Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Neurodevelopmental

Eye Tracking

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Yesterday was the second portion of Cubby’s 24 months data point in the sibling study.  We’ve been involved since Cubby was 10 months old.  Each time he is subjected to several hours of testing, and it is intense for both of us, but definitely for a good cause.  The work by the team at Kennedy Krieger is making huge strides in early detection of autism spectrum disorders.  Though exhausting to go through, it is exciting to be part of such worthwhile research that will ultimately benefit countless families.  There are many different developmental assessments.  Some of them are widely in use, such as the ADOS or Peabody tests, but others are still experimental.

This time Cubby took part in a fascinating new study assessing eye tracking in infants and toddlers at risk for autism.  He sat on a chair with me, with special cameras trained on his eyes which followed every movement as he watched a monitor.  To get him comfortable, we initially watched puppets and animals, then the testing began.  We were shown images of geometric shapes with slowly moving patterns, interspersed with clips of faces.  In addition, extra targets popped up to see how well the eyes would saccade between the images.  In between there was a video clip of a baby putting blocks in a container.

Cubby was very opinionated about what he saw, and felt the need to comment on everything.  I don’t know where he gets that from!  He was much more interested in the toys on the foreground of the video clip of the baby- trains and trucks.  When that part was over he demanded to see more!  He also was a bit creeped out by some of the faces he was shown.  He repeatedly announced that he didn’t like one man’s face in particular.  Oh yes, he was very vocal about that.

After the testing was complete, the research assistant came around to explain the results to us.  (Just initial findings, like all the testing it is reviewed and scrutinized at length).  Only at that point did I realize that the man’s face which Cubby found so objectionable bore a striking resemblance to that of the one conducting the experiment!  Oh dear.

I was shown the targets of Cubby’s eye gazes throughout the testing, so I could see which images he looked at the most.  He showed a strong preference for faces over the patterned shapes, and particularly the eyes and mouth areas.  A very positive result.  And of course, he had a strong preference for looking at the trains and trucks, which hardly surprises me at all (special interests!).  In spite of that, this particular experiment gives me no real concern.  So far Cubby has excellent eye contact, even with strangers.

Though it isn’t possible, I’d love to have seen what the results would have been for Pudding.  She is very interested in faces, choosing to draw them over and over, and look at photos on her iPad or in albums.  I wonder how well she’d have been able to shift from one image to another. This test may be able to find eye tracking difficulties in young infants.  The question now is if it is consistently reliable in detecting an issue in children who are subsequently diagnosed with an autism spectrum disorder.  This is where the siblings come in.    The study we are involved in recruits children under the age of 18 months, but there are others looking for pregnant women who already have a child with autism.  The earlier the detection, the earlier the intervention.

Ultimately, this could be an excellent non-invasive screening tool for the general population.  The difficulty with many current assessments is that there is a considerable amount of researcher bias.  Some children may be found to meet the criteria with one diagnostician, but not with another.  A screening tool that would measure in a more objective way would be incredibly useful.  I could see such apparatus in a pediatrician’s office, being used to screen every infant who comes into the clinic, deciding which ones require further assessment.

They just might want to find different faces for the more…selective participants.

Written by Spectrummy Mummy

April 8, 2011 at 7:01 am

Trigger

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Trigger_mechanism

Image via Wikipedia

I have been reading some excellent blog posts by some great bloggers recently that have got me thinking, which is the whole point, I suppose.  Firstly, Laura at Life in the House That Asperger Built gave her take on the recent news that the court case involving a girl with a rare mitochondrial disorder developed symptoms of autism following vaccinations had been settled in her favour.  I’ve talked about the fear I felt when I took Cubby for his MMR, but Laura gives an informative and analytical post that is the antithesis of my wishy-washy vague approach to the whole vaccine debate.  It is excellent.

Then in Welcome to the Mad House, my friend Fi talks about her take on the issue of environmental triggers.  And again here.  It is both tongue-in-cheek and fascinating.  There subsequently followed a very interesting discussion in the comments about autism, anxiety and the influences of environmental factors.  While I firmly believe that Pudding’s ASD is a result of genetics, that she was born this way, at the same time I do think that there was also an environmental trigger.  If I think that she had an environmental trigger for her variety of autism, that does mean I’m open to the idea that there are other triggers, and other varieties of autism too.  There probably is an allergic kind, a premature/ difficult birth kind, an autoimmune kind, and other exposures too that would tip the balance in somebody already genetically prediposed.

So what is Pudding’s story?  For the first 18 months to 2 years of her life, she developed just like other kids her age.  She met her milestones right on target, and never gave her pediatrician any cause for concern.  Having said that, from birth she was a sensory seeker, she was demanding, and her language developed in a different way to her peers.  Pudding was a happy kid though, living a calm life where she was number one, and had all the attention she wished for.  Spectrummy Daddy and I both feel that had things remained that way, we would have continued living in blissful ignorance of Pudding’s differences until she began school, or possibly even later.

