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Archive for October, 2016

You may have seen it. The headline that says, “super-parenting improves children’s autism.” Besides being grammatically incorrect, it’s insulting. The implication, of course, from the headline is that parents who do not have super abilities or super skills ,can’t help their child. It sets an unhealthy expectation for parents who are already struggling to help their child. Worse, based on the feedback I have received, it has been hurtful to many parents.

If that wasn’t bad enough, the article headline went viral and the text itself doesn’t even properly represent the study it reports on. It’s time to set the record straight about the findings.

The scientific findings, published in the journal Lancet, described a follow-up of families who participated in an early intervention study published a few years ago.  That study used what is considered the gold standard of treatment research, a randomized clinical trial and the results were taken very seriously by the autism community. While the intervention focused on improving communication and did improve interaction between parents and children, it did not improve autism symptoms so the researchers concluded that it was not helpful. It wasn’t that it did nothing; it just didn’t do what they had hoped it would. Other studies, on the other hand, had shown that similar type interventions improved autism symptoms in the first few years after a long-term intervention.  So the door was not shut on these parent – delivered interventions.

Based on the promising but non-significant findings of the original studies, the original researchers were not going to give up.  They kept following these toddlers through school age to find out if intervention during this crucial developmental period of toddlerhood was able to produce improvements over the long run. Remarkably, it did. What was not seen immediately following a year long intervention was seen six years later. The results showed improvement in social communication and repetitive behaviors, which is huge to families. This was not a reversal, not a cure, but some of the the strongest evidence to date that supporting social communication in toddlers with autism changes the trajectory of autism symptoms over the long term.

The parent component was used because these toddlers spend most of their time with their parents. The skills that they learn at these early ages need to be generalized as much as possible so they need to be delivered in different settings: home, bedtime, bath time, at the grocery store, it’s an around-the-clock process. Because parents are involved, the findings of parent-mediated interventions do not mean that most parents are normally doing anything wrong. Or that without this specialized training to help their child, they are useless. It means that during preschool, intervention needs to be intense. It needs to be done in multiple settings. Clinicians can only do so much. Teaching parents to work on skills with their toddlers is crucial. Parents may think they know it all, but they don’t. They need help. They have all sorts of different situations with work, home, other children, family members and living situations. That doesn’t make them less than super. It makes them human.

One of the things that continues to push lawmakers and insurance companies towards coverage of these interventions is whether or not the gains made directly at the end of the intervention period can be maintained later. This is only done through a longitudinal design where a person is followed for many, many years. They are rare but they have been done. The important findings of the study published recently were that the improvements seen right after the end of the original study were sustained six years later. These improvements were seen in social communication, as well as in repetitive and restrictive behaviors, i.e., the core features of ASD. Early intervention can make a lifetime of difference. This is the first study to demonstrate that using this type of research design, which clinicians tend to take the most seriously. That’s a powerful message and it shouldn’t be lost underneath terrible headline language.

– Dr. Alycia Halladay, Chief Science Officer of the Autism Science Foundation

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Give a Spit for Autism!

The Autism Sisters Project seeks to understand why four times as many boys are diagnosed with autism vs. girls. This terrific video was produced by Bill Shea. To learn more, visit www.autismsistersproject.org. To participate, Give a Spit!

ASF Sisters Project from Autism Science Foundation on Vimeo.

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