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News

Regression marks one in five autism cases, large study finds

by  /  17 August 2016
Trying times: Regression can occur much later in childhood than previously thought.

RBFried / Getty Images

In some children with autism, normal development stalls, often around age 2, and they start to lose many of the communication and social skills they had already mastered. The first large epidemiological study of this phenomenon, called regression, reveals that it occurs in at least 20 percent of children with autism1.

The new work, published in the July/August issue of the Journal of Developmental and Behavioral Pediatrics, also shows that regression can appear long after the toddler years.

A better understanding of regression could help researchers predict how children will fare over time and provide clues to autism’s biological basis. But despite decades of research, scientists continue to debate how prevalent regression is and even what it is.

The data come from the Autism and Developmental Disabilities Monitoring network, which estimates autism prevalence in the U.S. The network “lets us gain information from much bigger samples than would be otherwise possible,” says lead researcher Catherine Bradley, assistant professor of pediatrics at the Medical University of South Carolina in Charleston.

Previous estimates have generally relied on interviews of families from a small number of autism clinics and range from 20 to 30 percent. The new study examined medical and education records of children with autism from the entire eastern half of South Carolina.

The study sample is fairly representative of the population as a whole, says Audrey Thurm, a clinical psychologist at the National Institute of Mental Health in Bethesda, Maryland, who was not involved in the work. “It uses a very big, more epidemiologically based sample,” she says. “This is a nice addition.”

Hidden reversals:

Still, like other studies of regression prevalence, this one rests on information supplied by parents. Parents do not always accurately recall subtle shifts in their child’s development, especially when they take a survey years after these shifts took place.

“All the questions we always had about parent report of regression apply to this methodology,” says Sally Ozonoff, vice chair for research in psychiatry and behavioral sciences at the MIND Institute of the University of California, Davis. Ozonoff was not involved in the work.

The new data may be more reliable than most survey data, however, because they came from medical histories taken during doctor visits, which usually involve recalling recent events, Bradley says.

Bradley and her colleagues combed through the records of 862 children with autism at age 8 for indications that they had ever lost language, social or play skills. They also investigated ties between regression and other traits.

The documents revealed that 179 — or 21 percent — of the children had experienced a loss of skills. This is likely to be an underestimate, Ozonoff says, because doctor and school records are apt to omit cases. For a developmental setback to appear on these forms, a parent has to recognize and report it — and a doctor has to deem it significant enough to note, she says.

When researchers track children over time, they get larger numbers for regression’s prevalence. In one small study of this type, Ozonoff’s team found that social skills decline at some point between 6 months and 3 years of age in 86 percent of children with autism.

Wider window:

The new study pins the average age of regression at about 24 months but shows that it can happen as early as 6 months or as late as 7 years, a wider window than other studies have seen. Some researchers have assumed that regression does not occur after age 32. But Bradley’s team found that about 10 percent of children with autism lose some abilities after age 3.

The researchers reported that children with autism who regress have some defining characteristics. They are more likely to have intellectual disability than those who do not regress — a finding consistent with the notion that regression in children tracks with severe autism. These children also tend to have repetitive behaviors.

Regression is associated with a greater likelihood of receiving an autism diagnosis and eligibility for autism-related services at school, Bradley’s team found. “I think [regression] can serve as a red flag in a lot of cases,” she says. If so, learning to reliably spot signs of regression could expedite diagnosis and treatment.


References:
  1. Bradley C.C. et al. J. Dev. Behav. Pediatr. 37, 451-456 (2016) PubMed
  2. Parr J.R. et al. J. Autism Dev. Disord. 41, 332-340 (2011) PubMed
  • Ethyl

    Parents have begged for attention to be drawn to this. Millions were spent on epidemiological studies to prove what it wasn’t…but it looks as if very little has been done to determine the possible biological basis of what it could possibly be. I’m so glad the blinders are coming off.

    There are so many conditions already established, a lot of them genetic, that show the body can slowly poison itself or destroy tissue because of innate anomalies. PKU, Gallactosemia, Wilson’s Disease, Tuberous Sclerosis, Neurofibromatosis are all presently genetic causes that could lead to discovery. Sometimes I think we have to look at the forest, and compare what we already know, before digging in to minutia that only seems to confuse us more.

    Good luck and thank you.

