2009 Autism Intervention Conference

[Eeyores Butterfly]

Since Thursday I have been attending the 2009 Autism Intervention Conference hosted by the Thompson Center for Autism and Neurodevelopmental disorders. It's been very interestesting so far. I've attended sessions on the service provider model in California where autism services are an entitlement throughout the life of the individual, assistive technology, visual strategies and supports, navigating the special education process, cognitive behavioral intervention in autism, and bullying of children with ASD.

Of particular note was the keynote speaker this morning. Her name is Dr. Landa and she has been doing research since the mid 90's on the early identification of children with ASD. It used to be that you could not diagnose autism until 36 months. She has been doing a longitudinal study in which she studied siblings of children with autism and children who of no highe risk than normal for developing autism. The studied the babies at 6, 14, 18, 24, and 36 months. The performed the Early Learning Composite on all children, and several autism assessments including ADOS on children 14 months and older. Her finding were astounding.

They identified two groups of children with autism: early diagnosis (diagnosed at 14 months) and late diagnosis (diagnosed after 14 months). They found that 100% of the children had visible motor problems even at six months of age. This included low tone (including neck tone), atypical postures, repetitive movements, and passivity. At six months there was no difference in the ELC of the late diagnosis and neurotypical babies, but the early diagnosis babies were significantly lower. Early diagnosis babies saw their ELC fall one standard deviation between 6 months and 36 months at a steady rate. Of particular interest ws the late diagnosis crowd.

Until now, many people have said that in the regressive form of autism seems to appear out of nowhere. One day the child is neurotypical, the next they are autistic. This study showed that the regression of the ELC was a steady regression from the time of 6 months of age until 24 months of age. What happens is they no longer progress at the rate of their peers which lowers the ELC, and some even lose skills that they had. However, it is not an overnight phenomenon. 100% of the late diagnosis children were flagged as needing careful monitoring at the 14 month screening.

After the talk I asked her about the vaccine debate and if the chidlren in the study had been vaccinated. The study was started at the height of the vaccine controversy and she stated that many of the kids who developed autism had not received any vaccinations. There was no correlation between vaccination rate and rates of autism (although the sample size was not very large).

 

[Eeyores Butterfly]

She also showed us videos of the different babies at various points. Some of the early signs of autism aside from the motor difficulties were:

-lack of traidic gaze. Triadic gaze is the ability to look at an object, a person, and back again (or person, object, person). Children were identified as having autism lacked triadic gaze at 6 months.

-"sticky' attention. Neurotypical chidlren display the triadic gaze mentioned above, and when presented with a variety of objects will shift their attention between objects. One video she showed was of a 14 month old gathering objects, bringing them over to his mom, etc. She showed us a contrasting vidoe of a child with late diagnosis doing the same task at 14 months. The child maintained attention only on one object and resisted all attempts by the mother to socialize. He was fixated on that one object.

-Another task she showed us was presenting a simple cause and affect relationship to 6 month olds. The kids were given a switch that when moved in a variety of ways caused a toy to light up. Neurotypical children were able to quickly establish the relationship between moving the switch and the toy. Furthermore, they looked to the researcher and the mom and back at the toy to confirm that others saw what they saw. Children who were later diagnosed with autism did not establish the cause and effect relationship. In one video she showed us, the baby was completely fixated on the switch and did not even look at the toy when the toy lit up.

-Abnormal social interactions. When playing peek a boo at six months old, children who were later diagnosed with autism displayed abnormal repsonses. One baby had a lot of unusual posturing. Another baby, while smiling and moving her limbs, had a complete lack of vocalizations. Lack of vocalizations were the most common. Early diagnosed autism babies did not interact with the mothers and avoided eye contact. In another one they showed a mother trying to get her baby to look at her. She was in front of him talking to him. At one point she reached out to touch him and he displayed a very exaggerated startle response which was most definitely abnormal.

-Another video showed a baby that was given a set of blocks. Neurotypical 14 month olds would bring the blocks over to the mom when she held out her hand. One baby who was diagnosed at 14 months that she showed us ignored attempts by the mom to gain his attenion. She rolled another block to where he was and he picked up his block and actually walked away from her.

