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Posts Tagged ‘recovery from autism’

What is Autism Recovery?

If you know anything about me, you know that I am passionate about providing quality services for children with autism as early as possible to ensure that every child has the opportunity to progress as far as possible and to potentially recover from autism. I’ve written about this topic here, here, and here.

If you think I’ve already had a few too many to drink today, please check out this professional video from the University of Connecticut. The researcher in this video is a Licensed Clinical Psychologist. Her name is Deb Fein and she is really good at diagnosing children. She realized she needed to study this further when a child she had previously diagnosed returned to her several years later and did not meet the criteria for autism.

So she began researching this very topic. While recovery from autism describes what she sees, Dr. Fein has chosen to use the words Optimal Outcome to describe the children who ultimately obtained optimal outcome and no longer met the criteria for autism.

In our journal club meeting on Monday, we read and discussed the following article:

Moulton, E., Barton, M. Robins, D. L., Abrams, D. N., & Fein, D. (2016). Earlycharacteristics of children with ASD who demonstrate optimal progress between age two and four. Journal of Autism and Developmental Disorders, 46, 2160-2173. You may access a free copy of the article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4860351/pdf/nihms761908.pdf

We were a little disappointed in this paper in that it didn’t address treatment and optimal outcome but rather predictors of optimal outcome. 190 children participated in the study with 19 of them achieving optimal outcome.

At the beginning of the study, researchers classified all children into 4 groups: PDD-NOS; Asperger’s; ASD; and ASD Low MA (mental age less than 12 months). On average, all children were diagnosed around 26 months of age. Re-assessment occurred around 48 months.

Before we go further, it is important to note that the children in this study were Caucasian and far above the poverty line. Also, the study didn’t control for early intervention so it’s hard to really say other than the obvious:

  1. Children who were originally diagnosed with PDD-NOS were more likely to lose their diagnosis at re-evaluation.
  2. No children with ASD-Low MA met the criteria for optimal progress (OP) at follow up assessment. 
  3. Children in the OP group showed less severe symptoms in the area of social skills, stereotypies, and sensory abnormalities
  4. Children in the OP group showed fewer DSM-V symptoms at initial diagnosis
  5. Children in the OP group showed stronger adaptive abilities
  6. Lesser symptoms of restricted interests and  repetitive behaviors predicted OP.

​It is super important that we not think of this as mis-diagnosis but rather, the earlier the diagnosis, the earlier the intervention, the more quantity of intervention, and thus, better outcomes that result in losing the autism diagnosis.

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One of the popular topics this week has been the discussion about children outgrowing their autism diagnosis. If you have missed these discussions, you may catch yourself up by visiting here, here, and here.

Before we jump in to the original article on which all of this discussion is based, we would like to point out that we have already discussed how children with autism can recover from autism. If you missed that post, you may read it here.

Ok, so what is all this talk about “outgrowing autism”?

We prefer to go to the original source to make sure people are accurately reporting what was published. Heather A. Close, Li-Ching Lee, Christopher N. Kaufmann, and Andrew W. Zimmerman authored the paper. The journal Pediatrics published the paper which is available online now and will be available in hard copy in February 2012.

Purpose

The authors set out to describe characteristics and co-occurring conditions in young children, children, and adolescents.The authors also stated that they wanted to describe how characteristics and conditions may cause a change in the diagnosis of ASD.

Participants

The authors actually sought participants who either: a) currently had an autism spectrum disorder (ASD) diagnosis; or b) who had an ASD diagnosis in the past but no longer carry such a diagnosis. Interestingly, the authors did not speak to any of the participants directly. Rather, they pulled the data from a database that was collected as part of the 2007 National Survey of Children’s Health.

Method

To complete the study, the authors opened the 2007 database and retrieved answers to two questions.

  1. Has a doctor or other health care provider ever told you that the child had ASD?
  2. Does that child currently have autism or ASD?

Once the authors retrieved the data for parents who responded to the two questions, the authors created two groups with the data. One group with a current diagnosis of ASD and a second group of children who do not have an ASD diagnosis but whose parents were once told that the child had ASD.

The authors then ran a number of statistical analyses with the data based on three age ranges of children.

  1. young children aged 3–5
  2. children aged 6–11
  3. adolescents aged 12–17

The authors also examined the data set to determine if any of the following conditions co-occurred in the children:

  • attention-deficit/hyperactivity disorder
  • learning disability
  • developmental delay
  • speech problems
  • hearing problems
  • anxiety
  • depression
  • behavioral or conduct problems
  • seizures or epilepsy

Results

Finding #1: Young children ages 3-5 with a current diagnosis of ASD were more likely to have a current learning disability. Might we add here that learning disabilities are often not diagnosed until age 8 or 9. Thus, we find it hard to believe that children ages 3-5 were diagnosed with learning disabilities. Perhaps they had developmental delays but the authors did not state that.

Finding 2: Young children ages 3-5 with a current ASD diagnosis were more likely to have current co-occurring conditions than children without a current ASD diagnosis.