    • Cathy

      “very little has been done to determine the possible biological basis “

      New Autism Genes Are Revealed in Largest-Ever Study
      https://www.ucsf.edu/news/2015/09/131871/new-autism-genes-are-revealed-largest-ever-study

      Genetic analysis: Rare mutations cause half of all autism cases
      http://dujs.dartmouth.edu/2015/11/rare-de-novo-mutations-may-cause-half-of-autism-cases/#.V8ptq00rJxA

      Two large studies published in the last year.

      • Ethyl

        Cathy: Are you a part of SPARK? https://sfari.org/updates-and-events/sfari-news/2016/sfari-launches-spark-an-online-research-initiative-that-aims-to-recruit-50-000-individuals-with-autism Last I knew, they had 15,000 of 50,000 individuals hoped to be recruited. My son is adopted, so we don’t qualify. There is _no cost_ to you, but….you will receive information regarding you and your child’s genetic makeup. I wish we could be a part of it. That is a tremendous “gift” if you are as poor as we are. I think you just send saliva samples to the lab.

        My scattered brain misses most things…interesting to see Di George Syndrome there. (I have a faint recall of why we discussed it before but won’t bring it up.) From recall of a twitter interaction…Di George is extremely variable in penetration—from mild to severe health related aspects. Don’t know what concern that is…or if there is an aspect of mosaicism. (Mosaicism in Down Syndrome can make the phenotype very mild in comparison.)

        Nice to interact again. Hope you and yours are doing well.

        I’m not sure I can find the right words (or spelling)….when I think of biology in regards to autism…I’m not thinking of behavioral or genetic etiology (which is an inarguable determinant of a syndromes presence.) When I went to school in the last ice age, PKU fascinated me. The biological cause (inability to assimilate phenylalinine leading to “poisoning”) had a solution in diet. The diet was discovered years before the genetic basis. I think Wilson’s is similar in it can be treated with chelation. TSC and NF can involve medical and surgical treatment, but not sure there is a precise treatment for the root cause, as the other 2.

        There are probably better, more precise words to encapsulate what I mean by biological. I am thinking of a treatment that changes the root cause and determines a far better long term outcome.

        • Cathy

          Thanks for the link @disqus_TMDkRSHQhF:disqus

          SPARK looks like something I definitely want to check out

      • duplicat

        Not even.

        A much more scientifically plausible explanation is β-casomorphin.

  • Planet Autism

    Clearly environmental, some people are genetically prone to being affected by the environmental cause. Hmmn now let me think what it could be…what ties in with that age range as an environmental insult…

    • David N. Andrews MEd, CPSE

      Wrong.

      Regressive stuff has a category already: Heller’s syndrome.

      • David, you’re wrong. Heller’s syndrome is a name given to developmental regression, but no cause has been discovered. Given that developmental disorders can be caused by environmental triggers, it’s entirely possible that “Heller’s syndrome”, or developmental regression, could be environmentally caused.

        • David N. Andrews MEd, CPSE

          ‘Environmental triggers’? Do explain. Unless you’re one of those ‘vaccines cause autism’ people, in which case, I’ll not be interested to hear that rubbish peddled again for umpteen-hundredth time this year.

          Regarding Heller’s syndrome and causality:
          https://en.wikipedia.org/wiki/Childhood_disintegrative_disorder#Causes

          A single, underlying medical/neurological cause has not been found but four things seem to be prevalent conditions in those presenting with Heller’s-
          1- lipid storage diseases
          2- subacute sclerosing panencephalitis
          3- tuberous sclerosis
          4- leukodystrophy

          I think you’ve got a lot of study to do before you get to where I am on this stuff.

      • Cathy

        Also Reye’s Syndrome.

        • David N. Andrews MEd, CPSE

          Do you mean Reye’s syndrome (the encephalopathy thing, G93.7) or Rett’s syndrome (the disintegrative disorder, F84.2)? The reason I ask is that Reye’s has no differential diagnosis on the autism spectrum, but Rett’s has. The distinguishing feature of Rett’s and Heller’s (F84.3) is that there’s a regression and loss of skills after a couple of years of very typical development, as something gets switched off that needs to be on for typical development. In autism, the differences are there from before the child is born, and they become increasingly apparent as time goes by.

