done so many times myself.  BUT, especially as children get older, and depending on their social sophistication and desire for acceptance, they I believe, have a right to share information about themselves in the way that they choose.  There is a circle of people around my child who know his diagnosis, and then, there is the wider world who does not.  That is just being sensitive to him I think.


I also from my own experience know that misunderstandings happen even after frank discussions about diagnosis and things are not always made better by being forthright.  I once had a group of boys tell me that one of their parents said that my child had a "broken brain".  This is a parent who knew my child's diagnosis but she didn't have the sensitivity and skill to help her child understand how my child thinks.  This asks a lot of parents....I know....and I didn't blame her, but, I never expected her to say what she did.  She then unknowingly gave a whole group of boys information that unless it was cleared up was very hurtful to his friendships.


It is not unusual for middle school aged children (which my son is on the cusp of)  to call each other "brain damaged" as well for example.  I have heard of many incidents like this from other parents who's children have IEP's.  My child, is the kind of child, who has a strong desire to fit in, be part of a group, and be seen as smart, cool and a hard worker.  He of course, is a great kid, but has his quirks and I've needed to explain him and share his diagnosis when it was appropriate.  However, given who HE is I don't think it's fair for us and for him to have it be common knowledge what his diagnosis it to the families and children in our school community. 


I think that teasing out what works is very individual and I also think for me, I had to ask myself, how much consciousness raising was I willing to tackle.  We live in a very large community and my child is in school with over 800 children.  I have often used the special education staff at my child's school to do this work for me, asking them to advocate for my child with the extended day program for example, or discuss the issue with the children when the group of boys all thought my son had a "broken brain".  It isn't unusual for children to be curious and in fact these boys were as much curious about themselves as they were about my son as most of them have learning differences of one kind or another.  We all have "different" brains was really what they needed to understand.


And about sharing a diagnosis with your child I think it is less important to share a diagnosis (especially since he officially had three before one truly fit well) then it is sharing what you observe about your child with them so they understand how you see them and if they need support or extra help what that may or may not mean about them in relationship to others. 

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#8 of 8 Old 10-22-2012, 07:24 PM - Thread Starter
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Thank you all so much for your replies. It is really interesting and helpful to hear how others have dealt with this and are dealing with it. I guess I have time to consider this and don't have to jump into telling anyone quite yet.
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