Finding 3: Children ages 6-11 with a current diagnosis of ASD were more likely to have a past speech problem and current anxiety.

Finding 4: Adolescents age 12-17 with a current diagnosis of ASD were more likely to have current speech problems and 10 times more likely to have current seizures or epilepsy. Note: We would hope that the children have current speech problems since the definition of ASD diagnosis requires that speech problems be present!

Comments

Honestly, it is surprising that such a low-quality study would find itself in a prestigious peer-reviewed journal such as Pediatrics. It is even more surprising that it would receive subsequent attention from the press. This type of study hardly qualifies as a master’s thesis, let alone a study that is covered in national news.

The authors did not conduct an experiment. The authors did not verify if the children actually had autism. The authors did not review records to determine if a diagnosis existed in the child’s history. The authors based their entire paper on someone else’s data set.

The original data set the authors utilized is also full of issues. The authors noted that the majority of respondents were white, non-Hispanic, and that most of them had health insurance for at least one year. Not to mention that at 61% of the respondents had incomes over 200 times above the poverty level. Thus, the study results are skewed towards white, middle and upper-class families.

Finally, the authors based all of their conclusions and findings on parent report. Please do not think that we do not believe parents. We do. However, a parent may think their child has ADHD or learning problems but that does not mean that an actual diagnosis of ADHD or learning disability exists. Thus, when the authors discuss how other conditions may impact the autism diagnosis, they are merely speculating as their study did not prove, or control for the other conditions.

The bottom line here is that children in this study who had a history of ASD, may or may not have even had an ASD to begin with. The authors failed to verify this information. Moreover, the authors failed to ask if the children received intensive early intervention or biomedical intervention that may have resulted in recovery from autism.

Finally, the authors never stated that children outgrow autism. The authors themselves state that the children who no longer have a diagnosis could have been:

  • misdiagnosed in the first place
  • responsive to early intervention
  • or they may have experienced developmental changes

So, we are asking you to please check the facts before spreading rumors. Children do not outgrow autism.

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My parents were told to put me in an institution…They are… it’s called Harvard.  I am recovered thanks to them and TACA.”

—Simran, CA

In case you haven’t been following the news out in California, the LA Times recently ran a four-part series on autism. One part focused on recovery and you can read it here. If you want to read the other articles, you may find them here.

We are happy to hear people talk about the possibility of autism recovery despite its controversial nature.

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We know recovery is possible and we have personally seen children recover. So, we thought we would review a peer-reviewed article on autism recovery.

Neuropsycholgy Review published the article and Molly Helt, Elizabeth Kelley, Marcel Kinsbourne, Juhi Pandey, Hilary Boorstein, Martha Herbert, and Deborah Fein served as authors. You may find a copy of the article here.

Recovery Defined

The authors first defined “recovered”.

  1. First, the child’s medical or psychological records must have a convincing history of autism spectrum disorder.
  2. The medical or psychological records must demonstrate that the child had a history of delayed or slowed development.
  3. The child must currently be learning and on a typical developmental trajectory in all areas.
  4. The child must no longer meet the definition of autism spectrum disorders as measured by an independent psychologist.

Predictors Associated with Recovery

After defining recovery, the authors go on to review research articles describing recovery. Following the review, the authors discuss predictors of recovery. By this, they sought to examine pre-treatment characteristics that were associated with positive treatment outcome. Before reviewing the predictors, it is important to note that the predictors are associated with positive outcome and do not guarantee recovery. It is also important to note that children who lack one or more predictors may still go on to recover.

  1. Early communication and language
  2. IQ
  3. Motor development
  4. Rate of learning after intervention begins

Predictors Associated with Poor Outcome

Next the authors review characteristics that have been associated with poorer outcome. Again, these are merely associations and do not guarantee that a child who exhibits these traits will have a poor outcome.

  1. Accelerated head circumference
  2. Seizures
  3. Pre-existing condition such as Down syndrome, tuberous sclerosis
  4. Other sensory impairments (blindness, deafness)
  5. High rates of stereotypical behaviors

Treatments Associated with Recovery

Applied Behavior Analysis (ABA) is the treatment most often associated with recovery from autism. Research has shown that intensive intervention (40 hours per week) for a period of 2 years or more is most often associated with recovery.

The authors discuss other treatments with promising outcomes such as pivotal response training and the Denver Model. The authors also discuss the importance of biomedical interventions to address the illnesses often seen in children with autism (e.g., GI disease, food allergies, and metabolic disorders).

Summary

Recovery from autism is possible. While many factors are associated with positive outcome, scientists have yet to find the one approach that works for every child. Even with intensive intervention, there is no guarantee that a child will recover.

Additional Information on Recovery

Talk About Curing Autism (TACA) has quite a few recovery stories available on their website. We used the Zach’s story for our photos in this blog. If you would like to see some videos on recovery, we like the video produced by the Center for Autism and Related Disorders (CARD), Recovered. You may also find these videos at TACA helpful.

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