Recovery From Autism: New Scientific Evidence Of Optimal Outcomes

Thursday, January 17th, 2013

There is a long history of reports of small numbers of individuals with Autism Spectrum Disorder (ASD) experiencing recovery – meaning they no longer met diagnostic criteria. While such claims have generated controversy over the years, a new study provides the best scientific evidence documenting recovery from ASD in a small number of individuals. 

A team of researchers (led by Dr. Deborah Fein at the University of Connecticut) identified 34 individuals with suspected recovery who had a clear documented history of ASD, but no longer met diagnostic criteria for it. By comparing this group to two other groups – a high-functioning ASD group (44 individuals), and a typical development group without ASD (34 individuals) – the study reported these two key findings:

• The 34 potential recovery cases not only no longer met criteria for ASD, but in fact lost all symptoms of ASD
• Their social and communicative functioning was within the nonautistic range (and as a group similar to the typical development group)

The study authors suggested the phrase “optimal outcome” for these individuals to convey the idea that their overall functioning across multiple domains was in the normative range. There was a wide age range in the sample – from 8 to 21 years – and the conclusion was that some children with a diagnosis and history of autism may in fact go on to experience an optimal outcome later in development.

More reports will come in the future from this research group on this sample. In particular, they will be analyzing collected data on intervention history to see if there were commonalities in those who experienced an optimal outcome. They will also be looking at psychiatric data to examine the possibility that some with optimal outcome experience anxiety, depression, and impulsivity. Based on the data published to date, the group with optimal outcomes were reported to have milder symptoms of ASD when they were younger (but only in terms of social symptoms, not communicative or repetitive behavior symptoms), and IQ scores in the high average range. But more work will be done to see if there are clear factors which are predictive of optimal outcome.

While every child with ASD will not have an optimal outcome as defined in this study, the larger message is that the developmental trajectory of kids with ASD can be modified. We’ve seen over the past year stories about how as many as 10% of youth with ASD may “bloom” by age 8 and lose many of the debilitating symptoms. A recent study reported “a small breakthrough” for some kids with ASD (achieved with the Early Start Denver Model intervention) that resulted in “typical” brain activity activated by viewing faces. The bottom line is that whether small or big steps are made via intervention, the parents and intervention specialists who put in extraordinary time and effort will improve the lives of kids with ASD. The two key considerations continue to be early diagnosis, and early intervention. To that end, it’s critical that parents know the early signs of ASD:

The 7 Early Signs of Autism Spectrum Disorder That Every Parent Should Know 

Symbol of autism awareness via Shutterstock.com

More Questions And Answers About Applied Behavior Analysis (ABA)

Monday, April 30th, 2012

If your child has been diagnosed with Autism Spectrum Disorder (ASD), there is a good chance that you will be considering – or evaluating – Applied Behavioral Analysis, or ABA. This is the third of three question and answer sessions with Lauren - who was featured here last December - who offers us the combined perspective of  a mother of a child with ASD and a professional who works with children with ASD. Click here to see the first post that describes ABA; click here to see the second post which gives an example of ABA.

Does it help all kids or just some?

ABA can be used with anyone with or without disabilities at any age. It is often used for kids diagnosed with ASD (see http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba). No other method I’ve researched has been shown to have the same ability to develop someone’s true potential as ABA.  Goals vary from person to person and depend on age, interests, and ability.  It’s important to keep your goals simple, measurable, realistic and easy to follow.  In a perfect world, ABA for children with ASD needs to be practiced 40 hours a week with a therapist and continued with family and friends 24/7.  Discrete trials are used primarily for students in the beginning to learn new concepts within a controlled setting.  After they master the goals, then the other ABA techniques are used to generalize the new concepts in different environments and with different people.

I believe ABA principles such as positive reinforcement should be practiced all the time.  I always reinforce the positive and redirect the negative behaviors with my children or my students. It’s important to remain even toned and only show lots of emotion when a positive behavior is exhibited – try not to yell or get upset at a negative behavior.  This could incite the child and even make them want you to do it again.  Negative attention is still providing attention and for a child wanting attention.  Also, what could be acquired quickly by one student may take a long time with another student.  Always think what’s best for the child’s ability.

Is it hard to do?

The ABA Therapist should make the objectives very clear and manageable. If you don’t follow the directions exactly as written, then the student or teacher may not understand the target behavior. If you are using ABA to change behavior in a more natural setting, it’s important to remain consistent with the therapist’s directions.  In that sense it is very demanding and frustrating since a behavior that you are trying to change may being reinforced by another family member.  Also, be aware of the student’s likes and  interests.   They are constantly changing. So, using a reinforcer that works with one person won’t always work on another.

Are there other approaches to consider?

