(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… 🙂
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Heart breaking...I've always had the severe non-verbal,tantruming, picky eating, no receptive language Autistic child. I frequently look at other autistic kids and think "if only he were like that kid" (never mind the out right jealously of "normal" kids). But to have known another side to your child and to see what he was becoming and where his potential was going...Ugh I can't imagine the frustration. The day Johnny got his shots he said Daddy for the first and last time (my husband didn't even get to hear it) I hold on to that bittersweet memory and relive it often. The crap we go thru! I HATE AUTISM!
My heart goes out to you. You can't put the blame on your self, like many of us often do. I don't know what caused your son's regression and I am not going to pretend I do. What I do notice is that you openly talk about your son's bowels movements. The toxin's that stay in the body from constipation can cause autism like symptoms (I am not staying this applies here, it may or may not). There is nothing unsafe with cleaning out processed food and trying to heal the gut. I also know your son is a picky eater which can be a bit of a challenge, but may help him.
Best wishes Nicole (The Autism Puzzle)
oh this is heartbreaking... I am so sorry to hear what happened but am thankful to see that you and your wife still care and fight for your amazing and precious boy.
Regressions can be the hardest and scariest things to go through... David is in the middle of a regression currently. Started about a month ago and he just keeps slowly slipping away... I'm scared to be honest because though he's had more than one regression since this whole journey started (first one was around 9 months and was the hardest and most severe to deal with...) this one is looking worse than the others (save for the first one...) and I don't know what to do to stop it or if I even can do anything to stop it.
Thankfully he has finally been given a Autism diagnosis (I say thankfully because at least we now know why all this is happening and someone to turn to for help) and will hopefully soon have things and people that can help him and us. One of the things I am hoping for is a service dog. I have heard that though they can be a lot of work themselves, they can work "miracles" for an autistic child and the family.
My nephew has Autism, and my sister had extensive allergy blood test done to determine exactly what foods/substances he is allergic and sensitive to. I know you aren't as open to bio-medical treatments as you used to be, but I can tell you from personal experience that by eliminating all of the foods that he is allergic to, it has really helped him. He can speak, he tells us what he wants, he points, and he interacts. This is much better than just trying a blanket diet change, like GFCF, because you are only going to be eliminating the things that his body doesn't process properly, without eliminating the stuff that his body needs.
Good luck!
sorry - forgot to mention that it is the IgG and IgE levels that you need. See below: http://www.rmalab.com/index.php?id=18
My son is 13 now. Dairy is a huge problem still. Yeast over growth can really destroy his digestive system. My son's spitting has gotten really bad and I Am trying to deal with it. Try Candex for Yeast.
I know you've tried a lot of things so if I'm suggesting something you've already done please ignore me! I know how annoying the "have you tried....?" is. I have one with Aspergers and one non verbal lower functioning on the spectrum kid. Anyway, we're starting GAPS diet. Given the foods Kyle is drawn to I think it could be worth a look. Many things started to make sense as I read it and I've seen a few of my friends have success with it. It took me a year to decide to start but I'm cautiously optomistic. Again hope I'm not annoying you but it did seem you were open to ideas ;)
It was reading Mikeys story, except for the spitting part. climbing, running, putting crap in his mouth, non verbal, eating the wall, gnawing on everything, drawing on the wall, it seems to never end
Thank you so much for sharing this! I also have an 8 year old son with Classic Autism topped off with Epilepsy, ADHD, pragmatic language delay... He was an early regressive kid and has over the past 7 years had several more regressive periods. I feel guardedly sorry that my son is verbal and can sometimes hold a fairly decent conversation (I know it is a strange thing to feel sorry about but...) Although our journeys and struggles are very personal they are also universal. As I try not to live in the "I wish" place as much as I used to I still visit there often. Thank you again for sharing this very special story.
I've been a line therapist for several children on the spectrum and recently joined a team on a wonderful boy facing regression. While I'm no licensed therapist, our team was able to make some conclusions (solely based on our observations in working with him everyday). Our observations were that he was stuck in a rut--so to speak--he had the same therapists for over a year, they knew his limits so they stopped pushing as hard. It was wonderful that he grew comfortable with someone other than immediate family, but he was just a human being. We all get stuck--with or without autism. Myself and one other therapist joined his team and he is starting to make great strides again! Everyone interacts differently and bring different ideas to the table. I don't know what your experience with therapy is, but from that perspective, this is something I have seen similarly. Hope I wasn't too far off and I wish you the best! Oh, and I'm so glad I found your site.