Workshop report: Regression in autism

17 Apr

Simons Foundation has an article on their recent workshop on regression in autism. Here are the first two paragraphs:

A number of studies suggest that a subset of children with autism make significant social and language gains in the first year of life, and then experience a dramatic loss of skills. As infants, these children babble and make eye contact. However, those abilities suddenly disappear. This loss of skills is known as regression.

Some research suggests that these children may be a unique subgroup within the autism spectrum, distinct from those who show more gradual declines. The question of whether there is an abrupt change in only some children with autism has become an important topic for parents, clinicians and researchers.

Simons Foundation is the largest non government source of autism research funding. They are a private foundation. Their website and blog are great resources for those who follow autism research.

It is very tempting to pull a number of quotes from their article, but instead I’d encourage readers to go to the Simons website and read the article, regression in autism.

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21 Responses to “Workshop report: Regression in autism”

  1. Dee April 17, 2012 at 21:45 #

    None of this is news that hasn’t been documented in the last three years. It’s a good summary but I had hoped there would be something new. At least it may settle the question for those in the world of autism who have questioned regression.

    I think it’s also appropriate for me to point out that the many parents that I’ve talked to whose children regressed view autism as a disease rather than a disorder or brain difference. I hope you can see why. This is why we feel like autism has “stolen” our children. This is why we “fight” autism and get offended when we are told that by fighting to get our children back, we are not accepting who they really are. Simply untrue… I am fighting to get my son back.

    Much more work needs to be done. Particularly in terms of GI issues and mitochondria dysfunction that often accompanies regression. This is an area where a parent is forced to find alternative medicine to help their child’s issues.

    • Sullivan April 18, 2012 at 00:55 #

      “I am fighting to get my son back.’

      Respectfully, I would suggest you find a different way to word this, based on the arguments you seem to be making.. If you are “fighting to get my son back”, your wording assumes your son is gone. As you know, the child before you *is* your son. Whether on a different trajectory than you originally saw or not.

      “What we are looking for it to regain what was lost”

      If your view was that child was “normal” and then “lost” something, “regaining what was lost” *is* looking for normalcy. I don’t know what your opinions are, but I know that what you write is not consistent.

      Good luck with your quest to help your child. I would ask that at some point you really may want to take an objective look at your use of language. Ask yourself if you were injured, for example, would you want your loved ones saying that they want you back? Wouldn’t you say, “Hey, I’m right here!”

    • Shari October 24, 2012 at 08:18 #

      I really feel that you “dee ” should be more respectful. Your child is not sick or diseased. Autism is not something you should look to cure with harsh medication. I’m autistic so is my oldest and currently drs are beginning to suspect my two middle kids may be and we should watch our baby closely. I am proud to say that my family is perfect. We are exactly who god wants us to be and I wouldn’t change anything. Maybe your child deserves to be loved and respected as the person he is.

  2. Science Mom April 17, 2012 at 23:36 #

    This is why we feel like autism has “stolen” our children. This is why we “fight” autism and get offended when we are told that by fighting to get our children back, we are not accepting who they really are. Simply untrue… I am fighting to get my son back.

    It may be the way you feel but it still doesn’t make it right. Autism, regressive or not is still an alternate trajectory, not a stasis. To subject children to potentially dangerous and ineffective nostrums or procedures so you can “get your child back” and write about them on public forums, write books about them and parade them out at “conferences” is simply nothing that any child should have to endure. It’s all for you, not them and it’s selfish even if you have convinced yourselves it’s in their best interests.

    Much more work needs to be done. Particularly in terms of GI issues and mitochondria dysfunction that often accompanies regression. This is an area where a parent is forced to find alternative medicine to help their child’s issues.

    No, look at the literature. Parents aren’t “forced” to find alternative medicine to “help their child’s issues”; they do it because they don’t want to be told that their child doesn’t have a pathological condition the parents thought they had. They want absolutes and alternative practitioners are more than happy to lie and give them that, not cold hard facts which reputable practitioners are constrained by. Disclaimer: I know there are lousy physicians in practice but to hear the vaccinesdidit crowd, none of them know what they are doing.

