Now Reading: The Story Of My Son’s Major Regression…. Autism On Top Of Autism?

The Story Of My Son’s Major Regression…. Autism On Top Of Autism?

(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… 🙂

A story about

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Written by

Frank 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” :-).

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35 People Replies to “The Story Of My Son’s Major Regression…. Autism On Top Of Autism?”

  1. I agree. Fuck Autism. God Damnit. I miss my little girl. Why? She is the most beautiful 3 year old I have ever seen and can't enjoy her life and be happy because of this bitch we call Autism. I constantly worry about who will take care of her when I'm no longer here on this fucked up world. If I knew what caused it I would destroy it because it has destroyed our lives. Good luck to everybody fighting this battle that many don't understand. I would give my life to my daughter right now if that were possible. I got to live and experience many wonderful things. I wish she could have the same because I wanted to give my daughter the world. I will never forget telling her how much I couldn't wait to talk to her when she was small enough to fit in my forearm. 3 years later, I am still waiting and beginning to think it will never happen. I dream that she is talking to me and want to go back to sleep to have the same dream after waking up and realizing that it wasn't real. I love her more than anything and always will. As for Autism, go to fucking hell and burn you fucking bitch.

  2. Anonymous

    Just found out my kid is autistic (24 months). He's made big strides the last 3 weeks since I got intense with him. I feel guilty because my wife caught it early while I was rather in denial. This has almost ruined my marriage.

    ABA starts in a few weeks.

    I'm scared to death. With the strides (reading, counting, shapes, saying "I lover you"), he also has be stimming more. He's slapped himself a few times.

    Found out mental disorders run on my dad's side and I was probably autistic (well, still am, but my dad smacked me into controlling it). That would have been good to know beforehand.

    Piece of shit fucking autism. Hes the most perfect thing in this world and doesn't deserve this.

    It's goddamn depressing that my life will be divided into two periods: average life and autism awareness guy.

    Fuck autism, goddamn. Son of a fucking bitch.

  3. Anonymous

    The one thing I have found that helps, it to try to put myself in my 6 years old's shoes. Not that I always can, but it helps me to think this way and keep trying. And the more I understand him, the more I can be compassionate when he's a complete mess and I just want to run screaming. And I do think it's helped him. He can feel that I am listening. I can tell him I'm listening and that's it hard and I wish I could help.

    For him…The world is over stimulating, people say confusing and garbled things, words don't always make sense, hearing is a bit difficult, I have little impulse control, no one is happy when i make amazing drawings on the wall, I'm afraid of shadows and monsters, but I can't share that with anyone and I'm all alone, trapped without a way to share my anger, disappointment or fear. It would seem to me that people ignore me, and don't connect so I am withdrawing.

    Now if you took a typical kid and exposed them to that kind of daily upset, and they could not get comfort from another person, or feel safe or understood. Well they would loose it too, wouldn't they? We all would…

    1. Anonymous

      The tearing up the book. Might he be unhappy that things have changed? The one help we got was a therapist that taught us the Kasden method where we praise every behavior we like and prompt once – the poitive opposite (if running–then say –please walk) ignore anything we don't (except verbal or physical aggression). It helped a lot. I wish all of you luck!

  4. Anonymous

    I hve a 5 year old son who has a chromosomal disorder that can have "autistic-like" symptoms and he was given an autism diagnosis at age 2. I'm not sorry about this because now he is getting ABA through our state waiver program (SC). He has never had a regression "knock on wood" but then again I know the cause of his autism, his chromosomal disorder. His most notable autism symptoms are stimming (flapping & turning things over and over) and toe-walking. He is also mostly non-verbal but most of his other "symptoms" could also be attributed to his global developmental delays associated with his chromosomal disorder, one reason I fought his autism diagnosis initially. I won't claim I'm not relieved that we don't have to be a part of the cause of autism fight.

  5. Anonymous

    If you haven't, check out Barry Neil Kaufman, Options Institute, Son Rise, and other books he has written. Barry has a son that "had" severe autism.

    Autistic kids like everyone else are doing the best they can to take care of themselves. Autistic behaviors tend to be defensive mechanisms to cope with the sensory overload from constant bombardment. I believe a significant portion of the overload comes from the minds of everyone around them. All children are sensitive to the emotions of those around them, autistic children are even more attuned. Keep a sunny, positive attitude, heap honest praise, and be utterly honest with autistic kids, as they know when you are faking. They need love, not pity or despair.

