Regressive autism… What is it? Is it real? What to look for? What I wish I had known….

image_mediumAs I sat in the fetal position, my knees drawn up, I was desperately trying process the words being said to me. She was speaking right above me, but her words were drowned out by the sound of my heart, which was beating wildly. My first ever panic attack was from the words “PDD… autism spectrum… early intervention.”

I was with only my two children and two strangers, women from Early Intervention. Professionals who had come to my house to check on my son because I had become concerned that he wasn’t the same child he had been. The child about whom at six and seven months old, I would say to my husband, “We will never have to worry about him developmentally.” Boy, was I eating those words as I sat in my living room being told my son most likely had something called Pervasive Developmental Disorder. Which did not register until I heard the dreaded word “autism.”

I wasn’t even thinking autism was a possibility. From my son’s birth I had watched him like a hawk and looked for all of the necessary developmental milestones. He never showed one delay; in fact, he was advanced in everything. I knew way too well what the word “autism” meant. My mother and former stepfather had a son while I was in college. He had severe autism and was nonverbal. My sister had lived with them when he was a baby. He used to say “I love you, Angie” clear as day. Then she left home and didn’t see him for about six months. When my sister saw him again, he could no longer say anything or look at her. She told me she thought my mother’s husband had left something out for him to get into, that they must have done something wrong. I never knew what to think; maybe my mother’s job chemically cleaning hospital equipment while she was pregnant with him was the reason. Or maybe my sister was right. I had barely seen him in the early years, I was trying to get distance and start on my own path. I did remember my brother seemed totally fine when I saw him at eight months old.

My ex-stepfather who had custody of him, and whom I rarely saw, told me the year before this day on the couch that it was the DTP shot that did it. But I shoved that into the corner of “likely crazy talk,” because I believed that vaccines were excessively important. I was in denial, since my older daughter and son were already experiencing many reactions and illnesses after vaccinations, which I was excusing as coincidence. Thousands of questions and fears ran through my head and then I was struck with incredible guilt. Once the women from EI left, I called my mother, crying uncontrollably. “Mom, I’m so sorry! It wasn’t your fault! I should never have blamed you even for a second!”

Why on earth had no one ever mentioned that autism was something that could happen after perfect development? It wasn’t mentioned in any of my mothering books, not on the news, not anywhere. To add insult to injury, the slew of doctors’ appointments after this revelation of possible autism not only didn’t answer any questions, it only further confused us and wasted precious time. You see, we caught it early – so early he wasn’t even finished regressing. We should have been able to do something; however our neurologist and pediatrician did not know anything about this. Worse, neither believed he was on the spectrum. From both I heard versions of “autism is the new fad diagnosis.” But that didn’t answer the questions of why he had stopped talking, stopped doing everything. The neurologist was so completely uninformed and illogical, he declared on our last visit with him that CJ was just speech delayed. But my son lost all of his speech; he couldn’t be delayed. We needed to find the why. This time was crucial, but instead of gaining the immediate help my son clearly needed, political opinions and ignorance failed him, failed us.

This happened 13 years ago, and unfortunately to this day the public and doctors are still uninformed about regressive autism. Why is this? Are the words “regressive autism” dirty or not politically correct? Or maybe they are just two words together that cause a great deal of fear, so the general information train leaves them out without explanation. Whatever the case, parents are not getting the vital information they need when it comes to early identification of autism, that it’s not always there to start with, and in reality many are not born with it. Sometimes it occurs later, even after they’ve hit all of the developmental milestones you were told to look for.

