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Posts Tagged ‘recovery’

We came across a new video about autism recovery that we are excited about! One of our parents actually found it first. When the mom talked about it, I just assumed it was another CARD video as they have been the predominant leaders in this area. Interestingly, it was not from CARD but rather a professionally produced video from UCONN!

We have been a fan of Dr. Fein since we first learned that she studied children on the spectrum. See one of our previous posts here. She is not a behavior analyst but rather a licensed clinical psychologist. She is not in the business of ABA but rather a professor in clinical psychology. You can read more about her here.

So…..now for the video. We hope it inspires you as much as it does us!

http://medvideos.org/video/215/is-it-possible-to-recover-from-autism

 

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"A child with autism (three years old) po...

“A child with autism (three years old) pointing to the fish in an aquarium.” The photo demonstrates a controlled randomized test by Kasari, Stephanny Freeman and Tanya Paparella to determine whether intensive training in sharing attention (in this case, pointing at fish) and pretend playing can lay the groundwork for the acquisition of language skills and subsequent normal development. (Photo credit: Wikipedia)

Hi and welcome to Ask Missy Mondays where I answer a question from a reader. Today’s question comes from a mom with a newly diagnosed child on the autism spectrum. She is searching for answers at all hours of the night. Marie says,

“Hi Missy, I am very new to this autism thing. I have heard that children with autism can get better–even lose the diagnosis completely. Is this true or is this some quackery to get me to buy something I cannot afford? Where can I read more about this treatment and how do I know if it’s real?”

Hi Marie and thanks for stopping by the blog. You are not being sold “quackery”. The truth is that children with autism CAN recover–even lose the diagnosis. I have written about this before (here, here, and here), which is probably how you found this blog.

Applied Behavior Analysis (ABA) therapy is the only treatment that has been proven to help children recover from autism. Dr. Lovaas is best known for his study describing the improvements of almost half the children who received the treatment. Other scientists have replicated his research with similar outcomes. Unfortunately, scientists do not yet know which children will recover, only that some recover.

We do know that intervention must start early, it must be intense (40 hours of therapy per week), and that it must last for 2 years or more. We also know that therapy must address all areas of development including speech and language, social and emotional skills, gross and fine motor, self-help and adaptive skills, as well as academic skills.

ABA is an appropriate treatment for children with autism. In fact, 32 states have legislation requiring certain types of insurance to cover ABA therapy. Check

out this resource to see if your state is included.

You may also find some of the work by Dr. Fein helpful. She has no association with ABA whatsoever and she has published several papers on this topic as well.

Finally, we know that many children on the autism spectrum are sick. The illnesses include GI disease, food allergies, mitochondrial disorders, and other things. Thus, in addition to using ABA to teach your child, you will need to include medical support to address any underlying medical condition that your child may have.

I am sorry that your child has been diagnosed but I hope that you will pursue active treatment as soon as you possibly can.

If you have a question email askmissy at applied behavioral strategies dot com.

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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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