When my son was first diagnosed, I thought he should be put with lots of typical children so he could learn by imitating appropriate behavior.   However, children with ASD are lacking prerequisite skills to know how to learn.  If you can place a child with ASD in a typical classroom with an aide, you cannot teach the child the skills needed to sit, attend, and understand his environment.  If you place them in an individualized program where the ABA therapist teaches appropriate behaviors prior to age of 5, the student will hopefully have developed the prerequisite skills to be able to join a typical classroom one day. Sure, there are lots of other approaches out there, but ABA is a scientifically proven method that works with kids diagnosed with ASD and can have a substantial impact on their development.

Symbol of autism awareness via Shutterstock.com

An Example of Applied Behavior Analysis (ABA)

Monday, April 30th, 2012

If your child has been diagnosed with Autism Spectrum Disorder (ASD), there is a good chance that you will be considering – or evaluating – Applied Behavioral Analysis, or ABA. This is the second of three question and answer sessions with Lauren - who was featured here last December - who offers us the combined perspective of  a mother of a child with ASD and a professional who works with children with ASD. Click here to read Lauren’s explanation of what ABA is and how it works. 

Can you give a brief example of some of the behaviors that you can change using ABA?

Here is an example that doesn’t use discrete trial teachings, instead it utilizes a social story, visual countdown, schedule, positive reinforcement, and functional communication training.  Jane,  4 years old, loves to play with her sister Alexa, 6 years old, but Alexa has homework to do at her desk. Jane starts crying because she wants to play with her sister. Alexa tells her to stop crying but Jane doesn’t, instead she cries louder.  Alexa stops doing her homework and plays with Jane. This is a behavior.  Behaviors can be changed!

To figure out the behavior as in the example above, one needs to:

1. Describe what the behavior looks like – in ABA this is done using the concepts of antecedent, behavior, and consequence. The antecedent is – Alexa sits down to do homework at the desk, Jane says play with me, Alexa says she has homework to do. The  behavior is – crying. The consequence is – Alexa stops her homework and goes to play with Jane.

2. Determine what is the function of the behavior (crying). In this case, it is to get attention.

3. Explore what did Alexa do before and after and what should she have done differently? Alexa did not give Jane enough notice that homework comes first, then playtime.  Jane didn’t want to wait.

An ABA therapist would use the definition of the behavior – crying – and track how many times that behavior is being seen and all the different contexts in which it can be observed.

An example using ABA to provide an appropriate replacement for Jane’s “crying” due to wanting attention would be to write a quick social story, using the Berenstain Bears as a prototype.  In the story, there will be an explanation that sometimes old sister Alexa has homework to do.  While Alexa does her homework, list some activities that Jane can do to keep herself entertained.  These activities need to be motivating and something she can do alone.  Also, in the story, it’s important to mention how to replace the crying. For example, if during playtime, she has a hard time waiting she can use her words and say,”waiting is hard” or “how much longer”?   Also, Jane can have a visual schedule written  - 1. homework  2.  play with Alexa – with a visual countdown that Jane can cross out as the time goes by.  The schedule provides Jane a sense of control and understanding that there is an end to the waiting. Throughout the countdown, a smaller positive reinforcer such as a sticker can be given to Jane to maintain her appropriate behavior. In addition, verbal reinforcers like “I like how you are waiting for me, 4 more minutes, then I will play with you” can be used as well.

By  providing more appropriate proactive strategies for Jane, with practice and patience, the behavior will change!

Symbol of autism awareness via Shutterstock.com

What Is Applied Behavior Analysis (ABA) And How Does It Work?

Monday, April 30th, 2012

If your child has been diagnosed with Autism Spectrum Disorder (ASD), there is a good chance that you will be considering – or evaluating – Applied Behavioral Analysis, or ABA. This is the first of three question and answer sessions with Lauren – who was featured here last December – who offers us the combined perspective of  a mother of a child with ASD and a professional who works with children with ASD. 

What is ABA?

Applied Behavioral Analysis can be described as the science of applying principles of behaviorism – which focuses on reinforcement of behavior – to make meaningful changes in an individual’s life.  The basic premise is that reinforcement can be used to shape behaviors that are desired. All ABA methods also require that data will be collected to determine that the intervention was responsible for the change in behavior, that the results were significant, and that the skills generalized across contexts.

How does it work?

If you get a positive reaction after you do a behavior, you will most likely repeat the behavior.  For example, if you walk in to work and a coworker compliments your shirt, most likely you will wear the shirt again. Wearing the shirt again or not again is based in part on the reaction of someone else.  That’s a change in behavior based on reinforcement. In the ABA model, behavioral reinforcers are given to reward a desired behavior (e.g., making eye contact). Reinforcers are positive (think of them as rewards) – the focus is on eliciting and shaping desired behaviors in a step-by-step and systematic way. A number of reinforcers can be used. Negative reinforcement is not used –  behaviors that are not considered desirable simply do not get reinforced.