  3. Dee April 17, 2012 at 23:52 #

    “It may be the way you feel but it still doesn’t make it right”

    What’s not right about this? I’m sorry but you don’t know me and obviously I’ve hit a cord with you that I’m not sure I meant to hit. I wanted to explain why some parents feel this why and why after witnessing a slow regression, it is perfectly natural reaction. Please don’t pigeon hole me as I have not said anything that you insinuate that I have said about vaccines or denial or normalcy.

    This is why I speak up. We are not looking for normacy. We are not looking even, for non-autistic. What we are looking for it to regain what was lost… It’s all about my son… It’s all about the absolutely HORRIBLE thing that happened to him that is currently called regressive autism based upon his Fragile X premutation and AC1298 MTHFR mutation after a fever. Dr. Hagerman, the world’s expert on Fragile X has seen my son and with her help… We are fighting to get him back.

    This is my point. The autism world says you have to be one side or the other. You talk about absolutes and shades of grey… I am a shades of grey person with an MLIS who knows how to read research papers and has a biologist husband. I have had to take in all the papers to all the doctors to have them say again and again, yes this is nice research but we don’t know what it means. Meanwhile enzymes, b12shots, cur cumin and vitamins based upon solid practical testing ordered by the pediatrician including tests looking for mitochondria dysfunction have guided our every effort and then confirmed by UC Mind and Hagerman.

    I believe your response is the black and white one. It is fighting so many in the autism world to say this research is critical, it is happening and there is a subset of kids who regress based on genetics and environment that IS treatable and we are NOT awful parents for doing so… I am not fighting an illusion I am fighting and I actually have science on my side, science mom.

  4. Dee April 18, 2012 at 00:00 #

    Just a ps… I am not meaning to say that someone is not a good parent for not doing this…. Not at all!!

    I am saying that in my family’s current situation with our condition, my son’s autism is a subset that has a causation and is medically treatable and I am fighting back against those who assume that I am wrong, that I am in denial looking for normal and that I don’t accept me son. There is a group of us inn this middle ground who are not what many paint us to be. That’s all. Thanks.

  5. passionlessDrone April 18, 2012 at 01:57 #

    @Dee –

    Very well spoken. Our experiences are very similar and I will state for the record that I like your style.

    Particularly in terms of GI issues and mitochondria dysfunction that often accompanies regression. This is an area where a parent is forced to find alternative medicine to help their child’s issues.

    Completely correct. Our alternative doctor didn’t lie to us and tell us they could cure autism, that they knew what caused autism, or anything else like that, but they did tell us that much of the time when children who presented with similar GI problems as our son tried dietary restriction, administration of probiotics, and anti fungals, their GI health and behavioral manifestation improved. That is exactly what happened in our case.

    I would have loved for our regular pediatrician to have told us this, but he didn’t. Considering the fact that we didn’t think that it was acceptable that our son have a fountain of liquid stool five times a day, every day, we weren’t technically forced to seek out alternative treatments, but we’d have been damned fools not to do something.

    @Science Mom

    Parents aren’t “forced” to find alternative medicine to “help their child’s issues”; they do it because they don’t want to be told that their child doesn’t have a pathological condition the parents thought they had. They want absolutes and alternative practitioners are more than happy to lie and give them that, not cold hard facts which reputable practitioners are constrained by.

    With all due respect, you don’t have a clue why some of us did what we did. Going further, I guarantee that you’ll lose more parents to alternative medicine practioners with this attitude than you’ll gain; I’m not sure if that would bother you or not. Up and above the GI distress my son was experiencing between two and three years of age, he had literally chewed all of his fingernails off. He had no fingernails. His fingertips were raw from constant chewing. That was the daily reality, every day, every hour, every five minutes, he had fingers in his mouth. He would not stop.

    We went to our pediatrician (who also told us that our sons constant head banging was not unusual), whose only recommendation was that we soak our son’s fingers in something so foul that he would not chew his nails any longer. That was it. He’s a nice enough guy, and competent for normal stuff, he just didn’t know what else to do with a toddler that had OCD pica.

    Make no mistake, when we asked our alternative doctor for help with this, we were ‘forced to help our child’s issues’; it wasn’t about seeking out someone to tell us something comforting, it was that the alternative was to let him continue biting his fingernails off.

