Denial: When it helps, When it hurts

November 12th, 2012

Denial: When it helps, When it hurts

A parent’s guide to moving from denial to hope.

By Holly Bortfeld

Denial isn’t just a river in Egypt; it’s what a lot of parents cling to. It’s time to come to terms with the term, or diagnosis – AUTISM.

“My child has PDD or PDD-NOS, not autism”.
I hate to break it to you but PDD is autism. PDD-NOS is autism. Your child has autism.

What’s in a name?
The diagnosis “autism” has a long ugly past. An untreatable, incurable, hopeless, helpless, confusing disease, caused by bad parenting, defective genes, and was a near-death sentence as recently as just 10 years ago. We now know that isn’t true at all. We now know AUTISM IS TREATABLE. Recovery is happening. Every day.

PDD is Latin for “get no services”.
In many states, PDD is a disqualifying diagnosis for services. Call it what it is, autism. When you know what something is, you can treat it properly.

Why PDD?
Many doctors are afraid to, or refuse to, give the diagnosis of autism, no matter how severe a child may be, out of fear of scaring the parents, hurting their feelings or labeling the child. Schools also downplay the diagnosis to give less services and save money. The stigma needs to go. Autism is no longer the horrific, hopeless diagnosis that it once was. Don’t accept an inaccurate diagnosis.

Why Autism?
There are many benefits of getting the proper diagnosis:

  • You can’t treat it properly until you know what it is.
  • You will be eligible for more, and more appropriate, services.
  • If your child recovers, or no longer requires services, you can easily lose the diagnosis.
  • If you don’t get the Autism label for your child, then you are leaving it to everyone in the community to give your child the label of their choice.
  • The sooner you get a proper diagnosis, the less valuable time you lose, that you can never get back to help your child. Early intervention is KEY!

“But MY kid isn’t like YOURS!”
When my son regressed into autism, he was in a playgroup with 22 other kids. One mom said to me, “You should talk to my friend because her son is a lot like your son. Her son has autism.” When I talked to the mom on the phone, I was soooooo thankful that my son wasn’t exactly like her son, and therefore my son obviously didn’t have autism. Guess what? He had autism.

“My child only has mild autism or high-functioning autism.”
Guess what? It’s still autism. He or she still needs the same access to the same laundry list of tests and treatments that the more severely affected kids need. Also, there is actually NO SUCH THING as HFA or LFA, there is only Autism and PDD in the DSM-IV, no mention of HFA or LFA.

“My son stopped talking, pointing, looking at us, but boys will be boys and the pediatrician said just give it a year and see if he grows out of it.” Guess what? Yep. Autism.

Why the denial?

  • The unknown is terrifying.
  • We don’t want to believe it.
  • Our doctor advised us to “wait to see”.
  • It can’t be true. It just can’t be.
  • I don’t have time for this.
  • He’s not that bad. He’s just having a bad week/month/year.
  • I didn’t plan this into my life.
  • We don’t have autism in our family.
  • But my son was going to be a hall of famer.
  • It’s just a phase and he’ll grow out of it. Right?

No. Your child has autism. And the longer you wait to accept the diagnosis, the more precious time your child loses. Early Intervention is KEY!

But do not despair. There is information. There is support. There is hope. There is treatment. There is recovery. There are kids healing. Lots of them.

Is Denial always bad?
As the first step in the five stages of grief, denial is a common and even necessary part of the process. It is part of self-preservation – “if my son doesn’t have autism, he’ll be fine”. “This doctor wasn’t very nice and only saw my son for 10 minutes so I’ll just get another diagnosis”.

One TACA mom with who I spoke, told me that during her relentless pursuit, and receipt of, five separate diagnoses of autism, she needed to hold onto to denial to help her grieve. Not every parent may see autism as a reason to grieve or deny, but some may find it heart wrenching and scary.

The bad part of denial is that all it does really, is delay the inevitable and potentially even waste precious time for getting help, support and services at an extremely crucial age. It doesn’t facilitate the process of your child’s development and progress and is ultimately therefore, not beneficial. The experience of diagnosis and autism itself is highly individualized, but the end needs to be the same – GET YOUR CHILD HELP NOW! And as my mother use to tell me “Put on your big girl panties and deal with it”.

AA for autism
“To truly be helped, you must first admit you have a problem” is a tenet of Alcoholics Anonymous. It’s true here too. We can help those who are ready to be helped.

Patience is a virtue and TACA parents have buckets of it. We’ve all been where you are today, in denial. We will be here when you need us. For support. For understanding. For hope.

Hope

Hope outweighs denial. Hope is achievable. Hope is real. Hope heals.

My son got very sick back in 1998 after his MMR and stopped waving, pointing and talking very quickly. A light was snuffed out. He started banging his head, screaming 24/7, had caustic, blistering diarrhea running down his legs. As a parent it was heart-wrenching to watch and be unable to do anything to help him.

The doctors all told me the same thing: “Get rid of him because he’s never going to be able to do what other kids can, will only get more and more violent and you’ll have to put him in an institution anyway, so you may as way well do it while he’s still little and before he hurts someone.”

Sorry, what did you just say about my 2 year and 8 month old son who is clearly in pain and sick? Yes, that’s what several of the “best experts” in autism said to me. Really.

Thankfully, I never listened to them and got my son into treatment ASAP – diet, biomedical treatments, OT, Speech, Floortime and ABA. Today, he’s a lovely, gentle, awesome 17 year old who can talk, read, go anywhere, anytime without “routine” issues, snow skis, sings karaoke, and much more. Hope did that. And it can do it for your child too.

Recovery information:
http://www.tacanow.org/family-resources/family-stories-of-hope-recovery/
http://www.talkaboutcuringautism.org/video/autism-recovery-videos.htm
TACA Family Video
More at TACA’s Youtube Channel

Resources
Don’t Shoot the Messenger
I think My Child May Have Autism Includes how to get a diagnosis.
Plain Talk about PDD and the Diagnosis of Autism by Bernard Rimland, Ph.D.
Diagnostic criteria
ATEC
Childhood Autism Rating Scale (CARS)
First Signs
Early Intervention http://www.nectac.org/partc/partc.asp

GET CONNECTED
Autism Journey Blueprints
Parent Mentor Program
Find a TACA Chapter near you
LiveChat
Email or Phone

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3 Responses

  1. [...] know their children and very few of us have been in denial (ok… some!) Here is the issue – we basically listen to the professionals who tell us [...]