When and How Much do You Tell Your Non-Neurotypical Kids about Their Diagnoses?

[wendyroo]

It's official; today we received Peter's official diagnoses of high functioning autism and unspecified anxiety disorder.

 

Do I tell him?  How?  What?

 

He, obviously, knows that we saw the "talking and playing doctor" last week (when the evaluation was done), but I didn't tell him that the visit was any different that any of the other times he has seen a therapist/counselor/psychiatrist.  He did not know it was a testing session, so he is not anticipating any "results", so I don't have to tell him anything...I'm torn as to whether telling him would do good or harm.

 

Thoughts?  Advice?  Experiences?

 

ETA: Peter is 5.5 years old, in case you can't see signatures.

 

Thanks,

Wendy

[PeterPan]

No answer for you because I've told my ds nothing, but congrats on getting your results!  I hope they lead to good changes for you.

[OneStepAtATime]

Honestly at that age I think I wouldn't say anything.  When I told DD she was dyslexic she had been struggling for years and was in 5th grade.  At that point it was a relief and she was old enough to understand the positives (yes there are positives for anyone reading this who was not aware of that with dyslexia :) ) and negatives and what plans we were looking at implementing to work within the situation to effect a more positive outcome than she had had so far.  She was ready and willing and very interested and old enough to understand.

 

At your son's age I wouldn't say a thing.  I would just keep doing anything and everything to help him feel good about himself and find successes and positive growth.  If, at some point in the future, he does question what is happening, you might discuss something very gentle with him.  Maybe as he gets even older, especially if he questions things further, then have a more in depth talk with him.  Just don't let the diagnosis define who he is or how he sees himself (or your family, for that matter).

 

As DD told me once, dyslexia is not who she is.  It is just one part of a much greater whole.  

 

Hugs and best wishes.....

[geodob]

While the diagnosis has provided you with some 'labels'.

The evaluation would have also provided you with an understanding of his 'difficulties'.

What I am thinking of, is how the information that you have been provided with?

Could be used as he becomes aware of having 'difficulties' with particular activities, that his peers don't?

Where children become confused about why they find something difficult, and others don't?

Which they have no way of making sense of it ?

Also if anyone else understands their 'difficulty'?

 

Where as he starts to become aware of a difficulty with certain activities?

You could use the information that the tests provided, to help him understand it.

But it also presents an opportunity to develop alternative ways to do them, which work better for him.

So that he doesn't experience major frustration. But rather just understands and learns to do the activities in his own way.

 

Where he develops an idea of LD's as Learning Differences, rather than 'disabilities/ disorders'.

 

So rather than looking at it as 'telling him'?

You look at how to use the information provided in the tests?

As an ongoing course, for him to learn and understand his 'Differences'.

[Innisfree]

This is something I've been pondering too. We're midway through evaluations, but have already been told dd is on the spectrum after they did the ADOS-2. There's probably more to come. The difference is she's almost 10 and knows what they've been doing was testing. She also is extremely focused on privacy and extremely unwilling to discuss anything related to her difficulties. I'm hoping the neuropsychs can give me some suggestions of what, if anything, to say, but I'm listening in with interest here.

[Excelsior! Academy]

At 5 nothing. I would probably deal with it similarly to other sensitive topics. If they ask, tell. If the information becomes relevant, tell. If the child is of a certain age and it would be awkward if they didn't know, tell.

[Lecka]

We are very open about saying autism, but my son does not pick up on it yet.  We use it to talk with my other two kids.  We also have let the Sunday School teacher at church talk about autism.

 

So I think we will just be adding in more information as it seems appropriate, but the label will always be something he has heard. 

 

I talked to a counselor about explaining the diagnosis to my older son.  He knew we were taking his brother for testing and was very concerned.  He also turned out to have mis-information about autism so that he was assuming things that weren't true.  He thought autism meant that kids would never learn to talk, and they would get to have an iPad.  I did not realize this for a while, even though he was asking me every so often, when we would be getting an iPad. 

 

But I think it is a different situation, it is fairly obvious my son is doing some things that come across as unusual, and it is helpful to other kids to know that the reason is he has autism, and they can still do things with him and things like that.  But we are not at a point where my son is noticing anything. 

 

Part of what happens -- people like me are very open about the diagnosis, b/c it is obvious.  Then there are a lot of people, where I know their kids have an autism diagnosis, b/c they have shared it with me privately, but it is not public knowledge.  And that is because -- it is not obvious with their kids, and they have a preference to keep it private.  Which, I think is very understandable.  But the result is that, in my town, if you say "autism" then children will think of kids who are more like my son, and that is going to be hard if it is the same word, they do not realize how very broad the word "autism" is.