-Maintained attention on a non functional behavior. They brought a child into a room to perform an assessment with blocks. The boy (14 or 24, can't remember exactly) saw the pencil and paper on the table and immediately picked it up. The researcher tried to trade him for the blocks and he would not give it up. She finally had to take it from him and he immediately ran from the table and displayed crying and handflapping. At this point the child had not been formally diagnosed.

It was very interesting, and I thought some of the people on here would find it interesting. It certainly gives doctors and parents some signs to be aware of so that they can start interventions at a much earlier age if need be.

 

[KirstenB]

This is very interesting. Our younger dd Zoe was dx'd at 21 mths. I didn't realize autism had been shifted over the years to a spectrum. I was a little familiar with classic (Kanner's) autism, but wouldn't have known these signs you're describing back then. Some of them are fairly subtle.

I wish there were a way to get the word out better to the general public, especially parents of kids under the age of 3. If our pediatrician hadn't really pushed me, I would have just thought Zoe was a little off. I know some of the websites like Autism Speaks have videos of young kids with autism. Again, I just wouldn't have had autism on my radar at all.

Anyway, very interesting stuff. Thanks for sharing.

One thing that really jumps out at me was that 100% of kids had motor difficulties. Again, I had no idea. Zoe had low tone, and at 11 mths started EI for that, but really has excellent fine motor skills. I was asked repeatedly if she had difficulty feeding, but none whatsoever.

 

[Eeyores Butterfly]

Yes Kirsten, it was a very interesting weekend. Today I attended a panel with adults with autism and their family members. It was very interesting hearing their perspective and seeing the possibilities out there. The parents had 25 year old twins who were diagnosed at age 4 and both now have college degrees and one had a full time job until recently (laid off due to the economy). Another man with autism was in our bullying workshop last night and he had two master's and works in a library. It was very neat to see some older people with autism who were living successful lies. (The one from the bullying workshop is married). I think it really gave the parents there hope for what the future holds.

 

[BeckyScott]

I wish I would have known about this. Not that I could have gone, really, but I'm not that far away.

Does Thompson Center do studies a lot? Maybe in the future we could take part in one. Oldest DS has his eval with them this summer, I'll have to ask.

I know with youngest DS, in retrospect the signs were there from very early on, but it wasn't in my radar either. His ped noticed something at 18 months and we went from there. So by most standards, he started getting intervention pretty early. Although the formal diagnosis wasn't until a year later, he was already receiving appropriate therapy.

What I hear a lot from parents is "he was an easy baby". And I would say that too. Since I was also dealing with oldest DS who was 2 1/2 and later of course would be diagnosed ADHD, I had my hands full with him. And so I thought I'd "lucked out" because youngest DS was soooo easy. He'd entertain himself for hours staring at the ceiling fan. He didn't demand to be held all the time. But you know when I'd say something, I'd get told "well all babies like to stare at ceiling fans". His one big major problem (and it was major) was the eczema. (he was on soy formula, and as you can guess, once he was off the bottle it cleared a little, once he went gfcf it cleared a little.... )

It all makes perfectly good sense when I look back at it. I also remember like it was yesterday, I told our ped we were taking DS for further eval (his initial eval) and the ped was the first one that said "the A word". I was completely totally shocked. Went home and got on the computer, and I could go down the checklist and he was almost all of them, and I knew he was right.

I suspect with the proper information, DS could have been spotted earlier than he was. In his case, there wasn't any regression, although I do believe that can happen. The eczema showed up at about six months. So he was born with a bad immune system, so the autism was already started, or any regression showed up so early that it wasn't noticable to me.

 

[Beccabunny]

Has Dr. Landa's study been published? If the number of children in the study is samll, it's hard to believe that "many" children were unvaccinated. The vaccination rate in this country is high (although dropping) so to get "many" unvaccinated children for a study they would likely need to seek out children from a population that typically does not vaccinate. There has not been one well-designed study of vaccinated versus unvaccinated children.

 

[BeckyScott]

Becca, this is just a guess, until EB gets back... but Missouri does have a fairly decent Mennonite population.

 

[bookwormde]

Thanks for the info on the conference.

There is actually an NIH coordinated program on early detection studies, so it is my guess that this program is a satellite portion of this by the description. Yale has been working on a core program on this for a few years and now it is being done in various forms thought the country. In Philadelphia they are working with an active scan version of the screening to see if it has applicability. My understanding is that they are trying to develop a multifaceted approach so no 1 or 2 falls positives or negative will be definitive.