    We didn’t need to be told that that a toddler with no fingernails wasn’t pathological, was normal, was caused by vaccines or anything else; we needed someone to help us make our son stop hurting himself. That is what we got, it turns out, rather simple blood tests revealed a deficiency of zinc, a finding subsequently validated by several papers in the literature. Within two weeks of supplementation, our son’s fingernails began to come back.

    Thank goodness we didn’t run into invective like this and believe it before we tried to ‘helped our child’s issues’. What a sad and tragic notion.

    Regarding the topic, the site was an interesting one. The people who report drastic regression in their children are a loud bunch, and I believe that many of them witnessed soemthing real, but there are relatively few of them.

    – pD

    • Sullivan April 18, 2012 at 02:27 #

      pD–

      on the flip side, the worst advice I got–by far–for my kid was from an alternative medical practitioner. Thankfully I wrote off the money spent for the session, wished said practitioner had clearly identified the methods *before* the appointment, and went away. If my kid had a latent mitochondrial disease (something said practitioner did nothing to discern), the advice that practitioner gave us would have resulted in us witnessing a very real regression. I shudder to think that the same advice was given to other parents.

      If you believe that Science Mom is worried about “losing parents to alternative medicine practitioners” does that mean you are here to win parents over to alternative medicine practitioners? If not, what do you base your statement to her upon?

  6. stanley seigler April 18, 2012 at 06:58 #

    hope these discussions are to inform and not to win an argument (prove an ego point)…have heard most of them (or similar ones) for 40 some years… my non scientific opine: the parent must make a decision and hope/pray they are right…

    if right, congratulations…if wrong dont try to justify.

  7. Lawrence April 18, 2012 at 10:46 #

    When parents stop fixating on the “medical” problems they believe exist that may or may not be related to their children’s autism diagnosis, and start working on effective therapies to assist in developmental and behaviorial aspects, there has been marked improvements – autism is a “developmental delay” disorder, not “developmental stasis.”

    Chelating children rather than helping them with true therapies should be a crime.

  8. Science Mom April 18, 2012 at 13:13 #

    This is why I speak up. We are not looking for normacy. We are not looking even, for non-autistic. What we are looking for it to regain what was lost… It’s all about my son… It’s all about the absolutely HORRIBLE thing that happened to him that is currently called regressive autism based upon his Fragile X premutation and AC1298 MTHFR mutation after a fever. Dr. Hagerman, the world’s expert on Fragile X has seen my son and with her help… We are fighting to get him back.

    Dee, when you use language such as “lost”, “This is why we feel like autism has “stolen” our children.” and “We are fighting to get him back.”, it provokes a very specific connotation that your child is no longer your child unless he fulfils your expectations of what a child should be. So if you don’t mean that, I would suggest a different choice of words, otherwise you are bound to provoke reactions like mine.

    This is my point. The autism world says you have to be one side or the other. You talk about absolutes and shades of grey… I am a shades of grey person with an MLIS who knows how to read research papers and has a biologist husband. I have had to take in all the papers to all the doctors to have them say again and again, yes this is nice research but we don’t know what it means. Meanwhile enzymes, b12shots, cur cumin and vitamins based upon solid practical testing ordered by the pediatrician including tests looking for mitochondria dysfunction have guided our every effort and then confirmed by UC Mind and Hagerman.

    No, that wasn’t your point; your point was to be an apologist for parents who view their children as changelings stolen from them. I along with others are not at all opposed to evidence-based treatments, therapies and even “if it’s harmless and might help then fine” treatments for alleviating co-morbidities and/or improving the lives of autists.

    I believe your response is the black and white one. It is fighting so many in the autism world to say this research is critical, it is happening and there is a subset of kids who regress based on genetics and environment that IS treatable and we are NOT awful parents for doing so… I am not fighting an illusion I am fighting and I actually have science on my side, science mom.

    Autism research into subsets as they are identified is absolutely critical, no argument there. But treating children as though they are “lost” or “stolen” and subjecting them to chemical castration, hyperbaric chambers, chelation, dozens of potentially dangerous and unproven supplements and diets, foecal transplants and not being able to accept that that is your child there in front of you and not some test subject does make some parents pretty awful. Science is not on their side.

  9. Dee April 18, 2012 at 18:16 #

    Lots of stuff to respond to here. Thanks for the opportunity. I’m may not be saying everything right but I’m trying.