 

So I do think I would try to share a lot of information, b/c I do think it is easy for kids to associate "autism" with one child (my older son knew a boy who had an iPad and he talks with his iPad, and so he thought every child with autism would be that way), or only with certain characteristics, and then it is like -- how do these kids fit in with that?  I think I would look for a role model like Temple Grandin or John Robeson (or somebody -- I would look) and talk about how different autism is for different people, and nothing about them is going to change to become more like another child who has autism. 

 

What is so odd with my older son, my younger son was talking at the time.  But he thought, apparently, he would quit talking and get an iPad.  He also really wanted us to get an iPad, he was pretty disappointed when he realized we were really not going to get one.  Because "all kids with autism get to have an iPad" happened to be a deeply held belief he had.  He was in 2nd grade when he thought this. 

 

But I also do not know -- when the right time is, or how to bring it up.  I think I am in a position where I will just be adding some information as the time comes, and the time when it is going to be something for him to come to terms with is far in the future.  I can more share how it went when we were telling my older son about his little brother. At the time, I really wished that a broader spectrum of kids shared their diagnosis, because it would have been a lot easier for me in explaining it to my son.  But, now I can really see why people make choices they make.  But at the time I thought it would have made it a lot easier to explain to my son. 

 

   

[IsabelC]

I would advocate complete openness unless there is a compelling reason against it, because if you tiptoe around the subject you risk giving him the idea that autism is shameful, terrible or taboo.

 

Knowing that something is up but not being told anything is likely to be more anxiety triggering than an age-appropriate and matter of fact explanation. "You have autism. That means that your brain is wired a little different to most kids. You're great at some stuff but there are some things you might find a bit harder, so we're going to do xyz to help you." shouldn't be any more difficult tell a child than, say, "You have sensitive skin. That means we need to be careful about sun protection and not using certain chemicals on your body." At Peter's age, he probably doesn't need to know a huge amount of detail, and of course you'll continue to emphasize that everybody is different, we are all wonderful and special, and we all have strengths and weaknesses. Later on, when you judge that he is ready, you can tackle the more difficult aspects, such as how best to deal with the inevitable discrimination he will face at some point.

 

The problem with the 'only tell when they ask' policy is that not all kids will ask. As a person who was diagnosed in my late 30's, I can tell you that I knew I was very 'different' from the age of 4 or 5. I suffered significant distress for many years due to ASD with associated depression and anxiety, but I never asked my parents.

 

Also, if you don't tell him while he's young, you will then have a potentially difficult decision about when is the best time to tell him. The longer you wait, the bigger of a deal it will feel like, and if you leave it too late - or if he inadvertently finds out from somebody else - you will be met with recriminations on account of having kept it from him.

 

One caveat: if you are feeling an intense reaction to the diagnosis, take a little time to get used to it yourself (and debrief with other adults) before you start discussions with your child.

[fairfarmhand]

I'm glad you finally got some answers.

 

I bet your feelings are in a whirl. Give yourself some time to process.

[wendyroo]

One caveat: if you are feeling an intense reaction to the diagnosis, take a little time to get used to it yourself (and debrief with other adults) before you start discussions with your child. 

 

The writing has been on the wall for a very long time.  If anything, I am feeling relieved.

 

Part of me knew Peter wasn't normal from the time he was a couple months old, even though he was my oldest and I didn't really have anything to compare him to.  The pediatrician took my concerns seriously and we rules out physical problems.  He was a very, very sensitive, unhappy, high-needs baby and we just struggled through one day at a time and hoped that he would outgrow it.  He didn't.

 

My husband and parents and in-laws had all gently blown off my concerns when Peter was a baby and then a toddler.  They said I was just a first time mom who didn't know what to expect.  Their tune started changing as he turned 3 and then 4 and then 5.  He didn't make eye contact, he was scared of The Very Hungry Caterpillar, he got older and older and he still couldn't ride a tricycle or go down a slide, we had to pull him out of preschool because he was frequently crying and being bullied.

 

I've suspected an anxiety disorder for years now.  ASD seemed likely when Peter was 3 and almost certain when he was 4, now that he is 5, the only difference is that it is written on a piece a paper.

 

Do you have any suggestions for what words to use to talk about the diagnoses with him?  I don't know to what extent he understands that he is different.  When he is socially awkward with other kids and they shun or ignore him he seems largely oblivious to it all.  He obviously knows that he is scared of a lot of things, and I think he realizes that many kids are not scared of those things, but up until now I have just talked about how different brains work in different ways.  He struggles in SO MANY ways every day...would it be beneficial for him to know that he he is unlikely to outgrow the struggles and that his brain chemistry will probably fill his life with difficulties?