  6. Genetic disorder? Has he been to a geneticist?

  7. Kyle's story sounds a lot like childhood disintegration disorder. Please don't blame yourselves. There is nothing that you can do other than what you are doing. It's so hard to parent our kids without placing the blame right on our shoulders. Sure, we screw some things up from time to time, but the facts are that autism is a huge mystery and we just don't know what is going on.

  8. I dunno what to say after reading kyle's story but I want to know what his progress…..I too have 305 yr old son who has speech delay though he has not been labelled Autistic by Doctors .He too has speech regression.
    I turned to Unani medicine and its helping my kid though the progress is slow but still better.its been only 15 days and I see 5 % improvement.

    I would just suggest you to turn to alternative medicines because they have shown really remarkable improvements in kids .you can google it.

  9. aspiegurl

    I was a picky eater after 4.5. I ate more foods in preschool than in school years. and I had mild destructive tendencies, which I didn't have before. The destructive tendencies went away and my picky eating has diminished some in the past six years and I'm thinking of putting myself on a low-carb diet after my birthday next month.

  10. Anonymous

    Ok, where to start. I have an 18 year old girl with profound regressive autism. She developed normally, with good receptive and expressive language, and was social, happy, musical, bright. At around 13months she began to disappear, very slowly. Over 4 years she lost all of her speech, and developed flapping, hand biting, rocking etc…In other words, autism claimed her. I have 2 boys, with no signs of autism, but she was way
    smarter than them as an infant/toddler. We did
    extensive ABA (via Univerity trained staff), Developmental Optometry, intensive SIT, AIT, modified
    her diet in accordance with diagnosed sensitivities (for years), hair analysis, bowel analsis, urine testing, blood and DNA testing, OT, ST..the list goes on. She is now
    non verbal, doubly incontinent, self abusive, aggressive, and almost impossible to keep at home for much
    longer. This is heartbreaking, isolating, devastating, as
    many of you know. There was no known major trigger, although she began to regress post a bad reaction to
    her MMR. There is a genetic predisposition in the
    family, yet it seems to need a trigger. Autism is shit.
    Some kids I know, came through so well with only a slice of what we have done, others did not. I wish you all the best. Don't stop trying, or give up hope. I haven't despite everything. And, no, we are not blessed, that
    crap makes me angry. Blessed to wartch our child
    suffer through every day?? Not likely. Those who believe that, have had too many benzo's, or simply live
    to far in fantasy to be taken seriously. I wish all of you
    the very best, you are all awesome parents. Hang in there. I live for better research, and perhaps a day when the areas of my daughter's brain, shut down for so long, are reopened.

  11. I am neither autist nor am I a mother of an autist kid. My interest in autism is very recent and has grown out of a somewhat purely scientific concern rather than real life experience, the latter is so far also very limited, so there is some chance of me being completely wrong. But still …

    It seems to me as if you actually DID give an answer for what has caused the regression. You are writing: "but once he got into Early Intervention he was making HUGE strides and MASSIVE progress. Kyle was an ABA machine."
    "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!!"

    Don't you feel somewhat uncomfortable with the hugeness of the progress Kyle made in a relatively short time, and doesn't the use of the word "machine" expresses the concerns you had at that time already, and now even more so, pretty well? I know, part of your son's rage when ripping the book up might just be the normal destruction impulse all young children have, and some of the rage might be prompted by an incident that has nothing to do with autism, another part could be because of his frustration for not being able anymore to do what he used to be able to do. But how about YOUR OWN reaction to the event? Couldn't it show that you think there is still something else to it?

    If this comment appeals to you, your own ideas might also show you the way how to better tackle the whole situation. If it doesn't make sense to you, please just forget about it, and if possible, completely.

    1. Anonymous

      Dad, the regression could have been linked to increased sub clinical seizure activity. Just a thought.

    2. If only it was that easy. I'm sure you mean well, but don't you think that if the solutions were that easy, they'd already be used? My son is 16 (not autistic per say, but VERY similar type issues that made "typical" a dream word), and for 16 years, I've obsessed from the moment I wake up to the moment I go to bed on how to help him. I have a knowledge of the brain I never expected (nor wanted) to have, I read scientific journals–most beyond my intellect or understanding–in hopes of finding the right neurotransmitter to tweak, and I've spoken to every doctor, scientist, mother, therapistwho might have something to share. If the solution were available, I'd be on it. As would all of my friends who are autism moms. This all goes so far beyond treatment. Science hasn't caught up yet, and psychology is useless. Thank you for caring enough to try to help, but you should understand that most of us have tried it all–made ourselves sick and crazy in an effort to fix our children–but to no avail.