    First, I’m trying to distinguish alternative medical help into subsets… Chelation, oxygen chambers… Etc… All dangerous stuff. The black and white is to lump everything into one category and say Jenny McCarthy. The newest research, as evidence begins to mount about GI, immune, oxidative stress etc supports certain vitamins, enzymes (look at CureMark’s stage three enzyme), probiotics, diet, and supplements (Dr. Hagerman told me that Curcumin is the same as Minocyclene and she has had much success with it). And to try to say to folks who have been fighting the McCathyists that there is legitimate “biomedical” treatment that in certain subsets that need to occur, that needs to be distinguished from the above dangerous stuff and that is not simply based on desperate parents looking for a cure. I’m excited to see the research dividing autism into subsets and working on treatments based on testing along these lines. Its a constant struggle however, to find treatment, as PD mentioned, for the very real issues that HURT my son that are a part of his regression.

    I try to understand that my words (and others words) about “losing” my child to autism evoke very strong feelings. That’s why I was trying to explain where they come from… Because regression hasn’t always been accepted in some circles I thought that if people knew more about what it was like to witness it, they might understand where the words come from.

    Starting at 19 months after a fever my son’s personality changed. He began to withdraw. Over the course of four months he lost words, he lost social skills,but much more to the point, he lost himself… Maybe this will have a different name in the future so it won’t offend when I say this… He just lost all affect, all awareness… Became very very quiet and comatose and I would dream that he was on the middle of a lake, drowning and silently calling out to me. UCSD has reviewed our videos. They said it was the worst regression they had ever seen. He was vacant. Seven months later after PRT, B12, Curcumin (all based on genetic and medical testing) the boy had reemerged from that water. Again, UCSD had said they had never seen a progression like his. I would not let him go… To my mind, I called him back from the abyss with everything I had. We are almost there…

    This is our experience. It’s different than many, I know, but it really happened and it’s perhaps different from typical autism. UCSD asked me if there would be a new name for it… As the research divide from practicing medicine is great, it’s been a struggle and a battle to get and find treatment for our specific subset. I’m not looking to convert anyone but I’d like people to take a look at what is happening in the research, to start separating out alternative practices and to stop accusing me of not accepting who my son is…. It’s like he was in a coma… There but not there… That’s what I mean… Treating him… Fighting what happened to him to get through to him and pulling him out of the water.

  10. Dee April 18, 2012 at 18:44 #

    I don’t know what your opinions are, but I know that what you write is not consistent.

    It’s my heart… Definitely not always consistent! I try to make my thoughts and discussions consistent but the above is talking about how I feel, and why other may use those words to talk about how they feel. Susan Senator commented on a autcast post recently saying something similar about hating autism but not autistic people… I think it’s possible to have all kinds of inconsistent feelings and emotions about all of this.

    The science, on the other hand, that needs to be consistent and I thank you for being a great source for real good info.

  11. passionlessDrone April 18, 2012 at 20:18 #

    Hello friends –

    @Stanley Seigler –

    Very well stated and agree 99%.

    @Sullivan –

    I’d like to move to a place where the parent of a child like mine doesn’t spend months (or years) having very real medical problems in their child go unaddressed. While things may be changing some now, the reality is that the only people who will consider the types of things that helped my son are alternative practioners. I want fewer children to suffer, which I think is something we all can agree on, though we seem to disagree on the right way to get there. Clearly you and I had very different experiences taking our children outside the mainstream medical community.

    If not, what do you base your statement to her upon

    Well, I guess I always thought that Science Mom wanted fewer parents to goto alternative medical practioners; given my experience, and the experience of many other parents, the type of attitude she displayed in her first post is a good way to achieve the opposite. Maybe SM doesn’t care if parents go the alt-med route, I don’t know (?) and I very frequently find that trying to discern the reason other pepole do things is fraught with failures. I’m trying to stop, and that was the other thing that really bothered me about SM’s post, the generalized accusation that parents were seeking out alternative medicine practioners out of a need for comforting words and fairytales, as opposed to trying to deal with very real problems. Not only did she miss the mark, she missed the broad side of the barn and insulted people, like me, along the way.

    @everyone –

    The semantics and anger involved with the ‘trying to get back what was lost’ as an ‘insult’ idea continues to amaze and confuse me.