That wasn’t to be though.  Cubby was born a few months after she turned two, and suddenly life changed for her.  Here was a screaming infant whose cries hurt her ears, and took attention away from her.  No longer was mummy providing the same level of stimulation and attention, and when she got bored, she got herself into trouble.  To make matters worse, a few weeks later we moved, leaving behind everything that was comfortable and familiar to her.  It was too much.  She couldn’t sleep by herself, and would wake up screaming several times a night.  She would spin and pace around in circles.  She would flap her hands, repeat phrases over and over.  She was fearful of everybody but myself and her daddy.  She needed to be told what has happening all the time, or she became terrified.  She required complete control over her environment and possession.  She would line up her toys. Instead of playing with other children at the playground, she would get in their personal space, and touch their hair.  It was autism, almost overnight, or so it seemed at the time.  For 2 year-old pudding, this level of anxiety was the trigger.  I think that anxiety in this particular situation is a perfectly normal and understandable reaction, but back then I couldn’t distinguish between autism and anxiety.  A year later, I can see that this was anxiety, and for Pudding already predisposed to autism, this was the trigger for her.  As life has become more settled, so has she.  She hasn’t lined up toys in almost a year.  She is far less controlling over her possessions, though she does still like to know where people are going, and what is expected to happen.

I’ll always wonder what would have happened if we hadn’t moved.  If she was older, would she have been better able to handle things.  Or would there have been something else, sooner or later, that would have caused her anxiety which would have tipped the balance.  We’ll never know.

I do know that if I’d known beforehand that Pudding was on the spectrum, I’d have handled our move in an entirely different way.  If you’re wondering (as I have many, many times) why we continue in this lifestyle with such overwhelming changes with a child who had such anxiety as a result, I’ll tell you why.  I joined a group with other Foreign Service Parents of children with special educational needs.  There are a lot of us (was this the trigger for their kids too, or does this lifestyle attract people with certain genetic traits?) in this same situation.  I explained how we were struggling financially to do a domestic tour, but terrified of how Pudding would handle an overseas assignment.  I got wonderful advice from people in the exact same situation.  Who helped me realize that overseas we’d be supported, that we’d be able to create a tailor-made education for Pudding to make the most of her strengths, and assist with her weaknesses.  I’d be able to get the therapeutic assistance she needs.  That the reasons why we always believed in a nomadic lifestyle for our children are still valid, the diagnosis doesn’t change that.

One mother I spoke to has a teenage daughter with Asperger’s who told me that she thinks moving has enabled her to become more flexible, resilient and social (!), required it in a way that a static upbringing would not have allowed.  I have to hope that the same is true for my kids.  Cubby will be the same age as Pudding was when we next move- will this prove to be his trigger too?

Me, Me, Me.

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The world revolves around Pudding.  I’m not just talking about her vestibular issues, (I will get to those one day, Courtney!) but in the way that she likes herself a lot, and everything is about her.  She has always enjoyed looking at herself in the mirror, in fact, her teacher bought a mirror for the classroom just for her.  She preens, and says: “Who’s adorable?  Pudding’s adorable.  Yes, I’m adorable.”  Should I draw the line when she starts kissing the mirror?  The girl has had three years of everybody in her family telling her how adorable she is, so it shouldn’t be a surprise that she says it too.  It is a fact, and I’m told that Aspies like facts and sharing them with other people.

In the last couple of months, some of her dolls that previously had their own names have started to be called Pudding (apart from male dolls: they’re Cubby).  Princesses are still princesses in books, but any other girl character has become Pudding too.  And of course, a dozen times a day I’m asked to draw a Pudding for her.  And pronouns being a real problem for her, she constantly refers to herself as Pudding.  So it isn’t really “Me, Me, Me”, more like, “Pudding, Pudding, Pudding.”

The word “autism” comes from the Greek “autos”, meaning self.  And here is the dictionary.com entry for autism:

–noun

1.

Psychiatry . a pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment.
2.

a tendency to view life in terms of one’s own needs and desires.
It is the second one that is interesting to me here, is this what is going on?  I don’t know, it seems like something all little girls do.  I can’t tell any more.  My idea of typical is pretty skewed these days.  It seems like the kind of thing I might have done at her age, but I’m not exactly certain that I’m all that typical either!  Although, having read that definition of autism, I don’t think I have it.  I’m too busy focusing on what certain other people want and need.  But if you ever see this entry:
puddingism
-noun
1. a tendency to view life in term’s of Pudding’s needs and desires.
you will know for sure, that not only does she have it, but I do too!  Pudding, Pudding, Pudding.

Written by Spectrummy Mummy

September 9, 2010 at 8:23 am