We are all aware that not all cases of autism have histories of regression, but when researching autism websites, asking your pediatrician or watching the news about autism, you rarely see the term “regressive autism” unless you are reading a personal account. New parents reading these personal accounts about autism see: “My son/daughter was totally normal and then….” Consequently what comes next is extremely frightened parents who were unaware of that possibility, trying to understand what regression means and what they should be looking for in their children. When they ask around to get an explanation, they are typically given erroneous answers like, “Well, they must have missed something… regression doesn’t really happen… don’t worry, it’s genetic… you’d have noticed it from birth… it’s extremely rare.” And my personal favorite, “Parental accounts are not reliable.” For those of us with very real personal histories of watching our children regress, that last one really makes us cringe. This is truly one of the most irresponsible things to miss when educating about autism: completely sidestepping or ignoring the possibility of regression into autism.

People who’ve witnessed regressive autism regularly have to dispel the myth of its rarity, and whether it exists. Here are two studies validating parental report of regression, using videotapes of children at 12 and 24 months.

As for prevalence of regression in autism, a study in the Journal of Autism and Developmental Disorders found 32.1% of the cases of autism were regressive. Prevalence factors from the CHARGE study found 15% of ASD children lost both language and social skills and 41% lost either language or social skills. And then there is the IAN research, which used a parent reporting system to track percentages of regression and preliminarily found “39% of children with a variety of ASDs and 49% of children with a diagnosis of autism experience a loss of skills by age 3.”

A racial disparity may also be present for regression, according to early results from an Autism Speaks ATN study, where regressive autism was reported twice as often among African-American children and along with a higher rate among Hispanic children in comparison with white children.

Many other studies measure the percentages of regression in autism; the results are varied but the most common regressive symptom found in all of these studies is loss of speech. Word loss specifically in a study in the Journal of Child Psychiatry, said to be “reliably identifiable phenomenon in early childhood that appears to be unique, but not universal to ASD.” The study goes on to say that it could be a “useful red flag for ASD in a significant minority of cases.” In other words, if your child loses any or all of their speech, autism should be immediately considered.

Speech loss is not the only symptom to look for. Eye contact can also regress; sometimes it’s all at once or the subject can lose eye contact from strangers, then extended family, then you. One I rarely see mentioned is loss of imitation ability. Other skills that can regress are motor skills, pointing, social interactions with siblings, ability to follow directions, mood changes, life skills, responding to name, and so on. The loss of any skill should be taken seriously and followed carefully.

Many times when these regressions of skill(s) start to happen, you excuse it because your child is sick, or they have a new sibling, schedule or daycare. An off day here or there, where they have changes affecting their emotions, which in turn may affect their skills, is understandable. However if this behavioral change goes on more than a few days or weeks, you want to start looking closer. Establish a timeline, one where you first noted anything was different.

For many parents, our first clue was medical. It can be that controversial pattern where the child developed adverse reactions following vaccinations that preceded the regression. You may or may not have pinned the illness, fevers, rash, fussiness, severe colic, GI pain, etc. to the well doctor’s visit. Fevers, viruses, infections, encephalopathy can also lead to autism on their own. Other environmental insults are possible, such as reactions to toxic cleaning products or a pesticide spraying at or near your house. Medical regressions are rarely ever discussed. Most often you will find the rare genetic diagnoses as possible suspects for regression, like Rett’s Syndrome.

My family’s story of regression started at 15 months old. Our son CJ received the MMR vaccine and 48 hours later had a 105-degree temperature and three days later a full body rash. He would scream from severe stomach pain and had toxic-smelling, non-stop loose stool diapers. He started experiencing several food intolerances and his development leveled off. I excused this leveling to his constant irritable nature. His gross motor skills were still very good and he still had the words he had gained, but something was very off and my husband was extremely concerned about all of the new “staring” our son was doing. He received two more vaccines at 18 months and immediately I noticed he no longer followed his sister and was actively avoiding his father. Things were slipping away: words harder to find, attention harder to get, constantly ill, eye contact was leaving from everyone except me, and imitation was not immediate. This went on for four months before I finally took him to an early intervention open house; it was one of his “off” days and they scheduled a home evaluation immediately.