People are typically most familiar with discrete trial teachings – which are trials that are repeated with a specific beginning, middle, and end (or antecedent, behavior, consequence).  A very small amount of information is given and the student will be reinforced immediately after the behavior building upon mastered concepts. However, there are many other wonderful variations that use ABA principles to change behavior, including: writing social stories, positive behavior supports, errorless teaching, shaping, prompt fading, visual schedules, transitional countdowns, differential reinforcements, modeling appropriate behavior, and task analysis.   For example, The Berenstain Bears books are perfect examples of social stories, which is an approach used in ABA.  They discuss an inappropriate behavior in the beginning and how to replace with an appropriate behavior successfully.

All of the above ABA techniques can be used to change a behavior of a child to improve their life. That’s where ABA is very different from what most people think – as they may assume it is only discrete trials, but it’s not.  A true ABA therapist knows how to utilize all the different methods and does not only use discrete trials. This process is guided of course by the child’s age and cognitive level of functioning. But no matter what the mix, all of the variations use the principles of ABA to help kids with ASD continually develop new skills.

Symbol of autism awareness via Shutterstock.com

Is Maternal Obesity Linked With Autism? Let’s Take A Closer Look At the Study

Monday, April 9th, 2012

You may have seen or heard this morning about a new study that found links between maternal obesity and risk for autism. Here’s a breakdown on the study, the findings, and the take-home message.

What Did This Study Do? The research – published in Pediatrics – explored links between maternal metabolic conditions – specifically diabetes, hypertension, and obesity – and neurodevelopmental disorders in early childhood – particularly autism spectrum disorders (ASD) and developmental delays (DD). The sample was informative – it is a population-based sample in California that is participating in a very large investigation. That said, it’s important to keep in mind that maternal history of diabetes and hypertension during pregnancy, and obesity prior to pregnancy, were gathered retrospectively via a phone interview with the mother when kids were between 24 and 60 months of age, and also from medical records when available (which they were for over half the sample). I highlight this to emphasize that this is far from a definitive study  - not that it’s a bad study, just that it is more like the first word, rather than the last word, on this topic. Do note that the available data suggested that moms could reliably report retrospectively (when they compared their responses to available medical records) – but still, this is not as informative as a prospective study. Moms were selected based on the profiles of 3 types of youth – those with ASD, those with DD, and a general population (GP) control group with neither condition. The researchers then set out to examine if there were links between the maternal metabolic conditions and these three groups of kids. So keep in mind here that this is a statistical test of association, not a more controlled experimental test that can, if you will, “prove” the associations. These kinds of studies are critical first steps to determine if future research is warranted – and not the last steps that convince the scientific community that there is a causative process at play.

What Did They Find? Keeping all of the above in mind (you have to in order to make sense of the results), the study did find a statistical link between a mother’s report of having any of the metabolic conditions and the odds of having a child diagnosed with ASD and DD. It was a moderate statistical finding (meaning statistically significant but clearly not the only factor that contributes risk for ASD and DD). To give you a sense of the data, here are the percentages of mothers with a metabolic condition, broken down by youth diagnosis:

ASD: 28.6% of the mothers

DD: 34.9% of the mothers

GP: 19.4% of the mothers

So you can see how this is a moderate statistical link – for example: 1) the majority of moms of kids with ASD did not have any metabolic conditions, 2) almost 20% of the moms of kids from the general population control group did have a metabolic condition; and 3) the finding comes from the somewhat elevated rates in the ASD and DD groups compared to the GP group. More fine-grained analyses showed that obesity in particular was associated with ASD (after controlling for other factors) – but that diabetes had an effect on a number of cognitive and social outcomes.

What’s The Take-Home Message? There are two messages from my point of view. First, from the perspective of science, the study authors devote most of their attention in their discussion of the results on the biological mechanisms by which maternal diabetes – not maternal obesity – may impact brain development in babies. This is an important avenue for future research and a key contribution from the study. Second, from the perspective of being a prospective parent, the real take-home is that management of maternal metabolic conditions is not only critically important for a number of health outcomes, but also for promoting brain development in the early years of life. Rather than focusing on metabolic conditions as “causes” of disorders, it’s probably better advised to consider them as modifiable influences on development. Maternal obesity is important in this sense because it is one of many factors associated with diabetes – though keep in mind that gestational diabetes can of course occur without obesity. Diabetes – whether in place prior to pregnancy or occurring during pregnancy – is important because it might have biological influences on brain development. So this study just reinforces the bigger message that I hope everyone is aware of – that pregnant women should get vigilant care for potential or existing metabolic conditions during pregnancy, especially diabetes. It’s critical for the well-being of both mom and baby.

Image of word “diabetes” via Shutterstock.com