    3. Ahem. I am late to this conversation, so may I just say, "Bite me." Go have a kid with autism and then get back to us.

      You left out the part about Refrigerator Moms.

  12. Anonymous

    Your description of Kyle's autism in the early days was just like ours. Jack got the full tilt boogie Autism diagnosis (he was never PPD) at 28 months, but progressed like a rockstar once he was in early intervention. Colors, shapes, counting, pointing, and WORDS! HUNDREDS OF THEM! AND SENTENCES! At 40 months he caught his first real cold with a nasty upper respiratory infection that turned into Roseola and regressed for a brief time. Four months later, while traveling he caught another URI, and tanked. He was up and down for many months, but gradually he spiraled and stayed down. Now at 8 years old he says "yea", "mo" (more), and "mom". That's it. The last full sentence I can recall him saying was "Look Mommy! It's fish!" while pointing at a fish tank. He is in a diaper at bedtime, he chews everything he can get his hands on, he's stimmy, he wanders aimlessly, he is well and truly autistic. He can't be left alone. I get your pain, there are days my hubby and I just hold each other and cry. But, most days, once the poop is washed off the walls, and I've dug the 19th crayon out of his mouth, he does something that makes me smile and laugh. Thanks for writing such a great blog. My husband is the stay at home Autism dad at our house, this is so completely relateable for him.

  13. Anonymous

    Did he have an mmr shot around the time the regression started? My kiddo is almost two and I refuse to give him the shot. Some say it causes autism some say it doesnt. With kiddo already being autistic Im terrified to give him the shot and possibly add insult to injury. Im sure ill catch a lot of hell for this but thats the way I feel.

    1. Not true Sarah- 7/29/15 Congressman Bill Posey Asks For CDC Whistleblower Hearings; CDC Scientists Destroyed Documents to Hide MMR-Autism Link

    2. Sarah

      There have been a number of extensive studies done which have conclusively proven that the MMR vaccine does NOT cause autism, or a regression. There are, however, real dangers to your child's health/life if they contract measles etc. obviously it's up to you, but my eldest has autism and I have fully vaccinated my younger two

  14. spinning glow sticks

    I feel like this is what is happening to my son! He is 3 and was diagnosed with pdd-nos going on a year ago. But it seems now he is doing less and less of things he already learned. He was potty trained and now he is having more accidents then non accidents, he use to talk about everything and now some days he dont talk at all he just makes sounds. he use to not have an issue with putting things in his mouth now everyhing goes in his mouth. He cant even walk thru a store anymore without sitting on the floor or crawling. He is no where near being what I would consider servre yet but i fear thats where we are headed. but I have one thing on my side he is verbal! I look forward to following your story!

  15. Do you think because you just recently have been diagnosed with seizures that they could have been "lurking" in the background. We see regression in Chris when he is having subclinical or abnormal brain waves. We just got news that he has issues in his sleep while not seizures he is not going into Rem. This can have a huge impact on his learning/behavior.

  16. Elizabeth

    I have 5 year old boy/girl/boy triplets, two of whom (the boys) have autism. One of my boys has followed pretty much the exact same course as your son. He was diagnosed with PDD-NOS at 22 months, made significant progress before even starting ABA, and then from 3-5 has been in a never ending regression. I often wonder about biomedical too. It's mind boggling and heartwrenching.

  17. I just found your site and it's so nice to see something point blank and not rainbows and sunshine! I'm sorry to read about your son's regression. Our son is not as severe – we have a hard time getting him to shut up, he's never had verbal problems. But I get so tired of all these autism pages talking about how blessed the people are to have their autistic child. Really? I'd change my son in a heartbeat! I don't want him to be this way. Nice to find a page by a parent that doesn't talk about how autism is a blessing.

  18. Anonymous

    One thing for sure, that GFCF diet wouldnt cause any regression.. i know you said you pretty much given up on trying to find out what caused it but i talked to several doctors about it and they all said it would be the one thing i could try and it would never hurt him. (i know i dont trust many doctors) but i have an aunt who is an eye doctor and she does it with her boys.. so i am sure it wouldnt hurt him. as for other things… it could have been enviromental… i dont know..

  19. Anonymous

    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.

  20. 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.

  21. 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

  22. Anonymous

    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 😉

  23. 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.

  24. Anonymous

    sorry – forgot to mention that it is the IgG and IgE levels that you need. See below:

  25. Anonymous

    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!

  26. 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.

  27. 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)

  28. 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!