This is important to the genetic mapping since the indicators happen before any “social contamination” which might overly broaden the real world indicators.

It has been a little while since I read any of Dr Landa work but if I remember correctly there had also been some really significant differential analysis as to those children whose parents had decided to do early OT intervention and those who did not, and the reduction in manifestations. Did Dr Landa talk about any of that?

bookwormde

 

[Eeyores Butterfly]

Has Dr. Landa's study been published? If the number of children in the study is samll, it's hard to believe that "many" children were unvaccinated. The vaccination rate in this country is high (although dropping) so to get "many" unvaccinated children for a study they would likely need to seek out children from a population that typically does not vaccinate. There has not been one well-designed study of vaccinated versus unvaccinated children.

This info was from a variety of studies- some published and some currently in the process. My guess is that because the beginning of this study took place during the height of the vaccine scare and many parents already had one child with autism (since the high risk cohort was siblings of children already diagnosed) so they were more likely to not vaccinate their children than those from the general population. Also, I don't know if she did any stastistical analysis on the vaccinated vs. unvaccinated, I think it was more just her observation since that was not the focus of their study. They mostly interested in seeing the progression of the "regressive" form of autism.

Becky: Right now they are looking for participants in a gene study I know. Other than that I'm not sure, but if you go to http://thompsoncenter.missouri.edu they have a link to their research and you can see what is in the works.

And I think you're right about the easy baby remark. That seems to be a sign because that is the sticky attention she was talking about. I think a great quote that came from the parents panel is that childrne with autism do what neurotypical children do, they just do it more. So yes, neurotypical children stare at ceiling fans, but they don't stare at them to the point that they are completely ignoring all other stimuli in the environment, and they allow their gaze and attention to wander. A child with autism won't.

Bookwormde: No, Dr. Landa did not talk about any of the early interventions. The focus of her speech was early signs of autism. She had about an hour so we were running out of time just with the topic of the speech!

 

[BeckyScott]

EB, thanks for the link. It looks like the genetic study is the only thing they have going right now, and it's specifically for siblings where one child is ASD and one isn't. Since we're still iffy on the possibility of oldest DS being Aspie, I don't know that we'd qualify. However, I will certainly keep checking their website. And when we go there in July, I'll make sure they know I'm interested if anything rolls around we're qualified for.

Columbia is the closest mall for me. Gotta use any excuse you can to get there.

 

[Eeyores Butterfly]

My folks live in Jeff so I go to Columbia all the time. It's cool that there is somebody in my neck of the woods. Maybe we could meet up sometime.

 

[TheZue]

That's interesting. I'm glad they are looking at the body language. My son has 'unique' body language/posturing compared to his NT classmates, but when I see other ASD kiddos on TV they have very similar posture in terms of how they hold their shoulders and wrists and how subdued their body language is. As much as everyone hates the Rainman example Dustin Hoffman had that almost dead on.

I also like that they are putting out more examples of what early joint attention looks like. My son was very 'social' in that he enjoyed being around people, had eye contact, and would check out whatever we were doing; but he never brought us stuff and put it in our hands like our second does or checked if we were looking at the same thing...he just assumed we were looking at whatever he was and still does. Now if they can get more of these examples out in the literature they put out to warn parents.

And another vaccination note, my aunt works in a Childrens hospital in the Spina Bifida unit. There is a child there who also has regressive autism that was never vaccinated. I think we'll see more and more of that as the vaccination rates have been dropping.

Yes Kirsten, it was a very interesting weekend. Today I attended a panel with adults with autism and their family members. It was very interesting hearing their perspective and seeing the possibilities out there. The parents had 25 year old twins who were diagnosed at age 4 and both now have college degrees and one had a full time job until recently (laid off due to the economy). Another man with autism was in our bullying workshop last night and he had two master's and works in a library. It was very neat to see some older people with autism who were living successful lies. (The one from the bullying workshop is married). I think it really gave the parents there hope for what the future holds.

And thank you for posting this. I wish there were more of these stories out there because I personally find the worst part of parenting an ASD child is the fear of what their future holds, it will keep me up some nights. This at least adds some hope to what he may face.