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When do I tell my child about his/her diagnosis?

Dec 22, 2007 - 4 comments






Certainly any child with a diagnosis, who is aware enough to ask questions about it, should be told.  Most of the adults with PDD/Autism I know seem to agree that it is good to know about their diagnoses as early as possible. They talk about  the peace they've found within themselves when they have a word that describes themselves.  Children need to work through the same "process" we as parents do to deal with the fact that they  have an "invisible" disability.  There can be many of the same reactions such as sadness, denial, grief, anxiety, blaming the diagnosis for everything. These are stages that both you and your child have to go through to come to terms with the diagnosis.  Just remember your child is going through the same confused feelings you are going through.  One main difference:  you have a word to describe his/her condition.  

If a child is not told his/her diagnosis the door is wide open for that child and everyone else to suggest their own diagnostic labels with terms like lazy, stubborn, stupid, retarded, and far worse.  Teachers may suggest these (and more) labels.  Your child's peers may even suggest more damaging diagnoses:   Cooties, Retard, Weirdo, Mental, etc. This only destroys self esteem and confidence.  Any child who can't do things exactly like most child will feel he's "disabled", whether he is or not.  Your child already knows he's "different"  and recognizes that.  The only question is, what will he call that difference? "Autistic" or "PDD"  is a lot better than "lazy", "stubborn", "weird" or "mental".

Having a name for a reading difficulty such as dyslexia can be a beginning of knowing what to do next, and  ending the self-pity.  If I had no legs I would have no choice but to realize what my trouble is.  But with autism, especially the higher functioning forms like Asperger Syndrome or PDD-NOS, it is harder to know what the problems are.   A diagnosis should explain an obstacle to be overcome rather than impose a judgment.  Also, naming that obstacle automatically carries with it a list of methods of overcoming it.   Now, at this point,  information can be shared with others with the same diagnosis.  

Kids can be pretty resilient, as long as they're told (as much as possible, given age-appropriateness and capacity to comprehend abstraction) that a "condition" is how things are, and that anything that they want to do or be is achievable, just by using different methods from what they have been trying.  It's almost as if learning you need glasses: kids handle that one a whole lot better than most adults!  

There may be downsides to telling kids who they are, but I can't think of any right now.  I think it is worth the effort.  Also consider this:   by denying your child  the opportunity to know as much as he can about how he works, you're denying him the opportunity to do as much as he can with what God has given him.  Another item to consider:   that all kids, come up with their own explanations for everything.  If we, as adults, don't give them accurate information, then they will absorb inaccurate information.  Information that could possibly be very detrimental.  They don't stop thinking because adults don't talk to them.  

From a child's point of view, I think, it can be a great relief  (rather than grief, sadness, or anxiety)  if the communication of the diagnosis is conveyed with warmth ("Hey, you mean I'm not stupid?").  My wish for the future is that professionals would recommend that parents tell, and  advise these parents on how to tell, maybe even help them.

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Avatar universal
by kwnursing, Apr 14, 2008
I think your advice is great and I would like to know more about this topic.  I am a nursing student looking for research sources.  I was wondering, since you seem to be so well spoken and versed on this subject, if you knew where I could find it?  I realize you posted this comment quite some time ago, but I am hoping that you still check up on it to see if anyone has responded.

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by Sally44, Apr 15, 2008
I would agree.  And you can just start by telling them simple facts, as much as they can take at their age.  My son is 7 and I just try to tell him (as things happen) that ..... or ..... is different for you because of ......  It can be hard to pitch it, espcially if there are communication problems.  But just have a go.
I would also add that siblings also need to know the diagnosis and how to deal with it as well.  I recently brought up the subject with my daughter (her brother is ASD), and she just broke down in tears sobbing 'why can't we just be a normal family'.  So I think I had left it a bit late to start giving her information.  But my reasoning at the time was that I didn't want to tell everyone else and my son be out of the circle so to speak.  But he wasn't really able to understand what I was telling him until recently.  But apparently alot of her school friends had been asking her 'what's wrong with your brother' and she hadn't known how to handle that or reply to it and she had been too embarrassed to talk to me about it.
I also have two siblings with other diagnosis, one with mental health problems and one with learning difficulties.  As a sibling I know that we need to be aware and included on what is going on so that we know how to react to other people when they are trying to tease, make fun, bully etc.  To be forewarned is to be forearmed.

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by mjthewriterdad, Apr 15, 2008
I have an a blog about HOW after this one.

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by mjthewriterdad, Apr 15, 2008
It's more of an ongoing process than a one time talk.

Since I'm getting a lot of questions, here is the gist of the HOW:  

1. First, free yourself of any guilt; you didn't cause you child's condition. This is not a tragedy.  Being atypical is not necessarily bad.   I discovered some advantages in having an autistic child!  She can sense things that I wouldn't.  She sees the world from a different perspective.  .  I think this is one reason why parents are afraid to speak or even think about it.   I admit there is some grief associated with not having the child you expected.  But realize that's not your fault nor is it your child's fault.  Once these things are understood, then you can start the next steps. I began this process here at this step about 18 years ago when I got connected with the Autism Society.  This was shortly after

This is a continual process.

2. Accept the diagnosis yourself.  Autism is a lifelong condition.  It's not something your child will outgrow.  I think this may be one reason a lot of parents won't tell their children about their diagnosis.  Somehow they believe with the right therapy, or the right medication, or given more time, the child will break out of a shell and emerge. There's no silver bullet. There's no wooden stake.   Accept your child as your child -- autism and all.  Rather than trying to make your child into your image of being "a typical child", accept your child as being an "atypical chid".  

   This acceptance is a continual process

3. Know enough about the diagnosis yourself.  How much is enough?  Learn enough for you to comprehend at any one time.  Then come back later and learn more. Get into books, magazine articles, medical journals,  conferences, support groups, discussion forums. Ask other parents, educators, professionals. Get on the Internet. Go to the library.   The more you know, the easier the above two steps get.  This also makes the next step easier.

This may be another reason why parents can't tell their children about their diagnosis.  They don't know enough about it themselves.  I think a lot of psychiatrists, psychologists and professionals who provide this initial diagnosis can improve in this area.  They tend to provide a written report of the assessment and leave it as the final product.  

Research occurs continually.  Professionals are continually learning more. You should too.  Articles are published daily in areas such as:   neuroscience, education, psychology,  medicine, occupational therapy, speech/language therepy, family challenges, and spiritual guidance.   There is a wealth of information.  Take advantage.

This is a continual process.    

4. Tell your child what you learned in step 3.  How much is enough?  See step 3.  As much as you think the child can comprehend at any one time.  Do this continually.  When you teach your child about sex education, you wouldn't seat the child at the table and teach everything in one sitting.  

5. Get connected.  You are not alone.  Share ideas and experiences together.  Join a support group.  Encourage (not force) your child to do the same.  Seek out and connect with the autistic community.  "Auties", as they call themselves, are all around the world.  Your child is not alone.   Spend some time in your child's world. It's a different world.  Share the joys and challenges of living in this different world.  

6. Go to step one: Lather, Rinse, Repeat!

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