 

I'm worried about the word disorder.  Intellectually he is very advanced...he knows that prefix.  What does it do to a kid to know that his parents and doctors all agree that his order is "made negative"?

 

Thanks,

Wendy

[Lecka]

First, I don't like "disorder" either.  I don't think you need to say "autism spectrum disorder" -- you can just leave out the word disorder.  If he is likely to see it on his own right now or hear the term -- you can talk about it.  If he is unlikely to hear the term -- I would leave that out for his age.

 

I think it is very early to say his brain chemistry will fill his life with difficulties.  Have you started therapy or accommodations?  I don't think there is any reason to jump to a conclusion that his life will be filled with difficulties. 

 

None of us can predict the future.  None of us can know how our kids will change and grow. 

 

There is not a certain trajectory that anyone is on, b/c of how they are when they are 5. 

 

I think, too, maybe it is enough you talk about the present.  I think it is a young age to talk much about the long-term future. 

 

I think it is enough to say you will do what you can to help him when things are hard, and he will always be loved by his family.  Those are things you can say about the future and know they are true. 

 

But depending on how far you have gotten in the process -- there is a lot of reason to have hope that you will be able to find some things that do help to make things easier for him, and reasons to hope that some things will get easier for him as he gets older.  He is not going to be frozen in time in any way, you do not have to worry about that. 

[Plink]

I can't imagine hiding that kind of information from my child. It is so freeing to be able to explain their problems rather than pretend they don't exist. And what happens when grandma accidentally comments about autism in front of him assuming that he knows? Yikes!

 

Nope. I don't lie to my kids.

 

How did I explain it? "I bet you've noticed that it is hard for you to xyz. Want to know what we've just found out? Your brain is wired different. It is called Autism, and I am so thankful that we can now get some new resources to help you..."

[sbgrace]

I waited until my son realized he was different to tell him. I felt at that point it was beneficial to have a name for what he had already realized. This was 9 fwiw. I don't regret waiting.

[Lecka]

What is nice with my younger son, we know two boys his age who are on the spectrum.  Whenever the time comes that we are talking about it more, we can mention his friends T and D.  Then he knows even more kids, who are not necessarily his friends, but kids he knows. 

 

When we were talking about it with my older son, at the time, he only would think of this one boy, and I wished I could tell him about other kids, but we did not know any.  Now he knows more kids, too. 

[Tsuga]

It's official; today we received Peter's official diagnoses of high functioning autism and unspecified anxiety disorder.

 

Do I tell him?  How?  What?

 

He, obviously, knows that we saw the "talking and playing doctor" last week (when the evaluation was done), but I didn't tell him that the visit was any different that any of the other times he has seen a therapist/counselor/psychiatrist.  He did not know it was a testing session, so he is not anticipating any "results", so I don't have to tell him anything...I'm torn as to whether telling him would do good or harm.

 

Thoughts?  Advice?  Experiences?

 

ETA: Peter is 5.5 years old, in case you can't see signatures.

 

Thanks,

Wendy

 

I learned as an adult that my mother had me evaluated for autism when I was a child but the doctor gave her some tips and said there was no program for kids doing as well as me, so don't bother, just help me do my best. I was fine, I was an individual. At the time, Asperger's was not on the menu of diagnoses they'd give, and people were much more hesitant to give out such diagnoses due to greater stigma. So it would not have been accurate to give me a diagnosis of autism.

 

As an adult, I realized I met a lot of the criteria for Asperger's from articles about it. But like many people, I don't feel I have a disability because I feel I function well in life: http://archive.wired.com/wired/archive/9.12/aqtest.html

 

I am glad my mother was patient with me. I am glad she had an idea about where some of my behaviors were coming from. Very glad.

 

I am glad I was not told she'd had me evaluated until I was much older. I also was not told my IQ scores until much later.

 

I don't think I would have done as well with a label or a number attached to me.

 

This is my personal opinion based on my individual experience. I understand why others have different experiences and needs. Every kid is different. Just wanted to share my own story.

[Jennifer-72]

I have always been open with my son about his autism dx.

 

At around 5 is when I told him that his brain works differently then mine. We talked about things that were hard and easy for us both (obviously being 5 with autism and nearly non existent self awareness I had to guide a lot of that conversation). I also mentioned that was true for everyone. I went on to talk about how lots of things he found easy were hard for me and visa versa and how it would be a good idea for us to work together to make both our brains stronger. That approached has served us well. This past year ds is just shy of 10 we worked through the kids survival guide to autism.

 

Just on my phone and should get back to work, hope that makes some sense!

