The Story Of My Son’s Major Regression…. Autism On Top Of Autism?
June 9, 2011
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Now Reading: The Story Of My Son’s Major Regression…. Autism On Top Of Autism?
June 9, 2011
(originally written & published on June 8, 2011)
In several of my previous Facebook notes I’ve alluded to the fact that Kyle had a late, large, unusual regression. Several people have asked for more details and asked if I had any clues as to what triggered the regression…
So here goes. But please note that this is the short version of the story. The long version has ALOT more details and is ALOT more painful for me to tell…
I honestly dont know what caused his regression… Or if anything caused it. And it wasn’t like your typical autism regression where your kid is developing normally has some words and then regressed at 18-24 months into a kid with autism.
We already had a kid with autism. Kyle was diagnosed at 18 months with mild PDD-NOS he was non-verbal, walking on his toes, flapping, etc, but once he got into Early Intervention he was making HUGE strides and MASSIVE progress. Kyle was an ABA machine.
And between 18mos – 36mos he made a TON of progress. Knew all his colors, knew all his shapes, knew all his letters & numbers (1-100!), could identify half the states on a map… All this by pointing. He was even good at pointing! He was also starting to approximate words with prompting “Cheer— eee—ooos” … And he was filling in the blanks on sayings…the cow goes … “MOOO”. And his receptive language was growing by leaps & bounds.
But SLOWLY between the ages of 3-5 it all went away and now we had a severely autistic kid who is constantly climbing, swinging, running, putting things in his mouth, spitting, etc.
It was like he had autism on top of his autism. I read about a severe form of autism called CDD (Childhood Disintegrative Disorder) and I thought maybe he had that on top of the autism…
Do I blame vaccines? Not really. Do I blame anything? I’m not sure, but between the ages of 3-5 is when we first started dabbling in biomedical treatments, first B12 injections, then the GFCF diet, then countless other things (that I’ll detail in another FB note)
Could one of these “miracle” treatments have caused a regression? I don’t know. As I said it was a VERY SLOW regression so there’s not one thing I can point to, but it just adds to the GUILT to think that maybe one of those things led to the regression. And it’s why I’m not so gung ho on trying new biomedical treatnents as I used to be. Deep down inside I feel like we got burned there.
And we’ve pretty much given up on trying to figure out what caused it. We’re just trying to move forward. But it still gnaws at me. Cuz when we see certain toys and certain books we remember what he used to do and what he was (is!) capable of.
I’ll never forget being at the diner after our first Autism Speaks Walk in June of 2006 Kyle at 37 months looked at a page in his Brown Bear book and said UNPROMPTED, “Flamimgo”
Now he just rips that book up!!
Any ideas / solutions / theories? I’m all ears… 🙂
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).