    Disorder like schizophrenia share a lot of biochemical, and indeed, neuroanatomical similarities to autism. Imagine, instead, my son was an adult, and had schizophrenia, and I said ‘Shit, I wish my son didn’t have schizophrenia! His hallucinations are very dangerous and make it so that he cannot live independently. In fact, I hate that he has schizophrenia, and I’d love to have the person back before his schizophrenic episodes started.’

    Have I denigrated my adult son with this statement? Have I acted like he isn’t there in front of me? I am not trying to be dim, but I just don’t get it. (?)

    I used to say this kind of thing all the time using autism, because it was a good encapsulation of what I wanted (and still want). What if, instead, I’d said this:

    I want my son to stop biting all of his fingernails off. He didn’t do that as an infant, then started as a toddler. I want my son to stop banging his head into the walls, windows, floors, and tables. He didn’t do that as an infant, then started as a toddler.I want my son to stop going to the bathroom five times a day. He didn’t do that as an infant, then started as a toddler.
    I want my son to speak. He did that as an infant, then stopped as a toddler. I want my son to wave back to me. He did that as an infant, then stopped as a toddler. I want my son to look at me. He did that as an infant, then stopped as a toddler.

    Is it somehow OK for me to say things like this, but not to say, ‘I want my child back’? For me, they’re the same thing!

    The ‘cold hard facts’ are that the reason my son doesn’t talk, or understand the concept of things like ‘dangerous’ or ‘tomorrow’ is that he has autism. For some of us, worrying about the problems of a societies failings in understanding autism are a goal to strive for, to be in a place where our hierarchy of fears allow us time and resources to worry about what other people think. If only I could get there.

    – pD

    • Sullivan April 18, 2012 at 22:33 #

      “The semantics and anger involved …”

      what anger? I see a discussion where people disagree. That is not the same thing as anger. At least I can say I am not angry and my statements are not based on anger. I saw Dee and you as coming here to pose challenging questions, aslo not out of anger, but to present your opinions.

      One thing you may have noticed–I don’t get into the cure/anti-cure discussions. It’s a very important topic, but at present not very practical. Right now there is no cure.

      Consider this: No one says, “don’t help that kid” or “don’t treat those GI complaints” or “leave the seizures uncontrolled”, for example. When someone says “I want my kid back” there are two concerns that go through my mind. First, how does this make the autistic (and other autistics) feel. Second, does this feed into the sort of desparation that leads to some of the more extreme and potentially dangerous “alternative medical” treatments.

      Consider the semantics issue–or how does this make autistics feel? You posed this scenerio:

      ‘Shit, I wish my son didn’t have schizophrenia! His hallucinations are very dangerous and make it so that he cannot live independently. In fact, I hate that he has schizophrenia, and I’d love to have the person back before his schizophrenic episodes started.’

      Let me change it to show you where the concerns I see come from. Instead of talking to me, you are talking to your son:

      ‘Shit, I wish you didn’t have schizophrenia! Your hallucinations are very dangerous and make it so that you cannot live independently. In fact, I hate that you have schizophrenia, and I’d love to have the person back before your schizophrenic episodes started.’

      Would you say that to your kid? If not, why is it OK to say the other statement to me? What if your son overheard that or read it someday? I can tell you from my perspective–if that were said to or about me I would feel like a burden. I would feel like on top of having to face the challenges I have, I am also making life bad for my loved ones.

      Life is harder caring for a disabled kid than a non disabled kid. Life is harder having a non disabled kid than not having kids. We don’t make our non-disabled kids feel like burdens, shouldn’t we try even harder to insure that our disabled kids don’t feel that way?

      I’m not saying let’s ignore challenges or, worse, lie to people either. Take a real life situation I face. I have relatives going through various stages of dementia.

      “You are doing better than yesterday. I know it doesn’t seem that way when I am feeding you, but things are better than before, and that’s the direction we want. I know you aren’t always happy here, but know that the people here are good and that we are doing everything we can to make things better”

      or,

      “I know this is a hard day. Know that we are doing everything we can to make sure tomorrow is better.”

      I don’t spend any time on wishing. I don’t avoid the fact that there are major challenges.