Other families have regression stories that are eerily the same, with fevers and rashes and similar timelines. Some regressions can happen in a snap, and some even slower than we experienced. Because of the recent CDC whistleblower Dr. William Thompson admitting he and his coauthors omitted data in a 2004 MMR/autism study, parents banded together to create an extremely powerful video campaign called #HearThisWell. To see several hundred firsthand testimonies of vaccine regression particularly, and the symptoms their children developed, this online resource is invaluable.

In viewing the videos you will notice another trend not normally mentioned in mainstream media: predisposition. Medical commonalities have been found in the families of autism, a mold we undeniably fit in. One that is autoimmune in nature – thyroid dysfunction, rheumatoid arthritis, allergies, lupus, etc.

When professionals go through the process of possible diagnosis of a young toddler, most developmental doctors, speech pathologists and evaluating therapists rely almost exclusively on parental interviews. In my family’s personal experience we had several different evaluations early on. It struck me how different all the reports were. Most of the time they left off all mentions of regression, that the skill had been achieved and then lost. The diagnosticians definitely left off all the accompanying and preceding medical symptoms, and the vaccine adverse reactions were completely ignored. They trusted me when I said, “No, he can’t do that” but completely ignored my full statements including, “He used to do it for me all of the time,” or “He had it and lost it,” And they must have hit the mute button when I continually began with, “He had the MMR vaccine and 48 hours later developed a high fever, rashes…” Autism, in the world of the American Academy of Clinical Psychiatry, is only thought of in developmental missteps and/or behaviors. The accompanying medical dysfunctions are only recently but scarcely being looked at or noted. Strange, considering how even the first cases of autism noted by Kanner on their individual reports showed many medical parallels. Just think where we could be in terms of productive autism treatments if only the full picture beyond development and behavior had been investigated since the beginning.

Even though environmental factors are now getting some play in the media and medical circles as a possible cause of autism, they’re largely centered around pregnancy or fixed prenatal timing. You often hear scientists say they are now sure when autism occurs, and it’s in the womb. The study they are referring to is in the New England Journal of Medicine. The study actually finds some great clues about autism in affected individuals’ brains post mortem. It’s the implied “permanent” talking point that doesn’t seem plausible when you consider autism regression and autism recovery. Both are known to happen, so a fixed or permanent situation does not resonate as accurate. In essence they were measuring altered gene expression in these individuals. The environment can alter gene expression prenatally, but it also can be altered in early postnatal stages. Recovery is a word not everyone believes when it comes to autism; some recovery is explained away as “growing out of it,” or “they were falsely diagnosed.” However you cannot grow out of something that was permanent from in utero development.

My advice to parents suspecting autism and looking for professionals to help them is to find someone who studies the entire picture, including the very important accompanying medical issues. Seizures, encephalopathy, food allergies, gastrointestinal abnormalities, etc. should all be explored and treated. If a doctor does not hear you or your concerns, do not bother trying to argue with them. Find one or more professionals with whom you are comfortable. Ask other parents for recommendations. You will find the most helpful information comes from other parents whose children have the same regressive profile as yours. Trust your instincts and never give up. There are so many interventions, and when done early can do a world of good. Hope doesn’t end when children are little; improvements and recovery can happen at any stage.

One of my many reasons for writing about regressions is my experience with a doctor who finally listened to my son’s full medical/developmental picture. I had given up on neurologists after that first one, who allowed political opinions to color his diagnosis of what was happening to CJ. My son, who in his mind was only speech-delayed, had regressed further to full-blown autism not long after. But when he turned eight years old the absence seizure activity could no longer be ignored and we sought out a new neurologist, recommended by a trusted GI doctor who respected my observations and me. This neurologist looked at my son’s history, took history from me, and didn’t ignore any information. After several tests this doctor said to me, “Considering his current seizure activity and the results from his two-year-old tests, I wish that you had come to me earlier. If I had seen him before he was five years old, I believe we could have stopped some of this regression by treating his seizures and inflammation.”

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