          Just read a very interesting abstract that suggests a good reason why Heller and Rett would not be autism subtypes (such as any accurately definable subtypes might exist) but rather subtypes of ‘dementia infantilis’ …
          https://www.ncbi.nlm.nih.gov/pubmed/2806742
          “Children with developmental regression and emerging symptoms of autism have been given a variety of classifications. The authors compare two boys with Heller dementia with six girls with Rett syndrome. They all differed from children with classic autism in that they had normal prenatal and perinatal periods, followed by marked developmental regression, after which they acquired few or no skills. The boys differed from the girls in terms of estimated prevalence, age at onset, stereotypic breathing patterns, midline hand stereotypies, hand and gait apraxia and speech development. It is suggested that these children should be distinguished from those with classic autism, and should be classified as ‘pervasive disintegrative disorder, Heller type’ and ‘pervasive disintegrative disorder, Rett type’.”

          Remember that Handjob Wankfield – or whatever his name was – and his ‘study’? Found out something a while back about what he was actually doing…
          http://www.bmj.com/content/342/bmj.c5347.full.print
          —–
          Wakefield’s “syndrome”
          Unknown to Mr 11, Wakefield was working on a lawsuit,
          for which he sought a bowel-brain “syndrome” as its centrepiece.
          Claiming an undisclosed £150 (€180, $230) an hour through a Norfolk solicitor named Richard Barr, he had been confidentially put on the payroll two years before the paper was published, eventually grossing him £435 643, plus expenses. Curiously, however, Wakefield had already identified such a syndrome before the project which would reputedly discover it. “Children with enteritis/disintegrative disorder [an expression he used for bowel inflammation and regressive autism¹⁰] form part of a new syndrome,” he and Barr explained in a confidential grant application to the UK government’s Legal Aid Board before any of the children were investigated.

          ¹⁰ Wakefield A. Introduction to the rationale, aims and potential
          therapeutic implications of the investigation of children with
          Disintegrative disorder (regressive autism; Heller’s disease and
          intestinal symptomatology.” (Document issued by Wakefield and mailed to doctors and parents who approached the Royal Free , dated 3 February 1997.)
          —–

          So – he’s specifying ‘disintegrative disorder’, but then calling it ‘regressive autism’. That’s the earliest reference I can find to such a thing. He’s already, by then, looking to blame something less rare than infantile dementias on the MMR vaccine. Planet Autism thinks he’s right. I know that he’s not.

          😛

          • Cathy

            Yes, thanks. I meant Rett Syndrome.

            What I find interesting is the sane age of onset and shared stereotypies between these disintegrative disorders and classic autism.

          • David N. Andrews MEd, CPSE

            “I don’t agree that in autism the differences are there from before the child is born.”

            The research is clear on this now. Things are already there in the brain’s development by the third trimester of pregnancy. For example, Courchesne et al found much prenatal evidence in layers of cortical tissue:
            http://www.nejm.org/doi/10.1056/NEJMoa1307491
            “In this small, explorative study, we found focal disruption of cortical
            laminar architecture in the cortexes of a majority of young children
            with autism. Our data support a probable dysregulation of layer
            formation and layer-specific neuronal differentiation at prenatal
            developmental stages.”

            What they also found in that study was that the patches of disrupted tissue development were not in the same configuration in any two brains, and this may well give a clue as to the variability of behavioural expression of characteristics that would get an autism diagnosis.

            I’ll try to find the study relating to the 3rd trimester stuff later – 1.55am here in crappy Finland. And I’ve a meeting at 10am … :S

          • Cathy

            Perhaps I should have clarified. Genetic differences, yes. Neurological differences, in many cases.

            It’s that “variability of behavioural expression.” The behavioral differences aren’t always apparent until later. For 1 in 5 children with autism “normal development stalls, often around age 2, and they start to lose many of the communication and social skills they had already mastered.”
            https://spectrumnews.org/news/regression-marks-one-five-autism-cases-large-study-finds/

            Other research has pointed to a dysregulation of synapse pruning during infancy
            http://newsroom.cumc.columbia.edu/blog/2014/08/21/children-autism-extra-synapses-brain/

            A small, explorative study is interesting, but not definitive.

          • David N. Andrews MEd, CPSE

            Until I can get the pre-natal stuff found, I – as a diagnostician – will put this here:
            https://www.cdc.gov/ncbddd/autism/hcp-dsm.html
            —–

            Diagnostic Criteria for 299.00 Autism Spectrum Disorder

            Specify current severity:
            Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

            Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited
            capacities, or may be masked by learned strategies in later life).
            —–
            That in itself states clearly that there can be no regression.

