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

Dec 22, 2007 - 0 comments






In the last journal, I wrote a few words about if and when to tell your child about his/her diagnosis.  In general, I concluded it's in the child's best interest to be told as soon as possible.  I failed to explain how to go about it.  Here,  I will try to explain a process that I use to inform my own child.  She is now a young adult.   It's worked for me for about 18 years or so.   This is a continual procedure.  It is very time intensive.  It is also very rewarding.

1. First, free yourself of any guilt; you didn't cause you child's condition.  There's nothing wrong with your child.  Being atypical is not necessarily a bad thing.  Actually, 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.  This is not a tragedy.  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 my daughter's diagnosis of PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). 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.  Even if there were, would you really shoot it or drive it into you child's heart? I think not. It would destroy your child's sense of self.  There is no cure. 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".  You should, however look into some coping methods and strategies.   These are the most useful therapies.  These are aimed at helping your child navigate and cope with the world as we know it.  This acceptance became very real to me about two years after my daughter's diagnosis.  She was making great progress one year in a school designed for her special needs.  The staff and administration wanted to place her back in her neighborhood school designed for more typical children.  I fought to keep my daughter in the special program.  I managed to keep her there for an extra year. However, the very next year she was back in her neighborhood school without appropriate support for her condition.  They treated her condition as an emotional disorder.  She was miserable for three years.  One school accepted her atypical condition and worked with her.  The other school tried to work with her as a typical child.   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 is a continual process.  I'm still learning.  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.  This leaves parents asking "okay, I know what my child has, but what now?  What do I do?  Where do I go from here?"  To you professionals out there:  when you pass the football, point the direction to run with it.   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.  Some may be hard to locate, but it's out there!  

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.  I'm not ashamed to say it, but my best friends are autistic!   I remember taking my daughter to a conference retreat organized one summer that was run by and for persons with PDD/autism.  A teacher related this story at one of the workshops:  She was teaching a class of deaf children. One day they invited some deaf adults to visit. When the visitors came, one boy in the class looked really shocked and confused.  She asked him what was the matter. He then signed  "You mean I don't have to die when I grow up?"  He had never seen any deaf adults in his life so he thought that deaf people died before they grew to be adults!  By the way, I learned a lot of the same feelings are shared by the deaf community and the autistic community.

6. Go to step one.  Remember the shampoo instructions?  Lather, Rinse, Repeat!

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