      When I speak to other relatives, we don’t spend any time on “I wish this wasn’t the case” conversations. We might say, “I wish I realized that things would get worse so I could have taken more advantage of the time before”.

  12. Science Mom April 18, 2012 at 21:03 #

    With all due respect, you don’t have a clue why some of us did what we did. Going further, I guarantee that you’ll lose more parents to alternative medicine practioners with this attitude than you’ll gain; I’m not sure if that would bother you or not.

    pD, you should know by now that I’m just plain blunt and am not trying to convert anyone (although I’ve been told my approach has jarred people into reality :D).

    We went to our pediatrician (who also told us that our sons constant head banging was not unusual), whose only recommendation was that we soak our son’s fingers in something so foul that he would not chew his nails any longer. That was it. He’s a nice enough guy, and competent for normal stuff, he just didn’t know what else to do with a toddler that had OCD pica.

    Not your fault but a paediatrician isn’t likely to thoroughly understand many developmental abnormalities. He should have referred you to some specialists. As I said, there are duds in medicine too.

    Make no mistake, when we asked our alternative doctor for help with this, we were ‘forced to help our child’s issues’; it wasn’t about seeking out someone to tell us something comforting, it was that the alternative was to let him continue biting his fingernails off.

    We didn’t need to be told that that a toddler with no fingernails wasn’t pathological, was normal, was caused by vaccines or anything else; we needed someone to help us make our son stop hurting himself. That is what we got, it turns out, rather simple blood tests revealed a deficiency of zinc, a finding subsequently validated by several papers in the literature. Within two weeks of supplementation, our son’s fingernails began to come back.

    pD, you got really really lucky you did. I doubt you will believe that since you saw a true cause and effect but the majority of alt med practitioners aren’t interested in EBM at all. What you describe isn’t what I’m addressing however; yours is a valid observation which required diagnosis and treatment. I’m talking about the “changeling” attitude and “lost or stolen” children who are treating autism with a shotgun approach with no consideration for safety and efficacy all in the name of “recovering their child”. You know what I’m talking about too, I know you do. So tell me how treating autism as “vaccine damage” for instance is in any way a good thing.

  13. McD April 20, 2012 at 08:31 #

    Dee, Your Susan Senator quip sounded a little too close too the old “hate homosexuality, but love gays” type of bigotry that makes my head burst. I agree with Lawrence on this one.

    My lad had a few words, and some definite social behaviours – interactions, smiles, and eye contact – before he withdrew into himself to the point that he was beginning self injurious behaviour. I guess it depends on the point of view that you adopt. I don’t consider that I lost a boy. Just that the one that I have has potential and capabilities that we can help him develop with appropriate therapy. We consider him “delayed” not “cancelled” as some clever autistic person has noted before. He is progressing on his own track, but it is clear from the structure of his sentences, vocabulary, and similar clues, that a great deal of his basic knowledge comes from ABA.

    And that is it as far as therapy goes. Of course we treat him for any other illness he may have, like any child. But as far as addressing symptoms of autism, only behavior therapy has any evidence base (some people would argue over risperidone, I think it addresses non-autistic specific symptoms and is a pharma-scam).

    Not only is the viewpoint that autism is a vaccine injury just flat out wrong, but it causes the parents to focus on medical interventions to the detriment of educational and behavioral interventions that really do improve life for the child.

  14. Science Mom April 20, 2012 at 13:31 #

    Dee, I’m sorry it took so long to respond to your thoughtful posts but here goes:

    First, I’m trying to distinguish alternative medical help into subsets… Chelation, oxygen chambers… Etc… All dangerous stuff. The black and white is to lump everything into one category and say Jenny McCarthy.

    We are on the same page here.

    The newest research, as evidence begins to mount about GI, immune, oxidative stress etc supports certain vitamins, enzymes (look at CureMark’s stage three enzyme), probiotics, diet, and supplements (Dr. Hagerman told me that Curcumin is the same as Minocyclene and she has had much success with it). And to try to say to folks who have been fighting the McCathyists that there is legitimate “biomedical” treatment that in certain subsets that need to occur, that needs to be distinguished from the above dangerous stuff and that is not simply based on desperate parents looking for a cure. I’m excited to see the research dividing autism into subsets and working on treatments based on testing along these lines. Its a constant struggle however, to find treatment, as PD mentioned, for the very real issues that HURT my son that are a part of his regression.

