With all the awareness that’s been raised over the past several years about autism, many people now realize that there are several forms of this organic brain disorder- gradations, if you will. Autism is a spectrum, including Pervasive Developmental Disability – Not Otherwise Specified (NOS) on one end, Asperger’s Syndrome somewhere in the middle, and severe, non-verbal autism on the far end. They have symptoms in common enough to group them as autism spectrum disorders, but different enough to separate into different diagnoses.
Mental illness – another organic brain disorder – is no different. No one is simply “bipolar” or “schizophrenic”. It’s usual for someone with a mental illness to have their diagnosis refined over time along the spectrum as symptoms evolve or, as is often the case with children, symptoms are better defined with age. And, with children, it’s not uncommon for a child to be thought to have one of several types of organic brain disorders, and have that diagnosis revised over the years.
How could this be? It’s relatively easy to understand, if you understand how often the symptoms of one issue overlap with the symptoms of another. Let’s do a little experiment. I’ll list some symptoms, and some possible diagnoses, and let’s see if we can match column A with column B:
- Difficulty or inability to read social cues
- Impulsivity or inability to wait for a turn
- Easily agitated
- Angry outbursts / tantrums / rage
- Trouble staying focused
- Repetitive behaviors / rituals
- Language or speech delays
- Inappropriate laughter or crying
- Odd or irrational speech
- Early Onset Bipolar Disorder
- Attention Deficit Disorder
- Early Onset Schizophrenia
Ding! Time’s up. Which one of the brain disorders do the symptoms suggest? The answer? All of them. All four of these illnesses can have any or all of the symptoms listed. When you wrap your head around that, you realize what an amazingly inexact science psychiatry is.
This is our history with Tim. Tim was first diagnosed with PDD-NOS, an autism spectrum disorder, at age 4. He was treated at one time for ADD (I’ll blog about that sometime – what a nightmare). His diagnosis evolved to mood disorder – NOS, to bipolar disorder – NOS (NOS basically stands for “we don’t know yet”), then Bipolar Disorder Type II, Then Schizoaffective Disorder. And, since he’s only 15, I don’t begin to think we’ve nailed down a diagnosis yet.
WARNING: MINI RANT BELOW
This is what aggravates me about people like Jenny McCarthy, who proclaim they have “cured” autism. I would bet her $1 million that her son has never truly had autism – that was just his primary diagnosis. People like her are dangerous – they give false hope to parents who are struggling to help their children who may have some actual brain disorder, and, I feel, damage the cause of those truly trying to find a cure for and help parents dealing with autism in their families. I feel confident that, someday in the future, Jenny would be writing me a check, if she’d take that bet.
When you boil it all down to its most base form, the diagnosis isn’t really all that important. It’s not like you’ll wake up someday and say, “wow, my child is schizophrenic – now I know what to do!” The diagnosis doesn’t change the child, his or her symptoms, or how they must be managed. But having as accurate a diagnosis as possible does serve a purpose: for us, it got us the services we needed to get appropriate care for Tim, qualified him for specialized schooling through the school district, and got our insurance company to cover some very expensive medications. None of these things would have been possible without his current diagnosis. It’s been a shell game – lifting a new shell every time the symptoms seemed to evolve, to find a new doctor, a new treatment type, a new medication, and a new DSM-IV to help line up the support we’ve needed. Right now the ball is under the “schizoaffective” shell, but I have no illusions that it will remain there the next time we rearrange the shells.
Now I understand much better your outrage about Jenny McCarthy.
Not that I did not see/get it before.
What gets me is that normally rational people listen to her. I understand keeping hope, trying ideas, etc, but come on, people. She may be bright, and I'm sure she's a good mom, but it's a stretch to pin your medical hopes on a woman who's claim to fame is she has a nice rack that looks good in a centerfold.
not only that, but it is very easy to do everything she does when you have endless money and clearly lots of help considering how much she tours to promote all this. i did stick to that diet consistently for 1 year and sad to say, nothing.
She never says she "cured" autism. She says her child is recovering or has recovered from it.
Parents aren't "listening" to Jenny McCarthy, they are cheering her, because she is famous enough, for WHATEVER reason, to be able to say out loud, in the public forum, what thousands and thousands of parents had been trying to say for a decade or more: Vaccines hurt their child. Diet and other therapies helped.
I don't believe (for a second) that doctors have the diagnosis or treatment games all figured out. But I do get tired of people saying "If the diet helped, he didn't really have autism." Or "If the diet worked, he wasn't really that bad."
Actually, the only people I've known who didn't see improvement didn't do the diet correctly, or for very long. So it could so easily be turned around, couldn't it? "If the diet DIDN'T work, he didn't really have autism." Or worse.
But that would be very narrow-minded of me. My experience has been very limited. I believe there are probably hundreds of manifestations of these four main diagnoses, all with different causes and triggers and possible treatments. Parents should have access to all possibilities. And we should never be knocking each other down for making different choices.
Jenny McCarthy's book is entitled, "Louder Than Words: A Mother's Journey in Healing Autism." So I stand by my assertion that she asserts she has cured her son's autism.
That aside, I agree, we should not knock others down for making different choices. I only speak up about knocking down Ms. McCarthy because I feel she is DANGEROUS.
Autism, like bipolar disorder or schizophrenia, is a life long, organic brain disorder. You can't HEAL that. You can only manage the symptoms.
Reading through your older posts and wasn't going to comment on this but when you mentioned Jenny mccarthy I had to. That women makes me so mad, she claims vaccines caused her son's autism and that through treatment (most of which is either useless/a money sucker or else actually dangerous) autism can be cured. What makes me mad about this is that through her advocacy of anti-vaccinations she's helping further mini epidemics. We're seeing kids getting diseases we though had been eradicated in first world countries. Also her claims of how to cure autism are angering because they cause parents to turn away from treatments that may actually help the child in favour of medically useless ones.
I love this.