Empowering parents to engage in early autism inteventions

Ooh Ooh Ooh! They Finally Did It!

I have been waiting a while for the paper I am going to talk about in this post to come out. I had been seeing the data as they were coming in when I was a postdoctoral scholar at the MIND Institute in Sacramento (where Drs. Sally Rogers and Sally Ozonoff do their research). At this point I need to make clear I know and happen to like and respect Drs. Rogers and Ozonoff, and I have a general positive interpretation of a lot of their research.

The actual paper I am going to use as a springboard for discussion is entitled: “Autism Treatment in the First Year of Life: A Pilot Study of Infant Start, a Parent-Implemented Intervention for Symptomatic Infants” by Sally Rogers and colleagues at the MIND Institute. The paper is available in the Journal of Autism and Developmental Disorders and at present can be freely downloaded Here.

A Pilot Study

With regards to the paper, here are the limitations. I want to state these explicitly so I can better explore why I think the paper was actually a great first step toward a new way of potentially treating autism.

First, this was a pilot study. It was never intended as a large study to make broad conclusions, but rather a proof of principle to rationalize larger future studies. In the pilot study, there were 7 highly symptomatic infants ages 7-15 months of age. There were 4 matched control groups: a High Risk control group made up of children at high risk of autism due to being sibling to individuals with an autism diagnosis. a Low Risk group made up of children with no siblings with autism, and an Autism Outcome group made up of children that had siblings with autism but also had themselves received an autism diagnosis by the end of the study period. There was also a comparison group of children whose parents did not choose to enroll in the study (Declined Referral group).

Being a pilot study, the number of participants was rather quite low. The authors, however, in the discussion discuss a strategy for wider enrollment for the second phase of these experiments. The present sample all lived within 1 hour of Sacramento, so the data may be difficult to extrapolate to a larger American population. Later studies are likely going to involve multiple site multiple investigator studies to overcome this limitation. Additionally, Dr. Rogers’ lab has been very proactive in developing methods and a framework to provide training to parents and consultations online, potentially allowing them to overcome barriers of distance.

So What Did They Do?

Briefly, in this experiment Rogers and colleagues trained parents in the skills necessary to provide behavioral intervention to their infants at risk of receiving a diagnosis of autism. These interventions were explicitly derived from the Early Start Denver Model (Link) that Dr. Rogers has been developing. They verified that the parents were compliant with the training and had mastered the methods, providing “booster training” for parents that found the methods difficult. They looked at the children with the Mullen Scales of Early Learning, the Autism Diagnostic Observation Scale (ADOS), Infant Toddler Checklist, and Autism Observation Scale for infants (AOSI).

For each child, the investigators provided a consultation wherein they identified 6 key areas for each child to target with the parent intervention. They developed the intervention and trained parents to carry it out. Parents then provided the treatment to their own children.

So What Did They Find

Rogers and colleagues found that there was a net benefit to the parent intervention. At the beginning of the experiment (ages 7-15 months of age), the treatment group and the Declined Referral groups had higher scores on the AOSI (both number of markers as well as total score). At 18-36 months of age, however, the treatment group had lower AODS scores than the Autism Outcome group and a trent toward lower ADOS scores than the Declined Referral group (Which means there was still no statistical difference, but the difference was approaching the predefined statistical cutoff for significance). The treatment group was still showing a greater number of autism-like behaviors than the typically developing children in the High Risk and Low Risk groups.

In English, what this means is that, at least in this pilot study, it appears the parent intervention provided a benefit. By no means does this mean the early intervention is a cure for autism, as 2 of the children in the treatment group received diagnoses on the autism spectrum, this was a lower number than the Declined Referral group, which had 3 diagnoses (and a fourth with an Intellectual Disabled diagnosis).

My Personal Take

I find these data important for a very simple reason. I think parents need to feel empowered and they need to be given the tools to work with their children themselves. Far too often in my not so humble opinion, parents are left to feel their only recourse is tears when they see a child develop (or express) autism-like symptoms. This feeling of impotence only leads to anxiety, self blame, and depression-none of which are helpful. If all that is required to feel empowerment is 10-12 visits to a clinic one hour away (or in the future a Skype or FaceTime conversation once a week for 1 hour with a trained therapist), then that is well worth it.

Also, and perhaps most importantly, the interventions from Dr. Rogers’ lab tend to focus on social and joint attention. To grossly oversimplify, the intervention involves the therapist (or parent) engaging with the child and inserting themselves in the child’s attention. They develop reciprocal games and take advantage of the child’s fixation to make the other person an important part of the game. This also increases the opportunity for the parent to engage in direct communication and speech directed to the child, not just talking at the child. A bunch of videos explaining this better than I can can be seen Here. Developing this kind of social attention between child and parent is essential. Not just for the child but also for the parent to feel they have a clear and “normal” connection to their child, regardless diagnostic status. This connection is what I assert will help the parents feel empowered rather than helpless.

Believe me (and I speak here from experience) if a parent or sibling feels they have the ability to engage with their child with autism, they will. We just have to give them the skill-set and confidence to do so.

I would love to hear your thoughts on this!

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