 

J

[IsabelC]

 

Do you have any suggestions for what words to use to talk about the diagnoses with him?  I don't know to what extent he understands that he is different.  When he is socially awkward with other kids and they shun or ignore him he seems largely oblivious to it all.  He obviously knows that he is scared of a lot of things, and I think he realizes that many kids are not scared of those things, but up until now I have just talked about how different brains work in different ways.  He struggles in SO MANY ways every day...would it be beneficial for him to know that he he is unlikely to outgrow the struggles and that his brain chemistry will probably fill his life with difficulties?

 

I'm worried about the word disorder.  Intellectually he is very advanced...he knows that prefix.  What does it do to a kid to know that his parents and doctors all agree that his order is "made negative"?

 

Well as you know, no two 'autistic' kids are the same, so obviously ymmv. But for my two who are on the spectrum, I actually combined the news of their diagnosis with a lesson about labeling. I explained the meaning of the word spectrum, and that humans can fall on a spectrum in many different ways. Physical examples are easy for kids to understand, e.g. there is a range from no hair to super long hair (my kids loved looking at pictures of people with extremely long hair), and people can have skin tones ranging from very dark to very light. Just like our bodies vary, the way our brains work varies. And just like all skin colors are OK, different brains are OK. Some children are interested in hearing a list of famous people who have (or are thought to have had) ASD. I also explained that while some people might mistakenly think that a label means a person is 'less than', or even use the label to be unkind, we can also use labels as a shorthand way to figure out how each person can be helped to be and feel their best. I don't use the word disorder, I just say that some people are 'more autistic' than other people, but if he hears that word and already knows what it means, you could just say that in this context it means difference or challenge or whatever you think fits better. I wouldn't worry too much about discussing his long term prognosis, unless he insists (most 5yos can scarcely even imagine being 7 or 8, let alone wonder what will become of them as adults). Besides, if you look at the progress that has been made over the last couple of decades and anticipate similar improvements in the coming 20 years, it's a good bet that as an adult he will be achieving far more than you'd dream of now. 

 

ETA - what I outlined above was actually several conversations on different days.

[Crimson Wife]

DD was not-quite-3 when she got the autism diagnosis and we've always been open about it. I think at this point (almost 6) she knows that autism means she's still learning to talk because that's the way we tend to frame it with NT peers. The most obvious impairment is the speech & language delay and I'm pretty sure she has realized most kids her age (or even younger) talk better than she does. I believe in keeping the explanation simple with younger kids and saving the in-depth explanation for later.

 

My older kids liked "All Cats Have Asperger's" when their little sister got her diagnosis of HFA. I explained to them what the developmental pediatrician had said about the challenges of Asperger's and HFA being similar except for the speech & language delay of HFA.

[Storygirl]

I'm reading the replies with interest. DS10 was diagnosed earlier this year with non-verbal learning disorder. We have not told him yet.  I found it interesting that he went through extensive testing with the NP and never asked why he needed to be tested or what the NP said in the end.  He also has ADHD and sensory processing disorder and an anxiety disorder. We talk about these things in a this-is-just-how-life-is-for-you way. He knows his medication helps him focus, but he never asks why he can't focus the way that other children can. He knows he is the only one of his siblings to go to OT, but he never asks why it is something just for him. He seems to not be especially self-reflective. He doesn't talk about feeling different from others. I'm not sure that he realizes that he is different in some ways. I'm not sure that I want to point that out to him.

 

I don't want to keep anything from him. This is information about himself, and he deserves to know it. But he doesn't seem to need to know right now. I've been wondering whether to tell him anyway. It's hard to know what is right.  

 

Wendy, somehow it seems right to tell your son that he has autism, since it is having such an impact on his daily life. Can you tell him in a kind of low-key way: "The doctor told us that you have autism. This isn't an illness like a cold; it is just a way of describing the way that your particular brain works. Now that we know about autism, we can look into better ways to help you learn certain things. I'm sure we will talk about this many times in the future as we learn more about it. It's not something to worry about, but just something that you should know about yourself." I don't think you would need to lay out any details unless he asks. But this way, going forward, you will be free to talk about how things that you do with him are because of the autism, and he can slowly build an understanding of what it means. 

 

I don't know if that would work for you, but I think it is the approach we will take with DS.

[srs]

Rather than one big conversation, my daughter and I have had a series of small conversations about her cerebral palsy and its associated diagnoses and what that means for her. I want her to know that I am not hiding anything from her, and I think it helps her to know why some things are harder for her, and why she gets so worn out, and why she goes to OT, etc.

 

She just did a neuropsych eval, and we get the results tomorrow. I plan to share what is appropriate with her. She wants to know, and I think she is more worried about the unknown than the known.