            Also:
            https://iancommunity.org/cs/autism/icd10_criteria_for_autism
            —–
            ICD-10 Criteria for Childhood Autism
            A. Abnormal or impaired development is evident before the age of 3 years in at least one of the following areas:
            1- receptive or expressive language as used in social communication;
            2- the development of selective social attachments or of reciprocal social interaction;
            3- functional or symbolic play.

            – – – – –
            C. The clinical picture is not attributable to the other
            varieties of pervasive developmental disorders; specific development disorder of receptive language (F80.2) with secondary socio-emotional problems, reactive attachment disorder (F94.1) or disinhibited attachment disorder (F94.2); mental retardation (F70-F72) with some associated emotional or behavioral disorders; schizophrenia (F20.-) of unusually early onset; and Rett’s Syndrome (F84.12).
            —–
            On its own, part A seems like it could allow for regression, but – as you can see in part C – this is an excluslon diagnosis, and amongst the exclusions (the things you have to exclude first as not better explaining what is presenting) is ‘other varieties of pervasive developmental disorder’, which includes Heller’s syndrome (for some reason, they’ve listed Rett’s by name).

            The question really is: did the diagnosticians in that study misdiagnose? Well – let’s see:

            https://iancommunity.org/cs/childhood_disintegrative_disorder/icd10_diagnostic_criteria
            —–
            ICD 10 Diagnostic criteria for Childhood Disintegrative Disorder
            A. An apparently normal development up to the age of at least two
            years. The presence of normal age-appropriate skills in communication, social relationships, play, and adaptive behaviour at age two years or later is required for this diagnosis.
            B. A definite loss of previously acquired skills at about the time of
            onset of the disorder. The diagnosis requires a clinically significant
            loss of skills (and not just a failure to use them in certain
            situations) in at least two of the following areas:
            1- expressive or receptive language;
            2- play;
            3- social skills or adaptive behaviour;
            4- bowel or bladder control;
            5- motor skills.
            – – – – –
            D. The disorder is not attributable to the other varieties of
            pervasive developmental disorder; acquired aphasia with epilepsy
            (F80.6); elective mutism (F94.0); schizophrenia (F20-F29); Rett’s
            Syndrome (F84.2).
            —–
            This one actually specifies regression, and a period for normal development before the regression. It also has an exclusions criterion.

            Anything with regression that is not Rett’s fits THIS category (F84.3) better than it fits F84.0 or F84.5 … so, whenever there’s a regression involved – the loss of any skills – THIS is the diagnosis.

            Then begins the business of identifying what’s going on: as I’ve stated earlier, four things seem to be prevalent conditions in those presenting with Heller’s-
            1- lipid storage diseases
            2- subacute sclerosing panencephalitis
            3- tuberous sclerosis
            4- leukodystrophy

            The meeting I thought I had was not when I thought it was – I misread my calendar. So I’m going to sleep now. I have that meeting. Then I’ve some papers to deconstruct.

          • The differences are literally there from when the child is born though, as far as autism. It’s a function of brain development around the 2nd trimester….this also exonerates the Tdap, btw, since this is given in 3rd trimester.

            Agreement is irrelevant – this is a fact. Whether the differences are visible is another matter.

          • Cathy

            No, it’s not “a function of brain development around the 2nd trimester” in all cases. sweetie.

            I’ve already explained it below. However, you’re right: Whether you agree or not is irrelevant. I’m not going to argue with you.

          • “No, it’s not “a function of brain development around the 2nd trimester” in all cases. sweetie.”

            Again, the differences are literally there from before the baby is born. Same for dyslexia, congenital anomolies and immune disorders.

            “See my comment with citations below.”

            You mean the comment about behaviour when this is about structure?

            “However, you’re right: Whether you agree or not is irrelevant. I’m not going to argue with you.”

            Not argue. Just … you know…back up your point.

          • Cathy

            No, I mean “dysregulation of synapse pruning during infancy.”

            So, again … I’m not going to argue. Just … you know…learn to read.

          • Thank you for the correction.

          • Cathy

            and *BLOCKED*

            Got no time for bickerbots.

          • “and *BLOCKED*”

            YES! I consider it a triumph when I’m blocked rather than argued with. It just shows that people can’t actually argue with me and have to resort to blocking me.

            “Got no time for bickerbots.”

            Where bickerbots is defined as “It took about three posts for someone to concede I was right.”