    There is a difference between medical and biomedical in the autism world. Biomedical invokes the McCarthy model of autism therapies so it is a loaded term. Medical on the other hand, is bland-sounding but more accurate when taking an evidence-based approach to autism or co-morbidity treatments. It sounds as though you have a physician who specialises in your particular subset of autism and while may be cutting-edge, is still basing treatments on evidence and not woo. Which leads me to some speculation; it seems as though a vacuum was created for these “biomedical” alternative practitioners as a result of frustration for parents. Co-morbidites and/or unidentified genetic bases for autism were not at the forefront of research and thus written off as part of autism. That is changing as you have noted and more consideration is given to challenges that often accompany autism.

    I try to understand that my words (and others words) about “losing” my child to autism evoke very strong feelings. That’s why I was trying to explain where they come from… Because regression hasn’t always been accepted in some circles I thought that if people knew more about what it was like to witness it, they might understand where the words come from.

    I have been reading and commenting on LBRB for years now and I have not observed anyone denying the existence of regressive autism. Sure some anecdotes have been dismissed because they weren’t actual regression and the actual prevalence of regressive autism has been in contention but never denial. I do understand what you are saying but am trying to explain that some language is very loaded and invokes the “souless” “stolen” child that parents can’t really love and accept because they are obsessed with getting their “normal” child back.

    This is our experience. It’s different than many, I know, but it really happened and it’s perhaps different from typical autism. UCSD asked me if there would be a new name for it… As the research divide from practicing medicine is great, it’s been a struggle and a battle to get and find treatment for our specific subset. I’m not looking to convert anyone but I’d like people to take a look at what is happening in the research, to start separating out alternative practices and to stop accusing me of not accepting who my son is…. It’s like he was in a coma… There but not there… That’s what I mean… Treating him… Fighting what happened to him to get through to him and pulling him out of the water.

    That is far more explanatory and not offensive. There is nothing wrong and everything right with treating autistic or co-morbid symptoms. You are treating to regain your son’s health which is different than “recovering” an autistic child because you can’t accept that your child is different. Does that make sense?

  15. Roger Kulp April 22, 2012 at 14:59 #

    You would be harder to find a more vocal proponent of autism,as a difference,rather than a disease,than Temple Grandin.And even Dr.Grandin has,on a number of occasions,here for one,
    http://www.ucdmc.ucdavis.edu/mindinstitute/events/dls_recorded_events.html
    publicly stated regressive autism,is an entirely different set of circumstances than nonregressive autism.

    In the talk here,she says that in such cases,that you should try “alternative” methods like GFCF.

    I know from my own experiences,regressive autism,is usually due to underlying genetic diseases,metabolic,autoimmune,or,in my case a combination of both.Folate metabolism,like I have,and mitochondrial disease,being the two most common ones.Folate metabolism problems lead to B12 dependent anemia,like I have.There is a lot of medical science behind this,but you have to have a lot of tests done to find out what is causing the problems.You don’t just treat every case of autism blindly the same way.A lot depends on the number and types of medical comorbids.

    There is mitochondrial problems,in my case severe depletion,even without overt mutations,that need to be treated before you get to the root cause.It’s a lot of hard work,which can take a while to pay off.

    What a lot of people seem to miss is you do not regress only once.If the underlying conditions are not addressed,life can be an endless cycle of improvement and regression,lasting into adulthood,with any infection,physical,or emotional stress,triggering another regression.

  16. Anne April 23, 2012 at 23:18 #

    @Roger Culp,

    Regarding Temple Grandin’s opinions about regressive autism: Dr. Grandin is very intelligent and talented, but I don’t always agree with everything she says. She has a PhD in agricultural engineering, which is a lot different than an MD in neuroscience or child development. GFCF diets can be very helpful for individuals with specific digestive disorders (celiac disease etc.) but are not helpful otherwise. (I’m a bit touchy about this because I’m sick of people who are not doctors telling me I have to be on a GFCF diet because their naturopath, who is not treating me, recommended it–and then saying the Stanford gastroenterologist who says I don’t need it is just an ignorant pharma shill.)

    And regarding regressions later in life: I believe this is commonly referred to as “decompensation.”

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