          • Claire Cameron

            Hi there, I’d like to take this opportunity to remind you of Spectrum’s commenting guidelines. You can read them in full, here: https://spectrumnews.org/about/

            In brief, they are
            – Stick to the science
            – Stay on topic
            – Be brief
            – Be polite

            We will moderate and may delete all comments that don’t follow these guidelines. Thank you for helping Spectrum maintain a safe, inclusive and stimulating discussion forum. If you have questions about our guidelines, feel free to email [email protected].

          • Thanking people is manners. I was wrong and admitting that – that’s actually part of sticking to the science.

          • Claire Cameron

            Hi there, I’d like to take this opportunity to remind you of Spectrum’s commenting guidelines. You can read them in full, here: https://spectrumnews.org/about/

            In brief, they are
            – Stick to the science
            – Stay on topic
            – Be brief
            – Be polite

            We will moderate and may delete all comments that don’t follow these guidelines. Thank you for helping Spectrum maintain a safe, inclusive and stimulating discussion forum. If you have any questions about our guidelines, feel free to email [email protected].

    • FACTS

      you are right..

      PLEASE do your own research! The statistical probability is infinitesimal that each and every case of regressive autism following vaccinations are ALL “just a coincidence”… even if someone were to claim that a single such case was 99% likely to be a coincidence- for 2000 such cases to ALL be coincidental there is a 0.00000018637566 % chance …. tragically the actual number of children regressing into autism is around 20,000 per year- the possibility that ALL of those cases are just coincidental would be 5.0569883e-88. add to that impossibility, the notion that EVERY single study that links autism and vaccines is “flawed”.. that Hannah Poling’s regression into autism following vaccines was the “only” such case in world history.. that every single case of damages being awarded to autistic kids for vaccine injuries are all just “mistakes”.. that every single expert, scientist, or doctor who publicly warns of brain damage and autism as a result of vaccines are ALL “quacks”.. that multiple other lab analyses have confirmed wakefield’s findings, but they are all “in cahoots with Wakefield”.. that every single incidence of important facts being hidden from the public are all explainable because “they aren’t important”.. Japan banned the MMR, but americans never heard about it at all.. the CDC’s William Thompson’s statements have been blacked out of the media.. honest people do NOT hide important evidence or information- the coverup is proof of guilt. . there is no valid reason that critically important stories should be hidden- anyone continuing to trust those corrupt sources has chosen to stay in the dark.. thousands and thousands of normal children regress into autism each year.. the study below clearly documents the fact, even though the researchers have blindly swallowed the ridiculous “coincidence” theory
https://www.sciencedaily.com/releases/2004/12/041203100809.htm

  • David N. Andrews MEd, CPSE

    There’s already a category dealign with regression: Heller’s syndrome. That has a clearly-defined pathogenesis.

    That, incidentally, was the initial diagnostic category mentioned in the first Wakefield proposal.

  • lifebiomedguru

    All of the science reviewed in “Causes”: see envgencauses.com

  • FACTS

    PLEASE do your own research! The statistical probability is infinitesimal that each and every case of regressive autism following vaccinations are ALL “just a coincidence”… even if someone were to claim that a single such case was 99% likely to be a coincidence- for 2000 such cases to ALL be coincidental there is a 0.00000018637566 % chance …. tragically the actual number of children regressing into autism is around 20,000 per year- the possibility that ALL of those cases are just coincidental would be 5.0569883e-88. add to that impossibility, the notion that EVERY single study that links autism and vaccines is “flawed”.. that Hannah Poling’s regression into autism following vaccines was the “only” such case in world history.. that every single case of damages being awarded to autistic kids for vaccine injuries are all just “mistakes”.. that every single expert, scientist, or doctor who publicly warns of brain damage and autism as a result of vaccines are ALL “quacks”.. that multiple other lab analyses have confirmed wakefield’s findings, but they are all “in cahoots with Wakefield”.. that every single incidence of important facts being hidden from the public are all explainable because “they aren’t important”.. Japan banned the MMR, but americans never heard about it at all.. the CDC’s William Thompson’s statements have been blacked out of the media.. honest people do NOT hide important evidence or information- the coverup is proof of guilt. . there is no valid reason that critically important stories should be hidden- anyone continuing to trust those corrupt sources has chosen to stay in the dark.. thousands and thousands of normal children regress into autism each year.. the study below clearly documents the fact, even though the researchers have blindly swallowed the ridiculous “coincidence” theory
https://www.sciencedaily.com/releases/2004/12/041203100809.htm

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